hello everyone
great post. I hope that this helps. born and raised in Manitoba, Canada. Lived in saskatchewan,Canada. I worked as a crisis counsellor.(night shift) I was very active. I went through a very bad break-up a few months before my onset of gbs. It started with flu symptoms. fatigue, no energy. My children felt helpless. I went to ER for the docs. to tell me I had a chest infection from a cold.I progressed rapidly until almost dying and completely paralyzed with terrible muscle pain. I could no longer speak and then needed a respirator to breathe. I had hair loss, and I lost a great amount of weight. (I wasn’t very big to begin with) all in all, my suspicion….. to much stress……,
It’s been quite a journey…. I’m here,walking now, going to the gym. And trying to piece my life together. although the journey is not nearly over. I want to live, love and laugh.
take good care always.
Hello Everyone!
Just a reminder that in the newsletter I just got the beginning of October 2010 there is a large article written on exercise!
I agree the water exercise is great but very easy to over do it and when you get out the gravity takes a toll!
Check with the hospitals in your area some are building health complexes and can work with you on rates for the month. I paid under $80 a month and I could go 7 days a week and for any time from 5 AM to 10 PM. They had basketball courts, racketball and volleyball. All the exercise equipment and weight training! They had a regular pool (84 degrees) and one that was strictly rehab pool set at 94 degrees. Steam room and Sauna and hot tub. I was not able to do those after GBS because my body does not do a good job of regulating heat! I got chilled in the regular pool too! They worked with me and I did well in conjuctions with my PT and OT. Then I got a personal trainer they supplied for free to helpl me go thru the facility and make sure I did not injure myself. It was easier for me to take showers there too! Flat floor and seat in the shower! Something to check into!
I know there are also charities and clubs in communities that will sponsor people with limited incomes. Don’t give up and keep checking because situations do change! 😎
Hello Everyone!
The bowls of snacks never go empty! I see to that! There is always a buffet and if you have a dish that you think we would enjoy, please add it to the table. I know with the veggies coming in and people giving us stuff, we will have someone making homemade salsa! Zucchini anything is my favorite. I have not had Zucchini Bread for a long time and it might be a great thing to slowly eat with my glass of wine.
Thanks Summer is my time I like to reaccess my situation and see where I have improved. The heat does not seem to be helping alot but being able to get out and not have to trudge thru feet of snow is a big plus. I can not believe this November will be 5 years and I am still seeing big improvements.
Liz nice to see you still here being healthy adding that stalk of celery!
cay we don’t need a bouncer we are adults! We do have a designated driver who gets us home safely. I gave the job up! The landings were getting too much for my broom. We have a beautiful red trolley that we take home. It is more efficent being electric the neighbors don’t hear us coming home in the wee hours of the mornings.
Someone put the chocolate bars in the refrig they are melting in this heat! They brought the new ice cream maching today! I like the sugar cones! Help yourself!
Have a great day!
Hello Everyone!
I will have a glass of wine with you! My favorite baseball team is the Pittsburgh Pirates. My favorite football team is the Pittsburgh Steelers. My favorite hockey team is the Pittsburgh Penguins! I do once in awhile cheer for the Denver Broncos, but not as much since Elway is not QB. I also have been known to have a weak spot for the Miami Dauphins, when Marino was there. Now pretty much just stick with Pittsburgh teams. I think that is because I have lived here all my life. I like NASCAR too and am very happy this year that Chip Ganasi is winning in all kinds of races! I knew he could do it! I like Harvick, Gordon, McMurry and Martin. My favorite track I think is Pocono Raceway. I made sure the snack bowls are filled and think cheese and fruit will go well with this wine. This Summer I am feeling the heat! Finally and most people would not celebrate this, but my body is able to sweat again. This Summer I am feeling the heat and have given up on wearing my sweat suit all Summer long. Nice to feel semi normal again. How is everyone else doing? 😎
Hello Everyone!
I read the threads about the dentist from the beginning and still the Novocaine or lidocain do not work on me but ceptacain does. My Dentist has worked with me on this and when we tried to go back to the others they would have to send me home and after I was home an hour the Novocaine or lidocain would work. So from now on I either do work without any shot or get the ceptacain. But I have to keep reminding them that I do have a problem because they automatically try to give me the Novocaine or lidocain when they are new assistants. Guess it all comes down to communications again! Also, I had GBS and not CIDP so not sure if that also would change things.
Hello Everyone!
Alison Hope you get this message! It has been a long time since we have heard how your Mother is doing and would like to hear from you! After PT and OT I still had work on my own to do. There are just those tiny muscles that get skipped over when in PT and OT. Some I asked how to get them moving to the best of their ability to get full movement back. Others I could figure out by myself how to get them moving for full use and range of movement. I can understand the not wanting to wear clothes. Some have experienced the nerves are so over sensetive that even the sheets on the bed touching the skin is very painful. This may be the case with your Mom. Also, in PT they can do certain things to descenitize the nerves. I still have areas that if touched can not feel the touch. Some areas that are way too scensitive and the over active nerves can get the best of my energy level at times. Sound can even set them off to vibrating wildly. I am sure there are medications that have been tired for this but all my problems are constantly changing thru the day that I don’t take any meds. If i was in extreme pain then I would have tried. I still get cramping and spasams, they hurt at the time but don’t occur everyday, so again I don’t take the meds that have helped others. Please get us up to date if you get this message! Remember depression is a big part of GBS and this great quick change in our lifestyles. Our caregivers are our best companions thru this journey.
Hello Everyone!
How long have the laws been in the books? It has been awhile or long enough for changes to be done! Damage to the bars and TP missing and some one took the soap and the hand wipes. There are alot of reasons why things are done slowly, maybe budget? But these places have had plenty of time to conform to the lays. I bet if we started to sue they would get them done faster. Maybe not! There is someone sitting at a desk figuring out if it would be cheaper to pay the fines or fees than to make the changes that cost more space and money. I bet there is a website some where that someone has made to report these places to the world rather than let them be covered up! Some of these managers or CEO or owners have to take it apon themself to have some common courtesy to see how it is. They need to be able to consider that the handicap is just not those in a wheel chair. Laws should be followed but how about more common sense and courtesy to people. Every read the list on the door of times that room was cleaned and the dates are missing for a year? Do they have another system they are using for employes to initial that this facility has been cleans or checked or they have a list in the office that says when it has been cleaned and the old one was just left there. Oh and the handicapped parking spaces! I see some that are so far away from the door and you have to cross over two lanes of parking and a parking zone to get to the door. How about the one over there on the side of the building that I used that is not handicapped parking but it is flat and right next to the door. Who assigned these places hanicapped and what are the rules for their locations? I don’t see where we have made any improvements over the last decade!
Hello Everyone!
Actually that trip on Friday did not take as much out of me as i thought! I slowed down over the weekend but I got a few things done! It is so hard to predict how things are going to effect you! The end of this week is going to be warm! That always gives me energy! There is green starting to appear in the woods on the sides of the walking trail. What a weekend it rained out my racing at Martinsville! Just catching it now on tv. Snacks are out of the back room and on the bar! Everyone can pick what they like, I put out a big variety! Enjoy!
Hello Everyone!
SPRING is here so put some SPRING INTO YOUR STEP! Went to a local winery today and picked up some great wine! Tasted a few of the ones you have been talking about. Apple, Pear, Elderberry and so many more! Where do you start? I picked up a bottle of Volant Red! Had a taste and it was sweet but so smooth and had a surprise with the after taste of grapes directly off the vine in the sun, like you got when we were a kid under the grape arbor grabbing a grape as we got the swing to go higher and higher!
I have brought up all the snacks that are salty and a nice spead of cheeses to go with our wine!
Have a good safe weekend! Enjoy the SUNSHINE!
I know driving almost two hours to get to this winery I am going to pay for it tomorrow and Sunday! 22 degrees here this morning! Brrrrrrrr Did get the onion sets planted last week. I am planning on having a good Summer out on the patio this year! I am plannning on what i am going to plant. My veggies are in pots on the patio but it is my GBS version of a garden. Haning baskets and pots of flowers are going to add a bright spot to the patio edges!
Hope you are feeling better! I know the container gardening has been rewarding for me last year and hope to have plenty of fresh herbs for this years grilling!
KIT 😎
Hello Everyone!
I am about 4 years and 5 months from my onset. This post reminds me of how much improvement I have actually had. I forget about things when they are not bothering me. I recommend keeping a Journal and going back a month or every few months and seeing the very small, slow signs of progress we all actually are making. The sheath of the nerves repair at a very slow rate. I really did not know or understand what [B]G[/B]etting [B]B[/B]etter [B]S[/B]lowly really meant. Now, reading my Journal and looking back this post really has reminded me of the metal taste in my mouth and the double vision for 10 weeks. Frequent visits to the Neuro-opthamologist for vision problems. Also, the joy I felt the first time he said come back in a year! I remember just the way visits to the Doctor appointments used to wear me out. Oh I don’t even want to discuss how long I had to sleep after coming home from rehab visits for PT and OT. I still can not get over how deep a sleep I go into when just taking a nap. I don’t hear the door bell or the telephone and they are both right next to me! I was never like that before. I remember trying to explain to the nurses in the hospital thos first few days that when I drink cold or warm things that the roof of my mouth gets needles and pins and feels like it is falling asleep. Then the same with the tongue and then loosing the ability to swallow. Then they started to pay attention to me and take me serious. Not too often now but last few years I have had the terrible cramps in my tongue. Talk about panic when you can not breath or talk and then you calm down and remember to relax and breath thru your nose! To me it feels like I was going into a seizure, but that is not the case it is a spasm of the tongue. Yep what a weird problem to not be able to feel your butt and that area. Then thinking you are sitting on a ball and going to wobble off. Meanwhilel you are not even tilted to the left or right. Then in the shower testing with the water to feel where I am still numb and little tiny spots on my body that are still numb to this day. Might be a circle as big as a quarter or an egg on the front of the leg. Or a patch as big as a slice of bread on my hip. The tip of a finger or my forehead or chin when I get tired. The list is so long and my playing attention to my body has be raised to such high sensetivity levels. Sound effecting things and causing me to freeze or shake. The most annoying is the vibrating or chilling sensation. Also, the burning that either feels like pain from frost bite or from heat that I want to pull away from. The constant cramping still grabs my attention! The weakness when walking into the wind that just drains my energy! I can go on and on but one thing foresure is it is happening and it is not in our heads. If that happens and your Doctor is not listening then go to a Doctor that does understand. Being able to tell someone what you fell like is very hard. Finding the right words to describe what it feels like can be misleading. You can also be considered a complainer! Well keep that Journal and then you have a point of reference to see your progress! Reading the message boards has helped me come up with words that discribe things better. Most frustrating is when you start to recover people think you are better they don’t see the things that go on inside your body. Just keep telling yourself it does get better slowly! I tend to see big improvements over Summer. I can do more this Summer than last Summer. Major break thru improvements! I can not wait to reaccess my situation after this Summer! I know everyone looks forward to Summer but for me it is just more than warm weather and vacations and picnics. 😀
Hello Everyone!
Besides my addiction to NASCAR I love to watch the Olympics too! Especially the Winter games! Good Luck USA! We need to get more supplies under the bar. I puts out snacks for everyone! Great big fruit salad in the refrig and a huge veggie tray in the cooler. Help yourself. Be Back Soon! KIT 😎
Hello Everyone!
I don’t travel any more for the same reason you have. But I don’t have the powder chair. I felt the stress and walking needed even if I did have them meet me at both ends of the trip with an assistant and a wheel chair that I would be exhausted. I think that was my bigest fear! I am 4 years and 3 months since my onset and I am getting stronger! The vibrating has not been as bad and the tingling is getting better slowly. Each of us have healed at different paces and to various degrees! Just listen to your body! Enjoy the ride because you have the access to a power chair. Have the airport meet you with an assistant might be a way to go to get you to the gate and then to get you off the plane and to the luggage area. How about if you ship your belongings, would that make check in easier? I hope you plan on having family meet you at the airport too! I know alot of people from this area that travel and go to the GBS meetins and symposiums! I had all the symptoms that you had but they have lessened in intensitivity. I still have some areas that are not as strong like my back and hips and wrists and ankles but they are still chaning and getting stronger after all this time. Just in the last year I have had some good progress! I am able to stabilize my wrists to bring things down off of shelves and put them back up and not fear for my life! If they do wobble I can get them undercontrol but not get a box on my head. I can cook more and control the pots and pans since my wrists are stronger. That is a big thing to get back for me! Even being able to wash the dishes and not have my wrists turn backwards with the pots and pans or dishes has made cooking a pleasure again.
Work thru your fears and enjoy your new “normal” which just takes a little more planning! Sounds like you have made some major decisions that will make your life enjoyable for you and your family being closer!
Hello Everyone!
Kazza the next time you get the chills, take your body temp and see if it is below normal! I would be interesting in knowing if that happens to anyone else.
I do know that the nerves near the spine are the ones that control your body temp and when I was in the ICU I was sweating and was wet like i had just got out of the pool. I had them open the window to my room and it was near zero outside. I had a fan turned on me too! I am glad the nurses kept me confortable. I traveled thru the whole hospital from room to room with a fan….when I went to the different levels. ICU, Special Care Unit, Regular Room in the Rebhab Center…..have fan will travel. After about 9 weeks that all leveled out. Then I was always cool and to this day am always under blankets. If you let it, this can really play alot on your common sense! I tend to just laugh at it and go with the flow. Take care!
Hello Everyone!
Kazza I did not see when your onset was and I do remember some of the painful electrical zings and zaps that I had. Some burned so bad and the pain lingered after till I rubbed it! Other times they made my arm or leg kick or punch. I get them still after 4 years but not as much. I don’t cook at al with salt so I really freak out when I could taste it in soups. I still have trouble with the hot and cold foods they make my cough and choke. I don’t put ice in my drinks and I don’t drink hot drinks until they sit for awhile. Changs in temps like when I go outside or come inside or go into a/c will make me cough and choke. It is like my throat is closing! I did have a trache so figured that was still tied in with that irritation but I am not even sure. Like you I don’t like to complain to the Doctor. But when I do he listens. The severe fatigue is gone and I am doing good and only require a nap here and there! A very busy day will slow me down for the next day! I just go with the flow. I sorta remember smelling burning wiring but your right it is weird when no one else smells it! One big things is feeling my body get the chills like i have a fever and yet my temp is either normal or below normal. I have a sweatshirt on all year round. I look around some days and I am just comfortable and others are in halters and shorts. I look like the bag lady! I very seldom get hot enough to sweat but that finally is starting to change and I did sweat a few afternoons the Summer before last! I try to stay out of the Sun so I don’t get overheated.
Ms Judy I know what you mean but get yourself a Doctor you can communicate to. That is one thing I made sure when switching Doctors. If I feel they don’t know enough about my illness, I go else where!
I am not on any kind of pain meds because my pain was constantly changing hour by hour or day by day or even minute to minute. How do you complain and get meds for something that does not happen all the time and feels different. I took it as a good sign that my body was able to feel and that it was healing. Those were sparks trying to restart my engine! LOL Hard to explain to anyone where the pain was days later or what it felt like on a scale of 1-10 LOL
Take care of yourselves, believe in yourselves!
Hello Everyone!
There are some things that I remember from my onset that was caused by the GBS. Nerve senitivity that is on overload. My brain was going a mile a minute trying to process all my thoughts and my body just could not keep up!
Coming out of the reverse side of the illness I can remember them telling me that when the taste starts to come back, salt will be one of the first tastes. Since your sense of taste is based on the sense of smell, I am sure all this is connected. If you don’t beleive it, remember when your Mom said to hold your nose so you would not taste the yucky medicine? If your sense of smell is off, so will your sense of taste. If you lack a sense of smell like many elderly people do you also loose your sense of taste and then don’t enjoy foods and don’t have a good appetite.
I can also remember everyone saying that they noticed a metalic taste in their mouth before their onset. I did not pay any attention to that until I read that on the message board.
Talk about sounds! I remember being a person that you could come up behind and say boo and I would not even react at all. Now you do that and you have to peal me off the ceiling! Just the phone ringing or a car horn will launch me into the air! Not to mention just a person behind me saying something and you would have thought they poked me with a snake. My reaction to noises is actually embarrassing now. It looks fake, but I can tell you I can not control it even if I expect something to happen and try to prepare myself.
After 4 years some of that noise sensitivity has decreased, but it is still there and I have to laugh because of my uncontrolable reaction to things.
One thing that really gets to me is when someone will start to tell me how to get out of a car or tell me to be careful doing something. My body does not handle the noise or stress what ever it is and I go paralized like one of goats that faint. I can not move, I just freeze up! When they stop, it stops and then I just tell them to shut the heck up! Don’t talk to me that way! Then I explain why! My example to them that I fear is what if I was crossing the street and they tell me to HURRY! I feel that would cause me to freeze up and I would not be able to take another step.
Our normal is very weird but I have learned to listen to my body and to tell people how I am feeling and what they are doing to me by trying to help!
Communication with family, friends and your Doctor is key!
Oh and while I am thinking about it the faster you walk will not help me to walk faster. It seems the message from my brain is slow to get to the muscles and the more they repeat steps the fatigued they get! So slow down and walk with me rather than walk so far ahead of me! Slow down and enjoy life! It goes by too quickly!
Hello Everyone!
I don’t remember having the smells or odors effect me as much as the noise. I will have to pay closer attiontion. I do notice that all smells seem stronger to me. For example: Coffee, smoke or cleaning products. Now that you have discribed it a little it might help me pay closer attention to my body and what is going on. I do know that after 4 years and 2 months I am not as sensitive to noise like thru that first year. Also, smells don’t take my breath away and make me cough or gag as much! Things are slowly improving for me and my GSD. I will say a prayer for my buddies with CIDP.
Hello Everyone!
I too lost my reflexes and my neuro told me not to worry about it. He said they will probably not return. Last exam there was a slight reaction in the one knee…..nothing outstanding for being over 4 years now. I am still struggling in my own way but have great reflexes when I knock something off the shelf or someone throws something at me, I can catch things quickly! I still drop things but catch them and I am very happy about that! People toss things to me and others gasp! I catch them and everyone relaxes! I use that to my benefit and start things now because I can dish it out and now I can take it too! LOL My strenght is always getting better and my wrists were the last big improvement. I still struggle with the walking distances but I can get by without a can but feel more comfortable not having it! Big test was this December when hubby had brain tumor removed and I let him use my cane! Boy did I miss it! But we got by! All the stress from his illness caught up to me after the surgery. I crashed but am slowly returning to my new normal over the holidays! Speaking of the holidays! Happy Holidays Everyone! Take care and I am looking forward to 2010!
Hello Everyone!
CHEERS! Looks like everyone is setttling in for the weekend and to gather around the warm fireplace! Nothing like the smell of wood burning, the warm glow of the flames and FOOD. I stocked the shelves in the pantry will all our favorite OctoberFest goodies! The wine cellars are full and the brewery out back is making our favorite brews! Pass the mugs! 😮
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Mick 56 from what i can see and other might correct me if I am wrong. From what I know about IVIG they give it for 5 treatments every other day. You have not had that so not sure how they expect you to get the right dose to help you. You are also not receiving enough or on a regular schedule after the first treatments to put you on a maintance dose or treatments on a regular basis for even CIDP. I am not sure your team knows enough about GBS OR CIDP. Once you get that initial IVIG and it startes to work and stop the attack of the GBS you don’t get it anymore. In my case they did not feel I was responding to the IVIG and they went into the Plasmaphresis Exchange hoping that would stop the attack of the GBS. It did and the process started to reverse and my body started to respond slowly. When you do the PE that wipes out all the effect of the IVIG and is a more agressive approach. I don’t take any suppliments or medications. I have never had any more IVIG or PE. I had relapses and become frustrated. Usually I go bad to my journal and its go back to a busy day and see why I felt so bad. I did too much. I paced myself and did not schedule rehab for days that I had grocery shopping or a doctor’s appointment. I could not complete that much in one day! Now I just go until I get that feeling that my legs are heavy and I don’t want to walk, sitting down is what I need. I just go home when possible. I know when I have hit my limit for the day! I hope you get some answers from the tests to confirm what you have so that they can start to treat your illness rather than just playing around with your life.
Hello Everyone!
Mick56 just to give you an update on my slow progress. You still have not got a dx of GBS or CIDP? IVIG is given 5 times every other day and so is the PE. Not sure what schedule your Doctor is following. That part is still not clear. I just went back after a year for my eye test and everything is good and no worse but no better. But where it is now is a far cry from where it was to start. I have lost that double vision when I look up or down the eye muscles are gettting stronger. I feel that even the clearness in my eyes from the floaters that I had before I got GBS is better! I am finally happy wilth my eyes for this older body that is a few years older than you. I have to use reading glasses but that is ok. My eyes don’t get as tired as they did a few years ago. This November (2009) will be 4 years and I feel the little bit of loss of field of vision is normal and I enjoy driving and sight seeing again! Everyone is different in where the residuals end up but my hands and feet have only got a tiny bit better as far as being numb. But the strenght in them has improved since last summer. The fatigue has gone away last year and I can tell you I feel much better. I still require a nap here and there depending on the day or weekend I have had. I pay for a busy day and over doing it but recover if I take a day or day and a half to recover. To me that is reasonable. I still am not able to work or do yard work like before. I can handle a full day out away from home if I come home and rest the next day. It has become very predictable and I know my limts now. Sometimes I surprise myself too! House work could be a little bit easier but then again I used to do it all. Now I have to ask for help. Laundry, dishes and cooking are no longer hard for me to do. I think clearer too, not as much GBS brain fog! I can concentrate for longer periods. Noise wears me out physically, because it makes my body or muscles vibrate and waste energy. But that has improved so much from the first year. I do not have any reflex in my knee or arms. Although the last doctor exam she said she thought there was a twinge in the one knee. I don’t walk with my cane as much and the wind does not hold me back as much. I still have weakness in my hips and back and that keeps me from walking as far as I would like. I do use the electric scooters in larger stores. The rest of the time I just hold on to the grocery cart and do well. I have again started back to rehab to strenghten my back and my hips. I am sure they will work on the abs also to support the back muscles. Once all the muscle get some more strenght then the balance will be much better too! I still have some goals to work toward. Listen to your body. Ask yourself some questions like what you did the day before that caused a set back today. Are you doing exercises that will give you more range of motion in those joints and flexibility where you are getting stiff. Is there any exercise I can do to strenghten the fingers or ankles. Usually stiffness or pain is caused by that area being weaker. Do stretches to help those shoulders and try Yoga it is a slower precise way to exercise and does a body good. Most of the Martial Arts are good. What you don’t want to do is something like boxing or doing too much. Back down in your routine and let those muscles gain strenght before you move on to adding too many reps or weights to your routine. Motion is going to be your best friend and being in a pool might be what you need to take some stress of the joints. Maybe doing things all at once is not what you need but you need to do less amounts several times a day. All that exerces if adding up over the week. If you can only handle walking or exercising 5 minutes then do it each hour or every two hours to get in your daily exercise. A little at a time really adds up quickly! Be patient and give your body time to heal. See what your test shows and talk with your Doctor and see if he is going to call this GBS with the MF variant or do you have the cronic form of GBS called CIDP? Treatment for either one is not the same……they are very different! Take care of yourself!
Hello Everyone!
What is the noise in here? I know I have not been in as often but now that Summer is over I will not have as much outdoor work to do. Here is the box with all the snacks that go behind the bar and plenty of goodies for on the bar. I like to try out new recipes adn my favorite thing to make is Appetizers so enjoy! Much of the things are out of my garden so nice and fresh and healthy. Salsa is really good! ENJOY!
Hello Everyone!
Hello Everyone!
Hello Everyone!
I love this thread it has show me so much can be done when you are so determined and challenge yourself! Keep up the good work! Looking back I know you have to see what you have accomplished with a little hard work! I bet your family and friends are SO PROUD of you! Keep us posted! I love upbeat threads like this. Don’ be in such a hurry to get off the meds. Give them time to work and let your body get used to them. Healing take a long time and a broken heart take the longest to heal! ((((HUGS)))) 🙂
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Tom I know what ever it is, it gets your attention. I notice things now that I never did before. I do pay attention to every zing and zap and twitch now! I just can not help it! It is fun to see others jump when they get a zap or a zing and I just make a mental note but don’t react, but they are there! Cramps are what get to me! But from when I had the hic ups several times an hour and to when I had suffered from constant yawning the body has healed and until I get tired you would not be able to tell I had GBS. My hubby can pick up on when it is time to go home. The eye lids still rapidly fall like a baby! Some mornings I can not open up my eyes until the muscles are ready! Takes a few seconds but I notice the delay! I still get the cramp in my tongue which just sets off a panic I can not explain. I have to immediately talk to myself “breath thru your nose” and stay calm! Yeah, right, but it aways goes away. No meds are going to take care of those things they are so far apart to take meds for! I even have a hard time describing them to the Doctors by the time I get an appointment! Oh can we write a book on this stuff or what! WOW I admire those that done just that!
Well put Susanne you selected the wording just right! That is what I have heard too!
Hello Everyone!
Before GBS this time of the year when it gets light earlier in the mornings and stays lighter at night I come out of my Winter hybernation and am more active. I have noticed that I have an annual slump that does occur each Spring from less and less rest! I am more active both mentally and physically. My days are longer and therefore my residuals are increased this time of the year. It does level off and I enjoy my Summers and make my best recovery during the Summers. Winter it is a natural thing to hybernate and become less active and have shorter active days. Lack of light is known to cause depression that time of the year too! Our diets change too and we eat more comfort foods. I am sure that stress from an extra Spring time job would also kick up some residuals. Just take each day one at a time. Call your Doctor and also check to see if he/she wants to do those tests after you research them. I was just ill 103-104 fevers for two days and that has given me a step backwards in energy level. I just don’t get as fatigued as I did. Last Summer that just left like someone flipped a switch! I know from where my tiredness is if it is from the GBS or just a busy or over active day. The GBS I feel from the waste down. Spring cleaning will bring on stiffness and that heavy feeling in my whole body. Residuals from the GBS only effect my lower body! I do still have the numbness in my hands and feet and it moves slightly up and down taking over the ankles and wrists. That changes day to day and a few times in a day! I don’t take any pain meds but the burning does get on my “last nerve” It just for me is not lasting very long and will change and is not as bad as most have that pain meds are necessary! Everyone is different and I consider myself very fortunate, yet I struggle each day! Listen to your body, talk to your doctor and REST! I will be meeting with my GBS-CIDP group on Saturday and I will do a survey of what they are experiencing this time of year. Interesting thread and this is where these things turn up if you keep a Journal you can compare if you don’t have an event like coaching that also starts in the Spring too! I will let you know what I found out at the meeting there will be people there that had GBS and also CIDP people unless the 80 degree weather keeps them at home and working in the yard or other outdoor activities! Spring is here!
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Yes I was questioning that article in my head thinking did he have a relapse or a new case of GBS or what. Did not sounds like the classic onset of CIDP to me from what I have read from the others but then we all know there is no classic case of GBS or CIDP! I as a STEELERS FAN wish him well and his family the best! I am sure he has heard that Dwayne Wooddruff of the STEELERS and now a Judge in PIttsburgh has a daughter that had a severe case of GBS at the same time as I did and he had a great support group for her. I hope the “refrig” has many many caregivers to keep him comfortable and that he can REST REST REST! We can not say enough about our caregivers and their support!
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Hello Cheryl! Linda I know you are not feeling well and life is throwing curves right now but soon you will be hitting curve balls out of the park again! Don’t dwell on the past and the hard times! Think possitive and about the flowers and garden. Sitting out under the awning watching the veggies grow! Think of the things we are able to do and enjoy them! You are doing alot! You have been doing things to make my life very exciting. Any little small changes make a day better. Getting a note in the mail or a phone call. Just hearing from you on this forum is an indication that things are better for you and your family. Change is slow and as you know so is healing. You gave alot for your Mom to get her back in her home and now it is time for you to heal and take care of yourself. You can not meet your goals if you don’t make any for the future! Mine for the rest of this month is to enjoy the sunshine! I am going to try and get outdoors each day and pull a few weeds from the flower beds. My larger goal is to get them all cleaned out by Memorial Day and enjoy that weekend on the patio! Today, I just want to get a load of laundry done! Anything above that is just icing! I can not wait to see a photo of the kittens!
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Since I have had GBS I have been really healthy. Not catching everything that goes around. I have returned to that kind of immune system protection. Last week I got a low grade fever and sluggish. No other symptoms. Until Thursday and I went to bed a few night earlier than usual. Thursday night I went to bed and kept waking up with severe chills. I was too tired to get out of bed and check my tempature. I knew it had to be a fever and the more I shook the more the aches and pains got. I just stayed silent till morning and asked for DH to take my temp. 103. He paniced! I did not look ill and was showing no other symptoms. He took care of me and then went to work and I went back to bed for the day. Drinking lots of water and sleeping. He come home from work and it was still 103. So we attacked it without letting up again! Finally for the second time it broke! Took two days for it actually to break and stay down. I have been recovering since then and no fever. I do a little bit and then go lay down. Back to doing what I can to get REST! I am eating better now and getting more done. During this time it settled in my back which is my weakest point. That is feeling better now and able to sit and do more now. Tiny short projects. REST REST REST. I am back to doing my yoga and exercises but went back to a starting point at I was at the beginning of my rehab……just enough to keep me moving and range of motion and flexible. Breaking no records but staying alive! Still canceling appointments with friends, but looking forward to the warmer weather coming in the end of this week! Make sure you get some sunshine! Listen to your body! I did not have any of the breathing problems that others have got but this fever took alot out of me! Take care! Put on a happy face! 🙂
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Hello Everyone!
I have a friends that her daughter got GBS when she was 11 or 13 and now over 18 has very few residuals from the GBS and does have Raynaud’s Syndrome. Sorry to hear that someone else is having the same problems with other illnesses. GBS is enough to deal with IMHO!
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I was seen at my request in the hospital by a Neuro Opthamologist and am still under his care. I had the double vision and my eyes were frozen wide open and under much pressure. They were sore to the touch when washing my face. I lost my peripheral vision which gradually got better as my body healed. Finally after a years my vision is actually better than it was before the GBS. A year ago i was told to come back in a year which is next month! I was glad that I did keep up with my eye appointments all thru this ordeal. During the second month I was given eye exercises to do to get them to move with coordination together. I was told to move them with the baseboard and molding around the doors…..follow any lines that were vertical and horizontal. Bulletin board, ceiling tiles, window pane and follow the outline of the buildings that are outside the window. I feel that really started to help them come back and get stronger. After doing that then they made it a little bit more interesting and had me write the alphabet with my eyse in a tile block in the ceiling. N M Z T V A H got to be easy but the S O Q were harder to trace. If this did not help it sure did keep me from getting bored. I would write whole sentences with my eyes! HELP GET ME OUT OF THIS BED! Yep I even added the punctuation! LOL Be Patient and work hard to get to your goals!
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Hello Everyone!
Linda I have been worried about you being in that roll, being ill yourself! Seeing you post that you are extremely exhausted from taking care of you Mom is not good and you will need to give up things that you enjoy! We can chat later and get back to the crafts and flowers and garden. Our family is most important and you are correct about it not being an easy job being a caretaker. When I become ill I realised I was not a very good caregiver to my husband when he had his stroke. There was so much more I could have done! There are things I did that I don’t remember you just go on autopilot sometimes. The important thing is do what you can and ask for help for other things that others can help with. Even if it is something as simple as someone coming over to just keep our patients company as we do the other important things that we would not ask may to do for us! My work has not begun yet.
My Mom had her hip replacement March 12 and has been moved to rehab. She is the one doing all the work now to get home. Once she is home then I will try and spend more time with her to make sure she makes the change back to being at home. Today she is complaining that her throat hurts and her jaw and her legs are swelling. It is hard to see our Mom and Dads so fragile.
Remember to take care of yourself too! (((((HUGS))))) Your my hero!
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Hello Everyone!
Stacey and LIZ What a great time to write about our love for such wonderful people! I will celebrate my holiday with the ones I love and also by thinking about the ones that are in my memories! Enjoy the good memories on this beautiful day based on LOVE! What a better time to tell others about the ones that loved us and the ones we love! HUGS! HAPPY VALENTINE’s DAY!!
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Hello Chrissy. I just am dropping you a note to let you know we all know how heavy our hearts were when we lost a pet! Your loss also makes us sad you had to go thru what we did. Also, wanted to let you know there is a lot of comfort this this site. [url]http://rainbowsbridge.com/Poem.htm[/url] I have lost two pets since I come down with GBS. We all know how much you miss Tigger. Perfect name for your dear buddy! HUGS!
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Hello Everyone!
Dawn nice to hear that Kevin is doing well and you are still noticing changes. With out Journaling I would not have noticed when things got better or I tested myself to see if I could do something yet. I know when my reflexes returned not too long ago, I shocked myself when I caught something. I kinda struted like a rooster….and I might add it was a proud rooster! No one was there to be a witness, but I celebrated! Nice post to brag about some great steps in our lives! Thanks for sharing…sorry I am not able to give you any comment on the meds but I do know that cold or heat does come out in pain…..I just try to stay in that normal range to avoid any discomfort from temps. Again I have GBS but I am sure there are things that are similar between us.
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Linda I am so glad to hear your Mom is dong better and that you have broke into that barrier that keeps so many from getting proper care! I understand your frustrations. Maybe all will finally start to fall in place now so she can get the rehab she needs to get well and mobile. You and your hubby make great caregivers and are doing what you have to do to make sure a loved one is getting the proper care. Most of all I was glad to see that you posted [B]”Been resting when she is resting”[/B]. I was going to make sure we kept reminding you of that fact! Take are of yourself….you did a good job of getting to the bottom of this! Hope this has shown others to be an advocate when necessaray! We are humans and not a product on an asembly line!
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Sue I have read your posts here from the very begining of my visit to this forum and I know you are not a whinner. Don’t worry what the co workers think…it is hard enough getting family members to understand what we go thru. I am sorry we all have to go thru this illness and we all have different residuals but very common residuals. They are real and not in our heads. I do think that was alot of weight they were having you lift. I am not sure with the CIDP but I do know with the GBS that we need to keep moving and I choose to do daily stretching and yoga or tae chi exercises to keep my muscles moving and those tendons and ligaments healthy. Proper posture is something I have to concentrate on all the time. I get little pains daily from tiny little muscles that cramp. It has been over three years since my onset and I am slowly getting stronger. Just in the last year I was able to finally tighten or control muscles or muscle groups. Finally my back is getting stronger and my ads were weak and they are actually starting to just respond to the exercises I have been doing over the years. Guess they just were not getting the signals correctly and now have healed. I still have a long way to go and to try and single out the areas that are still weaker and work on them. In an other thread I seen someone was having trouble going up on tiptoes…..I still am having the problem. Getting up from the floor is very painful in my foot and ankles and now the swelling is starting to effect my knees. I just keep trying to work on these areas to get them stronger and back to where they used to be or close to it. Don’t stop moving but becareful of the twisting, that causes me rib pain and cramping and spasms. Keep working with your Doctors and rehab people. I hope that some day this discomfort leaves our bodies alone! We just have to help each other to unlock the secrets. Keep us posted on your progress….remember you are not alone in this battle!
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Hello Everyone!
I like today because the STEELERS won the Superbowl and got that 6th win/ring for having a great season! Can you tell I am from SIX-burgh?
I dislike today because the State’s resident Rodent said we are going to have 6 more weeks of Winter………4-6 inches of snow coming into this area tomorrow to prove it!
Happy Ground Hog Day from PUNXSUTAWNEY PHIL and me!
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I have been in touch with a woman and her boss that got GBS and at that time they were just new patients and CIDP was not mentioned. I will keep an eye on this tread and keep in touch with them. I am not sure where they work together, but it is in the same office.
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Lori I think you have put into words many time what I have been thinking! I think we all have had these same thoughts. I agree keeping it possitive and I don’t get everything done each day like I used to. It takes me a month to do what I got done in a week or a day! But I get it done. Somethings have been on hold for three years! SoOoOOOOO? It will get done! I look back at my journal which at first was just a word on the calendar and has developed into a post on these forums or a sentence in my journal. The entire time it shows such slow improvement that if I had not wrote it down I would have forgotten how bad things actuall were. When I got home all I could do was get to the bathroom, let the dog out at Noon and make my lunch and go back to bed. I slept 20 out of 24 hours. I could not fight it and I did not try! I let that take it course. I did try to get things done but it did not work. I would start them and 5 minutes later I was laying down because my eyes were droopy and vision was blurring. That heavy feeling would just comsume me and out I would go. People (family members) could come into the house and I would not hear them walking around. I would not hear the phone ring. I would try to watch the news and make it to the first commercial. I never could watch an entire program on tv or could not think of watching a movie! I to am lucky that my husband filled in on the important things. I might take all day to plan what was for dinner. He would make it and wake me up when it was done. We both kept a shopping list and he would go buy the groceries. He worked overtime to be a loving caregiver! Still does! Now I have to say…….let the dishes go I can do them, just do the pots and pans! On the outside you might not see I was ever ill but on the inside the residuals daily do their thing. It has been three years since I come home from the hospital and think to myself! WOW look what I get done each day! It is not much to others but to me it is something I never thought I would enjoy saying! I got the dishes done all at once! I ran the sweeper in the whole room before I had to go sit down! I walked around the back yard with the dog and we actually got to play ball today! I am grateful for each day and every brag I can tell someone. It does not seem like much to them but it is a giant step to me! Everyone walks thru life the same…….one step at a time! I am still celebrating when that heavy fatigure feeling left me last Summer…….2.5 years after my onset! I get tired and I can not do as much as I used to but that extreme fatigue that is beyond exhausted, way beyond tired is not there anymore! What a reason to celebrate……….I celebrate the struggle, I face each day! Like everyone says….IT COULD ALWAYS BE WORSE! Now my energy is life, sunshine, music and friends……..many of my old friends are gone, but now I have friends like Julie that understand and put it into words so meaningful! It is like you can read my mind! Thank you 2009 is going to be a good year for us all! Happy New Year and Happy New Life!
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Hello Everyone!
lh48 every person is different in how the gbs effects our bodies and we heal at different rates. Also, a big part is how you are effected daily with the pain which can be in many different forms, sharp, shooting, stabbing, burning, spasms, tingling, etc.. I had more pain at the beginning while in the hospital. It hurt for people to touch me! It hurt for the sheets to touch my body. I hurt from head to toe. I was completely paralized and even my eye balls hurt. I have a very high level to pain and there fore just asked people to not touch me unless necessary. I did not have any meds. I did have a shoulder injury and I did take meds for that, on the bad days for over 8 months. My problem was that I had good days and bad days and since the pain was not there all the time or in different places I could tollerate it better than other people. Each day was different and the type of pain was different. I refused to take medications for the pain or for depression. I fought the GBS with a possitive attitude to see what it brought to me each day. I was one of the ones that could fall asleep and rest through out the day. The fatigue was over whelming. My brain was running at a speed no computer could keep up to and my body was paralized. My eyes would not focus and for 10 weeks I could not read or watch tv due to double vision. But I could see it was night and day and I listened to the tv all day and night so I knew what time it was and when to expect visitors. Once I was put on regular food and was not relying on the feeding tube then that also helped to let me know what time of day it was by what meal I was receiving and the type of rehab I was working on each day. A routine sure helped. I knew what to expect and knew when to make sure I rested. Days when I had more visitors or tests then usual would really make the residuals kick up. Some days were intense pain. I asked for ice or heat to see if that would help before I took any medication. For the most part nothing touched the discomfort that I suffered and struggled with. Being moved slightly and held there in a different position helped with the pressure from the bed. Being on the ventilator and trache for that whole time in the hospital prevented me from laying on my side or stomach to releive the pressure sores. They also gave me a bed that constantly moved me like I was riding on a raft in a pool. While outdoors I could see it was snowing, I felt like I was riding the waves near a island resort. That constant movement also caused pain in any area that touched the bed and had to move constantly it felt like it was giving me blisters. The back of my head, arms, back, bottom and the back of my legs and heels felt like the skin was being rubbed of. All that was on top of the nerve pain and muscle spasms from the GBS. Even now over 3 years later each day is different and so is the discomfort or pain levels. The fatigue and my mobility is better so I can move or adjust so I can try to relieve the pain in some way. I really don’t know how long I can deal with this. But for right now I can only tell myself that “I could be alot worse”. From reading the message on the forums, I can confirm that is correct. I really feel for my “GBS family members” who do have to struggle with the pain and daily life from this illness. For those that are new to this situation, we can only pray that they slowly heal and find their “new normal” and can deal with the hand they have been dealt. For now, I am not able to work and I still hold on to that goal of returning to some kind of job. Until then, I try to take care of daily chores and have good support and understanding from my Husband. I still continue to get better and am able to do so much more today than I was able to do 3 years ago! I keep reminding myself of that and try not to dwell on the many things I am not able to do. Reading posts I do understand what others are saying….I just choose not to talk about them as much as talking about how happy I am to be in the reverse process of this disease or illness. Who knows where that will leave me! I have the comfort that the medications are still there for me if I need them. I do not put anyone down that made the choise to go on the meds. They listened to their bodies and know what they need. The bad thing is the number of patients that meds were taken and did not help. The process of finding what combination of meds works for you is a long road too! I also take meds like Shirley to make life easier, so my daily life can be used to live with some quality. I hope the new year brings you and your family peace, patience and health. Hope these messages help you to understand. Questions welcome!
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Yep, everything was perfect for the New Years Eve Party. I am glad I brought something to the party this time. I usually just stop in and speed off and don’t get to taste the food or the drinks! The fire place is awesome! It is in the twentys in Pennsylvania too. So any heat is welcome, but I could be talked into a party in Arizona or Hawaii any time! I like the seasons and cold weather but I like to thaw out once in a while too! I just stoppped back to see if there was anything left over from the party! Now is when I like to chow down and watch the football games. I see USC was the first to score. Come on Penn State! When is the next party?
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LIZ I bet this Winter you are feeling very lucky you can see the sun and feel the warmth of the sun light. The breeze is pleasant and you are not having to experience the Snow on the ground here up North and the days that we just make it above freezing and the winds this year have been unbelievable! Happy New Year and I agree with the others it looks like a great place to have a jazzy and a camera and take a photo in every direction! Way to go Liz!
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When it comes to exercise we usually tell everyone “listen to your body”. It will let you know if that activitiy it too much for this moment in time. That does not mean give it up permantly it just means give your body time to heal and try it later. Maybe next season or 6 months from now! Everyone is different and you have to listen to your own body. This is how we all evauluate if we are able to advance to the next level or not! Many of us had to wait to return to work. I am not able to return to work because I have both good and bad days and I could not be dependable yet. I struggle that that but you have to accept what your able to do and be glad you have come so far from the onset of the attack no matter what the dx is. If are are not allowed to progress and see some kind of hope then depression can take a toll and you loose friends that just move on because they can not deal with your illness. It happens. Maybe working with the Coach and let him help at first with chores around the team locker room and ring. Keeping up the teams moral might be good for his soul too! He would be with friends and they would learn to understand where he is in the healing process. Even some work half a day….maybe he could play part of a game? Maybe work with the Coach and see what he can do to test him in a practice? Or a private secession. It is better to find out for yourself where you stand in activities than to have someone set your limits. I am sure you get questioned all the time from your patients why they can not walk or run when they need to follow proceedure and learn to walk and then walk faster first. It takes all muscles, tendons and ligaments to be stable. If one muscle is weaker that is when there could be a failure and injury could result. So from working with your Son and maybe making part of his therapy when he is able to go back on the ice would build up the needed muscles in the ankles and hips and back to make him in tip top shape. Have you talked to your Son what he thinks about this? Maybe there is a time where the rink could let you have a private lesson and you could evaluate him. This would be a good time for him to see how strong or weak he still is and then a day later see how he feels to see if that type of activitiy is too much for him right now? Yes, I would let him return to an activity level he can handle! What does the Doctors say? I need to read more about the TM also, I am telling you what I know about living with GBS! Others might have a different view and over the holidays might be a slow time on the message boards. Be patient with yourself too!
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Congratulations Terry! I don’t know about the others but I think she has been there with all of you, to make sure this gift was delivered very carefully at this time of the year and all of you could be there to enjoy the new arrival. I know your news made many of us smile! What a special delivery!! See you at the New Years Eve party in the Tavern!
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I am also sorry that you are having a difficult time with getting a dx. If you read many with the symptoms that were out there in plain site also were held up from getting treatment because of hospital staffs that were not well educated with GBS. Many of us were so frustrated that they ran all these tests and they were not showing anything. That is what the insurance companies require is a list of tests that rule out other illnesses. My first dx in the ER was MS but then they kept me over night for observation and I slowly progressed like your Son did and they kept doing tests. I never had the nerve tests but they knew it was effecting the nerves because I had no reflexes. They guess I had a sinus infection that was in that 30 day window before the onset that left my immune system weak and the GBS attack slipped in. Bowel and Bladder problems were only the tip of the iceburg. It was my patient OT and PT people that really helped. I would get your Son into a aquatic rehab program too if your insurance would allow it. It was very good to take the weight off the joints and give many of us a freedom that we could not reach with on land rehab. Actually too easy and it was quickly found that we could over do it in the pool because there was not that much resistance in the water. The pool tempature was a great problem too. The exercise pool at the fitness club was 84 degrees and if I slowed down I got chilled quickly. The rehab pool was a nice comfortable 94 degrees and was a great benefit. The hot tub was out and was not allowed.
On the other hand my friends Son had more of what your Son went thru…quick onset and was very athletic. He was paralized from the waist down and still has fatigue from larger jobs like raking leaves in the yard. His recovery was much quicker than mine and I have not had a change to ask her if his bowel and bladder was effected. My other friends daughter had GBS below her waist and she quickly recovered too. Both of these young people had residuals that did not heal and some that took years to put behind them. Both returned to normal lives to work and go back to school. Another case was a Bride to Be on her rehearshal night colasped. 2 weeks later she was out of the hospital and enjoying her new live with her husband. She was married that night in the hospital in her hospital gown. It was videoed and shown at her wedding the next day to people that come in from all around the country. Then later she had an other wedding so she could wear her wedding dress and get photos.
I still struggle with bowel and bladder problems but live goes on and each month/year I look back in my Journal and see that things are continuing to Get Better Slowly! Sounds like things are also getting somewhat better for your Son too.
Happy New Year to you and your family! You have been a great advocate for your Son and I am sure he will realize how lucky he has been to have to to do some of the jobs that only a Mom can do with some dignity. There is alot to be said about having privacy in your own home for those kind of things. You have done a great job MOM! We can not say enough about all our caregivers!!!
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Linda what a great photo! That one should be on the tree next year as an ornament! I am glad he made it home for the holidays! Life is good! Holidays are happy! Just like in the movies and cards. Our photo card from you was such a welcome gift! Thank you for sharing! Take care of yourself!
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Happy Holidays! I am going to invite myself to the New Years Eve Party! I can make some Appetizers and bring some snacks! What else is on the menu? Anyone have some old traditions? We have to have party hats and noise makers. I want a pair of those glasses that say 2009! 😎
I declare 2009 the year of a NEW ATTITUDE……Happiness and only good thoughts! THINK POSSITIVE! 😀
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I agree with the others you have been thru so much and have been strong and good advice for all of us. Now, it is our time to let you vent and worry and remind you to take one day at a time like you have done in the past for us. I am sure all of us have had our ups and downs and they work out! All this worry is not going to change it. Make it thru the holidays and feel blessed you are with family. Group hug from us to you! ((((((((((HUG)))))))))) 😀
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Welcome to the forum. First before I forget GBS is not a virus. It is an autoimmune system that gets confused and attacks its own body. It can follow a sinus infection or diarrehea. It can follow a flu shot or a tetnus shot also. There are many factors that it can follow. It attacks the periphal nerve sheath and can cause never damage if it is an extreme case. It is usually a quick onset and a lumbar or spinal tap is how they diagnois it with the protein levels in the spinal fluid. They will use IVIG or Plasma Phresis Exchange to stop the attack on the nerves. Once that attack is stopped the process of healing begins and it is a very slow healing process. The things that were effected first are the last things to heal. Usually our hands and feet. If you have an extreme case like I did your breathing can be stopped and your organs stop working and you are put on life support. I had the IVIG treatments (5) and my Doctors did not feel that was stopping the attack so they started me on the PP or PE (5) treatments and that is what stopped the attack. Many Doctors miss a quick diagonsis and don’t treat their patients quickly because it is a very rare thing and many Doctors have not dealt with any cases. I was completly paralized and some only get GBS from the waist down like my friend’s Son did 11 years ago. As you read this forum you will read some cases that are very similar to yours and others that are not as bad or worse than your case. Each case is different but each is vary familar at times. Glad you are doing much better and make sure you get your REST! Listen to your body and it will let you know when you have done too much. Don’t take it to that point or you will relapse. We all have dont that and keep mentioning this to people so they have this information to avoid what has happened to us. Keep moving and exercising those muscles, tendons and liagaments. I am glad to hear they put you in physical therapy too! You have come a long way! Keep up the great work! Ask as many questions as you want that is what we are here for. Happy Holidays and Thank your caregivers for us we all know how much they do for us and get very little credit for their efforts! Happy Holidays!
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Julie the photos are great! Now learn how to put sound with those photos so we can hear them too! We put in a small pond in our back yard one year and for a few years we had toads and frogs in that. We would be in the house and all windows and doors would be closed. We could still here their singing in the house. I am surprised the neighbors did not complain. I am sure they just thought it was the birds singing at night and never thought of frogs and toads. We would go out and come home after dark when the neighbors were sleeping and we could hear our frogs singing at the moon! We would just look at each other and giggle. It was our secret that they were our frogs! Some nights we kidded about having frog legs for dinner the next night! I went to Ohio and was at a place where they have the bull frog contests and WOW were they BIG! I did not get to hear them sing but I am sure it would make us appreciate our little songs!
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I agree with everyone that it is part of the residuals. If it is something I have for the rest of my life I can accept this small residual, just as I am ready to accept my hands and feet being numb. I am not able to hold a plate with my hand it starts to cramp and it does shake. I don’t really notice it as much in other tasks but when holding a plate I notice I can bounce everything on that plate to one side! I just turn the plate around and bounce it back to the other side and put it down often to avoid the cramping. If I hold my hands out in front of me, I notice my fingers wiggle from side to side too. My Mom has Parkinsons and we put her in charge of milk shakes……hopefully it will be many years before I have to take over her job. She takes medications to control her tremors, I am just not ready yet to being on medications for a slight tremor but those of us that get them all the time. If they effect your life it might be an option, so check with your Doctor. The medications that she takes does not completely take them away just brings the strenght of them down to where she can take a drink without having most of it in her lap or on the floor. Also, try to carry your plate with both hands rather than just one that might stablize it more to keep those spills from happening. It does come in handy when hanging bells on the tree as decorations. Salad dressings don’t separate because you keep them slightly shaken. It is interesting to find out we are not alone and that we all have a few residuals that keep us wondering but don’t let them take over your life. People tell me they never noticed that I have shakey hands when I am doing crafts. I can do pretty intricate work even with the shaking. Yes, it does get worse when I am tired or mentally worn out. I do notice that the residuals do kick up when I am stressed by being in a different enviroment, but that is not going to keep me away from doing things with friends and seeing new things. I do admit I don’t travel alone as much as I used to. That being rattled feeling is not pleasant and I can relax more and listen to my body easier than when I am traveling and on someone elses schedule. Enjoy your Holidays and CELEBRATE!!
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Helga I have been paying such close attention to our election and had not heard anything about Iceland’as economy. I hope things change around for you soon! Take care and keep your hope up high and your spirits up. There is things they can not take away from us! Get well and stay in touch.
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Johnny I did not respond to the IVIG treatment as quickly as they wanted so they gave me the PP wiping out off the benefits of the IVIG. I think it just depends on the individual person and what their body responds to. I do know that timing is important when they start the treatments to prevent as much damage as they can. Your attitude is great and your sense of humor. I can see where it would get you in trouble too! LOL Keep posting to let us know about your progress.
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Johnny Mac you are one of the ones that will be a story that others will remember how your sucess made us just buzz with pride. The one about your Mom and your Father give us an amazing example how everyone is a survivor and our abilities are very motivating to the ones of us that are less fortunate and a reminder of how frustrated we used to be when we were at that level. You have made amazing recovery. I remember starting out on the machines with no weights. I was amazingly strong only months before my onset of GBS. From the waist down I still have some weakness that I am working on but it is frustration and hard work. You just have to remember we area all different. You did very well. What year is your Corvette? I just got one that was sold to a gentlman in Hawaii in 1985 and then shipped back to the main land. The next guy had it for 23 years and then I got it as an anniversary present in July. It is Light Blue Metalic with a targa roof and we got the optional smoked glass top and the blue one with it. Amazing cars to own.
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Linda H Thank you it is something I think that we can share and see progress at our own speed and it is not a competetion but we can celebrate the accomplishments of others and just them as our goals. I have got alot of ideas from this thread and have tried many of them because I had forgot about being able to do them before. Some things I could not do and some I worked on and was able to do them a few days after asking my body to do them. I love things I can do to music. That seems to give me a different kind of strenght. Good memories really helpd to give you hope!
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mdm I agree about the meditation with GBS/CIDP. I noticed that after my onset of GBS my mind was racing! Mentally I was not able to relax. With me doing the meditation along with getting back into my crafts and using my camera and just getting back home to enjoy things that I enjoyed I was physically exhausted but mentally I could not stop. I could not focus. With the yoga and the light meditation or purpose of that got me to draw my thoughts together. I got more organized and could have a whole thought without feeling pulled in a thousand different directions. I tried Tai Chi and also enjoyed the tape I had on Qi Gong is not as popular in the media but is my favorite. Many of the martial arts have good effects on relaxation and not moves that can hurt you from punching and jabbing and flinging your arms and kicking. I don’t enjoy the contact or punishment type things I like the resistance of the water in the water exercises. I also liked using a small ball to move around and hold as I moved. It got me to really focus too. I think the story that the intructor is telling you and the relaxing pace the music sets gives me a pace to move to that gives me that control that does not let me race thru the routine like the other exercises do. Daily it got to be a race to see how much I can do and how fast I could just go thru the motions before. With the Yoga and Tai Chi I felt and concentrated on the movement of each and every muscle envolved. I needed that because I had been totally parilized and I needed to reach each and everyone of those muscles, ligaments and tendons. It has payed off!
You can do a search of Tai Chi and there is videos of it on you tube and other sites. I am going to go and try to find the download you talked about! Thanks for the suggestion. Keep up the good work!
MOVEIT MOVEIT MOVEIT
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Welcome home! Did they announce the location of the next one in 2010? I missed the one in 2006 and thought I would be well enough to travel to this one in Chicago. I am going to keep that date open for the next one! Please tell us what you were able to get from this meeting!
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We hope everyone at the Symposium in Chicago has a good experience. Maybe they will hear some good information about exercise and GBS/CIDP.
[B]mdm[/B] great to wake up and find your post on this message board. I am exactly like you I enjoy the yoga and with all the different types being offered you have to find one that you will enjoy. I have video tapes and see yoga offered on TV each day and local classes. Between them and my changing ability I am able to work on the yoga daily. I love the freedom in the water in the pool. Either in the warmer rehab pool (94 degrees) or in the aqua classes in the big heated pool (84 degrees). Classes are always more fun. The ones they offer for the Seniors and Arthritis groups are good for GBS or CIDP people. I tend to get chilled in those classes if I don’t jog in place every so often to get warmed up. I am not able to go into the hot tub, or take a hot shower but just deal with that change since my onset.
It has been exactly 3 years since my onset and when I look back over the last three years. My rehab which is exercises to get you back into your home and able to do things for yourself. I enjoyed that exercise and the people that really worked with me to get each and every muscle, ligament and tendon moving. Safely we were able to get my body back to the new “normal” for me! I am able to do so much now. I still am working on several areas still. The lower body for me is still extremely weak. The numbness in my hands and feet is still there but I have learned to live with it and it changes from day to day. It does not stop me from being able to take care of myself and join others for the things I used to enjoy like crafts and shopping for groceries and cooking. For those that are just starting out this Journey, be patient! Just in this last year I have gained so much strenght, I found no matter how hard I worked it finally broke through and come back when it was ready. I was not able to rush that recovery and I can not put the frustration in that struggle into words. Keep testing yourself. Some recovery is very suttle and some comes back so fast. Beware you can get depressed when others don’t return as quickly. I used my reading and crafts and watching movies to take up the time where physical activity would have been. I made sure I got up for 5 minutes each hour and stretched and did some kind of exercise. Keep moving is the important thing and rest when your body say it is needed. I was always cautious to make sure I did not over do the exercise. I do wish that friends and neigbors would have walked with me or exercised with me more often. I was so weak and it come on so quicly that I did not leave my house by myself to exercise. I wish they would have understood the fear I had of falling or not being able to return home because I walked to for or did too much in classes. At first the fatique was extreme. It was not until just this year that disappeared in the Spring like someone has flipped a light switch. That was the big factor that made the biggest difference in my recovery and confidence and gave me more freedom to do house work and prepare meals without the fear of falling asleep during the cooking process. Good lucky with your exercise program and I hope that we can get others to realise the importance of exercise in our lives for both our mental and physical benefits. KEEP IT MOVING! 😀
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I have noticed all of the above things from time to time! I hate to make a comment at home or to friends. I feel like I am complaining about the little things too much. But I do find it interesting how many things are that I notice now. I thought it was just part of listening to my body more. But I agree it is weird and I have the same experiences as others:
[*]One stuffy nostril that feels like it is swollen. If I stick out my tongue or curl my tongue up behind my teeth I am able to breath better. OK everyone with a stuffy feeling nose stick out your tongue and take a deep breath!
[*]Hot Burning dust smell like when the furnace is first turned on for the season. Hot metal or burning smell does fit this too.
Right before the onset of my GBS (3 years ago) I had that metal taste in my mouth for a short period.
I woke up with a lot of goop in my eye like an infection or pink eye was starting. Now I have extra tears, I am always wiping my eyes. Seems just a slight breeze or the sun makes them tear up. I wear sun glasses alot of the time. When I get tired the eye lid will droop. I also get this dry feeling like my eyelid is hanging up on my eyeball. Not really dry feeling or not really a sand feeling but it is there and I can not ignore it. I usually just close my eye and take a nap because I know it is due to being tired.
I lost my ability to taste things and they told me the first one to come back was going to be salt. Also, I am not able to eat things and drink things as HOT and COLD as I used to like my foods. I never put ice in my drinks and I am not able to enjoy ice cream or even ice in my mouth. It feels like it is closing my thoat with a spasm. Then I go into a cough and start to choke. Not fun! My digestive track has changed too. I was not able to tolerate milk with meals. Now I can drink it with meals and I actually crave it during the day.
My Optic Nerve was swollen and this was dicovered during my routine eye exam.
I now retain alot of water. Swelling is a big problem. If I use anything that vibrates like the dog clippers or electric razor or driving the car or holding the sweeper, my hands swell as if there is a baseball on the back of my hands. Even in rehab they had a vibrating massage they would do on my hands and they would swell up like they were beaten!
As far as sound, I experienced the same things at the others. Jump at the sounds that would never have bothered me before. Radio and TVs are always too loud. Could not stand to be where a few people were all talking. I would just tune out. I could not concentrate on any of the conversataions it was just too overwhelming. I was able to over come this by getting out in public and out to resturants that were quiet at first or at that time of the day and then would just sit and desensitize. At times I still get overwhelmed like at the check out at a store but in resturants and events where there is a crowd I don’t get as bad. It does not mentally drain my energy either where it did before. Over a loud noise I don’t go into instant tears either. I now can go see fireworks. I still don’t do well if they shot off one bang and I am not expecting it. I really worked on getting this under control by putting myself in those different positions. I had to work hard on controling this and desensitizing my body from reacting to each and every noise. When in the car I used to sometimes hear a car horn or a bell ring during a song. How I don’t know if it is my keen hearing or they have added so much crap into songs than they did before. I get so distracted listening to the things in the back ground of songs like whistles and sirens and animal noises just to name a few! I hear doorbells and smoke alarms and they are the most irritating to me! I am glad to hear I am not the only one to discover all this about my body! GOOD TREAD! It is hard enough to understand all the residuals not to mention all this weird stuff.
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Now my friend’s daughter is being told by her Doctor that she should have the vaccinations before she goes into college. He says that the CDC now says it is ok. Just a year ago they said they would not give her the Tetnus Vaccination unless they assessed the wound first. They firmly told her that no vaccinations would be given. The only thing we can find on the CDC site is all the warnings about vaccinations and all the side effects that some of these drug have and the one that right in their advertisements say do not give to someone with autoimmune diseases. Or they come right out and mention Guillain Barre Syndrome. Please see what they say at the symposium on this topic and let us know. I am still confused about vaccinations and hate to dwell on this topic but with the Doctors not agreeing on this it still leaves a few questions left before I make up my mind and my friend is able to find out more about this too! Thanks! I would like to hear from others and what they have heard about this too!
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Now my friend’s daughter is being told by her Doctor that she should have the vaccinations before she goes into college. He says that the CDC now says it is ok. Just a year ago they said they would not give her the Tetnus Vaccination unless they assessed the wound first. They firmly told her that no vaccinations would be given. The only thing we can find on the CDC site is all the warnings about vaccinations and all the side effects that some of these drug have and the one that right in their advertisements say do not give to someone with autoimmune diseases. Or they come right out and mention Guillain Barre Syndrome. Please see what they say at the symposium on this topic and let us know. I am still confused about vaccinations and hate to dwell on this topic but with the Doctors not agreeing on this it still leaves a few questions left before I make up my mind and my friend is able to find out more about this too! Thanks!
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Pam ok you put us all in our places…….you win……..you are responsible for the big chill that just went down my spine. We got our first flurries today.
Sue we are in this for the long run. If you want you can send this stuff right back up north for us down here below you!
Linda I am really surprised this cold is coming all the way down there already. This is way too early for this kind of thing! Want some snow flurries? Texas is worried about their young crop of cotton with the freeze they are getting down there. Talk about an artic blast!
Today it was 40 here and 30 mph winds that just made me feel like going back to bed. I got a great idea for us to dress as the mascot for your favorite football team……most of those wear those funfur outfits with the big heads. Those should keep you warm. Could you see the kids on Halloween seeing us come to the door with one of those costumes on? LOL
Take care and stay warm.
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Linda I have not got my thought wrapped around flurries and you are talking about snow and Blizzards! OH MY! Oh just let me get thru Halloween and cleaning up the leaves before we talk about the white stuff. Once I can get my head in gear then the change in weather is easier to handle. Since GBS I have been embarrassed to go out in the Summer. I wear socks, sweat shirts and slacks and still am chilled. Now wearing layers I know that is is cold here. High today will only be in the 30s. Back up on Thursday and Friday into the 60s for Halloween. No wonder we can not adjust! Hey Linda it just can’t be us! Can you believe that before GBS I liked Winter! I still do but just in the right months! My calendar still says it is Fall. It it snows I will take a photo for you! November then I start to think about decorating the fireplace and hot chocolate! For now I still have not has a cup of hot apple cider. I do notice that when my feet and hands are cold they start to burn more. I keep tucking them under things and in my pockets. Oh how I wish I had those PJs with feet in them! Flannel is not warm enough I am reaching for the polar fleece already! STAY WARM and take care!
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Andrew thanks for bringing this thread back up! I was thinking I should do the same thing because I enjoy reading what others have been doing. It is not a competetion and I share the joys of what others have been able to do. I continue to think I will or should try that or this and make that one of my goals. I have not been able to ride a bike or walk very far. The eliptical is out of the question. I still have weakness below the waist. I am consistantly aware of the weakness. This has been the best Summer yet since my onset 3 years ago. I continue to get stronger and stronger. It is slow going but I can do it! My biggest gain against the residuals of GBS were this Summer when it was like someone just turned off the switch and the fatigue is at such a low level that I don’t feel it anymore. My brain is sharper in thoughts and my entire body just seems to be able to handle things better now. I still don’t walk long distances. I can navigate around a large store or the mall but I don’t usually go shopping. I am ok as long as I don’t do alot of standing and stopping to look at things. I keep moving which is also better for the aeroblic part of my route that was almost non existant. I don’t do inclines or hills and I still don’t do windy days. I know that with those muscles being weak that it does not take much for the wind to wear me out physically. It happens quickly too. I also find that if I have a grocery cart to push that I can walk farther too and at a quicker pace. I have not got anyone to watch me but it could have something to do with my posture without the grocery cart. Someone else might have thoughts on this too. I still take my cane with me but I don’t use it as much as I did. I am able to do more around the house also. It used to take me all day to run the sweeper in a room now I can do several rooms and even the whole house and even the steps during one day! So I know everything is improving. This has been a GREAT 2008! I am looking forward to 2009 and claiming it mine! Now to work on exercise to decrease my size! I am using this time to bring up my program to the next level. I am working slowly to bring up the quality of life without complaining about the time left in this year that is remaining. The rest of the year will go by fast and I know the warm weather can’t last. Today they are predicting snow flurries. Tomorrow they are saying less than an inch of snow. Oh, where does the days go?
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Before GBS I never got ill…..very seldom did I even get a cold. If I did it might last a couple of days while my friends were down for the count for over a week. After GBS I was frightened, scared and very paranoid. I did ask the staff at the hospital to be extra careful and they already were and gave me no reason to worry. But it made me feel better to just ask politely, once I was able to talk! I am very lucky that I don’t worry about catching things again. I don’t go looking for it either and use common sense like before the GBS but I have not had any trouble and think I have not lost any of my immunity! I have lost other things that keep me still struggling but I am continuing to get better! In a few days it will be my 3rd year anniversary and I can say I have been down to zero and I am climbing back up that ladder. My walking is weak so that slows me down. I don’t push it in the larger stores I depend on their electric scooters. In the house I do get winded but rest and take a few deep breaths……I think my breathing some come a long ways from when it shut down and I went on life support! Now all the support I need is from my family and friends. I have so much more to be thankful for. Be well and take care!
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TRUE ~ Full fall house cleaning is started. I am throwing it in gear to start decorating for the holidays! It is hard so just doing the living room/dinning rooms the past few years. I start with Fall and then add Halloween and then gear down to Thanksgiving. Take a deep breath and start adding and deleting to enjoy Christmas and New Years. I live them all up till the Superbowl. Spring clean and bring out Valentines and add the Birthday and Easter stuff as Spring comes. So I do each season and each holiday. I love to change things around.
TNP is into planning their costume for a Spooky Halloween
BTW Happy Holidays Everyone!
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Sherry Welcome! Are you at home already? Sounds like you are doing very well. I agree with the others to work with your Doctor and share your findings with them. Keep the communication lines open. I did have the pain as you did and it slowly gets better but you will notice changes along the road to recovery. I have the burning now and it does not last long. I have back pain but I have found how to get around that by resting often and then getting up and doing more things. REST is the KEY! My pain changed from day to day and even morning to afternoon. I always have had the needles and pins in my hands and feet but not bad enough to have to take any meds. I do notice that many many people here are not as fortunate as I have been. But we all share so many similarities. I felt changes all the time and I kept a Journal to see how I was really progressing. The muscle cramps, the zings and zaps, I took all those things as good indicators of change and healing. Hopefully you can get some relief and then start to see how you progress not week by week but maybe month to month or season to season. November 6th will be 3 years for me and I still have more healing to do but I am glad I found this group! They have kept me thinking very possitive! Hope they continue to do that for you too!
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Brrrrrrrrrrrrr Mondays high is 43 and they are forecasting flurries both days and might even have lake effect **** on Tuesday! Linda your making me cold! I do the layers thing! It was windy here this past week so I had to bring out the turtle necks and put my sweatshirt over them……..It takes me awhile before I get used to the cold and I can not tollerate the heat. Oh I am looking for my gloves now! I usually just pull my sleeve down over my hands or tuck my hands in my pockets. You do what you have to do! I don’t even worry about what others think…I am too busy stretching my sleeves and making them as long as I can! I can not go without a scarf. I will wear a scarf and a vest and keep my hands in my pockets too. But I still drive with the Window down in the car…..you can not tell I might have the heater on low! LOL :p
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Alison You might want to talk to your Mother and tell her that you know she is feeling extreme fatigue from the GBS and that all her muscles in her body are weak and need to be woke up by using everyone of them. Without that work on her part she is slowing down her progress to return home. Usually what they do is offer out of that 45 minutes movement to get all those muscles and tendons and ligaments moving. The tendons and ligaments have more memory than the muscles do and the nerves to the muscles is where the short circuits are. So you have a double edge sword here. They are trying to get her to move to get range of motion, breathing and strenght which will help with her balance as she gets stronger. Just sitting in that chair is strenghtening the core muscles and going to help her stand and be able to get up easier. I can tell you that just sitting in a chair for that long is very painful and when you are more than exhausted you have the kind of fatigue we have with GBS you want to lay down. Also, your mother might be having such terrible pain from the damage to the nerves that she might need to be on a pain medication. When I was tested to be moved to the upper level of rehab I had to walk ten steps by myself. Until I could do that they would not accept me. There was other things too. I HAD to wear my street clothes, I was not allowed to stay in my PJs all day. I had three people coming in and working with me. One did Physical Therapy as soon as I woke up and had breakfast. I had to do my exercises in bed. Then the second person would come in and do Occupational Therapy. Tasks to get me doing things for myself like brushing my teeth and combing my hair and getting dressed and sitting in the chair. Also some days I worked in the shower getting my own hair washed. I also had to fill out my own menu for the day and sign my name several times to show them I was gaining control of my hands despite them being needles and pins and numb. The third person would come in and do Physical Therapy taking me out of the room in a wheel chair and later having me walk to the gym. There I would do all kinds of things. My own laundry, cooking and getting in and out of the tube and car. I had to show them I could do tasks that required household gadgets and games to gain more control of my muscle movement. By the time I got to the rehab floor I was doing 1.5 in the morning and an 1.5 in the afternoon and eating and sleeping inbetween my visits to rehab. To come home I had to do all those things and more and be able to come up steps to make sure I could get into the house when I got home, even if I did come in the garage. There was many steps to get me into the house. Then I still had OT and PT come to the house along with a nurse that visited every other day. That was about all I could handle. At that point I still had extreme fatigure and needed 20 our of 24 hours of sleep. So until your Mother follows their suggestions she will not be allowed to advance to the next level. It is also important that you check to see if she is having depression issues because you know what your Mom’s attitude was before she come down with this ugly disease. See if you can have Friends, People from the church or her bowling league or card club to send her cards. Visit if they can for only a short time and in small groups. Talk to her about what you plan on doing for the holidays when she is at home and feeling better. Give her possitive feed back she needs to look at this with a possitive attitude. She like movies or music or to read books? Have someone make sure those things are being taken to her. Tell her about us on the internet and tell her she has a big group here that has been where she is now and we got better but it is a slow process and you have to help yourself get well too! Also, send to the foundation for their pamphlets for the patient and care givers there is alot of good advice there. Also, make sure she is able to see and does not have double vision like some of us have had with the GBS. I actually had so much pressure on my eyes that they hurt to touch and I did not have the ability to make tears. I also had bleeding inside the eyeball that would wipe out my vision when I started to move my head. Ask her to explain how she is feeling and when she can not explain it come here and have her Doctors also check it out. Some Doctors will give you an email address that you can use when you live farther away. It is important to open and keep open the communication with all her Doctors. Also you might want to see if there is a local liason in your are that could come in and talk to her to show them there is hope! Also there is many famous people that has Guillain Barre Syndrome and that might be something you could tell her about and she can use them as a role model. One that comes to mind that I was told about was Andy Griffith from Mayberry RFD, Matlock and other roles. Good luck and give us reports!
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Sorry we have to go thru any of this stupid residuals. I had a problem where I leaked stool and did not even know it. Also leaked an smelly oil and had gas. Well I did! I know what you are going thru with the lenght of time it takes to get to the bathroom too! I had a bladder control problem too! Then if I had a digestive problem and not much of a warning, I had a potty chair next to my bed for any time I wanted to use it! You can get them at most pharmacies and thru my rehab Doctor I got mine along with other aids for the handicapped. Shower stool that got me over the edge of the tub and a walker. I also got a cane. Later I bought myself a wheel chair incase we walked a little bit too far or I stood a little too long. My husband could go get that and I knew he could get me back to the car if needed. I never needed the wheel chair but all these things made life so much easier and took some stress from the worry. Hope it can do the same for you!
Be sure to talk to your Doctor they can show you exercises and movement you can do in bed or sitting to get those muscles moving again! They helped me with all that before I got out of rehab and I continued to do those exercises because they do help those muscles. Life is much easier now! 😎
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Liz thanks so much for your Halloween pictures! I enjoy this and have one to add for everyone! This was pumpkins I carved a few years ago with friends. I think I made the wolf and the spider.
[IMG]http://i441.photobucket.com/albums/qq139/LadyKITUSA/Halloween2001pumpkins.jpg[/IMG]
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Linda you and your family and the rest of the kids and their families too! What a terrible accident. Here in Pennsylvania we have a seat belt law but it does not enclude buses. Probably the same in your area. According to that video there was all minor injuries. What you tell me about your grand daughter I don’t call that minor. I think they should rething the seat belt laws. We have them for airplanes but not trains or buses or boats. Also they put 3 kids to a seat usually and I think that is too many when it comes to larger students. I will continue to watch the message boards for updates! Take care of yourself! Thank goodness for Sherk! LOL 😀
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Got the new camera and it makes up for my old skills! Here is a photo we took of a local covered bridge. We went for a drive and an afternoon picnic! Just wanted to share! Thanks Norb!
[IMG]http://i441.photobucket.com/albums/qq139/LadyKITUSA/DSC00199.jpg[/IMG]
I think it looks like a jigsaw puzzle, don’t you?
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Linda I think that all of us should ask for a treadmill for Christmas. I think I am going to put in my request too. Hubby could also spend some time walking on it too! I have dropped my membership at the health center and all my rehab is over so I think that is the route to go. Continue to get well, I am so happy things are starting to show you results already! 🙂
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Hello buddy! How are things going? I read all your messages and am glad to hear you are doing much better just from the sleep you are getting. When recovering I took an change in feeling to be a good sign that things were changing and getting better. Keep up the positive attitude and they will get you back to eating good meals soon! Stop talking and let those areas heal and let that voice rest. Knowing you, I bet you are having a hard time doing that! LOL I will keep you in my thoughts and prayers! Behave and remember to smile at the nurses they are the ones that can get out a larger needle! You don’t want to make them angry! 😮
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WOW I think we have all experienced a GROUP HUG! Make sure you pass it on to your darling caregiver! I know he is worried and not getting his proper sleep being in a hotel. Get home soon and then you both can rest better! Glad you got to catch up on all the big hugs we left for you! Now work on getting well soon! Don’t push too hard it will not speed up the recovery! Sounds like your team of Doctors have lots of respect for the GBS and are taking good care of you! Continue to listen to them and smile for the nurses they are the ones with the shots! 😮
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What great photos! I love the little guys grin while riding around the house. His Mom is going to have to watch that little guy! You can tell he likes “speed” already! When he can talk more I bet he says “Faster! Faster!” LOL The holiday photos are really wonderful make me feel I was there too! 🙂
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I got the new camera with my check from the government to stimulate the economy! We put our heads together to buy one things and come up with the new camera. So with the other money that is left we can sink that into gasoline for the Vette to go out and take photos. Little local trips are all I can handle right now. The car and the camera get me outdoors. He has a plan but also is covering his interests too! LOL Like the kid that bought his Mom a football for Christmas! 😮 We have one night a week that is date night and this gives us just some other options when we go out. We can take a nice car and take photos for the memories! He told me he will keep the car clean and slowly work on it to keep it running. It does need a new radio. Get this it has this huge speaker in the back and can rock the neighborhood! Why people do those things I will never know! Bad thing is there is no room in this car for my German Shepherd Dogs! 🙁 I always bought my cars so the dogs could fit in with all their gear! Oh and no room for the children and grand kids! OH WELL! LOL 😀 My Son is 33 so he begs to drive me around! LOL No grand children! Maybe next year I will take it to a few car cruises. I really like the old cars and the people that restore them! This car has been garage kept and never out in the rain for the last 23 years. We don’t wash it we DUST it before we go for a ride! Strange concept! LOL Nope you will not find me doing donuts in the circle up the street like Kevin Harvick or doing Drifting in a Yellow Corvette like Cindy McCain. I can not afford the new tires every time! But I can dream! Maybe I can find a sponsor like Goodyear or one of the other tire makers? LOL Amazing how many people i have met that have old cars in their garages that they are restoring that I did not know was even there! It has been a nice Summer and I am looking forward to getting it ready for next Summer! Take care everyone! Live out those dreams!
NOTE TO MY GBS FRIENDS: After riding and driving with the noise and vibrations from the motor I am wiped out and have to come home and nap! I blame it on the GBS but maybe it is just old age? LOL It is amazing what effects our bodies that would not before this. Who would have guessed a loud noise would do this to our bodies? I just keep doing things to let my body heal and over come these obstacles! Sooner or later after it is healed I can forget about what it does to my body and just enjoy the sites!
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Erin it sounds like you did TOO MUCH! You might only be able to do half that or even a quarter of that. Remember to only walk half the distance you want because you have to turn around and walk back! REST and go back and maybe start out a little bit slower this time! If you are using the pool then you want to do even less because the water is helping you along. It is very easy to over do it! Sorry you had this experience. We all have learned by our mistakes! Take care and let us know how you are doing after the next visit to the pool. I think everyone forget you are not exercisiing to loose weigh here and not doing alot of cardio yet. You are trying to get your body to move and work on balance, breathing, range of motion and slowly on strenght and cardio. The movement in the water and the resistance of the water will start to build up your strenght.
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Johnny Mac I hope you get to see my car! Kinda weird it was bought in Hawaii in 1984 and shipped to the states in that next Spring. Boat ride took it 4 months. My car has been to Hawaii, not me! Love your car what year is it? I am the third owner of this one. Really thanked the second owner for taking care of it for 23 years! How did I do Norb? Linda he has created a monster!
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[IMG]http://i441.photobucket.com/albums/qq139/LadyKITUSA/SeetheUSA_1.jpg[/IMG]
Hello Everyone!
Hello Everyone!
Jan I think you have answered your own question about red eye! Some of the newer cameras do have that strobe type flash that goes off several times before the actual flash. Some of the photo programs are better than others. I use Photo Shop Pro and all you do is add brown where the red, green, gold or silver shows up in the eyes. There is also a pen that you can use on the photos after you print them out but I am like you I don’t like some of the programs or processes. Taking the photo from the side rather than a straight on photo does help with this reflection tool I just took some photos of the deer in the back yard and they had monster eyes too. It will be interesting to see what others suggest!
Hello Everyone!
Hello Everyone!
Linda I don’t know what was missing or what we twisted in that tututorial but I think Norb needed a laugh and skipped a step. I read on my mirrow that objects might appear to be closer than they appear. I never could understand that warning. Why would they put a BUMPER on a car without telling you what it was for? So maybe we should put a warning on your photo of Pumpkin and my photo of the Catepillar and the Canada Geese. Honey I shrunk the kids is not going to work!! How about this message contains GODZILLA? LOL OK, so they were POSTER SIZE! Linda I enjoyed your photos! I did not see anything wrong with them! GO FIGURE!! LOL 😀
Hello Everyone!
Hello Everyone!
Hello Everyone!
You do have us all on your side. Thoughs and prayers are being sent all thru the day as your message is read. More and more will say a little prayer but might not send you a reply! When you are ready for the tavern let us know I will stop buy and fill up all the bowls with pretzels and peanuts! Take care and have a quick recovery! By the way if you smile at the nurses they are nicer to you! But it will not stop them from visiting you at all times of night! Get home soon so you can get your rest!
Hello Everyone!
Erin, Everyone is different and has different limits so you need to find where your weakness is. Those are the areas that you can not rush they will need time for the nerves to heal before the message from the brain gets efficient. Meanwhile what I did was work on range of motion of every joint from head to toe. Just this Summer I had a big increase of my reach behind my back that I could actually reach up to the middle of my back but not above that to fasten my bra. I still have not able to touch my fingers from one hand to the other fingers to the other hand. Reaching from below and from above with either hand. I still am using a towel and stretch band to increase that range of motion. Even now I get cramps when I hold or reach a certain way the hands cramp up. I keep working on getting them stronger. My breathing has really come a long way from having a colapsed lung to the present time. Swimming did help with that. Also the little bit of resistance in the beginning from the water really helped and then I moved on to the aqua weights. Also the water bouncing me around helped with my balance and gave me a freedom to move around that I still can not describe to people. But coming out of the pool was like someone was piling weights on my legs as gravity took over. It was very easy to over exercise in the pool. But it did help with stamina. The stability ball did also help with the core muscle when I did not go swimming. Strenght come much later in little steps. I went from just being able to lift a sippy cup to now not thinking that a gallon of milk is too heavy. I had a injury to my shoulder and I worked on that very hard to get it to unlock and that took 8 months. Now my upper body strenght is almost back to normal but I am able to lift things to the top shelf, but can not lower the object down safely. It comes crashing down. I still need to work on that weakness and that other set of muscles. My lower body is still weak and that was the first area to notice the weakness from my onset. Walking long distances or using a treadmill is still too much for me. I can walk in the pool and hold on the side and kick my feet and side step from end to end of the pool to get all the muscle groups moving. Steps take alot out of me still. Hills are not my favorite and once my legs get stronger I know my balance will be better and it is alright now! Just not when the wind blows I feel unstable. I have no strenght to resist wind but do have it in the pool against the water. Those that mentioned that warm up and cool down exercises are so right. You want to avoid injury at all cost! Remember that exercise time does not have to be done all at once. If you were to break up your daily routine and work out 5 minutes each hour that you are awake doing one area or another, it all counts! Also make sure you count into that also the stuff you are doing that day. I do less exercise if I have to go to the store to grocery shop I take that off my walking and leg lifts. Remember to work the upper body, lower body and the core. If you are having back problems work on the abs they help the back strenght. Remember to rest whe you are tired and don’t over do exercise. Don’t hurry thru a routine..actually a slow routine is better for us and having to hold a pose rather than to jump, kick and jab and run thru your routine. Try Yoga? It is a good place to start and will show you where your strenghts and weakness are. I used to have a tape and once I got down on the floor I did only the floor exercises. I started out by doing only the standing or sitting exercises. I am still not able to ride a bike that is too repetitive for my body. I need more variety. Remember do an exercise that you enjoy! Keep up the great work! 😎
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Norb Thank you for your help! I hope to post a few photos in the future. I know now to make sure I check the size of the photo!
Liz Thank you for the offer, but I still would like to keep in touch with you and find out about your new location. Your going to miss the NY Winters!
Did you start a Halloween collection for us this year? If you need help with emailing attachments let me know!
I enjoy the graphics as much as I enough reading everyones posts!
Hello Everyone!
Hello Everyone!
Norb, Thank you so much for the excellent tutorial. Just trying to see if I have learned enough to do this.
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This fat little guy was found in my herb garden. I hope he has become a beautiful butterfly by now. 😀
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Great job of catching items I would never have thought of taking a photo of. Now I am going to do more experimenting. If I don’t like them then I can hit that delete button. I loved the one of the 710 cap! My new digital camera got me out in the yard this Summer! I even was brave enough to get over to our local county park and take some photos of the buffalo and other residents of the game preserve. This was a great Summer! Best one yet since my onset of GBS! Congratulations!
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I had the information needed and told the Dentist not to give me Novocaine or Lidocaine and they did not listen and, ofcourse, we waited and waited and the shot of Novocaine never worked. I was given another shot and had the limit of what was allowed. I was sent home. One hour later I was numb but it wore off quickly. I went back in and told them that I should not take Lidocaine and they gave me a shot. It took a long time for it to take effect and my lip went numb but I could feel that area where the broken filling was to be repaired. Again, I said was that the other kind of shot and they said no it was the LIDOCAINE. I told them, I told you I could not take Lidocaine. Second time they did not listen to me!! We drilled without anything because it was a small filling. I had another either cavity or broken filling and went back in and this time they gave me a shot of Carbocaine. Guess what!! It worked. I might add that I told them all this in the beginning and they did not listen. I am not a happy camper! I am glad it was not something I was allergic to! I went in again in July and they gave me the shot again of Novocaine and it worked. I have come to the conclusion that they don’t read the patients records and we have to be our own advocate and make sure we double check on everything any more. I had even printed out the article that was on this forum for my records and had given them that. I don’t know what else I could have done, except read the label!. Knowledge is power but staff that listens to their patients too would be nice! 😮
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[B]jan’83[/B] I also just noticed I have a black eye again. Right next to my nose. Sometimes I get two black eyes and I think they are just from washing my face or rubbing my nose. I keep forgetting to tell the Doctor about them….I hope that clue would have him find out that is wrong with my Sinus. I have a friend that had a sinus infection that he ignored and it ate a hole into her nose from her sinus. They just did her surgery today and used fat from her butt to plug the hole and used some kind of glue to hold it in there. She has to lay on her back in the hospital for 3 days. She will be out of the hospital in five days.
[B]Linda[/B] You can see water leak marks on the ceilings and where a person threw a pencil up and stuck it in the ceiling tile. A few marks that I don’t want to know what they were. But nothing like you are describing in your hospital. That is terrible. Sounds alot like what the Veteran Hospitals were like. The USA has to take some pride in their jobs and the health care system has to also take measures to make improvements. Too many infections that are obtained in hospitals to let stuff like that.
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Jan while in the hospital for 9 weeks I had double vision and the eyes were swelled and sensitive to touch. I could not see well in a mirrow and did not even recognize myself when I did look in the mirror. I do know that I had very bad hemoraging in the eyes to the point the blood would gush across my eye and block my visition each time I moved. Trying to walk was terrible I would have to keep stopping until the blood would clear enough for me to walk again. I had no periphial vision and that come back slowly still coming back. It was amazing to look at my charts to see the field of vision was improving with each visit to the Neuro Optomologist. I don’t remember any blood shot eyes but I would have had it checked out. Eyes are very fragile please go to your doctor. Probably the worse thing they could have done in the hospital was to tilt my bed where my head was down lover than my butt to slide me back up in the bed so they did not have to lift me. Some times it would not work and they would have to call the lift team to move me but they would leave the bed in that position. I could feel the pressure in my head and eyes but I could not talk. I would just pray they hurried so they could set my bed back up. Once they tilted the bed and it hit the wall above me and plaster come down into my eyes. It left a big hole in the wall. They just laughed and said “I won’t tell if you don’t tell”, to each other. I wanted to leap out of bed and smack them both and say “what about the plaster dust in my bed and eyes?”. Even after that they would hit the lamp on the wall with the bed. I am not even going to tell you about the ride down the halls on the stretchers, but I think the staff in hospitals should have to pass a drivers test for traffic in the halls! They should wash the ceilings too! LOL 😮
Hello Everyone!
Well now that you mention it, I have trouble with my eyes too! After the onset my eyes were frozen wide open. The slightest breeze they water like crazy. Which I would think is normal but this is extreme watering. The Sinus turn on the water works and I choke on the post nasal drip. My tears seem to be saltier than normal and dry up around my eyes and I don’t notice and it just does not wipe away it has to be washed away. I had goop in my eyes one morning, about a week before I had my onset of GBS. It was like the stickiest stuff. I thought I had an infection. it was never that bad again but I had puffy redness all around the eyeball that looked like I was getting pink eye and I was just ready to go to the doctors and it went away and then the onset of GBS come on with a vengence. I still have over production of eye fluids that seem to be set off with the slightest stimulation. Light, breeze from movement. When I am over tired then I get the droopy eyelids and the sand peebles in my eyes. The outer corner of the eye seems to be chapped or dried out and sting…nothing is there and it is not red. I take care of it by wearing sun glasses with closed sides when outdoors. During the day I wipe my face with a warm cloth several times a day. I notice my husband tears up more and thought maybe it was due to age. Now you have me wondering. I did go to the ENT specialist just a month ago. Tests for allergies come up with no allergies. Funny how this thread come up just as I am fighting another battle against the GBS residuals. It will be interesting to find what others find. I have the same type of drainage that is dry and sticky in my sinus too…..no infection, just a different consistancy. Will be interesting to keep up with the thread to see if others have got answers from their doctors. I have another appointment coming up shortly with the ENT. He gave me nasal sprays and not touched this goop!
Hello Everyone!
Hello Everyone!
Hello Everyone!
Welcome Rena! You have found a great group of people that will help you thru this. We think possitive and use humor as our tool to keep us smiling. Since GBS takes time to heal you will see from reading posts that we all share the same residuals. We also differ so much in how we were treated and how we are recovering. Rehab has got many of us back to a point where we can function pretty well and take care of ourselves. The GBS still slows us down and we all have learned to be patient with the healing process, which takes time. Having a good relationship with a Neuro and your famliy doctor is a must. Sounds like you had a very speedy recovery and was out of the hospital and walking. I hope your healing continues to come quickly tool You case sounds much more like the one that my friends Son had. His was from the waist down and he bounce back quickly. Now his only residual is that when he rakes leaves or works in the yard he can feel that his body from the waist down gets tired. After a few days those residuals go away. Take care of yourself and listen to your body.
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Hello Tim! Nice to know that it is possible to use an I Phone to read the message boards. I am sure there are care givers out there that would like to know about them as a possiblitity for us to send our get well wishes right to their hospital beds when those laptops are too large for us to handle. I have a question for you. Do your hands cramp up when using the I phone. I still have trouble with my hands cramping up when reading a book or holding a fork or balancing my plate at a picnic or infront of the TV. I get terrible cramps in those positions.
Nice bi plane! Here’s my new ride! Hope the upload works! And the photo is not too big.
Edit: Sorry I guess it did not work! I will learn how to do photos someday!
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GARY!! LOL I just come in to see what the heck all the noise was in here! I usually just stop in and put out all the pretzels and nuts. I think we need more than that for this group so I left a tray of wings in your favorite flavor right on the end of the bar for everyone to enjoy! Have a great holiday weekend.
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Linda I sent you a private message. But to get GBS a second time is very rare and I don’t ever remember anyone here having a third case. But CIDP is different it is the cronic form of GBS and it never goes away. it is only maintained to give people a qualilty of life. Usually it gets compromised with other autoimmune illnesses too.
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crlyn I had my teeth cleaned exactly a month before my onset and that is usually the time frame they tell you to go back is one month. My team of doctors think mine was a sinus infection that I ignored and it got better before I called the doctor for meds. There are so many things it could be and most do not really know what infection they got to bring down their immune system to let the GBS take its course. Sounds like you are really doing well so early in your illness. Keep working and never give up on the rehab. Just this Summer I had some really good progress in my healing and ability to do much more this Summer. Keep up the good work and be safe and there is nothing wrong with using a cane when you are tired like I do or using the walkers or rollator or a wheel chair for assistance to let us gain more freedom in our lives. There are so many aids that I used during my recovery. I wish I could find the inventors that did such a good job in working on an idea to let us gain more freedom. I send them and our caregivers many thanks and much love! The teams of Doctors and Nurses and Aids and hospital staff and rehab staff that made our progress possible. THANK YOU ALL! They were all good at finding what worked for my and my recovery and still are working with me!
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Hello Everyone!
MDM you are in the early stages of healing. When I come here with the same things as you had I had read that the body needs horizontal rest to heal the nerves and physical exercise or rehab to keep all the joints and muscles stretched and workingl You will notice that range of motion is a big thing with GBS. Use something like Yoga to keep your body moving. Strenght training for me did not work until the body was healed enough and the nerves were carring the signal to the muscles. But I did keep things moving until that process took place. Listen to your body and do what you can, the rest will fall inline later. I was told that the covering on the nerves regenerated at a rate of 1mm per day so for the average 6 ft guy that is a long recovery. But what that did not say is how badly the damage was to that area and also to the nerves. Everyone is different and GBS and the variants are something that can not be rushed to heal. Be aware of what you can do at home and what you do today and how it effects you tomorrow. As far as working I am not able to return to work yet but I know many have returned to work. Depends on the stress level and the physical and mental requirement your job requires. See how things develop and to give you a time frame of when you can return to work…go grocery shopping or sit at the computer or drive your car. See how those things wear you out. I am not able to be away from home that long. An 8 hour day would do me in. I am just now getting to the point that I feel I might be able to work half a day. But that is me! I would not be able to do the orginal job but I might be able to do a sit down job on the phone or computer. I am not able to stand for a long period of time yet but I have been to stores where the cashiers are allowed to sit on a stool. As far as lifting that strength is starting to come back, but the ability to take things off a shelf is still not there. I can reach up and get something off the topshelf in my kitchen or closet but after a certain weight it crashes to the ground. I am still working in rehab to strenghten areas not yet back to a safe strenght to let me be out in public transportation or steps. Each day my abilities are not consistant with the week before. One day I can walk down the hallway to another office and the next week I can not walk even half that distance. So listen to your body and talk to your doctor and rehab team to see what your limits are. I was told not to expect 100% recovery and they are not able to tell me at what point my body will stop getting better. This has been the best Summer for me so far! I am able to do more and know that I have had some really big jumps in progress just in the last 6 months. I can get up without having to pull myself up on furniture or having assistance if I should fall. Just that has made me more independant knowing I can recover from a fall in a parking lot or in the middle of a room or my yard. The fatigue has really got so much better that I don’t think of it at being a factor in my daily life now, but going back to work I am sure that would increase to be a factor. Working or having a busy schedule, I don’t think I would recover from today to be able to finish the same level the next day. I do rest in between days that require more activity, but for the adverage day I am doing much much better with this new lifestyle. My vision has finally returned to a good level that I don’t have to have my eyes tested for a year now! So as you can see I have had big leaps of coming back this year. I sincerley hope it does not take anyone else this long to recover so they can perform their dailiy duties and resume their occupations. I can see that everyone is recovering differently. Be patient others will be here to post their experiences. Welcome to the boards and I am glad you started to post here after reading. Don’t be shy! Many of us are experiencing the very same as you, we just have not asked the same questions yet.
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I agree with all the above post but when I was ill I had double vision and it was hard to focus on each person that was talking. My head was running in high gear also and over stimulated. The body was paralized and the brain was spinning! The rapid onset of fatigue also did not help. Movement and sound was very over stimulating…..I could feel myself just crawling back into my head and listening to the conversation from a far place. Like a mouse in the corner. Sudden loud laughs and sounds would make me jerk away after I was able to move. Now that sensitivity has gone away I am able to enjoy being with groups of people too……Sad that I lost 5 very close friends since 2001. It is sad that you miss the good ole days but it is now fun to make new friends that I have more in common with. My interests have changed like my friends. The best friends are still around! Now that I am doing better I am the one that seeks them out and calls a girls day out!
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I had the IVIG and then they wiped that out because they felt it was not doing a good job of stopping the attack. So they gave me the PP or PE. At 10 weeks I started to loose the double vision. I seen a Neuro Otpo in the hospital at my request and seen him each month for a field of vision test and exam. Each month but one he was able to see my eyes were healing slowly. Then he moved the appoints to every two months and then to three months and then to ever four months. When I got to 6 month exams I was able to start seeming big differences in my vision. Now I am scheduled to go back in a year. I still have the double vision when I look up at a plane or down to the ground without moving me head.
As far as the needles and pins and the tingling that changes from day to day! I feel that is the way I measure the regular healing process. If I over do it the residuals last more than a day and I report anything that lasts longer than that to the neuro by keeping a Journal. Listen to your body is the best advice. If I feel well every way but a cramp in my leg or back pain then I concentrate on the feeling well part. I don’t panic. I look back at my Journal and the others posts on here about our residuals and I can see I have recovered nicely over the years. I still struggle from time to time and my new normal is a very different lifestyle. When the healing process stops with the GBS then I will declare victory. I can say the residuals from the GBS were stronger than the effects from the MFV. Keep possitive and be patient!
With CIDP I agree with the others you need to be intouch with your doctor and learn how long you can go without a treatment of IVIG or Predisone. Pain meds will give you some comfort when you find the right combination for your body. You can manage your life now by being aware of how you feel each week or month. I agree right now you are in the very early days of healing and you will notice many many changes in your body. Keeping that Journal is very important. It will help you get on a routine allow you to figure out when to exercise or work on range of motion and balance and stamina. For now your body does need plenty of rest!
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As I take a deep breath and wipe away the tears from frustration I think what a great loss to loose anyone from these forums. Dawn Kevies mom I am glad you took some time to reflect on how much it would mean to us if you did come back. It is not until someone leaves that they are told how much they are appreciated and how much you mean to us. I have this illness. Your constant posts to others have helped to educated me on how different we all are and how we need each other to understand ourselves. These forums have given me the strenght to not give into this illness and dig dig dig to get better. be patient and ask questions. Make me know that I can help my Doctor understand what I am going thru….since none of us are the same. I have gained the respect from my Doctors and they have gained my respect. We have both had to take a step back and look things up. Make phone calls and know when we are in over our heads. We are only as strong together. We can not afford to loose contact with each other. Every voice needs to be heard and we have respected that from every angle. It is just that here we don’t think we are always right, we know it is what we found worked for us and the others shared with us on some of the quick fixes that just don’t work. I may not reply to your posts or others posts…..it is because I agree or I feel I am not qualified enough to comment or it just does not pertain to my condition. But I read! Sorry there was a misunderstanding and hope we grow stronger from it! Thanks for all your help!
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Welcome Cathy your Brother has a very special Sister! You did not mention if your Brother had received IVIG or Plasma Exchange. Those are used to stop the attack on the mylin sheath. The GBS will start to reverse on its own rate and body functions will return with coaxing. It might take a few tries so tell Andy to be patient. I told my family to call the ambulance ata 911 to get me out of that hospital and into the one up the road! So I know what I put my family thru when under the effects of morphine. Just be patient. I can tell you that your brain is on over drive while your body is not working. You will see him very sensetive to touch which might cause pain. Swallowing will come back but it can not be rushed. Occupational Therapy and Physical Therapy is a must. It can not be over done or rushed on the GBS patient either. I know exactly where your Brother is. I was there just 2.5 years ago! Make sure they are doing eye drops so they don’t dry out. I had to request them and also they gave me a different sauve for night time. Warm compresses helped me with the pain and discomfort in the eye from the eye ball actually swelling. Tell him that talking around the trache puts a strain on the heart (this is what my Respitory Doc said) so don’t do it often. Let those vocal cords heal. Ask Andy what he needs…..he might need more than what he lets on. But don’t ask questions all day long. Just answering questions can be very exhausting. Tell him to relax and try to take a nap you are there for him. Read to him or let him listen to music. Just be sure you ask if it is too loud…..many are effected with noise due to the nerves in the ears. Ask away on the boards. Vent when needed! Did you send to the foundation for information on GBS and also a booklet for Caregivers? Both can be really helpful. Don’t worry about long posts….. remember GBS stands for Getting Better Slowly……tell Andy to be very patient. Have him show you his daily brags as he is able to do things again. I had 4 to 5 each day as I was able to move my pointer finger….lift my hand….wiggle my foot….move my leg sideways….OT and PT helped me daily get a list of things I could show my husband how I was doing daily. Being able to use my sippy cup was a big deal….his daughter will be happy for Daddy when they tell her that brag! Most important is to keep things possitive. Take care and write often! Also you might want to contact your local liason for GBS and have them visit or talk you your family.
Hello Everyone!
He will not ask a doc is so common. You feel rushed in the first place and are trying to remember every word they say! Plus ask yourself if you understand and try to remember questions. I write down the questions. I also will slip the girl a list of questions to make sure the Doctor covers them in his talk. If hubby says he did not talk about it then I ask for a written answer. They take my list of questions seriously the next time!
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They advertise a gel on the TV I think it is KY gel or something like that and it produces heat sensation and is just not for those that are having problems but want to experience something different. It is an over the counter item. OK, I will go to the pharmacy tonight and get the exact name!
Also remember, that area is a very complicated area where lots of nerves from the legs and back or core join the spine…it is hard to sort out any damage quickly. When your hands are numb that effects many other stimulation or acts as a big distraction….same with the feet. So we have alot going on and just not one problem that has a black or white answer. This is where your partner might have to help you too! Some days might be better and the senativity might not be there after a long busy day or when you are tired. Time of the day might be the key! Experiment!
Oprah had a talk show today about SEX and one woman got a new house and furniture. I only got a Corvette so I have some work to do in this area! LOL I think the key is to relax and experiment. One way of telling how sensitive you are is to use a shower adapted sprayer and run the pulse down your leg. It is strange there is places on my legs that don’t feel the water spraying there. Places on my back and arms and head….so think what is going on in our bodies!
Hello Everyone!
I am not sure that they meant it will cause or make the GBS come back. I think it makes you so tired like over exercising that you might have your residuals kick up or have a set back the next few days for over doing it.
Remember that not only the nerves but GBS also effects the organs and hormones are not in balance like everything else so you are fighting that along with the fatigue and not to mention some of us are older and decreased hormones before the onset.
Lets face it our whole body is effected and all systems take a punch from this illness.
I would not hesitate to contact a specialist if I needed to find another way to be fullfilled. You owe it to yourself and to your partner. But I think if you have a good partner they will listen to what you need and you both will find a way to communicate. They might even think it is their fault. Make sure you tell them what you are going thru and what you are feeling. Experiment!
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Linda I think we all get our education from the internet. I had trouble swallowing things that were not thick like milk. Water did not quinch my thirst and also having trouble with things that are cold bothering my throat. And burning myself on things that are too hot. I have found things that help. To water I add a slice of lemon or lime or both. That does help. I also try to change what I drink all day long…..hot tea in the morning to wake me up and then juice later on. Water with lemon with my lunch and maybe some warm drink in the afternoon in the Winter and a Smoothie in the Summer. Then Iced Tea that I make for dinner……When I get to go to a resturant I try the speciality drink they have either a lemonade or slush or save money by just having water with a two slices of water…..I don’t even use the artificial sweetners! YES I agree they are scarey! I do the same with foods too. It is easy to get into a rut and buy the same thing all the time. I don’t feel bright eyed and bushy tailed…..weekends are hard on me…..I usually take Mondays off….day of rest and do what I want!
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Hello Everyone!
From what I have experienced and I have talked to my Doctors that are CLUELESS in this department. “I can not do anything about” it is not the answer I was looking for either. I am willing to do something about it myself to keep my partner in my daily life. I made sure I got a back rub each evening and gave one. Thank you to my caregiver become daily Hugs and Kisses. A pat on the back and a short back rub was also in order as we passed in the hall to let him know I still cared. A poke and a pinch was playfull, but they were also part of the daily events. It was like a game! We added humor to our daily courtship. Loving become more than the actual act. We have turned a leaf in our lives that we have overcome. Actually, I found he does have a very romantic side after all these years! So when we do try and get together if we are not sucessful we still have the rest of the experience to keep the flame going. I speak from 35 years of marriage just this past July! I am not able to swing from the chandlier yet but I am still working on it. Don’t give up just find what works for you. I have thought about getting the creams available just for fun but have not done that yet. It is just nice to have some of the pressure gone to always have to have a big event each time we are together. As the nerves heal and sensetivity comes back then I feel I will do much better, but intil then it is like starting all over with a partner I love, to see what works for us. He had a stroke so we have worked thru this before and now he is having patience with me! Hang in there and don’t let this be a stressful situation in your life. We have all been there!
PS and I have not told anyone this here before. I must be doing something right he bought me a Classic 1985 Corvette for my 35th Anniversary and every Sunday night we think of a reason to take it out on the road and be kids again! I drive 😎 and he sits there with a big smile on his face! 😀
We even celbrated when we used up our first tank of gasoline! Life is good! Last night it was a trip to McDonalds for a late evening Big Mac, Fries and a Coke! We got an invite to bring our car to their Car Cruise! He was all interested until she said that he should bring his dancing shoes! He does not dance!! So in one mintue she talked him into it and then bursted my bubble by telling him that! Talk about TOO MUCH INFORMATION!!
Now if I only could figure out how to post a photo of my new car here!
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Vampire? Nope you just have your nights and days mixed up like most of have done.
This is where good sleeping habits come in.
1. Sleep in the bedroom with the tv off! That lets the mind calm down. You will find that we tend to get over stimulated from any noise or lights.
2. Watch the intake of caffine before bedtime. Evenings are an easy time to have that warm cup of coffee or tea before you go to bed and that soft drink while watching tv. So I made sure I did not eat after a certain time or drink all evening because then I would be making runs to the bathroom all night. Something else to keep me up. Yep once a wake then I could not get back to sleep!
3. Get yourself a Journal and take advantage of your mind being hyper. I kept all my stuff together. Menus for meals, exercise routine done, doctor appoints, grocery list and things that needed done around the house. Even bills that needed paid or when the car needed maintance. Down to gifts and cards for holidays and birthdays. This list was good because I could just hand it to someone if they asked if they could do something for me. I arranged the page the same each day. Circled the times I took my pills and drank my water and ate my meals and did that exercise. I made sure some one fed the pets and changed the water bowl. I also found this kept the household organized so I did not feel that this ir that was not getting done. That kept my head from swimming thinnking about what I did not get done that day. It become what WE did not get done that day! NO BIGGIE!
4. Getting yourself on a good daily routine did help. I made sure I schedules long naps during the morning and afternoon. After many months and even a year I could go longer in the morning and skip that nap or skip the afternoon nap. Kinda like what a toddler goes thru. I tried not to sleep in the evenings when family was home from work. That way I was ready for bed at bed time.
All takes work but it does work. Remember there are two kinds of exercise. Mental exercise like reading, talking on the phone and Journaling takes care of that hyperness that we find when we lay down. Those times our minds are still racing. I played games later on in the recovery just to use up mental energy or got on the computer. Physical exercise is an effort and you have to listen to your body! You have to keep moving. Stretching, range of motion and balance and breathing exercise might be all I could handle that day I had off from rehab. But I did not do it all at once I fit it in during the day…..all day long. 5 minutes each hour. Then I would go sit down or get something done around the house or play with the pets.
I ate at regular times and really worked hard to keep myself on a routine. That way I did not get frustrated and get my days and nights mixed up. I told people that were calling to check on me that I had times when I took calls. If I was sleeping I would not hear the phone. As I need less and less sleep I would use that time to make doctors appointments and call friends.
When you have meds that give you side effects and make you tired you have to adjust the times you take then with your daily schedule. Even an Asprin has caffine in it! Chocolate has caffine in it! But it is not always the caffine it is the nerves working overtime to heal that usually gives you that hyper feeling. Hyper feeling with Fatigue….it is a weird feeling for sure! I say that and even the Doctors just look at me like…..what? 😮
Get well and post often that will use up some of that extra energy! I did notice that your doctor visits are 3 months apart? That is a good sign of getting things under control and healing too!
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Hello lh48 and welcome to the forum. I have not posted for a while. Yep add me to that list of people that experienced the same thing as you have. If you are not sure then do a follow up with your doctor. We have a tendancy to blame everything on GBS and need to question some of the symptoms because they do turn out to be something else. But so many of us have experienced this I think also it is GBS related and gets better. I don’t experience it as much now and did not think about it till you posted your question. Take care! Good question!
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Great thread! Brought back so many memories and feeling of knowing exactly what we all go thru. Time in the pool and the current sweeping us away! You were at the water park and I was in the rehab pool. I just told the people just push me out of your way, I am like a ship in the current with no engine to guide me around. But we DID IT! We did not leave our fears take control and keep us from atleast trying things. I read all these mesages and I can see we are all strong people. We all have our ups and downs. We worry about how others will see us. We all wonder “How do I explain this to my children?” There are still things that my Husband of 35 years and my Son (33) are clueless. I will have a brag and show them something I can do and they look shocked! They tell me I did not know you could not do that! When do you stop explaining? My big brags this year so far are I have less fatigue that just used to knock me down! I can sweat! I can do more in the yard this Summer in the flower beds. I can get up if I am in the center of the room or out in the yard without climbing up something or someone! The vibration has really almost disappeared, which used to eat up alot of my energy. I can now reach up in the back and adjust my bra myself. Still can not bring anything down from the top shelf, that strenght has not come back yet. But I keep testing it and still have things crash to the floor! When asked to do something, their reply is “you still can’t do that yourself?” I always laugh and say “Someday I will!” And I believe that! Just from your posts in this thread it shows how strong we really are. This is a nice group of people that really understand! Nice to have a group that can talk, laugh and cry with you! We do more talking and laughing here that really is a tribute how much time we put into this illness. Glad everyone was here for me! Now I can be here for others. I have learned so much from the CIDP frinds! Most of all 1. Patience and 2. Don’t sweat the small stuff. And 3. Don’t beat yourself up it could always be worse!
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Oh count me in on all of the above. I am find and then someone opens a door and the change in the tempature throws me into coughing and choking. Just that fall or rise in tempature or humidity. I have walked into a doctors office and been standing there in the a/c thinking this is nice and comfortable and I got “brain freeze” I could feel the cold air just going up into my sinus and POW the pain! I can open the freezer or frozen food display con trigger this but I just have learned to stant to the side as I open the doors. But it is weird to be this sensitive. Expecially for me that oved the heat and loved being outdoors. Also loved the Winter sports and now I hate to even open the door in the Winter. I never wore shoes and now can not be without socks day or night. BUT FINALLY this Summer, I am starting to sweat again and feel the heat like I did before. I am able to finish my meal at a resturant, rather than take part of the meal home because I am freezing. It was hard to find just that in the middle comfort zone for me! But I did it. Thanks are getting better slowly! I am measuring my improvement by Summer and Winter now and can not wait till the snow flies! OK maybe not rushing that just yet! I have not lost my mind completely! But I am looking forward to next Summer because I had such a great one this year! Even in old age the years are getting better and better! 😎 Just hang in there and don’t think you need to explain to people why you are wearing a hooded sweat shirt in the middle of Summer! Just go with a light color don’t worry your shoes don’t match your purse! Unless you have a purse that looks like a sneaker!
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ZBRD The fact that your Doctors did not feel your return to exercise after the first IV had any negative impact on your recovery. When you exercise to the point like you did and over do it….any set back might not have an impact on your permant recovery. But it is going to have a big impact on your mental state of mind, depression and attitude. Not to mention the steps back you take to get your body back into healing again. Not everyone has such a big relapse, I think yours was so dramatic because you ignored the effect it was having on your body when it started to make you reduce your distance. That is pretty dramatic. Just listen to your body more and consider what the doctors think. Your case is going to be very different than others they have had or will have. 9 months after the onset is not a lot of time in the large scheme of things. Just to have the IVIG stop any attack so the body can heal the covering on the nerves and start to mend any nerve damage to the nerve itself….is going to take awhile longer. No one can tell you what point you will heal to or if you will be able to do any or all of those things. The fatigue is one thing I hear people that have been ok for years and then do something that really is too much for their body. My friends Son is an adult with children and when he plays too rough with the boys or rakes leaves he can feel the GBS slow him down. It is not the whole body he had it below the waist and that is where the fatigue effects him. Some people have gone on to do a mountain climb or play a sport in college. I think it just depends on how smart you are with your body. Doing too much will catch up with you so you might want to just hike and golf but not do the jogging. Or take up swimming because the boyancy in the water is not as hard on the body as maybe jogging. I am sure there is some adjustment you will have to make for your new lifestyle. Want to walk 5 miles a day? Divide it up into very small distance and do that for only 5 minutes each hour rather than try to do it all at one time. That way of pacing yourself will pay off in the end. It might be too early for your body to start stretching out the time between IVIG and until your body repairs the mylin sheath to the nerves you are leaking so much energy thru the coverning of the nerves out in to the body and who knows how much constant signal is getting to your muscles. As that heals and the signal gets constant it is going to be hard for the muscles to work properly and effeciently. Atleast that is what I have experienced. You need to learn to be patient. Remember that this process can not be hurried up with steroids they are just an aid. Your body is going to get better slowly. For now concentrate on every tiny muscle, tendon and ligament to make sure you stretch them and keep them moving. Yoga might be the best exercise to get your total body back into shape? I have not heard of anyone that has had the IVIG every week that again is something others can respond to also. I think you need to see at what point you feel you need the next dose and communicate with your doctor. Some get them every 6 weeks, others can not go past every 4 weeks. That is a schedule that comes from your communication with your doctors. Keep a Journal that will help also to tell them how the exercise and good nutrition has helps. When you did something that was too much, or a long day how it effected your body. How long it took you to recoup. Notes can tell the doctors alot about how the meds are working. I am sure others will let you know what effect the steriods have had on them. Keep posting your ideas they will help others start thinking too! If you have GBS and not the cronic form of GBS (CIDP) the prednesone is not going to help. The type of IVIG or brand might be something to consider? Have you talked to your doctors about having Plasmapheresis instead of the IVIG?
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Another drug to questions is Ciprofloxacin hydrochloride. That is what was thought to cause GBS in my friends father. Below is a part of what I found on a page about the drug and the side effects….some of these things could be GBS or mistaken for GBS like symtoms. Scarey! Even the brought on case of diarrhea could be something that GBS could slip in behind.
Remember to stop taking Cipro and see your doctor at the first hint of an allergic reaction (see “Most important fact about Cipro and Cipro HC”). Also call your doctor if you develop diarrhea. Antibiotics such as Cipro occasionally trigger a form of diarrhea that needs a doctor’s attention.
[B]Rare cases of peripheral neuropathy (changes or disturbances of the nervous system)[/B] have been reported with this type of antibiotic. [B]Contact your doctor if you experience muscle weakness, paralysis, pain or numbness, a burning sensation, or a “pins and needles” sensation.[/B]
You may become more sensitive to light while taking ciprofloxacin. Try to stay out of the sun as much as possible.
People taking Cipro have been known to suffer torn tendons. If you feel any pain or inflammation in a tendon area, stop taking the drug and call your doctor; you should rest and avoid exercise. You may need surgery to repair the tendon.
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I have thought about getting a scooter too. I still don’t have the stamina to walk long distances. Especially in public places like theaters and museums and the zoo. I go to Walmart or Target and they have the scooters available to use. They have the basket infront and are low enough for me to get on them. I see some of the chair type scooters seem really high to me. I have gone to our K Mart and they only have one scooter and it is not always there for my use. I feel guilty also using it incase there is someone that would need it more than I do. I have cut shopping trips down to avoid getting too tired. I would like to see more stores have benches placed around them for when I do feel tired I can rest. They have made some of these super stores so large that it is like going to an exercise class just to get something that is a necessity. I did buy myself a wheel chair so incase we do get invited to an event or place where we can not park right near the location my husband has a way to come get me and take me back to the car. I have not used it in public yet. Have not had that occasion arise, but I can tell you just having piece of mind that it is available has given me freedom knowing that we would not have to call for professional assistance. The people with GBS and CIDP need to recognize that we do have to pace ourselves daily. Each day is a different day. I am always thinking how I can conserve energy. I sometimes avoid the steps and walk out the door and around the house to the back door. Or from the car I walk up thru the yard and to the door to avoid those steps. you would think I have to climb a mountain doing the steps. But for independance and safety I would recommend that you check into getting another form of transporations that suits your needs! Happy traveling! 😎
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Hello again ZBRD. I am glad you returned to give us an update. Everyone is different but we have have many things in common. I am sorry you have to go thru this setback and I hope you learn much from the experience. I think your Doctor should have supplied you with more information too. If you took rehab they should have adviced you to listen to your body and don’t over do it. I think you did too much too soon too! I am 2.5 years after my onset and I am not able to walk very far. I am still just getting back some of the basic abilities that I had lost. I am not able to get up into the standing position in the middle of the room without crawling over to furniture. And then that was a struggle. Just in the last 6 months my upper body strenght has come back. Something clicked and it was like a light switch had been flipped on! Now just this week I am able to reach up the middle of my back with one arm and reach down with the other hand to adjust clothing. I had been using the silly rubber bands to try and increase that for years….now it is back to where I can work more and continue to see good results. They told it that you Get Better Slowly and I thought I would beat all records. But I took a steady approach to exercise and only did what I think I could do. If I felt over taxed I backed it down a little and advanced slowly. If there was something I could not do, I did not forget about it I just kept testing myself to see if there was any change. I worked to get every tiny muscle strenghtened and worked on range of motion and breathing and balance. It did come back, but we did not set any record! Hopefully you will find out what works for your treatment and what your body can handle without having a set back. Have they thought about using PP instead of the IVIG? The IVIG did not work for me and they then wiped all that out with the Plasma Exchange. Steriods do not work with GBS so that will be a good indication if you have GBS or the cronic form called CIDP. Don’t give up and keep the communications open with your Neuro. Stretches will keep those ligaments and tendons and muscles moving…that is all you need to do for now. Let the nerves heal. The sheath of the nerve heels very slowly. I have been told only 1mm per day. For a guy that is 6 feet tall that is alot of months. Keep possitive and keep in touch!
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Welcome Linda…..every case of GBS or CIDP is so different…but we all go thru similar things like depression, frustration, struggle, fatigue. It is a slow process for most to recover to a point you can deal with. We do understand and are here for support. Usually we all have gone thru the process of eliminations before we get a diagnosis. Mine started in the ER with a diagnosis of MS…..days later I was on life support. I was lucky to have a team that worked together and was intouch with other teams from other hospitals. Thru their determination they were quick in a diagnosis and started me on the IVIG but that did not seem to work to stop the attack to the mylin sheath so they started me on the PP. 9 weeks in the ICU and rehab I am doing well. I am not by any means back to 100% but I do have my home life back and each Summer I am able to do more and more! I hope a diagnosis comes swiftly to you and you are able to get back to a point where you feel educated and are able to listen to your body and know when you are ready for another round of IVIG or steriods to less complicate your life. Hang in there! Try the geographic game they do here it can be entered when you have time to contribute a post and followed to give you some ideas of where you have been and where you have yet to go! Terriffic gang here! Welcome to our family. Hugs for your caregivers too they have to be frustrated too!
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Dawn I agree it was responsible of them to mention it but also a big obligation. I am not sure if many pay attention to the side effects of drugs. I hope in this case they start. I also wonder how many kids that were entering college that had to have them and put their hopes and dreams on hold. I do remember many here that were trying to struggle thru their college classes. Wonder if…………? 😮
Cheryl Thanks I thought it was worth posting here…..many might be in a position to receive their shots right now before entering college and should have the facts. Maybe this publicity will keep one child from not getting GBS! But if it is required and the changes are increased since it is a side effect, not sure you have an option if you want to enter college! Kinda a Catch 22 situation. Sad……Worries me on how many will enter this forum with their story of having to postpone college due to getting GBS. 😮
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Kelly Congratulations. While you continue to celebrate here and over the weekend, I just want to tell you thank you for sharing and showing that not all results of those tests are a bad thing. They can also give you peace of mind and let you worry about other important things too! We all have worries but you just made mine a little lighter to by sharing some [B]good news[/B]! Just give Emily a great big hug and kiss and tell her you love her! I am sure she enjoys seeing you smile it gives her hope! [B]Stay possitive! Attitude is contagious![/B]
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Oh this thread brings back memories of being in the hospital and my hands being super sensitive. In Occupational Therapy they worked with me daily to desensitize my hands. I would feel (blindfolded) rice, macaroni, beans and tell them what I was touching. Cottonballs and pom poms where not too bad but the other things just sent me thru the roof. The rice felt like shards of crushed glass. The macaroni felt like they were making me pick up screws and the points of them were cutting into my hand. Beans felt like wet river rocks. What a weird experience! They tried massaging my hand with a cream and vibrator and that was torture but I tollerated it until that night I could not sleep my hands swelled up like a baseball was under the sking and then they were asked to back off the vibration. Later we tried it again and again same reaction….my hands swelled up like balloons. After I was home my feet gave me some weird sensations too. Stepped on a dime and it felt wet. I looked down as I yelled at the Yorkie…..she just ignored me! Water from the dog bowl on the kitchen floor felt cold and like I was going to slip walking on that ice! My carpets felt like sandpaper and the cement stone on the patio felt like someone was removing my skin. The went grass felt like snow and ice and I was afraid of slipping. Hot cement was agonizing and the crushed stones in the driveway were not tollerable. I too can only wear one pair of New Balance shoes since my onset. But I have to tell you that this Summer has been great and I am able to do more and more! I will have to make a post soon to tell everyone how great this year has been in my recovery. I am getting better by leaps and bounds after last year of a slower recovery process. Each Summer had been better than the one before. I am celebrating being able to pull weeds this year. My hands burn after I do, but I am able to participate in more and more this Summer. I am able to use my new camera too! Never give up! IT is very true when they say the recovery is slow. I appreciated that honesty when I first visited this site…I did not really know just how slow the body heals. GBS does also stand for Getting Better Slowly! My advice is to not avoid doing things just keep testing how things effect you from month to moth and year to year. My Journal has really helped show me I am still recovering even after 2.5 years.
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I was sensetive to both hot and cold. Showers had to be just the right temp and then I could not stay in them because the pulse of the water drove my nerves into vibrating. I could not do the dishes in hot water like before….I had to add cold water or let it sit till I could tolerate the water temp. If I left it in the sink to cool for too long I could not stand to reach into the cold water to pull the plug. Weather wise I wanted to go outside with out a coat and just wear a sweatshirt…..wore that sweatshirt and long pants all year long. I knew my both was not regulating. Heat in the Summer did not feel hot. I was that little old lady in a sweater all Summer. I would look around and I was comfortable in my long pants and sweat shirt and they were in tank tops and shorts and I had tennis shoes on they had sandles. My feet were not even sweating. I did not sweat until this Spring when we hit a few 80 degree days and OFF come that sweatshirt with a big celebration. Now I throw off the covers at night and shed the layers. It will be 3 years in November. So they mean you get better SLOWLY! I never realized how slow they meant. The nervesand mylin sheath near the spine are the ones that control body temp and they heal faster than the nerves or mylin sheath in the feet and hands. Hope this helps and just listen to your body and make the adjustments to how you feel. Heat makes it harder for me to breath too. Does not matter if it is humid or not but humid is harder usually. Take it easy during those times of the day!
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Jamie I agree!! Great idea for a thread! Makes you count your blessings and realize there are many great things in our lives in spite of GBS. This only proves that those that keep that possitive attitude and struggle to still enjoy the things that we love can live life just a little bit better when we do things we enjoy. Just like they say. Enjoy the simple things in life. I enjoyed watching the wild birds at the feeder after I got the new sliding door that I could open. The other one was old and frosted between layers. Wheels were worn out and the door was ready to be replaced. I could not open it to let the dogs out in the fenced in yard during the day while hubby was at work. Within a week my Hubby and my Brother installed it and made life easier. I would just sit in the other room and watch the birds and deer. Made my day go faster. I can not tell you how many times I fell asleep just looking out that door from the couch. Each day I would come here to check out the jokes and comments that others posted about something funny that happened to them or progress they had that day. Each little things was a big brag for me. Slowly I caught movies I never would have watched and I really did enjoy them. Music was a biggie that took me back in time. Doing genealogy and scrapbooking also kept my mind busy even if the body did not keep up there was a lot of planning to do. Now with my new camera I take a day here and there to just go to the park and take photos of things at the parks. Gives me a reason to move around from place to place at my pace. Sit and just watch for the right moment to snap that photo. Seeing photos that ones have posted her got that photo bug in my active again. Each and every post has made me think. I can do that or I can not wait till I get to do those things again. They always gave me goals! Visiting here I was never let down! Typing improved too when I post all those long messages. Funny thing is I listen to people and love to watch people. I don’t talk as much as I type. Guess that is why I have enjoyed watching my improvement by Journaling to see not daily results but how well I am doing from the early days I spent just looking out the window until I fell asleep. Thanks Jamie for making all those good memories come back! We are survivors! There is a quality to my life and I see it is in others lives too! Thanks for sharing! Great group and good thread.
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I agree with what the others said….you might be back to functioning like you did before but not as effeciently as you did before. One day you might work on upper body and another work on lower body and the third day core. Or a smaller routine combo of all three which is what I have done. After doing a day of rehab or weights I rested and maybe just stretched and did water routines. Worked on balance, breathing, balance and range of motion rather than strengh. The water gave my support by releaving weight on the joints lettting them rest and also the muscles. It is important to move daily but not over do it to the point where you feel the burn. You should exercise as it is to maintain a condition not to join a competetion. Listen to your body it is telling you to back off or slow down. You don’t want to do damage to your body that can not be repaired. Find out who much time is spend on physically training the person with GBS to get their degree. If you have never had it, it is hard to explain to someone what you go thru. Fatigue is different than being just tired or even exhausted it is hitting the bottom. Fatigue is not like a car running out of gas it is like that car hitting a brick wall and then trying to travel cross country. When your personal trainer is not given all the information you are not doing yourself any justice. Please be careful with your health.
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I can remember being so happy to find this forum and see the names of the regulars doing their best to answer our questions. This is another person that took a lot of time to help others and will be missed greatly! I am sure his family and friends miss him, but they will never really know how many people that Doc really has helped. Forever in debt to a great person you will be missed by many! 🙁
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See Jamie I told you they are wonderful here and do understand. Have you contacted the foundation and had any information sent to yourself? There is a very good book for caregivers too in that package. I know exactly how you feel as the others do. My Mother has never visited me or offered to help in any way. Just yesterday on the phone she asked if there was anything she could do. So it is not just you that is not understood by others. It takes special people to be caregivers. We don’t thank them enough. Some don’t say much but they volunteer their time. Some give us a phone call to check on us, but don’t visit. Some will shop for us when ever needed. Many don’t take the time to listen but I think that is just not in GBS but also in life. Many live in a fast paced life. WE live in slow paced bodies for now. Give it time to heal and you will get on a routine that your body can handle. Hugs! Have a great weekend! :p
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Welcome to the people that have just found this forum. I hope it will help you as much as it has helped me. I found that not just reading the posts but also reading the “On the lighter side” posts and the photos and games kept me sharing with the humor and wit of the others. Seeing them enjoy sharing what they have found just was like receiving a daily get well card from a friend. People do not understand that just because you look good on the outside that you don’t feel so hot on the inside. Recovery takes longer than we expected. I can not keep up to my friends. Many many times they don’t innvite me to join them. That hurts but I understand. Even family does not understand and that hurts, but I understand. I was like this with friends that were ill and I did not understand how they really felt. Now, I know the next time to have patience and call a friend more often. I have moved on to doing several hobbies that get me around people and out of the house. I use my library more and have joined a few clubs that have regular meeting that I can attend or read about in their newsletter. Hope you find something to help you keep a possitive attitude too!
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I also have a similar situation. I am not sure if my nails are softer as much as they are thinner and bend and flake or peel easily. I have trouble with my toenails splitting right down the middle…so something is lacking maybe in our diets? I never know if it is GBS or old age causing some of these changes. Will be interesting to see how others answer this question. Also, I had thought that since I don’t have any feeling in the tips of my fingers that I bump or touch things harder than I used to before I can feel them touching things? Your right about having bigger fish to fry. But we are getting better slowly!
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Jayant> CONGRATULATIONS! I am glad to know that life has been good to you after GBS. I am being patient and still have some fatigue but for the most part all the healing is still in progress and I slowly am seeing changes. I am plannning on doing something when I grow up and glad you are a great example! Welcome!
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Liz this is great news and I wish you all the happiness! The climate is right and no more snow! Ofcourse you can check here with us and we can always tell you what you are missing! I have friends that live near Orlando. If I am in the area I might just call everyone to a meeting someday for lunch!
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My heart goes out to all the members of this forum that have lost a very precious member of our TEAM. What a great TEAM member and TEAM leader. If anyone can think who was patient and very active and full of short posts and good answers it was GENE…..so sad for us and my heavy heart goes out to your familly and friends, Gene, they are loosing a GEM!
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Also, you can request that your FIL be seen by a Neuro Optomologist. I found out after being released from the hospital and seeing him twice in the hospital that I lost much of my field of vision. But that got better and is almost back to what it was before the GBS. He was the one that told me that it was the hemoraging that was happening. In the hospital they never checked my eyes except for dialiating of the pupil. Ofcourse, the reflexes were slow in my eyes and not exsisting in my arms and legs. What the others have added about the drops and eye patch was true with me too. I was given eye exercises to do with my eyes. I was to focus on the trim around the doors and follow that with my eyes very slowly. Then the grid on the ceiling and make my eyes follow letters on the grid.. H Z S T O N W and then the whole alphabet. That helps retrain those muscles to the eye just like rehab works with the upper and lower body. Keep reading and I am glad your FIL has you as his advocate! Caregivers are the greatest assest with this illness!
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Chrissy I agree have them give you a trial month with no further obligation. See how you do doing that time.
For myself I got alot of good use out of the pool exercises to increase range of motion, balance, strenght and better breathing control and lung capacity to mention a few. Water work is great because it take the stress off the joints. Warm temps to the water help too. There is classes for all kinds of groups. Arthritis to Aerobics. I took Ai Chi and many of the martial arts classes in the pool. Also get yourself a Yoga tape…..go thru and try doing all the positions and keep trying. At first you might only be able to do one to their 8. Later you will see that you are increasing your abilities and actually enjoying your achievements. To stick to an exercise program you have to enjoy it. So pick something you enjoy! Steping thru the dance steps to your favorite song on the radio and reaching for the moon and stars. Smiling at the Sun. Slowly increase what you are doing. Remember to warm up and cool down after your exercises too. Doing just 5 minutes an hour will add up to over an hour a day of exercise. Also check out the tv there is many exercise programs on there that you can tape or you might even had the exercise channel to pick some programs from. I will watch a program and only do the floor exercises that day and the next day I will do the sitting exercises and then the next day I will try and do the standing exercises so I am not jumping up and down. Try and create for yourself a program that works the upper body and the lower body and the core muscles. There are many things you can do so enjoy!
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Yep the concentration comes back and I kinda forced it to come back with taking on more and more responsibilities around the house as I felt I could handle. Reading concentration was a problem. Also remembering what I had read. So I read a book of jokes. Once joke at a time. Reteaching my body to remember the jokes was a challenge. But I did have GBS Brain Fog! I would see things needed done but did not do them. Watering a wilting plant or empty pet food bowl or water dish. I would see it was empty but I would not think to fill it. I was lucky I had a caregiver that watched me struggle and took over all the household duties that I did not get done thru the day. I would day dream about what needed done and even think about how I would get dressed. I would fall asleep and wake up and not be dressed. I stayed in my pj’s all day. I wrote everything down on a note that had to be done. I used that method to help me keep on track. I tried to get one big project done a day and a bunch of tiny ones. Dishes, laundry, dust were big projects. But if I only did one load of laundry a day I could handle that, I would wash the dishes by doing just the cups and glasses at one time. Then later I would do all the plates. Later I would do all the silverware. I was getting things done this way and felt like I was getting somewhere and helping out around the house. Instead of doing all he windows I did one window a day. Cooking was a problem if I could not make it during 20 to 30 minutes. Fatigue was terrible. I was afraid to go sit down for fear I would fall asleep and a fire would start. Those tiny projects were about as much as I could handle but also contributed to my getting my strenght back and were improving my self worth daily. Set small goals they all add up!
Now I don’t need as many naps and my house is running smoother and even the yard work is getting done. I still need help but those are still those big projects that I wanted hubby to do before I got ill. Have a great Summer! Get out and smell the roses.. 🙂
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I had terrible coughing while on the vent and trache. I did end up with pneumonia but they caught it quickly with the first spike in my body temp.
I got the breathing treatments and their effect give me a few hours of rest. A also had trouble with the whimpy muscles and could not move so every two hours them come in and turned me to avoid bed sores, but also to move the fluid around. I also kept my room fairly cool, the heat would dry my throat and that would irritate and start the coughing. I was told that there was a vest I could wear beside the air mattress that consistantly moved. The vest would pound on the chest. I was glad that I did not have that done because it did not stop when the coughing does and it is hard to get rest. The GBS left my body also very sensitive to touch and I think it would have been too painful to wear that vest.. But it was an option.. Also, I was not able to sip on water so they had an IV in to keep me hydrated too. Chap stick was my friend. Take care and ask questions!
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Welcome to the forum and to a new addition to our family as well. I would like to let you know how much we think of our caregivers and your patience and dedication. I am sorry your FIL has to go thru this frustrating illness. I agree that the chart will help you communicate and help all of you REST..
I did not have the GBS just above the waist. My whole body was paralized and I received IVIG and then the did not think it was stopping the attack and I was still getting worse and ging on live support so they started the PE. After al that I still got worse for another week but then the GSB started to reverse. I was not blind but my eye muscles were paralized and kept my eyelids open and the yes did not focus on the same object for 10 weeks. I also had hemoraging in the eye ball and the pressure was very painfull. When the blood moved it blanked out my vision but that cleared in a few minutes. I seen double of everything. If he is able to move his legs that might be something you can use as a signal too. Make the left foot circle for get the chart and paper and pen out.. Let him REST also. REST is going to be his best friend. Fatigue is over whelming from this illness. Keep the attitude possitive and a happy enviroment! Sounds like you are doing great! Most important ASK Questions both here and be his advocate at the hospital.
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Dave I have tought the same thing and I had read one place that it was more common in the North Eastern United States where there was a colder climate. After coming here I see that is non sense and nothing to back it up. I know many people all around the world and north and south. Many live in tropic areas. I just happened to get mine in November and I live in the North East. But don’t feel you are venting or being a pain. Questions and ideas are how things are discussed and even cured! This is a great meeting room where we can toss around ideas that may some day lead to the true picture of this illness. Best of Luck to you and also a big hug to your caregivers. We can not tell you how much respect we have all developed for all of our caregivers. Being here you just have added to your family!
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Congratulations! I too know the shoe dilema, only being able to wear tennis shoes. I have to wear white because I can not find any in black in this area. I think it was Sears that said they could order black ones for me. Nice brag to read today. March on forward with your progress! Stand tall in those heels! Throw out the socks with the rubber treads! OK maybe not! I got used to them keeping my feet warm!
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I would mention it to your neuro along with the numbness…..especially if you think you are getting worse. If you are over doing it you could be feeling the residuals kick up. I would always error on the side of safety. Also there is things that they can give you if it is distrubing your sleep. We all feel the fatigue and know we can not loose sleep!
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Kinney How long since your onset of GBS?
I still have tiny jerks in my legs mostly the feet all day long but I notice them the most when I am in the recliner. I have more like a vibration and something else that feels like chills but not really twitches. I did get cramps alot during the night but all that stuff has gone away and been replaced with other weird things. Might want to mention it to your neuro the next time you go back. Nothing surprises me when we have GBS. But don’t blame everything on the GBS better to get it checked out.
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Hello Suzon and Welcome to the family! I have found that my residuals change alot. I have good days and bad days where the numbness goes from my wrists and ankles to only the toes and then somedays above the wrists and ankles. Some days there is burning like they are on fire and other days they burn like they are frost biten. A few days they were so close to being normal I was concerned that I had something wrong. I am albe to do steps carefully and just watch where I step. No reflexes in the knees yet and the Doctor said that is not important. As you start to see that those things will not keep you from doing things and you can function you learn to ignore the residuals and just go on with life. They are a constant reminder that you had GBS and life goes on. Remember that the first things you noticed from your attack is the last things to heal. The nerves heal at such a slow rate of 1 mm per day and for a 6 ft person it takes years to go away. I am glad I am short. After the first few months the residuals take longer to notice they are getting better or gone. Before I measured things by the day or week or even the month…..now I can tell by my Journal that I feel better and have become stronger over the last few months. Just be glad you are getting better slowly. It could be alot worse, just look around you in rehab. Don’t hold back from telling people how you feel inside. They can only tell your looking great on the outside. Don’t think of it as whinning you are sharing so they understand your fatigue and early bed time. You still have to pace yourself so you don’t have a relapse or set yourself back. Some may never understand….your friends will listen and your family will soon discover you are not the way you used to be. It just takes them longer because we have spoiled them, now they have to spoil us! Just give your caregivers a big hug and let them know we need them more than they understand. Stay possitive and lean on us for support!
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Shirley I am going to add this information to the forum too. I don’t think it has been mentioned. To a degree I think this is caused by the atrophy in my case. I have not come back even now as strong as I was. I may never get that kind of strenght back. But due to that weakness the muscles in the legs have had some degree of atrophy and they do not effeciently help the body move the water out of the tissue.
The stiffness and pain I feel in the morning, is in part, due to swelling or the Lymphodema that I have in my legs. Once I start moving around the fluid moves around and is pumped by the action of the muscle and tissue, out of the legs. Make sure you don’t have any swelling.
I do know that the ligaments and tendons do take a few minutes to stretch and work out the tenderness too. So I am sure with the inflamation of the nerves that this is part of the GBS. Also, if I use my hands to twist or type or run the sweeper they burn and swell. Rehab would make my hands swell like a baseball each day. Especially if they over stimulated them with vibration or massage. So sometimes what we do for one thing will make another thing act up.
The best part of all of this it is very wise to listen to your body. Over doing anything when you have GBS can cause you to have a relapse. It is very hard to keep a possitive attitude when you take take two steps forward and three steps back. That is well documented when someone returns to work too quickly, they slide backwards. So listen to your body and do only what you know will not set you back. Spreading out chores over the week will get them done without any back sliding. There is no law that the laundry has to be all done in one day. Give those muscles time to build up strengh but also give them time to rest. The key is to get well and stay well.
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Hi Matteyrae, Welcome to the forum. You will find many people here with suggestions, information and just the need to help others get thru this experience. I am so sorry you had to deal with a slow dx. I agree with the others stretching may help, heat from the shower might help and just a good massage might wake up your legs in the morning. I might also start to get cramps and that might be the lack of potassium so a bananna a day might help and eat your broccoli. When ever you need help just post your problem and someone will end a hand. Sounds like you have a great caregiver behind you too. I still walk the walls in the mornings at times when I am stiff. It usually works out pretty quickly. When I do too much during the day and don’t get my REST then I notice my walking suffers the most. Sounds like you are going great! Remember GBS also stands for Getting Better Slowly.
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Guys this is kinda my computers [B]LAST WILL AND TESTAMENT[/B]! I am going to be loosing my internet connection soon. So while I am in sound mind I would like to leave my first and last pic to [B]Cheryl “Angel with Attitude”[/B]. I know she will uphold the tradition. Cheryl I did not leave you with very many points but it is better than having nothing! I did not see anything where they are non transferable! Have fun guys! I will be at our local track on Friday night and while in the pits I will be thinking about you posting your thoughts about the races and hoping your drivers are not taken out by the BIG ONE! It has started out to be an interesting first week! Good Luck Everyone!
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I was told several times by my health care staff that donation of blood was out of the question. I would never be able to donate blood. They told me to donate my time as a volunteer. There is a shortage of those people too! So when I get feeling better that is one of the things I make sure I am going to do within my community.
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Since GBS I live in a fog and find that concentration is not as good as before GBS. I think some of that could be fatigue and some might be from no stimulation from shopping or visiting friends. I started to really get myself on a routine and that helped a little bit. That way I don’t forget to do things that are important I keep a Journal. I found that I would notice the plant was wilting or the dogs water bowl was empty but I would not two and two together to water the plant or fill the bowl. Good thing I have big dogs that will slam their foot and spin the water bowl when it is empty! That is my alarm that they noticed it was empty and I need to get moving NOW! I did tell my hubby about this right away and he is still keeping tabs on the plants, birds and water bowls. I will take that responsibility back when I am able to to do it consistantly. Right now I don’t feel I am consistant. There for awhile I had to write down each days appointments and make a grocery list. That is getting better now and I can remember the day and double check the time of the appointment. It no longer takes me several trips for a few items. I am better at planning menus too! Cooking is coming back to be a pleasure again. Hormones seem to be settling down to a regular level again too. More body functions are back to normal and very few numb places around my body. As long as I am still seeing small improvements I am still smiling! Hope things keep getting better for everyone! Can not loose anything to bring this up with your Doctor and even the Pharmacist to make sure it is not the meds you are taking.
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Good thread with lots of good advice! I am going to a compression center for the swelling or lymphodema in my ankles and that is really helping me! I have a machine here that does a massage to push the water out of my lower leg and then compression wraps to keep it from swelling. They were a pain in the butt but it is really helping. I have done that since the first week of December working on one leg and then the other. I now get my second garment for my right leg and then I will gain alot of freedom. During the Winter has been a good time to do this it has kept my feet warmer.
Most of my rooms have very very bright floresent lights to help with the Winter funk. I use them for working on the computer, reading and watching TV and cooking. Here we have 72 per cent of our days are over cast and the Sun is rare. With the days also being short of sunlight I have learned that using the lights really helps.
I hope that everyones pain lessens in the coming year. I am not on my meds for the discomfort that I have. The burning and itching, feeling cold or hot consistantly is changing. Some days it is only in the tips of the fingers and toes and somedays it seems to be above the wrists and ankles. That change just gives me enough to get by. I know that many of you can understand the pain that each other are suffering with.
It took me a few months to start dreaming and then it was dreams that I did not have GBS. Then that started and the nightmares started. Now it is starting to go back to normal dreams and in them I have GBS but it is not a big part of the dreams. It only comes up once in a while.
I agree that sleep and REST is what is needed. People might not understand what fatigue is. My Mom says I sleep too much. I try and get 10-12 hours of sleep a day so that I don’t feel like I need to go to bed after each little chore I do. I don’t take as many naps during the day and can actually watch a movie all the way thru now! You learn to do what you have to do for your body’s needs. We are all so different but so similar in our experiences.
Hang in there everyone! 🙂
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Sounds like more than just a Charlie Horse or cramps but it might be an idea to have a blood test to see if he is getting the minerals and vitamins he needs. When you are depleted in a few like Potassium you might have severe cramps. Growing pains might be easy to follow up on with a growth spurt on the growth chart! I hope you find the bottom of his problem. Pain is not a fun thing no matter the reason. Stress can also create pain in some cases. Over doing it also. Just have him REST and start ruling out causes. Banannas, Potatoes and the dark green leafy veggies are good sourses of Potassium. Plus it is added to some drinks and cereals. Just a thought!
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Smiley thanks for the site! I really learned alot!
Regina We all wish you well but hope you will continue to update us on your condition. After reading that article I have alot of questions. So much of the symtoms are similar to many other illness. I am glad you were able to get a dx and I can see why it took them longer to rule out all the other illnesses.
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I am glad you find the classes. Let us know how it goes. Did you tell that other GBS person about our forum? It is nice to hear from everyone. It is also nice to bounce ideas off of each other how it effects you and have support to know you are not the only one is class that gets cold because the class is a slower pace. You can take care of that sometimes by wearning a white t shirt while in the pool. One guy in our water classes actually wore a wet suit to stay warm enough. Enjoy the classes! Rest when you need to those days!
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[B]Grandma’s Pie[/B]
Grannie made such beautiful pies! One day, I asked her, “How do you get such beautiful pies with the crimps around the edge so even?”
“It’s a family secret” she said. “So promise not to tell.”
I roll out the dough, then cut a bottom layer and carefully put it in the pie plate. Then I slowly pour the filling, making sure it’s not too full. Next I cut a top layer and put it over the filling.
Finally, I take out my teeth and just run them around the edge of the pie crust and they make the nicest ever impressions you ever did see. 😮
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Oh I love to read good news! It is nice to see a celebration. Wish our caregivers got more nice breaks away from all the side effects and set back we experience! I can see what we experience they experience too! Way to go Kev and Mom too! Boy it is Cold here too and Windy!
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I am glad you took the time to post to this forum. Your story might help others to not put off questions about their bodies. Checking yourself into the ER was a giant step that gets the medical attention you need. I hate waiting for a specialist. Your experience with GBS was more like my friend Son and my friend Father….they got it from the waist down and come back quickly. Rehab helped them get back into exercising regularly. It definately is a wake up call. I hope your sucess continues and that your story helps others to listen to their bodies. We all are very lucky that we have spouses that push us into going to the doctors. Our caregivers are very important to this group! Welcome and please keep posting about your recovery.
While in the hospital I heard of a Bride that was at her rehearsal dinner and colapsed with GBS. She had it from the waist down. A Neuro in the ER worked quickly with her as her body started to fail. Her groom made arrangements for her to be married in the ER that night because they did not know how the outcome would be. They video taped the quick ceramony and showed it too all the people that come from all around the country for her wedding the next day. Two weeks later she put on her wedding gown and got married in a church. She slowly walked down the isle but she got to wear her gown!
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Smiley I am glad you mentioned they don’t do the chores the way I did! A friend of ours always told us how to deal with that in this way. [B]A hundred years from now who is going to know?[/B] So now as a reminder of his motto, I just look at my hubby and quote the neighbor. He says it is better than being down on myself all the time and it does not put a guilt trip on either one of us for not getting it done today! I used to always say I am here to keep the health department away. Well lets just say I hope they don’t look under the heavy stuff. Stove, refrig, beds and that darn couch. My other friend told me to use low watt light bulbs. I like that method too! I never asked for help cleaning my house….never did and never hope to have to. But I always have that option to call in some of the offers! Before GBS I was visiting [url]www.flylady.net[/url] to helpl get organized and to see how others felt about housework. It might be a help to others that are not able to do as much as they want. There is a calendar there I try to follow as a suggestion to what gets done this week and where I can concentrate next week. It keeps me sane but on a schedule that gets it done once a month. I am not totally organized but I figure they are working in a good body. Mine is in need of repair. I am like an old car. I will get you there but not in record time. I love the food channel it has given me more ideas to make meals since I have this extra time to plan. Hubby is reaping the benefits. I agree that it takes me longer than it does Rachael Ray! I just have learned to laugh at myself…..crying uses up too many Kleenex! Sounds like you have learned to live life with a smile too!
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The problem I have with my balance is a combination of things. Sight or periphal vision had to improve greatly. Muscle strenght had to improve which takes time to get everything back the way it was to give us better balance. Abs have to be strong to support the back and core has to be well developed to support the upper body and lower body movements. Ears can be effected and any change in hearing can cause balance problems. Water not draining out of the inner ear can also throw it off. I am guessing but you are not too far out of GBS and still using the AFO I would say that with more exercise and building confidence you will bring your body up to par to do more and more. If you exercise or do yoga you need to take off the braces and any support hose and wear clothes that fit loosely. Any twist of the clothes can be enough to keep our weakened bodies from moving. No use making the muscles try to move clothing and our bodies. Don’t use weights to add any kind of resistance either. Make it possible for your body to get back to working properly and be patient and give it any advantage you can before adding any restrictions. Do what you can at your level and listen to your body. Have you also tried using a stability ball or balance ball you sit on and exercise on it really helps with balance and doing exercise in the water while the water adds some resistance it also makes your body always reposition its self to keep your balance. Waves are a good thing in the exercise or rehab pools just keep your mouth closed! Walking is one of the best exercises and if you are able do a slow dance routine to your favorite song. Side steps or lifting your leg as you hold on to the wall are good too. They will strenghten your hips, back and legs. Also talk to your doctors or your PT they can give you other ideas according to your level. I first started out doing the Hokey Pokey slowly as I sang to myself. I would laugh and that with the singing increased my breathing. I know how frustrating it is but be patient!
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Count me in again this year, I hope I don’t get too busy like that past year that was just too much for me to handle. I had to drop from this forum. But I am back to try again. I even have a new hat that shows I am a Harvick fan! Good Luck to everyone! Let the races begin!! See what this year brings for the new car design. New teams and owners and drivers that already have no patience! 😮
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Sorry Andrew I forget to check the forum or I read and don’t post! I was trying to get my life together and was a very fit obese person before I got GBS. I was able to keep up with all the classes but did not do the sweat till you drop type classes like some of those young gym rats do. I envy them. I was amazed how flexible I was and I was working on my breathing so I could swim under the water all the way across the pool. I was about 3/4 of the way to that goal. I wanted that $50 bill so I could take my friends out to lunch some day! I was amazed how quickly I lost all that muscle tone and breathing capacity. I have started all over and after 2 years and 3 months I am here to BRAG again of more changes in my breathing, stamina and strenght. The flexibility or range of motion is coming along. Balance is doing ok but I don’t have the total confidence yet due to lack of strenght. The strenght is coming back slowly. I just noticed that I can run the sweeper thru the whole house now without too many breaks. I can stand for longer periods of time. Had to test that out at a funeral home for my friends Mom. I come out of the funeral home that night with a inner smile knowing I had hit another level with my ability to stand without my back hurting. Later this week I wanted to change positions and used my abs to move me and I really lifted off the floor and moved 90 degrees up on to a pillow so I could reach something. Before I would have struggled with the abs to get me over there and into that position. I was howling! Even the dog come in to see what I was yelling about! I told hubby THE ABS ARE BACK! Did you see that move? He said no and I repeated it for his approval! Neither him or the dog was impressed the second time. I celebrated!! I have been working on the abs for years and finally something clicked and they got strong enough to make a difference. Like someone threw a switch. TWO BIG BRAGS in one week is not normal at this stage in the game. I can not wait to test other things out when outdoors in the Summer or while trying to clean around the house. I have one couch that seems to be glued to the floor! I put a dust cloth on the cat and send her back there to get the cob webs. Some day I will move that couch again! I have not tied the dogs to it yet but that is an idea! Keep up the good work we might be in that walk/race together soon! Never give up!
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Judi it is not genetic….he has two brothers and they are bums! LOL I got the keeper! I just don’t like the guilt I feel when I can not help. We used to work alot together on projects but now we don’t seem to have anything in common other than my GBS and its care! I have accepted this lifestyle for now and see little changed happening. Just not fast enough and I have learned to have patience. I know it is not my fault. I have good days and lazy days. I still work on things even if I am not running around the house like a drawer or box of old recipes. I do quiet things. I used to do everything in the house so I think that is why I do get so frustrated. When I was done in the house I used to go outdoors in the garden and yard. I used to tease him that all he did was put the trash to the curb once a week and mow the lawn. But I can tell you that RESTing when necessary has really helped me get thru all this. It is just SLOW! I know everyone said it was slow but I just did not know what they meant by SLOW!
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I wish that my husband would learn that everything does not have to be done each day! I don’t want pampered, but do need assistance at times. I do my best work in the afternoon and evenings. I like to get on the computer the last thing at night while I wind down. When I go for the keyboard I don’t want to sleep but I am starting to shut down mentally so that energy does not keep me awake. He comes home from work and before dinner he does my chores that sometimes I have done already. He should have noticed but does not. I get tired of telling him I did that already. Or I feel he should have noticed it was done, so am I doing that bad of a job? It was not up to his standards? It took over my jobs and also continued to do his. Now after I have told him to back off and let me do this or that he is getting better but still goes into compulsive behavior at times. I will be watching the news or on the phone. He runs the sweeper that time. I get frustrated because it is like I am not even there! I would never run the sweeper while he was sleeping, watching the tv or on the phone especially. I plan my trips to the grocery store and he runs out and gets half of what is needed. He means well and I usually let things go and work around his actions. I will let him do the dishes but he will never wipe down the cabinets or counter tops. I have asked him to work with me around the house doing things I can not do. I only asked for just 15 minutes a day. He said he would, but that has not happened yet. His garage is a mess and so is the basement after we had to move everything to the center so they could put in drains around the footer. He still has not put that stuff back where it belongs. I am not sure how to get him to stop doing my chores. I wish he would give me back my life and make me feel wanted. Doing all this stuff for me is not helping. It is frustrating and actually depressing. Things never had to be perfect around here before I got GBS and they never were. I could always find something to do and had a list for the next day in mind. He reminds me of the pink rabbit with the right kind of batteries. I just fear that he will have another stroke or wear himself down that he will start to have health issues. I think it is all about keeping the communications open. I am thinking about making a schedule that shows that I do laundry on Friday that I don’t want it done on Wednesday or Thursday. That way he can see I have not forgotten about it. I had the towels on my list to do tomorrow and there is no reason to stay up till 1:30 A.M. doing a load of towels. I know this has to be how he is dealing with stress too. Do I let him do that and cause more stress for me? I guess it is time to have another discussion and tell him what jobs I want to take back as my chores. I might add a Honey Do list to the refrigerator of the things I am not able to do yet too! If I find something that works I will let you all know. Yes, I think being ill this long is frustrating and depressing. I think guilt is a big part from the very beginning besides having to give up alot of privacy. I miss that. Don’t be too hard on yourselves!
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Jan you will learn to listen to your body, when you get tired you have to REST. Your eyes might feel like they want to close or your eye lids will droop. Your legs or arms might feel heavy as you get tired. I always told friends fatigue is worse than being tired, worse than being exhausted. fatigue is not being able to do it at all. When you start back to work you might have to cut back on the amount of exercise you do or the type of exercise. Water exercise might not be as hard on your body and will relax you also. Yoga might help with movement, balance, strenght and range of motion. Also chaning exercise routines will keep it fresh and keep working different areas. Count the different motions in your job and see where you are weaker and work on those body areas. With exercise you will accomplish more with less. Give yourself credit for those extra steps you take walking from the house to the bus stop or from the car to your desk. You will find a good balance that will not wear you out so you can not enjoy your evenings or weekends. You might have to back down on hours you work a day too. I hope you find a good balance in your routine. Don’t be afraid to tell your Doctors that you need help with rehab to do your job correctly. Also keep the communications open with your work place. Adjustments will have to be made somewhere at first. Stay possitive and remember be patient with your body.
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Bryttny I agree with most of the posts but she has to decide if it is the right time to get a dog…large or small. Puppies are like having a new baby in the house. I am not sure if the healthiest person wants that kind of responsibility when they are fatigued. I suggest that you call her often to just check on her as often as you can. Even have a friend of yours call and check on her. There are churches that have prayer groups, phone buddies and meals delivered. Ask your Mom what she thinks she would like? No matter what changes are made their is an adjustment time. I would wait on the puppy. If she is interested, an older dog might be a good choice too. Just take time to think this out because if she is not able to take care of the animal on a bad day, care has to be supplied for it and that will cost money, besides the vet care that comes with the yearly check up and shots required, not to mention the food bills. I can see you are really concerned and are thinking this thru. Your Mom will be in our thoughts. Hopefully you can get her to post to the message boards, with or without help, some day soon!
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Sandra You and your friend and her family are in our prayers. Did she receive IVIG or Plasma Phresis treatments to stop the attack on her body? I hope that the Doctors do have answers, but don’t feel that you are a bother to any of us to contact the foundation for a liason in your area to speak with. Keep posting to get your questions answered here too. We will keep watching for your updates. Stay possitive you are doing a great job of giving her and her family support.
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Shari You need to support your Dad also and don’t let him have to handle all this daily. He also needs a break. Stress can do damage on any age. I am sure he is scared, frustrated and he is being her advocate. You need to notify the facilities that they are the ones that are getting paid for her care and that your Dad is not to be doing things to take care of her. He is there to keep her company and comfortable. I don’t understand why they would assume that someone that is paralized can not move. Babies move all over their cribs and can not crawl. The fact that she is able to move that much is amazing. That takes concentration, strenght and energy. When I was paralized I was able to move too. I used my head/neck to lift my shoulders so slightly as the weight of my head would move me to a new position. Ofcourse I got myself in some pretty uncomfortable positions especially if I used the sheets to slide on. I also would hold myself in a position until I got tired and then gave up and would slide down in the bed. Gravity was my best friend and also my worst enemy. I had someone put a stuffed animal beside my head so it would not flop to the side and I insisted that they put up the side rails of the bed. If I was placed too close to the side of the bed my leg would fall overboard and off I would slide. Your Mom has been thru alot and she is fighting hard. Be possitive and pray that the GBS does reverse and her body starts to heal. Those of us with GBS have learned to be patient….GBS is a very slow process. Give her a big hug and make sure you give your Dad equal time too! All of the ones here love our caregivers and we don’t give them enough credit or status. Without them non of us would have recovered as well as we did.
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Adina We can see how much you loved your Mom and we will watch for your announcement that we have another graduate. What a great tribute to your Mom’s memory. I know when you graduate we could pick you out of the line of grads. You will be wearing the biggest smile knowing your Mom gave you that extra push. Your family will be in our prayers. I hope that all of us meet a Nurse with your deciation to their family. Thank you for posting. I know you made your Mom proud already! This will be icing on the cake!
Hello Everyone!
When you get a dx it takes so much weight off your shoulders! I am glad she found someone she can communicate with and ask questions.
I have a suggestion that might help. Keep using just one thread and all your information will be together so everyone will know her background which can help us with our responses.
As you can see I have GBS and the Miller Fisher varient. There is alot of different terms they use to discribe our illness. Sorry I can not be of help but others will add their knowledge.
Be patient and very supportive that will help your Mom recover. Make sure she rests often. We depend and don’t give our caregivers enough credit in life. I am sure you are frustrated and scared too!
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Chris, I have GBS and the major complain with it that I have seen on this forum is the fatigue. People want to sleep to gain energy and it is very hard to do and seems you never can get enough sleep. Others will be here to add suggestions about the meds. Welcome to this forum and we all know how frustrating this can be trying to get diagnoised. Most of the time it is a process of elimination as they follow the tests that the insurance companies tell them to follow. Be patient and continue to have hope that what you have can be reversed like the GBS. It is a very long Journey and everyone of us is a little bit different from everyone else.
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Again this gang comes thru will so many nice words and ways to say Get Well and Good Luck with your surgery and recovery! You are on our prayer list!
[B]Hang In There[/B]
Hello, my friend; You’re on my mind,
Because you’re somehow ailing,
But your response to any challenge
Has always been unfailing.
So I’m confident you’ll win again;
Hang in there, and you’ll see;
You’ll be back on top in no time,
Tackling life courageously.
By Joanna Fuchs [url]www.poemsource.com[/url]
Hello Everyone!
Remember when you start anything you have to start over especially an exercise routine. Don’t give up on it. Work on facial exercises during a commercial or two. Just a few times to start, first you don’t want your face to hurt and that is really all it takes to make those muscles move. You benefit none by over doing it! Just warming up and cooling down is hard work and considered part of your exercise routine so take it easy and slow. Your stamina will come back, but you have to give it a chance! If you move that arm or leg an inch or a foot that muscle is working…that is all there is to exercise. Keep moving….don’t do jerky or popping movements that could cause injury…..slow and steady movements will help you see where your range of motion is and where your strenght is. No clean and jerk type lifts! They are not necessary in rehab type exercise. No long repetitions are necessary either. We are not out to beat a record. Remember what you did in rehab and work on the movements you were not good at doing and work to get that range of movement back and strenght….again slowly. Most important listen to your body! Is says STOP you stop right then…you can do one more the next week to get your level up to your goal. I never add a bunch of reps or sets in one day I do that gradually over a month or months. No rush! When walking my neighborhood I walked to the next property but maybe not to their driveway….maybe just to the property line. Remember you have to only walk half way….because you have turn around to walk home again!
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Hello Smiley and Welcome to our family. We are here for support when you need and to help guide you when you ask questions. Your story sounds very similar to mine but I did go on the vent and I did not have blood clots but I had a lung that collapsed and pneumonia. Each story is very similar but also very different! They gave me IVIG and at the end of that treatment they did not feel it was working so they gave me the PP. That did stop the attack. Now it has just been all recovery. You willl get frustrated and maybe depressed on how much times it takes to recover. Just be patient and also remind yourself that GBS also stands for Getting Better Slowly. As far as the rehab continue to do what they showed you. Work on your breathing and staminia. Range of Motion to keep you flexible until the tendons, ligaments and muscles all recover as the nerves start to get the signals to the correct areas. Even slow signals can make exercise an effort and when the nerves messages are leaking thru the sheath into the muscles causing that vibration or humming sensation you will get tired easier. Fatigure is the big complain from everyone here. Learn to listen to your body. Do exercises for short periods so you don’t wear yourself out. Maybe during commercials or for 5 minutes each hour will give you a good routine during the day to work all the different areas. Remember balance is accomplished by stronger muscles to you might have a funny gait to your walk or the distance might not be where yo want it. Increase it slowly that way you don’t have a relapse where the residuals will flare up and set you back. Lifting a bottle of water and increasing the amount of the water is safe. Only increase that weight slowly. You will know when your body is ready to work harder. The brain is what gets us in trouble it remembers how we were before GBS. I had the MFv too and I still see the Neuro Optomogist regulary. My periphal vision is still getting better after 26 months. I still have the fatigue but it is getting less and less now. Be patient! Ask people around you to be patient. It is easy for them to see you looking normal and realize that you can not shop as long as you used to or work as hard as you used to. Keep the communications open they will fill in where you need help. Yoga is a good exercise for the person with GBS because it is slow and you hold the positions for as long as you want. Aerobics are down the road. Walking and keeping active is hard but it does increase the longer you recover. Big hug to you Smiley. You have the right attitude to beat this. Remember the nerves to the hands and the feet are the longest and therefore the last to heal. Keep a Journal that will help you look back now and not just see a week to week improvement but the slower month to month and year to year improvements.
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I agree with the others that no one realizes how we struggle with all the daily changing things our bodies are going thru. As far as our care givers there is a booklet that is available thru the GBS/CIDP Foundation that is Free. I would have a copy of it set to her so she can read up on what others have gone thru. It is hard when we do start to recover and are able to do things for ourselves that look normal. But it only shows that you can function with numb fingers and feet you just have to watch what you are doing to do those things. You have to learn to ignore pain or the electric shock or zings and zaps that are hot enough to make you want to drop things but you know better and hold on to them …..like a cup of coffee or a bowl of soup. We all have found it very hard to even explain at times what our bodies are feeling. It is not being tired, or exhausted it is fatigue that does not go away with a power nap or a single nights sleep. We have to have patience with our caregivers too because this is going to be a very hard process what will now be expected from them to fill in around the house what we used to be able to do. Keep the communications open and don’t dwell on the big feelings but also celebrate the good days. Keep a Journal will show even slow progress over a months time or over a year. Have patience with each other.
Hello Everyone!
Welcome and I am glad you shared your story it is very very similar to my own. Now I look back and laugh at some of the things I did in rehab and how afraid I was one minute and the next I was laughing at myself. I remember the feeling of a huge cable around the front of my ankle and I remember the sheets holding me down. I remember how I would click to get their attention in the ICU. You are the only one besides myself that I have read about that did that. It was a major step to have the soft call button. To move up to the next level and actually push the button to call the nurse or aid. Finally to be able to change the channel on the tv. I had a bunch of favorite shows on several channels and the staff actually learned my routine. They would come in like clock work to change my channels so I did not miss my favorites. I don’t think they know or maybe they do how much little things like that made my day go faster, gave me a routine I could look forward to having someone visit. Also, I tired to be patient because I knew they would be in my room in 5 minutes to change the channel. It is funny the things we all can remember when we read someones elses story and yours could have been my story! Glad you found this forum. I am also glad you are at home. Keep up the exercises to keep working on ranges of motion, balance and breathing. Those strenghts tend to decrease quickly if you don’t work on them and remember listen to your body so you don’t take a few steps backwards in your recovery! Nice to meet you!
Hello Everyone!
Hello Everyone!
My toes are always cold! I wear more clothes than I ever had. Even layers in the Summer. I get the chills under a quilt. My hands are always tucked up to my chin to feel my warm breath on them or tucked in my pockets or between the side of the chair and my leg. I have notice that I sweat so bad in the ICU, but now I sweat very little and I am retaining water. The Doctor predicts that I am holding around 30 to 50 pounds of excess water. Just seems that I am never comfortable. I am taking your word for it that it will change after time! Boy are we weird or what? No wonder the Doctors are not able to figure us out! I think someone hit on something…..use your sense of humor to get thru all this! You have to be able to laugh at yourself and teach others to do that same. It is not that we are always whinning we are just so amazed with what all is consistantly changing with our bodies.
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I still have some double vision when I look up without tilting my head to look up and some when I look down without tilting my head. That makes it bad for going down steps. My periphial vision was very poor but getting better with time. I was not a good canidate for the eye patch and I refused it when they suggested it. My vision would completely go blank from what I learned later was hemoraging in the eye. I do remember the pressure in the eye ball itsself was extremely painful when I would wash my face. I also lost tear production, but that has come back almost completely now. I agree most of this is just time and patience while it heals. But just to make sure I was told by one of my nurses that I could ask the Doctor to invite an eye doctor to come in and to only been seen by a neuro-optomologist so that is what I did and I seen him twice while I was in the hospital and I continue to see him even now but not as frequently. From all is I have learned to be patient but not take chances. Better to be safe than sorry and be examined. Double vision was one of the scareiest things I had to deal with not knowing if my vision would get better or I would go blind. The neuro-optomologist was the one that assured that it would get better slowly. Now the vision I have today is better than what I had before GBS/MFv. I do notice the eyes are first to show fatigue in my case too!
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Brie welcome to our forum. Are you seeing a neuro optomologist? I had double vision as one of my first residuals and it took time for that to really heal …it was about 10 weeks or more. I still am going to my neuro optomologist and they never mentioned the prism glasses. So I can not help you with that part, but as GBS reversed and I worked with therapy doing exercises to make the muscles around the eyes work more effecient that helped. I still have some of the field of vision that is not clear and other problems you have not mentioned. Do they think you had the Miller Fisher Varient along with the GBS? My eyes were frozen wide open during the whole process in the hospital. I know there will be others that post to your message too.
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Sabrina I am very glad you let us know about his wonderful progress. Everyone can take a deep breath. Now you will need lots of patients. I agree with angel2ndclass22699 on the type of rehab he should be receiving. His progress will totally remind you of what a baby or toddler will learn. OT and PT will work with different areas of his rehab and keep focus on what he gains that day. This will be a very slow process. The term “more aggressive therapy” to you might mean this will speed up his recovery but that is not what they mean. They will work him in the morning and in the afternoon but only should be doing things that are baby steps to us. This is the time they can not wear out his body. He will need more rest during this period also. His daily schedule might consist of him trying to gain movement and strenght to feed himself, get bathed and dressed…..that might be all they do for his morning routine and then he has to SLEEP until lunch. Then he will eat and REST until hopefully his next PT is not until late afternoon, so he can get more SLEEP! Let him brag about each little finger or leg or arm he is able to move it might only be an inch but that is all you need at first. All of this slow process is building up to the big picture. BE Possitive!! Remember how long it takes a baby to learn this….his head remembers how it is just his body that is not cooperating. You will see more mood swings and frustration because he has moved up to the next level of his journey but he is not getting home quickly enough according to what he brain thinks it can do and what he is starting to realize how much he can not do. Remind him if he can not do something they ask of him today, there is tomorrow and the next day! Now his mind is starting to set goals that his body might not be able to live up to just right now! As for things you can watch for that were big markers for me was pulling myself up so they could put a pillow under my shoulders. Rolling over on my side so they can change the sheets with out them rolling me over or he starts to reach for the phone. These are all bigs deals to the patients. Then they will start to sit him up on the edge of the bed and work on getting him to wash himself and maybe stand after he can show his balance is well enough to do that. They should be going slow but will be building that sound foundation for all those other things he will be in a hurry to do. He can not be force like what you would think more aggressive therapy could mean. They are just really increasing the time they work with him. Each day make a big deal of his brags! We can not tell you how much that tiny daily progress will help with his recovery! As suggested make sure you and rehab know what “more aggressive therapy” means and what you are to expect. DO NOT let them over do it with the GBS person it will set them back very quickly. It will kick up the residuals and he will relapse. Make sure they also let him listen to his body. If he is tired they will not make him do something new and harder they should work backwards on what he does well and build strenght from that. Didn’t we tell you he would Get Better Slowly? Big hug to you and your Dad and your family. You are doing a great job!
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Hello Everyone!
Sorry you have to go thru all this again and again. I know how frustrating it has to be when you don’t feel good it is even worse.
When that test was done or any test or meeting was held they sent a copy of the report to several of my Doctors. One was my family doctor and then the others that needed to know the results. It could have been forwarded to one of your other doctors? Just a thought!
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Sherry,
I think when you consider the dog has already been spayed/neutered and all shots are up to date and teeth have been checked, cleaned and any pulled if needed. They have been wormed. Then the places have evaluated the animal to make sure it will be good for your situation and is even placeable. I think the total of those services can add up very quickly. If you would have got a dog for free you would have to address those concerns for the dog after adoption. So without a discount or clinic $200 is alot of money but you are putting it back into the system for the next dog inline to be adopted. Many of the dogs I have taken to the vets need wormed several times and teeth pulled. Also spayed and neutered before they could be adopted. I evaluated them for over a month. Their care cost me more than $200. I am sure you were quoted show dog price with that $5,000 price tag. Neither you or I need show dogs, so make it clear you are looking for pet quality. Even approach a reputable breeder for a dog they kept longer to see if it would produce pups or do well at showing but that was not the case! Don’t give up your search but if you want something that is not going to shed and will stay small you don’t have alot of breeds that will fit that bill. Remember FREE comes along but you just have to be patient! Remember that is how I got my three Yorkies! Also, contact all the groomers in your area they hear about dogs that need placed all the time.
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Andrew I joined a spa/fitness center so I have all that equipment available to me and since I still have alot of fatigue I don’t worry about burning calories or the time I do an exercise yet. My stamina is very poor due to heart problems (arterial fibulation) that occured after my lung collasped. I do know that others enjoy that piece of equipment. I do better if I am not pushed by a machine or don’t have any resistance from a machine. Walking and my version of dancing for now is where I am at. My exercise program has really increased since my breathing has increased with Yoga and breathing exercises. Swimming and having to hold my breath actually did wonders for that. But there is always room for improvement! I do the exercises that I enjoy. I don’t ride the bike either, I use the machine you pedal with your arms and the bike with the seat where you sit and your legs are out in front. I am still working on walking distances that are more consistant. My chart depends on the time of day, humidity, temp and what I am wearing. Winter coat drags me down alot! Dog pulling can not even speed me up! Going up hill is impossible and walking on the flat is the best and walking downhill is fun too! I call it cheating, especially with the wind at my back! I have to watch walking in the wind because I can not turn around and come back home if I have to walk into the wind. I am pretty good at Leslie Sansone tapes where you walk in place for the number of miles you want. I just don’t finish when she does! But I do the distance!
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It was not until my second Summer that I thought the strenght in my arms was finally helping me do what I wanted. It took a long time before I could control the gallon of milk. I think they weigh 7 pounds. My fingers are still weak. It was also that same year that I felt I could get myself up off the couch without getting stuck. My left side is still alot weaker than my right and it used to be my stronger arm and hand. Use water bottle to do arm shoulder and wrist exercises. You can gradually add water to them for weight as your strenght comes up. I used the hand weights and they were easier to hold on and balance because there was not water moving inside. Just that movement trying to twist my wrist was hard at frist to control but it got easier. Two years after my onset, according to my Journal, I was able to lift and cary my laundry basket. Don’t give up, just don’t get hurt either!
Hello Everyone!
Hello Everyone!
expedite the return of our damaged nervous system? Your body has to do that and under that heading falls REST! The sheath of the nerves heals very slowly and after that the damaged nerves take even longer to redirect their signals over regrown nerves.
What exercise does is keeps the muscles moving and the joints regaining range of motion. We are talking not hard exercise but walking slowly, breathing exercises, range of motions and stretching exercises. This will help the tendons, ligaments and muscles stretch. Some lower level strenght will come back slowly. Work on each tiny muscle and up to the larger muscle groups. Be sure to work the upper body, lower body and the core. Make sure you warm up and cool down too. High impact is not what you want to start out doing. Make sure all areas are working and discover where you are weaker and work on those areas too.
OT or Occupational Therapy will make sure you are able to do everything required for daily living like opening jars and cooking. Laundry and folding clothes to dressing yourself, combing your hair or getting into the tub or your car. Also, anything you need on your job or hobby. PT or Physical Therapy will make sure you are able to walk, lift and and climb the steps. Open doors and turn the key and shift gears or get on a bus. They try to get you back to “normal” so you can return to work. Stand for a long time like in a line or waiting at a bus stop. If you can not accomplish something they work with you. It also depends on your insurance coverage but a year later you regain all your benefits back to start working with PT again. I do exercises at home to video and tv programs and then go back and tell them what I am not able to do yet. They are still working with me to continue to see my abilities increase to get me back to “normal”. Don’t give up on yourself. I am able to do alot of things now, I still have some areas to work on. When I had cramps in my hands they gave me exercises to do to stop the cramps. When I had facial cramps and pains they gave me exercises to do for that too. I was not able to crawl and if I sat on the floor I had to roll over to the couch to stand…..with some strenghting the back and hip and letting my shoulder heal from an injury in the hospital they got me to crawl and stand up in the middle of the floor or store or parking lot. That gave me alot more confidence to go away from home. Just remember it all takes time and is hard work and a struggle at times. You just have to set your goals and keep possitive!
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Hello and Welcome. I am glad to see you are being such an advocate for your mom. We love our caregivers on this forum. It really has not been that long since the onset of your mom’s GBS and it takes time for the sheath of the nerves to heal and get the correct signals back into the muscles. I am sure you have read GBS stands for Getting Better Slowly. The muscles need to be worked with OT and PT and just a month in the hospital is not enough. She should have been receiving PT at home. If balance is a problem they should be working on getting her muscles stronger and maybe working in the swimming pool would help her with balance while the muscles are still weaker. It does not take as much energy to work out in the water as it does to work out with gravity. It is also kinder to the joints. And you do not have as much of a fear of falling like you do out of the water. How is she doing with fatigue? Is she back to her regular routine and was she trying to do more than her body could handle? REST is very important. Remind her to listen to her body. Over doing it can make you slide backwards. Take care and keep things possitive…..her attitude is a big part of her recovery!
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Andrew you can set smaller goals thru this year and join the event next year if this does not work out for this year. It is more important to get a set routine of exercises that get you back to having better stamina, balance, range of motion and increases your breathing. Being able to just walk that far in a month would be my goal now. Winter months also slow me down as far as getting out and walking. Lately I have been going to large stores and next will be the mall when the holiday crowds stop returning their gifts. I am still mixing up my daily routine to keep it interesting. Today while walking around the stores my back really was acting up. That is those abs that help support the back and the hips and the core. It is taking me longer to bring that area back then I expected. The strenght could be better over the whole body but what I have gets me thru the day’s routine. I just know how I was before GBS. It was windy today and even the dogs did not really want to go out in the snow flurries and wind. I think they are pretty smart! They would go if I went, only to be with me! I think the store was a better choice today.
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I found the further I went into my recovery the feelings and residuals changed. I did not have any pain or zings or zaps to start with. Mostly everything was numb. As I started to heal then I started to experience those things. I took it as a possitive sign I was healing and the illness was slowly reversing. As the numbness went out of my core I did fell the muscles that were weak and the areas that needed more stretching and exercise. I also felt the pain in my back more as I started to do more things for myself and did too much. I started to change my lifestyle to accomindate those things and I would make sure I did not sit too long, or stand in one place too long. Also, that I did not walk too far because when I got tired and did too much and I ignored my body I paid for it. But I slowly developed an exercise program for me and a daily routine so I got things done, but also did not do too much. If I had to add a doctors appointment I might skip doing the floors or the laundry. I become more flexible in my scheduling and what I required from my body. It has been interesting thinking about me! What I need and asking for help if it is something I am no longer able to do. It is strange because some days I can do it myself and other days I am not able to do it. Lifting still is something I find difficult to do and taking things down off the shelves. I remember putting it up there but have no idea how heavy things were. I have to be careful I don’t listen to my head that I can do it or have to get it done. I have to remember to listen to my body that says different things each day. I just have leaned to take one day at a time. Also, to make plans days in advance to give myself time to get ready. I just am not as fast as I used to be. This journey has become an adventure! I appreciate the things I can do more now! So some new residuals can be a good sign you are getting better! But don’t ignore them, mention them to your doctors…..mention them on here. Some will be related to GBS and things might throw up a red flag that it needs to be addressed. BE WELL!
Hello Everyone!
I suggest you go back and read your original thread you had started before this one. I think a lot of your answers are still here. You went back to full time work pretty quickly after being in AFO’s and power chair or scooter? That was not really what I would call a mild case! Also in your own words you say you are a “hard-core workaholic”. That plus in your own words “stubborn”. Both of those things can work agains the person with GBS. If at all possible I would talk to your employer and see if it is possible to go to a shorter day. Taking a week off might not be long enough to recover like you expect. Giving your health daily attention with a shorter day might let you heal better without the residuals kicking back up. Blurred vision might be the result of weak muscles and not damaged nerves. Even drooping eyelids can result when you are over doing it and cause blurred vision. Computers are know to be hard on vision too. I would not rule out the CIDP and the IVIG but cut back where you can cut back to see if the residuals back off too. Also as you go thru the healing process you will experience alot of changes as places get stronger you will notice more the places that are still weaker. Numbness that moves up and down from just the foot up to the knee and then back to just the toes and then up above the ankle. Keeping a Journal will actually help you know how active you are and what could be the cause of these changes. Go back and read some of the old threads and see how far you have come in some areas and how residuals have stuck with you in other areas. Listen to your body! Reprogram your mind to drop the “hard-core workaholic” lifestyle and take care of yourself. Don’t ever think you need to appologize for long post or asking questions is whinning! Remember it took a team of Doctors putting their heads together to figure out what was causing this illness. It will also take a team of us to keep you smiling!
Hello Everyone!
Hello Everyone!
Happy Belated Birthday Cheryl! Ofcourse I missed the beginning of the party but your able to celebrate the whole month if you use the chart for the color of your birthstone. If you use the astrological signs you should have started before Christmas and better squeeze the last of the celebration into the next few days. Me? I celebrate everytime I hear someone say HAPPY BIRTHDAY! I am too old to remember when it is and therefore I can celebrate all year long that I remain this same age. What else can you celebrate for a whole year? Sorry you are not able to have a birthday party out on the beach or in your pool. How many did you celebrate around the ice skating rink or a bond fire? I hope you are able to celebrate many more with your family here! 😉
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I am really gathering information for this and hope to attend. Oprah is located in Chicago and she might be taping a show on one of the days we are there if we stay longer. I think there is plenty to do in Chicago, but just trying to decide where we would like to go and what we want to see will be the main thing. It would be nice to count on locals to help us with all that like they are doing. Thanks ladies and gentlemen! I will keep watching the threads and when I get a chance I will add somethings that I find too.
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Sherry I know what you mean about loosing those old guys I lost two of mine since I got home from the hospital too! Old age not neglect! Now the house plants were another story. Hubby thought they were fake. I explained that fake does not turn brown. Be patient and keep checking around. I have yorkies and the cost to have them groomed is very high over their life time. They should only weigh 4 to 6 pounds so there is no such thing as a t cup. If you find one that is undersized they are hard to vet because the vacinations are too strong. You might want to check into a Chihuahua mix. If you would like to vent more or need help finding rescue groups in your area for the small breeds send me a private message. Some times they are less expensive than the shelters with lots of expenses. Don’t give up looking for a best buddy the right one will find you soon!
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FALSE! I am a morning person, once I wake up I am awake. I usually stay up because the dogs want my attention. I start to watch my regular shows in the morning and call my Mom. I do still take a nap in the afternoon and like to stay up late at night…I am not always able to stay up as late as I used to. I never set an alarm! But I do manage to get atleast 8 hours of sleep and average closer to 10 hours a day. When I got home from the hospital I required 20 out of 24 hours a day of sleep! I have my life back nows since that amount of fatigue has got much better! I listened to everyone here who told me to get plenty of REST! I was lucky I was able to do that!
[B]The next person loves to go to amusement parks and ride the roller coasters![/B] 😮
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Don’t appologize for posting any exercise suggestions. They can offer some ideas of what a routine is and might even give them some exercises they can try for themselves. Exercise is exercise even if it was suggested for CMT or not. Some might benefit. Other will not be able to benefit at this time but can try it later once they get better with their present routine.
I wish I could travel that event sounds like it would be a very nice thing to attend. You might even have to wait for me to finish! I am glad you are getting alot of support from your friends.
You might even want to have a tiny article show up in your local community news paper and get the children in the community to support you. Scouts and hospitals, your nurses or even a few members from local churches. It will be a nice time of year to get some fresh air! Keep up the great work!
Thanks for the link to some exercise suggestions.
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Well don’t be hard on yourself. She has forgiven you the next day and we are the ones that put ourselves on a guilt trip. Sure she will understand. The fact that you love her is what is in her heart and memory! That fact that you care! Run stuff by us and notice we tend to blame everything on the GBS and then find out later that we were reallying coming down with a cold and it was not the GBS. It is hard sometimes to be possitive all the time and we remind each other of that all the time. One thing we all need is support! One thing we all have is our opinions! Just answering each other’s questions is so helpful and we do have fun together too sharing stories. Come here to vent often…..we all do that! Just give her a hug and see if she gives you one back! Give her a complement and see if she gives you one back! Most of all give her a Smile and she will know you love her and she will smile back! Unless she is trying to think of a smart answer or deep in tought with one of her toys! Try having a special time to share a joke of the day…..laughter is the best medicine!
Hello Everyone!
Hello Everyone!
Raynaud’s Syndrome that is what my friends teen daugher had. If I don’t come up with the terms I know I can count on this group! Their memories are better than mine for the details. Yep too hot or too cold would start my body into shaking tremors it was aweful. You have to find what works for your body. I was not able to sit in the tub for very long due to pain in the butt like I did not have any padding to sit on. I could see it was plenty in the mirror so I know that was wrong! I have experienced so many weird things from the nerves not functioning correctly. Coins on the floor felt like I stepped in a puddle from the dog. Towels felt like steel wool. Some things like rice and dried foods felt like they were sharp and would cut me. I would look at what I was touching and it was not hot at all or it was not cold or wet. It was and still is very strange. I can not feel money in my fingers. I have to watch what I am counting since I can not feel them there. Pages of a book are hard to turn and feel so I watch the page numbers so I don’t skip a page. Once you deal with this longer and longer you will learn how to tell people what you are feeling. For a child I know communication has to be poor. I had a tough time explaining what was happening and how I felt. Keep working on getting better and a possitive attitude is a big help! When I got tired I walked like a penquin. We would laugh about it. When I got tired my eye lids would droop. Hubby would ask me if I wanted to go home or take a nap. I knew he was seeing how tired I really was by my eyes or my walk. Take care everyone!
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The nerves by the spine control body temp and the body’s response to fevers and chills. Signals will be messed up for years until they heal. If they gave her blood thinners that would make her chill easier too. When in the ICU I was burning up and sweating to the point of a soaked bed. I wanted the fan on me it was so bad. I had them open the window and it was 16 degrees outdoors and I was still HOT and sweating. I had them turn of the heat in my cube. Nothing worked! for 7 or the 9 weeks I was in the hospital I used that fan and kept the heat off in the room. Then double blankets were still a must! Even now after 2 years and 2 months I watch tv under a down quilt. I wear flannel and log sleeved sweat shirts. Door opens and I get chilled for hours.
My friends teen had GBS from the waist down and her fingers are cold to the touch and turn red. I can not think of the disease yet but being cold is not fun at all! Hot showers and baths are not good for the GBS person and children don’t enjoy them like an adult would anyways. But they don’t work.
It is the faulty wiring of the body giving off wrong signals. I hope it does get better. Just work around it is what I am doing. I am aways over dressed in long sleeves in the Summer! Under dressed in the Winter. Remember GBS also stands for Getting Better Slowly!
Please give her a big hug from us!
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It has been 2 years and 2 months for me. I am doing great now! I still have many of the residuals that you have but I am in no pain that I have to take meds for. I still go to too many doctors to let them see how I am doing. My eyes are still improving. I am able to walk without a cane most of the time. I do take it with me when it is going to be a long day or is windy. Also when I travel I am going to take my wheel chair. I would like to attend the event in November. That is my goal for this year! I hope that everyone continues to improve! It is a slow struggle and frustrating! But being on life support was no fun. But that reminds me how bad I really was and now I look at how much I have improved and I am grateful. I still have a long way to go with staminia and returning to work is not even a thought yet. I am not able to do most of my house work yet due to my poor strenght but that has come from zero to where I can do alot for myself now! I still have that to work on! I celebrated when I could carry my laundry basket around and lift a gallon of milk. I continue to exercise on my level and keep things moving. Balance is good and the rehab pool helped with that. The wind is taking it to a greater level with the gravity and wind it is a scarey battle. I slipped on a wet floor on a rainy day at a resturant. When I went down my leg was too weak to control the slide and it happened too fast. The other leg held and I went down to one knee with my hand on the handle of the door. Out of embarrassment I stood up faster than I have ever stood up! I laughed it off and warned people entering that the floor was wet and slippy. It took me 5 minutes to settle my neighbor down from her panic of my acrobatics! Geesh it was no big deal! My rehab doctor told me falling trying to learn to walk again is go big deal. Look how many times toddlers fall! I have fell three times since GBS. I hope this is the last! Once at the rehab facility, once at home in the bathroom on the bathroom scale that slid on the floor and now at the resturant! When I get tired I stumble once in a while and friends just laugh it off by asking How long have you been walking. I tell them I just learned to walk two years ago! I still can not run! I don’t jump but I can do some dance steps. Be patient and don’t give up on yourself! Look how far we have come. Don’t loose your sense of humor! We can handler our new lifestyles!
Hello Everyone!
How long has it been since your onset of GBS? I had noticed others with problems with their wrists and hands like you mentioned when I was coming up thru the ranks. I did not have that problem but later it showed up and lasted a few months. I was in rehab at the time and mentioned it to them. The OT that specialized in hands told me to give it time and not to get any surgery on it. It did go away and I avoided surgery. I had to retrain myself to bring my wrists up across the chest as I slept and I locked one arm in with the other one as I layed on my side. If they started to fall asleep or get uncomfortable I trained myself to wake up enough and reposition them. it is very common for a person with GBS to pull their hands up toward their chin and let the hand flop forward because all muscles are weak. This has been referred to several times to chipmunk or squirrel paws. Some have given it time and opted to have surgery. Many have got better with time. I wish you well and Happy New Year to you also! Be patient others will respond also. I don’t make any comments on medications since I never needed them the pains I had I could tollerate or were not consistantly there.
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Welcome! We all have had problems trying to even explain how we feel just to each other. For the ones that have not been educated on GBS/CIDP with all the variants it is very had to express how we are feeling today because yesterday it was very different. You have good days and bad days. Describing the condition and the limitations you could face will be with at first and then because they see you on a good day once they stop asking what they can help with because you must be cured! It is best to listen to your body and explain to your family they need to learn others jobs so they can pitch in and pick up the slack. Also, step back and take a deep breath and ASK them to help take some of the duties from our routine. Let them carry the laundry basket. Maybe all you can do is load the washer and dryer and then your energy is spent. They may be asked to fold the clothes and put them away. Also let them fold them backwards or ugly it does not matter. It hurts to see things done the “wrong” way but reach out for that extra help. You will start to see what was important to you before will all change and having good friends and your famly around is what is important and not that the window seal is dusty! If they can not see out the window, sooner or later they are going to pick up a rag and wipe it clean. Keep a Journal so you can see how great it was on those good days and how much you do get accomplished as a family with your circle of support! You will find we admire our caregivers here very much. They have kept our lives comfortable for us, so we can take care of ourselves. This is your new job for now! REST and take care of yourself! It is not greed and with this illness there will be no speed. Keep the lines of communication open with everyone, family, friends, doctors and us! We are all here for you! Keep checking back many will add to your thread and give better ideas. Stay possitive is my advice to you for the New Year. Happy 2008 by taking one day at a time. Enjoy!
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OK side effects of meds and over eating has been covered!
How about retaining fluids due to poor muscle strenght to move the fluids thru the Lymphatic System?
The heart gets weak and it effects the circulations…..the leg muscles get weak and it effects the circulation of fluids in the Lymphatic System. Therefore, we retain water in our feet and around our hearts, fingers….any place it can not be moved by the muscles moving. Lymphodema is a common problem after any injury to muscle or weakness like we have to our muscles after GBS or CIDP.
Abdominal distention may also occasionally result from the accumulation of fluid in the abdomen, which can be a sign of serious medical problems. Here is where the Doctor might be able to find the cause.
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Sorry with the holidays and other things taking up my time I have been ignoring the computer. I am interested in hearing about what others are doing. I might not be able to work in the heat but I might take advantage of some of the yoga positions to further work areas of my body that are weaker. I know my program lacks cardio and that will come as my staminia returns. I don’t work my exercise program with anything that needs me to jump and twist and repeat movements over and over. I find that if I work a routine of many exercises and movements like a dancer would learn a routine and repeat the movements that way I don’t get sore. I do get tired and then I take a nap for as long as I need for that days routine. I also split up my routine throughout my day. I don’t spend an hour exercising. I do about 5 minutes each hour or work along with a tape or tv program for about 30 minutes several times a day. I learned a long time ago that if you get sore you might not be warming up and stretching before you exercise and you are not taking time to cool down with some exercises. Before GBS I would reward myself with a 15 minute dip in the hot tub but after GBS I am not able to tollerate the tempatures in the hot tub, steam room or sauna. I can not even take a warmer shower. Although that is now changing and I am able to tollerate warmer water in the shower. I also use the the rehab pool which is 94 degrees. If I don’t move around in the aerobic classes pool which is 84 degrees I get very chilled. I also noticed I get bored with classes since I don’t have a strong attention span anymore. GBS Brain Fog! I have found also the instructor has alot to do with my attitude too. They keep it interesting and I keep going. I need that quick changes in class to keep me interested, just like they do for the kids classes. I just make sure what ever I do works all the different areas of the body. Upper body, Lower body and the Core. Warm up and Cool down is never skipped! I keep a Journal and a tape in the VCR all the time. I get my tapes from the thrift stores and garage sales and flea markets. I also have some different size weights I use, the balance or stability ball you sit on and aerobic steps. I have tapes to follow with all of these toys! I have the yoga mat and block. I do the easy level rather than the advanced routines. I think it is more important to just keep moving than how rapid you move and get thru your routine. That is why I like all the marticial arts based programs, because they are slow and that gives you time to watch your form and do the exercise the right way and hold that position and feel the exercise doing its work. Also you can feel the stress move right out of your life. Exercise makes me eat better foods too. I give myself credit for walking around a large store or doing the steps more on laundry day and back off of some of the exercising. To me exercise is beyond what you do daily but you also have to make sure you don’t get over tired so I do count those things as part of my daily routine and exercise program. Because I don’t walk around the large stores every day and I don’t climb the steps all day long I take that movement into consideration. If I do get sore from doing a certain movement I don’t drop it I back down to only doing it several times rather than 8 times. I let my muscles in that area and the tendons and ligaments catch up to my brain. I also try to do my harder exercises in the morning and the easier areas in the afternoon and evening when I am not as energetic. With bad weather coming now I will do more walking in place with my Leslie Sansone tapes. I might walk a slower pace or divide that mile up over the day but it gets done. I write that all down in my Journal. I used to wear a pedometer before GBS and get over 10,000 steps in a day. Now I just do what I can and try to finish that mile on the tape within the day. Most of the time I use that walking in place as one of my warm up or cool down exercises. The nice thing about exercise you can customize your program to what you enjoy doing and also to what you find works for you. It is not a competetion! I admire those that do more than me! They are my inspiration. Keep up the good work guys! It is ok to be a little sore you just don’t want to feel pain. That is the sign to stop before you get injured. You might not be at that level yet and have to work toward it as your goal or you are doing it wrong and that is when it is nice to have an instructor or personal trainer. That is why I liked rehab they reminded me of how to do things correctly. I am going to check out that other site now. NOW IS THE TIME TO START your routine and get moving. Even if you are in a wheel chair or in a bed you can do some kind of exercises even if they are just facial or wiggle those toes to keep the fluid moving thru your lymph system. It is not like the heart and has a pump it is the movement of your muscles that keep your legs from swelling.
Hello Everyone!
Hello Everyone!
Josh ivig is not a cure but it is given usually in 5 treatments and it stops the immune system from attacking the sheath on the nerves any more and causing more damage. Then the healing process can begin by reversing itsself in reverse. The first signs you had will be the last residuals to go away after rehab.
The two approaches have often been found helpful. High dose intravenous immune globulins (IVIG), protective blood proteins obtained from healthy volunteers, can be readily given through an arm vein. (Which the Doctors thought did not work for me) So I also had another treatment, called plasma exchange (PE), or plasmapheresis, some of the patient’s blood is removed and the blood cells returned without the liquid plasma portion of the patient’s blood. It may work by removing harmful antibodies contained in the plasma.
Have you been seen by a Neurologist? Are you experiencing Fatigue? REST is going to be your best friend once you are admitted to the hospital.
Good Luck to you on getting a quick dx. Here you will hear that GBS also stands for [B]G[/B] etting [B]B[/B] etter [B]S[/B] lowly. The Foundation also has very good Free Information that you can call and have sent to you and/or your doctors.
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[COLOR=”Red”]This throws up a red flag for me! [/COLOR] I even worry about those that travel into Mexico to get prescription drugs cheaper. Or even the ones that travel to Canada to get them. Now that our USA dollar has droppped in value that might not be happening as much in Canada now.
I worry about the quality of the prescription drugs that are being shipped to us. Just because a website looks like it is in English and gives a local address that is not enough for me! I use caution when it comes to these sites. I have read over the years from the main news stations that the pills might not even contain the medicine you need in them. Bogus and Conterfit come to mind right now.
There are state by state phone numbers set up for people that can not get the medications they deserve but don’t have the cash flow to obtain them. I would first contact your local hospital, federal agencies and exhaust all those sources before I take a drug from the internet! [B]Just My Humble Opinion![/B] I would rather be safe than sorry!
FOR EXAMPLE: Here is one quote from just one of those sites! Does this sound safe to you? “And to make things easier, you will not need a prior prescription because their doctors will write a prescription for you (you must qualify). ”
[COLOR=”Red”]RED FLAG[/COLOR] to me was what sane doctor is going to just write out a prescription to someone they never met?
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Hello lhs and welcome! I don’t have CIDP, I have GBS. You should be very honest with your Son. If he has been a trooper already it sounds like you can keep the conversation possitive and let him help when he can. Keep things possitive as far as your attitude and it will help you, but also help others. Tell people what they can do to help you. It can be just visit you once a month to do things that you are not able to do or help you catch up. Also have a list of things you could use someone to help you with weekly or biweekly. Sounds like you are able to handle the daily things pretty well, except for the [B]REST[/B]! Does your Son go to school? That is when you should take those extra hours to [B]REST[/B]! That is going to be your best [B]REST[/B]. Your job is at home so you might be able to work shorter hours a day and work 6 or 7 days a week as not to tire you out so much? Maybe on the weekend you could find a neighborhood child’s Mom or your relative that could take your Son to play while you fit in those few hours of work. Be inventive and resourceful. As far as the house work, do things as a team with your Son. The sooner you both get the dishes done then there will be time to play a game or watch some tv together. Have him read to you or teach you how to play a new game or sing a song. Do some crafts from a book or build a lego city that might take you weeks. A little bit at a time. The fatigue is the most difficult thing for me to deal with and I have come to terms with it and ask for help still 2 years after my onset. Even if it is for a neighbor to go shopping with me and then we can stop for lunch. I tried to keep things as normal as I could. I had one neighbor that I asked to call and check on me. She still does that each Monday or Tuesday and we see if we can go out together. One day we both wanted to buy wallpaper and we just went and picked out a few books to bring home. Also be active and stretch and breathing exercises can be helplful daily. Yoga or some type of Aqua therapy in a heated pool may relax you several times a week and help you with your strenght and balance. Are you doing any type of therapy? OT=Occupational or PT=Physical Therapy? Some one else will come along and answer your other questions. Nice friendly group you have found. Welcome!
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If I could give each of you something for Christmas it would be a huge platters of Christmas Cookies and baked goods from my kitchen to yours. Then you would have something to share with family and friends when they stop in. In the middle of that platter would be a tiny box all gift wrapped carefully for just you! In it would be a special ornament for your tree or to hang in your window. I love the memories that each decorations means to us. Some that say [COLOR=”Blue”]JOY[/COLOR], [COLOR=”SeaGreen”]PEACE[/COLOR] and [COLOR=”Red”]LOVE[/COLOR], which is my Holiday wish to you!
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Hello and Welcome Brie! Congratulations on the arrivial of your daughter! You sure have had alot of changes to your young life lately. I am glad you are healing and able to do what you are. Listen to your body and stay on your routine when you can. [B]Rest[/B] when you are able. The [B]Rest[/B] is what is going to help your body to heal. It does take time for the sheath of the nerves to grow back.
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I have GBS but have never tool any medication for the shooting leg and hand pain. I got zings and zaps and muscle spasms and cramping. When I start the cramps I just make sure I eat more things that have Potasium in them and they would go away for days. I never took medications because all these kinds of pain are never there when the Doctor is there. I would try and explain them but did a poor job. I just told the Doctor if they get to be steady I would tell him.
I do remember growing up having what they called growing pains where the muscles would just cramp too. They said it was growing pains that wispered that they were from the hormones changing. I don’t know if she is that age?
I did see something in your message that did throw up a red flag. “Emily was sitting down, on the carpet at school, when her leg pain started. She said that she had hurt her finger right before that & she needed a band-aid.” Maybe she was in a position that made her leg fall asleep and when it started to come out of it that is when she felt the pain? Also cramps can start in muscles when you sit in a strange position. Also, kids have a habit of leaning back on their hands and putting a weird angle on their wrists. I also agree with the panic part “IT HURTS” and in school you can not just scream and rub your leg and call attention to yourself. I hope it never happens to her again. It is hard because kids want their Mom’s but are also embarrassed when they show up. Crying as soon as she heard your voice might of been just a stress release too! Glad you could drive over to her rescue! Next time pay attention to the speed limit. OH your lecture is over! Have a good holiday!
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angie I hope you have as nice of a doctor as I did. I have not noticed any posts either but I also don’t know all the variants of GBS. It really does help to talk about this and coming here will help also. There is always new research going on around the world that might bring you in contact with someone else that has the same questions as you have. We have a tendancy after GBS to blame every itch, twitch and pain on the GBS. It is hard to separate things some times. It is better to question the professionals and keep them on their toes too!
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Kabrde13 What a great neighbor you are to research this illness to better understand. GBS also means Getting Better Slowly, so it is going to take some time for things to return to a better situation. Right now the parents are trying to just digest all that has happened. They are on high alert and have fears, worries beyond our imaginations. They are dealing with this day to day. I am sure they have many questions. As a caregiver they will have to be dealing with the big change in their routines, being organized so they can spend more time with the child and his needs. Having all this dealt to them quickly. Give them support. Volunteer your services and call on them as often as you did before. Things for them is not normal and right now they need to take their minds off of the illness and worry and have some normal routine in their lives. When it is a child there is one parent that will be the caregiver more than the other spouse. Let them know you are there for them if they need a break to get their hair cut or shopping done or even packages wrapped. If you are making a trip to the post office ask them if they need stamps or something mailed. If you are going to the pharmacy ask if they need anything from there. For the most part they will say no but as this illness goes on they will realize they need extra help. It might mean baby sitting while they go to a doctors appointment or taking a book back to the library. The child is going to suffer from fatigue and need to sleep alot….the parent is going to also need their rest. Mentally they are going to be exhausted. For now just step back and watch for times they need help. Each day is different. There will be lots of visits to doctors and rehab if needed….even offering to drive them to these visits might just be a nice change in the caregivers routine and give you the chance to help out. What they don’t need is for all their friends to move away from them. They need their Circle of Support to be there just not at the beginning but years from now too. After two years my neighbor calles me at the beginning of the week and finds out what my plans are and if we can combine a day out and visit with each other. Have lunch or sit with each other to just talk. I ask her to go with me sometimes and she and her sister ask me to join them sometimes. Just knowing she is there has really helped me alot, if it is only some one to talk to. Be yourself, this is an illness that effects family and friends and a wide circle of people that know the person with GBS and most of them don’t really understand the illness. Coming here to share your experiences will not only help you get more ideas but also help others in the future. Welcome to our family!
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angie, We had GBS around the same time. I had times when sound would set off my body into vibrating and I did not faint or have seizures they they would completely drain my energy. Once I was under the bells in the steeple at church and it was noon! I just froze in place and my friend stood there with me talking and holding my hand…..her son had GBS 8 years before me and she had the sense to just let me handle the noise. Another time I was in the pits at the race track and all cars were shut down. I heard the winner of the final race start up his car and did not think anything about it. He come around the corner and reved the engine. It set off actions that I can only say made me spring straight up off the ground 6 inches and my neck retraced like a frightened turtle. Again I just stood there until I could move and staggered toward my car and friends come running because they knew that I was in trouble. Zapped the energy right out of my body. I had been asked many many times if I was light headed or dizzy with GBS and I never had that happen either. But many times I feel if I had not stopped and let my head and body stop vibrating to the point it made my vision shake so bad I closed my eyes so I did not get sick at the stomach. When the vibrations were their worse they took my breath away. I learned to relax and let them slowly come back. Stress did make it predictable when I was at the checkout counter and could not find my check book or credit card or money quick enough. I got stressed out that I was holding up traffic and my handicap would be noticed that I was not able to feel money in my hands. I still can not feel if it is there I have to watch myself count money and fumble with it and coins. I try and grab them but I am slower and not being able to feel paper money makes it hard to count! But I am getting better slowly!
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I had read that lidocaine was not to be used for GBS people so I told that to my dentist. Also it was mentioned that Novacaine was not to be used. Well they did not listen to me and they used the Novacaine and it never worked till hours later after they sent me home. The next time I reminded them and they used the lidocaine. Again that did not work either. So now I am upset with them for not listening to me. I think most dismiss stuff you read on the internet. So after those visits the rest we used another drug that worked.
When I was to have a female proceedure done they wanted to also use Novacaine to numb the organ so incase I woke up I would not feel them working. Again I said NO NOVACAINE. They mentioned Lidocaine and I told them I refuse to have that used too! The kinda were upset with me. I talked to my Neurologist and he said a few other things were not to be done using certain methods. I was not to be using anything that was a nerve block. He wrote them a letter, but what he said in the letter was completely different from what he had told me! I am not sure they know what is proper and what is not to be used.
I do know that when I talked to the person that was from the hospital that was going to put me under was nasty that I should even talk to her about this problem. She knew it all. So I started with ok then you are also aware that Lidocaine should not be used it does not work. 20 minutes later the hospital was calling me back and asking questions. After a few phone calls back and forth they canceled the surgery and when it was rescheduled and what I had told them was followed and they were all smiley people! The surgery went fine.
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Helga, What I have learned from this forum from both the GBS and the CIDP people are we are all healing different but have so much in common. The fear of what tomorrow will deal to us. No one wants a bad day and we are all cautious and try to listen to our bodies. I have good and bad days but I just do what I can that day. I hope that I can finish the plans for the week by the weekend. That never happens. My mind has not accepted the “new me” yet. I always think I can do more. Even a few minutes longer and I try but that does not work. I get in the middle of a chore and I have to quit. I take a rest or do something else that is where I can sit down. I do everything in stages. Mornings I am able to do a tiny bit more than in the afternoon. In the evening I don’t even bother. That is me time. I have put in my day. Evenings are wind down time for my mind and the computer helps drain the ideas that the brain has. Then I sleep till I wake up. Some days I think this is too early and others I think I have slept in a few hours. I have learned to accept that. I can do it because I don’t have to get up to ship off kids to the bus stop or go to work. I keep a daily routine and do what I can. I have noticed that in the last 6 months that routine has got easier to keep up with. I don’t have to rest as much but still take breaks. I divide chores into levels. I still have things like run the sweeper that takes my energy right down the tube. Grocery shopping is a long process and by the time I get the stuff home I drag the stuff into the house and leave the other stuff in the car or inside the front door till I can get back some energy. I used to come home from PT and OT or swimming or Yoga and want to take a nap. I don’t take naps as much now. I am able to go out with friends and shop but I drop before they do. I am good for lunch and maybe two stores. Once big store without a scooter to ride around is too much. I try and get so much done in one day of shopping and stopping here and there I know I will never get it all down but I pick and choose what I can get finished. I usually skip getting heavy items from the grocery store or pumping gasoline. The guys can do that. I am also lucky I have my husband as my caregiver that does stuff I am not able to reliably get done. He does grumble but he does get it done. Now this Summer I was able to go out in the yard more and do things while he cut the lawn. My strenght is coming back and I am amazed how much getting my strenght back has cut down on the naps and breaks. I know I was over doing some things. But in the back of my mind I always knew the next day would have to be a slower pace day, so I could plan on that days events to be small tasks at home. Watch a movie and take care of myself. I learned to listen to my body from some of the very first messages I read here and have really never had a bad relapse. I also consider myself and have accepted the fact that I was active a few years ago but now the “new me” has earned the right to slow down and enjoy life! I hope you can do that. Maybe next year look back at your orders and produce items ahead. If the orders don’t materialize for them you also have your gifts to give already done! I am waiting for organization to fly into my window too! Honestly I don’t know how the ones that had to go back to work are able to do it! Weekends have to be the days they crash!
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Oh I did not see the one coming! Made me LOL!
[B]Purchasing a new bird[/B]
After many years of marriage, a husband has turned into a couch potato, became completely inattentive to his wife and sat guzzling beer and watching TV all day. The wife was dismayed because no matter what she did to attract the husband’s attention, he’d just shrug her off with some bored comment.
This went on for many months and the wife was going crazy with boredom. Then one day at a pet store, the wife saw this big, ugly, snorting bird with a hairy chest, powerful hairy forearms, beady eyes and dribble running down the side of its mouth.
The shopkeeper, observing her fascination with the bird, told her it was a special imported “Goony bird” and it had a very peculiar trait. To demonstrate, he exclaimed, “Goony bird! The table!”
Immediately, the Goony bird flew off its perch and with single-minded fury attacked the table and smashed it into a hundred little pieces with its powerful forearms and claws! To demonstrate some more, the shopkeeper said, “Goony bird! The shelf!”
Again the Goony bird turned to the shelf and demolished it in seconds.
“Wow!” said the wife, “If this doesn’t attract my husband’s attention, nothing will!” So she bought the bird and took it home.
When she entered the house, the husband was, as usual, sprawled on the sofa guzzling beer and watching the game. “Honey!” she exclaimed, “I’ve got a surprise for you! A Goony bird!”
The husband, in his usual bored tone replied, “Goony Bird, my foot!”
Hello Everyone!
You and your family have my sympathy. There are many times we don’t understand how fragile life really is. Your family was a witness to a very strong person that had a good life and his body just gave out before we thought his time was up. Our hearts are very heavy due to your loss. I hope that you continue to help families on this forum understand how to take care of our loved ones with GBS. I am sure you can find the information on the main page of this website. What a great gift to continue to educate people about this illness. Thank you for sharing your father’s story with us, we know he will be missed dearly.
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Helga this time of the year everyone deals with a little more stress than what we can tolerate. We don’t pay attention and our bodies have to be sutile and give us some indication to slow down. Also, being in a chair or standing or walking a little bit longer a day can also do a number on our bodies. I think you need to cut back and I know right now that is not possible. I know you have asked people for extra help. It is a busy time of the year. I think you are now feeling the residuals. Try wrapping your feet with ace bandages to help with any swelling. Also try wearing a support hose if bandages are not your thing. Take breaks where you just go lay down. Elevate your feet. REST is going to be your best thing right now. [I]Your are burning the candle at both ends![/I] 😮 I know you too well you are alot like me and keep way to busy!
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Hello Everyone!
Stacey you have a very busy schedule! That could contribute to some of the stiffness. But don’t forget the AFO they will give you the support you need especially when you are tired.
You mentioned it is stiff after therapy that involved stretching. Could you be over extending or hyperextending rather than just stretching or moving that area? Also are they giving you any exercises to move that muscle in the opposite direction to keep it from cramping or stiffening? Warm bath or compresses after exercising? The exercise will get the blood and oxygen into those areas and if you do not do warm up and cool down exercises and get the toxins out of that muscle that might be the problem. Also do exercises on the muscles and ligaments and tendons around that area. Write the alphabet with your toes as you lay in the warm bath. Do more types of movement and hold that position like they do in some of the types of Yoga. Most important give it time to rest and heal. If you were to feel pain then you would immediately STOP! Also until your strenght come back more your making a muscle that is weak do alot of work. Just the weight of your body is a task that will make it work harder. If you have access to a heated pool and do exercises in that it will take some of the weight off your joints and warm up the muscles to relax them. Just make sure you have discussed this with your PT person. I also have a rehab Doctor that follows my case and I can discuss things with her and she writes the prescription for PT on the table with heat treatments or work on the stability ball or machines. In reality it should take you only 18 to 24 hours to heal and I do machines one day and they skip a day. That off day I use the pool and do other things like Yoga. Some communities have places where you can exercise with your child which would be fun too! When we feel tired it is not a pain it is more like a stiffness or tight from swelling. Rememeber the nerves are inflamed with this illness. Keep a Journal of your activities and you might see where or what area you are over doing. Running up and down the steps all day and chasing a child around and picking up toys and grocery shopping or going to the mall all are enough to put your daily routine over the limit! Also, make sure your shoes are proper fitting. They can cause ankles to ache or your back, hips, knees and also your calf muscles to feel uncomfortable. Keep us posted! You are an amazing busy lady!
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Welcome jbeatty and Tucker! The best thing about him getting this at such an early age is that he will not remember how difficult it was. He may have some residuals like the fatigue after a day of playing hard, but he will not recognize it as anything. He will play the next day as much as he can and then crawl up into your arms for a hug and watch cartoons. Kids get over things so well. I would not even mention it to him but make sure it is put on all his medical records. When you list allergies I would also put right in that list tetnus, flu and pneumonia and the other boosters you mentioned. As research goes on that list might be able to be shortened. It is better to list it and have a discussion about them with your Doctors each time.
The chances of any of us getting it again is very slim and so slim that I would not let that add stress to your life. Stress can be more damaging to our systems than the chance of us getting this again. But like you said you are concerned and should be about all the shots that we get in a life time. But as you go along you will become more educated and form your own opinion. As Tucker gets better and plays harder you might see a few times he has a relapse from doing too much. We all do. He might not be able to go swimming at the beach and play hockey all evening. Then again he might be able to do more than we ever could at that age! You just have to be patient and wait and see. As far as how to raise him? Don’t treat him different! Make sure you tell him you love him every day and give him hugs each time he darts past you so he does not have to take a bath or go to bed when you say! Life with a child goes too fast and then they are 32 year old! 😮 Enjoy the holidays like they were his first! Take photos, watch his eyes light up as he takes everything in all at once. Notice how fast they talk without taking a breath because they are so happy! You have brought him a long way and now it is your turn to take that deep breath too!
Hello Everyone!
Hello Everyone!
Jenny I am sorry for all the questions. It is nice to meet someone else with GBS. You know what each other has been thru and what they have gone thru. Even when each of our cases are very different we share alot in common too! You have come a long way. Keep up the good work! Again sorry for all the questions. You will be a great asset to this forum. We find many medical teams have problems with dx it seems yours come up pretty quickly with a plan of attack and got you thru this fairly well.
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I have a few friends that were scared more than me when I was taken to the hospital. In such a panic they could not even visit or call the hospital. Some friends don’t bother to call because they knew I could not leave the house to go shopping or to lunch. Everyone seeded to have their own excuses. I do realize they have their own lives but what did I see in them in the first place? We spent alot of time together. So after thinking about this I seen that many people are not able to be caregivers. They are not nurturing and don’t know what to ask. They did not have nurturing parents and some have never been ill themselves. Others have not had to take care of a pet, not to mention take care of a sibling or spouse. Then you get what I call the Want-a-be Nurses. They can not let you do a thing for yourself. They want to feed you a pot of chicken soup a day to make you well. They talk non stop and when you fall asleep they wake you up to see if you are ok. As you take a pill or a spoonful of soup they open their mouth up to help it go down easier! I just get my pillow in the right spot and they come over and move the pillow and straighten up the blanket so it is not tucked under my feet. They move my kleenex to the top of the dresser across the room and they add more ice to my glass of water that just had become warm enough for me to drink it comfortablly without getting brain freeze. Oh and they mix my food all together with my mashed potatoes so it is easier for me to eat! They blow on my food to make sure it is not too hot! Heck it was sitting out on the counter for 15 minutes before they remembered to bring it to me. Believe me it is not hot anymore! I just sit back like the Princess and loved to watch people struggle to figure out what I needed! I would not have traded them for anything! Oh and to the mystery neighbor that brought my trash cans and recycle bins up to the garage door and I never found out who you were. I thank you! By the way they are blowing down the street today!
As far as a reliable support group I have my husband and my son (32). Between these two guys I had caring support. When they were going to eat they asked me if I wanted something to eat or drink. When they went to the store they asked if I needed anything. They let me keep my dignity, privacy and independence, but they were there doing things around the house and working and checking on me in one way or another. If something needed done and they did not notice I could mention it to them and they would do it without complaining. Even two years later there are still many things I am not able to do consistantly. I do what I can. Some things don’t get done until I take time to do them. Not having the strenght or energy still keeps me from doing everything I used to but it does not matter these guys are guys and not perfect! I take second place when it comes to sports on tv or a good guy movie or something on the History Channel. I still would not have traded them either! The dogs are not on my schedule anymore and don’t like to eat what I feed them. I tell them sit and they lay down. They don’t like to come when I call them! I call them and they run to my husband! What is up with that? I have lost control! Hope you see how important it is to laugh at this all and be thankful for what we do have, it can always be worse! Your right, once you look better, the less support is offered. IT is the law! I am not sure where it is written. I must be looking really good now! I must be more beautiful than before! No one calls and no one makes me lunch or dinner any more. No one calls to invite us to their house for holidays. I guess our routines all change! I hope they call for help! I remember what they offered and how irritating they were. I will return that back to them double! I can move a box of Kleenex to the other room rather across the room! I can freeze their glass of water solid! I am writting a book on how to be a good caregiver! It will be a comedy! I am sure you could help me write a few chapters. Laughter is the best medicine! Some can only offer a smile, some a hug and some some tears! What I need is laughter! Fill my house with laughter I don’t live in a library, hospital, a funeral home or even church. If you visit, bring laughter with you! With the holidays coming up I am going to make sure I bring smiles, hugs and most of all laughter with me! As someone always says….if life gives you lemons, make lemonaide! Don’t get mad, get even! What goes around comes around! Life has taught me to be patient! We were not all created equal! Hope things get better for everyone!
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Welcome Jenny! How long were you in the hospital and were you treated with IVIG or PP/PE? Did you receive any kind of rehab? Did they do any treatments toward your hypersensitivity? The chronic fatigue is very common and one of the things that most of the older members here still have to deal with. You mentioned that it was an “absolute nightmare of a journey”? Were you on life support or misdiagnosed? Did you see a Neurologist that was familar with GBS before? Do they have an idea what caused your GBS? I am glad you are hear to help others. We also dedicated alot of our time helping the caregivers too. Without any of these people we would not be able to educate anyone that has to go thru this. You have come a very long way in a very short time and still have a long journey ahead of you like most of us do. I am glad you have found us. Many more will be around to post also. It will be interesting to find out what they do in other countries. Very helpful to know we are not alone!
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Linda> I stretch and do my breathing and warmup and cool down exercises each day to keep me active, That work out also works on balance.
I never exercise to the point where it causes pain or I immediately stop. I could be doing it wrong or doing damage to an area. If that happens I go back to rehab or my personal trainer. Actually I try to exercise after a good nights sleep. I never exercise when I am tired or I get sloppy and could cause an injury or not do the exercises the right way to get any benefit from the exercise. If I feel stiff the next day it might be because I did not do the cool down exercises afterwards or I did an exercise too many times for the first time. Which does not happen too much anymore.
Around those I do weights every other day. (according to the area I am exercising even the left side varies from the right side) One pound or less was common to start out. I use different weights for different areas. When it gets too easy I increase the weights. I might do an exercise with two pounds several times and then finish up with the one pound weights also. I am doing the movement and not trying to show off or set a record. This program is custom made for my body. The days I don’t do the weights and machines like the treadmill, I go into the heated rehab pool (94 degrees) and work out. I might go into a quicker paced class in the 84 degree pool but I have to keep moving or I get chilled. Just recently I can take a warmer shower and can go into the warmer water in the hot tub for a few minutes. Before I was not able to stand that hot of water and I took cold showers or my body just went into a panic to get out of the warm shower or hot tub. As my body heals I change my routine and the things I can do for exercise. As my breathing and stamina increased I am able to do things in the gmy and dance studio. I am even gaining more movement in my body to be graceful. I can extend my legs and arms and reach!! Many of my joints used to move but the rotation or range of motion was just not there. I worked on those that I needed daily that helped with things like turning a key or getting change from a cashier or opening a jar.
Getting back to the time frame…..I feel great from the stretching, range of motion, balance, breathing exercises. Usually one of the types of Yoga or martial arts programs. I like Tai Chi and Qu gong. After I do them I seem to have more energy. After the weights that only take about 20 minutes I just pace myself for what else is planned in my day. Swimming is what I need to take a nap after. Not that it zaps my energy but it does relax my whole body. I sleep really well and feel rested when I wake up after swimming.
I do look forward to exercising! I go to the spa/fitness club and I have friends that are their to talk to. It gets me out of the house regularly and on the way home I can run into the grocery store to pick up things I need. I do have some days that I just come straight home after exercising especially on the days I have a Doctors appointment or have walked on the treadmill I skip going into a large store and doing more walking. You just have to see what your limits are and listen to your body and make sure you are doing something you enjoy.
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Miss Darcy I just could not help but post when I seen a red flag in one hand and happiness for you in the other hand! I am impressed that you are able to 50 hours at work this week so far, but also fear that might be why you are not feeling so good and that you might add hours on to that amount. But on the other hand I am very happy you are here to tell us that you are able to work. Sorry I have mixed emotions! Stay well!
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Boy these studies are interesting as they are important. I wonder where this will take us? A blood test to detect GBS or a flare up for CIDP before it is noticed by the patient to cut down on the degree of the relapse? Stem cells use that repairs quickly? A gene that is present for the people that suffer from any of these diseases? Interesting! :confused: This leaves me with many questions!
Hello Everyone!
Hello Everyone!
Lean on us for a phone call or a private message or a post to the forum. We are all here for you! You and your family are in my thoughts and prayers. I agree with the others, we are here for you as much as you need! I lost my Dad, December 22, 1995, I know he never would have picked that day to leave us. He loved Christmas! But he is in my heart each year, each month, each day and each minute. Enjoy the memories each day they will help you get thru all this confusion, frustration and fear. We know what it is to loose some one we love. Their best present to us is those memories!
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Ron as the others have said Welcome to this forum. My onset of GBS put me on life support quickly and within 9 weeks I was back home. That was followed up with OT and PT and I am still healing slowly. I was told that the sheath of the nerves healed a mm a day and that slow repair would take a 6 foot man longer to heal then it would for my 5’4″ frame. The first things to show problems like the hands and the feet are the longest nerves in the body and therefore the last to heal. So far that has been the case for my residuals. I am still not back to work because of that problem, but also the fatigure which is getting better. At first I slept 20 out of 24 a day. Now I still need 10 hours of sleep in 24 hours and don’t seem to need as many naps a day. You will learn to pace yourself. There is no way you will be able to tell work how long it will be. You should also, when you go back work a few hours and gradually increase those work hours a day. You might want to keep a Journal to see how you are slowly progressing with your healing process. Now it is coming back quickly but then it takes longer and longer for you to see big steps. If you keep a journal you will be able to see a steady climb with some set back. We all have good and bad days. Now I see things not get better day by day or even week by week but now month by month. It is depressing so keep the communications open with your Doctors and Rehab. Also use your sense of humor to get you over those bad days. It is frustrating and you need to stay possitive through all this. Don’t be ashamed to ask for help! We are here to give you support in any way we can. We will be realistic with you also!
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[QUOTE=Sharon]wow … it is funny! My husband thinks this stuff is in my head! Yeah … I get them under my chin after a big yawn sometimes and even on my inner thighs … ouch! Glad to know I am not alone and it is not in my head![/QUOTE]
I am glad to see your post! I thought I was the only one that was getting the ones under my chin. I get them when I hold a pencil or pen in my mouth while at the computer. I think I might be putting a little suction on them. So I have tried to get out of that bad habit. I also get them after I yawn, but that was not at the beginning that only has been happening since about my 18 month. I can feel it starting and I try to relax to avoid it happening. The first time it happened I was in a panic. It felt like my tongue was swelling. I could not breath thru my mouth. I had to talk myself into relaxing and breath thru my nose. Once I was able to do that it started to relax. I could not get up out of the chair and I could not make any noise or call for help. It was one of the scariest things that has happened to me. Now they hurt and I can feel them move from about my collar bone up my neck and into my tongue. That muscle aches for a few minutes after. It worried me because I thought I was taking a seizure but it went away to fast and did not effect anything else. Strange side effects! I am glad you brought up this thread, I am sorry you are dealing with this too but now we know we are not alone. I also had a terrible time with my rib cage when I would sit and twist slightly. It was like a rib was twisted and out of place. That is very painful too! It does not happen as much now. I also get them in my ham strings, but they have always been tight and hard to stretch out in exercising and sports.
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Sonja you need to get your Dad or another family member to be your advocate also. Have them demand that a Lumbar or Spinal Tap is done to rule out GBS. That is the only way they can possitively identify it is what it is and that is why everyone keeps asking if you had that test done. All those other tests will rule out other diseases. Keep up that great attitude! I am like the others some of what they are telling you goes in a different direction from what I was told. Muscles don’t tingle and go numb that is nerves. Digging deeper will get more results on this treasure hunt!
Hello Everyone!
As of right now count me in!
Once it gets closer they will announce the host hotel where we can stay and usually is that where the meetings are held in their banquet halls? I think that was the way it was in Phoenix? Also there was ones that were familar with that area and met ones at the airport and traveled to the hotel together and made sure each others bags were accounted for. We can help each other! I think there was ones that shared rooms to cut down on the cost too! Also, does the local chapter for that area have a booth too? I do remember meeting others was not a problem for people at the other places. It would be nice to visit the Windy City again I was only there once and only remember the train station. That was right before it was ruined in a movie by a run away train. I am sure someone remembers that scene! I just remember alot of interesting topics come out of the last one! The photos were great! The stories were even better!
Hello Everyone!
Hiccup [B]IS[/B] another odd quirk to add to the long list of “after GBS”. I just laugh now when I get on the phone and talk or after I eat I do get the hiccups even now after two years. They only last for a short time, but it is like a infant or a puppy that gets them often. I just start to giggle at them. You can take a drink of water and they might go away but a few minutes later they are back. So you hold your breath and they go away. One thing you might try is to look at the clock and count the seconds between your hiccups. Just that amount of concentration will make them stop. Besides I can not giggle when I am watching the clock!
Did you get bouts of yawning too? I would lay down and turn out the lights to go to bed at night and I would start to yawn one after another till my jaw hurt. I might yawn 300 times before I fell asleep, I guess they stopped or like counting sheep I fell asleep counting hiccups! When that started in the hospital the staff would leave the room. If they stayed with me they would all start yawning for the rest of their shift and I would be sleeping soundly. We did check and there is no medication for hiccups. My cousin had them once for weeks! He was hospitiallized with them. He was not able to go to work or drive. He become exhausted. Oh great something else to zap our energy!
Next time just giggle or laugh at them it is the best medicine!
Hello Everyone!
Ambridge, Pennsylvania
It seems strange that this is the only board that I type quick posts. It seems really weird! Should I be posting a graphic or adding a little bit of information about this town? LOL Nope it is just fun to visit and make a short, quick post! Happy Holidays Everyone!
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Brian your question was [B]Is there any medication that can treat the bedsore, and can it heal?[/B] The wound care team is there to be putting on bandages over the areas that are open. They are trained to spot any infections. They should be having the staff apply medicated creams daily on the areas that the skin is breaking down. Areas that are in contact with the bed and rubbing consistantly. Backs of arms, buttocks, shoulders, back of head, back of heels and between the buttocks from being moved from side to side that tears the thin skin. Using pillows to lean her from side to side and lift up the arms from the bed with pillows. Once she is able to do more movement herself then you will see other areas that she will rub just with energy from wiggling her toes or sliding down the bed if it is elevated too high. Elevation of the foot of the bed will help take pressure off areas too just like chaning the elevation of the head of the bed. They even took weekly photos for my files of my bed sores. They measured them also. That way it was not depending on anyones memory. They could show the results they were healing or that another area appeared during this time.
About the speech that will come as she gets stronger. Right now the amount of strenght in the diaphram and lungs is very weak to support speech. The others are right about not rushing that phase of her recovery. Use the hand signals and any movement of the eyes or mouth for different words she will use. Also the hospital should have a chart you can use to communicate with her. Now that she might be able to see what you are pointing to she can let you know you are pointing to the correct picture. For example these charts have pictures of Pain or No pain they can point to. They also have letters to spell out words.
I am glad she is able to start opening her eyes that will really help with the fear and loneliness. If the hospital does not have the communication chart they are available on this site in the link for Our Store. Along with some other pamphlets for patients and caregivers to read and get good ideas. Remember keep things possitive and make a big deal about the disease reversing and things coming back. It will be slow and as they add Occupational and Physical Therapy to show or remind her body how to do things again she will start to get frustrated it is not happening fast enough. Show patience and just remind her that GBS also means getting better slowly. It is hard to put a time frame on just how slow, slow is! Keep things possitive and watch for depression. That is when you need to show her you are not fearful for her and that the progress she is making is possitive progress in the right direction. Also remember that the number one thing you will never understand is that fatigue means being more than just tired. It is more than just being exhausted. It feels like every movement is draining your battery that takes days to recharge. Just having company or listening to a conversation can be exhausting. Later chewing your breakfast can cause you to fall asleep during your breakfast. You have to see the humor in all of this recovery. The patient sees it as failure daily they feel like an infant not being able to break out of this body. The mind is working overtime wanting to get home and do everything for theirselves. There will be many set backs but there will be a big difference like learning to walk like an infant and just trying what works or like the adult she is and her memory knows how to work the body is not responding. Being able to use a sippy cup with handles to help balance their drinking cup will be a BIG DEAL and show independence. Make a big deal about it! Those tiny things all add up to recovery. Just standing or sitting on the edge of the bed might seem like a minor task to you but to her it will be one step closer to getting back home and gaining her independance again. Put yourself in her position and see how big of a deal just being able to open her eye half way must feel! She can see the room around her again. See the smile on your face and see the fear on your face and read your body language now. You should start to celebrate life now! I am happy for your family. What a great gift to see her GBS is starting to reverse. She will now be like a child and discover daily things feel different or she can move that finger or arm or foot a tiny bit farther on Friday than she could on Monday. Keep a Journal of her progress so she can see she is making progress. You might want to ask if her vision is blurred or watch that she is blinking or able to make tears. Eye drops will help if she is not able or her eye feels dry. The nurses might of already ask her these questions, check with them. I had double vision for 10 weeks while the muscles are too weak to allow my eyes to focus. I seen two Doctors, double the number of Nurses, Two food trays and four feet at the end of the bed. It was hard to watch tv because everything was double…..some days over lapped and some days two whole tv screens. It was also hard to focus on a person face because they had four eyes! Some days they had two heads! Just be creative and deal with the important things and laugh at the weird things that will happen. Once she is strong enough and gets that trache valve put on she will talk non stop! Be prepared! Take care of yourself!
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This is a list of some other Food Sources of Potassium ranked by milligrams of potassium per standard amount, also showing calories in the standard amount so you can make better choices and get a variety of foods. (The AI for adults is 4,700 mg/day potassium.) So you can see you would have to eat many bananas to get the daily requirement. Add Potasium from other sourses too. Tomatoe Juice is a great source for the amount of calories you consume. Even Yogurt and you are getting one of your dairy servings in the process. I know this because my blood tests show my potasium levels are low. I tried the prescription potasium pills and they gave me side effects that were easy to live with. Changing my diet to get a variety of foods that gave me the same amount as that pill was easier. The list below might help you double check your menu to make sure you are getting enough daily.
[B]Food, Standard Amount Potassium (mg) Calories[/B]
Sweetpotato, baked, 1 potato (146 g) 694
131 Calories
Tomato paste, ¼ cup 664
54 Calories
Beet greens, cooked, ½ cup 655
19 Calories
Potato, baked, flesh, 1 potato (156 g) 610
145 Calories
White beans, canned, ½ cup 595
153 Calories
Yogurt, plain, non-fat, 8-oz container 579
127 Calories
Tomato puree, ½ cup 549
48 Calories
Clams, canned, 3 oz 534
126 Calories
Yogurt, plain, low-fat, 8-oz container 531
143 Calories
Prune juice, ¾ cup 530
136 Calories
Carrot juice, ¾ cup 517
71 Calories
Blackstrap molasses, 1 Tbsp 498
47 Calories
Halibut, cooked, 3 oz 490
119 Calories
Soybeans, green, cooked, ½ cup 485
127 Calories
Tuna, yellowfin, cooked, 3 oz 484
118 Calories
Lima beans, cooked, ½ cup 484
104 Calories
Winter squash, cooked, ½ cup 448
40 Calories
Soybeans, mature, cooked, ½ cup 443
149 Calories
Rockfish, Pacific, cooked, 3 oz 442
103 Calories
Cod, Pacific, cooked, 3 oz 439
89 Calories
Bananas, 1 medium 422
105 Calories
Spinach, cooked, ½ cup 419
21 Calories
Tomato juice, ¾ cup 417
31 Calories
Tomato sauce, ½ cup 405
39 Calories
Peaches, dried, uncooked, ¼ cup 398
96 Calories
Prunes, stewed, ½ cup 398
133 Calories
Milk, non-fat, 1 cup 382
83 Calories
Pork chop, center loin, cooked, 3 oz 382
197 Calories
Apricots, dried, uncooked, ¼ cup 378
78 Calories
Rainbow trout, farmed, cooked, 3 oz 375
144 Calories
Pork loin, center rib (roasts), lean, roasted, 3 oz 371
190 Calories
Buttermilk, cultured, low-fat, 1 cup 370
98 Calories
Cantaloupe, ¼ medium 368
47 Calories
1%-2% milk, 1 cup 366
102-122 Calories
Honeydew melon, 1/8 medium 365
58 Calories
Lentils, cooked, ½ cup 365
115 Calories
Plantains, cooked, ½ cup slices 358
90 Calories
Kidney beans, cooked, ½ cup 358
112 Calories
Orange juice, ¾ cup 355
85 Calories
Split peas, cooked, ½ cup 355
116 Calories
Yogurt, plain, whole milk, 8 oz container 352
138 Calories
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Caryn Please consider taking a few things for the holidays to your Brother to enjoy. A few things that are very meaningful from your past holidays. It will mean alot to him. Also, put some of those favorite things around your place to comfort you and start your own traditions. Buy yourself something that you have wanted that you would not spend the money on. Treat yourself this time of the year with a book you wanted to read or a new pair of gloves or slippers. Now you have to concentrate on taking care of yourself too! Take control and make this a safe Winter. Call me when you have time, I understand you have been busy! Please take time for yourself and call anytime.
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You did not mention rehab, but I am guessing that you received that treatment. Poor balance can be from not being able to feel the bottom of your feet and where it is placed. The main reason is usually the muscles get weak. You did not mention any exercise program that you did or are still doing. Exercise is misunderstood. It is not a program that makes you burn out quickly. No pain, no gain is not the way to go. Activities that you enjoy and movement are what the GBS person has to consider. I recommend trying Yoga. Get yourself a tape or watch tv channels for regular programming for Yoga. Inhale is on the Oxygen Channel in the early mornings and can be taped for use during the day. Also on the Fitness channel they have a Yoga program on several times a day. Yoga just is not slow movement but works on breathing, range of motion and relaxation to get control of stress. It is nice because you are doing one position and holding it to get those muscles, ligaments and tendons to stretch. No pressure to do so many in a short amount of time like the quicker cardio exercises that wear you down quickly. I also recommend exercise in a heated swimming pool. It makes movements easier on the joints and take the weight off the weak muscles so they can work efficently with resistance from the water, also freedom from gravity. Floation devices are used for your safety and part of the fun. Again these programs are geared to people with RA and other autoimmune diseases and syndromes. What ever exercise program you choose has to be something you enjoy so you will continue the program. Stability balls or exercise balls are good for strenghtening the core muscles. I use them along with the movement in the water. One pound weights are good to use to start to strenghten arms, wrists, hands and shoulders. It is the movement and use of muscles that keep them going. Later in your exercise program you will see that standing on one leg that has strong muscles really helps gain that balance. Without strenght you will not have any balance and struggle. Walking is good and mowing the lawn but it is not perfect it only works the joints in several directions and take a toll on our bodies. The rest of your body can be worked in your exercise program. Practice good posture that works those areas. Back problems are from weak abs and not just weak back muscles. Your doing a great job, but maybe you have stopped challenging the right things?
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Norb, Thank you for sharing that photo it made my day! He is beautiful. The holidays are going to be fun for his family. Make sure you post pictures of his first this and that. Brings back so many memories! ENJOY! 😀 [I did have to edit this and change her to his!] Sorry KAI! Aunt KIT did not have her glasses on her face and read the facts first!
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Hello again Brian! I am so concerned about your Mom and her condition. I am upset with the healthcare system. Why was my care so well done and your Mom’s care not up to par? I think they can get away with it and attitude and training. Be there checking up on them. The squeaky wheel does not have to be LOUD and RUDE but just enough to remind them you are going to ask that as much is done to keep your Mom comfortable as possible. The stomach tube is easier on the patient. Anythinig you have to have in your nose or mouth is uncomfortable. There is risks with any of those things but the PEG makes the daily routine easier too. Both need to be cleaned or flushed several times a day as does the trache. It does sound like she is getting some movement back? Which is a possitive thing. Just use what you have to communicate. Be possitive and patient with her progress! We can not say that enough. No matter how frustrated you are multiply that by a few dozen more and that is what it feels like to her being in this condition. Remember she can hear you so that is right now your best line to keep her possitive. Laying there is scarey. Each person that visits should identify themselves. Even just that much will let her know who is around her. They should be explaining what they are doing also. Right now any communication with the staff is a visitor in her world. If they sound like they are smiling with their voices that will mean so much to her. I would talk to her about the weather, news around the world that is interesting stories to her. Also talk to her about religion and the holidays you are preparing for at this time of the year. Let her know you brought in some decorations for her room. If you have a prayer list at your church make sure she is on that list. I had many people add me to their prayer lists. You can also give them your address and have them send you Get Well cards! It is amazing how many will send cards. Have you been able to learn from her, if she is in any pain? If no pain it would be nice to have either yourself or one of the girls to give her a foot massage and put moisturizer on her feet. The hospital can supply the bottle of cream. Also they can give you some very nice cream you can put on her hands and elbows to stop the dry skin. Just this daily hand cream will prevent cracking and itching. Over the period of time she is in the hospital it will be better than sending her to the spa for a pedicure. It also lets her know that someone cares. Comb or brush her hair daily for her. That will let her know you care how she looks and she will know that she is presentable. When I was in the hospital they would give me these dry shampoos that felt good but all they were was a fancy shower cap with powder in them and warm water. I thought they were giving me a shampoo and it made me feel so good. 5 weeks later I learned it was mixing with the oil in my hair and I now had cookie dough for hair. They called it GBShair. After that they gave me a real shampoo once a week which made me feel like a Queen. Tell her she is the Princess or the Queen and do things that she will enjoy. it will make her feel human and let her know you care. Also ask the staff what kind of things are available for patients. Some things like reading them their mail or bringing her a magazine or writing a letter is things your family can check into later. Volunteers are an asset to any patient. If she liked poems buy her a new book of poems. It will give her something to look forward to hearing. Make her day interesting! A joke of the day! Make it interesting for you too! The fact that they are ready to move her to a new unit and that she is able to fight an infection is good news. It tells me her body is trying to protect its self and starting to work properly. Let us know how things are going. Let her know we are here with well wishes and prayers. You and your family are in our thoughts! VENT here if you need to! Stay strong!
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Welcome Brian! My prayers are with your mom and your family. I can understand what you are going thru. Remember your mom is trapped in her body and she can hear every word you are saying. Hearing all the noises in the whole hospital. I had the double vision and was not able to read or watch tv. You might want to read to her. Maybe a good humorous Christmas story. That is what my friend did for me. That helped make my day go faster and I felt safe when she was there with me. She let me get plenty of rest and stepped out for her meals when I got mine or I was sleeping. She brought someone in to wash my hair and set my hair for a holiday present. That was a great day and it made me feel really good. You might want to read to your Mom or be there to make sure the tv is on for her favorite tv programs so she can listen to them. Don’t ask a lot of questions that is exhausting for the GBS person and don’t touch them alot that might cause pain. See what she tries to respond to. The GBS will reverse itself with the help of the IVIG (which did not work for me) or the Plasma Phresis that will wipe out all the IVIG. I am not sure if either one of them can be given with Chemo. Talk to her Doctors and have them explain to you what to expect. What your options are. They also might be following the guidelines of her insurance company also. I was in the ICU for a month before the GBS started to reverse. After it started to reverse I got strong enough to be given the trache. I still was not able to talk. I was lucky that my eyes were wide open and could not shut. Your mom is in a very silent world not being able to communicate. TALK, READ and be yourself. Read articles out of the newspapers and off the internet that you think she would enjoy hearing. Keep everything possitive, humor is going to be the best medicine. Read outloud to yourself. Tell her what you have been doing and who you have seen. Tell her about us on the forum. Take in a daily joke to tell her. Get on a routine and tell her that is what you are doing. Tell her about the change in weather. Keep her mind thinking of possitive things. Tell her about a family trip that you were thinking about that made you smile. She might not be able to smile today but she will feel warm inside that you have not given up on her. Now that she is not using her sight she will be more in tune with your voice. She will feel your mood, strenght in your voice, your hope in what you say. There might be a liason in your area so contact the GBS foundation. They might be able to send you information and so visit your Mom’s room. Some times just talking to someone that has gone thru this gives you hope that it will be ok. I did go to a different unit once I had the trache so they could wean me off that. Then I was able to move they gave me occupational and physical therapy to get the muscles moving. The nerves heal when she rests, so make sure she gets plenty of rest. Don’t be surprised that she might want to sleep 20 hours out of 24. Have people from your church or family send her cards to the hospital and decorate her room with them. She will not be able to see them but you can read them to her and describe the picture on the card. When others come in they will comment about the cards and decorations. I hope that she is moved to her new room soon. That is a step in the right direction. GBS does mean Getting Better Slowly! You might not be able to use the cards for words yet but that is a life saver and a time saver later. Is she able to move her head to the side or her toes? Right can mean YES and left can mean NO That way you can atleast ask her Yes and No questions. Be inventive and be patient! Vent here and ask as many questions as you want here on this forum. Take care of yourself. We rely on our caregivers so much. Be strong!
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sabrina there is no way we could have prepared you for this but it is very common. It is the body’s way or the brains way of dealing with any pain. The feeding tube was tramatic for the body to go thru and with the nerveous system being compromized you are going to see alot of things that are hard to deal with. I went thru the same deal and I had Halucinations for two days. They were keeping me comfortable with Morphine and that caused the day terrors and the worse nightmares. At one point I remember asking my family to call 911 and take me to the nearby hospital. I remember hearing some nerveous chuckles. Most of all I could hear the fear in my husbands voice and the determination in my Son’s voice to make me understand that was not an option. The hard part for me was that I had two dreams over and over and over. The mind is a complicated machine and the way it deals with illness and trauma is different for every person but the stress, fear and the hurt it puts on the family is enormous. There should have been some staff at the hospital to explain this to you. ICU is no place for children. I am sorry that your daughter had to experience that, but it will make her stronger when she realizes that that whole experience was your Father suffering a dream that seemed very real to him. I was so frustrated having the same dreams over and over and what was happening to me was very upsetting. I know the staff of the hospital was glad when I woke up. I know for a few days I looked at them like you are not my friends here. I woke up confused until all trust come back and the confusion disappeared. It was like living the Wizard of Oz…..those people were in my dream…..I was talking to them and they were talking to me but what I seen them doing was not real. Seemed real to me! Just keep talking to him and walk out of the room if he seems to be confused or wants to fight. He does not need to stress out any more whether the problem is from his attitude or from drugs. Do like you did and discuss it with the staff. Remember they see this all the time. Think how heart breaking that is for them to see someone going thru this. They are special people. By the way I never did have a nerve conduction test once they seen me start to improve they did not even bother to do it. They just went by what I was telling them. Even now I have some areas that are numb but they function. Muscles are strong, movement is good. I just have good days and bad days where things feel different and I can not explain how they feel. Sometimes it is like holding on to the sweeper too long and my hand goes numb but the feeling does return in a few days. Other times it itches or burns like it is hot or it burns like it is cold. I have always taken those changes as good signs of the nerves healing. Changes are good signs. It shows the body is changing as it heals. Remember to see the possitive part of this and not dwell on the negative. As soon as you can take pictures of your Father smiling and show them to your Daughter. Give her one of the photos to keep. Show her that he is feeling better! Soon he will want to see her, but give that some time. Everyone is right what you are seening is not your Dad. It is his brain trying to struggle to regain control of his body. Signals are getting so double crossed. We feel your frustrating! Be there for your family and give them lots of hugs that is the best therapy when things are hard to understand. Communicate with the Doctors they have a plan that they might change from day to day. They give you the options but have reasons for changing their minds. Keep us posted!
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Make sure both the patient and the care givers pace themselves this is a long process. Just having a baby is hard enough on her body. I can not imagine what it is like to have this on top of that. REST is what heals the nerve sheath. Slow process and the hands and feet were the first to be effects and will be the final to heal. They are the longest nerves in the body. Keep things possitive and help with the baby is very important. Maybe not lifting depending on the strenght she has that day but also trying to hold something that is moving is very hard. Supervision is very helpful. She needs to concentrate on herself. She needs to listen to her body. Each day will be different. It is a roller coaster ride for the caregivers and also the patient. Ask as many questions as you want this group is very resourceful. Very supportive and good listeners. Venting is permitted!
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Welcome AV8TR! I am glad you are posting to the forum. Your questions will help others in the future. Are you still seeing your Neuro regularly? He might want to follow your progress closely. I am sure he will also be in touch with other doctors to follow up on all your blood tests and progress or functions. They also can give you some exercises in PT to help get function back as those areas get their feeling back and function increases. Many have had bladders that don’t completely empty or leak or don’t give you any warning that you have to void. Please be patient. GBS does also stand for Getting Better Slowly.
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Welcome Mike you are in the right place to share information. You might think about finding the support group in your area, so you can share your story with them also. It is very important to educate the medical community but also the friends and family of those that person that gets GBS/CIDP and all the variations. We hold a very high reguard for our care givers here on this forum.
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Suzanne you are in my thoughts and prayers. Your post has just stopped me in my tracks and I am at a loss of what to say right now. I can not get the right words to reach my fingers! I just can not imagine what is going thru your head right now. It is hard for everyone to understand. It has to be very scarey! PM me if you need a voice on the phone and I will give you a call. I can say that you don’t have to leave this family and can still get support from us. I have learned alot about life from this group! Most of all I have learned to ask questions and open up the communications between me and my Doctors. I now ask questions and tell them what I have learned about GBS. I had one Doctor tell me she thought I had CIDP because I am taking too long to get better! I told her that she is wrong I am getting better but it takes time. Now I know you will be gathering information on MS just like you did for GBS/CIDP. (((Hugs))) What would we do without our computers?
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This is a very hard situation to be in and a month ago I was in the same similar situation. I had been in contact with a gentleman from a nearby county and he kept getting passed around from nursing home to nursinghome and then after three heart attackes he called me from the hospital. Asked me to bring him a few things and I bought them. Called to tell him I would be visiting and his cell phone was full of messages and not accepting any more. I had called that after I called his hospital room and got no answer. I can only feel I let him down also. But they I remember all the hours we talked on the phone. I think his health issues were just too much to deal with and it was not the GBS that worried him. His body just gave out!
I hope your friend had a full life like this gentleman did. It is always hard to let them go but we will always have their memories visit us from time to time.
You are in my thoughts and prayers!
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Guitarman I sent you a private message. Once you sign in to the forum you will see at the top of this discussion board a place where it says Welcome, Guitarman, you can click on there where it says “Private Messages” and open my PM and it will give you a site that contains a video of a GBS person that now is able to play his guitar and it might give you hope and a goal to work toward. I worked on all the tiny muscles in my fingers, hands and wrist to get them to work like they did before. It took time and I never gave up hope. I still have some areas that need work but my range of movement has increased so much. First time I pulled up to the drive thru window at my bank and could not turn my wrist to get my reciept back was terrible. Now I can get the change and doggie biscuit they hand out for my traveling partner. Pretty bad when the teller knows my dogs name but not mine! Keep reaching for those strings!
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This is just another example what our precious caregivers go thru. Please don’t feel bad about coming here to vent. By asking questions that is how we get suggestions to make things better. All the gadgets that are available for the patients now are amazing and as your husband recovers he will be able to use more and more of these items. I agree with the others that once the GBS starts to reverse and the healing process starts it is a slow road and patience is a virtue! I have talked to several people that post here that are slower in recovering. As you know everyone is different. The sheath of the nerves grow at a very slow rate each day and that process takes years to completely reach the longer nerves in the arms and legs. At this stage your husbands body is still leaking energy out into the muscles and causing fatigue. This can be mistaken for not caring or giving up or he/she has a bad attitude. From what you have mentioned it just sounds like frustration is present but he is trying to keep possitive and that his sense of humor will help greatly. I don’t remember reading if he has had nerve conduction test and biopsy but that would be a good indication of what is going on in his body also. Physical and Occupational Therapy should be continued to be given and just be geared to his body and movement to keep things moving. Making sure they don’t over do it and set him back. Rehab is a very slow process and I am still working on areas that are slow healing. I have talked to a GBS patient that lives close to me and he is in a very similar condition to your husband and has not given up on his body. Amazingly he is still showing signs of improvement after 16 years. Now he can actually crawl up the stairs to the second floor. He is able to conduct his business from him home and just paces himself. So be patient you are still in the early stages of this illness and others have been in wheel chairs after long stays in the hospital and now up and walking with a walker/frame/rollator. Some have actually weaned themselves off of the cane. No doctor can tell you how bad it will get or how long it will take or how much damage will be done. As his caregiver you need to take care of yourself. Stress can do a number on our caregivers and they do too much trying to do their jobs and our jobs and hold up the world. Sounds like now he has things under control and is just waiting to see improvements. He is adjusting and taking advantage of good days and settling into a routine. Don’t take on too much responsibility and pace yourself so we don’t have to worry about you becoming ill. Communication between the Doctors and Rehab and his needs and your needs should be addressed. Anything we can do to help you to make it easier let us know. I am sure there are liason in your area that can call you or may be able to visit with you and give support. Till then you have your extended family here. You can send me a private message and I can call you if you would like. That little bit that one of us can do to help get you thru another day would make us feel good! Remember we have all been there in one way or another.
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Terry it sounds like today was a bad day! I am sorry you are still having that heavy heart feelings, which is very normal to miss someone you loved very much! As far as your plans for tomorrow I think they are going to make it a special caring day for everyone that knew her. Also thinking of calling your Brother In Law is very nice of you! I can tell you will never stop being a caregiver to your family. Put that smile on your face as you remember all that have passed and the ones that surround her now on her Journey! HUGS! Keep those memories of her fresh in your mind as you share thoughts tomorrow of the things you enjoyed and how much others enjoyed her! Then you will see why she is missed by so many that have been touched with her smiles!
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Continueing my exercises has paid off big time in the last few months I am seeing BIG results. About 4 months ago I mentioned I had a big brag that I could get up from the center of the floor rather than climp up the chair or someones leg! That was a big step in my independence of going to stores alone. I had a big fear of falling and not being able to get up and having to crawl to a wall or post to get up.
Well now my big brags that have come after a few more months of doing exercises and working those areas that needed help. I have been concentrating on areas that rehab has missed. I think I told you that I felt my ads and back and hips were the weak areas to come back slowly. Well this week I had a big break thru and am seeing signs that they are getting stronger. I am able to stand and talk longer and stand in line at the stores or just walk around and look at things. Before I had to skip that and just rush in and get what I needed and get back home before I was too tired. After several medical exams on the doctors table I needed help to sit up. Abs just would not get any stronger. They finally have responded and twice now I have been on the doctors table and been able to sit right up without a single grunt or any help! After two years I am still seeing big improvements to my getting better. You just have to be patient and work toward those goals slowly.
I have found you just can not give up you have to keep trying! 😀
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You might not like either one of these but think about if they are able to contact or network with other doctors that are familar with your illness. I know the Mayo does network on rarer stuff. My Doctors were not able to give PP but they networked with a larger hospital out of their group and sent me there after the IVIG did not work. I think that was partly because of my Neuro was not afraid to admit he was not as familar as this other Doctor was and he was in constant touch with him from the beginning. Takes a special Doctor to admit he is not familar. I was impressed with my team from the beginning they were quick and started right away to rule out diseases with tests. You were not able to find a liason in your area that might know of someone that attended either of these hosiptals? Next be sure they accept your health insurance. Find out if your insurance would cover your visits if you were to look for a second opinion. If you are able to aford to pay for one yourself it might be worth it to see both.
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I am glad to see from the poll that we are part of a very possitive group. Attitude means alot to other forum members and also to our caregivers. I wish that everyone could be possitive but depending on how long you have had CIDP that does bring your vote down to a different level too. Also depending on what residuals this illness has challenged you with and if you are able to get medications and the IVIG treatments to give you some relief. Everyone of you are very important in my progress. I am glad to know the very possitive people on this forum and get the knowledge that the ones that might of voted no on the poll to continue to share their knowledge with us because together we make a great family that is willing to share their personal views and experiences! ~Happy Holidays Everyone~! 🙂
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I am glad you found this forum it will really help take the worry out of your stressful life knowing you are not the only one with these problems. The main thing is to keep the communication open between you and your doctor and share some of the ideas that others have had sucess with. The only thing I would add is that you make sure you get plenty of rest and don’t over do it that only makes things worse for all of us. Welcome to your new online family. Also contact the foundation and see if there are any local chapters in your area you can contact. Even if it is a liason in a near by state they can be a very big help too. Welcome and Happy Holidays!
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Loretta sounds like your nephew has a severe case of GBS, like I did. They started me out on the IVIG and the team felt after 5 treatments they were not getting the response they wanted. They transferred me to another hospital for the Plasma Phresis treatments (5). They got the results they wanted from that process, but it takes time for the GBS to run its course on recovery and that is very slow. It is a very good sign your nephew is getting movement back. Once he gets out of the ICU he will go to another level of care to make his breathing on his own recover and start building up the lists of things he is able to do before he is put into rehab unit. While in a unit where they care of him while he is using the trache he will work carefully with Occupational Therapy and Physical Therapy and learn to regain all the functions just like a toddler does. Learning to lift one finger, then maybe that whole hand and then be able to bend that arm at the elbow. Once that happends in the legs and arms then they will help hm learn to drink out of a sippy cup, comb his hair, wash his face, change the tv remote. He might have 4 or 5 brags in one day of what he can do. Keep his recovery possitive and make a big deal of his progress. Some days might be too much for his system and he might be tired the next day. He and the staff will learn to listen to his body and how much is too much. Then they will get him to roll over and sit on the edge of the bed. Any step is such a big deal when you can see you are regaining functions and are getting closer to healing. All he wants to see is to have his independance back and patience is not in his vocabulary right now. You will see alot of frustration from the fatigue and he does need his REST right now. Don’t be surprised if he wants to sleep 20 out of 24 hours. With the damage to the sheath of the nervers his body is wasting more energy out thru that part of the body than what he is using. Just listening to family, nurses, aids and the doctors ask you the same questions several times a day is very exhausting to the GBS person. I went to the rehab floor only after I could walk over 10 steps before they would take me as a patient. But there was alot to learn on that intermediate level while the body regained not only the strenght to breath on its own but maintain high oxygen levels. I am sure you have already read on this forum that GBS stands also for [B]G[/B]etting [B]B[/B]etter [B]S[/B]lowly and not only for Guillain Barre Syndrome. Have they said anything about him having any of the variants beside GBS? It is very scarey when a love one goes on life support. You will find some people here that did not need that much care and others that will not be as fortunate as your nephew. Just keep reminding him that everyone is different and he will get better it just takes time. I had to spend my holidays in the hospital and I hope that your family does not have to do that this year. But if you do make sure you bring in all his Get Well cards and Christmas cards and there is someone there to read them to him. My husband did that for me and also friends brought me in a few things I could decorate my room with while I was in there for 9 weeks. I had a holiday tree and a Angel Tree Topper that was bigger than the holiday tree. Girl Scouts visited one day and sang Christmas Caroles. And on Christmas Eve day a man brought in his Chocolate Labrador Retriever (Registered Therapy Dog) to visit. Children up on the childrens unit made people in my unit Christmas Cards to read. I have very special memories of that Christmas! It was not as bad as I thought it would be! I guess it is what your attitude is. I guess I made the best of it during the holidays. Let us know how your famiy are doing and the progress that your nephew is making! BIG HUGS TO YOU ALL! Happy Holidays! 🙂
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caryn I can understand why your heart is so heavy! You have several very good reasons and don’t in any way have to appologize to any of us because you need to lean on us! If you need a phone call please let us know. I am sharing that COLD Canadian air with you this week and will be in the house alot. Liz can tell you that her and I have leaned on each other a few times and it does help!
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Hello Everyone!
Oh the silly things we worry about and try! Atleast, I filled in the gaps with Humming! My hubby called me “hummingbird” after GBS I am sure that did not give the vocal cords a rest either. Also, in addition to what someone said about the vocal cords being control by the nerves and muscles, so is the diaphram and without that being strong enough to push the air it is hard to talk. I still now my diaphram is not strong as it was before because it gets out of control and the two muscles work against each other instead of together and I get hickup VERY OFTEN. I get them and I just laugh at them like a little kid. I can remember yawning 300 times right as I was ready to go to sleep. My jaw would be so sore from yawning. I would fall asleep with my jaw aching like it might after chewing bubble bum for a long time. I am sure I would be very good at playing the Kazoo with all this humming I do! Now it is just not from not knowing the words to the songs! So hum away your worries! Have a GREAT day!
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At first I thought it was because my lung had colapsed, but found out it was not because of that but, the strenght. For two years I have done breathing exercises and first my telephone voice I could see I was able to complete sentences. Then later I could see that I was getting stronger by just talking for a longer and longer time without going hoarse. Now I am able to sing some songs. Mostly the slower songs. I tried while I was in the hospital to sing Christmas Caroles to myself on Christmas day but was not able to finish a line. Now I am able to finish a verse. I am also able to whistle for a bit longer and whistle to a song for the parrot. This poor parrot has had his life change. He learned to hic up because I got them many times during the day! Then he would whistle with me and help me finish the jingle, long after I was done. Most important is not to use your voice to the point it sounds strained and do breathing exercises to increase your lung capacity. It does take some time but gets you back to singing in the shower again. :rolleyes:
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I have the exact opposite problem I can not use the higher seats because of the lenght of my legs. I had a terrible problem at the hospital with the higher seats and now when I come to a restroom with them in a store I have to go to another stall or store. I wonder if in other countries their are other standard size toilets? I agree there should be a standard size for a stall, so you don’t have to straddle the toilet to get the door shut. But those kind are good if you are not able to lock the door on the stall. You can just hold it shut with your knees! 😮 I have seen ramps there were so steep that a person trying to go up them with no strenght could not make it and others that had the strenght had troubles too and actually have seen a few people tilt backwards on them trying hard to get up them. Now when I am at that place and see someone in a WC I ask if they want help. Pushing them up actually helps me climb up the ramp! Wonder where the standards are for these things?
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Blue Man Group!! I love to watch them. I would not want to sit too close! LOL 😮 You can tell Kevin that there are many more here that care and just are able to read the posts but not able to respond or someone has already said what they wanted to say! But that does not mean that we do not care any less! Hugs! (((((Kevin))))) :p 😉 😀
Oh I got this message, I over did it for Kevin. Good thing there are ways to keep someone like me from overing doing it for a child!
“You have included 5 images in your message. You are limited to using 4 images so please go back and correct the problem and then continue again.”
OK I took out the others that were COOL too! LOL
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I am going to watch this thread with more than just some interest. I had a severe case of GBS and now having female problems that have been on going. I am starting to forget about the GBS and get back into going to the doctors for other problems. The trouble with my body is that it is not producing testosterone and the estrogen is causing problems. So to try and control some of these problems until I can have the big H operation they have been giving me 10 days of testosterone to regulate or stop bleeding. So with that said the last time I took the testosterone I made sure I was more observant and kept track of how I also felt. Attitude, energy come up and the GBS residuals went to a minuium. Now you have me wondering if it is not the GBS getting better slowly it is the testosterone they are giving me that is giving me good days! ??? :confused: ??? Interesting eh?
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Oh I must not have mentioned I don’t write poems and only type long messages on this forum! I stopped saying I was sorry for a long post shortly after I joined the forum.
I was one of the lucky ones my eyes were paralized WIDE OPEN! I was able to tell if it was day or night. I could look out my window to see if it was a sunny day or cloudy. All I could see was the sky! I was excited because I was on the eleventh floor with a penthouse view! I was minutes from downtown and the three rivers were below me. I was minutes from the stadium but had to setting for watching the football games on the tv. I had double vision so I mainly listened to them talk about the weather at the stadium and watch for snow flurries to start outside my window. I could not read either. So sensetive to a breeze I could tell when someone walked past the foot of my bed the breeze woke me up! It was a game we played to see if they could sneak into my room without waking the “Princess”! Very seldom happened! You will find that we will remember things from time to time and post them and then that reminds others they had the same thing. Everyone’s recovery is different by the degree and the time frame. You just have to be patient to see what residuals that GBS leave your body to remember it by. Yep this is what I looked like for many weeks! 😮 I did not even recognize myself in the mirror. People would come in and look at me and raise their eye browls. I wanted to think of a joke about that but still have not found one that reminds them of how stupid that looked to me! But I understand it! I would have hated to see what they did if they thought I was in pain!! 😮 See what I mean about the long posts! BTW I am able to type over 100 wpm but the GBS did not help the spelling errors!
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Christine I am glad you left a message on our boards. We all count those days and weeks in ICU. Some cases it took longer to be diagnosed with GBS. Some it takes a little longer for the team of Doctors to come up with the treatment they are going to use. IVIG did not work for me and I went on life support for a few days and was given a trache for the rest of my stay in the hospital. The Plasmaphresis was then given. A total of 9 weeks. I went from being told in the ER that I had MS to being able to walk into my home 9 weeks later. The walk was not strong and was not a record breaker as far as distance. It was done by using a walker from the car to the steps and them a very slow climb using the railing up two short flights of stairs with a long break inbetween. I was told to keep trying and that is what I am telling your family to be very possitive and keep trying to educate the staff and themselves as caregivers. I am back to driving and shopping on good days. I still sleep 10 to 12 hours a day. I am still in rehab and an exercise program to strenghten, stretch and get my staminia back. My feet and hands are still numb, I never was on any pain meds, but many of my buddies here have been. It has been a few days shy of two years and I am still getting better! I agree that you should depend on what the neuro and the rehab doctor says, but then use your judgement too. Ask questions. Ask them to explain what tests were given to determine their dx. I can tell you that at 11 weeks I still needed alot of help doing everything. I had to use equipment to help me do everything. Get in bed, get out of bed. Pick up clothes and pull up clothes. Sponges baths were still a hassel and I had to use the transfer chair for the tubs. The nurse come several times a week for a month and after that Occupational Therapy and Physical Therapy come two or three times a week for months till I could get a ride or drive myself to the facility only a few miles from my house. I was lucky I was able to stay in the same hospital building for the last 8 weeks. First week that hospital was not able to give me the PP so I was transferred to a larger hospital. After 3 weeks in their ICU I was transferred to a different floor that was rented by a nursing home type company. Everyone on that floor has Respiratory problems and were on traches. There I got very good care but they worked me in Rehab more than most of the elderly patients on that floor that had no hope. They did OT and PT with me Monday thru Friday as my GBS started to reverse itself. They had the Speech Therapist work with me and swallowing. I still remained on the feeding tube for another month. But learned to eat pretty well on my own. Each day I had 4 or 5 small brags to show my husband what we discovered I could do. Even if it was to wiggle a finger or raise a hand it was a big brag to me and an awesome big deal to my caregivers to watch me getting better each day. The day I could hold the telephone receiver myself! My hand got strong enough to use the call button to summons a nurse. *I wanted to just call them sometimes to prove to myself I could still do it, but I knew they were busy!* I could change the tv channel myself. I could even use my sippy cup myself. That one was a biggie too! Oh and once I got the valve on my trache so I could talk. I never stopped. If they wanted to take it off at night and put me on more oxygen I gave them “THE LOOK” They ofcourse ignored it but knew I did not like to be silenced. In a few weeks on that floor (3 weeks I think) I took the test to see if I was able to be moved back into the hospital to their rehab floor for some real and I passed! I could walk with the walker frame the required ten steps! I wanted to go home for the holidays but did not make it but I walked down the hall from my wheel chair toward the elevator doors. First attempt was 24 steps! I sat back down because I knew I was one step closer to going home. Then on my second attempt I did 30 steps! I sat back down in the wheel chair and grinned ear to ear! I had even done more than they required but was not dumb enough to do more and take a chance of falling and having to go downstairs for x rays on an arm or my chin. I rested that next weekend and was moved to the rehab floor with the gym and machines and a team of people that pushed me just enough to get me home but did not push me too much that I had no function the next day. I did have some residuals like swelling happen and a fall that injured my shoulder, but even those things did not stop them from getting me home in a few more weeks. For Christmas Eve I got to show my husband my big brag that would make his Christmas better! I had the two male nurses stand on either side of me as I sat up on the edge of the bed and walk a few steps over to the chair. Once there and seated I looked him square in the eye and said Merry Christmas! So don’t let them tell your family member that he is not going to be able to do this or that. It is too early in his recovery to even tell. Tell him he will get better slowly, but he will get better! I am not going to lie to you as one of his caregivers it is going to be a challenge for the family to take care of him for months after he is home but once you get home things like REST come easier! He MUST get plenty of REST! The covering to the nerves heal at a very slow rate. That recovery takes months and years. He will have to be patient! Do too much too soon and it will set you back a few days so your body can recover. He will have to learn to listen to his body and you will have to learn to listen to him. There is no fast ticket in this recovery. Now he can measure his recovery from day to day…..later it will be harder and you will see progress week by week or month by month. Keeping a Journal for him and then letting him continue to keep the Journal going is the better way to see progress….step by step!
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After I come home after nine weeks in the hospital, i slept 20 hrs/day too! You don’t get any rest in a hospital. There is always someone in the hall rolling carts up and down the hall. Nurses coming in to give medication every few hours and aides coming in to take your vitals. Respritory sending in someone to chech the oxygen levels and if you need suction or anything. Meals and snacks are passed out all day long. Magazines, prayers, friendship circle volunteers and the cleaning people. The guy that comes in to check for any machines that are being rented on your floor. People that need a payment for the tv or someone that come to help you fill out your menu for the next day. Not to mention all the bells, whistles and hornes that go off for various reasons all day and night long. Telephones ringing at the nurses station. Laughter in the hall. Someone dropping a bed pan or another patient calling for the nurse! People from the laundry bringing up clean sheets and Doctors saying Hello to each other as they pass in the halls. Shift changes are noisy as they up date each other for each patient! 24/7 it gets old after the first night of no sleep! Did I mention the occasional fire drill with the doors all slamming shut or the non stop ambulances arriving at the emergency room? If your lucky enough to be on the other side of the building from the helicopter pad you hear them circling around the building just to make sure everyone is awake! Oh I think I forgot to mention the bell on the elevator as it gets to your floor and the people that think they are “quietly” running down the staircase! The alarm on the IV bag that is either done or stopped dripping. The intercom that is used to call a nurse or doctor to a certain room. The different ring tones to all the cell phones that are not to be used in that floor of the hospital. City traffic and the back up warning on the garabage truck. The trains that blow their whistles for each railroad crossing thru the town. The tug boats that signaled each river boats that passed. I thought they used radios? Well while in the hospital I was lucky enough that they were remodeling the whole floor above me and sounded like huge termites all day long drilling thru the walls. The only time I had total silence was when I was finally able to sit in my bed that folded into a high chair. I was eating carrots and peas and was eager to push them into my mouth. Enjoying the fact that I could now do that by myself. Listening to the tv. I tried to move the tray on the table and off it went off the edge. My uncoordinated reflexes slammed my arm down across the tray to stop it from going off the table. Like a see saw that move made the heavy charger plate and my heavy resturant style plate go sailing. GONE was the pease and quiet. Now in the hall I could hear the whole floor go into search mode for what made that noise. I was not able to talk so I just sat there till someone passed my door as I waved for clean up! Everyone charged into my room and started to clean up the carrots and peas. Jokes and laughter replaced the silence. Boy do I appreciate my quiet home now! Dogs barking and traffic and kids yelling. I can sleep thru it all now! Not even the telephone can wake me up! When I get tired my eye lid still is the first tell tale sign that I am getting really tired! I am sure in the hospital they have told your Dad that if he wants to sleep he should have went to a hotel! 😮 Give him a hug from us all! HE DESERVES IT!
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I am sorry for not being here more, computer problems and other things have kept me away! I agree that stretching is an easy workout along with the breathing exercises. This is a good way to wake up your body while you decide whether to go back to bed or not! LOL Just kidding! I like combinding my different tapes to make up my own routine. Yoga and Tai Chi and Chi gong and a few of the ther marticial arts. I use my Jane Fonda step for some of my stretches. One is put my heal up on the step at a low height and bend toward or reach toward my toes. Don’t try this until your balance is good which required that you get your muscles in your legs stronger to achieve good balance. It all works together to be fit! I have worked on my body from head to toe to make sure that every muscle, tendon and ligament is stretched and that I don’t forget them and let them tighten back up! When I come out of the hospital I could not make an “L” with my thumb and pointer finger! Now with working on all different movements and the sign language chart I am able to form all the letters now. Just today I noticed one finger on my left hand is not very strong so it now has its own exercise routine. I am getting better! Part by part! I was completely paralized so everything was not very strong when things started to reverse. I have some crazy exercises to do in bed, sitting, standing, swimming and even crawling. When did I become a toddler again? Maybe I will get some toys for Christmas. Santa I want a treadmill! I promise that I will not use it for a clothes rack! There is so many things that I still can not do and OT and PT was never enough for me! They skipped areas that I told them I needed to be able to use. My insurance only pays for 20 visits a year! That is why I joined a Fitness Club that has a pool and all kinds of machines. I use that to work out every slow, stiff and weak area. I continue to work the ones that are doing good and encourage the ones that are putting up a fight to get with it or the next move is boot camp! Keep up the great work it is well worth the little effort each day! If you feel pain remember to stop immediately. Our type of exercise should not continue till we feel the burn! If you have to stop for a few days or weeks due to illness, don’t be ashamed to go back to a beginner level to protect yourself from injury! Remember to warm up and cool down. That part of your routine is a must!
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Linda how are you doing with that new toy? How long did it take to get used to having all those tiny muscles working? Your approached worked a bunch all at one time. It is sad that they give us these things and let us go. They should have started you out slowly just like you were starting to work your whole body. I hope you are still using that toy. Have you got a picture of it or a name? Also, it is hard to figure out if you are getting a work out or not the first time. We get so happy that we can do something or we get so obsessed with something that is easy to do that we over do it the first few times. Was this the circle with the bands or mesh squares and you put your fingers thru it and try to open them and close your hands? I liked that one, my OT called it a spider web. I used it and enjoyed doing it during tv commercials. It was on the coffee table so I could pick it up several times a day. Yep I paid for it with over worked fingers but they got better quickly and slowly got stronger! Remember every little bit helps! Keep up the great work!
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Thank you for the heads up. I see that The Insider is on here this evening on CBS at 7:30 PM so maybe that is the same one you seen.
In 1983 Andy Griffith was stricken with Guillain-Barre Syndrome, couldn’t walk for 7 months but he recovered after rehabilitation.
In 1986 he produced and starred in the very successful TV series “Matlock”.
When I got GBS in 2005 the staff of the hospital told me about him and I knew he had gotten better. That information gave me hope. After arriving home and finding this forum I noticed he was an Honorary Member of the Board. I am glad he got this appearance on The Insider to spread the word about GBS. I also was glad they gave him the time to mention the residuals and the pain and that he is also dependant on a wheelchair to keep some independence in his life. Most Doctors don’t know about the residuals and pain. They just tell you that you will get better! We know you [B]G[/B]et [B]B[/B]etter [B]S[/B]lowly and there are residuals like the fatigue. 😀
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hombobbe> When I was in the hospital and also in out patient rehab they used ultrasound on me. I did not notice any difference but that is not to say it might help someone else. I think the best thing is rest and keep the feet elevated. If the swelling is in the lymph system like mine the fluids are not being moved thru that system. The muscles get weak and because we are not as active as before the fluid just settles in certain areas. I actually have gone to a specialist and had my feet and legs wrapped. After months of being consistant and having massage done for that purpose I have seen results. There is also garments that the specialist can order to keep pressure on those areas. She also gave me exercises to do at home and showed me how to do home massage to move the fluids out of those areas. I have not found anything else that has worked. Once weight has been dropped and activity levels come up and diet is worked into the program, I have seen results. But again it is slow process and you have to be consistant and patient. Be Well!
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Liz> I am sorry to hear about your Mom. We had talked about this before, and I knew you were concerned. Don’t dwell on the unknown but think how much quality time you gave her. That care you gave her allowed her to stay in her home for a longer period of time. You put your life on hold to do things for her. Take care of yourself and things will work out. She needs time to heal and I am sure she will need rehab too. We all know how much hard work that will be and very hard for you to sit back and watch her struggle. Think of this as a break for you to charge your battery and be there for her when she returns. Now we all need you to be careful and stay safe. I hope someone will come check on you each day like you have done for your Mom. You both are in my thoughts and prayers! If you want to chat just let me know and I will call you, we have not done that for awhile. 😮
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Jason you are doing a great job in keeping Natacha’s legacy alive by leaving a post here for all to read. That is going to help others heal in my ways from their losses. Whether it is a life or the quality of life that GBS has taken away from us your memory of your Sister and what your family has gone thru could help many others. Please contact your local chapter to see if there is something you can help them with. Also even contacting a local Grievence Council might be a place where you can also talk to people that have just experieced a heavy loss like your family did! I am glad you posted and woke me up again to remind me that we all can give back and help those who could use our strenght and knowledge while they are trying to deal with this sudden change to their lives. Also, [B]thank you[/B] for making a difference in our freedom so that we can freely move around to help others!
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I am pretty good except for paralysis from knees down and dropfoot in both feet and big time fatigue Think I will just sit it out, what the heck I am 68, have a power chair to get around in . Thank you for listening and say a prayer for me. THanks Regina
Regina we all know how frustrating it can be. Your right you have the power chair to move you safely about. I see people in those all the time. You know your body and situation, knowing when you are comfortable and uncomfortable. I hope that you have help shopping and going out to the movies and borrowing a book from the Library. Here we have a few companies that are equiped to pick up people that qualify for transportation. They have vans that are equiped to pick up people in wheelchairs and the power chairs. I know because I see them being dropped off at the curb to do their shopping or visit the doctors office. The fatigue is the thing that takes a good plan to pace yourself each day. It is amazing what can tire you out one day that lifts up your energy level the next day. I found that a telephone call can turn my day upside down one day and the next make me want to clean the whole house. I just go with it and pace myself. Nap when needed. I don’t worry what people think when they call and catch me napping. I work hard to get a good nights sleep, that starts my day off better in the morning. What you eat does matter. Exercise is customized to my needs. Breathing, stretching and range of motion maintains what I still have. Communication with your Doctors is important and just a reminder that you have already had that test and the results are in your records will open up those lines of communication, leaving you open lines for communication. Don’t give up on them, if you do need IVIG at some point you don’t have to repeat test then you have kept in touch with your team of Doctors. It you have pain you have someone to contact to start finding what meds will help you. From what I have been reading CIDP is always changing residuals that need to be addressed. Your number one priority is you not worrying how the doctor or their staff has to keep taking your calls and looking for new way to keep you as comfortable as they can with up to date methods. I am lucky enough to have a team of doctors that have been in contact with other hospitals and specialists for information and suggestions on how to treat myself. We all know it can be frustrating but you deserve the best care they are able to find for your case. There is a gentleman that lives a few miles away that had GBS for 15 years and he goes to rehab and lives in his wheelchair everyday. He works from his home. He is still trying to find what works for his situation. He has not given up and neither should you! Make sure you come here to vent and check what others are doing. I have found a few suggestions on here that other doctors have suggested and had sucess with and I passed that information on to my doctors to do more research on for other patients. It is a group effort and you are not alone! You have come a long way to work this out. Your suggestions, examples how you have made changes to get on with your life are amazing and will help others!
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I am pretty good except for paralysis from knees down and dropfoot in both feet and big time fatigue Think I will just sit it out, what the heck I am 68, have a power chair to get around in . Thank you for listening and say a prayer for me. THanks Regina
Regina we all know how frustrating it can be. Your right you have the power chair to move you safely about. I see people in those all the time. You know your body and situation, knowing when you are comfortable and uncomfortable. I hope that you have help shopping and going out to the movies and borrowing a book from the Library. Here we have a few companies that are equiped to pick up people that qualify for transportation. They have vans that are equiped to pick up people in wheelchairs and the power chairs. I know because I see them being dropped off at the curb to do their shopping or visit the doctors office. The fatigue is the thing that takes a good plan to pace yourself each day. It is amazing what can tire you out one day that lifts up your energy level the next day. I found that a telephone call can turn my day upside down one day and the next make me want to clean the whole house. I just go with it and pace myself. Nap when needed. I don’t worry what people think when they call and catch me napping. I work hard to get a good nights sleep, that starts my day off better in the morning. What you eat does matter. Exercise is customized to my needs. Breathing, stretching and range of motion maintains what I still have. Communication with your Doctors is important and just a reminder that you have already had that test and the results are in your records will open up those lines of communication, leaving you open lines for communication. Don’t give up on them, if you do need IVIG at some point you don’t have to repeat test then you have kept in touch with your team of Doctors. It you have pain you have someone to contact to start finding what meds will help you. From what I have been reading CIDP is always changing residuals that need to be addressed. Your number one priority is you not worrying how the doctor or their staff has to keep taking your calls and looking for new way to keep you as comfortable as they can with up to date methods. I am lucky enough to have a team of doctors that have been in contact with other hospitals and specialists for information and suggestions on how to treat myself. We all know it can be frustrating but you deserve the best care they are able to find for your case. There is a gentleman that lives a few miles away that had GBS for 15 years and he goes to rehab and lives in his wheelchair everyday. He works from his home. He is still trying to find what works for his situation. He has not given up and neither should you! Make sure you come here to vent and check what others are doing. I have found a few suggestions on here that other doctors have suggested and had sucess with and I passed that information on to my doctors to do more research on for other patients. It is a group effort and you are not alone! You have come a long way to work this out. Your suggestions, examples how you have made changes to get on with your life are amazing and will help others!
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Linda you are not alone here! You can vent all you want. Just look at the stats…..many read your post and few reply! I know it is not from them not caring. I realized it is because most don’t have the energy to reply. Most are worse off than you and would trade you shoes! Trying to find the right meds and the correct dose is frustrating. We all know that, but we celebrate those few days a month when we are not dealing with our worries and frustrations. I desire to become the wonderful person that my dog thinks I am is a full time job for me! Live up to those goals! Lighten up on your work load and know that your family know you would if you could. Set your priorities and chip away at that list. Sounds like your still taking care of others too! Yes, they say take care of yourself and they mean it! WE DO TOO! This time of the year with the lenght of the Northeastern days getting shorter and the increase of cloudy days does not help! When you are just sitting there thinking of what you need to be doing. Take time out to think about what you would like to be doing. I look at Ken’s photos he posts and I check out travel packages around the world. I think of a resturant I want to go to and plan a menu at home that compares! I might go to a site and read a few jokes. I try and remember them to tell others. It helps me to laugh! Don’t let life get you down! Let it life you up! Take a load off and follow your dreams. Our minds are going faster than our bodies are able so let us know where your Journey takes you! I suggest some of the other posts on this board is a great help too! See the bright side and the light side too! I am thinking of you! HUGS! I know that most of the people here are more private than you realize. I have stuff going on and I don’t put it in print. I don’t have the energy to post to each message. But you can be sure we all care or we would not be here looking for answers. Your post has ruffled a few feathers from friends. The others are seeking the same things you are. You are not alone! Remember that! Journal…come up with one word that is possitive and decribes your mood or day or the way you feel. Write it on a calendar. Do it in the morning on how you feel and in the evening the way your day went. Today is a chilly morning so I got up and dug into the blanket on the couch by the end of the day I will warm up and the chill will not be there….I see it as my day has gotten better! It is your choice to see the glass half full or half empty as they say! I like to see that someone has gone grocery shopping and saved me the trip for today! Turn on some bright lights and look in the mirror and say “Good Morning Sunshine!” Do you have a favorite song that will bring you out of your troubles? I will tell you mine if you tell me yours. I am sure there are others that have favorite songs too! Hang in there and just don’t smile! LAUGH! Laughter is the best medicine as they say! 😀
Hello everyone
Hi friends,
This is my first posting to this discussion board so I don’t really know exactly what I am doing. Nevertheless, I’ll give it a try because I would really love to find someone else with the same thing as I have recently been diagnosed with: IgM MGUS. I drew the short straw in the statistic of 1 out of 5 with MGUS having peripheral neuropathy, which was the reason I went to see the doctor in the first place. After about a year of blood tests and EGM tests, etc. they narrowed it down to IgM MGUS.
I can still walk (albeit a bit awkwardly), but I had to give up running. It is in both my feet and hands now.
The hospital has prescribed Rituxan and Roche has agreed to lower the cost a bit. However, Mr Roche will still be able to afford a fine new car after a couple of series of injections. They are quoting about $16,000 less 10% for a one month series of four injections.
First though, the hospital took a blood sample today for the Antimag test (anti-myelin-associated glycoprotein). The results should be available in 3-4 weeks.
I have spoken to the Mayo clinic about a trial they have specifically for this. Surprisingly there are only 6 members in the trial. (I thought these trials were with hundreds of people). There is another trial underway in France, but that is not quite so easy for me to get to (I live in Canada).
I’ve done a lot of research into all of this stuff, along the way thinking I had CIDP or Charcot-Marie Tooth, etc. Other worse self-inflicted diagnoses have guaranteed more than one night without sleep.
The Mayo clinic mentioned people with various stages of neuropathy damage, and I am wondering how bad this can get. At this stage, I have to hold on to the wall when I close my eyes in the shower so as not to fall over. And I am not too good on the roof anymore cleaning the gutters. I fell with a chainsaw in my hand a few weeks ago so my wife stays clear of me when I am cutting wood now. Also, no more water skiing and I almost killed myself trying to skate backwards last winter on the ice.
So….if anyone out there has IgM MGUS, it would be great to share stories and learn as we go.
Good luck to all.
Andrew
Hello Everyone!
I remember being told about that when I come down with GBS. I also noticed he is an Honorary Member of the GBS Foundation that. An article that I had read said he had to take time off (two years) from working, to recover from GBS. There has been several VIP that have had GBS. Recently there is a college basketball coach that is in a wheelchair that coaches in either North or South Carolina. A polititian from Ohio that could not continue her campaign to be re elected. Just like on our message boards their cases were very different from each other just like the ones here. They are also are now thinking that it was not Polio that Franklin Delano Roosevelt had, but it was GBS. Small world! :rolleyes:
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OH you had a rude awakening but you have given me night mares! I don’t like spiders and snakes! I seen 2 snakes this Summer. Hubby has been on meds now for 30 days for a bee sting he received while working in the yard. That has been a nightmare. The neighbor just come over and sprayed the nest in the ground for us. I enjoyed this Summer! Just because I was able to do more in the yard this year. I am looking forward to doing more this Fall than I was able to last year! Enjoy the Seasons! Kill the spiders! 😮 I bet Liz has a Halloween pic for Halloween with a spider in it.
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Julie you wrote a chapter from my life. I don’t think there is anything left for me to add. I thought while reading this that your story was extreme, but then I could feel myself relating to most of the feelings. I can see where things with my personality have changed, some that you mention I am too stubborn to admit but the truth is still there. I don’t think you mentioned that you had become bossey? From spending so much time asking for things that I need when I seen a person, I bark out things I want them to do. Things that I request are stupid, but just putting the sweeper away seems to finish that job and give me a sense of being needed. Even if I was too exhausted to put the sweeper away. Most jobs take both of us to complete it these days. I can go to the store and buy the groceries, bring them home but then I am so exhausted to put them away. I can only concentrate and cook for short periods of time. If I take on a cooking project that needs alot of attention, I find myself too tired to enjoy eating. I am exhausted and don’t have the energy to clean up the kitchen. I am lucky my husband will do the dishes but the next day I am cleaning up the kitchen. That lack of concentration is not helpful when doing laundry either. I wash a load one day and the next I remember it is in the washing machine. I can walk past the dogs water bowl and see it is empty, but until the dog picks it up and brings it to me, it does not occur to me to fill it up with water. Same with my plants. I see they are wilting but it does not occur to me I am in charge of if they live or die. Not good when you are sitting on the patio looking at the containers with wilting plants, wondering why the veggies did not get very big this year. I wonder if this goes away the longer you are recovering! Oh will the questions ever come to an end for those who have gone thru this illness? Nice threads that have really made me think! I am always glad to see posts that require everyone to give their opinions. Thanks everyone!
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Ayut hello and welcome to our message boards. If you have GBS it will take awhile measured in years not months to let the damage to the nervse heal. I am glad that you are going to the hospital to do your physical therapy! That will help you to slowly gain strenght, but this is an illness that can not be rushed. The nerves have to heal first before the correct and swift signals will get to the muscles. As you continue to do therapy you will be able to do more and more. What you have to remember is [B]NOT to DO TOO MUCH[/B] that is counter productive. The nerves need REST to heal and the muscles need to exercise but this is not aerobic exercise it is very consistant slow movement like Yoga where you move for range of motion, balance and breathing. You are having residuals because you are probably doing too much each day. You should be eating healthy and if you are doing that with a balanced diet there should be no reason to take any supplements. If you are in pain then others can suggest pain meds that worked for them. I did not take any pain meds. I am [B]slowly getting better[/B] which goes along with the recovery with GBS. Healing is based on the damage that was done and also the rate of healing. Listen to your body and only do as much as you can without residuals flaring up each time you exercise. Also keep in contact with your Doctors that know about this illness. I am sure the beer and wine did not help. 😮 Sorry to say! I am sure if you are patient others will have more helpful advice for you too!
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I read your message and it make me just sit back and take a big deep breath. Life is too short and we all have to stop and smell the roses and enjoy those things around us that we don’t normally think about. We think we can do that later or that person will be around forever. I am glad you decided to take that trip with your Son. I have spent the last two Summers stretching myself to the limit to go watch my Brother enjoy his racing hobby. Some nights I am ok and others I am just drained. You were listening to your body and knew when to rest and it is very frustrating and totally scarey. Especially when you have a child with you. But it was GREAT that you did it! You are building those memories! I think you are smart to meet with your Sister and then go talk to your Mom. If she will not smile for herself and you and your Sister, tell her to atleast gave that smile to your Son to remember. Also remember that if you keep smiling around her it is contageous. I have smiled thru all of what GBS has delivered to me and it is nice that I have lots of people come sit near med at the races. They always make sure to ask me how I am feeling and really seem to mean it just not use it as a greeting. The volunteer to go get me things when they are going toward the parking lot or concession stand. Just saving me those few steps some nights seem to be like throwing me a life ring. I am still getting better and have very few set backs because I have learned my limits. But you have to sometimes extend your energy here and there to reach for something that you would not normally do and that is what you did! Your Son will not remember how tired, slow scared you were. He will remember that you took him there to see something he enjoyed! Thanks for sharing it is a great story to remember when I am feeling like letting life go by. 🙂
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Liz this is where you are not in charge of setting up a routine, your body is in charge. I do what I can when I can. If I have PT or OT then I count that for my exercise for that day. I might so stretches or bends. I work on every time muscle in my hands and feet and then think of what I can do to work and move the arms and shoulders and legs and ankles, knees and hips. If I try and do something during the day and am not able to do it as well as I think I should be able to do it, then I make a note to myself to work on that area. You need to work on your lower body, and upper body and also the core. They all support your posture and skelleton. Abs help the back. Arms assist the shoulders to support your body weight while trying to stand. The legs have to support the weight of the whole body so their strenght has to be reliable. Balance is based on the strenght of all the areas. Work in bed if you can not work on the floor. Lay on your back and move your legs one at a time to the side and back like you are making a snow angel. Lift your legs like you are swimming. Movements should be slow to get maximium benefits. So that makes the exercise more controled but also makes them harder. So you might be able to only do two the first time and the next day only two and the next day six. Sundays I review my progress and only increase my exercise by one more for that week………not trying to do a whole set of 10 reps. When you slowly increase each exercise by one more for that week it does not seem like alot of added work but you add one more to ten different exercises you are adding alot of work. So remember only do as many as you are comfortable doing and slowly build that up. It is not a race or competetion to see how many we can do but to do them correctly and gain strenght slowly as our bodys heals. During Yoga I can do 10 different positions and only do them once to a tape where the girls are doing them 8 times. I am in no rush, I am just glad to be able to do them. Before I was not able to even do them once. Some I am able to do them several times.
Most important is that you are doing things for exercise that you like to do. Keep it interesting! Don’t over do it, relapses are counter productive. Remember if I go to the grocery store or even to a Doctors appointment I don’t do my exercises for that day. I did enough walking to the car and stretching to get into the car and back out! I give myself credit for every movement I am doing and add a few things to that if I feel I have not done enough exercise. I usually can sit on the side of the bed and do bends and reaches to the side to work my core muscles.
One day I notice I could not turn my arm and wrist to get change at the bank drive thru window. So by the next time I drove up to that window I could turn my arm a tiny bit better. Next visit I had to smile, I had even more range of motion in that arm and wrist. Just form taking time to work on it. When I started out lifting weight I used a water bottle half way full. That was a little less than what was in my coffee cup. Now I am able to bring in most of my groceries. I am able to pick up my pots and pans to do more cooking now. I am able to lift a stack of dishes to move them back to the cupboard after doing the dishes.
[B]Slow progress is still progress![/B]
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Sabrina I know it is hard to keep things possitive when someone seems to be fighting you. But remember that without being able to speak it is frustrating. Not seeing being home anytime soon is depressing. Seeing your friends and family having to put so much time into coming to see you struggle each day is a daily effort that drains every ounce of hope things can get better soon. All of you have to take care of yourselves and keep a smile on your faces and that should not be hard when you see him getting better and stronger each visit. Yep it does mean getting better slowly, but that means nothing to someone that is on the inside hoping to get out soon! They want dates they can come home. They want times set that they can expect big changes. They want to be home yesterday! They have no patience. Your job is to keep things possitive and not sweat the small stuff. I had my stitches in the whole time I had my trache. I had a trache fail on me and had to have it replaced because it moved. So don’t be in a big hurry to see those stitches be removed. I did not have the trache removed until I was almost ready to come home. They waited to see how I did with rehab and exercise. You don’t want to have a setback happen and have to have a trache or feeding tube have to be put back in. The next step you should be looking for with the trache is when his oxygen levels are more stable and he is able to breath thru his nose and not have to use the trache as much. Then they will put the speaking valve on the trache and that will give him much deserved freedom of speech! Then you will have to listen to his complaining. There will be times when he will be so frustrated and home sick that he will be nasty. That is stress working on his attitude. Just turn it all around and talk possitive.
As far as the bleeding goes that is common and that why the RT will come in the morning and evening and clean around the trache. Wait till he gets the trache out and for a few days until the opening heals shut. Weird noises will come out of that hole that cracked us all up. I had a habit as I turned in bed to sit up I would hold my breath. Well with that pressure and that opening I made farting sounds from my throat! Good thing they sounded like a duck quacking. Remember and remind him that it can always be worse! I think his progression is really on the right track and as this illness starts to reverse itsself things will start to happen quicker and he will have brags each day to tell you about. They will be litlte brags, but a brag is a brag! Hang in there and let us know if you have any other questions. Remember there is no stupid questions and if it is important to you, it is important to us to give you an answer or suggestion. Keep up the great work of being your Dad’s advocate and looking out for him.
Hello Everyone!
I had shaking at the beginning and it was bad. It zap energy like crazy and effected my eyes and balance really bad if I moved quickly. It was not as bad if I moved slowly it vibrated slowly. If I moved quickly it rattled me and I would get dizzy. It was like every muscle was vibrating to a different rhythm and in different directions. That took many months to go away. It was frustrating and scarey. I kept hoping that this was not how the rest of my life was going to be. It was not. At times now it has completely stopped and until it come back I did not realize it has stopped. I do too much and it gets worse and especially when I am also tired like someone mentioned. I took it as a way to know my body was tired and it helped me listen to my body. But donj’t take anything as “normal” always report those things to your Doctor. We have a tendancy to blame GBS for things that are caused by other things. Things will get better! Stay possitive you have alot of other surprizes to experience with this illness that will keep you posting questions! All are part of the healing process and you should be glad you are seeing changes. Keep a Journal it is easy that way to see how much progress you are making day by day and month by month! Looking back over the fustrating 23 months my Journal is a good reminder of just how far I have come. 🙂
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I had shaking at the beginning and it was bad. It zap energy like crazy and effected my eyes and balance really bad if I moved quickly. It was not as bad if I moved slowly it vibrated slowly. If I moved quickly it rattled me and I would get dizzy. It was like every muscle was vibrating to a different rhythm and in different directions. That took many months to go away. It was frustrating and scarey. I kept hoping that this was not how the rest of my life was going to be. It was not. At times now it has completely stopped and until it come back I did not realize it has stopped. I do too much and it gets worse and especially when I am also tired like someone mentioned. I took it as a way to know my body was tired and it helped me listen to my body. But donj’t take anything as “normal” always report those things to your Doctor. We have a tendancy to blame GBS for things that are caused by other things. Things will get better! Stay possitive you have alot of other surprizes to experience with this illness that will keep you posting questions! All are part of the healing process and you should be glad you are seeing changes.
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Hi and Welcome Rene! I have friends in Watertown. Your in a pretty area of NY state! Wait and some will post. I am not good at CIDP but I think it is too early to dx that. You will find it is easier to dx much later on as things change. I don’t agree with the Docs that I had Miller Fisher Variant but just the other day the one Doc told me I have CIDP because I am not getting better quickly like her other patients. They only had GBS from the waist down and are all doing great! Since I am still healing she says I have the cronic form. According to what I have read I had a severe case (life support) and GBS means [B]g[/B]etting [B]b[/B]etter [B]s[/B]lowly and I am only 23 months into this process. I am glad you are able to post here and share your information with us!
Hello Everyone!
From the information I have the hot flashes or steady hot feeling and sweating is part of the GBS. It happens when the nerves near the spine are attacked. Those are the nerves that control the body’s temperture. I had the window open when it was 16 degrees outdoors and a fan blowing on me. The sheets were still soaked. That fan followed me thru the rest of a 9 week stay in the hospital. I am past having my periods, but I had some break thru bleeding (flooding) while in ICU that lasted for 3 weeks. Since I have been home I have had a terrible time with flooding for weeks at a time. I am dealing with the GBS fatigue and also the fatigue from the bleeding. I have had a D&C and now I have bled most of September except for 4 days here and 3 days there. I have had 3 Ultra sounds during the past 24 months. I am hoping they get this under control soon! I am also still mostly numb in that area so knowing when something is different or going on is not easy. So hang in there and get well. The female body is complex! Again listen to your body! 🙂
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I was told by my neurologist early in my illness that I had GBS and I should tell my Son that he should be aware that genetically it sets him up for any of the Autoimmune Diseases. I have not mentioned it to him yet, but his Dad is aware of it! My family has alot of different kinds of Arthrtsis. It is my Mom how has the Parkinsons. Also there is a Cousin on my Dad’s side of the family that just died that has Parkinsons. I also have a patch of skin near my eye that is probably Eczema, which was on Jerimy’s list of Autoimmune Diseases.
Frustrating news to hear when we are all struggling with GBS/CIDP already. 😮
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I was lucky I was transferred to a larger hospital that had the PP treatment that I needed and then after I was let go from ICU and all those steps I went to a floor in the same hospital that was not owned by the hospital that took care of people that had traches. There they gave me OT and PT to make sure I was able to do the important things like roll over, sit and stand. I had to be able to feed myself and wash my face because the feeding myself process was not pretty! Comb my hair and brush my teeth. There they weaned me off the trache but did not remove it or the feeding tube yet. They made sure all my systems started to come back and were functioning normally and that my swallowing continued to get stronger. It was very hard for me to chew my soft food without falling asleep in the middle of the meal. I would be exhausted. I made progress each day and finally got to be tested to see if I could take a few steps. They told me that 3 steps were required to go to the rehab floor. They got me doing that many and my hope through the holidays were up. Then they increased that goal to 10 steps to get transferred. I was so upset with them I could have walked or hi jacked a wheel chair right to the lobby and called myself a taxi! So they gave me a few more days and tested me again not in my room but gave me the whole hallway to prove I could walk those 10 steps! I was determined that day! They transferred me from the wheelchair to the walker/frame to stand and then said they would count! Scared? Nope! PETRIFIED! I remember hearing each step be counted off out loud. one..two..three..eight..nine..ten..you can keep going if you feel you want to…..twenty..twentyone..twentytwo..twentythree..twentyfour..I told them I was not going for a record and wanted to sit down to rest. I had done my tens steps under the watchful eye and support of my Dream Team and then every nurse, aid and staff member that was on that floor come to help me celebrate. I heard a few praise me and congratulate me and as I rested I tried not to break down with all the emotions I was feeling. I knew I would not be home for Christmas but I would be able to return home soon! I just had to get to the next level of rehab in the gym! I had no idea what that meant! I was ready for anything that day! After I rested I walked another 30 steps and the floor broke out in cheering and laughing and crying! I was ready to head for the elevators! Again, I was not ready to break any records but did not want to have them up the goal again for getting into the rehab floor. They were trying to determine if I should go into an other facility that was more of a convalasant home then rehab or another facility that was well known in the area for their long term rehab program. That next week I was moved to intense rehab in the same hospital. It was very hard, but now more than ever tasting my freedom and independance from that hospital I was READY! I had to be able to do 6 steps, get into a tub since I did not have a walk in shower. I had to be able to walk twice the distance of my house which was 80 feet. So I could walk to the bathroom and back to the bed or couch. They had to see what my abilities were so they knew what kind of equipment to send home with me to make my life easier. Slow process but they knew what they were doing! After I come home they arranged for a nurse to visit several times a week, Occupational Therapy to visit a couple of times a week to make sure I had not run into something I tried to do that they did not think about teaching me! Physcial Therapy to get me moving more and more. Teaching me other ways to do things until I was strong enough to do it correctly. Making sure I was able to use all the tools they sent me home with. Things to help put on my socks, pull up my clothes, get things from high places, low places and to make sure I was doing what they said I had for homework. They made me do the steps and even took me for a walk in the neighborhood to see a friend that had just had knee surgery! Oh I was so proud of myself! They continued visits until I was able to drive myself a short distance to the local rehab facility where they got serious and made me a gym rat! Again OT and PT and massage and visits to their complaint department to VENT! Once again they knew I was ready for the next level when I started to feel well enough to complain! 😮
This was a slow process and many have done it quicker. You do what you have to do as I say! Everyone is different but we all have the same goals in mind. I was working out in the pool and that is where I felt I had freedom that is hard to describe. I was returning to the same room where I had friends in the aqua aerobic classes I used to take. I was in the heated rehab pool but we all could laugh together as we all exercised. I felt “normal” was coming back! That whole Summer of 2006 was slow going and progress was there, just slower. Summer of 2007 has been the best so far! I still am trying to build up my strenght in my back, hips and upper legs. GBS has shown me how to have patience and enjoy another side of life that I had a tendancy to rush past before! Also, I now have a very large family here that I can enjoy sharing stories with! Tell your Dad to do his BEST and be honest, they can make sure they provide assistance and do the REST. Oh REST that is still the dominate factor in my life, but I have it down to only ten hours of sleep a day now! Stress to your Dad that he gets his REST! I think his progression has come along very well so far. It is frustrating, watch for depression and as his advocate ask many questions. He will find how lucky he is to have a girl friend that can help with just minor things that are necessary each day. They will work it out! People will realise they need more help now than ever. As a caregiver make sure you take care of yourself too! Be Well!
Hello Everyone!
I guess I look at this phone call as a good thing when I hear they are looking for a connection and it might protect someone in the future from going thru what I went thru. I look at the medical world and see all the cures and good things they are doing. I think while I am going thru my genealogy that if that person lived today, not only would our home be crowded but they would have been able to get a shot or antibiotic that might of saved their life. Due to the tests and machines that helped support me when I went on life support I am here to work on my family tree! They told me that if I would have got this 15 years ago I probably would not have made it. I am for research by phone to collect data to find that common thread. JMHO (Just My Humble Opinion). Second thought why didn’t they just use our message board for their researsh we are probably more apt to post personal information here for the world to read about our health and GBS/CIDP. Hopefully we have raised more questions here for them to base their reseach on! 😮
Hello Everyone!
ssalin02 I am glad that you have found this forum and that your Dad is already showing signs of the GBS starting to reverse, with the movement of his leg. Sounds like the caregivers need a little support here too! This is a very varied illness and it has many variants, so everyone’s case is different but it sounds like you Dad is getting the care he needs. They are aware of the IVIG and the PlasmaPhresesis used for stopping the progression of the attack on the myelin sheath. Your Dad has progrogressed just about paralell to my case. I had the colapsed lung and my EKGs are not normal since I had the GBS. I had ventilators and traches fail. It is very scarey for the family and the patient. I can tell you that not being able to talk is very frustrating and on this site you can send for information for Caregivers, About the GBS and in the store what is available for the GBS patients. One thing I would suggest that if he is not able to speak to get the cards that will help you communicate. Be very possitive and keep humor as part of his very day. Print things out from this board and read them to him also. As GBS retreats it will be a very slow process and the last things to heal are usually the first things that were effected. Usually the numbness in the hands and feet. The nerves repair the sheath at a very slow pace and depending on his height he will take longer than I am to heal. I am on my 23 month of recovery and I able to do just about everything but slowly and I have to concentrate! I still get tired when I do too much. Continue to post and ask any question you can think of. We are here to support you and your family as much as you need. Also thru the foundation you can contact a Liason in your area if you think their visit would help your Father understand he will get better. I agree with the others rehab is very important but REST is also more important. Horizontial REST will help the nerves heal…..exercise will help the muscles gain strenght…but it is important that rehab finds the correct balance between the two or he could relapse and have a bad few days from over doing it and he must communicate with them and listen to his body! Tell him you don’t want to walk a mile showing off your new found independence because you have to walk back that same distance! If he has pain make sure that is addressed too! Was he put on a stomach tube? GBS=[B]G[/B]etting [B]B[/B]etter [B]S[/B]lowly. Did he have his eyes effected? Also don’t panic if he does get pneumonia they will be watching for any signs of that since his hospital stay is longer. Stay well yourself too!
Hello Everyone!
I just wanted to let you know that being 23 months after my onset I am doing well. I received great care and was diagnosed early but the problem was the IVIG was not working so they sent me for PlasmaPhresis at another hospital that could do that treatment. I think within the first two weeks I was diagnosed and had my treatments. SO I think that was really quick. I agree that everyone is different and you have to be patient. In the next few years you will know more about your case of GBS than you want to know! I did not have a great Summer at 6 months. I was not as active as I wanted to be….that following Winter at 12 months I could do more for myself but still had a long recovery to go and I was still deeply into rehab. I took it slow and expected that GBS=[B]G[/B]etting [B]B[/B]etter [B]S[/B]lowly recovery! I don’t think I expected it to be this slow because I had never been this sick before and really did not know what to expect. I can tell you I took the advice of many posts here, I got that rest each day. If I over did it because of an appointment I rested the rest of the day. Days I had rehab I did very little the rest of that day! On the days I did not have rehab and had to exercise on my own I split it up over the whole day and not jam it into an hour or two workout. When spread out over the day I did not feel it as much at the end of the day! But don’t get me wrong at the end of the day I was still tired, just not exhausted or so fatigued that I could not function. Naps slowly got shorter and I was like a toddler that I could soon skip my morning afternoon nap. Now I am able to stay awake during the day but I still have down times where I just rest and watch tv or a movie. If I party or shop for groceries I notice I am slower the rest of the day. But I don’t need to sleep as much. I still demand about 10 hours a day sleep, but can get by with only 8 hours for a few days and then I need more sleep for a few days. After a night out with friends, I come home very tired and ready for bed but the next day I take it really easy. I now bounce back quicker the next day. The fact that I am bouncing back sooner is a good sign and keeps me aware of my activities and I have really learned to listen to my body! REST is for the Nerves healing and the Exercise is for the muscles to get stronger but remember they are what burnes up the energy. The nerves are just letting the energy go to waste as they vibrate. Since that has almost stopped I have notice the energy level is way up and the exercise and strenght is coming back in the last year. I don’t have this down to an absolute science but I know healing can not be rushed. Bottom line you do too much you are going to pay by the end of the day!
Measure your progress by the month and you will see a bigger result. It is like being on a diet you loose an ounce a day that is one pound in half a month. Weigh yourself once a month and that is TWO pounds. It is a mind game but TWO pounds sounds better to me than only an ounce! But at the end of the month it seems so much more possitive. Those good days do add up!
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EMILY what a great update! Congratulations! Just reading your story has given me so much to look forward to. I have only been in this for 23 months and can do alot of things but you are doing the things that I wish I could do. Well maybe not all of those things, but the walking is my main goal now! The best report we have got back in a few weeks. I hope everyone has a chance to read your story! Thanks for sharing! You make me work harder and reminded me not to give up! 😎
Hello Everyone!
I have the meaning of slow that everyone can understand without giving a specific time in days, months and years. Slow is best described as NOT AS FAST AS WE WANT IT TO HAPPEN! Healing has some very different levels. You are working with keeping the mind possitive. You are waiting for the nerves to heal before they can get that signal to the muscles. You will also have to wait for the tendons and ligaments to stretch. Weak muscles are the major souce of pain. Any weak areas will cause you to wince and groan when just thinking of moving them. Sitting exercises each day will help with balance and standing and walking. It is a slow process, but your Mom is heading in the right direction. She will face some ups and downs and you all will be frustrated but remember to keep it possitive in the grand scheme of things she is improving slowly. Don’t give up and don’t let her give up! Brag about every little piece of progress! Celebrate each move. They are working on movement first and she is doing great! Range of motion will come later as she gets stronger.
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Well I worried about all those things before I got GBS and I have not stopped thinking about them. My Son is going to be 33 in February. I think that is not part of being the caregiver of GBS person, but a very big part of being a parent! I think having GBS has cleared my mind of the things that are not important in life. I have become complacent with other things but not with family life. I have learned what is important. I have tried to keep doing what we did before I got ill. We do participate in those activities but we don’t spend as much time as we used to. We were never late arriving, but now we are always running late. It just takes me longer to get ready. We leave parties and events before they are over. I don’t make any excuses for myself and some don’t understand. I know I have only been in this situation for 23 months but I feel that I am learning each day how to live with my new lifestyle. Do I worry? YES Do I get depressed? YES Do I get frustrated? YES Do I get angry? YES Do I wonder why me? YES Do I get mad at family and friends for not asking if they can help with something? YES (I would say “Nope we are fine, but Thank you for offering!”) Am I stubborn? YES Am I scared? YES Do I have good days and bad days? YES Am I looking forward to my husband being able to retire? NO!!! LOL I think those are all normal answers. Will life be easier having him home all the time? YES it probably will work out! Am I looking forward to the retirement party? NO!!! I don’t want to talk about it! He will be here all day and cleaning up around me ALL THE TIME! I will not have times that are quiet and I can not take naps when I am tired. OH bad to Nate! He is being a boy and that has to make you proud. As he gets more experience with the effects of his illness he will be able to manage his life better and have fewer relapses! That will not stop you from being worried. He will also become independant and that will knock your socks off too! Worry had not changed anyone! If you move on to the next level of caregiving and are less protective you will see it will have a good effect on your life too. You will be able to do more for yourself and be less stressed if you let it go. Rather than be worried for one person you can make it a broader problem and worry about the whole family. What can we do next Summer for fun and all those other enjoyable decisions. Open up the lines of communication and have family meetings and make plans for the future before he grows up and moves out! That is where I am now and I will still worry! I will still wonder. But I don’t play that game of WHAT IF…….any more! I have learned to let things go and let them be his decision. Now I am amazed how fast those years have gone by! I wonder if he will stop in around dinner time? Should I make extra? Did he pay his rent this month? Does he have enough food in the pantry to last if his car breaks down? I have to remind myself that worry is not productive. We have brought him up to ask when he needs something….anything! We have taugh him to do his best at any thing he tries to do. But I don’t play that WHAT IF…..game any more. I hope that you get to that point with Nate soon. You have to trust that if he needs you, he will let you know! Show him how to live, laugh and love! I wish someone would show us that worry is not productive! I will say a prayer that your worries are lifted, so you can enjoy giving him those lessons!
Hello Everyone!
I have a decrease in appetite too! I never get hungry and it is easy if I am traveling or busy that I don’t get hunger pains as a reminder to eat. Never did. So I try to eat something healthy 5 or 6 times a day. I eat a variety of good choices from as many food groups as I can. I wish I could give you a few of my EXTRA pounds! If I knew the secret of how to find more energy I would share that with you too! Hang in there and make sure you do mention it to your family doctor too!
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Hi Neighbor! Welcome and I hope to see your posts often. Let me know when the trees start to change color down there! 41 & 43 degrees here over the weekend. Hello to your built in support group. We like to hear from our caregivers too! Or hear about them! Thanks for sharing! 🙂
Hello Everyone
Hello Julie,
What would we do without those caregivers!! Lean on him again during this and I agree with what everyone said. Prayers, knowing what to expect and what you have done in the past, knowing what to do and what not to do. Hang in there and get well, but don’t rush, just hurry up and get better! 🙂
Hello Everyone!
Up until now I have not had any indication from any of my blood test that I am low in any of the vitamins. I am not in constant pain and I can tollerate a zap here and a zing there. I get re-evaluated from time to time to make sure everything is holding up. No new pains or health issues have popped up that we can not work out! If they do we concentrate on them one by one. I have gone thru this pretty well and feel very lucky up to this points! I feel for the most part it is due to the team of Doctors I have and how well we have communicated with each other so far.
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Valerie it is amazing how much you will find that all of us can understand and relate to your situation. My mom has Parkinsons also! I try and call her on the phone each day but it is hard because I know we are both scared. Her of getting worse and me of how soon will I get better so I can have my independence. Think of it this way! You need to find a friend that you can to into the pool with. Someone somewhere is willing to help you just have to find that person or persons. It is a big responsibility but I am sure you will find someone. You just have to go looking for them. Make a list of the things you will need them to beable to do and post it at the YMCA. Specify you need a man or woman. And what their duties would be. Also check with some of the Doctors offices to see if they know of a client that would be interested. Active people with Arthritis might be in need of an aqua class but just need a friend. A student nurse, nurses aid or PT person or a life guard might be interesting in your request. How about someone from the Library, Firehall or local judge that has some people that have to do community service? Keep turning over those rocks and you might just find what you are looking for under the most unlikely location. Woman’s groups or Church groups or a Senior in High school or a college student looking for income or community service project for school. Others will have ideas too!
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Cheryl hang in there I know it is frustrating and hard to deal with this kind of stress. Keep getting information and be the squeaky wheel. People just don’t realize how hard it is to get into these programs for one reason or another none of us qualify. That is how they save money. Keep applying and keep appealing when you think you have a good case! Also, call back from time to time and talk to another person. Sometimes the information we initally get is incorrect! Talk to every agency you can and ask if they know of some where else you can apply for any kind of assistance. Also ask your Doctors and any case worker you might have. I called my local hospital and talked to someone there. Did not get me any where but she had some good ideas. I needed an inexpensive transportation. Age and income wise I did not qualify, I don’t think they wanted me on the road at that time. I know I would not have wanted me to be my driver! No help was found that did not cost an arm and a leg. Besides if I had them I would not need a ride if they worked right!
Hello Everyone!
This is a time that we will remember where we were that day when the coverage come on tv. I had sent my husband off to work and was watching my morning tv programs. They broke in to report the first plane. I called my husband at work to tell him to turn on the tv. He did just in time to see the second plane hit. By this time I was on the internet talking to friends in different parts of the world about what had happen. Gathering all the information I could when they evacuated Pittsburgh because there was still one plan missing. Right after that Flight 93 was brought down only about 60 miles from here. Scared I was glued to the tv screen and talking to my friend that was under hospice care due to cancer. She left 3 children ages 6, 15 and 19. She was scared of what kind of world she was leaving her kids to live in. I could not answer her questions before she died. I still don’t have a good answer for her today! I feel safe but I fear for my safety if that makes sense.
Being ill I can appreciate life and am still gathering how many circles of friends, neighbors and family each of these people that we lost on 911 have effected people from all around the world. I am glad you named some that you knew! Each year we hear more and more stories to keep this in our hearts for ever. GOD Bless the World and protest our memories of what it feels like to be FREE!
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Helga I am sorry you had to deal with this person that has not been very professional. It is not your job to educated these people they should be seeking information constantly and updating their information. The fact that he might of been having a bad day and now realized it is no excuse. He is very unprofessional.
You do not deserve the stress this is putting on you and if he was not a professional person, but was even half an ounce of a compationate person, he would not do this to a friend or family member. It should never have been done to a client!
Maybe again after dealing with the slow results of GBS healing he has burned out…..in that case. GET OUT of the profession! Think how frustrating it is for us.
I agree with Cheryl. Drop his butt off in Philadelphia and I will kick it all the way across Pennsylvania to the Ohio border where Cheryl can continue his higher education. I don’t have pain but I suffer from frustration, fatigue so that will help me get some attitude with him!
Hello Everyone!
Liz you know we are here for you! I think it is time to have a family meeting and see if there is another solution. Maybe other family members or friends that could spend some time helping you. If not then you and your family might want to set some boundries on how long you wait before you seek other ways to help your Mom. You may want to make some calls to agencies in your area that have volunteers. Call a social worker at the hospital near you, they maybe able to advise you on what is available. Getting these answers now can help you make arrangements for a later date. It is easier on everyone if it does come to that point later. That is something you don’t want to rush into at a later date. If you have planned this ahead, everyone knows what to expect. You can then put the plan into effect when needed. I am sure your Brother can also find out thru work what agencies are available for different levels of care. This plan could also enclude plans for you also. Please don’t let this total decision be on your shoulders right now you are carrying too much of a load and stress will make you back slide in your efforts to get well. You as well as your Mom deserve the best of care! But you already know that! Remember how we tell everyone to take care of our caregivers? Well you need to take care of you so you can take care of your Mom. Don’t be ashamed that you are asking for help. If you need a phone call please let me know! We have not talked for a while now.
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Once I was traveling weekly to rehab twice or three times a week…..my insurance paid for 20 visits a year so the rehab facility did not have alot of time to work with me before I had to quit coming or pay for visits myself. I had to wait for that time to expire and the new coverage to pick up where we left off. That is the only complaint that I had with my insurance plan. I do not know what I would have done if I was not seeing steady changes or improvements. I just accepted it and went to a fitness club and continued to work on what I was taught and shown to get stronger. It was more diversitified than most and was started and supported by our local hospital. There was many things there I could do and many more I was not able to participate in yet. I did use their pool alot and some of the machines and the slow paced classes in and out of the water for people with handicaps and Arthritis that did not have so much pounding on the joints as the aerobics and pilates and step classes. I went into the beginning bands and weigh classes too. That kept me fighting gravity and just not pool work. MOST people do not have that advantage like I did! Insurance runs out so does their progress. I agree with the don’t use it-loose it theory. This might be my shortest post ever! Do I get an award? 😀 But you are not going to hurry up progress in the GBS either. My progress stayed a little infront of my insurance coverage! I am glad my rehab people kept track of my coverage and visit for me. I have heard of others that did not do that for their patients and run up large medical bills. OK finger exercises/typing is done for the day! Have a good weekend!
PS you can only start to specialize when you have learned it all and then can funnel that knowledge down to only one group! Since all of our needs are different we need someone that usings all methods in some way to get us to a point of being sucessful. There is no black and white here. It is those grey areas that keep you on your toes and challenge your job so you can not get burned out! If something is not working you have to be able to change gears quickly so your student does not give up! Insurances are a pain! They don’t see the slow progress and will give the GBS people stress all the time. One of the things that will really do us in, quickly.
Hello Everyone!
Maria with time you will get more experience and begin to see what each patient needs and how you have to be creative. One thing might not work as well at first, but by making another area stronger to support those other areas that need worked later on. For example as the wrist gets stronger than the fingers can do more. If the back is weak the abs and hips have to be strong to give support. It is correct the whole system has to become stronger. Someone mentioned that they had to scoot and crawl to get around. Being able to do that is more of a work out that you realize. It took me many months of Rehab just to be able to do those things. I was taught backwards in a sense. I was not taught to crawl and then stand. I was taught to get myself sitting on the edge of the bed and then stand with the aid of the walker. It was much later that I was able to crawl to play with me dogs and get the ball from under the furniture. I could know kneel down to get down there I did not have the strenght, but I was able to walk to get myself to the kitchen or bathroom and then back to bed or the recliner or chair or couch which at first I was not able to use because it was too low to the floor and I could not get out of it! I also was able to come home because I had people that promised to take care of me and my needs even if they did not live therre they were as close as a phone call and had the key to get into the house for an emergency. I hated to leave the door open because the dogs did not like people just walking into the house without me going to the door as we did in the past routines.
The nurse and OT and PT come to the house and were dismissed as their jobs ended. They worked very hard to get me where I could do things for myself and not have to have daily help. They took me for walks in the neighborhood to visit a neighbor a block away! She had knee surgery and I actually went up there to check on her one day with the therapist! OT was sorta the stuff type and did everything by the book…..but we were not reading the same book! I was always thinking about the future and wanted to know what to expect! I actually was able to tell him what I wanted to be able to do right away and what he wanted was not of interest for me today and we would do that tomorrow. I had to have the solution to my daily problems before I could worry about being able to accomplish things that I had help with for now! He would get way ahead of PT and in my household it just was not realistic for me doing things that were on a different floor and I was not traveling up and down to do laundry right now. I needed help with the can opener or turning the door knob or turning my hand over to accept a pill or change from some one. My rehab people were very good about being adaptable to my daily needs, whims and dreams. They were intouch with each other and all them reported back to my rehab doctor. I also made monthly visits to her and that was the biggest goal was to get me able to get in a higher vehicle to travel. Once I was able to travel then I could eliminate the people coming to the house and get PT and OT at a facility near my home. There the OT person was very adaptable and listened to what I was saying. In PT I got herded thru their schedule of events and they left out many areas where I needed help. I was struggling in some areas. Then I started to demand and be my own advocate. (I learned that from this site.) You have to be able to communicate and boy did I open up the lines of communication. PT would suggest something and if I was not comfortable with that route I expressed my concern if they did not listen to my request to make sure I was not hurried past something I felt I was not ready to move on from….I stood firm and talked to their boss, the rehab doctor. They would say that was not on the sheet of instructions for them to do, I had it put on the sheet of instructions for them to do. I had me to worry about! I have to add I was not nasty and did all this with humor so it did not look like I was stepping on anyones toes! To this day I give my OT person a “high five” when I see him and his family at the local store. We know it is showing how far I have come from not being able to lift my arm from my side to now being able to give a high five that creates some noise!
As you are able to watch the others support and manipulate the persons body into standing from sitting. Watching where they put their hand and feet to give support and how they will step thru a walker to use their limb as support for a weak knee that will not lock so that that person can take a few steps will amaze you. Our accomplishments will be your accomplishments daily. I had OT and PT work with me in the one unit of the hospital until I could get off the trache. To watch them work as a team on a person was amazing. It gave me so much respect for what they do. It is a gift we give to each other without mentioning that bond. To this day I admire them and keep in touch with nurses and aids and send them message with new patience they have that I know. We still can laugh at the way it was and hug toward the way it will become. You have to be creative or it would be boring. People usually hate to exercise anyways so you have to make it so they enjoy it. You have to make it customized to their needs so they can see progress, not so you can turn the page to the next chapter in your book. You also have to be firm to say: “No, you are doing it the wrong way!” or “You are not doing it the way I showed you.” “If you just go thru the motions and don’t try you are not going to do well.”
“You have to concentate!” “You did it because I challenged you and you did into have faith in yourself.” I got my share of criticism! It made me work harder. It does that when they say in order to go home you have to do this or that and list the goals. To drive they listed the qualifications and I added some of my own. Better to be safe than sorry!
As far as facial exercises besides the ones mentioned are:
1. Pretending to blow out birthday cake candles. That also increased lung function. But also works those facial muscles.
2. Fill up those cheeks like you were going to play the Bugle. Squats in the pool so your head gets covered not just your shoulders….that again worked on lung capasity and strenght. It is more fun when they serve as double duty. This also helps you to hold your breath for in the shower. You would be surprized how the GBS patient wants to blow out when water hits their face.
3. Pretend to kiss by kissing the air 25 times as fast as you can. Again breathing control exercise too! BIG KISSES with the sound and all! I do this while the dog tries to figure me out, so people don’t think I have lost it!
4. Putting your bottom lip over your bottom teeth and saying MUM, MUM, MUM as many times as you can. It helps with the neck muscles and swallowing and strenghtens the jaw like chewing gum does. Also helps with the tiny muscles around the lips that give you wrinkles.
5. Eye lid lifts and Eye brown lifts combined with hard squinting and rolling the eyes. Following with your eyes the outline of a house and draw in all the windows and doors. Also following the ceiling tiles and making Z patterns from one corner to the other also help. Warn people you are exercising and not getting an attitude! Oh don’t forget the side to side movement too! Ofcourse, all of this is done slowly or you will pass out or atleast get dizzy!
[B]All this and I don’t think I really answered your question! OH DEAR![/B]
Nice thing about the message boards is someone is there to add to what you said or didn’t say! Private Messages you miss out on that important input! You can see I am either very talkative or as I wish to think I am exercising my fingers by typing!
Hello Everyone!
Maria once you start to work with people you will find just how slowly the GBS patient is compared to other types of injuries. Usually their insurance coverage will run out before big progress is made. They will have to wait for their policy renewal date to come around before they can continue with therapy. For the place to start with treatment the GBS person will not be able to do much more than move each muscle group. Repetetion will wear out your GBS person. Even if you are manipulated the persons body for them. Until the signal gets correctly to the nerve you will be doing just basic movements for each area they are having problems with. You will not be even considering Pilates or Tai Chi as much as you will be doing movement using bands and putty and other aids. Then you move up to the balance or stability balls and light weights and movement in the water…remembering that just a slight uncontroled twist can injure the GBS patient. Later bring in the machines to keep the movement correct and the tension and weight stable. For the most part you are showing the patient the correct way to move and that they can move those parts. Until the body functions come back like the functions in the pelvis and feeling comes back they will not be able to feel they are moving correctly. So bridges and tilts and all those advanced things will be quit a challenge for the GBS person to make motion flow. Slow dance moves like the simple Waltz or Cha Cha will be a big challenge for the GBS person. Just holding the positions in Yoga will be a very big challenge for the GBS person. Not to mention getting up and down the steps and walking in everyday life, being able to stand at the sink to wash the dishes or stand at the check out line at the grocery store.
You said “I am just trying to get an idea of where to start a PT treatment for a GBS.” In a nutshell…..Slowly at the very basic beginning. At the begining you are working with some one that is paralized. Yoga and Feldenkrais Method is too fast and required some strenght to make the continuous motion needed in the Feldenkrais Method. Remember also there is many methods or versions of Yoga. So those for the beginning GBS person are too advanced also. The beginner will have to coordinate breathing, motion and control for each required motion. Doing maybe just 3 or 4 movements might wear out the beginner. Remember it is just an effort for them to chew to finish breakfast. Brushing their teeth might take minutes like combing their hair my require them to take a break in the middle of just combing not even styling their hair. It is very hard to put into words what or where in the whole scheme you mean by the “beginning”. I agree that some of the conventional methods leave out many needs for people. Remember with the GBS person it is the message that goes thru the nerves that you have to wait for the connection to take the right route. You are not dealing with the brain not knowing how to do somethings like in an infant or stroke patient. Our brains remember what it was like to do those things. Remembering is frustrating because it is like being locked or tied in our bodies. Some of it is mental to think things through, but for the most part it is moving and waiting for the nerves to get the signals to the correct part of the muscle to make them move.
To describle that feeling is hard. I can lay there and think as much as I can that there is movement. I can lay there and visualize as much as I can that there is movement. Until there is movement in that area it does not work so manipulation seems to turn on an area. That pointer finger is motionless and I stare at it. Nothing! I stare at it and command it to move. Nothing! My OT picks it up and lets it fall and I don’t feel it hit the table top. She says to move it! We try and try and go back and forth. Just that thinking tires me out. I try and try….no progress that day. That same day the Speech therapist comes in and works with me to learn to swallow my saliva and the muscles are still too weak! I am exhausted and frustrated. In my dreams I am normal and can dance and sing….now I can barely make a noise. My eyes were not able to blink to give a yes or no answer. I am in this body and I want out! Rolling me over to my side for a bath and changing the bed is too much for me. I am not able to speak to tell you that I am hurting. There is no expression in my eyes to beable to convey to you that your fingers touching my body hurts. In an severe case of GBS these are the things you are dealing with in the beginning. So saying “beginning takes me back pretty far where with others their beginning might mean they have use of thery body from the waist up and can speak and watch tv and hold a book to read. Many of us were not able to do that! When does therapy start? From the first sign of the illness reversing. Moving the patient so they don’t get bed sores is moving those muscles, although the aids and nurses don’t realize how good it feels to move but how painful it can be also just to be touched. The massage you get from being given a bath makes your day! You are able to tell the places that are starting to regain feeling. Sound makes your whole body shake or rattle and your eyes might wobble. Just being able to close your eye lids would be such a relief so the room does not look like an earthquake is shaking the room.
I think you are going to be a good therapist because you seem to care and are doing research. Time will tell as you gain experience! Good luck with that. Keep the good questions coming! I just hope I have explained this so it makes sense.
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It is good news to see that he is making slow progressing in the right direction. GBS is not caused by those things it can follow those things when the body is compromised by those things. GBS is an autoimmune disease. It is also called acute inflammatory demyelinating polyneuropathy. Yes it does feel like your body is stiff just like another autoimmune disease like Arthritsis.
White blood cells are triggered into damaging the nerve covering or insulation, leading to weakness and abnormal sensations. It is a slow recovery and you can read about that on this site. Everybody is different in this recovery and the amount they recover. Some people are in pain and have to go on medications. Some like myself do not have to take pain medications but for the most part at one time or another I have experienced most of the different kinds of sensations like stiffness, tingling, vibrating and fatigue like the others. It is a nasty illness and healing can not be rushed. To hault the attack on the body a patient is usually given IVIG or Plasma Pheresis to hault the attack on the body. You are seeing the slow recovery of the illness in the reversing phase. Nerves have to heal and muscles and tendons and ligaments have to stretch again. Here is the USA I received Occupation Therapy (OT) and Physical Therapy (PT). OT was for the tiny little areas like the fingers and hands. As those areas got better they just put me in PT, but if I had any problems with my hands or fingers they would put me back into OT and give me exercises to do at those areas that did not work as they should. I am still under the care of a Rehab Doctor and doing PT, 23 months after my onset! Dr Parry has written a good [B]reliable[/B] book on the subject. Some of the printed matter out there is not correct or reliable. Working slowly in water (94 degrees) is good for the stiffness because the water puts resistance on all areas of the body but takes weight off the joints. The bouyancy makes it easier to work out but you should be very careful not to OVER DO IT or that will set you back a few days. He will learn to pace himself as he gets stronger and more aware of his body. Until they the phisio team will keep a good eye on him and only work with him on his level. Believe me it will seem slow to him also. After many years he will still continue to get better. Hope this helps a little! Let us know if you find out anything interesting it is nice to share here!
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This all sounds so familar. Eyes were wide open and swollen and painful to touch. I am so glad they did not sew them shut. Double vision so you can not read or watch TV or even see what time it is. It is hard to recognize people each day you have to ask them who they are because they have changed their clothes. Those terrible times when trying to do something and my vision would just go blank. I did not know at that time my eyes were bleeding. I would stop walking and tell them that I was not able to see. I don’t think they believed me. Also the rug looked like it was rippled and I would stop. Working on doing the steps they disappeared and I hated to complain or say I could not do this so I would just shut them and feel with my numb feet for the stairs. They would tilt my bed upside down and that would make the pressure and bleeding in my eyes worse, while they made the bed or moved me around. The field of vision has improved like the NeuroOptomoligist said it would. The Periphial vision has got better. I have got back to driving but slow focus and light did set that back until I felt safe. It does take time and I feel very lucky that all this has got better in the 23 months since my onset of GBS MF. My husband will take me out and watch for the muscles in my left eye to sag. He will just say to me do you want to go home and then I think about it and can feel it is closing more than the other eye. Glad he is so observant! Hang in there it does slowly get better!
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I agree with Cheryl it is very easy to over do it! Just because you did it yesterday you might not be able to do it tomorrow. Rest is required. Work on upper body one day and lower body the next until you find what works.
[B]”I will see how he is tonight and then we might try some walking.”[/B]
When you hit a point where they over do it, back up and do less. Also think about trying to work on other areas that need to be helped. Sometimes when an exercise sets you back that area might need more work on strenght. It might be that the legs are weak but the hips and back and abs are still very weak and not able to keep up with the workout that the legs are being given. Routines have to be balanced and work all areas: Upper body, core and lower body. If you forget one area you are not going to get very far with the other areas. For example, if your abs are weak, your back is going to suffer and therefore walking is going to be a struggle. Continue to work with the basic exercises you did at the very beginning they continue to be important in the total picture! [B]Patience is the hardest thing to exercise![/B]
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Hello Everyone!
I know that everyone will give their own personality to their workouts but formal training should be followed for each and every level of therapy that is given to a client. You are not looking for cardio for the GBS person. You are there to make sure they learn to hold that foot in a particual position to get the maximum out of that movement. That arm or leg should not be twisted and the back should be in proper posture. All these things are the duty of the PT person to avoid injury to the person being helped. The GBS person does not need a routine that is going to wear them out. They need guidence in moving and maintaining proper position of each movement. Yoga and many of the other methods of exercise should be done by a trained person with formal training in that area. Many of them are 4 to 6 year courses. I would not do any of those movements with out a certification of formal training.
For Example: moving in the water you never step and cross one leg over across the center of your body if you have had a hip replacement. There are certain movements that a patient with knee replacements can not do. This is also to avoid injury. Each person is so different and the routines have to be so refined to meet their needs. Just to touch a person with GBS you might put your hand under their ankle/heel and they will hit the roof because you have touched a place where the nerve is close to the surface and tender to touch. The pain is extreme and brings on instant tears! You have to be very careful with the fragile GBS patient. They have muscle soreness, nerve pain, possible nerve damage not to mention tendons and ligaments that are severely tight that it might take months before those conditions change. You have to be able to work around all those things and continue to get them active without using up all their energy they will need for the rest of the day. They don’t suffer from being tired. They don’t suffer from being exhausted. They suffer from fatigue that takes days to overcome being over worked. Very fragile balance! Be very careful when you design your own methods for these things. Liability from a specific method that injures a client can set you up for a huge law suit. Not to mention your boss being very upset with you. All my OT and PT and other things were overseen by my Rehab Doctor. It was my job to report how I was feeling to her. The PT worked on only areas that she wrote out a prescription for.
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Rick that is great news! I am glad you are able to pick up that guitar. Always nice to see someone return to something they enjoy! I appreciated every thing I was able to return to even more! it is not an easy journey and you have to plan and work and try again till you get to that goal. Each little goal adds up like pennies in a bank. We have to just save up each step till we can make it to the top of the mountain.
When I started up my computer it was making all kind of noise. I think it is going to leave me stranded. I keep trying to save stuff but I forget to save changes to files. I usually loose alot of data too! I don’t think I will ever learn!
Glad you are back! Post offen! Exercise regularly! Save those pennies for a new guitar book!
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Linda I think they dislike the work in the pool when they do not have a pool. It is a big part of the facility I go to. They start you off on the beds where you left off when you were in the hospital and go slowly from there. They try to get you strong enough to move around in your home and get you working with gravity. It is a work out that will need to be geared to your individual ability. They do push but let you work at home too. When they put you in the water they usually do require a routine on the machines or mats to keep you working with gravity. Being in the pool is much easier because of the weightlessness. It was easier for me to get worn out in the pool because I was enjoying myself and did not pay attention. Good think they had an eye on me! Coming up the steps out of the pool was always a struggle fighting gravity and getting my sea legs back under me! Now I still prefer the pool, so I make myself work out on the mats and take Yoga and some other on land programs. I am slowly getting better and see a difference each month or two. But I continue to get better! Glad to see everyone posting! Nice time to get back on a schedule now that Summer is coming to an end.
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Hello Everyone!
Maria T. ~ bxrgrl27 First this illness effects everyone different, so make sure you work the GBS patient carefully and don’t get ahead of their needs. They have to listen to their bodies and you have to listen to them. With all the variants your program has to be able to accommodate someone that is completely paralized to someone that only is effected from the waist down. I think most of us started out with movements done in our beds, until they could evaluate the needs of that patient. Tempature of the water is very important since most of us are not able to take real hot water like a hot tub (104 degrees) or a regular aerobics pool that might be kept at (84 degrees) for those that are really working cardio. A cardio workout would send the GBS patient back to bed for days. I was worked in a rehab pool that went from 2.5 or three feet to 5 feet deep. Depending on the patients height and use of arms to maintain balance. Most rehab pools have a lift or crane if the steps are not an option. Just waves and those nasty jets can knock a unsteady or weak GBS person into deeper water. There should also be a seat around the pool for resting or working leg exercises. All flotation devices come in handy at one time or another as needed. Noodles are great for stretching and balance. Agua weights are too much for most of the beginners that need are weak they come in 5lb, 10lb, and 15lbs. At first anything that provides resistance should be added carefully. Those muscles, tendons and ligaments are very easy to injure with just light twisting caused by the water. Ankle weights are not necessary, just move to shallower water. Swimming with full arm movement is usuallly way down the road. Kicking behind a surf board or kick board works too many muscles at once and will wear out your GBS person quickly. Avoid those kinds of things at all cost. The muscles don’t need strenght as much as they need movement. Work on range of motion and balance. Breathing is another thing to consider. Some have had lungs colapse or have had pneumonia and need to build up lung capacity, but more important the diaphram is a muscle and probably needs strenghtened too. Some of the things I did in bed and while sitting in a chair can be done in the pool. As well as some of the other movements that strenghten the legs, back and abs. Walking forward, backward and side to side is alot easier in the water holding on to the wall of the pool with your shoulders covered. To increase the challenge then try to do the same exercises with the person is shallower water. Gravity then starts to add a real challenge. If a lift is not available, under work the patient because they will feel good and want to experience freedom and weightlessness, NOT realizing that they have to fight gravity getting out. That will be the hardest exercise of the day, so save extra energy for that. Knee bends and other exercises can be done in the pool by just using the different levels of water. Remember that every movement is being challenged by the resistance of the water! Writing your alphabet with your toes under water and playing the piano with your hands under the water can help also and make sure you use some things that are different and fun. Keep your routine interesting and doing things to music that is slow and relaxing like Tai Chi or Yoga can also be of benifit. Extending the leg to the front and next to the back will help work the hips and make sure you tell them to watch their posture to avoid injury. Lifting the leg out to the side and back or on an angle will help with strenght for walking. A balanced routine that works upper body one day and lower body the next or a combo each day but use different exercises make it interesting. Watching for fatigue is so important. Make sure you stop before they are tired, don’t push and remind them not to push their limit they will gain more that way. Exhausting is their worst enemy. Depending on the patience ability it might be easier for them to straddle the noodle and get in the deeper water and peddle with their feet and legs like you would on a bike. OK so I have not posted for a few days and I like to talk too. I think that is one of the side effects of the GBS person. Keeping things possitive and allowing them to use humor to laugh at themselves will take some of the stress away! Remember GBS also means [B]G[/B]etting [B]B[/B]etter [B]S[/B]lowly! Hope this helps you see the differences between the illnesses and their needs. They differ so greatly from what a stroke victim or car accident patient needs.
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Mrs. BK Welcome and thank you for being an advocate for your husband. We don’t give enough credit to our caregivers here. I would like to let you know how important you are to us! If you eat healthy you should not need supplements and surely don’t need to purchase herbal concoctions. I just read about one last night that was the cure for GBS. I could not believe all the mistakes in the site. It looked professional but the claims were just so far fetched. The information was so poor that I wanted to rip the site off the internet for so much misinformation. I agree with the others the nerves need plenty of time to heal. Only REST (horizontal perferrablly) will help the damage to the mylyin sheath. The muscles need exercise to build strenght. You have to listen to your body on the activity level. Do too much and that will set you back a few days. It does take a long time for the residuals to fade away. Since the GBS started in his face he might have Miller Fisher Variant which effects the eyes? You did not mention those. I had the IVIG and it did not work so that is why they gave me the Plasma Phresis. You did not mention if he suffers from pain. I wish I had a dollar for each time we had a Doctor repeat something they read from the internet that is wrong. You will pick up a lot of information from these forums and see that everyone had a different rate of recovery and also different effects from the onset of GBS. I still have tingling in my hand and feet and trouble with my eyes. Those were the first places effected 22 months ago. I still have no stamina but am better than I was when I first come home from the hospital. I was there of only 9 weeks. I could walk twice the lenght of my house and steps before they would let me come home. I had Occupational Therapy (OT) and Physical Therapy (PT) at home till I could get to the facility to work on getting better and better. I still enjoy the PT in the rehab pool. I need to get more stamina to walk a longer distance. Large grocery stores and I don’t get along unless they have an electric cart for me to drive. I have to conserve energy even at this time. I still need more strenght in my legs and hips and abs. The upperbody strenght come back slowly. I am still making progress. Guillian Barre Syndrome or GBS also stands for [B]G[/B]etting [B]B[/B]etter [B]S[/B]lowly and we are! Lean on us as your extended family! We have been there already! Keep a Journal because BK is just in the early stages of healing and things will change. Don’t believe the Doctors they don’t read this site! Keep up the great work and use humor and be possitive it does wonders!
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Carol J we are very close in age. I realize that you are still having problems with walking. If there is any way you can get rehab in a pool, they are great for helping with strenghting all muscles, range of motion and balance. They give you enough support and there are devices you can wear to assure your up right position. I got so much out of aqua therapy. Being in the water took away the fear of falling and helped work muscles that were still too weak to stand or walk. Some pools are equip with paralell bars and some with chair lifts. They all have steps and rails to help the handicapped. Worth checking into some pools in your area. Maybe there is some one that can help you get intouch with one of the fitness centers or rehab places. YMCA or YWCA that have indoor pools. Check for referrals thru your local hospital. You are doing great with this site and once you are comfortable with PM or private messages you can use them too. Or you can email me at [email]yourpalkit@hotmail.com[/email] Put GBS in the subject line!
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JennIvy….it could be that the medication they have her on if there is any pain might be doing that too! I was like that when they gave me morphine. It gave me night and day terrors and I told my family to call 911. I wanted to leave the hospital and go to the other hospital up the street. If it continues you might want to bring it to their attention that is not normal for her to be doing that.
I am glad you got to see your Mom! I am sure your visit made her very happy too. She could show off all she can do. I am sure Christmas is going to be a great time for all of your family! Just think how much change there is going to be in all of us!
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If each of us takes up a musical instrument that we will enjoy and that will help us work those areas that need that extra boost we could have a great band….maybe even an orchestra! Flute would be good or the piano too! Just not the drums for those hands but for the shoulders that might help. Hey we could use you all in our musical group! How about it Gabe?
Those stretch bands and putty were great things to use in rehab! So was using my pillow to squeeze, it really helped too! Just don’t do the squeezing motion but the reverse motions to use those other muscle that straighten things out. Waving with an open hand helps to stretch the fingers or swishing your hand in water with it out stretched and using the water as resistance to push against. Even reaching up to the wall and pushing against it will help or the kitchen counter. Washing the windows or the car will also help! Oh did I mention washing the dishes and pots and pan? Cooking and baking. Doing the laundry? Grooming the dog! Oh how nice our lives were before and can be again! Just have to work toward that goal.
Has anyone kept their kazoo from their childhood? I think that is why I am not good at karaoke I was humming playing the kazoo instead of singing the songs. Well that is my story and I am sticking to it! I bet with GBS that humming would get on your nerves really quickly! But I still want to be one of the kazoo players in our band!
Gabe hope this had got you thinking what else you can be doing to exercise those hands! Hope you get back to work soon!
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All this sounds so familiar! Now when we are out visiting or at a long event my husband can tell I am tired, my eyes does droop. He asked if I have had enough and I know it is time to go home and rest. I had hemoraging in my eyes and they actually were sore when I touched them while washing my face I knew there was pressure in the eyeball. My eyes were wide open for the whole hospital stay and double vision. I had the slow focusing before having the MF. While in the hospital a nurse told me to request a Neurophthalmologist, which I did. He seen me twice while in the hospital and has seen me many times since I come home. Very slow results, but each time he sees improvements. I have had my reading glasses prescription changed twice since I started going to him. I get them at the dollar store so no big deal I can just donate them to the thrift store afterwards. I always make sure I get the glass lenses. Before the GBS/MF I had twitching but during it everything was paralized. Now no twitching. I did have trouble with dry eyes. The nurses used drops, again at my request. Pretty hard to request stuff when you are not able to speak. When they suggested stuff I would agree and they would forward those requests to the Doctor. I also requested warm compresses. At night I did not get the drops I got a gel that they use on coma/stroke victims that can not closer their eyes. These are times when your family member or advocate can help. Now my eyes are much better and open and close properly, not watering as much. I still do get some salt build up around the eyes and goop but that is minimal! [B]One caution that I would like to see the hospital staff do is not tilt the bed of patients that have eye problems. This puts unnecessary pressure on the eyes that can cause damage. Yes, it is nice to use those beds to slide a patient that has slid down the bed to the top again but THINK![/B] Sorry for the vent! 😡 LOL A quick tilt would be ok for the normal person, but to let someone lay there upside down while the assistant is paged to help you is a little much! Oops! Venting is brought on by Guillain Barre Syndrome! 😮
Eyes are important so don’t let things go too long without talking to a Doctor if things persists. We tend to blame everything on GBS!
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Gabe is having problems getting good information to his OT to use on him. They have a limited knowledge and access to aids for PT and OT. He is having problems with his fingers twisting. After massage they are able to be straightened but they soon pull up and twist. Please send Gabe any information to sites you can or suggestions that might help him with the use of his hands. He has got this far but his therapist is better with the larger muscle groups from what I can see than those tiny groups in the hands and feet.
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Lovemydad you are doing a great job being the advocate for your Dad. I do have one thing I want you to watch. “We are changing up his daily therapy.” Don’t let them do too much at first other than just move the larger muscles groups like the arms and legs. Just to move things now that keep him from cramping as the signals from the nerves start to reach the muscles themselves and can get motion back himself. Right now it is more imporant that he RESTS that is what is going to help the nerves start to heal. Right now they should be just moving each finger a few times each visit and the ankles. Never over doing the the movement in just one area for too long, but trying to keep all joints moving. You might not see much results but that keeps all areas from from locking up. Right now they will work the tendons, ligaments and later the muscles will come back and can not be rushed. Rush them and they burn up more energy than he has since the cover to the nerves is letting that energy escape. Is he being fed thru a feeding tube or on soft table foods? I was still on the feeding tube at that time in my recovery. I was just starting to take a sip of water to wash down a pill. I was also just being moved to the same care unit as he is in now, so I think he is doing very well. Sounds like he is frustrated. I can tell you that you don’t get any sleep in a hospital with all the noise 24/7. He will get better bed rest when he gets home and will still need it. I am sure he is worried about you and your Mom and worried about all the stuff at home that he normally does. To add tradegy and loss to things has to be really hard on him because his brain is working in high gear. The body can not keep up and taking away his freedom and independence has to be really hard. Not being able to go to the memorial does not give him closure. Maybe you could tape the service to show to him at a later date. Seeing other family members and friends and hearing kind words about the deceased might be of great benefit. Maybe he would like to have you say a few words or have someone read a note from him and how he knew and felt about these special people? That way atleast he can feel he was a part of the service. It might help him thru grieving. Try to releive the stress of every day with humor. Keep things possitive. 😉 It is the best medicine. Keep up the good work while you take care of your Mom and yourself! We are here and thinking about you and your family. Your cyber family also sends your family our sympathy on your loss. I am glad you and your Mom have decided to attend the service.
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I read all these wonderful posts and think how your daughter must of been typing that email and letting the emotions flow. I am sure she did not want to upset you and let you hear the emotion in her voice. Email is an easy tool to use to state what you want to say without interruptions, but it does not even come close to how a big hug feels. Next time you see your daughter give her a big hug and tell her thanks for the email! It is great you have left the communication lines open to her but your family will never know how much impact your messages here have on US….her family here!;)
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Welcome LovemyDad and you are a new member of this large family now. Let us know what we can help you with as far as questions there is no stupid questions. We also love our care givers so take care of yourself and for now share the load with other family members and friends. I agree the most important things it to keep things ++ positive ++. Healing takes so long for us to see results. I celebrated the tiny parts of healing too!
Exhaustion was the worst part of this for me to handle. No matter what I did to control it did now work and still does not. It is like having the flu for months and years. It controls me every day. If I over do it, I am reminded for several days after that I did too much so a Journal helps me thing what I have done the last few days. I have learned to pace myself. That is getting much much better and I see my self still doing better 22 months after my onset of GBS. When we say exhaustion we are talking 100 times greater than just tired. Times when your arms are heavy and just are too weak to lift a half cup of water to our lips to take a pill. I know I was not doing that much when I was a month into this illness. Hang in there and keep things possitive for yourself too. You will have alot of stress to deal with when caring for him when he gets home. He is saving his energy…start to pace yourself now for things ahead of you. This is very hard on our care givers and we can not be without you!
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Dawn it sounds like the water slides might of been enough to set him back a few days where he would need to rest. I think the exhaustion is coming from the sinus infection. By now you should be seeing signs of the residuals letting up if it was last weekends celebrations. But I would not stop doing those kind of family events in the future. Just pace the day a little bit better with maybe a break in the afternoon when the sun is hottest with a board game on a towel in the shade. Or a rest after eating. Water will tire the strongest body out. The resistance from the water is quit the work out in my water classes. In the meantime treat the sinus infection. They zap my energy when I am healthy and on top of the GBS they would knock me off my feet. Kids are like puppies they will play till they drop from exhaustion. Now to yell at you! My dear you know we want you to come here and vent because we do understand. We have the same questions as you are asking yourself. But her it goes! There is no such thing as a [B]stupid question[/B] if it is important to you it is important to us you get an answer or at least some suggestions to work through. As far as getting help that sounds like you need to have a family meeting and find out who is more comfortable doing what detail. If no one wants to cut the grass you either cut just a smaller area around the house and cut the field a few times a year. Do only the things that keep your family healthy and safe. The things that matter should get priority. You, your Son and your husband can help with little things to help out your Parents. Don’t try to do this all yourself. This is a family issue and family should help. Find out where you need help from other friends and family and tell them you are NOT able to do those kinds of things. If they do not volunteer, shame on them! Hire someone to come in and help out once in a while. I think it was a great suggestion to have someone that needs to do community service to come in and cut the grass during the Summer and in Winter someone might need to raise money for their band trips and need Winter jobs. There are agencies and Judges that are looking for jobs rather than send someone down to the fire house to polish the fire trucks. Boy Scout troops and Girl Scout troops are always looking for year long projects too. Take a deep breath and don’t let anyone pile all this on you. Watch those glasses of milk and those chocolate chip cookies, they can be habit forming! YUM O! Private Message me if you need to talk!
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Jenn I am not being rude by my next comment. I don’t want you to misunderstand this post. Can you give us the site or source of your information that Guillain Barre Syndrome is a VIRUS? We need to correct some of these sites to contain the right type of information. To my knowledge GBS is not a virus it is your own immune system that gets confused and attacks your own body. Maybe here is a good place to add that it can follow a viral or bacterial infection that causes the immune system to be weak or confused. Thanks for being understanding and let me correct this information before another person reads our typo. You are a valuable member here, keep posting. Feel free to correct any of my posts too! I loose it when I get mad and fly around the room on my broom. I vent when Doctors make those mistakes. With us I try to be more considerate! Thanks!
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I agree with the others that it might be best to move her to another hospital that has doctors that have more experience with GBS. I have the number for Bob, the Liason from the Morgantown area and Bob can give you the name of a good Neuro that he used or knows of. Or another hour from Morgantown is Pittsburgh and I can give you the team of Neuro that treated me. Up here that same team transferred me after my IVIG did not work like they wanted it to. The second hospital is where I got the Plasmaphresis that worked. But it was still a slow recovery. Make sure you get the hosptital that is convenient for your family to travel too also. I agree talk to your Mom…..she is there…..totally aware of what is going on. So far what she has heard has not been possitive. Tell her she WILL get better! Just take longer than we would like. Everyone is different….but she is where I was at that time. Tests can have misleading results. I hope your family gets results on this soon it will be better for all of you.
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He is in my prayers and so is your entire family and his friends. I had a UTI in the hospital and just about get one everytime I have to go into the hospital. They were more worried about me getting pneumonia and I did that too! Fevers are a great indication that his body is trying to fight infection which is really good! You might find that the stress and being afraid during this time might set him back. He body is already doing what it can to heal and then it gets extra things to deal with. That can drain his energy so let him rest! Hang in there and be possitive and patient! About a month ago I got another UTI and my fevers were 105, 104, and 106…..I went to the ER and they even took xrays looking for pneumonia again. It took awhile to get the infection to go away and I took Tylenol and Motrin to keep the fevers to a low grade until the drugs took over completely. Let us know how things are progressing and just ignore his frustration!!
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Good Morning American did a segment on this and it made me think of us right away and I started asking myself questions about GBS and especially CIDP. I hope they keep up with the coverage on this report. I have someone that is in research for MS that is following this for me. I agree with you our vote put them there so they should take that in consideration when making their votes. I think they are missing the big picture on health issues.
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I read the posts and I am as mad as a hornet. I was on life support on day 20 and they were not sure that the Plasma had worked to stop the progression of the attack on my body. They did not even do a nerve test and were not even interested that I did not have any reflexes. I am just so upset that a Doctor would even take away any hope that a family had. Think of how we felt being held in our bodies not being able to comunicate with anyone, but we heard everything and understood it. I hope that this will make her fight this even harder. I am getting in contact with some friends that did not make a quick recovery but are still with us after many years. I am only 22 months from my onset so I am too emotional and want to remove a few parts from this Doctors head, since he is not using them! 😮
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Busy weekend coming up so I have decided not to increase the exercise too much but continue to work on range of motion and stretching and try the rest of this week to pay more attention to my body and see where I need more movement, strenght and where I am having any pain or stiffness. Then I am going to work to work those forgotten areas. I have not been working my shoulder for the injury and noticed I have lost some range of motion. So I have put that on my list of areas not to ignore. It is my left arm and I am right handed so I forget to use it and I don’t want to loose it! My left leg is still weaker than the right so I am going to find more things to increase that strenght too. For now I am going to go back to using the rubber therapy bands in bed and in the chair and wake them up again. After this weekend I will put them in boot camp again! I have gained so much this Summer I want to start planning alternatives for when the Northeaster Winter Days set in I have a plan to keep active. What kind of things are you doing for exercise? We can make a list from A to Z to pick from! Don’t beleive me? A = Aerobics or Aqua exercises. B = Basketball or Ballet 😀
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Erin I agree with Gene about the fog that comes with GBS. Keep an eye on him and don’t argue it gets you no where but hurt feelings. I feel like I am in a fog with the GBS so I can get on the computer and read messages here or the new or play a game to fill my day. Your Dad might not be able to do that. The exhaustion that comes with GBS is dreadful. It is more than being tired. You wake up tired and it gets worse for the rest of the day. I can sit there and day dream about what I need to clean a room or fix dinner and get up to do it and I am exhausted like I just got done doing it. My body wastes so much energy. Maybe you stayed too long and should have given him time to rest. Even if you step outside his room, but are near by, he can rest. Yyou need breaks too. Maybe go out for lunch or do a shopping errand during the day so he can rest. Power naps or Cat naps don’t work for GBS. Rehab wears you out, that might be a good time for you to leave for the day. Maybe his hearing is impared with the GBS also. The periphal nerves also go into the ear and can make it hard to hear or make the hearing very sound sensetive. Also, most important the language comes from the frustration he is feeling. People don’t do well with change and we all have had a sudden change go on in our lives that can make the nicest dog go mad! Have patience and try to bring things in for him to do that he enjoyed before the onset of GBS. He is still in the recovery stages and progression is slower now than every. It takes weeks and months to see changes instead of daily brags happening. Also remember depression is also a part of this process. Try to be possitive about all this because he will get better. Hope this helps. Remember we all have a new respect for our caregivers and could not do this without your support but there are just times you need a break too and need to take care of yourself. 😮 Yes! I just gave you permission to take a day off…your presence will be more appreciated the next day! Goes back to absence makes the heart grow fonder.
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[B]OH BAD KIT[/B] for letting this slip off the charts! We are back and are serious. Now that I have made some really good progress in less fatigue and strenght and stamina I am going to make sure I up my program to fit my ability. I have not done that very much lately and got lazy in some areas. I worked really hard on all the core muscles to get my abs and back and hips stronger. Those rotating ribs were really bad and keeping me back for many exercises. Now I have not had them rotate at all for about a month. I will go thru my Journal and see what I have dropped and see what I can add to my routine. Let you know soon!
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Were you affected above the waist? The nerves have to heal with rest (horizontal) and the muscles need exercise (small movement) to bring back the memory and balance, range of motion and strenght comes back slowly. About work, listen to your body. If you start back to work too soon you might have to work out a short schedule with your boss. You do too much too soon and you will feel it and your residuals will flare up and cause a relapse that will keep you down for a few days. You will learn to pace yourself and rest with the fatigue. Listen to your body and be patient! Wait till you get into rehab before you make a decision….don’t let them work you too long that first few times they probably will not know that and try to rush your recovery not being familiar with GBS. Come here to brag, vent and keep posting to let us know of your progress!
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Jan I know you don’t want to see anyone frustrated but I see that as a good sign. He is feeling well enough to be frustrated. That will also help him fight this thing. As the muscles in the chest get stronger they will be able to clear out the chest which will also help. Does sound like things are progressing in the right direction. Keep in touch and if needed you can send a private message to someone on the board. Contacting someone that understand his position and yours, can calm down some of the worry. I just wish there was something we all could say to remove it completely. We all have good and bad days. That Journal can be just a calendar for you to post the brags or good things. It is very helpful if you extend that to remind everyone what can set off a flare up of residuals. Just watching a long movie or having company that stayed too long or not getting enough sleep because of a storm that kept waking you up can set us back. Just reading the posts can help let you know that you are not the only family effected with this nasty illness and that it effects the whole family and circle of friends. Keep in Touch and let me know if there is anything I can help you with. If it is to only talk or email. I am willing to do that for you! Next level of progress is they feel well enough to start to complain about everything! 😮
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Good thread! I did not have pain in my feet before GBS. After being totally paralized except from the ankles down, I have the usual numbness left from the ankle down but I have some stiffness. I fell like I am wearing a tight sock on my feet. During rehab I did not really have alot of pain to take meds but felt like I was going to break something if I put any more weight on my toes to reach something in the top shelf. Bending my toes under to get up from the floor was very painful. Now after 20 months and that feeling slowly moving out and the stiffness giving in to more range of motion without pain, I am not at 22 months just able to stand up on my own without crawling to the nearest couch or chair to pull myself up on. Makes doing alot of things much easier. I am not having as much electrical shock pain either. I still have alot of swelling in my toes that movement is jerky and deformed like movement. Hard to explain but nothing found like a knot or tumors like you guys have found. I do have a few lumps in the palm of my hand that I am keeping an eye on. As far as my feet. I am probably the only ones that notices that when I stretch my toes up toward the knee they spread out farther than they ever did and all turn out away from the big toe. When I pull the toes up under my feet they are moving weird too to compensate for the swelling. I just think it is weird and I watch them move incorrectly often. I know I am bored and need to get a life. I also have the little donuts around the base of each toe that looks weird too. Swelling is uneven and gets worse when I have a flare up from over doing things. Oh we all need to right a book. I am not even going to mention the weird pattern on the skin that I see. I keep reminding myself that the first things to be effected is the last to heal. Am I that far gone that I have been entertaining myself by wiggling my toes? Now that is funny! Babies do that too! 😮 AM I GETTING YOUNGER?
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Linda becareful. Depending on how your GBS effected your body can be different from the way it effected mine but, I was told in rehab not to go into hot water for two reason. I have alot of inflamation with my GBS and hot water is bad for swelling. The pool were I go is 84 degrees and if I stayed still to chat I got chilled. I had to keep moving at an aerobic pace to stay warm. That was exhausting with the GBS and could have set me back. They gave me a special pass to go into the rehab pool (94) degrees and at first that felt too warm but I did very well in that pool and probably stayed too long just to enjoy the freedom of movement by just floating around. But felt it when I had to come out. Wet noodles for legs! Gravity pushing down slowed me down quit a bit. I would come home and sleep! Hot tub was 104 degrees and it was hard to get in and I could not get used to the heat. Slowly got in and quickly had to get out. I could not breath, I was shaking and vibrating, dizzy and could hardly walk, set off a panic. I can not take hot showers yet either. So be very careful like the others say! Enjoy that trip!
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JennIvy that is great news! Some times things happen so quickly that when they start to slow down we loose our patience. She has a long way to come but working with rehab is a giant step. Eating and breathing on her own now will give her more confidence. Just stuff like that gives you hope and confidence that people that told you that you would get better are actually correct! Keep being possitive. Try some of the exercises they make her do and they are going to be a challenge for the fit family members too! Hang in there! Enjoy your visits! Let us know how things are going. Give her a big hug from us!
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I think all of us have experienced the sleepless nights due to one thing or another. The first places that you experienced residuals like the hands and feet are the last places to heal. Mostly because they are at the end of the longest nerves in your body. I still feel like I am wearing tight rubber gloves all the time and sometimes my hands feel like they are burning from heat and sometimes they fell like they feel like they are burning from cold or frost bite. My feet feel like I am wearing tight socks and sometimes they itch/burn. As you continue to heal the changes in the sensations are amazing that they can change over night. Some have never come back and some return more often than others. I know when I have over done it the numbness travels up my leg toward the knee or to the elbow. Now I think of those as bad days when I am stiff and hurting. I know I have usually over done it. I rest for a few days and I have good days where the tingling is only in the tips of my fingers and out in my toes. I flop back and forth all night to get comfortable. If it is too bad I could take meds for it. Take care of yourself and you will learn what helps you relax. I probably hate the swelling the most of any of my residuals. Stiffness and shoes or clothes that don’t fit right. Keep a journal you might even see a pattern….swelling can be greater when there is a full moon or when you exercise too much or have too much salt in your diet. You will get it figured out!
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Awesome news Jen! Now when you see results it will make you smile. This is actually very exhausting time for the patient and it is very easy to over do it and not realize. She will be able to learn to listen to her body and pace herself. Being able to talk will make times less frustrating now…that will give more energy back to heal the body, unless she is like me and turned into a person that never shut up. When there was no one to talk to I sang or hummmmmed. Could have been that it was around the holidays too! But I now see how a toddler feels. Learning to talk, drink out of a sippy cup and stand and walk! All things we take for granted and brag about as we gain all these things back….one by one! Enjoy your visit! Give her a hug from all of us! 🙂
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Marindee I know what you mean about constantly changing residuals. I am not on any pain meds and I experience all of those residuals you have mentioned right down to the eyes botherng me more some days than others. My symptoms don’t last long enough to get a doctors appoint. I just chalk it up to I have a different sensation than before and I take it as a good sign that things are changing from healing. I try to not look at it as damage but injury. I remember when I was completely paralized and did not feel anything so I like this much better. But that does not mean if I was in really bad pain that I would hesitate to get meds. I just had a problem coming through all this with the right description for each sensation to make someone understand. I once told them in the hospital that I had a pain in my leg and before I could ask for someone to move my leg it felt like a cramp…I was given morphine that knocked me out for that day! That was when I asked for PT to come to my room to work the muscle….I think I called it stiffness rather than pain the next time. Jake from rehab did a nice job of working all the discomfort out until I could get to the rehab facility. So don’t give up….work toward good results and give it time. It does get better! Soon you will laugh at all this when you get frustrated and you will complain and not say your sorry for whinning. I tell them I am not complaining, I am educating them to how I feel so they understand! LOL
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Worried Daughter, Great Advocate! Don’t be afraid to ask questions but remember they can only guess on the timeline he will need since everyone’s recovery is different. He will slowly increase strengh as the nerves heal and the muscle increase in strenght. (slow process~horribly slow) First with GBS there is a mental fog that keeps you from remembering to do things that seem normal routine. For him drinking could be one of them. Getting containers open and handling something even under a pound could be painful and too heavy to control. Does he have a sippie cup with two handles that they can put on his bed table? Some of us have had trouble with the pain in the wrists that feels like carple tunnel and I can tell you it hurts and keeps you awake! Think twice if they want to operate on it. It does get better in a few months as those nerves are less inflamed. Also, having MF might have effected his eye site that pouring water from his pitcher to his glass is difficult. With the feeding tube they should be flushing it several times a day and that is a good way to get fluids into him. Having problems traveling to the bathroom will make a person take in less fluids, resulting in fewer trips but dehydration. As far as swallowing he should be seeing a speech therapist to monitor the swallowing strenght. Remember swallowing, chewing all zap strenght at first until those muscles get stronger. He would be also careful of vomiting so food is not caught in the lung and result in pneumonia. The phelm will continue until the trache is removed. Both the feeding tube and the trache are left in usually longer than usual because a patient can back slide after exercise. They will as a precaution leave them in rather than risk more surgery to put them back in. They can give breathing treatments to break up some of that phlem. Also they can suction him for a plug but they try to let the patient clear those themselves to gain strenght. Once the throat muscles get stronger he will be able to clear his throat too! Even now we all have residuals from doing too much and not listening to our bodies. I am still seeing an Neuro Optomaligest for my eyes. They keep checking the periphal vision and the field of vision. Mine is still getting better 22 months after onset. Sounds like he is doing really good. Stay possitive and remember GBS also stands for [B]G[/B]etting [B]B[/B]etter [B]S[/B]lowly. Hopefully he will be able to post messages here for himself. Please tell him we are thinking about him and his family.
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I agree with the others on waiting until you are absolutely able to drive. It is like walking you might be able to walk there (drive there) but you also have to save enough energy to drive back home! Applying the brake is only part of it….in an emergency reflexes are slower. Holding the brake on at a stop sign or red light can also be a problem. Doing that for awhile might case the muscle to relax and you let up enough to drift into the car in front of you. Since our strenght changes from day to day it is hard to tell if you are able. You don’t want to find out once you have started your trip that you are not able. Rely on friends and family as much as you can…..it is safer. You get into an accident with this you could face legal problems and some charges as nasty as DUI and loose your license. Just like if you were taking seizures. You do not want to get yourself in that situation…it might be only a few more months until you can walk better and that is a sure sign things are getting stronger in the legs, arms and hips and back. All comes down to better safe than sorry!
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Oh I have talked to every member of my family and offer to show them what I can do! LOL I have worked so hard to work every joint and muscle and tendon and ligament. I still have a few to go but this has been a good Summer so far! Even feeling so confident I parked as far as I could from the ER door. Visted my Mom and got her settled. Mini Stroke probably. 🙁 Then after a long day, I walked out to my car! I knew I had to get some exercise some how! Just a good day! Things could have been worse! Thanks for all your support! It is fun to celebrate with friends that understand! Thanks for being there for me!
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Welcome Kristi and Nourdine. I am glad you found this forum and have shared your story with us. I am sorry that you did not have an easy time. GBS is a nasty illness and Doctors don’t know much about it and with that said it is even harder because each case and their response is so different but similar. It sounds like you have recovered extremely well without the best of help. It has alot to do with your will to live and possitive attitude. You have to fight and help your body fight this illness and you were sucessful. You might of already read that GBS also stands for [B]G[/B]etting [B]B[/B]etter [B]S[/B]lowly. You have come a really long way in your recovery and have to remember not to give up! I am still having residuals and dealing with them and gaining ground now. To conquer more independence ask for more OT (Occupational Therapy) and PT (Physical Therapy). Water is a good place to start and just use the water motion to gain strenght and balance and stamina without the fear of falling. Floatation devices can be used also if you are not able to swim or keep your head above the water. Heated water is best, but not a hot tub. Where I go the main aerobic pool is 84 degrees, the rehab pool is 94 and the hot tub is 104. I work out in the rehab pool the most to avoid chills. If I am really moving quickly with a class, I am able to go into the bigger pool for walking and more movement. I have learned that many tiny muscles support us when we walk. Just not the back and abs and leg muscles. You have to be able to work or get all those tiny muscles strong as a machine to get the whole body moving. There are exercises that he can do in bed or in a chair also. Those are the ones I started with before I could walk! Don’t give up it takes time! Your body needs lots of rest to get the nerves to heal. Right now they are not able to talk to the muscles. The muscles need movement to bring back their memory. The muscles eat up energy…..the damaged nerves are leaking that precious energy. So take it slowly! We are here for your support! We have been there and done that! All of us are at different stages in our recovery also! Glad you decided to join the group! 🙂
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Welcome to our forum. I think you will fit right in with this group. Check out some of the threads on photos, Nascar and travel around the world, even if it is just naming names of cities. Having a bad day, let us know! Got a brag let it out! Sounds like you have alot of catching up to do and memories to forget and some new memories to make! 😎
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I was reading a few years ago when I was slowly recovering, on what slowly really means. I read that the sheath of the nerve which was damages grows back a very tiny amount a day…it takes years to completely repair itself. The hands and the feet are at the ends of the longest nerves so they are the last to heal. To say that he will never walk is crazy. Never say never! They are not letting things take a natural course and could actually do more damage to his body. I also would say no to using anything like that at this early point in his healing process. If there is actually nerve damage it will take those nerves time to regenerate and reroute themselves to areas where the nerves were damaged. That also takes a very long time. I agree with the aqua therapy to get those little muscles strenghtened. 22 months after my onset and I find a position I can not get into without discomfort so I work on that tiny area to support those larger muscle groups. Remember you not only are working with muscles and nerves you are working with ligaments and tendons that have tightened durning the illness. Rest for the nerves and exercise for the muscles. Movement in the water and using the water as resistance is enough in most cases to give your body a work out without weight or pressure on those joints. Balance, range of motion and stamina all have to be taken into consideration also. Slow process! UNFORTUNATELY!
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I am glad you are getting help from your family. It is sad that you are having a bad time with your Dad. I know you have to be frustrated. The fact that this does not get better over night or in the matter of a few weeks or months is going to be hard for everyone! Best thing to do is to get on a routine for everyone. Try to stick to it as closely as you can so that your Dad can get plenty of rest IN BED that is when the nerves are able to heal. Being horizontal and long periods of sleep…..not just a nap. As far as him being a baby….he is fragile right now and the damage to the body is keeping him back from his life. Think of what that is doing to his pride, self esteem and how frustrated he has to be. Your frustrated too but his body is not letting him do what he wants too do or thinks he is able of doing. All his priviledges have been taken away like a child. You have to give him some benefit of the doubt and keep possitive. Give him space. Give him time to REST. The fatigue that comes with these illnesses are hard to put into words but maybe telling you my time frame when I first come home will help. I needed to sleep 20 hours out of 24. Not a cat nap…..deep sleep……and then I would wake up and be so tired I struggled to hold my head up because my neck ached and my whole body was sore. My jaw would ache in the middle of a meal, I would stop to rest and my food would get cold. My arms would feel like wet noodles from trying to hold the spoon or sippy cup by both handles and every movement was an effort. A trip to the bathroom was all I could handle and I would have to forget about getting a glass of water for my dry mouth. I felt like I could not get back to bed or the couch. To explain how I felt was exhausting. I could not watch tv or read….I just did not even have the stamina to sit in a chair that long to enjoy a meal or company. Put yourself in his shoes. It is an effort to carry on a conversation….it is hard to get thought together so you get frustrated. HE IS AFRAID this is the end and scared this is the way he is going to be for the rest of his life. It is alot on his mind right now and he is trying to get used to it. Trying to fight with his illness, NOT YOU! After doing exercises I was exhaused….if they gave me too much to do at once I collapsed. I did not want to do that because it kept me in the hospital longer and when at home they had to come to my house and having visitors come several times a day was just too much for my system to handle. Plus the phone calls! Talk to him and your Mother and see if they can come up with a schedule that is good for them. Especially your Dad. If he wants to sleep until after breakfast….make him something when your Mom and you have something and heat it up when he is ready. Breakfast and getting cleaned up might be all he can handle before he has to go back to bed. He might be able to do some exercises before lunch and after lunch go back to bed. He might sleep all afternoon and just eat and watch the news and be ready to go back to bed. You might have to get his exercises in for five minutes each hour to get them all done. That way he can pace himself and will not get tired out. Keep trying to see what works for him. Be patient, walk away if you get frustrated and hang in there. WE need our caregivers but you also have to take time to take care of yourself. Remember to ask for help. Let your Mom do what she can for him also. Don’t take over he jobs. That is what they are comfortable with and try to not change their lives or they will put up a battle! With age comes stubbornness! 😮 Don’t forget to give your parents a hug, sometimes that is what they need the most! 🙂
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Just a quick note to wish you a Happy Birthday! I have no fancy way of posting it in color, fonts or graphics. I am not able to post it in a second language. So all I can do is be considerate and not remind you that it means you are adding one more year to your age and to be glad that you are not a canine they add 7 years to each of our years! 😮
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Hello Marindee and Welcome! I enjoyed reading your posts they are so possitive! You are OneLuckyGirl…..we are OneLuckyGroup to have you join us! :p
Sorry if I have missed any other newbies my hand have been burning lately and I have stayed off the computer thinking that was what was over working them and making them act up! It does not seem to be contributing that much, so I am back to my usual reading and posting! 🙂
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Liz don’t give up! 22 months after onset I am still not able to count on being able to get up by myself if I fall. I have to have a chair or the couch or the wall. Some days it works and some days it does not. One day I was showing someone how I can get up to all fours but am not able to rise up to kneel on my knees without some from of support that has some height to it. Bringing that one knee under me is a problem too. Everyone has a weak side, so make sure you try to do this with one side….take a deep breath and a rest and then another time try the other leg that might be stronger. My ham string are weak but getting stronger. My back muscles still need lots of work and so do my abs. If the abs are weak so is the back…..both areas have to be strong! So I am still working on my Ham Strings, Abs, Back and Hip areas for strenght. It is coming along slowly. Alot of that work was done in the pool so I did not have to worry about falling flat on my face! With less weigh in the water the muscles did not have to be as strong either before I started seeing results. One day trying to show my family what I could not do….I did it and stood up in the middle of the room. Some days I can do it and some I can not. Still need more work to build up that strenght. The pain in the foot did just recently go away so I don’t worry about breaking something in my foot now, since I don’t have that stiffness in the ankle and have more range of motion. My feet are doing better than my hands. For the most part they are constantly burning. When my feet start to relapse I ask for a massage and work them. That is so far what is working for me. You just have to find what works for you. That is why you can not give up! I think it is great that your rehab people work with you so you can see what you are able to do and now they know what to work toward. We are all behind your success! Keep up the good work!
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With the GBS and the residuals acting up I can usually think back to what I did the day before and know if I over did it. A morning out with the girls, too many errands planned for one day or new exercise class or rehab instructor used to set me back. Coming up on 22 months and I still have a few bad days after a really busy weekend. But like someone said rest will pick you right back up in a few days! Hope this helps a little. I have learned to listen to my body when out on errands or on the town. I end the trip with a quick retreat home. It is frustrating but I know when my body had has enough. It is better that way than having to rest for a few days to regain my strenght and stamina and deal with residuals.
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I am sorry to hear your husband has had a stroke to add complications to another medical condition. Just keep things possitive you can see just moving to a different room with just about the same care has given him so much hope. I don’t think they have given him much hope in rehab but that can definately change for the better too. What do they know at this point will happen he has a long recovery from GBS and will get better….it is not like a stroke that is a shorter period of time before they have an idea what has been effected. Some of the residuals they are seeing are from the GBS and will take longer to heal. Don’t let him give up and also don’t you give up! He is really in the early stages of all this. He needs to have hope and don’t let them take that away from him. Depression is part of the recovery of GBS that is all common and meds can be given along with verbal help to understand. Make a big deal out of any progress! He will be worn out from the fatigue from GBS. They will have to work him in rehab to over come what damage has been done by the stroke and he will have to relearn to do many things from both illnesses. They will have to watch him to make sure they don’t exhaust him and make the GBS kick back up, but also they have to learn now much rehab he can take with the stroke to make any gains. Gains from the stroke might be also compromised by the GBS because the muscle is not getting the message thru the nerve…that movement will help with the memory of the muscle. Once the sheath of the nerve heals he will get more and more of his movement back from the GBS….with a stroke they would have stopped with rehab much quicker thinking it was permanent damage. I hope this has made sense and it has helped. He will get much better from the GBS! I seen my husband come back quickly from a stroke and he has watched me struggle with the GBS. We now have grown closer as a couple. More patient with each other! Don’t forget age is tapping at the door and telling us to slow down too. Some of those younger people on here bounced back quicker. Take all conditions into consideration! Tell him to enjoy the journey…we have learned to listen to our bodies and end up learning more about our bodies thru this whole process. Start by working those face mucles and flash each other a smile…..it will mean so much to both of you! 🙂
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Jenn your right there is no normal but I can tell you that being off the vent is a great huge step….the trache is frustrating but she sounds like she is doing great and they are smart to be careful and not be in a hurry. I had my trache in until it was almost time to come home. They said some people can go home with them even if they are not being used. What they try to do is make sure once you go into rehab and are moving around and exercising you don’t have a relapse with more exercise. They don’t want to have to put in another one. Once she gets breathing treatments and exercises for breathing and she gets stronger they should depending on the trache she has. They can put a valve on it so she will be able to talk. Sounds to me she is in the slow process of being weanned off. She is getting better slowly. The caregivers are the ones that need to be given a shot of patience, because this is a slow process. You are expressing your frustration on this message board and getting out the frustrations that all our caregivers go thru. You are helping them that are just coming into this process. Others will share with you how frustrating it is as a caregiver and not being able to help quicken her recovery. Hang in there and be patient we know what your family is going thru. Think how frustrating it is for her to not be able to tell someone where it itches or hurts or is numb. How to call out to someone that she needs something. Not being able to speak and have everyone read your lips is horrible. First you have to get people to look at you! Alot of people and staff in the hospital are not able to read lips. Think about her frustrations and it makes your seem very tiny! BIG HUGS….vent here anytime!
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Gabe it really does not matter the degree you are recovering from it is that you are recovering. Think possitive and it really helps. Challenge yourself by thinking of things you can test yourself to do. If you find a tiny muscle that is not working….ask PT or OT to help you get that working correctly. Knowing how the body works and what yours was capible of doing before GBS is going to be a great assest in your recover. It will not make it quicker it will just make sure that you get help where you need it. When you are months and years out of rehab and you remember some of what they drilled into you and you catch yourself not taking a step the correct way or holding your hand up like a puppy paw like a stroke patient or grabbing a wall for support or walking with your head down and not looking up….a little voice will come into your head telling you…..watch that posture! Pick up those feet higher and take bigger steps.
Don’t throw out your cane you might need it years from now if you are tired. Bigger stores have those scooters…take advantage of them…..as far as the handicapped parking…..going into the store it is not bad….it is walking out after being exhausted and trying to get into your car….not having to walk very far is a blessing. Get one! Can not find a way to approach something possitively….come here for support…..we are hear to listen and learn too!
Humor is a great way to begin….if you can not laugh at yourself….we will! Just kidding….we will understand! Been there done that!
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This is one of my favorite threads! I have not posted lately so here it goes.
Ohiopyle, Fayette County , Pennsylvania 8.3 miles below the Dam on the Youghany River. Right below the falls there is a very popular site to start a white river raft trip. I recommend it and while in the area go tour Fallingwater built by Frank Lloyd Wright. This area is one of my favorite areas to visit. 😎 History buffs will enjoy Fort Necessity too!
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Terry you have our respect as a care giver and all that you have done for this wonderful person. She will rest in peace now and will be in your hearts forever. I hope this helps in a little way to let you know how much this whole group loves our caregivers that keep us glued together. Thank you so much for your posts that helped us know thru this online group just how wonderful your lives together was. 🙂
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Donna/Brandy I am glad you posted to let us know your heart is heavy yet once more. You know you can count on this group to help you heal and remember all the wonderful times you had while these people were alive. You have the job of telling us how special they all have been and in doing that we share your loss with the memory of special people we have lost too! Thanks for the memories no matter how tragic, they have helped me remember fondly people I have lost to car accidents. We all have faced this more than once and have come thru….it is nice to have someone to share with that understands. Group Hug!! 🙂
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“I think there’s a big shock factor that comes with losing so much so quickly.” I think this is a big part of this. Life come at us so fast and recovery is so slow. FRUSTRATING to say the least.
To add to that factor of GBS aging us about ten years. At this age group the hormones are starting to let our bodies change and with that we are doubling up on some of the residuals. Decrease of stamina and strenght, foggy brains or senior moments. I have a tendancy to blame alot of this kind of thing on the GBS but also I try to remember that most of what GBS slammed me into my friends are also experiencing with the change in their hormones. Not to mention my hormones are up and down and non exsistant.
It is hard when given lemons to always make lemonade. So come up with new recipes as our lives change. I have put more emphasis on hobbies I had on the back burner and just look at life a little different now. I have lost many friends since becoming ill but the big shock is how much family members think of me as healed since I don’t have any residuals that rear their ugly head. My husband has become my best friend and my best support. Our caregivers hang in there for the full war, just not the first few battles. He can tell that I am tired and suggests we go home. I know he sees my fatigue before I start to feel it. I have tried to keep a very possitive attitude and he has adopted that too. It has been a nice change in our lives that we have been willing to make changes for each other. 😀
I do understand that most don’t have that kind of support at home and it is sometimes not the best of places to find someone to discuss problems. I would always tell people to seek help from professionals when it is depression or confusion. Always a good idea to get it worked out so it does not consume our lives. There is no humiliation in seeking education!
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As far as recovery, I am at 21 months and still seeing improvements. They are not a day to day thing now like right after onset. They are bi weekly and monthly improvements. Just over this Summer I have had a decrease in drooling from the corners of my mouth. I did not even notice it till someone mentioned they were having that problem and I notice I had not had that problem for over a month. Someone else mentioned the electrical shocks and I thought back I had not had them for over two weeks. WOW now it has been over two months since I had those kinds of pain. I have not had to take any meds for pain. I have had some but it is constantly changing from type to type and stopping and starting between Doctor appointments that I just go with the flow. Figure they are all part of the frustrating process of getting better slowly. Lately I have the burning in my hands that feels like they are on fire. Before I had the kind of burning like my feet were itching and were burning from cold or frost bite. I still have the tight sock or balloons on my feet and the swelling in the ankles and toes and for that matter the legs and feet. It changes daily as I move and exercise. Even the tight feelings in my throat around where the vent and trache was is not as tender and prone to muscle spasms. The fact that my residuals have been ever changing keeps me going. I have good days and bad days. Energy and stamina are still a problem. Just lately the tightness in my wrists, ankles and toes have given in to more range of motion and that has made life more comfortable. I have always exercises and did not give up on an exercise helping an area. Some areas are under the control of the GBS and finally have improved. Back and Abs are still being stubborn. Not from the lask of exercise but I think it just takes time for the nerves that manage those areas to fully heal and start to respond. Hang in there and eat properly and exercise. Keeping those areas moving pays off. 😎
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GREAT NEWS! Now is the slow process of getting better at home. Make sure he gets plenty of rest! That is the key and make sure your family takes care of themselves. It will be very difficult at first but it is important that you get him on a routine and everyone participates in his recovery. We will have many needs and don’t let that be things that just your Mom has to do. Pitch in and take some of the work load from your Mom. Our caregivers are very important to all of us and I have to admit mine are still doing alot for me. I slowly keep doing things on my own and if I do too much I have to back off and rest the next few days so make sure he listens to his body. Therapy will work with him and develop a routine that will go with his ability. Healing the nerves take rest…..helping the strenght in the muscles takes exercise. It is something that you can not rush!
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OH I LOVE BRAGS! EMILY HAS DONE SO WELL! Only one more case that proves that it just takes time and the right combo of meds to keep us comfortable while the body heals. I am glad that Emily is enjoying life. This is starting out to be a great Summer for me. I am able to do more around the yard and with my flowers. Last Summer all I had was pictures of flowers to look at that Ken posted. This year I am getting to see the flowers as they bloom. Keep up the good work Emily! Kelly thanks for making this day a bright one for me! I know I will be thinking of Emilly all day!
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Please try to enjoy this pregancy and don’t worry about stuff you are not able to control. STRESS can be more of a trigger that would make you have a residual kick up. You need to take care of yourself and get rest. GBS can cause fatigue and so can having a child. You need to talk to your doctor about any vacinations and your concerns with your doctors. Autoimmune diseases do run in families and keeping GBS in your childs familly history on his or her medical chart will be a good idea. Focus on a healthy baby and the delite they give to their parents! Memories of GBS will fade as you watch your child grow! Take lots of photographs!
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First check with the hospital or her doctors to see if they write a prescription for one if it is not covered by her insurance. I don’t know how they handle that in Canada. Mine would have been covered if I needed one. Other insurance plans pay a portion of the cost. There are some agencies that will also cover all or some of the expenses. It is worth checking into. Also, check for one that is used.
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I gave this thread some thought and this is what I come up with. Not much but might start everyone thinking! As far as comfort and to be used for a longer period of time why traveling or shopping the feet can be put into different heights for comfort and also the back of some chairs they recline. the Scooters are not made for longer periods of time and are not as adjustable. Just a thought….not sure about the lenght of the batteries and the cost of the batteries if they would have to be replaced. There are also more attachments made for the wheel chairs than the scooters. Hard when you don’t know a person personally. Also stores do provide handicapped assistance and will get a wheel chair out of your car. Atleast they do around here. Take care! Take your time making up your mind!
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Schel> You should not get stressed or over worked you have to listen to your body! So vent all you want that relieves stress too! We all have been there at one time or another and we look well on the outside it is hard to tell that we are even ill. My family has just learned to listen to me about how I feel. Friends have a hard time dealing with my fatigue. They don’t understand how one minute I am happy and have lots of energy and the next I am not tired I am exhausted and have to go sit down. I can not do the things like we used to so. “Shop till I drop” does not take me very long at all. Forget the mall! One store and lunch and I am ready to come home! You know we will be there for you! Don’t feel bad about venting…remember it is a stress reducer! 😀
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Karen that is a what I was referring to. Feels like a knife, takes your breath away….you don’t want to move, but that is what you have to do. Stretch in the opposite direction or reach for the sky, take a few deep breaths and relax that area. Hard to do eh? Hope we all get stronger to end these pains.
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Sherry, Belated HAPPY BIRTHDAY OR IS THAT CRASH DAY? I think I will skip that kind of ride on my Birthday next year. I am glad you are acting your age and having fun! If you want a ride in a race car next year let me know! We go to the races each Friday to support my Brother in his hobby. He has had some really bad crashes, but can now can talk about being life flighted from the track, which he does not remember. He has not been able to laugh about them yet but that will come! We have laughed about our great trips on the snowmobiles. If you want to try that next birthday we need to find a place that has snow in June! From now on don’t have normal birthdays! How about a ride on a wave runner?
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Also until you get the results try breathing exercises. Yoga and meditational tapes are good to follow for the breathing they are slow and relaxing. It could be that you still have some smaller muscle groups that are weak like the diaphram and the muscles and tendons and ligaments around the ribs. Do you every have any problem with a rib rotating and causing pain? That is the result of weak muscles and tendons and ligaments that hold those areas in the correct alignment. It is hard because we all tend to blame everything on the GBS.. Never ignore any pain or discomfort they need to be reported to your Doctor. Be patient and hang in there!
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Everyone is right! REST is so very important. Power naps don’t work and neither does cat naps. We are talking a few hours for a nap. When I was in the first part of my rehab I was doing great but they watched how much they did and on other days they worked on other areas not to over work me. Little was done for Occupational Therapy and some was done to envolved the Physical Therapy. Just chewing my food tired me out and I wanted to fall asleep while eating a soft breakfast and drinking. They worked me early in the morning and maybe got me out of bed in the afternoon. If I was going for a test that morning or afternoon they skipped that visit. They were always doing exercises in the bed that helped me to learn to roll over and get some strenght back so I was able to push the call button for the nurse. It takes a long time for those things to all come back. I got visitors just at night that way I got plenty of rest between the PT/OT and meals. The Bath and changing the sheets took alot out of me. I tried to eat first and I could fall asleep during my bath if I got tired. After I was transferred to the rehab floor it was all I could do to get enough rest. I got read for my day and did rehab in the bed before breakfast. then after breakfast they would get me dressed and take me to rehab and bring me back and tell me to nap till lunch and then rest after lunch till they come to take me back to rehab. Before dinner I took another long nap before my meal come and then tried to stay awake for my visitors. Twice a week I had my best friend come in for the full day and she read a chapter out of a book to me that was a comedy. Either arranged for someone to come in and do my hair or she would wash my hair. It was not washed for over a month in a half and they just used the powder shampoo before that combined with the oil turned that into cookie dough. My friends visits were always great she would let me sleep and would read or watch tv or go to the cafeteria while I rested. Those visits gave me something to look forward to and also to make my weeks go fast. She even made sure she visited over each Holiday I was in there to make them special. Those days I felt really relaxed and rested….it was like a day out with the girls. She was also good at asking just the right questions when the Doctor and nurses come in. She was a great assest to my caregivers! Hubby and Son had too much to handle while I was in the hospital for 9 weeks. She kept them all informed so that the same questions were not asked each day. Those wore me out! I could start a sentence and she would finish it! She was the one that caught them giving me Morphine instead of a pain pill as I had requested. I had night terrors from the Morphine like her husband had and she was able to talk it over with me and alert them to what was happening.
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Cheryl the photos were great! I need to get a camera and should ask you what kind you have before I purchase one. Are those photos taken with a digital camera? Come visit our zoo here we have the new Polar Bear tank where you walk thru the clear tube and they swim above you. Also two of our Elephants are prego! Great pictures! Makes me want to visit the zoo!
Hello Everyone!
Hello Everyone!
I can tell you being a person with GBS reading your posts I take alot away from them. Good advice and makes me feel better knowing I have learned so much from your messages. I too can let the “POOR KIT” Days take over, but then I come here and see how all of you manage to listen to your bodies, talk to your Doctors and others with CIDP and get the best results by listening to your own bodies.
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[B]Great quotes from this message thread I have gained to guide my life today![/B]
[*]Without the support from this group, I dont know where I’d be.
[*]Postive thinking is more powerful that you could ever imagine.
[*]I’m learning to take it one day at a time
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Thank you all for some good wisdom to take me thur this next week of my Journey. This will be put in my Journal to keep me thinking of everyone here! Great bunch that know what it is to be family! Thanks for sharing!
Hello Everyone!
Linda, First you have a lot going on right now and it is very hard for us to figure out what is causing the residuals or side effects. Don’t be so hard on yourself. Many of the problems you have mentioned are common to GBS and CIDP. But I hate to lump them into that catagory because they get overlooked and should be mentioned to the Doctor. To save time print out your message here. Hand it to the Doctor to read. It is well written and says it all. Most of this is a blessing you are able to pick up on changes in your body and have listened to your body. You just have not given that burden to your Doctor to determine which symptoms are the ones to worry about. No wonder why we are not able to concentrate on things we like like reading and social life….our lifestyles have changed and our minds are racing a million miles a minute. Try and read just a page at one sitting rather than give your day dreaming time to take over your reading time. That way you don’t have to give up your reading time you just spread it over the day! Take that time to take deep breaths and exhale! This is YOU time! Think of yourself….write down in a Journal how you feel and what you have been thinking about. If only by words and not sentences. Then close your Journal and take time, grab that time for you! Read that page in that book or magazine you wanted to read. I read two pages that way I can move the book mark forward to the next pages. I two lost my business due to GBS so I know where those thoughts are coming from. It was not your fault and take those thoughts and move on! I take time each day to clear out the depression and anxiety from that and let go of the stress. Bigger things will come out of that experience. It is not you that failed! It is our health that got compromised. Nothing we had control over, so don’t let it control you! You are with friends here and family that totally understand. I wish you well on your progress and enjoy the journey! I have found that I like to look at pictures rather than read at times. Take time to look at some of the photos that Ken L has posted to this site. I use them as backgrounds on my computer desktop. There are some that I would really like to print out and use for photos around my house. Places I have been and places I would like to visit! Look toward your future and remember depression is part of this process of changes. You are in control and should mention that to your Doctor. If you need a phone call from a friend send me a Private Message and I can call and talk. Take care!
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VMac I have learned one big lesson from your post. Don’t blame everything on GBS and ignore it. Better to be safe than sorry and go to the Doctors. I think it is because we have learned to listen to our bodies for so long with the GBS we can catch things much quicker. Hope things get better for you, soon. Take care and be well!
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sylvia’85 I like to think we are a very special bunch! To understand this health problem and pass on our experiences. Look for someone with similar symtoms is just a relieve. Yep we are weird!! I laugh all the time trying to explain what and how I am feeling. I agree with the residuals are worse when I am tired. My personal alarm that tells me I am over doing it! I have to say that the vibrating has decreased alot just since January of this year. I am able to do so much more and the fatigue is less too. I think all that vibrating used up so much energy. Today I am having a good day! Only tips of fingers and toes have that funny feeling to them and swelling is down some today also. Even took the dog for a walk today! Thanks for sharing information, hope it helps others see there are more good days ahead than bad ones!
Happy Father’s Day, Guys!
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Sylvia> I am like you, I had the needles and pins and numb feet and hands, zaps and zings and recently the burning and now feels like an electric current running thru my hands. If I touch peoples faces they say it feels like touching a water pipe with water that is quickly running thru it! I have never had to take any pain meds either……I do have back pain but I get that if I do too much or stand too long in one place. Muscle pain the Motrin has helped me. I injured my shoulder in the hospital after I fell. Staffed picked me up by my arms. That took 8 months to heal. Even now I can feel it. But I am slowly getting better. Did you get the vibrating in the muscles? They flutter or idol like a car engine. Mine is strong enough I can not feel my cell phone when it is on vibrate. It just blends in with my body vibrating. Take care of yourself.
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Hello Everyone!
JennIvy I am sorry that you are not close to your Mom that is very hard for you to see how she is doing. REST is what she needs now and I agree with them doing the IVIG first and then if that is not working, why even wait this long. I had my IVIG that first week for 5x and then they did not see the response they wanted they did the PP during that 2nd week for 5x. It was not until the 3rd or really the 4th week I started to really feel improvements. Don’t be surprised if she gets a little worse before she gets better. I did not have any type of rehab started until the end of my 4th week. I was in the hospital for 9 weeks and that was quick compaired to some of the other people here that were in longer. Be patient! I did not come home until I could walk with LOTS of help from a walker and had an escort to the bathroom. It took a long time after that before I was comfortable to do a few steps or walk without my cane. The swelling is common when you are not moving and because of the pain, massage or using any machines to work the fluid up the legs out of the lump glands she might see swelling there too. Remember at this stage the muscle atrophy is expected and the nerves are not getting the correct message thru the nerves…..it is leaking out and wasting energy. Read as much as you can and when you talk assure her that she will get better slowly. Depression is a major part of this too and they may treat her for that if you can not keep her attitude possitive. Right now the fatigue is terrible. I can remember not wanting to talk or visit with people for very long period of time….I could not help it, my eyes would start to droop just listening to them talk. Later when I was put on soft foods my jaw was so tired of chewing I would rest in the middle of eating an egg or applesause. Sipping a cup of tea was also tiring. At first I could not hold the cup to my lips and then slowly they provided me with aids that helped me. By Thanksgiving I was trying to hold a child’s sippy cup that had two handles. I was not able to lift it or hold it even steady. This was at a later date maybe my 5th or 6th week in the hospital after I got out of ICU. Keep coming back we really care about your Mom and am glad she has caregivers that care and an Advocate like you! She can be very proud of her daughter.
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What a great brag to share! These are the kinds of stories we need to read more often. Usually when people get better and more active they forget to come back and tell us how they are doing! IMPRESSIVE! Congratulations! Mom you did a great job as caregiver. You made it happen! Made that road to recovery a pleasant one! Nice Job!
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Stacey I would ask for PT for sure you, if you are still having problems. If you still have problems with your hands and doing tasks that you used to do before with out any problem I would say you might want to get OT also. They will be able to work with you over a few weeks and watch your progress as they give you hints on what to watch for. Sometimes it is mind over matter and you just are not concentrating like you should be. You might be taking too long of a stride or too tiny of a step. I like to take a cane when I know I might have to wait in line or I have to walk farther than usual and I know I might get tired. For example, a mall where there is no shopping carts or where there is going to be steps with no railing and I am by myself. Rehab can also see if you need to get the AFO but does not sound like you would be using them very long! Keep up the good work!
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OH good time to vent let me let a few things fly! I want to add that I love my New Balance shoes too. I need a new pair! About not having sea legs after a ride in the boat is normal the dock seens to be moving way from you in slow motion. I would hold on to someone for dear life then. After riding in the car I am stiff from the constant giggling in my seat from the rough ride of our 4 x 4. OK, I am not giving up my 4 x 4 just like someone said they were not giving up their sandles. WE all have to vent and complain but when it comes to some principals we just have to stand firm and not give in to our stubbornness. I did have lots of problems with the sounds and was stubborn enough to learn not to stand under the steeple at noon when the church bells announced the time, the vibration was horrible and I just froze. That was the first time I had left my cane in the truck. Talk about embarrasses. I also had a episode in the pits when a car goosed the pedal just as he come around a bend. My toes launched me 6 inches into the air as my shoulders covered my ears and my head looked like a turtle. I bet that guy is still wondering what I was doing. It was all reflexes and talke about walking in sunglasses! I wanted to hide! I was wishing I had worn a knitted hat and could have pulled it down over my body and feet! That all happened last year and the vibrating from noise or movement has actually gotten better. IT will also disappear and I don’t realize it til I might over do it and it comes back. Another sign of getting better slowly! Have a great Summer!
About 3 or 4 months ago I have had trouble with my neck cramping from the breast bone I can feel it start to pull and it stops me from doing anything. It goes clear up under my tongue and make it feel like it is swelling and pushing up against the roof of my mouth. It has only happened 4 times on the right side and twice on the left. Now I don’t panic I know I am not having a seizure and that I can breath thru my nose. I talk myself into relaxing and it goes away. I have not had the numb tongue since I was admitted to the hospital that lost the ability to swallow as my systems shut down. Drinking cold things make my tongue feel like it had needles and pins. It is a weird feeling. I hope it goes away for you….ask your Neuro too. I make a list so I don’t forget any of my questions.
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I still have some residuals and I keep working on them. The hands and feet are still bad but I don’t have the pain that others have had. I still have bad days and good days. For instance with the hands and feet sometimes the hands are numb up to the wrist….other days they are just in the tips of the fingers….those are good days. Usually when the hands are having a good day the feet are too. Just the toes feel funny. Some days I feel like I am wearing very tight socks. Especially when I am getting into the shower I double check to make sure I don’t have slippers on my feet. When I stop having good days and bad days and don’t see any progress for months then I would say I am slowing down, but from what I have read others gain things back after a year or so. Takes time for the nerve sheath to heal and then the nerve damage to repair and regrow if any damage was done there. I hope your Mom has many good days now! As the caregiver you can relax more too! We love our caregivers this much! ((((((((HUGS))))))))))
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Congratulations…..make sure you still listen to your body and don’t over do it. Rest when you can! When I over do it the tingling moves up past my wrist and my ankles. I make sure I rest. If I was to do any knitting or crocheting my hands burn. Especially after an evening of typing on the message boards. I am glad you are doing SO WELL! Take care of yourself.
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I have the fatigue and have pretty much learned to pace myself. But if I stand for too long at the store reading a lable or stand in the checkout line too long I really notice my back starts to really hurt. Doing my exercises at first in the rehab pool after being instructions on how to do them correctly on the table. That helped my back alot. The strenght is coming slowly back in to my shoulders, legs and the back, hips and abs are the last to come back. I still have some numbness in the pelvis area and am just able to feel those muscles actually working and tightening. Before I did the exercises but they just did not feel strong, now I can actually fell them working. Just like in the “bridge” I am able to raise off the floor higher. Able to stand and get up in the middle of the room without the help of furniture. Yoga has really worked all areas and caught the areas that needed rehab done on them to strenghten them. I have combined all my exercise teams to work toward balance, strength, range of motion and staminia is coming back slowly. Breathing and getting the oxygen to those muscles seems to be just an easy thing but I actually had to work hard for lung capisity to go under water and be able to work out without stopping. Been a long haul but things are finally coming together. Keep up the good work and don’t give up! Stay possitive! Singing and dancing are great for you too. Most of our favorite songs only last for 3 minutes. 3 minutes here and 3 minutes there adds up over a week!
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Keep in close touch with your neuro and therapist. I think it is great that you have come back to quickly but I think you are feeling the effects of doing too much too soon and just might put yourself in to a big relapse. Listen to your body and get rest. That is what the nerves need to heal and exercise is what the muscles need to get stronger. GBS also stands for [B]G[/B]etting [B]B[/B]etter [B]S[/B]lowly! By listening to your body you will learn to pace yourself.
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Great news your Mom is able to come home I know people that were in the hospital much longer….longer than 6 months! At the hospital she got no rest, so as caregivers that is your responsibility now to make sure she is able to get as much sleep as she needs. Slow progress on the exercise and the muscles now. It is important that you give it time to heal the sheath of the nerves so the nerves can carry correct signals to the muscles. Keep things possitive and you will see progress. It might be slower that we would like but don’t look at every day…..look at the progress over two weeks or a month. That is the true progress! Please tell her we are here when she is ready or has a questions.. There will be many weird feelings over the new few years!
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Before I get tired here I am going to try and add to this. I have GBS so those of you with CIDP can not claim this all for yourselves. I am seeing improvement!
* Watching a movie when I first come home from hospital would last 10 minutes….now I can watch the whole thing. This is also why they invented the DVD! Stop….start….stop….start…..rewind!
* Reading a book……ever hear of condensed versions or books on CD? All these inventions have been made for us!
* I had his title changed from hubby to Chauffer I am just starting to drive more and more and longer distances. I actually like the idea of having a buddy to go shopping with. Friends don’t help you carry purchases into the house and put them away! Also, very seldom do my friends offer to pay for my shopping spree! What am I talking about it is groceries! 😮 Never before did I enjoy going shopping and buying groceries! I can not tell you the last time I read a store flyer for their next sale items. I have turned into my dog and am out the door when anyone says “Want to go for a ride?”
Guess it can be very depressing if you let it be. It is a fog, brain fart or gbs or cidp moment! I have to admit to combat this I have a Journal and I write down what I want to really get done that day……I give myself a week to get it done. I have become a farmer….watching the corn grow. I see that weed, the next day I see it has become taller, the end of the week it has roots that have reached China. I actually have been making it harder on myself, but I don’t have the concentration to respond to a thought. Hang in there, it does seem to get better! Now make a note for yourself to buy a Daily Journal! At first treat it with humor, it is still is there later mention it to the Doctor. That is the only way they learn what else comes with GBS and CIDP is when we mention it to them.
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Hugs mean so much to everyone! I am glad you shared. I had a family member that has a bad reaction to meds about a year ago. He did not recognize anyone in the family. He did not know his name, he thought it was something else. He was only 50ish and become very much like a person would be if they had a stroke. Could not walk….it was scarey! Now things are better within just a couple of days the Doctors got the meds out of his system. Hope all works out for your family quickly, like it did for our family!
Now if onlly I could post a cute picture here! [B](((((AJR)))))[/B]
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JennIvy I had the IVIG the first week and the Doctors did not think that it was working for me and I was getting worse so they transferred me to another hospital where they could do the PP. They were not concerned with the PP wiping out the IVIG. Then I was still paralized for another two weeks before the illness started to reverse so I could move a tiny bit. They are sure right about GBS also means [B]G[/B]etting [B]B[/B]etter [B]S[/B]lowly. Be patient and be her long distance advocate. She will need lots of rest. They will slowly get her to start moving fingers and toes and hands and feet and then arms and legs. It comes back slowly. I have a new friend that is doing very well with her recover and she is also older like your Mom. Make sure she gets OT and PT in Rehab that is important. I was in the hospital for 9 weeks and that was considered to be a quick time. I come home to home nurses and OT and PT until I could attend rehab in a facility near my home. It has been awhile and I am still slowly working on getting my strenght back. Keep her thinking possitive and tell her we are thinking about her! Nice booklet available from gbsfi for care givers that you can read and know what questions to ask.
Hello Everyone!
Hello Everyone!
I had GBS but had the vent float on me twice and then the trache fail and had to have another one put in. I had a terrible cough the whole time I was in the hospital and I always talked with a strained voice. After my lung colasped I found it hard to finish a sentence, I ran out of air. I would choke on my own saliva and at times felt like I was going to pass out from not being able to catch my breath. I even went thru a very long list of words to find out I was not able to say some words. I would try and clear my throat in the hospital and at home but never could make a difference. Now I can say words, sing off tune which I can not blame on the GBS and still cough and choke on my drainage from the back of my throat or sinus. I can feel a thick substance in my vocal cords that will not move like a dryer unusual phlegm. I have mentioned it to every Doctor and finally my GP said to go see another ENT specialist. I hope the scope shows something.
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The more I read the messages, I have begun to feel very lucky and well cared for while in the hospital for those 9 weeks. My team of specialists worked together and twice while I was in the hospital I was seen by the Neuro-Opthamologist and am continueing to see him for my eyes. I was tested every two weeks for a few months and then once a month. Now I am up to every 6 months. Alot of improvements have been made and the biggest one was the pressure in the eyeball that was accompanied by hemoraging in the eye which blanked out my vision and made walking and exercising and eating and watching tv and identifing people very hard if not impossible. I still have alot of salt in my tears. My eyes do get tired and droop toward the end of a movie or a party or visit. My husband also uses them to tell him when it is time to take me home rather than his watch. Even now I still have some swelling of the Optic Nerve. Now I just have some vision to the side that is messed up and catches light differently to provide flashes to the sides. I am also light sensetive but dark glasses and a ball cap with a long bill really helps. I don’t use the eye drops or goop any more. I seem to have more natural tears working now. I can remember when I would cry and no tears would flow. My tear ducts seemed to be paralized too! Now my eyes focus together and I don’t see double images. I can read better than ever and see farther than I could before. For me that is one thing that has improved to better than it was before GBS. Neuro-Opthamologist might be more appropriate for someone with GBS and under a Neuro care. Makes more sense to me!
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I just admire the clever people on the net that can do stuff like that. I need to start playing with programs I have and make me something too. Now if I can only get some good pictures! Santa how about a digital camera in July? Hubby got his stainless BBQ grill, we are eating some very interesting meals around here! Hmmmmmm how do you get the fish and birds and cat and dogs in the same photo? I will work on that while I am waiting for the camera! :rolleyes:
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Rachel I don’t have anything to add to what everyone has posted. It will be interesting to follow up with a WHAT NEXT, DOC? I don’t have any of the problems you have mentions so I just wanted to let you know I have read your posts and I am glad you have become a part of our message board family. I am glad that you got your appointment moved up. Listen to your body and get well!
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Hi Chris and Welcome!
I think you will see many that have been in the same situation as you are in now. The cramps have been common. Stretching, nutrition and rest all will play a part with the cramps. Some of the suggestions you might laugh at but putting a bar of Irish Spring Soap under the covers near your feet have been suggested and also rubbing Vicks Vapo Rub on that area. Some have had good results with different types of mineral waters or Qunine Water which they added flavoring to so it was not too unpleasant of a taste. I am sure there will be others to post and give you some of the details.
If you are having pain after PT discuss this with them. They can change off to other exercises and lessen the amount you do at each time. Also water therapy in a heated pool (94) might help with the cramps and also putting weight on those weak muscles until the tendons and ligaments stretch. If the pain does not stop then it might be necessary to talk to your Neuro. You will learn to speak up and ask more questions. That is what they are there for and so are we! Congratulations on the speedy recovery but make sure you get rest that is what the nerves need to heal. The muscles need the motion. Listen to your body.
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I know how hard it is to see some one slide backwards even a little step. My Doctors did not feel the IVIG worked for me and they transferred me to another hospital that could adminster the Plasma Pheresis. I also got pneumonia about 5 weeks into my treatments. I was in the hospital for 9 weeks and had the trache still in until after Christmas. They said I might have to go home with the trache. I am glad that did not happen. They were not in a hurry to take it out they wanted to leave it in until they could see how I responded to exercise. I know it is hard to keep everyone thinking possitive but hand in there. You will find that everyone’s case is so different but we all are extremely closely related too. We are thinking of your family and hope you will come back here to let your extended family know how he is doing.
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I love this group! They are so patient and wise and give the best advice. I will only add be possitive and don’t let stress cause a flare up. Enjoy today! Plan for tomorrow and try to follow those plans! This time last year I was not able to do much…..today I am albe to do so much……I amaze myself and surprise others with how far I have come. When I feel good I plant a seed, so that when I have a bad day I will have flowers! Too bad Chocolate does not grow on trees around here or I would have an orchard and share with all of you!
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Hello Everyone!
Suzanne you can see you have received a big group hug from this group. We know what it is like when a pet leaves foot prints on your heart. Since I have been home from the hospital I have lost two of my dogs. One my Yorkie Tyler from old age about two months after I got out of the hospital. then this Spring I also had to put down Coach my 9 year old German Shepherd Dog. As times goes on and your heart heals you memory will regain those better days when we had such great days with our pets. Remembering them during those times will help that healing process. Big Hug and get your rest…..you need to think of yourself also. The tears will soon change from sorrow to tears of joy as your thoughts change. Their memory will always touch our hearts. Have you been to the site called the Rainbow Bridge….their is a great poem there that needs a box of Kleenex to get thru it but it really helps to see you are not the only one that has lost a great pal and friend. Cat or Dog or Tadpole they are all animals that that made us smile and laugh.
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Hello Sunni. Please let your Mom know you are intouch with many people that have experienced GBS and that it also stands for Getting Better Slowly. We can not say that too often. If you Mom has a busy day and does not get a lot of rest that can cause a bad day. She will learn to listen to her body and know when to rest. This is where a good routine works wonders and she can plan her day to stretch out her energy to finish a day. The damaged nerves are leaking energy and even thinking and eating can tire you out fast. Keep the conversations short and very possitive! Keep the visits from friends and family to just a minium. Read to her will allow her to drift off for a snooze where a conversataion keeps you thinking and alert. Soft favorite music might be something she would enjoy. If she is not too sensitative to being touched a massage with creams might be relaxing. Just see what she wants. If you have someone there all day then make sure they take a break or nap also to allow the support but also to allow the rest. REST is very hard to get in a hospital and with GBS you just are not tired you are fatigued. Cards from friends and family make the days possitive and they stay more possitive. A Journal is handy for when you have many visitors coming they can read her daily progress and will not tire her out asking the same questions over and over. But more important the daily Journal will show her slow progress. That progress no matter how slow is progress and it is very important. As the GBS starts to reverse she will see daily things improve and over a week she will see how much she has improved that week. Later improvements might be measured by months and years. Find out if she has any questions for us! Knowing there is answers out there will really help, because everyone is different daily with all those ups and downs! You are great to be her advocate! We have a lot of respect for our caregivers like you!
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Sue I am glad you got some answers. Understanding why our bodies hurt is a big part of this and hopefully once the Doctor fills out that form for work we can get you back on to the road for recovery so you don’t have so many set back at work. Just another case of don’t give up and dig for more information on why this is happening and if something can be done! Glad you found someone that understands CIDP. Have a GREAT SUMMER! 😎
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Suzanne, Great questions! I did have pressure in my eye to the point it hurt when I washed my face. I also could not shut my eyes due to the swelling of the eyeball and lack of muscle control. I also had problem with my hearing being very sensitive. I did go to a ENT specialist why in the hospital and also followed up after I come home. That after 19 months is not as much of a problem. But I am still going to a Neuro optomologist and seeing improvement in the peripheral vision and yes I did also have all those things you have seen in your vision that are very distracting to say the least. I also had loss of vision at times due to bleeding in the eye. That has all improved greatly but it did take many many months. I would suggest that you get your eyes tested by a Neuro Optomologist, if not just for a reference point for future appoints. You did a great job of disscribing the different things you have experienced.
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Liz do they have you doing any kind of exercises with a chair. Controled sits into a chair a few times will give those muscles strenght….do that a few times an hour. I pick a few commercials to use for those kinds of exercises. Also sitting in a chair with your walker as a support….raise out of the chair like you are going to stand without pulling up on the walker or pushing off with the arms of the chair if it has them. Push up with your legs from the floor. Slow movements do the best job of making the muscles move. It is not the number of times you do this in a minute but the quality of the movement and making the muscles hold those positions. That is why Yoga is so good for this type of weakness. It is slow and works all muscle groups. I am getting better at getting up off the floor but I still have alot of work to do on my legs, back and hips. I do squats with my back against the wall and slide down to almost a sit and I don’t think you should do that one it does not sound like you are strong enough for that. Make sure you ask your PT to suggest some exercises you can do at home. Do leg lifts in bed and circles with your legs while laying on your side…don’t cross the center and cross our legs, especially if you have a hip replacement. REMEMBER THOSE ARE SLOW CONTROLED CIRLES. Small at first then larger when you feel you have that kind of control.
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First let me add to that HAPPY BIRTHDAY!
I am almost 19 months since my onset and I just took my 4 legged cane with me to the races to help me climb to my high post in the stadium to watch the races. I used it for a coat rack. I used it to lean my chin on when I was bored. I wanted to use it to come down out of the stadium since I don’t do well coming down steps without alot of help. Hubby offered me his arm and down we floated with the cane off the ground. I am glad I took it! When I got tired I used it to rest one hip and then the other. Also hung my purse on it with the stadium seats and my coat when I went into the restroom. Hubby said he like it as a little butler!
I use my other canes to reach the dog’s toys they lay too far from reach. I use the cane as a golf club to wack the toys farther than I can throw! I can reach out and tap a butt when they are barking and think I can not reach that far! Or when they have selective hearing! I can even reach out with the hook and drag them back by their collars when they think they can push past me when I drop something on the floor. I have even reached over and opened a locked car door for a friend. That is what happens when you keep a car too long the electric door locks stop working!
I have fallen twice, learned not to be stubborn. I consider it an honor to have a handicapped sticker for my car mirror and get those closer places to the door and if you give me a hard time about not being handicapped I willl HIT YOU WITH MY CANE! I earned both of those honors and then some! Today, Walmart had my electric cart all charged up for me! What a service that I truely appreciate! 🙂 Now if they would only stop leaving boxes of stock in the isles!
Carry that cane with pride. Decorate it with some special stickers! OWN IT! Decorate it for your Birthday with some ribbon and a balloon! I found a holder that is really for bikes and it holds a bottle of water and it fit on my cane. I can not tell you how handy that has been!
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I just had a D & C and I was concerned too and I told the Doctors and the anesthesiologist about the GBS and the lidocaine. They gave me a hard time at first….then called back after I guess they checked the internet LOL and canceled my surgery. I had to go get a release from my Neuro. He told me a few things that backed up what we have been taught here and in the release he told them something different. I was upset but everything went fine. Life is good! 😎
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I am another one that has a hard time with heat. Winter and Summer. People in the Winter that had the heat turned up to high and had a wood stove blasting! Summer on the patio I just sit in the shade and look around at what has to be done! No energy to speak of with the fatigue and then the heat makes me fell like I am going to burst! I take a cold shower after I take a warm one. Never mind even going into the bathroom after someone has taken a hot shower! But I am getting stronger! Muscle tone is coming back quickly that makes me so happy it over rides the hot days!
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HI BECKY! I am glad you found us. Lean on this forum for all the support you can get, you will need to have many questions answered. Don’t be afraid to ask questions! This is a great group and we love our care givers! Make sure you take care of yourself! One thing I did not see anyone mention was the eyes might be out of focus or he might be having double vision. The muscles in the eyes are not coordinated and don’t follow each other. Also the pherphial vision might be impared. As far as the touching and rubbing, some of us were very sensetive to touch. It was very painful. I think the idea of having a favorite toy is a great ideas as is the favorite books. Hang in there and keep things possitive. It is most beneficial for all concerned!
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When in the ICU I sweat something terrible. My bed was always wet. I would always have my legs and toes out from under the blanket. I had a fan blowing on me too and it was November and we had 16 degree temps and snow and I had the hospital window open. Talk about things going goofy! It took another month for that sweating to calm down. I still can’t stand heat! I work out in the rehab pool which is 94 degrees because a during a slow workout in the other pool 84 degrees I get chilled. I am still not able to go in the hot tub and I take a warm shower but then change to a cold shower right before I get out to cool off. I can wear a sweat shirt all Summer and Winter. Looks like a have a very limited wardrobe! When out in the evenings I am the first to put on my hooded sweatshirt! In the Winter I am the last to put on a coat! Yep I blame it on the GBS!
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Oh I am so glad I can put this one under the GBS column! I do get clumsy and just catch the tip of my toe and that sets me into a panic!
I was told by my Rehab Doctor that I did really good learning to walk again. I told her I fell twice right after coming home in that first two months. She said that was GREAT! I kinda looked at her funny and she said. Just think how many times a toddler falls when they are learning to walk!
I remember staying inside alot and not enjoying my yard last Summer because I knew I could not get up if I fell out in the grass. Now I think I have sat down on about every area in the yard to make sure I can get up on my own. I still stumble when I am tired!
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Terry> Good posts! I am sure they could help those that have limits. Too bad for the hills around here I can not get one that has peddles for the feet and hands.
Isn’t that feeling of freedom and accomplishment worth a try! Some times it just takes a creative mind and one to put our dreams into a product! I have also seen these types of hand peddles in boats on a calm pond. Also, at a child’s amusement ride. I had forgot all about them! Now is the time to get outside and try something out of the box. Even if it is just sitting at a picnic table on a breezy day and flying a kite! 😀 Exercise comes in all forms!
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I too was a smoker…smoking anywhere from no ciggies for a few years or stopping for a month. I only smoked one brand and did not borrow from anyone another brand. Mine had to be menthal. I would smoke any where from no ciggies a day to one pack. I felt it kept my sinus open and stopped them from post nasal drip. Maybe it did! I went cold turkey and did not even miss it till the Doctor asked me if I was going to give up smoking and I nodded YES. I never had another ciggy….been almost 19 months. I have been reading that 50 percent of the people that come down with GBS had a Upper Respiratory Infection right before getting GBS. I am sure that is true with me but the ciggies masked the degree of just how ill I was.
Now I am not able to do alot of the things I like without lung discomfort if it is foggy, traffic polution or everyone is mowing their lawns, allergy season alerts are not necessary I notice my lungs are tight when I am exposed to any of these things. Campfire smoke or burning leaves has to be the worse. Recently with all the forrest or wild fires our air has not been the best. I can notice it. I know I could use the A/C but I don’t enjoy it. I love to hear the birds and the kids playing and swimming. I never noticed before but when I pass a person that smokes I can feel my chest tighten from just that odor. I actually was not for the smoking ban in our area in public places but I can see what an effect it has on me now. Second hand smoke is terrible. I am now sorry for all the discomfort I caused to others by smoking!
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My LP was done very well and I still had several kinds of back pain thru the course of my 18 months of GBS. I am still not able to stand in one place for too long. I can be talking to someone and I have to take small steps away from they as they talk or shop. I am like a little kid that just drifts away! Being in bed and not being able to move or be turned on my stomach because of the trache or the feeding tube in my stomach my back took the brunt even when they stoved pillows under me to keep changing the positions. My tailbone was the worse. Sound also caused pain. It was like an electrical shock went from my tailbone up my spine as some cars and motorcycles passed, church bells rang above my head or someone touched that area. While in the water for aqua therapy all that sensitivity would disappear as I floated. It was so relaxing. It was not all the time or all at once. I did not take any meds for it either. But it was very real! Still disabling at times. Get plenty of rest! Mine was worse when I got tired.
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dianevc> Do I understand you correctly that your Son has not received IVIG treatments or Plasma Phersis? Those treatments should be used to stop the progression of the damage. There is no cure for GBS but the damage to the sheath of the nerves can be extreme if not stopped. Was he under the care of a neurologist? Did they run and nerve conduction tests? He was not offered any kind of rehab with the problems he is having? Also a decline can be that more harm is being done to the nerves or he is over doing it and is not resting enough. Rehab comes first and then an exercise program. He should be receiving Occupational and Physical Therapy. Did they do a spinal tap to test the fluid near the spine?
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cincymom> From what I have been told the mylin is damaged and letting signals or energy escape out into the muscles. Like a damages electrical wire with the plastic coating damaged you would get sparks. This is what causes the fatigue is wasting that energy faster than the body can produce more. In the case of damaged nerves the signal does not get there at all. That is why the persons reflexes no longer work. A neuro can do the nerve conduction tests if rehab feels there is a problem.
As far as Yoga it is a very specialized program for each person and their ability you will not be able to do all the movements at first. Which is nice for the person that can just do moves from their bed or the floor or sitting in a chair. All movements are slow and are improved apon as the person’s ability grows. So check the local library or check with your Yoga friends to see if they have a video tape they can lend you. It is just important that you start somewhere. I am sure there are websites with the Yoga positions online too!
I am glad you left us a message! Thank you! I wish we had more that come here and let us know how they are doing. Exercise has to be something you enjoy or you will not continue that in your daily routine.
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I am glad you are listening to her body. To start out an hour is alot. They started me out for 20 to 30 minutes in a heated rehab pool (94 degrees) Like walking you have to remember to walk only a short distance because you have to turn around and come back! When your muscles are weak it is nice to have the pool to support your body. That takes the fear out of falling and just the current and waves pushing at your body it works the tiny mucles and increases balance. The exercises will work the larger muscle groups. Coming out of the pool is the hardest. As the water drains out of your bathing suit the heaviness of gravity takes hold on your body and feels like you weight three times as much as you did going into the pool. I take those steps very slowly and listen to my body to determine if I have stayed in the pool too long that day, since each day is different. Remember rest is when the nerves are healing so sleeping is necessary. LOTS of REST! The exercise and activity will condition the muscles. Her nerves are leaking energy so you have to also take that loss in account along with the exercise. I think because she loves the water that is a great asset and with her attitude she will do great! Just don’t over do anything. That is what works against her recovery. AS she exercises she will regain her range of motion, stretches are easier in the warmer water and balance comes with stronger muscles. Stamina will come after all that. Make sure she is also doing the other exercises while in bed to make those muscles work a little harder under gravity. All good routine will consist of land and water. Also try Yoga where you need to hold a position that is good for a body too. Also helps with breathing control like the water work does.
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Your Dad is very lucky to have you as an advocate and caregiver. I understand your concern and just want to add depending on the type of treatment he has received for the prostate cancer, that could have stirred up the GBS again. Trauma or stress or injuries can do that. I think the next step would have been for the Neurologist to run an ncv & conclude it is not a real gbs attack. Be patient we are living around the world and due to the different times and difficulties some of us have typing and just living with our own residuals it takes time for some to respond. You are not wasting our time nor yours. GBS means getting better slowly and they just have to get your Dad headed back in the right direction.
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18 months ago I stopped using my car and therefore gasoline. It has been on the road in the last year on a limited basis. I did not buy gasoline on that date….I have a full tank thanks to our local grocery store that offers fuel perks. Giant Eagle and Get Go Gas stations. I buy about $400 a month of groceries so that gets me about 80 cents off a gallon and is good for three months before it expires. So I can save alot toward that tank of gas I get every 2 months or 2.5 months. You can also get credit for any gift card you buy for many of the larger stores around here like Home Depot. I bought enough gift cards to pay for my stuff at each store. Those purchases really helped. I come very close to getting a free tank of gas with all my perks! That free 30 gallons really helps when you have a vehicle with those large tanks! Now they have gift cards for most resturants too. Department stores! Gasoline is $2.97 here today….could hit $3.00 tomorrow. What I can not understand is price gouging. They have not recieved a delivery for almost a month but they have raised the price per gallon $.50 within that time. Don’t you have to pay higher prices for a product before you can pass on the higher costs?
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[B]Becca> [/B] I was told if you eat correctly and healthy foods you should not have to take vitamins. That has been basically what I have done. I have gone to the goverments site and got the latest suggestions. [url]http://www.mypyramid.gov[/url] Taking things that others claim boost the immune system should be avoided…it is your immune system that went out of control and attacked your own body. Let that get back to balanced again! Over doing it can cause you to take a few steps backwards in your healing too. You have to learn to pace yourself and avoid stressful situtations if possible. They will drain you both mentally and physically. I am sorry to hear that your grandmother has died. Going thru that can be enough to turn a GBS/CIDP persons life upside down with a relapse. A busy day or weekend can do a number too. As you live with GBS/CIDP you learn what your body can handle. Will a chiropractic adjustment help with this? Probably rest would do a better job after adding driving and gardening to your work load just in the last month. Listen to your body and rest. A visit to the chiropractor might help the rest of the body alignment from walking funny. Bad posture or weak muscles and tendons need to stretch and get stronger so they can help with your posture and hold those adjustments. Listen to your body. Sounds like it is the GBS/CIDP to me! Seeing your neurologist is really a good idea if you can not thing of something you did go set yourself back. They can tell if your meds are working for the pain and if you need some rehab too. Remember that with this illness you will get better slowly. Years not days. Keep up the good work and take care of yourself.
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It would not hurt at this time to make an appointment with a neuro opthmalogist. Mine was very informative with all my exams. He knew about GBS/CIDP and all the other variants like MF.
Think that maybe the eye is dry and that is why it is itchy? It can not hurt to try giving liquid tears from a bottle to see if that helps also with the irritation. Now is a hard time because so many are dealing with high pollen counts and allergies to all kinds of things. Worthy trying.
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You might want to try keeping a Journal…it can be just a few words on a calendar or a page for each day. Set a format for the pages so it shows you the way you feel, the things you accomplished that day and how they effected you that day and the next day. Try to make sure you do what exercises you can even if they are just stretching and range of motion for the bad days. Make it things you enjoy that will make it more interesting. A few posts on what you might do as a new hobby or places you want to see either by in a video or surf on the www or travel to and what you expect to be able to do when you arrive. Paste some interesting photos you find in magazines on topics you enjoy. Make your pages intersting and a collection of things you like, how you feel and what the weather was like. Who you talked with and who visited. Take time to ask the Doctor if they can check with your PT and OT to come to the house a few times a week. They can slowly move you thru some exercise that may releave or release some of the discomfort by massage or Yoga or other treatments. Keep an open mind and ask them what options are available. Some have turned to other treatments like accupuncture and meditation. There is alot of unturned stones out there to help. Don’t give up! Always work toward a step forward….just listen to your body and get better slowly! Do they have water therapy available? On those bad days that really helped me to feel some freedom from those bad days. It lifted alot of weight and fear from my mind. If I fell it did not hurt and cause more pain it actually made my organs feel like they were floating and not laying against each other causing pain. The exercise pool was 84 and the rehab pool was 94 and just that small difference in temp made such a great difference! Worth a try! A few weeks or months from now you go back and read that Journal you will see some changes that took awhile to show you a slow progress!
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We have lost a great person from earth but gained a great caregiver that has been strong in her support to us and her Mom. Zinnia I am so sorry and wish I could reach out to you and your family! Stay strong! You are a very caring Daughter! You have been an inspiration to all of us in the way you continued to care for your Mom. You are in our prayers! You are a great asset to our family here!
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Hello Everyone!
I had hemoraging inside the eye so my vision changed several times in an hour. Plus the eyes were not tracking together and were wide open and swelled and hurt to the touch. This sure was a challenge to have and try to learn to stand, walk and do steps. I had pretty much followed the ones on the message boards. I was not on any meds for pain except for the injury to my shoulder from two falls. I don’t know if I learned to not fall or learned to walk better! But I am doing ok now after 18 months as of May 6, 2007. I did have the burning hot which turned out to be itchy and Noxema did help with that. Still happens but not for long periods of time, but while it is happening you want to pull your skin off. The cold feet was not the case at first but now that has changed. I keep them covered when not in use. I also tried the Vicks Vapo Rub and it did not help my feet like it did others but my sinus are clear and the cat will not lay on the bed anymore! I also got the carpel tunnel symptoms but they went away after a few months. Now my eyes are very clear except for a small amount of pheriphal problems but ok for the most part. It has been very interesting to watch how everyone is so different, but also so very similar in the symptoms. I just felt as long as I was seeing any changes that was a possitive sign my body was trying to still heal!
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I have to agree with everyone that rehab was a very important part of my recovery. I needed to be able to brag each evening to my husband on what I was albe to do that day! I had 4 or 5 brags each day for my husband and family members and also for the aids and nurses on the next shift. Their asking me to show them what I could do all thru the day was easier than repeating that exercise 12 times here and 15 times there. Which brings my rehab back to doing those every day things. Routines helped. Mornings started with stretching in bed. Then they would leave to give me a rest. Next was OT and they would help me do my daily personal routine. Brushing my teeth, combing my hair and washing my face. Feeding myself become part of the mornings too! I helped where I could. With breaks inbetween this routine to rest, I took advantage of just closing my eyes and ignored distractions. I truely inherited poor sleeping habits in the busy hospitals. The staff told me you don’t get rest in the hospital. They were right! Then I would have a PT where they would teach me to roll over or pull myself up on a bar to let them move my pillow or to check my back for bed sores. I had to learn to do all that just like a infant! Even running my finger up my body to touch my ear was a big deal but it was part of the orginal process to get me able to comb my hair! To feed myself, to hold my sippy cup! Looking back they had a plan…each movement lead to a larger movement! They worked the upper body and the core and the lower body each day! They tested me to see if I was ready to move on also. I was never rushed or over exercised and they listened to me. There was never any pain caused by OT or PT and if it easy for me to do myself that was my job to keep trying. When I showed them my brag we moved on to the next movement! Some took days…some the mind made the body move by the next day! Somedays I felt like I would like to try something and it was like they read my mind…they would come in and say to me “Let’s try…….!” I started to wonder if I talked my in sleep! LOL Takes time but stick with that rehab it is worth it and don’t be afraid to ask them for an exercise to relieve a cramp in your hand or leg. Don’t be afraid to show them you are not able to move your wrist the way you were before….let them work on every tiny muscle, ligament as well as those tendons just like the larger groups of muscles. Sorry for being so long and rambling but I loved my DREAM TEAM!
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Hello Everyone!
[B]beckyankerberg>[/B] I will do an interview with you but I have to tell you that everyone’s situation is different. You would be better to post your questions to this forum and have them tell if they have GBS or CIDP plus any variants. That way your presentation would be more accurate. 🙂
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What a great thing to celebrate with everyone!
I will take one of each! LOL OK OK Just pick one? Can you believe I don’t like either one? I don’t enjoy baked goods. Oh maybe a brownie or a piece of fudge or a slice of cream cheese cake once in a while. I don’t like chocolate either! Honest I am not from other space! I am sure there were others that read this thread and did not vote!
OK I like a good bear claw or pecan roll once in a while. I have been known to buy the glazed pretzel twists too. But that is not even once a year but once every five years! I know I am weird! LOL
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Liz I hear ya! Just a little independance can go a long way! I hope you end up with more than you wished for! I love your photo! Keep up the good work! One thing about rehab they will not let you get ahead of yourself. They have a program and they make sure you are able to move on to the next level and not a minute too soon! Be patient!
I am still going to exercise a few days a week on the machines and a few days a week in the pool. Both take care of things that the other exercises can not do. I am getting better slowly! Trying to be patient! I have to admit that from the beginning of the year I have noticed I am doing much better than I expected. There for a while things were moving slowly and now since my strenght is building up I am doing better!
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I think it is a combo of things. Probably the therapist expected too much and can adjust your program to work with your abilities now. Giving you a challenge but making sure it is not doing more than your body can handle. If it was pain I would say tell them immediately. But since it is an ache that is just the muscle complaining that it had to work. Meantion it to the PT and they can give you more stretches and movement to the surrounding area to loosen things up. Ask if they suggest a warm compress on that muscle. Also make sure they do warm up and cool down exercises to get all the muscles ready for a work out and get all the toxins released out of the muscles too!
I am glad you are back to posting and back to exercising! Listen to your body!
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Cheryl I am sorry you are going thru this right now. Just get the most important stuff to take with you at first. Explain to them that they can expect to get the information from the other sources, but they can not have them available that quickly. Don’t let this get the best of you. Keep your attitude and see the possitive that will come out of this for you! (((HUGS))
Please don’t let them immitate you. That is what their job is. To weed out the people that are not worthy of benefits from the systems. Be patient, be professional and have your paper work organized. Show them you know how you feel and you have done your homework.
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Hello and Welcome!
I am from Pittsburgh, Pennsylvania. The city that has been voted #1 city to live in by Atlas Magazine!
Tonya, Allison Park is not that far from me. Enjoy your Summer here. One area in the survey that this area lost score in is Climate. Not many days with blue skies. 72% of our days are cloudy. But still wear your sun screen! I hope you will be here and can attend one of the area horse shows. Especially the larger one in Hartwood Acres. In past years many well know riders have attended. Sorry I don’t have a show date for you.
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I agree…add my prayers also for the friends and families of those that parrished in this senseless attack. Hold each one of those persons that were wounded very tightly in your thoughts and prayers. Especially to the friends and family of Hilary Strollo (PRHS2006) who was wounded. I hope you have a speedy recovery! You have many people in Pennsylvania that are worried about you and your fellow students at VA TECH!
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Carol and Norb I might of been the last one to find out that Norb received surgery. But after reading all the post that were so possitive and showed true concern I am at a loss of words. Not that I did not expect any less from this group but the posts were absolutely beautiful. I am so glad that Norb is doing better. Carol you are one of the people in our lives that post to this forum to let us know that things are ok. But I have to let you know without caregivers like you and the rest of our support group here these boards would not be the same. The possitive attitudes gave me gave me a bright outlook for this weekend….even if the skys are grey! Nice going family! I am so proud of all of you! Continue to get better Norb! :p
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JayDee I agree totally with you this is not a competetion. This is a new lifestyle we are customizing for ourselves. Your doing a great job and the weather will get better. I consider my lazy days of exercise the days I do the circuit of machines and the treadmill and some of the other machines not in the circuit with the personal trainer. The days I do the Yoga or go in the pool are my favorite but I hate to come out of the water and it is not because of my pokadot bikini. It is the fight with gravity that makes me look like a snail coming out of the water. In the water it is SO VERY easy to over do it and then have to take a nap after class. I am very good about pacing myself but have to keep checking my exercise for the week that I do some in the water and some exercise on land. 1 to 3 inches of snow expected here starting Sunday Night….watch out in NYC I think it is heading your direction.
JayDee have you seen the video walking the pounds off…that is a nice video to walk to indoors. All done in place and is by Leslie Sansone. I use that one if I can not get to the treadmill or the weather is YUCKY!
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Michael Besure not to over do the stretching. By that I mean just move those arms and legs. Make sure you are not over extending thru a regular stretch. Movement is important. You don’t want to pull anything or turn wrong right now! You want to be able to move every little muscle in all the natural directions that it is to move. Holding those positions are better than quickly moving here and there. Make that muscle work a little that will help you not get cramps as you start into heavier rehab. Your doing a great job!
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Zinnia You also have to be patient. Sounds like she is getting the care she needs and they are trying to work with her and test her daily ability. Depending on the amount of nerve damage the healing process will take years to heal. The nerve has to regenerate also. The sheath of the nerve or the mylin has to also repair and for now the energy is leaking into her body and the nerves are not getting the directions from the brain. The fact that their is even some movement and she is trying is a big plus. As far as reading to her if only for a few minutes each visit it gives her something to think about…..it also gives her hope if you see any signes that are possitive. Sounds like there may be a need for someone to come in and talk to you and your family on how to take care of yourselves mentally to help you cope with what is going on in this slow process. Maybe there is a Liason in your area that can come in and talk to her and read to her. There are travel books that are very discriptive and paint a picture of the area and give you history of what to expect there. Since she is not able to see that might help her visually imagine what that area is like. Funny stories can be printed out from the internet. Poems or humorous stories also can make a day go faster. Or a silly joke of the day! Keep it possitive! Get yourself some help to deal with the past and keep yourself healthy!
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My eyes were open all the time and I had to ask for drops after about 3 weeks in the ICU. Guess they were busy tending to other things and I got a nurse that had finally thought about that part. It helped during the day and I got them amost everyhour as needed and I NEEDED THEM! I was completely paralized. I then was moved to another unit where they dealt with patients with traches and strokes. There the one nurse was thoughtful enough to mention to the Doctor that I needed a sauve for my eyes at night since I was not receiving the drops during that time. That really helped but clouded my vision, so I had them put it in right before midnight. It is good to have ideas to bounce off other caregivers to help the current patients. Just a shame that nothing is automatic because each one is different. Hang in there you are doing a great job!
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Oh I missed two good post I could have responded to with a big True. I loved to play miniture golf and should ask hubby to do that with me some evening like we used to. We also used to go with friends and bowl about once a month over night. Discount and did not have to wait for the leagues to get done. It was also an excuse for parents to lift the curfew time for that night. We would go out of breakfast and go home to sleep the day away!
TRUE OR FALSE
[B]Next person used to shoot pool[/B]. I never actually had my own cue stick did you? For many years I had my own pool table and used the family cue sticks does that count as having my own? I say nope it was not measured for my own lenght.
Good thread….brought back many good memories!
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grawplyr I agree with Marie. Yoga is a big help…learning exercises in deep breathing has really helped me. I vibrate inside and some times it gets so bad I am afaid to take a step or it is so bad it is making my vision shake. I have learned to just stand and take a few big deep breaths until it calms down. Sound produces pain for me. Some sounds just shoot up my tailbone and up my spine and burn and cause extreme pain for just a few seconds. That might also set off the vibrating. You do what works for you and advise you care giver that it is doing this. For me I close my eyes so I don’t get sick at the stomach. I also turn and touch that person to let them no I am having a problem but not to panic. Numbness while holding the phone or holding on a pencil or a fork can cause my muscles to go into a cramp. It does not last for a long time, so I have not been taking any meds either. See if you can find something that works for you. The weightlessness while in the pool I found is a great stress releiver for me and it is easy to get worn out in the pool and not know it till you come out and gravity hits like a ton of bricks. I always take my cane and leave it near the steps for when I come out of the water. Till I get my sea legs I am a little unsteady. But as my strenght comes up I notice that is getting better too! Lets us know what works for you!
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Michael,
I agree totally about our care givers being there for us all the time. It would have been hard to to this without them. They are truely our Advocates.
Think about making a list of things you would like to be able to do but at this time you are not able to do. No matter how great or small.
Right now you can start by doing range of motion and breathing exercises. Stretching and flexibility and range of motion will come back with a regular routine.
[B]Occupational[/B]
Personal hygiene, combing your hair, getting dresses, brushing your teeth to using any tool that you may need to repair an item is all OT.
[B]Physical[/B]
Walking, getting out of a low chair, standing for long periods of time. Getting in and out of the bathtub or up and down stairs. Getting groceries, trying on a suit or a pair of shoes. Being able to pick up your child or being able to place something on a shelf.
Anywhere you notice a weakness, that is going to give them a good idea what kind of therapy you need. Also what you already can do.
Don’t get discourage if they start at the bottom and work up to the things you were already doing before you come down with this illness. Most important it takes times to bounce back!
Pool exercise was great at first for me rather than the floor exercises and classes like Yoga….I slowly have worked my way up to being able to do much of what I want now…..been 17 months. The distance I walk could be much better!
Working with a partner in this stuff might be great for the both of you! While being ill I actually notice my dogs muscle tone has declined!
Enjoy your Summer! 😎
…..also before I forget let us know how you are doing on the GBS exercise message board.
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I was hoping by this weekend I could add more walking outdoors, but this is the coldest Easter we have had here in many years. I guess I will walk around the pool tomorrow. I walk forward and backward and side steps in both directions. I look like an animal in a cage trying to get out! I once was asked if I needed help finding the ladder or steps! I said “No Thanks! I am looking for the elevator!” Then I busted out laughing and have been friends with that person ever since! Just taking that possitive attitude to another step….added HUMOR! Oh have I learned to laugh at myself! At first it was nerveous laughter, but now I think back on the way I was and just keep laughing. I am tickled pink to see how much I have progressed in only 17 months!
CHIN UP, SHOULDERS BACK and pull that TUMMY in! Especially after that Easter Meal. More exercise for any one? :rolleyes:
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Hello Michael, and Welcome!
When I was in the hospital and in the ICU I asked my Doctor if he could get me someone to just move my arms and legs. I had my Son when he visited to just hold my hand straight across his palm and keep the fingers from curling under. I would also have him put on a moisturizer to help with the dry skin and put his other hand on top to give me some warmth in my hands. Don’t be afraid to ask your Doctor for what you think you are ready for or want to try. One day I did have terrible cramps in my leg and ask for rehab to come to ICU and move my leg and arms. I never had cramping after that. Everyone is different but when we find success we want to share. Hope you have some things to share that have worked for you for the next new member that come along. Remember your nerves need REST to heal and the muscles need movement or exercise to feel healthy. These two things fighting against each other will be a conflict for some time to come! Listen to your body. Like you have read before GBS also stands for [B]G[/B]etting [B]B[/B]etter [B]S[/B]lowly!
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Zinnia I can hear the frustration. I understand it and I have seen it in my caregivers. You need to be an Advocate for your Mother but you also need to take care of yourself. All the information here has been so good and you have to remember the most important. Everyone is different in the amount of damage their body has received and GBS does start for a quick reminder that it means [B]G[/B]etting [B]B[/B]etter [B]S[/B]lowly! Put yourself in your Mother’s position. She is going thru alot right now. Each day is different to some degree. The fatigue, depression, loneliness and think of the frustration she is going thru on an hourly basis. Help her keep a possitive attitude….that does not mean in any way you are accepting this current condition it just helps lift her spirit each day knowing she is not bringing you and your family down and being a burden. Ask her if music would help. In some cases sounds is an over stimuli and causes pain. Tell her about what happened in her favorite program on TV….be her eyes for her. Tell her about the weather and ask if she would enjoy you reading a book or poems or the newspaper. Have her friends and family write letters and you can read her mail to her. Ask her if she needs her hair cut or if she would enjoy having moisturizers massaged into her hands or feet or maybe a back or arm massage. Maybe just a hug! I think you need one too and also a big pat on the back to come and be an Advocate for your Mother. Keep up the great work and take care of yourself. Don’t get discouraged with one post and the slow responses you might get over a Holiday or weekend. Some of us might not feel well enough to post every day or have someone else typing for us on this forum. Tell your Mom we are all saying a prayer for her and hoping you might be able to take some of the posts back to her and read them or get some of her questions and post them here. Let her know that she is not alone. We all have caregivers that we see daily wearing down and getting fragile. Make sure you get help too! Welcome to our family that is always growing. Too bad we can not hear the warmth in your voice or the calm in your stories. Too bad we can not see whether there is a smile on your face or a frown. If I was there and I seen a frown I would give you a poke in your side to turn that frown upsidedown! 😉 We are lucky you have joined the forum! HUGS during the coming months!
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[B]Cheryl>[/B] Sounds like a very good plan! My Aqua Therapy was 30 minutes too and then they would let me just float or tread water for a few more minutes to stretch what I wanted to stretch. The classes are 45 minutes and I think I mentioned that some of them are for Arthritis patients and they are slower pace…I get cold in those classes….the faster classes I do what I can and can keep up pretty well to the group. But if they get too slow I get out of that pool (84 degrees) and go into the rehab pool (94) and I really do stay out of the hot tub (104) My body temp is stuck in the middle I am never cold when it is cold and I am never hot when it is hot….so I think that is dangerous! So I just use my head! I am able to feel WIND CHILL….Happy Easter! You can shut off the lake effect snow now! Brrrrrrr
Have you heard of the Megabus? [url]http://www.megabus.com/us/schedules/[/url] $1 fare from Pittsburgh to Cleveland
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Ty> We share the same date we come down with GBS. 11-06-05. I also had a severe case that scared my family for the next few weeks! It sounds like you are doing well! I was in the hospital for 9 weeks and have been doing well with the rehab and recovery. I know what you mean about the frustration and the fatigue. I think that is the only things I complain about the most!
I did have a teeth cleaning at the Dentists exactly one month from my onset. Other than that I had no other similar situations on the list. I don’t even remembering having the Sinus infection they said it could have been. STRESS was big the years and months before my onset. I am sure it did not do my body good!
If you do a search on MSN for “Stress causes a depressed immune system” you get the follow results that do support some evidence. 😮
[url]http://search.msn.com/results.aspx?q=Stress+causes+a+depressed+immune+system&FORM=MSNH[/url]
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I agree about the stress factor also! I was not ill before my onset of GBS. My Doctors thought because of my history of sinus infections that I might of had one of those that was not bad enough to call the Doctor and it went away. Usually in October when we turn the furnace on I would get Broncitis and have terrible problems like a Sinus infection or allergies….for years I had not had the problem and 2005 before my onset was no different. I just can not remember being ill. BUT I had much stress for years. Friends that were younger than me that had died from Diabetes. Another friend died from a 3 year battle of Cancer leaving three children behind. Third friend was shot to death by her adopted Son of (2 years). Several very close relatives that had me very upset about their loss. Father In Law that died and left us to deal with the estate and family matters that were very very stressful. That was in 2003 had continued for a few years….we had just begun to get our lives back and the GBS happened. I am sure it had a big factor in my onset. Before those few years I did not have stress. Life was GOOD! Son had been pushed from the nest and was doing well on his own. Now I have been changing over to this different lifestyle. Lots of support from caregiver/spouse. Friends have moved on or moved away as their lifestyles have changed with retirements and warmer climates. Life has been interesting to say the least! StReSsEd? YEAH I would say so! But still remaining possitive and using my attitude to reshape my new lifestyle that is constantly changing for the better!
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[B]Cheryl>[/B] Think the class is too much for your body or just a combo of things? Might want to try just half a class and see if there is a difference. Hope you recover your strenght and get your body straightened out again! Get Well my friend…glad you are listening to your body!
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Say it is not SnOw!
Near 80 yesterday and today! I feel great!
Wednesday the high of 50 will be in the morning and drop all day!
The following days will be highs in the low 30s and lows in the low 20s.
We are having GROUNDHOG for Easter! Snow slushies for dessert!:eek:
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I think that this little bit of freedom and continued partisipation in activities will be a big boost to her ego. Just being around friends and getting back to your regular routine does lift some of the stress and give you minds something to do rather than feel sorry for yourself.
As far as the stiffness and pain if from weak muscles the activity level being raised will help start to build up the muscles again. That will help to hold those adjustments in place. Just remember the nerves need rest to heal and the muscles need activity. Don’t let her over do it and have a set back.
Sounds like things are working for her now….keep up the great work as a care giver….we have so much praize for our caregivers!
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As a rule everyone that travels from Nebraska has to stop in Pittsburgh! How about adopting me while you are here! LOL I have many friends in Florida and we have a trip planned for next February. I am going to make sure I check into a wheel chair or some kind of motorized rental so I can be independant.
First call in advance to the airport and tell them you will need a wheel chair from the car to the gate and also when you get off the plane to the car rental if you don’t have your own.
I plan on having one for times when I can conserve energy, which is no different from here at home. I use them durning the week at most of the big stores and when there is going to be alot of standing. I also would suggest if you have not already obtaining a handicap parking tag for energy conservation too! Just these little suggestions willl help you enjoy your vacation.
If you are not going to stop and get me…..just wave as you fly over Pennsylvania.
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[B]Tim don’t be too hard on yourself[/B]…we all have had the same experience. You have to have the experience before we can tell you what you have done. We all have pushed our bodies for some reason…..some of us have pushed more than other. You can not go thru life not knowing what and what you can not do. You have to test your ability. Now that you have had this setback you know to give up a few things each day and see what works for you. For others it can be a busy vacation for a few weeks. Others it was a busy weekend that zapped our energy. Just sitting watching a sports event on tv verses a slow movie. Also you have to take in consideration what did you do the day before and the day after. I keep a Journal…it started out to be on my calendar and now is my daily planner with larger spaces for my notes. Wednesday and Thursday I had doctor appointments and the days before I knew not to stay at the mall and the gym too long. Those days I actually tried to conserve energy. I cut back on all activities…I did them but not for as long of a period as usual. Then without thinking the weekend was coming up and I squeezed grocery shopping and a trip to the mall for something on sale. I felt fine till the weekend and then the fatigue showed up. I looked back at my schedule for that week and I knew it was too much. Next week I had about the same number of appointsments and also needed some things from the store. I spread things more evenly over that week and it did not take as big of a hold on my energy level. This week coming up I have a Dentist appointment and have to take my car for repairs. I will have to wait for the car to get fixed…something that does zap my energy is sitting and being over stimulated by crowds of people. I am a people watcher! I don’t get to relax but I have learned to watch my schedule and make appointments if I see that one is starting to fill up. I shop for groceries for a longer period of time….rather than for one weeks worth I extend it to 10 days worth of groceries. I make a big circle and do things in one area of town rather than run to the east side and then back to the west side….one day I do the east side chores…usually when I am there or an appointment anyways. I might wait and go toward the west side of town in a few days. Doing things two days in a row don’t sit well with my GBS. I realize that some have to try and go to work or take care of another family member but by budgeting your time wisely you body will benefit. My rule now is I don’t let anyone talk me into something that might wear me out! I ask for help if I just need a few things from the store. I don’t cook everyone of my meals…..I sometimes cook extra and have left overs. I am sure you will be very skilled at working out your own schedule and review your calendar to fit your new lifestyle. It does get better, but it takes time! Your young and your head goes a million miles an hour. Mine does too but I know this old body can not always listen to the head or brain. I feel like I am in a video game that some one took a wrong turn and missed an energy pill! I have to go bad and look for other routes. Enjoy your game you are writing the rules. I have a friend that had GBS and he was young and played sports….after the GBS he continued to do what he liked, but in another way….he become a Coach and let the kids use up their energy. I am volunteering my time now and am hoping that will keep up my skills and get me back into a routine so soon I can go back to class for a degree or find a job that I will be able to do. I am into this for 17 months now and see changes all the time. Some are mile stones and some are tiny but they are just as important to me as the milestones! Stay possitive! Believe in yourself! 😎
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Aimee> I am sure someone can help you….sounds like a General thread that will generate several responses. I am sorry I am not able to help you out but wish I lived closer to you. You could join me on my walks. I lost all muscle tone and could not do anything for myself….could not even get enough strenght together to use the remote for the tv or the call button for the nurse. Even the soft touch one they have. When I started to exercise they just got me to start moving that was hard enough…..by the time I got home and went to the rehab building after having rehab at home. I did the machines in the gym without any weight on them and I struggled with the weight of the handles. I was very strong going into GBS and it is something I am still working on to gain back a reasonable amount of strenght in each muscle. I can remember someone telling me to let the nerves rest that is what they need…..they muscles need movement to make them stronger but that zaps your energy and too much exercise can actually set you back on the healing…..you just have to take it slowly, so when I go to the larger stores I do use the electric carts they supply the handicapped. I think it would be wonderful to be able to have freedom to move around more. Hang in there!
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Keith I think it is different for everyone, but yes I have drove using sunglasses before. I just never had the drops that colored the circles under my eyes yellow before. Just not yellow, but NEON YELLOW! I would not have drove and went and completed all my chores if I was not able to see correctly. But I am going to ask him next visit if you should not drive when receiving those types of drops. I had never had any drops before this appointment. They kinda reminded me of the drop they gave my pets to make sure they did not have scratched Cornea when we had gone in with eye problems. I remember it was windy that day and cold but not sure if it was cloudy….here we have over 72% of our days are grey and over cast. I very seldom wear sunglasses. 😎
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Oh yes the drops! Were they the yellow ones? I only got those once so far and they did not tell me they were not clear. I went shopping after my appointment because I would be too tired to go back out later in the day. So on the way home I went to the bank, got gasoline in the car, some grocery shopping and was very happy. People were so friendly, I thought it was the weather was warmer than usual and the snow had completely melted….Talk about melting….they were looking at my eyes and thinking….oh she should take those eye drops off. YIKES wish they would have told me! I actually scared myself when I looked in the mirror! 😮
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Stacey I don’t have CIDP I had GBS and heard there was a GROUP HUG on this message board. I love to get a hug once in a while too! Hang in there and listen to your body. Don’t over do it, but stay steady! Put yourself up in the #1 spot and look in the mirror and smile! 😀 Now give yourself a BIG HUG! You are worth it! I read all the posts and I don’t have anything to add just that you have got alot of good advice on this thread! Hope you find this kind of support to see you thru any thing you might come across! You know we worry about each other here!
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It is my opinion that your friend knows her body better than anyone and is going through all these things. Rather than listen to a doctors guess….I think I would go with the other doctors suggestion to go to the Mayo Clinic if that is possible. Get a few more opionions and let them get to the cause…I would not even try to guess what it could be unless I had a medical background…could be many things. The stress caused by self diagnosis can be hard on a body and soul too! Tell your friend that we are on her side and hope she gets someone to listen to the complaints before making a Rx. Someone that will do a follow through with tests that will atleast rule out what it is not! Then approach the results with determination to come to an educated conclusion!
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I hope everyone is doing their best to do their best. We all are working at different levels and sometimes we have to be creative.
[B]Maureen>[/B] Your walking indoor program is exactly how I started out in the rehab pool. By doing one set of the easy exercises to start and make sure I was doing them correctly to avoid being injured. The fear of falling was gone since I was at ease in the water and not being fearful of falling on a hard floor. Having a partner in the pool to be there to lend me a hand if I started to float in the opposite direction than I wanted was also nice having a pool buddy to talk and laugh with. I agree it has to be fun and you have to enjoy what you are doing or you will not keep that activity up. I am still exercising in the pool and now able to do all the stuff you mentioned. But now I have taken it to the next level and have spent all my Winters being indoors. When the weather breaks I take it out to the grass and even have the dogs joining in to make me laugh. Keep up the good work!
[B]Cheryl>[/B] It takes me longer to type about what I do than it takes to just do it! Please don’t let my long messages talk you out of exercising. Listen to your dog, they will always keep you on an exercise routine. We go for our several daily walks around the back yard to check out the flowers coming up after these few days of warmer weather. I mentioned the Crocus are blooming…well now they are not! The deer ate them off right at the ground and the new Day Lily sprouts too!
Went to the Neuro today…..he said I am doing great! Come back if I have a question! None of the reflexes are working in the elbow or the knees! 😮 No biggie!
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Cheryl, I know what you mean. In combo with what I have done a few days before my workouts and have to do tomorrow. I really watch that. Lets just say I am struggling in come areas. Yoga in class is really funny and sad at the same time. But I just pretend there is not 23 other people in that class with me. Some have offered to help me get up and I just tell them I still am meditating and doing my breathing exercises. Then I bust out laughing! Usually they do too! When exercising at home I split everything up to a little bit each hour.
Weather here is wonderful. Don’t send us any snow, the forsythia is now blooming and the crocus are gone…the deer ate them. I love the Spring/Easter flowers that are in the stores right now. Take care!
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While in the hospital I seen the neuro opthamologist twice and then on a regular visit for months and then started to spread the appointments out over a longer period of time. None of what he does hurts or causes me any pain. It is just boring to me! But what counts is he is seeing better results the longer I am recovering. Having double vision for over 10 weeks was aweful. No tv or reading was horrible and boring. It is now better and the peripheral vision is still getting better. The field of vision has increased to get better. Take time the optic nerve and all the nerves in the eyes take time to get better just the rest of our bodies. Hang in there and I am glad you are going to a neuro opthamologist. Keep up the good work on getting well.
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Did some Spring cleaning on my exercise routine. I plan to add some more walking to the weekly routine. I plan on still doing my routine weekly doing the circuit of machines with very little weight on them. Usually on Tuesday and Thursday when I am not doing the machines, I will do classes in the pool. They offer several aqua aerobic classes, ones for people with Arthritis that are too slow for me I get chilled but can switch over to the warmer rehab pool and do the Tai Chi class in there with the slower Arthritis class. Gives me a good workout but I have to make sure I don’t get over tied. When I try to do too much and come up the steps out of the water I CAN FEEL GRAVITY taking over my muscles. So I make sure like when I walk I do only half as much as I think I can do because you have to turn around and come back to where you started! Spring is here I hope everyone can get outdoors more!
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Beautiful blue skies and 70° @ 6:00 P.M. Pure “get the grilled fired up” and cook outdoors weather. I am enjoying it! We should have planned a picnic and everyone bring a covered dish. Many days like this to follow! I can not wait!
😎 Get out the sunglasses and the sun screen! Soak up that vitamin D!
Hello Everyone!
I hope the weather is getting better for everyone. It is sure warming up nicely here. I think I can safely agree Spring has arrived. Time to get fit with any exercise you can manage. I have been trying to increase my walking time and number of steps I take each day. I find this one of the hardest things for me to do. My number one rule I follow is to only walk half as far as you think you can and remember you have to walk back that far so make it a short distance. I go to the stores and feel some freedom when walking with a shopping cart. I find it harder to walk around the block. I find it really hard to find a buddy to walk with. Especially in the morning when I have got my rest and feel my best. I am wearing my pedometer and can see a slow increase with the results but also see it is a very slow process. I guess I am using those larger muscle groups and it does take them longer to get stronger. I am sure those areas like the hands and feet that are the last to heal the nerves might be the last muscles to get the right signals and not waste so much energy? I am just trying to figure this all out. Any input would be appreciated. I am making a visit to the neuro this week so will also let you know what kind of progress I am making during my 16 months into this. Honestly I think he is going to be very happy! I think I am doing very well for having a severe case. Hanging in there! I am glad the Ground Hog did not lie about the weather. We actually had a very mild Winter here.
Hello Everyone!
[B]JayDee>[/B] Yep strange weather over the weekend. Now it has changed over from an inch of rain to a pound of SUNSHINE. Spring has Sprung. We did get the little stones of gravel out of the grass. I did not help with that job. I did not mention this blower is a hair dryer for horses and cows. I use it on my dogs and remove any hair that is loose due to the shedding process which is taking place here right not too. I can not handle the extra work in the house due to my furry friends shedding so I use that on them when they go out and they love it! It is strong enough to blow a cow over the moon so the snow was not even a challenge for it! I am out there and back in the house before the neighbors can find the source of the noise! LOL Thursday it is going to be 65 degrees here. Daffodils are up 5 inches and the Pussy Willow are showing silver. We are on the upswing now! Just not time to even open up the pools they don’t do that around here for a few more months and then it takes another month for the nights to warm up the water to comfort level. I wish I could do the hot tub….still just too hot for me! Now I am not green with envy! 😀
[B]Lee>[/B] Your thoughts and reasoning are much like mine! Don’t exercise till you fell the burn…. Pace yourself and do what you body can handle without any effect the next day. I fell at that steady pace I am climbing that hill faster in the long run rather than two steps forward and once step back. I do know that exercise in the pool is so much easier on me and I enjoy the water but I do do more exercise on the land. Just to make gravity work for me a little and challenge me a little and I look better in the sweats rather than the swim suit.
[B]cara>[/B] Your wobble board sounds like it will keep exercise fun and interesting. I am not sure…no I know I am not ready to get on a wobble board at this point. Unless I could take it in the pool and try to sink it to the bottom and stand on it that way like I do with the paddle boards in the club. I will have to see if they have any of them in the club. I think the one I seen was a ball with a wooden ring around the ball that you stand on. They also have the one that is a planK with a round log under it like they use for the jugglers at the circus. I am not really for that one either.
I am very glad to report that the pain and weakness in my back is getting better. I am sure it is from all this exercise I am doing to make it better by working on my back, hips and abs. Your right it is important to work on the core also. Forgot one area and it becomes weak and the body gets injured.
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Liz I am glad you come back and let us know how you are doing! As far as exercise do what you can do. You can always stretch do beathing exercises to get that oxygen into those areas. I am glad that Daning with the Stars has started again. I love to dance and today I put on the radio and tried to do every old dance I could remember if only for a few seconds just to see if I can still move those parts. I was surprised to learn I can still get into those oldies. I still just need some practice with the feet. But today they were Happy Feet! LOL Remember to move your arms and twist at the waist and keep those shoulders moving. This all takes time!
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I still use every Sunday to look over my exercise program and see if there is some other form of exercise I can consider to add. I can always use some thing to keep it fun and interesting. I have been doing more lifting and have noticed my strenght has returned in my shoulders and arms. I am able to put stuff on the next shelf up. Not on the top shelves but higher than I could reach before. After turning the clock forward and it staying light later in the evening that did mess up my sleep routine…I wanted to stay up an hour later at night and sleep an hour later in the morning…..too me this long to get that routine changed. I am going to leave the exercise routine alone and work on holding positions longer in Yoga and Tai Chi. Doing each exercise slower and holding that position gives you a better work out. I have noticed that has got alot better and increased my stamina to a point where I am actually benefiting from the efforts. Get this a actually decided that I was going to remove the snow from the whole patio but did not think I could do the whole thing with a shovel…..so I got out the leaf blower and blew all the flakey dry stuff right back into the grass and did not have piles around the patio for the Yorkie to navigate. Only trouble with that routine is that hubby said I did such a good job I can take it over now. I proudly stood up straight and gave him a salute and assured him I have it covered. Oh WHAT have I done? LOL [B]Cherly>[/B] PLEASE don’t send me any more snow! That was the fluffy stuff, what if it is that wet stuff that is only good for snow men? Maybe use the garden hose to melt it off the patio? LOL Where is Spring?
Everyone thanks for the kind words about my loss, I know you understand about loosing a furry child!
Hello Everyone!
Jaydee> Oops! I did not mean to cause you to be sad, I want you to celebrate each step and each and every bit of strenght I gain with me! we know this is a slow process. I could get down by using furniture and could do my yoga at home. I would not do the stuff in the correct sequence but I would do all the floor exercises first and then get up using furniture and do all the tai chi and yoga standing exercises. That gave me alot of hope. It was just getting up and down between exercises that I could not do quickly in classes. I will let you know this Friday if I am able to get up during YOGA CLASS. I have been doing several lay on the floor…roll to get to the crawl position and get up to the kneel position and stand. I am getting stronger! I don’t feel I will need help now in class and will not be a distraction to other classmates. I think I can blend in if I don’t grunt…that is not part of Yoga! LOL
Everyone get busy and move around at your pace! Breath deeply it feels great! Spring is in the air! Next few weeks so will pollen be in the air.
Hello Everyone!
[B]Hi JayDee!>[/B] I have always made sure that I got my rest after I got home from 9 weeks in the hospital I was craving a good nights sleep! I am able to sleep during the day as long as I needed. Kid coming home to check on me and the Nurse and OT and PT during that first month or so did make me get up but I planned my day around their visits and did nothing else. As I could move around better then I would sit at a table and clean the clutter. Dust off a counter top etc…….I still let the house work go when I can. Just lately I could notice the naps were getting shorter. I actually think that is was a combo of the ability to concentrate for a longer period of time and did not need a nap as often. I have always tried to plan what is for dinner and even if I can not stand there and make it I have it planned and the things out to be prepared. I how my hubby that for as good as he has been with being my caregiver….he should be getting steak, potatoes and veggies and gravy more often. I do order out once a week and use that priviledge carefully. I worry about starting to cook and then falling asleep and dinner burning or worse starting a fire so if I am not going to be able to sit right near the stove I wait till he gets home from work and then quickly prepare the meals. Getting my rest was the most important and next was eating good foods. Exercise was up toward the top of the important stuff too and I have a brag because all that rehab and exercising has finally paid off! I was showing my Mom what I could not do and told her I felt I was very close to doing it. I got down in the middle of her living room and was in that crawling position…..before I was not able to rear up into a kneeling position without holding on to furniture. UP I WENT INTO THE KNEELING POSITION! I held that position for a few seconds. I expained to her I was not able to do that before but I was getting stronger. Then I told her that I was not able to get my foot and leg under me to stand up by myself with out holding on to the furniture. I got my leg under me and pushed off my leg with my arms which are getting stronger and UP I WENT INTO THE STANDING POSITON! I almost starting crying right there and then! Now that is my ticket to go to Yoga class once I get it perfected by making smoother movements without a long hesitation. I might get up enough courage to go to Yoga class this Friday! I can not wait till Thursday to tell my Rehab Doctor the progress I am making!
For everyone don’t give up it does take time. Don’t give up! Take it slowly and get all the surrounding muscles strong and then you can concentrate on those that are in need of some prayer and extra special TLC! 16 months from onset and I am able to stand on my own! NOW that is a BIG BRAG! That bad shoulder did take almost 8 months to heal and I need that to get that crawl started. 🙂 😎
Hello Everyone!
[B]JayDee>[/B] Thanks that is the second dog I have lost since I come home from the hospital….this time last year I lost my old Yorkshire Terrier. It was fun having so many young dogs..real bummer since they are all about the same ages now. Each one is very special in their own way. This guy was another rescue that caught up to us and pulled at our heart strings.
I have learned to ignore the hands burning….I know it is the nerves and a few posts from the keyboard are not doing any damages….I keep them moving! The nerves get their rest and I keep the muscles moving! I can not give up my computer time….which really is not that much each day! But thanks for thinking about me….posts are just my way of remembering to do my exercises. I might not have any brags about them….I just don’t want to forget to do them all each day.
Tomorrow I will update my exercise routine and see if it is time to add any new stuff. I actually have seen minor changes in the past week….ENERGY LEVEL has increased….not as tired and shorter naps if any at all….hope this is not a fad and will become the normal. IT FEELS GREAT!
Hello Everyone!
cincymom Your daughter is still in the beginning of this process…is she having both Occupational and Physical therapy? Remember to check and see when your insurance renews….it might be from July 1 to June 30. That way she can use up all the 20 visits and mine gives me 20 OT and PT visits each. Then be off a few weeks and then continue. Remember this is a very slow process and it does really take time. Let her test every little muscle, ligament and tendon in her body and write down the ones that are tight and need stretched. The ones that need to be strenghtened and the ones that are cramping….they will help her with what she complains about along with the ones that are in the normal process of therapy.
Water therapy is wonderful. For those learning to walk it takes the weight off the body from gravity. It gives you freedom that is heavenly. But it can be dangerous till you get the upper body built up so you can keep your face out of the water. Just the water coming back into the pool will take a GBS person off course and throw them in the water. Waves from a class too will knock them around. It is very easy to over do it in the pool and not notice. Coming out once your body is under gravity your legs fell like they can not take another step. The pressure of gravity pushing down feels like a ton and can set off cramping. Your legs will feel like a wet noodle and so will your arms. The pressure can cause pain near the spine….really feels compressed like you have a barrel of books on your head. Most important it is not so scarey when you get off balance the water catches your fall. It will also build up the lung capsity by making you hold your breath for a few seconds as a wave passes by.
Personally I would use up the PT first and also try to do what they show here in that in the pool if that is possible. She can also do some of her stuff from dance in the water too. Most important is to teach those muscles to move even if an inch…that builds strenght…..the distance it moves will come with practice.
I am on my second round of 20 visit right now and they have used up 8 and I am saving the rest so I can get stronger so I can continue to do things in PT to make sure I am doing them the right way and not going to be injured or do them wrong and not get any benefit.
I have a membership in a large fitness club that is connected to our local hospital and when I am not in therapy I go to that. I do use the rehab pool (94 degrees) but do a class here or there in the big regular pool (84 degrees). Don’t let her go into the HOT TUB (104 degrees)!
Just the most important is not to over do exercise! I am doing all this but at 16 months past my onset.
Remember to keep a Journal! According to my Journal at the stage in time that your daughter is I was still in bed learning to feed myself and wash what area of my face I could reach. I was doing any movements in bed and no talk about me even standing at that poiint. Tell her we all say Hello. cincymom hope you know that the hugs you get are for being a great concerned care giver just not for being Mom! Keep her possitive attitude going this is a long process and it can not be rushed!
Hello Everyone!
[B]Cheryl>[/B] Nope Blue Fronted Amazon…..my buddy during the past 16 months with GBS. I wish I had him at the hospital with me to say Hello as someone entered my room! Sad news here yesterday I had to put my German Shepherd Dog “Coach” down yesterday….he has just turned 9 this month. He will be missed! I find the balance ball is very relaxing….I can sit on it at the computer and just let my balance work those tiny core muscles. I do slide backwards at times and sit in the hall way where I can hold on to both walls for balance. I can slide down it and have the ball rest under the small of my back and do a few exercises but I don’t keep up with the tape on the number of reps…..that speed will come as the stamina and balance gets better. I can get on the floor and have to crawl over to furniture or a wall and use that to crawl up. I can not come off the floor from crawling to the kneeling postion….I am having difficulty with this for months now….I feel it is holding me back. Strange part is I can lean over and pick something off the floor and stand right back up. The back is strong enough with the abs to do that. I can not just rear up from crawling and standing up without holding on to stable furniture is impossible. I used to be able to get up and down from any position….can you tell I am FRUSTRATED!?
[B]snevets82>[/B] Times like this I wish I was not right….hate to see anyone do too much….I just talk from experience…. I did not listen to my body ONCE and I colasped….last time I did that! Took naps and still do to avoid using up all my energy. Since then I have learned to pace my week not only my day. If I have done a little housework or grocery shopping…..I do back off the exercise routine that day. I let it all equal out over the week. I watch carefully my weekend because they can be off my routine and Monday I will pay for that…..so I rest often when family is home on the weekend. I let them pick up the slack! I do one wall instead of what I could do before. I can get a whole room done in a week…..worst thing is NO ONE even notices I did them. Went out with the girls for lunch and some shopping today to get my mind off loosing my dog and will not plan much for tomorrow….so far the stress has not caught up to me. I will back off on some of the exercise tomorrow too…..I might not do the floor exercises but go swimming and do the aeroblic classes in the water…..less energy is needed but the movements are the same…..muscles are still working….just not against gravity! I often do my walking in the water or riding a bike type peddling while sitting on a Noodle (kids foam floatation device).
[B]codystanley>[/B] Let us know what the Doctor says! I agree with everyone’s posts….still do your breathing and stretching and lenghtening exercises they will not cause any swelling, and probably will not decrease it either. This is caused by an underlying problem. I had to go to a specialist that treated the swelling. Don’t take a hot shower or bath during this time is what i was told. HOT TUB was out as were the Sauna and Steamroom. I just said, “OK”, but I knew my skin could not stand any of those things anyways. My hands even hated to do dishes! I use them too much and they burn and then itch. They also hate typing so I have cut back on the internet time too! They even hate to hang onto the telephone, so I had to cut back on that time too!
[B]JayDee>[/B] Funny you mentioned writing the alphabet with your toes. I had to do that too and I got good at using those bad words with my toes too! I even had a nurse or two when I was not able to speak say….slow down your feet and stop yelling at me! LOL I used to clap when the tray arrived with my meals….woman would just say…..”Your welcome!” “I will be back to pick it up later.” I would then wave Goodbye to them with my toes! I also had the Doctor grab my toes and tell me listen! LOL I had a good staff with a good sense of humor! After I got the trache out, some said they wish I would go back to using my toes….I was asking too many questions! LOL
Keep up the good work!
Hello Everyone!
Hello Everyone!
Just a side note: With kids it is hard to keep them tied down and not over do activities. They feel good they play hard…..they don’t feel good they push to keep up with friends. Watch the exercise before an relapse to see if there is a connection. Remember if there is any damage to the myelin it is leaking energy which will cause fatigue so 9 hours of sleep might not be enough sleep. The brain never seems to get tired and goes into what I call hyper thoughts that the body is never going to be able to meet those expectations. Kids fill their thoughts with what they want to do next….adults fill those expectations with things they have to get done! Responsibilities make it hard to listen to your body. Both ages have to learn to get on a routine that works for them and listen to your body! Over do exercise or activity levels will surely set you back a few days! Would be interesting to keep a Journal on Kevin to see if those times he declines are do to more activity days before. Just a thought! Hang in there it takes time for the body to heal. He is still in the healing process and no where close to knowing what residuals of this he will always have. Tests will show increase or decrease over a period of time. Listening to your body will be the best indication learned from listening to your body. That will change daily, weekley and monthly. He will definately learn to be patient! Take care of yourself Dawn, this is also hard on our caregivers!
Hello Everyone!
[B]JayDee>[/B] I have 4 or 5 tapes here that use the stability ball or the balance ball. I agree it is a inexpensive addition to any exercise program. I do the usual “sitting on the ball” exercises and I do them at my level. Some things come easier than others. That is how I expose the weaker areas of my body to work on. I also have been able to do most of the “lay across the ball” exercises and that does relieve alot of the tension in the core. I also have added the “pass the ball” exercises that also use tiny muscles as you twist and turn to hold and control the ball as you do certain exercises. Makes things interesting and also makes you concentrate on movements by just not going thru the movements but holding positions like you do in the Yoga routines. I also use the ball for a “weight bench” type support as I do my low weights for the shoulders and it is more comfortable and gives me more support than a stiff table would give. It is also more comfortable than getting down on the hard floor to do crunches etc. I can see why they were first used for rehab purposes. I struggle with the Yoga when it is one of those tapes that make you get up and down from the floor. I am better to do all the standing stuff and then the laying down stuff. I still struggle with anything that needs the upperbody strenght. Also the things that require ab support for my lower back strenght! Right now I am out of rehab because I am too strong to be at the level I am at and not strong enough to do what is required to get up off the floor to a stand position in the middle of the floor like what is required in Yoga. Not very relaxing trying to scramble to the chair to crawl up to stand. I am stuck in a rut! I am being held in limbo between levels of rehab. Grrrrrrrrr Not to mention rest for the nerves to heal and exercise to get the muscle strenghtened. Oh, Have I learned to listen to my body! I have a theory or motto to this process. I do work on my health first and let the house work get behind. Motto ” A hundred years from now, who will know or care that I left the housework get behind.” Laundry might not get done on Monday, but by the end of the week someone will need something washed and do it by Friday! As for the rooms being painted…I might be saving myself time in the long run. Fads in color choices will change by the time I get around to picking a color and get it painted. Look at the money I am saving on decorating! LOL
Have a good day!
Everyone> Work at your level and have a good day!
Hello Everyone!
[B]CodyStanley>[/B] GET BACK HERE! We miss you! Keep moving that is what we all are doing…remember exercise works muscles by stretching, lenghtening and strenghting….sounds like you are doing that then some!
[B]snevets82>[/B] Watch going for the burn, with GBS that can catch up with you and set you back if not set your body back toward an onset. Listen to your body. Working with the machines put a day inbetween those days to let the muscle heal. Sounds like you have a nice variation going for yourself!
[B]Cheryl>[/B] I love to play with cats they are so comic and quick! I love to watch two kittens play together too. I like to be entertained! Can you tell? I am trying to teach the parrot to hoot like an Owl! I may regret this lesson!
I left things alone last week with my exercise program and I felt good…..even added and got a few things accomplished around the house! Spring cleaning has started! I am making a HONEY DO LIST! Have a good weekend! Thanks for posting and keeping me honest! I feel like I struggle with trying to keep this exercise effective and interesting. I would like to add more swimming if I can to next week!
Hello Everyone!
[B]Peggy>[/B] Welcome you have been adopted by the GBS/CIDP family. Nice group and full of ideas and reminders and suggestions and stories. The information you obtain here will be different for each case but you will quickly pick up on the similarities.
[B]Diane>[/B] I am in my 15 month since my onset and basically have found what you have found to be what I am experiencing. Some things change within a week and then I notice they are gone when I read about them on the forums. So I agree with the Journal or Diary. I find the vibrating on the inside is very distracting and I can feel it just draining my energy level. My hands and feet burn some days. They are both numb but for the most part the needles and pins have been gone. If I hold my hand infront of me and watch my fingers they twitch! I am not taking any medications and do have a daily exercise plan that I keep a close eye on. When in PT or OT I will notice they are starting to pile on the extra weight or reps and I do what I can and make sure I never over do it! From the begining when the feeling started to come back I noticed that where I had pain was actually weak muscles. Abs are in terrible condition and that lets the support my back needs to cause those weaker muscles in my back ache. Same in the arms and neck. Now I make sure each and every tiny muscle gets moving and getting some strenght. If It does not it might cause cramps in the hands. Also the tendons have to stretch and so do the ligaments. I have found that a well planned or balanced exercise routine has really helped me. I also agree with you that from day to day things can change. I take all those changes as good signs of getting better slowly! If they persist I mention them to the OT or PT group….they have been wonderful with working on the tiniest muscle to the largest ones. Do you have problems with swelling in your hands and feet?
Hello Everyone!
False did not even buy any of his records! My friends all liked him and all I liked was to see him in movies. I know I am weird.
Next person is going to fly a kite in March! They did it last year too! I own many kites but have not taken them off the wall for many years. I bring them out to impress the kids….might take one out this year…we have some new kids in the neighborhood that have never seen us fly kites here.
Hello Everyone!
[B]Cheryl>[/B] You must not own a cat! They are above exercise programs! They just lay there and watch for a moth to fly out of your gym bag! So far this storm has been kind to us! Don’t do too much, give your body time to rest!
[B]snevets82>[/B] WELCOME! I am sorry for replying so slowly. I keep a little journal and add to it to keep a variety of exercises going. I review it on Sundays and see if there is a place I can add something to compliment my routine. I increase slowly where it will be most beneficial and complain constantly! Remember to pick something you enjoy for your exercise program. Glad you joined us to give us support….let us know where you need support or new ideas!
Today I reviewed my Journal and I am going to just leave things as they are for this week. My schedule with Doctor appointments will be about all I will be able to handle, without setting myself back! 🙂
Hello Everyone!
Hope everyone is working sincerly to keep an exercise program going! You are worth it!
[B]Cheryl!>[/B] I think you misunderstood this program! That dog has you trained! You are being manulipulated by Man’s Best Friend! We need to get you educated so you can train your dog. Dogs can be bad influences….they would rather be fetching couch potatoes….when the couch is not comfortable they rip it up! We are trying to get back to our dance cards and tear up a few rugs….not destroy the bed! I am worried about your program or maybe it is your manager or is he your personal trainer? LOL Please promise until we can send someone there to help you that you don’t drink out of the toilet!
I hope todays snow disappears quickly so I can just go get some fresh air with my crew of fetching fools!
Give Henry a big hug from us and he even has you as his secretary writing his secrets! Secrets of Henry!
My idea of getting out more is not going out in the back yard with a plastic bag!
Hope everyone is able to have an active weekend! Next week for those of you that are Cat Lovers we have a neck exercise that will help you look in high places and arm lifts to help get those height loving critters down from the top of the refrigerator! Hmmmmmm, maybe the dog will not be able to find me if I sleep on top of the refrigerator! Cats might have a good idea after all! Remember it is also warm up there that might warm up our feet and hands. Spring has to be around the corner….isn’t it? 😀
I didi my thing this week with the exercise tapes at home too tired to go to the spa and use the pool or the machines. Yoga tape is going to wear out! I did a little bit of walking too….just tried a variety of things this week….last weeks ice storm seemed to effect me more this week than last week. I wish people would clean up their parking lots and walks!
Hello Everyone!
Typing on the computer and just reading the boards makes my hands burn. I just take plenty of breaks and do different things. I do many crafts and like to scrapbook. They all take a toll on my hands. I will not give up those things I would not have anything else left to do every day. I don’t notice it as much when exercising because I am going from one task to another and not repeating stuff as much as you would doing crafts. Hang in there!
Hello Everyone!
[B]JayDee>[/B] I agree with missing the time we spent together on projects in the house and outdoors. The good thing about exercise that we do can be easy or at a different level…each day is different. I always say do less than you think you can do and just do it more often….the time all adds up but avoiding fatigue is the upmost important goal. Even on those days I call lazy days I still do stretches and the easier things I had in the orginal PT & OT. Might be basic but it does a body good to move than to just goes thru the movements! I make sure I get that little stretch or hold a position longer. Some days to my tapes, I do one exercise to every three they do it on the tape. But I am doing it! I am moving for 20 minutes! So are they! I also know it is very important to do something you enjoy. Some days I am on the phone more than others. I walk thru the house just walking with the phone. Some phone calls I get in a 20 minute walk and some I walk for more! I can use that walking as my warm up exercise or cool down time but I have enjoyed it. Like walking with a friend on a rainny day! Also I turn on the bright lights in the ceiling while doing exercises….tricks me into thinking it is a sunny day! Hard to get into the groove but easy once you start to move! I am also working on eating smaller portions by keeping on reading those labels and making better choices. My Journal keeps me motivated again too! 😉
Thanks for being my exercise buddy!
Hello Everyone!
Cheryl I have my ways! LOL But what worries me is how did you know I would still be here and have to admit that I would love to design a Japanese Garden but have never seen a Chinese Garden unless you mean the Rice Paddy in my back yard when it rains heavey! I even have the Koi that would love to live outside rather than in the house! I guess I have to say False on the Chinese Garden.
Next person lives in Canada!
Hello Everyone!
Hello Everyone!
Cara,
I know what you mean about loosing muscle! You will do great! I don’t know how you are able to do f/t that is terriffic! I am still struggling with getting this whole body in shape. I am working on everything slowly. Was doing something last night and noticed I could not do something, but forgot to write it down to find out what exercise would help that area. Now I have to wait till I do it again to remember what it was.! I am hoping this thread also helps me remember those tiny muscles. Oh the big ones complain [B]OUT LOUD [/B]so I can not forget them! LOL I am glad you are here to join us and don’t feel you have to post everyday! I know I am not able to keep up some days. One thing about exercise, is you can split it up into smaller times through out the day or through out the week! I pretend to run after the dogs to play and they just look at me like I have lost it! I have lost the grace out of graceful! 😡
Hello Everyone
Noon News 4 inches of snow since this morning and more on the way! It is coming down 1 to 2 inches an hour….only 25 degrees…if it gets any warmer we will be getting freezing rain. Roads are terrible and schools are all closed! Airport is open with delays! Winds blowing snow 15 mph.
Send Brownies with walnuts! I love this weather….hubby is all packed to go to the tropics……he hates it! We are about half way thru this storm!
[B]Brandy>[/B] I will try and keep it all here but you might get some ice….rather have the snow? Single digit temps by Thursday night! I think they said 5 degrees! Brrrrrrrrrrrrrrandy!
Hello Everyone!
Hello Everyone!
I like all the shows too! Next person actually uses some of the recipes from the cooking channel? TRUE! I like to try new things and am always looking for new things to try. I have collected cook books for over 45 years!
[B]New person can look out their window and see snow in their neighborhood![/B]
Hello Everyone!
While it is quiet I am going to live out my untarnished dreams that GBS does not spoil. GBS sets too many limits on my life, so I tend to day dream and have a few nice dreams during the night where I can make plans and actually accomplish what I planned to do! So here it goes! I have my housework all done and all my chores done at home. I wanted to clean up this place and put more wood next to the fire! Restock the snacks! Just give it a good Spring cleaning in here! Make it clean for Valentines Day crowd. Not to mention the NASCAR gang that will be watching speed week! Sorry if I made too much noise…..my dream is fulfilled….place is all stocked and clean! Enjoy!
Hello Everyone!
[B]Hi Liz![/B] Thanks for posting! That is the nice thing about exercise you do a routine that is customized for you and you don’t have to post here everyday unless you just want to let everyone know you did your exercises today and just wanted to say Hello! Like today I take Sundays off but I felt stiff from riding in the car yesterday. So today I am only going to do Yoga just to relax mentally and physically.
My routine is not exactly like yours and after reading your posts some of the exercises you are doing I did them in rehab in the hospital and some I am doing now. I know how much they helped me and hope you get the same benefit out of them as I did.
Since my neck is stiff today I will mention it to them in rehab tomorrow and they will give me something to strenghten my neck and shoulders! Also today my hands are burning so they might offer some suggestions to relieve that or put hot wax on them or cold packs depending on where they are bothering me…..or that might be gone by tomorrow. WHO KNOWS! I do know that vibrations from a car ride or running the sweeper makes them burn, so chances are this is from the car ride 45 minutes of travel each way is alot of vibrating and trying to hold my head from swaying back and forth. My truck is sure not a comfort ride! LOL I don’t want to give up that 4 x 4!
Each day I feel better but also notice when one area gets stronger then the weakness that is left really shows up. Then we take care of that…it is an on going process. I have only seen good benefits from it!
[B]JayDee>[/B] I know what you mean about taking care of family members and struggling to keep your own life and household functing smoothly. I consider myself in the slowlane now and think I am enjoying not seeing life fly by as quickly. I am getting better slowly and my world has slowed down some. I am taking time to enjoy it! Hope all goes better for you and your family!
[B]Everyone>[/B] Have a productive week!
Hello Everyone!
[B]JayDee>[/B] I think the idea of keeping a Journal is great! What I do is usually take Sunday off from exercises to give my mind a rest and only do some breathing and stretches. If I have cabin fever I might add something else but usually that is my day off to look back at my Journal and think where I can add something or is there a part of my body that is weaker than the others and I focus on finding an exercise that will increase that area’s strenght or flexibility. A few weeks ago I added some exercises for my thumb! Yes my thumb! Not just one of them but both of them. I went back to the OT and asked him if he could give me some things to help ease the cramps I was getting in my hands. Mainly the thumbs. They were taking turns cramping up and pulling the thumb right down to the palms. It was not a trigger problem and no clicking so he gave me a few exercises to try for a week and then report back to him. Glad to say that the spasms are fewer each day and I will continue to check in my Journal and write down any weird things I need to go over with my teams of Doctors. I still have one short tendon that runs between the hand and the thumb when I try to make an “L”. That is starting to stretch out also!
[B]Liz>[/B] I agree some might pass us by for right now, but your idea is good about putting the notice on the other discussions. If you want to do that while you are there….I would appreciated it! They listen to you more than me! LOL I was not sure where to put this thread and I know it will help others think about what they should be doing too! Look at you seeing results and working on rehab. I am proud of you! I also had problems even getting my legs to lift off the bed in the hospital and I worked on that alot in rehab. That was one of the areas that I worked on for months. Now they are working well but do need strenghtened. I am trying to be patient and work on getting my back stronger and my hips. I know I am not going to regret my efforts for working the larger groups of muscles, but also important not ignoring those tiny muscles. I hope you can get into a pool and just move the water around with your legs that really helped me to get those legs stronger if only by treading water. But there is nothing wrong with starting out laying in the bed. I just found working without gravity was easier when starting any exercise. Then I moved up the challenge in the pool by walking and actually marching around the pool. Leg lifts also helped me. A few to the rear and to the side while just standing in the water on the edge of the pool. Eventually a few to the front. They gave me a weight on the bottom of the pool to move forward with my foot starting out flat on the floor and sliding the weight forward….was pretty easy under water. Really helped with the stamina in my legs.
Everyone remember to get your rest! Exercise and your body will do the rest!
[COLOR=”Blue”]HINT:[/COLOR] Drink water to replenish what you used to keep hydrated, but to also flush the toxins out of the muscles and out of the body!
Hello Everyone!
JayDee I think alot of us here are in that generations that we have either had to be the caregiver to our parents or are very close to that situation. It is a hard position to be in between the older generations and the younger generation. Sure is hard to keep up the energy level both mentally and physically…to have this happen to me after being a member of a fitness club/spa …it was very hard and I missed it, now I am just about able and go back and join my friends in all the classes that are for all levels. They show you the different levels so we can all exercise together. I also like this place because there are many many seniors that go there! It is for families but they are not there when I am there. It is nice because it is open from 5:30 A.M. to 10:00 P.M. so I have no excuse to miss because I was busy. It is very close to my home also which is a big plus. I find that it is beneficial to me to relax me and I sleep better. When I get up I feel rested and ready to tackle a few things around here. Those exercise balls were actually first used in Sweden I think for their rehab programs. What a contribution to the medical world. I use mine while I am laying down in the morning and some of the things I do in weight lifting on the balace ball. They really do created stability in those core areas. We all can use exercises to work all those tiny muscles that cause cramping in our hands and feet and around our hips. It is nice that they come in different sizes according to your height. I can actually reach the floor better and they do help with good posture!
Today I did two classes in the pool (84 F), one for Arthritis and the other was for balance and flexibility called Ai Chi…..both were slower placed from the ones that were my favorites where we did aeroblics that worked in the upper body and lower body and cardio! Then I go over to the rehab pool (94 F) to relax and warm up! I stay warmer in the regular pool when I do the Aqua Aerobics classes…but don’t want to over do it! I will get back to the weights and machines tomorrow and hope to rest enough to joine the Yoga class in the late afternoon! I am really struggling with that class since I was in rehab and they did not teach me to crawl or stand up from being on the floor. I had trouble with an injury to my left shoulder while in the hospital and then fell against the toilet a month after I got home from the hospita. That arm is still weaker than the other arm and I do not push it with the heavier weights. But it is coming along nicely during swimming. I am getting there…..this is the year!
Hello Everyone!
I was still in the hospital and was told by one of the nurses to ask to see a Neuro-ophthalmologist. My Doctor wrote up the orders and I was in his office twice while I was in the hospital and then continue to see him over the last year in his office near my home. Remember GBS/CIDP and all the variants effect the nerves and the Optic Nerves could be effected. Also the pressure in the eye can rise and cause the periphical vision stays effected for many months. The field of vision comes back slowly. Also the nerves have to be able to heal some so they can make the muscles track together before the double vision goes away. I was given the suggestion to wear a patch but I also had bleeding in the eye and while walking I would completely loose my vision. So I did not want to cover an eye and have that happen while in rehab and trying to learn to walk! I was asked to use crayons and color in a large childrens Christmas coloring book and that concentration helped me with the focus. I was also told to look at the tiles on the ceiling and trace my numbers and letters with my eyes. Z was easy and the crazy 8 was hard it would make me dizzy or I would get nauseated. That taught me to slow down and concentrate on what letter or number I was doing. But now I am able to drive and all that stuff has improved greatly! Be patient!
Hello Everyone!
Thank you JayDee! 😀 I get tired at times and have to choose the computer keyboard or the couch…..you made the right decision. I work out with hand weights on Monday, Wednesday and Fridays and try to do a variety of things. Today I just stayed home and did my routine here. It is nice after 15 months I can see how I have slowly moved up from the 1 pound hand weights to a slower routine with 8 pounds. Does not take much water in a plastic bottle to make up a few ounces to start! I have come a long way! Tomorrow I will swimming and do some relaxing in the rehab pool! I do that on Tuesdays and Thursdays!
I don’t expect everyone to post every day, so that is why I said once a week would be a nice amount to just check in and see what everyone else has picked to use as their exercise!
Hello Everyone!
This morning I did my stretching exercises. Some were while I was still laying down for the legs. I continued to do several exercises for the upper body and breathing while I am sitting at the kitchen table waiting for my cup of tea! I did a few leg lifts and stretches for my spine or core working on my breathing the whole time. I have a tendancy to hold my breath when I do an exercise! After I felt like I was warmed up enough and limber, I got serious and turned on the radio and walked in place for a song or two while I watched to dogs run in the back yard in the snow. Brrrrrrrrrrr!!
I try not to do all my exercises all at once. I spread my exercise out over the day….5 minutes an hour….over 12 hours that adds up to an hour of exercise and most important it does not make me over tired.
Anyone going to join me? To be a family there has to be more than one member!! LOL Come on! Move it Move it Move it!
Hello Everyone!
Oh the temps and wind chill are dangerous here too! I think this is the best place to stay for the weekend. I dropped off all the snacks and meals for the Super Bowl Party…I am actually having a COLD Michelob and you know I don’t drink that much! Had enough hot tea and hot chocolate trying to keep warm. I am tired of hot soup and chili so figure the beer has to be the next best choice for this weekend!
Enjoy and GO COLTS!
Hello Everyone!
Hello Mary Ann,
I agree with all the posts….double check in your area you might be able to find a place that offers a regular pool that is a tempature you can find comfort. I try and use the regular pool (84 degrees) for the aqua therapy and as long as I am moving and doing the classes I am ok but when they stop, I have to get out of the water. I move over to the therapy pool which is 94 degrees….I am like, someone mentioned, I have trouble with the temps in the shower and can never get my bath water to the right tempature so I mainly take showers. I am not able to to take advantage of the hot tub which is 104 degrees at the fitness club where I belong. My exercise plan does enclude exercise and walking in the a/c or mall. I don’t do well with the heat either. The wind chill here is 10 to 20 degrees below zero this weekend and hubby cranked up the wood stove….I am not dealing with it very well. I spend most of my time in the cooler parts of the house. Don’t be afraid to customize your exercise program to what you are able to do. Right now I found the stores don’t take in consideration that we are wearing coats right now and they have their heat up high also. Just just wear a sweater in the malls and stores so I can walk in comfort but leave the coat and scarf and gloves in the car for safety. That way I can just take off a layer to get comfortable but not have to carry around my heavy coat. Some malls have lockers you can rent too! Just don’t drop the exercise we all need that. After too much of walking my hands and feet swell…I just do other things but keep on exercising and give the feet or hands a break. Basically it comes down to listening to our bodies! I found that my endurance has actually come along better by walking longer in the pool because it is less effort in the water, so that is a nice trade off that has great benefits. Good luck with your exercise program.
Hello Everyone!
Tim don’t stress out of this and I know how hard that advice is to hear. Keep a journal of stuff you do and set a routine. You then can see what you did and how it effected your body a day or two later. That will help you pace yourself and alert your therapist to design a program for you. It will teach you just how strong or fragile your body is. If I did an exercise wrong or did it for too long I payed for it. Informed them of what occured and we went from there. I did not take a prescription but did use Motrin to take control of the discomfort. The next visit they would use ice or heat and massage in that area to relieve the pain. That brought me thru some very tough times. Do they so any kind of warm up exercises and cool down exercises. Those are also important to keep from getting sore. Also exercies in a heated pool reduced the amount of soreness I got. They even used ultrasound to help with different problems I had in areas. They manually manipulated my body to just stretch and move mucles that lacked memory to get them moving. Remember your muscles are receiving terrible messages from the brain and they are trying to translate them to repeat those movements. They are working overtime trying to get moving. Your nerves are wasting so much sending messages to the muscles that only get scrambled before they get there. Pace yourself, listen to your body and communicate with your therapist! I have been in rehab for 13 months working on getting better slowly. Good days I work against gravity and on other days I just work out in the pool. I think we all have bad and good days and vent about them here! Remember your brain can be your worst enemy. It is always thinking about how you were….it took me many months to have dreams that encluded the fact that I had GBS. Tiny steps forward slide back a few is what we all have been thru. Take care of yourself and visit here often….keep a possitive outlook and learn from these setbacks and accept the residuals….they will soon get less and less. Look at all these events as possitive measures that you are getting better and will have to fight your brain so you don’t over do it too often. You have just lost one battle not the war!
Hello Everyone!
.
[B] Doggie Contest[/B]
Three handsome male dogs are walking down the street when they see a beautiful, enticing, female Poodle. The three male dogs fall all over themselves in an effort to be the one to reach her first, but end up arriving in front of her at the same time. The males are speechless before her beauty, slobbering on themselves and hoping for just a glance from her in return.
Aware of her charms and her obvious effect on the three suitors, she decides to be kind and tells them “The first one who can use the words “liver” and “cheese” together in an imaginative, intelligent sentence can go out with me.”
The sturdy, muscular black Lab speaks up quickly and says “I love liver and cheese.” “Oh, how childish,” said the Poodle. “That shows no imagination or intelligence whatsoever.”
She turned to the tall, shiny Golden Retriever and said “How well can you do?” Um. I HATE liver and cheese,” blurts the Golden Retriever.
“My, my,” said the Poodle. “I guess it’s hopeless. That’s just as dumb as the Lab’s sentence.” She then turns to the last of the three dogs and says, “How about you, little guy?”
The last of the three, tiny in stature, but big in fame and finesse, is the Taco Bell Chihuahua. He gives her a smile, a sly wink, turns to the Golden Retriever and the Lab and says, “Liver alone. Cheese mine.”
Hello Everyone!
[B]Gone to the Dogs [/B]
There was this man that had a dog. He came home one day, and his dog was belly up with its legs sticking in the air.
He wasn’t sure if it was dead or not, so he took it to the vet. He told the vet of his problem, and the vet said that there was a sure-fire way to see if the dog is indeed dead.
He left the room and returned with a cat. He rubbed the cat in the dogs face, and after a while came to the conclusion that the dog was indeed dead.
The man was upset and asked the doctor how much he owed him. The doctor said, “$550” The man was stunned. He asked the doctor to explain and the doctor said, “Fifty for the visit, and $500 for the cat-scan…”
Hello Everyone!
[B]Seeing Eye Chihuahua [/B]
There’s a guy with a Doberman Pincer and a guy with a Chihuahua. The guy with the Doberman Pincer says to the guy with a Chihuahua, “Let’s go over to that restaurant and get something to eat.”
The guy with the Chihuahua says, “We can’t go in there. We’ve got dogs with us.”
The guy with the Doberman Pincer says, “Just follow my lead.”
They walk over to the restaurant, the guy with the Doberman Pincer puts on a pair of dark glasses, and he starts to walk in.
A guy at the door says, “Sorry, mac, no pets allowed.”
The guy with the Doberman Pincer says, “You don’t understand. This is my seeing-eye dog.”
The guy at the door says, “A Doberman Pincer?” He says, “Yes, they’re using them now, they’re very good.”
The guy at the door says, “Come on in.”
The guy with the Chihuahua figures, “hey why not?,” so he puts on a pair of dark glasses and starts to walk in.
The guy at the door says, “Sorry, pal, no pets allowed.”
The guy with the Chihuahua says, “You don’t understand. This is my seeing-eye dog.”
The guy at the door says, “A Chihuahua?”
The guy with the Chihuahua says, “You mean they gave me a Chihuahua!?”
Hello Everyone!
[B]Beware of Dog [/B]
Upon entering a little country store, the stranger noticed a sign warning, “Danger! Beware of dog!” posted on the glass door. Inside, he noticed a harmless old hound dog asleep on the floor beside the cash register.
“Is that the dog folks are supposed to beware of?” he asked the owner.
“Yep, that’s him,” came the reply.
The stranger couldn’t help but be amused. “That certainly doesn’t look like a dangerous dog to me. Why in the world would you post that sign?”
“Because,” the owner explained, “Before I posted that sign, people kept tripping over him.”
Hello Everyone!
Hello Everyone!
When I was being educated about GBS I was told by a friend that has a severe case of rheumatoid arthritis and she does have very similar things happen to her during a flare up! Oddly enough her Son had GBS from the waiste down about 9 years ago and still has some fatigue in his hips when raking leaves or doing things he normally does not do. He has 3 kids and is very active with his family. I was also told by my Doctor that I should warn my Son that Autoimmune diseases are heriditary and I should warn my Son! This is the kind of stuff that further study and education will help get the correct information out to the Doctors quickly so that the correct dx can be made. We are doing a great job of keeping the word about GBS current!
Hello Everyone!
Not sure if you mean just CIDP, I have GBS and I never took any meds for pain. I also have to say that I think my tolerance to pain is higher than most people. Any discomfort that I have had was not consistant and never predictable so I could not see taking any meds for something that turned up here and there. Needles and Pins, burning, itching, zings and zaps. Cramps in my hands and feet. Electrical shocks that flew up an arm to the finger tips to burst like a fire cracker and then nothing! Same kind of shocks that went down my legs to explode at the tip of a toe! I have had very few headaches and any weakness in muscles like my back that was severe pain relaxed instantly when I sat down. Hope this helps and if not what you want it will be useful to someone! That is the great thing about this site! Take care everyone! 🙂 I think if I was going to have the cronic form it would have given some evidence by now?
Hello Everyone!
I had back pain in the hospital and it has returned 13 month later. I thought it was due to weak muscles not holding everything together and my rehab doctor sent me right back into rehab. There they said I have a rotated bone in my pelvis that is giving me trouble. I am back on a exercise program to take care of any core muscles my daily life seems to be missing. I also asked to increase my upper body strenght and also teach me how to get up off the floor or ground if I should stumble outdoors or at the store. Again that is due to muscles that were skipped over in my daily routines and/or some confidence in my body not being as strong as I think it is. I have found other times were I did not think I could do it but with some instructions I now remember how I used to do things. I am still not good at crawling but that is now coming along fine. I think they skipped the crawling before I would stand and walk because I had an injury to my shoulder from a fall when I got home. Plus I was picked up by my arms to get me back into the bed right after I got into rehab and the second day there they over worked me and my legs colasped. They were not able to get me off the floor. 6 Times they attempted to lift my by my shoulders to put me back into the bed and from that injury my arm was locked in the “down at my side” position. Making crawling like a three legged dog impossible. Since then the rehab was not able to unlock my arm. I went to my Chiropractor and with a few treatments he had it unlocked. Now I have got those muscles stronger but just not strong enough. Each case is different and that is why I slipped out of bed or the chair to walk instead of crawl. I also remember having neck pain at the end of the day because my muscles were not strong enough to hold up my head for long periods of time, especially in the car with all that wiggling you do when riding around corners and pot holes. Not to mention the vibrations from the car. I take all those pains as good signs that just are ready to heal. Don’t ignore them as a residual of GBS which they might just be, mention them to your Doctor they can tell if it is in a location to be concerned about. 😎
Hello Everyone!
I think that we all agree fatigue is something we all complain about. Some of us got too confident and pushed too hard only to have their body remind them to slow down. Remember to exercise a hour day you can break it up into segments if necessary 5 minutes an hour for twelve hours adds up to an hour of exercise. We all lhave to learn to pace ourselves and only do what you are capable….if at first that is only 5 steps or to walk across the room…that is exercise that is the foundation you build from. If you feel pain…immediately stop! Eating healthy does not mean just eat from one of the food groups it means to get a well balanced diet from each food group. Same with exercise. I agree with Judi the Yoga is harder than it looks, but the benefits are a well balanced workout! Walking is the most balanced workout for the total body. It can be done inplace, outdoors or inside the mall. Most burn out because they push too hard….they take the enjoyment out of exercise. I started doing exercises in bed in the hospital then gradually moved to the floor and parallel bars for support. Then at home for practical rehab and then off to more out of home rehab…walking up the street without my walker….only walked to a friends but I was able to do that with a big smile on my face…..she was layed up with a ankle injury that required surgery! I walked up to cheer her up. We yelled to each other thru an open front door. I could not make it up her steps and walk and up the steps to the livingroom and she would not come down to the front door! but what a brag for my hubby when he come home! Then off to rehab for PT and OT where I worked out on the bed, wall, chair and in the pool. Now I have no restrictions on me but still use common sense to build up my body slowly. 14 months after the onset. I still have the fatigue and I do take long naps. I also had trouble with my nights and days getting mixed up but that is now traveling back to the normal routines. I worked slowly to set up a schedule for the week and try to do the same thing each day so I don’t get over whelmed. I do not have as many responsibilities and give many on this forum credit for how they have managed their lives. There is just not one answer that will work for everyone. I am surprised when I have a busy day that could not be helped because of tests and appointments. Sometimes it makes me go sit down in the evening and forget about housework. Sometimes it reminds me to take the next day slowly. Some times it knocks me off my feet a few days later. I just have learned to back off and not do what I think I can do! I do what I know I can do! Good luck with figuring out what you are able to do today….tomorrow is another day!
Hello Everyone!
Hey your not alone in feeling blue! I am in the same situation as you! It just seems I can not finish anything I have started. [LIST=1]
[*]I don’t have the stamina either!
[*]I don’t have the concentration to think things out all the way!
[*]I can not get done in a week I used to get done in a morning!
[*]I have to consistantly ask for help! I feel like I am a burden but they insist that I am not!
[*]The fatigue is what stops me from at least cooking anything that needs time to cook. I am afraid that I will fall asleep while sitting in that chair and catch the house on fire! I have burned dinner twice in the last year!
[*]I want to clean the house but can not do that like I used to! My back just will not take picking up and carrying stuff. Not to mention I pace myself on how many times I have to climb the steps.
[*]Friends and family just don’t understand how I stuggle each day! Not to mention I thought I would never say: “I want to clean the house and fix dinner and stop being a burden on my family”
[*]But when I talk about how I feel they just don’t seem to understand since I am not limping or crying out in pain. To them they can not feel how I am feeling on the inside. When I started to walk without the cane they declared me healed!
[/LIST]I don’t have the strenght to do what I used to, but I think it is time to open up the comminucations and let them know that I am able to do more but still need help in other areas. Please don’t give up on me!
So I hope you are not alone! We all have goals we have not met yet!
Hello Everyone!
I had been under stress, but they think it might of been a Sinus infection that was not bad enough for ME to go to the Doctors. It got better on its own and the GBS followed that. Ofcourse not scientific but makes sense to me! Did not receive a flu shot and watch my food is cooked properly like chicken and eggs. I had read that cats and dogs and birds can carry something that people can catch and that could lead to GBS. I do have those pets. They were most of the inspiration to get home quickly! Not to mention to take some of the work from my caregivers and their support team that were worried about me! I had no surgery to trauma. I know this is not much help! But we have all went over this question many times!
Hello Everyone!
Can you tell if it is nerve pain or muscle pain? Tendons and liagaments also can cause pain. Are you in an exercise program? Keep a Journal to see if it is just connected to resting at night. Rate it from 0 to 10 ten being the worse….6 being time for meds. As crazy as Vicks sounds and Irish Spring soap bar under your sheet near your feet. Have you tried ice, heat or massage? Just hang in there and someone will come up with something that might give you relief. Most of my stuff I had questions about dissappeared within a month or two of the problems start….like pain in my wrists like tarpel tunnel. It would wake me up and I would reposition my hand to straighten out my wrists would let me go back to sleep. Have you tried putting a pillow under your legs when they are acting up? Just don’t let them tell you that there is no pain with GBS/CIDP.
Hello Everyone!
Hello Everyone!
Hello Gloria!
Welcome to this forum and I hope you find some comfort here that you are not alone. We all have ups and downs and we manage to work thru them at our own pace. I found so many possitive things in your post showing you have Hope and Patience and are thinking thru this whole process. We all have shared those experiences and many of the ones here have multiple things they are dealing with. You will be a great addition to our family. I know you have already showed me to not give up and accept the level that I am in and you might have to slide back to using a cane or a walker or a wheelchair but you work forward to taking those small steps to reach for that independance. Please keep posting and using your possitive method of getting thru all the things that life throws at us. Wouldn’t it be nice if there was no paperwork to do to get what we need. You have accomplished alot to get yourself assistance.
Hello Everyone!
I just wanted to tell you to hang in there and I understand your frustration. Don’t let this get you down. Rest and do what you can to get better. You deserve all this attention to get you back to feeling well. If you do have GBS or one of its variants it takes time to heal. Work on patience and don’t give up, keep pressuring them to find out what they think is wrong so you can concentrate on getting better. I hope that the hot tub gives you some peaceful times and relaxes those muscle that overwork to move us around when they are weak and struggling to gain strenght. Don’t over do it but just don’t sit back and do nothing.
Hello Everyone!
I found that the exercise pool (84 degrees) was ok if I was doing aerobic exercise but once I stopped moving fast then I got chilled. My first showers are 78 degrees and I thought that was hot. Rehab pool was kept at 94 and I enjoyed that but muscles that were not strong were completely relaxed but I did get out of the pool but the walk to the dressing room was slow. Come home and took a long nap after being in the water. Which I think is normal. Most problem and is still ongoing is the hot tub (104 degrees) I go in and it does not feel hot which I know it is…..then after 5 minutes to relax my muscles the nerves start to burn, needles and pins, sparks and the muscles start to vibrate. I have not done that for a long time now! Everyone just be careful. Don’t stay in there for more than 15 minutes and take a partner! Just like swimming don’t swim alone! Depending on your body strenght that current can keep you away from the steps. Better safe than sorry! Enjoy for those of you that can!
Hello Everyone!
Angela I love your post it was great! Great Advice and well written! I like this phrase you used too! I have heard of “Stress Management” but your post about: “[B]Energy management[/B] is a must and rest can never be stressed enough. Even if you don’t feel tired you need to rest. By the time you feel tired it is too late and it will take much longer to recover. Not only do you have to watch your physical activity you have to be aware of your mental activity, it can be just as exhausting.” Will be quoted often too! 🙂
Hello Everyone!
TRUE
This time last Winter I was not able to go down to the family room where our fireplace is. This Winter my husband could not wait to get the wood stove going. I think that will make me too hot all the time and I will have to go into the guest room and shut off the vents and keep the door shut! During the past Summer I made a fire outdoors in the evening just to take the chill off and extend my time outdoors.
Next person has reservations for their 2007 vacation all planned.
Hello Everyone!
I still have the swelling in my hands and feet also and the burning skin that I don’t know whether it is itchy or burning till I touch it! I agree they say the longer nerves are the last to heal and that is the ones in the arms and legs. Guess we will just have to listen to our bodies. I agree about the good fitting shoes with lots of support.
Sounds wonderful to be walking on the beach again! Winter has set in here. The Beach Parties at the fitness center just are not the same. No beautiful sunsets and sunrises! Put on a CD and listen to the waves and close your eyes and listen to the surf. Give those feet a rest when every you can!
Hello Everyone!
Mari I would wait and contact his parents about getting permission to make that post here. It would be traveling around the world and due to the privacy act and idenity theft I would not do it until them. The newspaper also had to get permission.
It is amazing how many tools are out there to help people. Depending on their needs there are variations too!
Get out a childs coloring box and crayons and use that. It works great for coordinating the eyes and the muscles and the messages over the nerves inbetween. Depending on the amount of damage that might be an area that needs to heal better too! Keep up the great work!
Hello Everyone!
When I first started using the computer and doing my own research to read about GBS I had read and I am not sure where I read this because I have not read it again. The most common cases of GBS are in the North East USA and during the Fall and Winter. Mine started in November 2005…..I will continue to read this thread also for posts.
Hello Everyone!
Welcome to our networking family. Sorry you have to join us but use this site to your advantage. You will read and we can warn but being human as all of us are, you will have to figure your body out for yourself. I can tell you that you will have the fatigue as a residual but it gets better slowly you will feel you are doing better. Then we have a tendancy to over do it on those good days and slide right back to a level that reminds us to listen to our bodies. Build up an exercise program. At first work on stretching and range of motion and all that easy stuff. For our bodies it might not seem like much. We still use our memory to tell us what we used to be able to do. Now we have to again find a comfortable place to start over and add to as often as you feel you are getting the amount of sleep your body needs to rest. Remember you have responsibilitys and I am sure you are keeping a busy schedule with children around. Housework and routines that we can not drop. Tend to those and get help if you need to….the rest will come! You will find soon enough we will look good to others on the outside and they will tend to back off from helping us. They will not see the mixture that is going on inside as our bodies heal slowly. Relaspes are not pleasant but they serve a good purpose to remind you that you are going to have to put YOU first! Are you receiving any kind of rehab? Welcome HOME!
Hello Everyone
Oh I was like a kid at Christmas when Rehab started to give me tools to help me be independent. My first, they gave me a [B]sippy cup[/B], with DOUBLE handles!! When I was strong enough to control it and get it to my lips I thought I was SO COOL! The end of dribbling water down my chin after each sip to take a pill arrived! Signaling the Nurse to tip the cup back and getting splashed in the face was GONE! I had went to a different level and had a big brag! I no longer had to ask for a sip of water, I could hold my own cup and drink when I wanted. OK so they still had to fill it but they were good about that and happy for me and how excited I was to be independent.
The most personal and liberating tool was the one that holds your toilet paper for you! That brought back my privacy that you loose when you are in a hospital. Also saved my caregivers at home from that duty.
To recieve my own [B]walker[/B] was great! They gave me the [B]pocket[/B] to attach to the front so I could put personal items in there too! I received a [B]long handle sponge[/B] for in the shower. They also gave me my own [B]cane[/B] later on before I come home.
But the best stuff was the things that helped put on my socks and the [B]metal long handled shoe horn[/B]. The tool that saved my caregivers lots of time was the spring loaded thing that was like fingers to pick things up that I dropped.
I did not know most of this stuff was available. They gave me a catalog with all the available things that would make my life easier. I went thru that and seen things that turned out to be some of the best inventions. Spoon, fork and knife with huge easy grip handles. Tooth brush with the same handle. Some had a loop for the thumb to help with the grip too. I also had a long handle with two different kinds of hooks at the end….they helped with getting dressed or picking up things or holding clothes as I got in them like my slacks.
After I got home then I received a [B]porta potty[/B] that made a good chair for in the bedroom as I got dressed too. More stable than the edge of the bed. The [B]transfer chair[/B] with a back that helped me get in and out of the tub and I could use it in the shower.
Kudos to the people that invented all these things for people that need independence with living.
I am sure you have other needs just mention them and one of us has had a tool to help aid us in that problem.
Have a GREAT Day!
Hello Everyone!
I make sure I don’t over do it at the gym, but I do have a regular routine that I follow. Whether the exercise is giving me a job and a purpose to life. Or it is giving me mental exercise and getting me around other people that are seaching for the same thing. I come out of there and I am relaxed. I feel like I have accomplished something. I come home and get something healthy to eat and I go lay down and rest. But I feel like I need rest not like I am so tired or fatigued from doing nothing. I have accomplished something that is going to help my body stay healthy until my demyelinating is totally reversed and healed. When I wake up I feel like I have slept well. The rest of that day I do my regular routine and feel great! If I was suffering from pain or sore muscles I would not quit going I would just make an adjustment to my routine. Listen to your body. Remember everyone is different! This keeps me in shape as far as my breathing, balance, range of motion, circulations, stamina and strenght is constantly increasing. I ramp up my routine to the next level or add something that is more interesting and keeps me moving and being active! Personally for me I can not imagine where I would be without exercise. I would probably be a couch potatoe. But remember you are talking to someone that requested a good lip reader to come into my ICU room and tell my Doctor I had a leg cramping up that it needed stretched by someone from PT. Just move it I told him! Jake moved my legs back and forth a few times and also my arms. I was satisfied and so where the muscles. They were not able to move on their own but after moving I did not have constant pain in that leg either! I really thank my Doctor for going to bat for me and listening to me! I hope this has inspired you to continue to be as active as your body will allow and don’t be afraid to ramp up your routine as you feel you are able. You can always back off a few steps to let your muscles catch up. Make sure you give your body time to heal between routines too. Drink plenty of water to flush the muscles and remember to warm up and cool down.
Hello Everyone!
I thought my recovery was amazing. Nice to see others that did well quicker! I come home after being able to walk to get me from the bed to the bathroom….they really wanted to see at least the lenght of my house. Coming home really depended on walking up and down steps. I was not able to lift my feet up to get into the tub, never thought about it until I went to get into the car. I could not get my feet up into the car and with running boards and short legs the seat was too far back to actually fall into the car. I was determined to get home and they brought me a step that was lower that I used to get into the car after 30 minutes of panic! Got home and was not able to crawl yet. My upper body strenght was so poor that I could not lift my shoulders off the bed with out using a strap that had a wire in it and it went around my foot to help pull me up out of bed by straightening my leg and pulling against that strap. I always had a fear that I would fall during the day and being at home by myself I had to ask the Physical and Occupational therapists to show me how to get down on the floor and how to get up. I had lots of trouble going down and much more coming up! I still practice laying on the floor and getting up. I do not do much crawling but I do remember the extremem pain that was in my shins and knees. I think that might be why they did not make me crawl until I got home on a rug and I got more upper body strenght. Now I am still working on strenght. Pushing away stuff with my arms is easier than pulling stuff or lifting or pushing stuff up to the top shelves. Slowly lowering things is also one of the things we did not do much practice with. Things are slowly getting better, but I was surprised to see that you had to crawl to come home. I would have been in the hospital for a few months more if that would have been me! Over Summer I was able to put my butt pointing down the hill and actually get myself up into the stand. If I don’t have the assistance I am still not strong enough to stand up without pushing up on a table or chair or the bed. I am back in rehab trying to get to the next level after I let my strenght catch up to their demands. By Summer or even Spring I would like to be able to stand up in the middle of the room or out in the yard. Keep up the great threads! Be happy and work consistantly, remembering the patience! This is not a race and speed right now will not help us! Thanks for the support and encourgement!
Hello Everyone!
Welcome John, I am sorry you had to seek the information from this forum under these conditions. You will find it is a very close group that have gone thru a lot like you have. We can never say enough about the caregivers and their patience with us. Are you still having regular Doctor visits with your Neuro? Have they offered you any aqua therapy? Balance is important part of standing and walking. PT should continue to get your legs, hips and back stronger. Also needed to walk you need to have some upper body strenght to use the waker or cane or even the wheel chair. Occupational therapy should also still be working with you for the things you need to do to take care of your daily needs. Hang in there and be patient we all are getting better slowly! How are you doing with the fatigue? Did they stop all the IVIG treatments? Have you received Plasmaphresis Exchanges? On any pain meds? Did the GBS effect your digestive system at all? I had to receive a food tube. Your swallowing was not effected?
Hello Everyone!
Mr. Rogers Neighborhood already exists right near Pittsburgh, Pennsylvania! It is under the rule of King Friday XIII. I am sure with all their patents and copyrights you well be in a severe legal battle in the Court of Make Beleive! I suggest that you avoid any further fines, fees and court costs by renaming your kingdom. No one has been pardoned or exonerated from the legal binding documents that are on file at our court house and also can be find in the Smithonian in the pocket of the Royal Cardigan Sweater! I suggest that all documents be Notorized by X The Owl and rather than use Registered Mail the delivery service of Mr. McFeely would be appropiate! All forms should be filled out and deliever the Orginal to King Friday XIII. Also copies should be given to the rest of the royal family in pure gold ink.
Queen Sara Saturday
Lady Elaine Fairchilde
Prince Tuesday
The following members of the community will be your jury if you decise to go on with this hopeless law suit.
Handyman Negri Will reside over the court room and serve as Judge
Cornflake S. Pecially is head of the City Planning Committee
Daniel Striped Tiger Has a copy of all the Kingdom rules and laws
Donkey Hodie is the Clerk of Courts
Dr. Bill Platypus is head of the Zoning Committee
Edgar Cooke is the District Attorney
Grandpere Is our County Treasure
Henrietta Pussycat is our Animal Control Officer
Neighbor Aber also is the Municipal Waste Management Officer
Chef Brockett can make a great lunch if requested
François Clemmons share the job of Wardon of the Jail with
Robert Troll who is also the Truent Officer
See you in the Land of Made Mistakes…..Beleive it or NOT!
Trolley rides are available the day of your hearing!
Hello Everyone!
It is the cause of much more than you realize. Smoking has a great effect on your blood vessels….dizziness could be cause by poor blood flow. Also could be a side effect of poor breathing….effecting the amount of oxygen you are getting into the blood. Headaches too! Fatigue is the big residual of GBS but can also be compromised by smoking. Short of breath and poor circulation all will result in fatigue. Besides until the mylin regenerates, your nerves are leaking energy and the muscles are not getting the right signals. So it can be a combo of things! My body needs 10 to 12 hours a day to just feel tired and not exhausted….any more than that starts to make me groggy so I figure that is too much! My naps last from 2 to 3 hours! No longer can I take a cat nap and be ready to party! Watch the sugar intake too that can wipe out your energy too! All goes back to making good choices!
Hello Everyone!
I agree with everyone and I would keep intouch with your Neuro they are current in new medications and have more patience to play with doses. You did not mention if you are doing any stretches and have a daily exercise program. Taking time for you to just breath and have ME time would be beneficial too! Yoga or meditation is good for range of motion and helps us focus on us! Does not have to take much time but might help with the cramping if it is muscular. Also there are some good foods that help with cramping and I have also read that some drink quine water or take quine pills and your Neuro can help you with that amount too but that does have side effects. Asparagrass is what I was told to eat. Can you tell I eat it all the time? 😀
Hello Everyone!
Welcome! I can remember anything with a texture make my feet burn and boy were they tender! Each month that has got better and better! The bottom of the pool does not feel like sand paper anymore. The carpet does not feel like a scrub brush. A crumb on the floor does not feel like sharp glass as much! Last Winter I wore out my socks and slippers. Now I can feel some tempature especially warmth from a blanket across my feet. When I get a shower I still have a feeling that I am wearing my socks into the shower or tub. I still have some burning and they swell, not as much when I wear my shoes. I have always been a person that went barefoot all year round. But now I know they are still tender and I try to remember to wear socks or shoes. One thing I have found it that my feet don’t sweat! Like Liz says we are not giving up but no one knows where we will end up and what residuals we will have with the GBS/CIDP. Hang in there and pamper those feet!
Hello Everyone!
michelle I remember hearing and reading several times that the places that were first effected are the last to heal. The nerves repair themselves very slowly and those areas that you mentioned hands and feet are the longest nerves in our systems. I think it is a good idea to check with your Neuro and talk about medications….many of the ones here to take them for the pain. I have those residuals that you mentioned but I am not in enough pain for me to warrent medications. I have always had a very threshhold to pain and at this point I have not hit that degree yet! I have been having pain in my back and am back in Physical Therapy for that and within days the massages are helping with a rotated bone in my pelvis area. Ultra sound treatments and then backing that routine with exercise to strenghten those areas that hold things in place. Still need some strenght in the abs and back muscles.
I think it is fantastic that you have returned back to work! Keep up the good job! Hope you get back to a comfortable schedule soon!
Hello Everyone!
JayDee you have great ideas and a good attitude. Eating healthy and watching portion control is the best advice all of us can start with in 2007.
Smoking you know that is a no no and I stopped cold turkey. Going on a ventilator was extreme and so was being totally paralized! Have not had a ciggy for 14 months. Also you might see that the dizzy feelings go away when you quit. When you smoke you are putting chemicals into your body and as you come off them when you quit you might notice some nerveous energy. Don’t go back smoking, but replace that urge with something like exercise. Not eating, that is how many gain weight when they stop smoking. When I got GBS my Brother gave up smoking and he took up eating, agained 35 pounds. Now he has that to drop! He is not as young as you and has alot of bad eating habits to over come!
[B]You know to consult a doctor before doing any exercise program. [/B]
Start out slow and do exercises to benefit all areas of your body. Upper body, Lower body and Core, but don’t forget those tiny muscles all over your body! Stretches are good to start with and also range of motion. Remember to warm up before and cool down before you end your routine. That will help you to avoid injury! Make sure your program encludes things you like to do or you will not stick with it! While you are feeling fatigued you might want to walk rather than jog to start with. Change off your program to keep it interesting. Do weights three times a week and you are not out to become Mr. Universe or break any records YET. Just give those muscles their strenght back. Slowly increase your routine and later add some jogging while walking. Not too much! Listen to your body! You over do it or you just might find yourself getting a set back with your GBS. The other days walk and enclude something else you enjoy like Basketball or Washing the car! Give those muscles time to heal in between lifting weights and working on the machines if you go to a fitness club or gym. DO NOT LET THEM TELL YOU WHAT YOU NEED TO DO…..they will push you too hard if they do not understand GBS. Have a dog? Walk the dog, if not borrow a dog they are girl magnets! They cuter the pup the cuter the girls! Did I say that? LOL If you find that you get too tired doing land exercises try working out in a pool in an aqua aerobics class or do laps with a kick board. Don’t try to swim where their is a slight current, some of us have found that even the water coming back into the pool from the filter is enough to push us off balance at first and put us out in the deeper water. Floating devices give you some extra help to keep you from being fatigued quickly. Hot tubs are not recommended but a slightly heated therapy pool makes it easier if you are not moving quickly. Since you might find that your body is not able to regulate its body tempature and you will find yourself getting chilled.
Please let us know how you are coming with your exercise program and I think we all can benefit from your youth and attitude on getting fit! Remember some of us will be exercising from our wheel chairs! But that is ok you can Sit and Be Fit too!
You and others might benefit from this site that Liz passed on to me and it is my gift to others. Please pass it on for ideas and the correct way to do these exercises. [url]http://www.health24.com/fitness/[/url] Click on the “FITNESS” button and then on “Exercise” and pick out the ones you know you can do making sure you are not just working one area! Go for total fitness and improvement for 2007. Personal trainers are even better if you can find one that is familar with GBS.
Remember GBS stands for [B]G[/B]etting [B]B[/B]etter [B]S[/B]lowly!
Hello Everyone!
Annie, this is where a lawyer can move things along quicker. Notary would have been there quicker. If you yourself can not move things along then you have to turn to those who can. The great thing about the forum your messages will be here for others to see…chatrooms usually are live and don’t keep old posts. Our chatroom is missed it gets us intouch with a live person and you get answers quicker but the message boards or forum get ideas from everyone!
At the time of the second onset what kind of treatment did he receive? Results were good? What exactlly do you want them to do for him this time? GBS might be the wrong dx for this now it has moved over to the cronic form in my opinion. I am sure the others will agree that have that form (CIDP or Chronic Inflammatory Demyelinating Polyneuropathy). The treatment can be different and steriods can be used where with GBS they are not used in the treatment.
Keep up the advanced efforts!
Hello Everyone!
[QUOTE=concerndaugher]Pittsburgh is where we are trying to convince my mother to go. are you in a re-hab center? which one?
thank you so much
Karen[/QUOTE]
Karen I knew that is where you were considering! Here each rehab place is different like every other place. Thru my insurance I received rehab while I was in ICU I had requested they come in and just move my legs and arms out slightly to keep them moving. I could feel the one leg was getting cramps and I had family straighten out my hands between their hands. They I moved to a unit where everyone was on trache and they provided the next level of rehab getting each little muscle to move. Results and brags come quickly each day when the GBS started to reverse. I was weaned off the trache and I remained there until I could walk 10 steps and moved onto the rehab floor. On the rehab floor I had rehab in the morning and also in the afternoon. There I was made to do Occupational and Physical Therapy both in the morning and afternoon for 90 minutes each time. I was told to sleep between appointments. I ate and would sleep a few hours between. If I did not rest I did not get good results and a few times I thought I was not going to make it thru that secession. But they listened to me and knew to work on other areas and let the legs or back rest. Some days they let the upper body rest and only worked on the core and the lower body! After that I went home after 9 weeks in the hospital and come home to have a visiting nurse for a few weeks and then I had Occupational and Physical Therapy come to the house several times a week. I worked toward being able to leave the house and go to the rehab facility several times a week. Again there I worked on OT and PT and getting better slowly. I spent the Summer outdoors, at the fitness center and now that Winter is here and I am ready for the next level I am back in PT rehab. I am sending you a private message!
Located in the upper right hand corner of your window for this site!
Hello Everyone!
I agree with vmac and everyone. As many members as we have that is how many different stories about their cases there are. Everyone is different! Listen to your body and build up slowly. You should be receiving rehab (both Occupational and Physical) do the routine they are building for you! If you over do it you will know! Listen to your body. You might feel your brain is in high gear and the body is in low….that is common. Just keep making mental notes of where you want to be and set your goals. Slowly your body will heal and you will be there soon! I try not to schedule two Doctor appointments in a day but sometimes it is not possible and I feel it the next day. I just take a day to recover and don’t push it that day…..that is when I do alot of resting…..the nerves heal better when you are horizontal from what I have read here. Some say that you should try and get 10 to 12 hours of sleep a day…..some can get by with a good 8 hours. Just listen to your body….if you over do it beleive me you will know. Next day or later that day you will know! Just like you say you can do 60 steps and the you get tired. You are already listening to your body. Maybe the next walk you do that day will only be 50 steps so you are working and exercising but not doing as much! Just that much of a change can make a big difference.
Hello Everyone!
Hello Everyone!
Hello Everyone!
Teresa Rose I am glad you were able to find us and are able to correspond with us from the hospital! You are doing amazing well and have a long slow recovery ahead of you. I agree at first you can see daily improvements like moving a finger and move your hand. After awhile that will start to improve slower as you will only see improvements weekly and then bi weekly and then monthly. You will also have good days and bad days. Over do it and you will know it by how you feel. Exhaustion is the big part of this we all share. You have to keep that possitive attitude and you have a Son that will keep you going. I am 14 months into this and on the outside for the most part it is hard to tell that I have something wrong but on the inside I am always feeling different things tingling, a zing or a cramp here or there. It keeps life interesting. Listen to your body! I am one of the few here that is not on medication for the pain. I went to rehab for 6 months and then took 6 months off to catch up to things before I moved up to the next level of rehab. I just felt that was what my body needed but I still went to a fitness club to get into the water and not fight gravity in an aqua aerobics class. I try to walk and increase my stamina and breathing. I stretch and work on range of motion consistantly. At first I worked out on the circuit of machines without any weights and slowly increased. Now I am back in rehab working on going to the next level. Still watching to not over do it and trying to increase my total health. Like you I was very active and in good heallth. They think the GBS followed a sinsu infection that was not bad enough for me to go to the Doctors. I was totally paralized and had to learn to move each finger, eat, roll over, sit up, stand and walk. You are doing great in those areas. Just being able to do that much is wonderful. Keep working on this and you will well. You want to work those muscles to keep from getting weaker but you also have to rest to let the nerves heal. That is where time is needed they heal very slowly! That will take years! But as they heal you will see changes in your body a few times a month you will gain your health. It is a very scarey illness and is not very well understood. As you continue to read you will see how each of us are constantly changing and asking questions and then you see start to feel the same things and know you are getting better! Also you will be here to give those that are just finding out they have GBS some Hope! Remembering how bad you were before is part of the healing process that will replace the why me type of depression and frustration we all have gone thru! Chin up and post often!
Anyone have msn instant messenger you can add me to your contact list for live chat by using [email]yourpalkit@hotmail.com[/email] or use that to email me! Also the instant messages from this forum will go directly into my email to tell me I have a message! Make 2007 a possitive, active year!
Hello everyone!
Welcome from me too! I hope you are using happy colors to express yourself! I bet your paintings are beautiful! Would you be interested in donated a painting to my event for GBS? Just kidding but boy it is a thought to get one for the next symposium to show how you can make lemons into lemonade! I have a request! Would you hide a small GBS on one of your paintings for all of us? I guess it would be asking too much to take one outside the ABC Studios in New York City at Time Square that has a big HI KIT on it? OK, it does not hurt to ask! Good luck with your talent!
Hello Everyone!
With the help of the staff it would not be hard to get some sponsorship from corporations to have a t shirt pinted out with the GBSFI logo on the front…the date and the name of the event! On the back you could list all the corporations that contributed. Some would be able to donate things for in a goodie bag for people to use. Rubber twist pads for opening up jars or large grip pens for the handicap fingers! They are always looking for ideas and some already have health items they donate for things like this. I have received many many goodie bags and any thing is appreciated! I have had bottles water companies supply each participant with a bottle of water. Some of the local bagel companies donate treats for all the participants. They all have their favorite way of contributing in some way…..some just like to pay toward the t shirts or some like to pay for the printing. Break it down any way, but it all adds up to success! Hospitals and pharmicutial companies like to get their names out there. Hospital equipment companies! Some have a budget and some are delighted to help out and you don’t have to beg! Even a note pad or calendar with their logo on it gets them advertisement! Just start early so they can figure your event in their budgets! Some need more notice than others! Might be too late for some of them this year but not for next year! Even a small donation can become a door prize! Just make sure you give them credit for their donations! Besure to check with your local laws to make sure you can offer raffles, 50/50 drawings and if you need a permit to use a grove at the local park or if you need to have police for the number of people you expect or need them to close certain roads…some make you have an ambulance for groups or events like this too! Thanks for the reminder that May is the Month!
Hello Everyone!
Hello Liz…..yes same here…..very strange! Golf clubs have not been put away yet and no one has their shovels and salt ready! 61 today…but getting cooler to where they are calling for snow showers or flurries the beginning of the week! My friend in Anchorage has 5 feet of snow on the ground and temps below zero…..like -15 in the next day or two. The snow is up to the bellies of the Moose! When I come home last year in January on the 13th the temp was 74, we had all the windows open and the radio turned up and the sun roof open! I love the four seasons, how about you?
Hello Everyone!
concerndaugher you don’t live that far from me! If you need someone to talk to or want to send me a private message, I would like to help if I can.
You are new to this forum, post have been lost due to glitches. You are not along and your problems are similar to each of ours. It seems like none of us were totally thrilled with our health care….either in a small town or a huge hospital. Doctors do things differently for the most part and it all adds up to the individual person that day! For some reason they choose to do things with me a certain way! I had to follow their lead! I did not have a choice. I started out in one hospital that I was very comfortable in and they did not have the machine for the PlasmaPhresis Exchange….I was then transferred to a bigger hospital that was hard for family members to travel to! They assumed the job of calling me when they knew I would be waiting for my meals to arrive. Others called to say Good Night! Here I am 14 months later and getting better slowly each day! I have good days and bad days. I have learned to listen to my body. Learned to sort out priorities too! Find time to talk to a nurse you see often during your visits. I had a wonderful rare Doctor that called my husband each day at work to talk to him about my progress and what to expect when he visited that night! Also I might add that I seen that Doctor any time of the day….as early as 7 AM and as late as 10:30 PM…..I started to wonder if he ever went home! The team of Doctors that took care of me went thru him and he was quick at getting them messages to come see me for a problem or hear from them if they visited me! I even has messages being passed back and forth between the hospitals from their staff members that had treated me and wanted to check on me! I truely think they all care but some of them don’t show it very well. I was proud of mine that they admitted they did not know everything about GBS and wanted to check with another Doctor from another state before they told me the wrong thing. I admired that! I admired them for getting back to me to answer those questions. I could have called a few of them Jerks but I think they were doing the best they could and could not do something for me that was under the study of another specialist so they did not beat around the bush they told me to check with them and they would check back to me to see what the answer was. Next day they would check back or the nurse would come in to see if that doctor had been in to visit yet she was looking for answers too! They were amazing and worked as a team, careful not to step on either others toes. I could see at times they did not agree with a decision but they let it take its course and then would step in if they felt there was another way to handle it! I learned how to have better communcations with family and friends due to the staff at the hospital. I was actually comforting family and friends! I would give them the night off if I knew someone else was visiting. I was the Princess but I was also in charge! After awhile I was getting better and becomeing demanding! LOL That is when the nurses told me they hoped I would go home soon….my demands were showing them I was ready! DID that make the Doctors release me sooner? Nope I had to do the time! Now my advice is don’t rush to come home it only immediately produces major problems that need taken care of! 24/7 and I don’t always feel like a Princess any more! I am back to being Queen, thus the LADY KIT!
Hello Everyone!
I agree with everyone’s posts each of us had our own battles but the war is all the same….just takes time. The hardest job is for the caregivers putting the pieces together each time they come in. You might not get to talk to a nurse or the doctors each day to find out what is going on! I called each of my accomplishments Brags and here on the form some call them Daily Delights. And that is exactly what they were! I was tickled pink when I could do any new for that day and save it to share with the aids, nurses and doctors, housekeeping, respritory to the poor person that come in three times a day brining me my trays! I usually had 4 or 5 brags a day! Some minor, some major and some just humorous! But I took them all as signs I was getting better! I only lost two days of not knowing where i was and I think that was to relax me and let the respirator work and keep me from fighting things. They did give me Morphine and I was lucky to find out that you can have different responses to that and it gave me night and day terrors! I did ask them to stop giving me that. The problems stopped. I was not in constant pain like many were but I did have over sensitive areas where I did not like to be touched. My eyes were stuck wide open and they looked like they were going to pop out of my head. I can not imagine how it was for those that had them shut. I left the tv on two channels that I knew their schedules and that helped me to tell what time it was during the day and at night. Since in some of the rooms I did not have a window or did not face it where I could see if it was day or night. I could feel the breeze across my legs and feet that would excite the nerves and make them buzzzz. I was very lucky that most of my staff could read my lips around tubes and stuff and that made things easlier. I will warn you about asking too many questions it take alot out of the GBSers to keep answering the same questions! Mine left a tablet there with questions they had asked and my answers for others to read. Someone read a humorous book to me several times a week when she visited and we got thru it chapter by chapter. It happened to be a Christmas Story and it was about the time I was in the hospital and I could picture my neighborhood putting all the candles in the windows…etc.. I liked someone to hold my hand between theres and straighten out my fingers. They got dry and so did my feet….my Son’s job was to put hand cream on my hands and hubby talked to me at the foot of the bed and kept creams on my feet. But to have anyone touch the back of my feet was a tear jerker! Later just to have someone comb my hair was a pleasure and to have it washed was an exciting day! Make me feel great! I was surprised that when I was in ICU they told me they were shampooing my hair and I was delighted….found out they put warm water in one of those caps that are filled with powder and I ended up with cookie dough for hair! I appreciated each and every visit that I had with my Physical and Occupational Therapists….they were very slow in their process, but the results were so quick when I think about it! They worked so hard to get me home! So pay attention to those tiny brags they mean so much to us daily and all add up to a trip to the next level of theopy! Also a good idea was mentioned to print out emails and posts from this site and highlight the good parts…not the ones where we call the doctors jerks…that is just plain wrong of us! It is part of the venting process….the journey is worth the time put in to getting well! Great thread that someone started! Nice to see everyone is coming back more after the busy holidays!
Hello Everyone!
Oh I have thought about making a thread about the funny residuals I have had over the last 14 months. Decided it would fill a book not just a single post! It is scarey not knowing if something is “normal” or not. I pay closer attention to my body more than than ever! I also never really mention all the things I notice and most of the time I already have read some ones post.
I have notice that my scar itches and is not over healing and thick. But I can fill it pull on the outside and it is raised like a bridge across the caved in part behind it….making it stand out more. Also that pulling on the inside does make me cough too and at times it feels like my throat has twisted or colasped….making me panic for a few seconds as I clear my thoat with a cough. Some times it makes me choke and then panic sets in. I have never had what I would call cramping but thinks for the power of suggestion! LOL I am just wondering what the scar looks like on the inside! Hot (well warm) beverages still make it tighten up But it is my badge of honor for putting up with that trache for that many weeks!
Give it time to heal and if after that peroid of time and no results I would ask the Doctor for suggestions. I have several friends that are speech therapists and they talk to me about swallowing and funny feelings too. Some they did not expect me to have with the GBS. Now they have learned something new too!
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Absolutly know how you feel. Women don’t want to stand out in a crowd. That is not a scar it is a Metal of Honor…show it with pride! You have earned it! I had one friend that said “Ahhhh you are wearing a turtle neck sweater to hide your scar!” I quickly added that that was not the reason for being in fashion. I just got my hair cut to make that easier for me and forgot how cold I get when the cold air hits the back of my neck! Besides it is Winter now! Not that anyone can tell that from the weather maps with these mild temps!
Are you going back for just a few hours those first days back or going to try and work the whole 8 hours? I did see a post before the site deleted our posts that someone went back to work and her boss worked with her to let her take breaks when she felt tired? Make sure you pack a healthy lunch and take in two snacks too. One for the morning break and one for the afternoon break. Eat a good breakfast! You can thank yourself later for that when you get home to the kids! Also don’t be afraid to ask them to help out a little more too, so you can spend more time with them in the evenings! *wink*
Have a great day at work! Paydays will be such a reward! Remember to collect those hugs from all the kids when you get home! You will be happy to see them at the end of the day! Be good to yourself and listen to your body!
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Karen, I agree with the others and your Mom is very lucky to have you to ask about this disgusting (not really) situation. It is not pleasant to share personal information for anyone. Remember that the body has been thru alot and to get on a schedule is wise. That might take time and you don’t want her to strain. Let gravity and activity even if it is from sitting in bed and moving around for example stretches and range of motion exercises. Also and I don’t think anyone mentioned this but breathing exercises. Straining can cause the stools to become softer but it is not good for the muscles that are already compromised and weak. They are right about not being able to feel any pressure or urge to go. Remember those muscles have damage to them and are leaking lots of energy and miss guided signals. I had trouble and until I could tell what muscles I was using down in that area I had all kinds of ideas throw at me to help. My Doctor did not like using the enemas. I guess he wanted to let nature take it course and I was eating healthy well balanced meals. After eating a few good meals of solid food I ate something that gave me severe abdominal pains for 24 hours. I asked for one of the most disgusting enemas he had. The first did not work but from then on after a few then my body with the weak muscles could start to move better. Then I ran into problems again and wanted my body to get back to its daily routine. I asked for another enema and that was the last one I needed. Remember the breathing and stretching! If after that she might want to see a specialist. Give her a hug and tell her you told all of us her problem if that does not make her ……oh you get the idea! But laughing is a good abdominal exercise! Strenghtens breathing and lung capicity! Tell her to relax the muscles will get stronger and the nerves will learn to get the signal to the right spot gradually! I am 14 months into this and still listen and pay attention to my body each and every day! Just remind her not to strain. Foods that worked for her before might not help in this situation also.
Sorry to be jumping around I am watching tv and jotting down ideas..and also remembering all the laughs and jokes we made in the hospital about this disgusting matter!
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Hello Annie,
You really need to put your energy into a more positive attitude towards being supportive of your husband. Keep things rolling and try all the avenues that have been suggested. Also I don’t remember seeing any mention to if you have a report from the Doctor or the hospital for yourself? I would make a copy of that and attach it to every letter you send…..also send letters certified mail to show they were received. Next would not hurt to send copies to your State Representive, Senator….local Mayor. Make sure the letters are addressed to the correct partys. Start by stating the case breifly what has taken place and what you need help with from that person. Don’t dwell on the past requests for help. Be professional and give only the facts, watch your spelling and grammar….watch the name calling for example. Tell them your concern and give them the medical names of the problem. Don’t use GBS or other nick names for it. Actually for GBS use Acute Inflammatory Demyelinating Polyneuropathy. Tell them at your concern isthat the majority of patients eventually return to a normal or near normal lifestyle, but many endure a protracted recovery and some remain wheelchair-bound indefinitely without the proper treatments which a Neuroligist would have to be envolved. He also should be receiving rehab to make sure he is progressing and not being over worked or that could bring on another onset or cause more damage. This is a delicate situation where they make sure they are giving plenty of rest for the fatigue and letting the nerves heal, but also doing physical therapy and occupational therapy to start to work with the muscles, tendons and liagaments. Without the proper medications or treatments the demyelination of the nerves will keep progressing and cause damage. IVIG or Plasmaphresis (use the proper medical terms for those treatments) should be used to stop the progression. Also on his dx he might be moving into the CIDP (the cronic form of GBS) catagory too and therefore has to be seen by a Neurologist.
I am not sure if your husband had a spinal tap or not, I don’t remember it being mentioned.
As the caregiver you need to take care of yourself. Get educated and organized. Knowledge is power! You have a couple dozen letters to get out to contacts. Let us know how things are going. Hang in there! As far as seeing a big difference in your husbands condition remember GBS stand for [B]G[/B]etter [B]B[/B]etter [B]S[/B]lowly! Even with treament the healing takes time.
Hello Everyone!
I agree with the others. As your body heals you will experience different feelings and it is easy to blame them on GBS and avoid going to a Doctor. If you are not getting better after giving your body a few days of good rest then make an appointment with your neuro. Take care of yourself! Happy New Year!
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Doby48 Thank you for mentioning this machine on the boards. I went thru lots of rehab in the last year and had all kinds of things done to test strenght. Anything from squeezing their fingers to pushing them away with my arms and pulling them toward me with both legs and arms. They also had these tools that they used to measure my grip in my hands which showed continual strenght in my grip. What it failed to show was sideways movement strenght in all the fingers. Also unless I questioned or complained I did not get work done on any of the tiny muscles in my hand and wrists. Just living daily as I got stronger would show me where I still had weaknesses. For example: When getting change at a drive up window either at the pharmacy, fast food or the banks, I had a hard time turning my left hand over to accept change from someone that was beside me instead of infront of me! I had the typical one strong leg and arm but they are normally on the same side of the body. Mine were on opposite sides which threw the rehab people completely off from their text book workouts. It will be interesting to see what they find from these machines you mentioned and if you agree with them after the results. I am like you I still after all this rehab have trouble with steps. Here at home I have not got the long full flight of steps in the house. Or anywhere outdoors. I have just a few steps 7 or 8 and then a landing where I can rest. I no longer need to rest as much but doing a full flight of steps at someones home kept me from being with family over the holidays. I can not go to the mall and play on their staircase yet. Fear of heights does not help. I am working with the walking in place tape, the step aerobics tape and adding the step master to my routine at the fitness center. Ofcourse, not at once but I am meeting every challenge with courage to make me stronger. Right now I am doing a little bit more to strenghten my back and abs to assist my breathing and stamina…to get this old body back where it was. Able to take the stairs rather than the elevator! to keep eliminating the stores that I have to use the electric shopping carts to assist me while shopping!
Keep up the great work and maybe we should start an exercise board for the new year! I will start working on that. I know we also have a few fitness people that come here too that can offer great ideas!
Hello Everyone!
TRUE
I miss not having our boat and water skiing, but most of all I miss my Winter Sports. Married a man that wants to move to a warmer climate.
The next person could turn their keyboard upside down and find all kind of unidentifiable crumbs, dust and even a few flecks of glitter!
Go ahead and try it even if you don’t reply to this message! LOL 😀
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Judi Z> Thanks! I have always seem to take things lightly and not let them bother me. I have used lemons to make lemonade. I have more patience that a person should have. The whole time I was in ICU and on the other floors at the hospital I used my sense of humor thru my illness the whole time. I have used this forum to learn about my GBS and understand it better. Thru the message boards, I have learned I am not alone. Since the chatroom was nice for live chat when you needed an answer right way and if that did not completely answer your questions you could ask more and get answer right then when you were feeling a certain way or in a certain mood. Understanding this illness can cause SO MUCH stress to the GBSers and also to our care givers! It is nice to be able to communicate with others about something that is so rare! Also nice to immediately put your mind to ease that what you are experiencing is real. How long it takes for the nerves to heal and also to share those delightful little brags. To give hope is a great feeling! To get it is even more precious! I sent you a personal private message.
Jerimy> I do agree about our losses and it is frustrating, but you will find that most of the time I am not disagreeing, I just give those things that irritate me less air time and try to ignore them. That hard part to accept is that different ways you get to the different forums it brings you to different parts of the old posts. Some being in my computers cache file and then some being on the forums and some being under different links to the pages and how you get to them. I am not sure what is not there and is still there because I am seeing some of the posts that you say are missing.
What some forums do is once a day or once a week or once a month or after so many posts is they clear the boards to keep only current posts. But also provide a place for where they store archived boards. Only keeping ones that are important, not the ones that are on the light side and are contests or games. Both methods have disavantages and advantages. I try so to speak, not to cry over spilt milk. Or when I am really frustrated I just think and try to get the big picture. A hundred years from now who will know or who will care! Hang in there and we will start to get new posts to bring those old ones back! We will never forget our GBS friends that are gone, they will always be in our hearts! We will forever be quoting them to help others by passing on the weallth of information we all have shared!
Enjoy your holidays!
Hello Everyone!
Oh that is really sweet! What a great photo. That one could go on the mantle of any home! That is what Christmas is all about, the children, love and being with family and friends. I hope the stress that comes with the holidays does not over shadow everyones memories! With all of us having problems health wise….shift the holidays to what is really important for you and your family!
Looks like you are already doing that in Grand Style! I should go get some old photos of me with Santa and post them. Anyone have some old photos of themselves with Santa? Please share the ones of the children too!
Thanks for sharing that added a smile to my celebration!
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[B]First Merry Christmas and Happy Holidays to everyone![/B]
Don’t Panic and stress yourself out! I found many of our old posts from December by using the “Forum Jump” pull down menu at the bottom of the pages. All was not lost!
I also hear and feel your frustrations over loosing posts. Usually chatrooms and message boards are generated on a different server than the one that carries the main information. If that computer is compromised you can loose that part of the sites you visit. The fact that all our information was not lost kinda makes me think that is the way this information is stored. Maybe on three different systems. But not sure!
Hang in there and build up the site with your best remembered posts and don’t let it stress you out. It happens to all of the good sites! Take a deep breath and remember the important things. We have newbies visiting all the time that need fresh ideas and information, so look at this sweep as cleaning house and bringing the fresh products to the front of the shelf!
2007 is around the corner and now is the time to get rid of stress and anything negative. Hang in there and Happy New Year Everyone!
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Hi Ken! Welcome to our forum.
I think the protocal is to go with the less invasive method first IVIG….once you give the plasmaphresis which is very invasive it wipes out any of the benefits of the IVIG. IVIG and Plasmaphresis do not cure it is only used to stop the process of the body attacking the sheath of the neurves. Steriods should not be used for GBS. Many pain meds don’t work for everyone…..it all is differnet and you have to keep trying what works for you! There are also many tests that you can take to see if the Mylin is damaged or if there is more damage done to the nerve itself too. It is really having the medical world test for GBS quicker. Because it is rare it is not recognized by alot of the doctors and it shares traits of other disease also. So they keep testing and ruling out those diseases before they do the other tests.
It is frustrating! Hang in there and help us keep the word spreading!
Hello Everyone!
Gene I crashed with the GBS and hit bottom. I had to learn to roll over, sit up and stand. Then come the baby steps in the step down unit while the trache helped me to breath and get high enough levels of oxygen into my lungs and blood to feed those muscles. Getting the message to travel was slow….some things took days…..some took weeks and some took months. It has been over a year now. I am still working for more stamina and strenght. Even if I am taking two steps forward and sliding one step back I am still heading in the correct direction.
I can remember going to see the rehab doctor after I got home and I was so devastated that I had one hard fall at home and had had one in the hospital. She reminded me that I had to learn all that stuff over again like a baby. Only thing different was I had done it before and had the memory of what it was like to stand, balance and sit and take a few steps. She reminded me that only falling several times was very good. Look how many times a child falls trying to learn to walk, turn and run! So I guess I did well!
I also did take advantage of exercise in the rehab heated pool. 94 degrees! I had tried later to use the aerobics/lap pool but could not stay in that 84 degrees that long. The HOT TUB at 104 degrees was totally out when you have GBS. I used all kinds of floation devices to float around and I can tell you I battled the tiny waves a few times. My biggest job was not letting the current coming out of the filter take me into other areas and pushes me into people. But just the movement of the water did wonders for my balance and core muscles. Strenght and stamina are coming back slowly!
Keep up the good job of getting better!
Hello Everyone!
False
I have always opened gifts on Christmas morning! Santa has always been very good to me and my family!
Merry Christmas or Happy Holidays to all that come here to be part of our message boards! Happy New Year and may 2007 have much in store for you and your health!
Big ((((((HUG))))))) to our caregivers!!
[COLOR=”Red”][B]Next person is going to travel for Christmas dinner![/B][/COLOR]
Hello Everyone!
It is very sad to loose a family member or friend, but to loose a cyber family member and see such a grand tribute to them on a forum where they were enjoyed and appreciated like Marge has been. I have a heavy heart for all of you and a grin when I remembered reading her post on the cane and the car story! Good bye Marge! This group is going to sadly miss your posts but you will continue to be part of us in our stories!
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Barbara,
Thank you for your time and efforts on these kind of matters. It is bad enough having GBS/CIDP. Having to do with these kind of issues take alot out of a person. Your efforts have taken much of that stress out of our lives and your continued support to tell the medical world about this horrible condition is much appreciated. THANK YOU!
[IMG]http://www.tencards.com/tn/Thank-You-27.jpg[/IMG]
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I am not able to multi-task as much as I used too! Cooking is where I have a hard time. If the preparation and cooking takes too much time I tend to fall asleep while cooking. So I have changed my lifestyle to fix quick meals during the week and when someone is here to watch the clock for me I make our better meals. I have also learned to ask for help during the process and get ones to clean up or get the stuff from the grocery store. That way I can concentrate on my recipes. I think it would be more exhausting to teach someone to make our favorite dishes with my recipes that are in my head.
I have accepted that multi-task is my bodies way of saying slow down and get rest! You don’t listen and I can put you in your room the next few days! My body is my BOSS!
I can not wait for the day that I can watch a whole movie again! I lost count of the number of movies I have started to watch and have not seen the end! Or sometimes I have missed the middle and watched the end. DVDs are great! 🙂
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Hello rusty & welcome,
Try to be patient and calm and your Son will be too. Try to play quiet games or read books that keep him quiet. He will need mental exercise more than physical exercise. Keep his mind busy. Make sure he gets plenty of sleep more than just rest! The skin becomes very tender to touch so think about what you are doing that could cause discomfort. Headaches can also be part of the GBS. Also double vision which can be scarey and frustrating because you can not read or watch tv. I am sure the staff has helped you figure out most of these things already! If the illness has effected swallowing that becomes a problem too when it comes to comfort. Usually they relate food to comfort. What is comes down to is being creative! Exhaustion is a great part of this illness and lasts a very long time after other effects cease!
Happy Holidays….ask family members and neighbors to send cards…that can be a great part of your visits reading cards and talking about those neighbors and family members during the holidays!
PLease keep us posted in his progress….I know it is hard for an adult, but the children and during the holidays has to be very hard for everyone! Remember some decorations in his room where he can see them.
As a caregiver take care of yourself and get plenty of rest too!
Hello everyone!
Hello Everyone!
Hello Everyone!
Since I got older I have been in the habit of getting my eyes examined very regularly. A few months before I come down with GBS my eye doctor found that the entrance to the Optic Nerve had some inflamation. He sent me to my family doctor. After I had the peripheral vision and double vision problem with the onset of the GBS I asked to see a eye specialist. The field of sight was really compromised with the first few tests he did in the hospital. I would wash my face and my eye balls actually hurt when touched. My eyes were swollen and that pressure caused the eyes to buldge and my eye lids would not shut. I could not blink all the muscles were effected. My eyes did not scan together they worked separate from each other like a lizard. I am glad I did not realize how I looked. People would open their eyes very wide when they seen me. I did not make the connection to their reaction till later. I would be looking at something and my vision would go completely dark like smoke was going in front of my eyes. I would wait and it would slowly go away. Later I found that was caused by hemoraging with in the eye.
Now for the good news. A week after I got home the vision started to come into one image. I could watch tv for a longer period of time and also read a magazine article again. The peripheral vision started to get better month by month and also the field of vision. I was able to drive and my vision actually got better as I recovered than it was for years before the onset of GBS. I no longer have floaters and everything is clearer and the colors are vivid again.
I am glad I was told by a nurse to ask to see a Neuro-Ophthalmologist. From the very first visit he assured me that the damage from the GBS would heal and my eyesight would improve slowly. I still am going to him for regular exams and each time he sees steady improvement. I am able to see that for myself too! Last visit he said that I have gained back just about all my field of vision.
It is amazing what this illness had effected in my body. I had never really thought about what all the nerveous system effects.
Hope this helps! Hang in there and ask to see a Neuro-Ophthalmologist just not an Ophthalmologist. I seen mine in the hospital twice before I come home.
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Just something as simple as too much Caffine can cause twitches. I am sure stress has to be a major factor! Take care!
Tonic water is carbonated water flavored with fruit extracts, sugar and quinine. It is also known as Indian Tonic Water or just Tonic.
The flavoring agent quinine is a bitter alkaloid from the bark of the cinchona tree. It is used as the base flavor in most bitters, and is also used in the treatment of malaria.
I have never tasted and liked anything that was good for me like medications. Add it to something to make it go down easier! quinine is used for cramps too!
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Oil City, Pennsylvania Venango County Northwestern Pennsylvania on the Allegheny River.
[IMG]http://www.oilcity.org/DWTemps/template1/images/Our-Image/oc-north-side-air.jpg[/IMG]
After the first oil wells were drilled nearby in the 1850’s, Oil City became the headquarters for the Pennzoil, Quaker State, and Wolf’s Head motor oil companies. Oil City is located at the confluence of the Allegheny River and Oil Creek at 41°25′42″N, 79°42′26″W (41.428280, -79.707327)GR1.
It is beautiful there in the Autumn. Nice place to visit at the foothills of the Appalachian Mountains!
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It has been unreal weather here all this week. Morning cup of tea out on the patio and 60s each morning. I am close to Cheryl so I am just going to put “DITTO” on her message! Our first measurable snowfall this season! What a way to bring in December! Today I am going to go out and work in the yard. Mid 60s today is a nice way to move out of November! Now the count down in December! 😮
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TRUE….my house has been open for over 258 foster dogs and many many foster cats. I also have taken in rabbits, raccoons and birds. Guilty of loving animals! Infact, when I got GBS I had a foster dog here that had to be placed in another rescue home. I felt worse for her than I did for myself.
Next person has visited Sea World and seen Shamu! Scarey about the trainer has was attacked by their killer whale yesterday.
[IMG]http://greatescapetravel.com/album/AS2000/images/raccoons.jpg[/IMG]
Hello Everyone!
What is great about this forum is that you read about how someone is feeling or what they are experiencing at different stages and it took some of the worry out of my recovery for me! Even the tiny feelings they experienced and shared. Like the past three days I have had no tingling in my fingers and toes. The are still some what numb but the needles and pins or tingling is gone. It is nice to have a break from little things like that. It was down to the last two knuckles on my fingers and only envolved my toes. Not having the distraction from something that is not really a pain that would require meds, was such a gift! It gave me some sense of getting better! I have had it happen before for a few days at a time, but each time I enjoy the relief of not having to deal with it. IT GIVES ME HOPE that it will completely go away some day! I am patient and can wait for that time to happen! Some days I can stand there and the the full sink of dishes done. Other times I have to to it in shifts. Causes back pain. I am working hard to strenghten my abs and hips and back to get past that kind of pain. It is getting better slowly. When I can stand there and do a sink full of dishes or get a chore done around the house…..I see it as a GIFT! Each day I get a different little GIFT here and there. Makes me feel like I have accomplished something and that I am getting better! Even at 13 months into this I still pace myself. If I do over do it I am reminded the next few days to go slow I am still healing. As I read from the forum I am about two months behind some of the others on here and what cramp or twitch they are experiencing. When it happens I am thrilled……weird to celebrate over a cramp or electrical like pain in a finger or leg or foot! For those GIFTS I say “Thank you Lord!” May he bless us all in every way! Give us strenght from which we can share and comfort each other!
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Dravosburg, Pennsylvania Allegheny County South of Pittsburgh on the Monongahela River. Populations just over 2,000 people. Weather Forecast: Partly cloudy. Highs in the mid 60s. South winds 5 to 10 mph not bad for the end of November! FRIDAY – Rain with snow likely. Breezy and much cooler with highs in the mid 40s. Temperature falling into the mid 30s in the afternoon. Brrrrrrr
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FALSE! I hate to receive junk mail
Next person has bought someone a gift that they would rather keep for themselves! They have not wrapped it and are still trying to talk themselves into giving it to that person for which it was orginally intended. Now that you are busted you have to give it to that person….it is better to give than receive!
Hello Everyone!
Hello Pat! I think you do have the right to be a Worried Wife. But because GBS also requires not just the physical healing of the mylin of the nerves which takes years to completely heal. It also does create the frustration from being tired. I don’t use that word with my GBS I use exhausted. I am drained. So not being active in the evenings after working full time during the day could be just from the GBS. Depression is also from that same frustration. Mentally you are wanting to contribute to the family but physically you are not able. Slowly ease him back into the family circle and get the children to ask him to join in. I might add that just watching children play or an action movie can be over stimulating and tire a GBS person out. Paying bills or working under stress of any kind during the day will wipe you out.
After only 8 months I think he is doing great! What does his doctors say? As far as the nerveous habits that maybe from the sensations he is getting in his hands and feet. You touch a terry cloth towel to dry off your hands and it feels like steel wool. You might get a wet sensation in your feet if you step on a bare floor. Step on a dime in the rug and it feels like the ceiling is leaking or the dog just peed on the rug. Touching the rim of a smooth cup or glass might give you no sensation. You can see the rim and see it is smooth but you can not feel it. Touch silk or the sheet and you can not feel it in your hand but you can see you are holding it. I am into my 13th month and I still can not feel paper money. I have a hard time counting change. My muscles vibrate as the nerves waste energy miss firing to the point I am not able to feel my cell phone vibrate. Noise can trigger this vibrating also. When you see him doing these behaviors you might just ask. Does it feel funny? I would bet he is still feeling some of these residuals. I put my finger tips up to my lips or up to my nose which might look like I am smelling them. But I am touching them as they tingle it seems to calm them down. The warmth of my breath seems to help also, but not when I put heat of them. I hold my fingers with the other hand. I almost feel like when I put my finger tips to my lip I should be able to feel them tingle. It is annoying to say the least. Some times they don’t tingle they feel like the skin is burning. Some times they itch so bad you want to remove the skin!
See what others say to your message and remember to open up the lines of communication.
Remember we are always here to try and help understand this illness!
Hello Everyone!
Rachael and Mic Our prayers are with you and sorry you had to find this group under such stressful times. I have also read that not only dogs can become infected but bird’s stool contains that bacteria if it has been infected. Keep stress out of their lives and keep things on the lighter side. Stop with the “Can you feel your toes?” questions. They will tell you if there is something that does not feel right!
I got GBS November a year go and I had no illness prior to the onset. Only thing was that with a cronic sinus problem. The doctors figure that I might of had a sinus infection that ran down my immune system. I was not ill enough to contact the doctor and the sinus problem got better without meds. Some here can only guess how they got the right conditions for GBS to settle into their bodies. Remember STRESS is also a thing that can supress the immune system.
Enjoy the holidays and think possitive.
Remember knowledge is power and you have the information that if a problem does arrise you can inform the doctors to read up on GBS and get started with the proper steps for testing for it. Till then just enjoy life!
Hello Everyone!
Hello Everyone!
Hello Everyone
Hello Everyone!
DEB THIS IS GREAT NEWS!
YOU MADE MY DAY AND ARE MY HERO OF THE DAY FOR EVEN TRYING THIS!
Please live out more of your dreams for those of us that are still not as confident to give it a try just YET! My time will come!
What is next? Keep dreaming, everyone! What is your dream?
Hello Everyone!
Hi Nenni!
I was reading about your wife and remembering when GBS hit me. Her case sounds similar to mine. Yes the IVIG treatments are given to stop the progression of GBS. My five daily treatments didn’t work and I was also given plasma exchange for five treatments. One every other day. I was totally paralyzed but and vented. I spent 9 weeks in hospitals. It can get worse before it gets better. I’ll pray for you, the caregiver. The good news is there is hope. I’m not 100% better one year later but I can do many things like drive and grocery shop and work on my family photo album/scrapbook. I just need to rest alot and my hands & feet still tingle all the time. Some days they hurt more than others. I can tell you that if I have a bad day it is usually because I have done too much the day before. The more I rest and actually get some sleep I do feel better. I can also tell you that you don’t get enough rest in the hospital.
Now about you. I am worried about you and all the traveling you are having to do. Is others able to visit your wife also? How about taking a night a week off from going to the hospital for you? You can get bills paid or grocery stop and just take time to catch up on phone calls or getting off your feet. Once she comes home you will have your hands full and need more energy. We can not have one of our caregivers getting ill. You have to pace yourself also! Also by doing this you go back in two days you will see more progress. Just a thought. Don’t be ashamed to ask family and friends for help. I told my husband to take Wednesday nights off and ask my friends to come in that night to visit. I also arranged to have a friend come in twice a week for the afternoon to be with me. She read a book to me, wrote Thank You notes, read my Christmas and Get Well cards. She combed my hair and made sure I got my hair washed and my nails cut and girl things done! It was time I had to look forward to those visitors and also knowing my husband had time to himself also took away some of the stress. Just a thought for one of our caregivers! Take care of yourself! 😀
Hello Everyone!
WOW I was reading your post and saw so much good going on in your life too! New job and going back to work finally in 2 years. I hope to get back to work and be able to brag about that new job.
Two households and finally being able to sell a house in this market. I am seeing nothing but good happening to you finally! Your life is turning around!
Having mixed emotions when changes are taking place is hard, but try to see how much support you have from your circle of friends here. Even having some one that will call you so you don’t worry about your Sister!
I have not chatted with you personally and am still getting to know everyone but I only see possitive things happening to you, just look how blessed you really are.
Deal with the emotions and lean on your friends. Now might be a good time to send your Sister a letter or card that someone can read to her! I remember how it was being in the hospital.
Now with Thanksgiving coming up soon in the USA we have so much to be thankful about. Let someone know! Let the feelings flow! What would all good memories be like if there was not hard times to make them seem so special?
Hang in there you are special. I lost my Dad a few days before Christmas and I know the kind of loss that causes around that time each year! You know if they had to pick a day to die it would not have been around or on Christmas! But it their way of letting us remember the good times and how special we are! A reminder to make some ones Christmas special by making them know you care! Letting them know you remember they are special too!
So dry up those tears and let go of your fears! Let someone know you are there for them and give someone a HUG! I am glad you are part of my extended family! When I am blue I look for a post to the forum from you!
Happy Holidays Everyone! (((((Brandy)))))
🙂
Hello Everyone!
Hermitage, Pennsylvania
Small town South of Lake Erie in Mercer County. Today’s Weather Forecast for November 19, 2006 A chance of rain and snow showers. No snow accumulation. Highs in the upper 30s. Northwest winds 5 to 10 mph. Chance of precipitation 40 percent. Mostly farm country and I don’t have a picture of anything I have done while visiting Hermitage.
Hello Everyone!
Hello Everyone!
True…..Kinda…….this Lady likes Champagne! Sparkling!
tiny bubbles 0o0o0o0O0O0O0O0O0O0O0O0O0O0O0O0O
BUT I like wine too. Now that we have so many winerys around us. I have to taste them all!
Pennsylvania Wines! Cheers!
Next person can name all of Santa’s Reindeer plus the one with the Red Nose!
Hello Everyone!
I was asked several times a day if I had a headache. Their information said that GBS can be accompanied by headaches. I did not get them! I very seldom have had headaches. I just contribute that to the amount of caffine I have daily. But after I fell a month after being home. I did jar my head, shoulders and back. I did not get a headache but I had pain in my shoulder and neck. I tried to let it heal on its own and I had no luck. So I did go to the chiropractor and he would make adjustments over a few days for 4 weeks. I found that the muscles in my neck were weak and would not hold the adjustments. I had been doing exercises to strenghten the neck muscles. I started to concentrate more on that area and had my personal trainer help me safely work that area. After a few more weeks I went back to the chiropractor and those final adjustments did hold. I contributed my pain to fatigue and muscle weakness.
Hello Everyone!
Hello Everyone!
Welcome Nenni! We are all here for you! The IVIG or PP will not cure the GBS but it will stop the process and get the immune system to start to reverse the attack. By the time you are seeing effects the damage is done. And more is still being done that need to stop. It does take a long time for the body to heal the damage. I had the IVIG and my body did not respond so I was transferred to another hospital that could give me the PP treatments. That was over 3 weeks before I started to feel a tiny bit better. This is rare and frustrating how little is known. It is very scarey for the patient and the caregivers. GBS does mean [B]G [/B]etting [B]B [/B]etter [B]S [/B]lowly!
Hello Everyone!
When I first come to this forum I asked about the anxious jittery internal feelings I was feeling but I could not find the right words to call them. I some times feel a quiver like a chill or when you have a fever. But I always check and covering up with a quilt does not stop them. I had seen someone call it vibrating and that is as close to what they feel like. When I have my cell phone on vibrate and I am vibrating I can not feel the phone. The vibrating is very distracting and can be started with noice like the noise of some cars or motor cycles going up the street. I am indoors and get this vibrating. I could hear my kids truck leave the stop sign down the street with his glass packs that were not loud at that point but I could predict when he would come around the corner and up the street. I knew it was him before the dogs went to the door! LOL
I still vibrate when someone touchs me that muscle will just vibrate. Or my back when someone is rubbing it. I used to vibrate when I would walk and move my larger muscles, but that would finally go away. It was so bad that when the vibrations would come up my legs and up my arms and meet somewhere in the middle of my body I would be OVERWHELMED! I would have to stop and just stand there till they stopped.
I also would ask my Husband if he could see them. He would say No, but if he would quickly stop rubbing my back and feel for the vibrations he could feel them.
When they were at their worst the dogs would stay away from me! It was like a dog that can detect a seizure. They would just back off and stare at me till I said something to bring them back! Or I would stop vibrating. Weird huh?
So it has to be something that is with the GBS that I have! Also with the CIDP that others have. Wonder why that Doctor said it was not? Another case of it being rare and very little wrote about it.
Good thread! Take care everyone!
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Brandisue……also just taking a second to see where the Geography Game we play on this forum and also the true or false game….there is a word game and even Nascar forum to keep us busy and chatting, but keeps us thinking too and does not tire you out! You can check it once a day or once a week!
Once he is home you might ask him if there is anything he wants to do or have done for him.
Hello everyone!
Hello Everyone!
Great thread!
I got a lot of help thru my hospital thru a person that organized all my insurance, home visits and things like a walker and cane and bathing aids that I needed. They made all the arrangements for me to get handicapped parking etc. They also gave me some information on other things that might come up. I am interested in this thread too. I wanted to see how I was after a year. It was not called Patient Advocate but it was something that was like that. Each facility has them to help families work out problems. I have also called the hospitals for friends and they gave me the number for these members of their staff. Some are for persons under 50…some are for persons over 65 since each level is different they can assist you to get in touch with the right agency!
If I think of what they are called I will come back and post her title.
:p Blonde moment!
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Hello Everyone!
Hello Everyone!
Brandisue & Dad, welcome to our forum. Lots of people here to give you new ideas you your Dad’s abilities progress. There are pens and pencils available that are as thick as a broom stick now. That might help. Also utencils for in the garden and kitchen and bathroom with larger grips for hands that are trying to heal. Just playing volleyball with a balloon can get those arms and hands moving. Having a one pound free weight might be something that will get him moving. Even a water bottle with a few ounces of water in it until the strenght comes back will help with the boredom too! I was given all kind of grips with rubber bands on them and the thera bands and thera putty to use. It did help me alot. I did not do alot all at once but I did keep things moving many times during the day. I had my upper body to work and the lower body routine too. I worked on the core muscles for strenght in my back and hips. I found that when I found a muscle that was not moving I would work with it and let the nerves tell it what to do. It was a slow process but eventually I have full range of motion and only a few tiny muscles that are just not up to par now. Those sponges and putty will really help get strenght in those fingers to press on that remote too!
Once he gets interested in a routine and different activities then you can keep adding things. Occupational Therapy and Physicial Therapy is a MUST!
He has to make up his mind that he wants to exercise and become active again. Does he have friends that can visit and play chess or checkers or cards? Dominos are coming back with different twists to the games. Get the tiny pieces they are harder to pick up for a challenge!
Give him a bowl of pennies and have him count them and put them into piles of 50 and then you can put them into the paper rolls. A week later bring him another dollars worth to be counted. Reuse the paper rolls!
I still do this one today! Makes my purse lighter and I can feel the tiny muscles that need that kind of movement.
Also put objects in a plastic shoe box or dish pan with a few boxes of rice and let him hunt for the objects. That helps with coordination, senitivity of the finger tips and does a bunch more for the hands. Nuts, bolts, screws, nail, buttons of different sizes, paper clips and a marble or two. Tiny game pieces. Some opf plastic or wood and some metal objects. Tiny springs out of a pen or even a rubber band or barette from a little girl. Dice, tiny pom pom from a craft project or a cotton ball. When I first started this I had to close my eyes and tell the PT person what the object was. Heck I was lucky enough to find any of the objects with my numb fingers. I even cried at first because I thought the rice felt like crushed glass and the elbow macaroni was sharp like metal screws! Imagine that!
There is no substitute for PT or OT but in a pinch you can take away some of the boredom by letting him clean out the junk drawer for you!
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False! I never turn my phone off. I just use the Caller ID to ignore those that should not be calling us on the weekends. Answering machine is never on either. They can call back and take their chances of me not taking a nap or watching a good movie!
The next person has owed an exotic pet!
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Hello Miss Erin and tell Corey we are thinking about him! Good thoughts!
I had the IVIG that first week (5 treatments) I did not have any side effects to them and my body did not respond to them like the Doctors hoped so I received the Plasmaphesis Exchange. No side effects and did respond nicely to those!
By then I had completely crashed and was on life support. My body started to slowly reverse and I continue to get better and better.
I am glad Corey has you there for him! Take care of yourself also!
Hello Everyone!
Hello Everyone!
A few years before I got GBS I got a good deal on a very expensive recliner that has a lift put into it. I bought it and then put it in the livingroom to replace the Archy Bunker chair that my husband used. Eventually with the right blanket and pillow I could not get him out of that chair. I never liked it! While in the hospital in all their fancy beds that adjusted and floated me on air and massaged and gave me different adjustments to create ocean motion. I come home! I sat in the recliner that was electric and it made it very easy for me to lay back because I did not have any strenght in my arms to push a regular recliner back. I only used it when my husband was around incase the electric went out! I did not want to be stuck in that chair for the rest of the day. I was told by rehab to only take it up to the sit position and not to use the stand feature so I would continue to gain my strenght back and I have kept that promise. I have also been able to use the lower couch since my back and legs have got stronger. I will take a nap there but the best rest is in the bedroom in my regular bed. I can use several pillows and I do have a memory foam pillow which I really like. I got the extra deep mattress and/or box springs and that gives the whole bed some height. For a few nights I used my strap to get my feet in when I was tired. After that the height gave me an advantage I could sit on the edge to get dressed. That height also made it easy for me to slip in and out of bed during the night without too much movement. But it was all the grunting if I got turned in the covers and could not get free! I could not win! Now I don’t even want an adjustable bed and I throw the extra pillows over the edge most nights.
Any combinations that gives you the much needed rest is what we all need. Hope you all find a full night of restful, peaceful sleep! Dogs are not allowed in the bed they can lay on the covers and pin me down for the count till someone comes and gets them off. They know I am not capible of getting all of them off the bed! I don’t think any of you share your bed with 3 German Shepherd Dogs. If you do then get the King size! LOL:D
Hello Everyone!
I do remember a post in the last year that hot tubs are a NO NO! How long after you have GBS is a good time to rethink about going back into the hot tub?
I agree it does help with no muscle pain after exercises and it does relax all your muscles. I take a nap just due to the exercise and being relaxed. A short nap and I am up and able to function much better. I get up without any stiffness…..which is a great way to wake up!
Glad this works for your too Pam! I do some kind of water exercises each day and then only do the circuit of machines every other day to let the muscles heal or rest! I am in an extensive exercise program that keeps me moving and building up my stamina slowly. Pain free!
Hello Everyone!
Hello Everyone!
I have small tremors in my hands and they move from finger to finger. Right now they are only in my ring fingers of each hand. I see them when I spread my fingers. I have been doing exercises and I notice when I concentrate on a particular muscle in lets say my thumb because I was getting cramps there. I exercised that area to make it stronger. Once I get that tiny muscle stronger I can say good bye to the tremors. Remember mine are only little wiggles. I do still have that vibrations and when I have something happen and have to ask a sales person a question or people are yelling at each other like after a car accident. I have to get out of there I start to quiver. Noises really set my nerves off too! But that is getting better in the past few months. Kids screaming or yelling and jumping around also set them off. I have not avoided those things but back off a little and sit there trying to get used to them and the problem. Like now I don’t sit in the playground on the bench I sit on the outside of the fence around the playground. Then slowly introduced myself back into the area with good results. Last weekend I went into the pits at the races around all the noise! I did very well and was able to walk to watch the races. We did well we come in 16 out of 42 cars. I was able to move up from the first few rows in the bleachers too! But that is my fear of heights. Still paced myself the whole day in the COLD and took a nap as soon as we got back to the car. I am getting better slowly!
Using the water for resistance in the pool has really given strenght to those muscles in my hips and legs and back and shoulders and arms and especially my hands. I have always forgot to kick when in the water. I float and just tread water with my hands for stability. Since doing those upper body exercises with every tiny muscle I can think of. I am now about to move my arms in a very graceful motion…..the range of motion is coming back in all my joints. Be patient with your body but don’t give up!
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Welcome back to our travelers!
To add my two cents to this. While I was in the hospital they went around giving everyone a flu and pneumonia shots. Since I had pheumonia they said to get one every year starting this Winter. I had to question them before they gave me the shots. They were going to give me both! That is when I started to be fiesty and question every move they made! I wanted control back! They told me I was right not to get those shots so soon and to wait till this year.
I am hand or gun shy and don’t even think I will get them this year. I had never had one before and I am a little younger than a senior citizen. Next year I will again think about my options and think about any shots like tetnus etc.
Liz good point brought back from your travels. I am glad to see it bought out so many opinions! Thanks everyone!
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Hello Everyone!
Next person has their Christmas shopping done. I still did not do any from last year when I was in the Hospital with GBS. So that is a BIG FALSE!
I don’t even have a list started yet. I am still working on Birthdays!
The next person forgot to send a friend a Birthday Card! 😮
Hello Everyone!
Hello everyone!
Hello Everyone!
Oh I like the green one! But I like blue too! How about if we adopt one that is green and blue. Blue for the sky and green for the ground. I would wear either color! Will they be available again or should I check out the gbsfi store first before I ask this question?
Nice job on that green ribbon!
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Hello Everyone!
FALSE! I was driving down in Southern Florida and was South of Miami and my friend had been to the Keys. She was explaining to me how beautiful it was down there. She just happened to mention that the highway was above the water which was on both sides. NO LAND most of the trip. I freaked out and my fear of heights got the best of me! I turned around and headed back to Fort Lauderdale for the rest of the week.
The next person has owned a white car!
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OK IT IS THE WEEKEND! LOL 😉
OK getting brave….going to try this while no one is looking!
[IMG]http://www.hizone.info/data/2003/07/09/images/cat_in_a_bottle.jpg[/IMG]
Now to try out the Edit button…..hey it works too!
Now time to spayed or neuter or adopt! I will take two!
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Liz! What ever you do…..DO NOT fire him! That is what he wants you to do! Tell him you want your Christmas present early! How good is his memory? Maybe by then he will forget you got your present already or out of guilt he will buy you a second present! LOL
OK I went around and filled all the bowls with peanuts in the shell…make sure you throw your shells on the floor so Liz and I can dance! We can make her Brother clean them up after we crush them really good! Pretzels and Dip for everyone. Cheese and Crackers too! Send the bill for all this to my Hubby….he is in the dog house! LOL
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Hello Everyone!
Oh I had to get out of the habit of sleeping like a squirrel too! My Occupational Therapist told me to not let anyone talk me in to having the surgery for Carpel Tunnel right now. Let the body heal and then see how I feel. All the problems I was having have all went away. Just by changing my sleeping habits and positions. I was told to HUG a big pillow to keep my wrists from being curled up tight. Everyone is different and maybe this will help someone relieve some pain in some tiny way! Did my shoulders good too from closing in on my chest during the night and making me feel uncomfortable around where the trache was. By spreading my shoulder back wards during the day also strenghtened those muscle so now I don’t use the pillow much anymore! 😎
Hello Everyone!
I have experimented with some of the pain I am in and found that after I fell off the bathroom scale and JOLTED my whole body. I had places that hurt that never hurt before. I visited the chiropractor to see if he could help and that eased up some of the places. Other places were just too weak, muscle wise to hold his adjustments. I used Yoga, stretches and very basic slow exercise to start to strenghten my muscles. From doing just the basic stuff that I could think of like the stability ball and some of the exercises they had me doing from rehab, I was able to strenghten places to where I again visited the chiropractor. My balance got better thru strenght in my muscles. Even now I can get a pain from a tiny muscle that is not up to par and I work on that isolated muscle to get it going again. The water aeroblics of various kinds have really helped. The water had helped me get some of the weight off joints and get range of motion.
At some point I might find I have hit the limit of what exercise can do for me, so I am printing out all these threads and keeping them on file.
Thanks everyone for your replies to others, you don’t realize how much they have helped me thru an hour or a day or a week. I has all added up to months lf suggestions, opinions and others sharing their time with others that has helped me beat this!
Your attitudes have shone me what I want to become and where I don’t want to end up! Thank you all! Keep up the good work!
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Tom….also try and look at this from another angle. Some foods can make you hybernate or give you a tired feeling. We get energy from food….you might want to take a look at your menu. Even just a variety of different foods will gave you a different perspective on life with your family and watching their experiences of suggesting a meal that is of their choice could be something everyone can join in as a family. I am sure your wife would appreciate suggestions and the kids not only will start to think just about what they would enjoy but how others will enjoy it too. Read books to each other or play games as a family. Have a family night. Have a date night for just you and your wife. Come out with a new attitude and help them understand how you are feeling and listen to them and how they are feeling. I bet they are missing the little things you used to do. Those little things that were a BIG part of who you were. You still have a sense of humor and still can have fun…..maybe not party all night but for a family picnic or a sing along or having you there while they watch a scarey movie! List the good things about your family and make that list your priority for things to address each and every day or once a week or each month. Make sure you have private time with each and everyone of your children. Don’t remove yourself, but do the opposite, put yourself in the center of your family as the Nucleus. Don’t over do it and let them know when you need a rest. Make sure you take time out to do what you like to do. You might want to look for a new hobby that you and one of your children can share together. Think positive and fight this illness…..smile and they will smile back…laugh and they will laugh with you. I don’t think that GBS/CIDP has taken that all away from you? You are needed…..you just don’t realize how much. Don’t be selfish, our job is to educate the ones around us how we feel and ask how they feel?
Also I am not sure if you have had any blood tests that monitor your hormone levels but hormones can play tricks on your mind and body and energy levels also. Just a thought that maybe all this is not all from the GBS/CIDP.
Remember YOU are Worth it!
Hello Everyone!
gene It took me a while to go back thru all the threads but it was titled with Dentist in the title and I have been dealing with the Dentist recently.
I never can remember what antibodic are good for the people with GBS and DIDP either. Maybe we should have a thread for just those kinds of important information.
I consider myself very luck not to be feeling much pain….only the numbness and tingling and once in a while a sore muscle. I am able to take Motrin for that and it works for the sore muscles. Takes the edge off the tingling for a few hours.
Hope everyone is enjoying their Summer! 😎
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Great job on taking time to keep the scores and points straight!
Congratulations to those who do so well with the pics! When we get to the Chase I might get serious and pick other drivers and throw out my pics that are keeping me at the end of the list with my group of loosers! LOL
Kathryn have a safe trip and I look forward to seeing your posts again!
The East Coast is going to miss you! Lucky Southwest is getting a good person to enjoy that warmer weather!
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Has anyone heard any updates? Don’t forget that GBS is so different for everyone that it is hard to guess how much the family and doctors are releasing because of just the lack of knowing how things will turn out. I hope she is making progress in the right direction.
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OK OK I could not find any parking place right up front had to enter thru the rear entrance and they made me do dishes before I could pick up the order for the onion rings and cheeseburger. I get your starved! Takes me forever to do the dishes. I just ain’t what I used to be!
But in rehab they had me playing air hockey so I am really good at that if someone wants to challenge me to a game. I am also very good at the pool table! What kind of games we have here….just those darn video games?
OK Cheeseburgers and Onion Rings up! Free! No charge due to be being slow!
Enjoy! The Bartender will take your orders to wash it down!
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Hello Everyone!
Oh it has been many years since I heard “Mai Tai” Those were one of my favorite drinks! I even forget what was in them but it was GOOD! LOL You have to remember I have about two drinks a year so my memory can go from year to year what I celebrated with the year before! Never forget the name when I hear them. Salt on the rim of a good Margaritta is the best. I have so many bottles of Gin here can anyone tell me some good drinks to make to use them up?
I will leave you guys and girls this time with just a bag of Peanuts and Pretzels. It was a cheap gift but will hit the spot!
Hello Everyone!
Once in a while I feel brave and stumble into a Tavern. I walk up to the bar and make sure everyone there has a good supply of salted peanuts right in front of them. Today I am feeling generous and making sure the Pretzels bowls are full too!
Can I get anyone something else to eat?
I hate to see anyone drink on an empty stomach.
Use that artificial sweetner in your drinks it makes you absorb the drink faster and get that buzz quicker!
Hello Everyone!
This is what I need to keep reading. All the possitive posts and even the ones about the tiniest of brags! What a thrill your progress must give you! I know it only made my attitude a little bit more hopeful and possitive about this illness!
Thanks everyone for sharing. Congratulations ericvance!
WHAT A FEELING! Is the song that I am hearing in my head! I am waiting to get tested to see if my reflexes are back yet. Again from a forum post I am reminded to be patient!
Hello Everyone!
I have GBS and am only 6 months from the onset but I totally agree with Brandy. I am not taking any medications. I have a muscle ache here and there once in a while. But the one thing that I learned is you can not fight the fatigue. I come home and napped all day long and slept all night long. Then I started to feel better and could move around more. I made the mistake of not taking a long nap in the morning and in the afternoon and I suffered severe exhaustion. I found this board and realized I needed those naps and not to feel guilty.
I totally agree with Brandy and had to prove it to myself. I still over do it once in a while but know now to listed to my body and I know the feeling of needing to go sit down or when I need to lay down on the couch or when I need to go to bed.
[I]Quote from Brandy:
“My opinion is that this is a residual of GBS/CIDP. Your nerves are not working properly, and the signal to your muscles doesn’t work very well because of that, so your muscles have to strain to work harder to function. You can become very fatiqued in a short period of time.
Fatique plays a huge role in GBS/CIDP even when you are years down the road from your onset of the illness.”[/I]
Hello Everyone!
Vikki> Congratulations on those first few steps they are the foundation for the next hike around the room. Great brag for the forum! I wish you more success with the additional braces and hope they give you more freedom!
I got so excited when I forgot my cane when I went to leave the house. I did turn around and come back in to retrieve it and carried it to the car…just in case! Last few trips I have just left it in the car ….just in case! If I am going into a resturant or a store where they have shopping carts I don’t take it in with me….feels good to leave an old pal in the car and declare some of my freedom back!
Hello Everyone!
In the first week and first hospital I received 5 IVIG treatments and did not respond….I was then transferred to another hospital were I could receive the plasmaspherisis every other day for 5 treatments….I did respond the way they wanted to that. But like the others I did hit bottom before the GBS started to reverse.
Hello Everyone!
I am not really sure what the case was that my GBS followed. I had my teeth cleaned one month exactly from my hospitalization. My Doctor’s seem to think it was because of a sinus infection that I had but did not go to the doctor for. Being a smoker that probably make any infection hard to detect and being busy around the house I probably was ignoring any visits to the doctor.
Hello Everyone!
The one thing that everyone in the hospital and rehab has told me over and over is to make sure I get my rest daily. I have found that I can get tired from just taking care of myself during the day. I can do nothing and try to catch up on physical strenght and have what I call a very mental exercise day and that will also leave me fatigued. So just not rest and sleep but also make sure you turn off your brain and try not to think of things the same way you did before. What do I have to do today, but change that to what am I able to do today. I found my list is always longer than what I actually can get done each day! I don’t think that we can warn each other to not over do it each day! So important for our bodies to heal.
I agree with Don the muscles just do not come back as fast as we would like them to. I was very strong physically before GBS and now a toddler can do more things than I can do with their strenght. I had told the doctore all my weight loss was my muscles and he told me that they were still there they just had to get their strenght back and that would take time! That Doctor was the same Doctor that you had Don! Emily Thank you for the nice e mail it made my day! I would be interested in hearing more about the person from Somerset that also had GBS..and how they are doing today!
I am amazed at one thing in this whole group….after what we all have been thru…YOUR ATTITUDES are great! Many caring people live here!
Hello Everyone!
Hi Don and Emily and Brandy and Jerimy. I was treated in the same hospital and was told of someone that had GBS a few months before me. I am glad to hear from you Don and set you an email with my phone number if you want to call. I am South of Pittsburgh in Bethel Park. I have met several people that live in my community that had GBS in the last decade…each case was different and so was the effects they were left with. Emily you can call me also. Will be interesting to see if you have the same doctors that I had. Your nurses remember you! I am still waiting to hear from someone else from Pittsburgh that can answer questions too! Jerimy nice to hear you are from the “burgh” small world! Keep In Touch!
Hello Everyone!
Hello Everyone
Hi!
Thanks to Brandy for letting me know about what has happened to our wonderful forums. I can’t begin to list the many ways the forum and the wonderful members helped me when I needed it most.
For those of you who don’t know me. I am Brooke (known as Brookie to others). I live in Australia and I had CIDP for over 10 years. Late in 2004 my Neurologist felt that I had gone into remission. So far all has been great.
I stopped IVIg infusions last August and I’ve just reduced my Azathioprine to one tablet. I have had no signs what-so-ever of weakness etc.
For me this is a miracle as I was in really bad shape numerous of times and my diagnosis took AGES. So for anyone out there who is thinking that things may never get any better I’m an example that it can happen.
I’m not on the computer and internet much anymore. I used to live on it because of the fantastic friendships and support I needed at the time was available here. Now I find that I’m too busy to be on the net often.
I’m now volunteering at a hospital in the city of Ballarat. I’m doing ward support which involves doing anything for the patients that they may want. This is mainly things that the nursing staff are too busy to do. Other times patients just want to chat. Due to my experiences I think I am perfect for the job. :p
Ok I’ve bored you all enough. Best wishes to everyone and I’ll try to drop in as often as I can.
Love & Hugs,
Brooke
Hello Everyone!
What a great surprize to find this forum up and running! I had just found this forum when it went offline. Glad that someone has done alot of work to get it up and running! CONGRATULATIONS and WELCOME BACK! To those that come here looking for information on Guillain Barre Syndrome and some of the other things we have covered but have lost. I hope that our members start some good informative threads to guide and encourage others that have just found us to come back often! I am looking forward to adding when I can and reading all the great posts that also contain the things that I just can not put into words. Just coming back after my onset of GBS in November 2005 I need this kind of support, information and a place where I can come to ask questions that have been on my mind.
KIT
Pennsylvania, USA
GBS onset 11/05