hello everyone

Anonymous
February 12, 2011 at 3:47 am

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!

Anonymous
October 3, 2010 at 11:59 pm

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!

Anonymous
July 28, 2010 at 1:30 pm

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!

Anonymous
July 28, 2010 at 6:28 am

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!

Anonymous
June 8, 2010 at 10:01 am

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!

Anonymous
June 8, 2010 at 9:48 am

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!

Anonymous
April 14, 2010 at 11:17 am

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!

Anonymous
March 29, 2010 at 1:42 pm

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!

Anonymous
March 27, 2010 at 2:37 am

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!

Anonymous
March 18, 2010 at 2:41 am

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!

Anonymous
February 21, 2010 at 10:12 pm

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!

Anonymous
February 21, 2010 at 4:33 pm

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!

Anonymous
January 28, 2010 at 12:28 pm

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!

Anonymous
January 27, 2010 at 10:04 pm

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!

Anonymous
January 27, 2010 at 8:30 am

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!

Anonymous
January 26, 2010 at 9:57 pm

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!

Anonymous
December 27, 2009 at 8:52 pm

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!

Anonymous
October 2, 2009 at 8:10 am

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! 😮

Hello Everyone!

Anonymous
September 25, 2009 at 7:51 pm

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!

Anonymous
September 24, 2009 at 11:36 pm

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!

Anonymous
September 4, 2009 at 8:57 am

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!

Anonymous
August 9, 2009 at 6:19 pm

I just stopped in to get out of this heat! Just wanted to make sure that there was snacks on the bar and in the pantry to keep you folks going! Take care and stay safe in this heat! CHEERS!

Hello Everyone!

Anonymous
July 28, 2009 at 12:04 pm

Sorry, I have not been here for a very long time! Liz congrats on the sale and getting things finalized. That will removed some stress! To go with your drinks I am leaving snacks on the bar and the buffet is open! Help yourself!

Hello Everyone!

Anonymous
May 28, 2009 at 10:30 am

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)))) 🙂

Hello Everyone!

Anonymous
April 24, 2009 at 10:37 am

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!

Anonymous
April 24, 2009 at 8:41 am

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!

Hello Everyone!

Anonymous
April 22, 2009 at 10:23 pm

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!

Hello Everyone!

Anonymous
April 21, 2009 at 9:54 am

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!

Hello Everyone!

Anonymous
April 21, 2009 at 9:36 am

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! 🙂

Hello Everyone!

Anonymous
March 31, 2009 at 9:53 am

Interesting thread that I will keep watching! Thanks guys!

Hello Everyone!

Anonymous
March 30, 2009 at 10:00 pm

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!

Hello Everyone!

Anonymous
March 29, 2009 at 10:16 am

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!

Hello Everyone!

Anonymous
March 23, 2009 at 11:16 am

WOW here is proof that it can be done if you use your brain and work for what you want. I know it has not been easy but you did a great job of proving it can be done! Wow and you did it in style! GO GIRL! We are all so proud of you!

Hello Everyone!

Anonymous
March 23, 2009 at 10:59 am

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!

Hello Everyone!

Anonymous
February 19, 2009 at 8:51 pm

Speedy healthy recovery Julie! I am glad you listened to your Mom and got these spots checked out! LOL Moms just do those things it is programed into them. Just look how many grey hairs you have given her already! 😮

Hello Everyone!

Anonymous
February 14, 2009 at 12:10 pm

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!!

Hello Everyone!

Anonymous
February 14, 2009 at 12:03 pm

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!

Hello Everyone!

Anonymous
February 10, 2009 at 10:42 am

I like today because it is going to be near 60 and I dislike today because it is raining. So I can not enjoy the warm day! Hope the rain takes some of the salt off the car because it is not going to be done by me!

Hello Everyone!

Anonymous
February 9, 2009 at 2:19 pm

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.

Hello Everyone!

Anonymous
February 2, 2009 at 4:03 pm

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!

Hello Everyone!

Anonymous
February 2, 2009 at 3:49 pm

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!

Hello Everyone!

Anonymous
February 2, 2009 at 2:30 pm

[COLOR=”SeaGreen”][B]NEVER SHOOT THE MESSENGER![/B][/COLOR]

:p

Hello Everyone!

Anonymous
February 2, 2009 at 12:25 pm

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!

Hello Everyone!

Anonymous
January 29, 2009 at 9:41 pm

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.

Hello Everyone!

Anonymous
January 24, 2009 at 2:46 am

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!

Hello Everyone!

Anonymous
January 4, 2009 at 8:37 am

Julie Thank you for the list. It can be a struggle but is well worth the extra effort! (((hugs)))

Hello Everyone!

Anonymous
January 4, 2009 at 8:34 am

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!

Hello Everyone!

Anonymous
January 1, 2009 at 5:46 pm

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?

Hello Everyone!

Anonymous
December 31, 2008 at 9:00 pm

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!

Hello Everyone!

Anonymous
December 31, 2008 at 8:53 pm

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!

Hello Everyone!

Anonymous
December 31, 2008 at 7:46 pm

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!

Hello Everyone!

Anonymous
December 31, 2008 at 7:41 pm

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!!!

Hello Everyone!

Anonymous
December 27, 2008 at 8:40 pm

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!

Hello Everyone!

Anonymous
December 27, 2008 at 8:32 pm

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! 😀

Hello Everyone!

Anonymous
December 24, 2008 at 9:43 pm

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)))))))))) 😀

Hello Everyone!

Anonymous
December 17, 2008 at 10:40 pm

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!

Hello Everyone!

Anonymous
December 16, 2008 at 8:38 am

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!

Hello Everyone!

Anonymous
December 16, 2008 at 8:30 am

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!!

Hello Everyone!

Anonymous
November 12, 2008 at 10:04 pm

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.

Hello Everyone!

Anonymous
November 11, 2008 at 9:35 pm

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.

Hello Everyone!

Anonymous
November 11, 2008 at 9:21 pm

Welcome home! Stacey and Tim what was their suggestions about the flu shots and other vacinations?

Hello Everyone!

Anonymous
November 11, 2008 at 9:08 pm

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.

Hello Everyone!

Anonymous
November 11, 2008 at 8:58 pm

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!

Hello Everyone!

Anonymous
November 10, 2008 at 8:15 am

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

Hello Everyone!

Anonymous
November 9, 2008 at 12:00 pm

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!

Hello Everyone!

Anonymous
November 7, 2008 at 8:30 am

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! 😀

Hello Everyone!

Anonymous
November 5, 2008 at 10:24 am

Remember your cameras!! 😀

Have a safe trip! 🙂

Enjoy yourself! 😮

Don’t over do it! 🙁

Hello Everyone!

Anonymous
November 5, 2008 at 10:14 am

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.

Hello Everyone!

Anonymous
October 31, 2008 at 9:05 am

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!

Hello Everyone!

Anonymous
October 31, 2008 at 8:47 am

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!

Hello Everyone!

Anonymous
October 28, 2008 at 10:28 pm

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.

Hello Everyone!

Anonymous
October 28, 2008 at 5:45 am

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!

Hello Everyone!

Anonymous
October 28, 2008 at 5:23 am

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?

Hello Everyone!

Anonymous
October 27, 2008 at 7:24 am

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!

Hello Everyone!

Anonymous
October 27, 2008 at 5:01 am

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!

Hello Everyone!

Anonymous
October 26, 2008 at 9:09 pm

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!

Hello Everyone!

Anonymous
October 26, 2008 at 8:57 pm

R —- Rostraver, Westmoreland County, Pennsylvania

Hello Everyone!

Anonymous
October 26, 2008 at 8:53 pm

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

Hello Everyone!

Anonymous
October 22, 2008 at 7:38 pm

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!

Hello Everyone!

Anonymous
October 22, 2008 at 6:48 pm

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! 😎

Hello Everyone!

Anonymous
October 21, 2008 at 1:41 pm

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]

Hello Everyone!

Anonymous
October 21, 2008 at 12:16 pm

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 😀

Hello Everyone!

Anonymous
October 16, 2008 at 5:45 pm

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?

Hello Everyone!

Anonymous
October 15, 2008 at 9:32 am

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! 🙂

Hello Everyone!

Anonymous
October 14, 2008 at 9:56 pm

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! 😮

Hello Everyone!

Anonymous
October 13, 2008 at 9:37 pm

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! 😮

Hello Everyone!

Anonymous
October 12, 2008 at 10:57 am

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! 🙂

Hello Everyone!

Anonymous
October 12, 2008 at 10:46 am

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!

Hello Everyone!

Anonymous
October 11, 2008 at 7:28 pm

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.

Hello Everyone!

Anonymous
October 11, 2008 at 7:01 pm

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!

[IMG]http://i441.photobucket.com/albums/qq139/LadyKITUSA/SeetheUSA2_1.jpg[/IMG]

[IMG]http://i441.photobucket.com/albums/qq139/LadyKITUSA/SeetheUSA_1.jpg[/IMG]

Hello Everyone!

Anonymous
October 10, 2008 at 4:15 pm

Yes I am back! I needed a laugh! Linda you might not be perfect but you are PURRRRRFECT! There is a big difference and I would rather be like you!

OK Norb, calm down I am not going to post a photo this time! LOL

Hello Everyone!

Anonymous
October 10, 2008 at 10:05 am

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!

Anonymous
October 10, 2008 at 8:13 am

😎 Pittsburgh, Allegheny County, Pennsylvania, USA 😎
[COLOR=”Yellow”]GO[/COLOR] [B]STEELERS![/B]
[COLOR=”yellow”]GO[/COLOR] [B]PENGUINS![/B]
[COLOR=”yellow”]GO[/COLOR] [B]PIRATES![/B]
[COLOR=”yellow”]GO [/COLOR][COLOR=”blue”][B]PITT PANTHERS[/B][B]![/B][/COLOR]

Hello Everyone!

Anonymous
October 10, 2008 at 7:48 am

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!

Anonymous
October 9, 2008 at 9:19 pm

Thanks Norb I will try another web site for a homepage or try your second tutorial. Angelfire was never that great and then Lycos took it over and locked me out of two other of my websites and I went back and build a new one. Silly me!

Hello Everyone!

Anonymous
October 9, 2008 at 2:06 pm

NORB! HELP!! Can you see the images or did Angelfire block it? I am just seeing their logo!

Hello Everyone!

Anonymous
October 8, 2008 at 10:11 pm

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!

Anonymous
October 8, 2008 at 9:55 pm

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! 😎

Hello Everyone!

Anonymous
October 8, 2008 at 2:54 pm

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!

Anonymous
October 8, 2008 at 5:18 am

OK guess Angelfire does not let us link to them or was it because of the size of the photo? HELP!! I see that the other link did not work either. Mine was a url to my website. I see the other one was a like to a photo that was on their computer? HELP! LOL:eek:

Hello Everyone!

Anonymous
October 7, 2008 at 9:04 pm

Norb, Thank you so much for the excellent tutorial. Just trying to see if I have learned enough to do this.

[IMG]http://kitsscrapbook.angelfire.com/DSC00131.JPG[/IMG]

This fat little guy was found in my herb garden. I hope he has become a beautiful butterfly by now. 😀

Hello Everyone!

Anonymous
October 7, 2008 at 6:39 am

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!

Hello Everyone!

Anonymous
October 7, 2008 at 6:02 am

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! 😮

Hello Everyone!

Anonymous
September 19, 2008 at 10:30 pm

[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.

Hello Everyone!

Anonymous
September 19, 2008 at 10:00 am

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!

Anonymous
September 18, 2008 at 8:52 am

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!

Anonymous
September 11, 2008 at 1:28 pm

Jamie what wonderful news. Time to celebrate and enjoy your family! You have so much to look forward to….even the snow this year will be exciting to you and your new arrival. Take care….and good luck with all the tests. Be well my friend!

Hello Everyone!

Anonymous
September 11, 2008 at 1:24 pm

Liz Congratulations on the move and getting back on the computer. I am happy about you finding a new type of freedom with the set of wheels! Take care!

Hello Everyone!

Anonymous
September 9, 2008 at 10:23 am

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.

Hello Everyone!

Anonymous
August 28, 2008 at 1:03 pm

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!

Hello Everyone!

Anonymous
August 28, 2008 at 12:33 pm

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.

Hello Everyone

Anonymous
August 25, 2008 at 11:02 am

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.

Hello Everyone!

Anonymous
August 24, 2008 at 9:40 pm

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!

Hello Everyone!

Anonymous
August 21, 2008 at 9:28 am

[B]YEAH LINDA![/B] Your smart to celebrate on the message boards and not get out there is party and wear yourself out. I know exactly how it feels to actually get up in the morning and feel like you got a good nights rest Congratulations!

Hello Everyone!

Anonymous
August 21, 2008 at 9:22 am

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.

Hello Everyone!

Anonymous
August 18, 2008 at 12:47 pm

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!

Hello Everyone!

Anonymous
August 17, 2008 at 1:02 pm

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!

Hello Everyone!

Anonymous
August 10, 2008 at 10:04 pm

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!

Hello Everyone!

Anonymous
August 10, 2008 at 9:45 pm

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!

Anonymous
August 4, 2008 at 9:34 pm

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!

Hello Everyone!

Anonymous
August 4, 2008 at 5:53 pm

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!

Anonymous
August 4, 2008 at 9:35 am

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!

Hello Everyone!

Anonymous
August 4, 2008 at 9:27 am

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!

Hello Everyone!

Anonymous
August 4, 2008 at 7:06 am

Oh LIZ that is such a possitive, up beat, post! I am so happy for you and hope that you continue to enjoy your life in the Sunshine State! All this new found freedom is wonderful. Take care and please post more often!

Hello Everyone!

Anonymous
August 4, 2008 at 7:00 am

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!

Hello Everyone!

Anonymous
August 4, 2008 at 6:28 am

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!

Hello Everyone!

Anonymous
August 3, 2008 at 9:53 am

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!

Hello Everyone!

Anonymous
August 3, 2008 at 9:17 am

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!

Hello Everyone!

Anonymous
August 3, 2008 at 8:34 am

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!

Hello Everyone!

Anonymous
July 30, 2008 at 10:47 pm

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?

Hello Everyone!

Anonymous
July 28, 2008 at 9:12 pm

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.

Hello Everyone!

Anonymous
July 28, 2008 at 9:20 am

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! 😎

Hello Everyone!

Anonymous
July 27, 2008 at 11:20 pm

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!

Hello Everyone!

Anonymous
July 26, 2008 at 10:06 am

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!

Hello Everyone!

Anonymous
July 26, 2008 at 9:47 am

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. 😮

Hello Everyone!

Anonymous
July 25, 2008 at 2:41 pm

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]

Hello Everyone!

Anonymous
July 23, 2008 at 8:13 pm

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.

Hello Everyone!

Anonymous
June 10, 2008 at 8:07 pm

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!

Hello Everyone!

Anonymous
June 8, 2008 at 3:06 pm

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.

Hello Everyone!

Anonymous
June 8, 2008 at 2:43 pm

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.

Hello Everyone!

Anonymous
June 8, 2008 at 2:26 pm

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! 🙁

Hello Everyone!

Anonymous
June 6, 2008 at 1:28 pm

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

Hello Everyone!

Anonymous
June 3, 2008 at 8:41 am

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!

Hello Everyone!

Anonymous
June 3, 2008 at 8:19 am

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!

Hello Everyone!

Anonymous
May 27, 2008 at 11:08 pm

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!

Hello Everyone!

Anonymous
May 27, 2008 at 10:52 pm

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!

Hello Everyone!

Anonymous
May 10, 2008 at 10:25 pm

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!

Hello Everyone!

Anonymous
April 19, 2008 at 10:00 am

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!

Hello Everyone!

Anonymous
April 19, 2008 at 9:45 am

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!

Hello Everyone!

Anonymous
April 19, 2008 at 9:30 am

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.. 🙂

Hello Everyone!

Anonymous
April 16, 2008 at 10:26 pm

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!

Hello Everyone!

Anonymous
April 16, 2008 at 10:12 pm

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.

Hello Everyone!

Anonymous
April 10, 2008 at 4:53 pm

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!

Hello Everyone!

Anonymous
April 2, 2008 at 9:50 pm

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!

Hello Everyone!

Anonymous
April 1, 2008 at 12:41 pm

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!

Hello Everyone!

Anonymous
April 1, 2008 at 11:48 am

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.

Hello Everyone!

Anonymous
April 1, 2008 at 9:34 am

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!

Hello Everyone!

Anonymous
March 28, 2008 at 4:05 pm

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.

Hello Everyone!

Anonymous
March 26, 2008 at 11:22 pm

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.

Hello Everyone!

Anonymous
February 18, 2008 at 11:25 pm

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!

Hello Everyone!

Anonymous
February 16, 2008 at 4:18 pm

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.

Hello Everyone!

Anonymous
February 16, 2008 at 4:12 pm

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.

Hello Everyone!

Anonymous
February 16, 2008 at 3:58 pm

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! 🙂

Hello Everyone!

Anonymous
February 15, 2008 at 10:52 pm

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!

Hello Everyone!

Anonymous
February 11, 2008 at 11:48 pm

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.

Hello Everyone!

Anonymous
February 11, 2008 at 11:34 pm

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!

Hello Everyone!

Anonymous
February 11, 2008 at 11:26 pm

I am O+ I will watch this thread and see what friends of mine that have GBS and other auto immune illness have. Interesting! I don’t think I have ever asked them what blood type they have!

Hello Everyone!

Anonymous
February 10, 2008 at 5:02 pm

Nice story to keep in my folder to let teens that get GBS read. It is these sucess stories that give those hope that are just in the first scarey stages of GBS. Let us know how he does during his Football Season. Thank you for sharing with us!

Hello Everyone!

Anonymous
February 10, 2008 at 4:56 pm

[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. 😮

Hello Everyone!

Anonymous
February 10, 2008 at 4:47 pm

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!

Hello Everyone!

Anonymous
February 9, 2008 at 4:50 pm

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!

Hello Everyone!

Anonymous
February 9, 2008 at 4:33 pm

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!

Hello Everyone!

Anonymous
February 8, 2008 at 10:08 pm

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!

Hello Everyone!

Anonymous
February 8, 2008 at 9:46 pm

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! 😮

Hello Everyone!

Anonymous
February 8, 2008 at 9:35 pm

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!

Hello Everyone!

Anonymous
February 8, 2008 at 9:14 pm

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!

Hello Everyone!

Anonymous
February 8, 2008 at 8:43 pm

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!

Hello Everyone!

Anonymous
February 5, 2008 at 10:29 pm

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.

Hello Everyone!

Anonymous
February 5, 2008 at 10:13 pm

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!

Hello Everyone!

Anonymous
February 5, 2008 at 9:56 pm

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.

Hello Everyone!

Anonymous
February 5, 2008 at 9:50 pm

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.

Hello Everyone!

Anonymous
February 5, 2008 at 9:30 pm

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!

Anonymous
January 29, 2008 at 2:20 pm

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!

Hello Everyone!

Anonymous
January 29, 2008 at 1:35 pm

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.

Hello Everyone!

Anonymous
January 27, 2008 at 9:57 pm

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!

Anonymous
January 27, 2008 at 9:52 pm

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!

Hello Everyone!

Anonymous
January 26, 2008 at 5:16 pm

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.

Hello Everyone!

Anonymous
January 25, 2008 at 8:05 pm

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!

Anonymous
January 24, 2008 at 10:01 pm

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!

Anonymous
January 23, 2008 at 10:23 pm

TNP watches a lot of College Basketball?

FALSE! I am not even sure if all the Colleges around here even have Basketball teams!

The next person (TNP) will shovel snow today!

Hello Everyone!

Anonymous
January 23, 2008 at 8:31 pm

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.

Hello Everyone!

Anonymous
January 23, 2008 at 8:18 pm

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!

Hello Everyone!

Anonymous
January 22, 2008 at 11:13 pm

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.

Hello Everyone!

Anonymous
January 21, 2008 at 4:39 pm

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!

Hello Everyone!

Anonymous
January 21, 2008 at 4:13 pm

Liz, what a great job of bringing Spring into my life today! With this cold temps I know most of us are looking toward a quick Spring. Thank you!

Hello Everyone!

Anonymous
January 20, 2008 at 11:17 pm

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!

Hello Everyone!

Anonymous
January 19, 2008 at 8:38 pm

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.

Hello Everyone!

Anonymous
January 18, 2008 at 12:15 am

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!

Hello Everyone!

Anonymous
January 17, 2008 at 11:53 pm

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!

Anonymous
January 17, 2008 at 12:07 am

Sherry isn’t it nice to know there is another softy in this group of animal lovers on this forum!

Hello Everyone!

Anonymous
January 16, 2008 at 11:58 pm

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!

Hello Everyone!

Anonymous
January 16, 2008 at 11:24 pm

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!

Hello Everyone!

Anonymous
January 15, 2008 at 10:38 pm

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.

Hello Everyone!

Anonymous
January 15, 2008 at 9:50 am

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!

Anonymous
January 14, 2008 at 10:36 pm

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!

Anonymous
January 13, 2008 at 10:23 pm

Another birthday! Happy Birthday Jessica Louise ! I will just make a cake with your name on it and will eat a piece of it in your honor. Maybe I should make cup cakes!

Hello Everyone!

Anonymous
January 13, 2008 at 10:21 pm

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! 😉

Hello Everyone!

Anonymous
January 13, 2008 at 9:12 pm

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.

Hello Everyone!

Anonymous
January 12, 2008 at 6:23 pm

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!

Hello Everyone!

Anonymous
January 11, 2008 at 9:23 am

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] 😮

Hello Everyone!

Anonymous
January 9, 2008 at 11:20 pm

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.

Hello Everyone!

Anonymous
January 6, 2008 at 11:38 pm

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!

Anonymous
January 6, 2008 at 10:54 pm

Great photos! The one with the dog is my favorite but the one with the ducks a contest winner! Great job!

Hello Everyone!

Anonymous
January 5, 2008 at 8:56 pm

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!

Hello Everyone!

Anonymous
January 4, 2008 at 11:05 pm

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!

Hello Everyone!

Anonymous
January 3, 2008 at 11:16 pm

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!

Anonymous
January 2, 2008 at 11:42 pm

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.

Hello Everyone!

Anonymous
January 2, 2008 at 12:59 pm

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!

Hello Everyone!

Anonymous
December 30, 2007 at 5:24 pm

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.

Hello Everyone!

Anonymous
December 27, 2007 at 10:46 am

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!

Anonymous
December 20, 2007 at 10:24 pm

Hello and Welcome Tiffanie! Fatigue is one of the residuals that everyone of us has in common. REST REST REST. Listen to your body! Don’t over do it and get plenty of REST! It does get better slowly!

Hello Everyone!

Anonymous
December 20, 2007 at 10:19 pm

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.

Hello Everyone!

Anonymous
December 17, 2007 at 8:19 pm

[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?

Hello Everyone!

Anonymous
December 16, 2007 at 10:04 pm

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!

Hello Everyone!

Anonymous
December 16, 2007 at 12:44 pm

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!

Hello Everyone!

Anonymous
December 16, 2007 at 12:55 am

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.

Hello Everyone!

Anonymous
December 15, 2007 at 3:24 pm

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!

Hello Everyone!

Anonymous
December 13, 2007 at 10:12 am

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!

Hello Everyone!

Anonymous
December 13, 2007 at 10:07 am

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!

Hello Everyone!

Anonymous
December 12, 2007 at 11:29 pm

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!

Hello Everyone!

Anonymous
December 12, 2007 at 11:14 pm

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.

Hello Everyone!

Anonymous
December 12, 2007 at 11:02 pm

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!

Hello Everyone!

Anonymous
December 8, 2007 at 10:26 am

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!

Anonymous
December 8, 2007 at 5:19 am

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.

Hello Everyone!

Anonymous
December 6, 2007 at 9:48 pm

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!

Hello Everyone!

Anonymous
December 6, 2007 at 12:37 pm

I heard from a friend in Canada that seen this news on the TV up there and she also said that the world is praying for your city. Many circles of friends and family have been disrupted from this event. We all have heavy hearts from hearing about this event!

Hello Everyone!

Anonymous
December 5, 2007 at 9:56 pm

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!

Hello Everyone!

Anonymous
December 5, 2007 at 9:35 pm

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!

Anonymous
December 3, 2007 at 11:13 pm

I agree with Tonya. I had many of the symptoms that your Dad has had and doctoring for them still. Hang in there and keep looking for the possitive steps he is making each day!

Hello Everyone!

Anonymous
December 3, 2007 at 11:06 pm

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.

Hello Everyone!

Anonymous
December 3, 2007 at 5:30 pm

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!

Hello Everyone!

Anonymous
December 3, 2007 at 4:17 pm

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!

Hello Everyone!

Anonymous
December 3, 2007 at 12:25 pm

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.

Hello Everyone!

Anonymous
December 2, 2007 at 7:41 pm

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!

Hello Everyone!

Anonymous
December 2, 2007 at 7:34 pm

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!

Anonymous
December 1, 2007 at 2:28 pm

It Is Wonderful To Get Good News. I Am Very Happy For Your Family That You Are Together And Are Seeing Improvements. Thank You For Keeping Us Posted!

Hello Everyone!

Anonymous
November 30, 2007 at 10:52 pm

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!

Hello Everyone!

Anonymous
November 30, 2007 at 10:45 pm

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!

Hello Everyone!

Anonymous
November 29, 2007 at 9:23 pm

[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.

Hello Everyone!

Anonymous
November 29, 2007 at 12:04 pm

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!

Anonymous
November 29, 2007 at 11:48 am

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!

Anonymous
November 29, 2007 at 11:35 am

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!

Anonymous
November 29, 2007 at 11:19 am

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!

Hello Everyone!

Anonymous
November 29, 2007 at 11:16 am

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!

Hello Everyone!

Anonymous
November 29, 2007 at 10:23 am

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

Hello Everyone!

Anonymous
November 27, 2007 at 11:16 am

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.

Hello Everyone!

Anonymous
November 27, 2007 at 10:51 am

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?

Hello Everyone!

Anonymous
November 25, 2007 at 1:18 pm

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!

Hello Everyone!

Anonymous
November 25, 2007 at 1:15 pm

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!

Hello Everyone!

Anonymous
November 23, 2007 at 8:21 pm

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!

Hello Everyone!

Anonymous
November 21, 2007 at 10:54 pm

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!

Hello Everyone!

Anonymous
November 21, 2007 at 4:35 pm

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!

Hello Everyone!

Anonymous
November 21, 2007 at 4:21 pm

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.

Hello Everyone!

Anonymous
November 21, 2007 at 4:12 pm

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.

Hello Everyone!

Anonymous
November 19, 2007 at 11:57 pm

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?

Hello Everyone!

Anonymous
November 19, 2007 at 11:41 pm

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!

Hello Everyone!

Anonymous
November 19, 2007 at 2:30 pm

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!

Hello Everyone!

Anonymous
November 19, 2007 at 2:05 pm

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.

Hello Everyone!

Anonymous
November 18, 2007 at 10:12 pm

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!

Hello Everyone!

Anonymous
November 17, 2007 at 6:52 pm

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! 😀

Hello Everyone!

Anonymous
November 17, 2007 at 6:01 pm

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.

Hello Everyone!

Anonymous
November 15, 2007 at 10:36 pm

Helga I am older than you it was two years for me on November 6th. It has been an interesting two years with highs and lows. Fears and tears too! I am glad that you are here celebrating with me! (((Hugs)))

Hello Everyone!

Anonymous
November 15, 2007 at 1:22 pm

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~! 🙂

Hello Everyone!

Anonymous
November 15, 2007 at 11:59 am

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!

Hello Everyone!

Anonymous
November 15, 2007 at 11:51 am

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! 🙂

Hello Everyone!

Anonymous
November 13, 2007 at 11:07 pm

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!

Hello Everyone!

Anonymous
November 12, 2007 at 10:03 pm

[B][SIZE=”7″]GO RANDY! :p GO RANDY! 😉 GO RANDY! 😀

What a great post to read just before I turn in for the night! Keep UP the GOOD WORK![/SIZE][/B]

Hello Everyone!

Anonymous
November 12, 2007 at 10:52 am

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!

Hello Everyone!

Anonymous
November 10, 2007 at 2:09 pm

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:

Hello Everyone!

Anonymous
November 9, 2007 at 1:56 pm

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?

Hello Everyone!

Anonymous
November 4, 2007 at 12:56 pm

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

Hello Everyone!

Anonymous
November 4, 2007 at 12:44 pm

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?

Hello Everyone!

Anonymous
November 2, 2007 at 9:05 pm

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!

Hello Everyone!

Anonymous
November 2, 2007 at 8:39 pm

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!

Hello Everyone!

Anonymous
November 1, 2007 at 9:48 pm

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!

Hello Everyone!

Anonymous
October 27, 2007 at 9:41 pm

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!

Hello Everyone!

Anonymous
October 23, 2007 at 12:29 pm

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!

Hello Everyone!

Anonymous
October 16, 2007 at 2:41 pm

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. 😀

Hello Everyone!

Anonymous
October 16, 2007 at 2:02 pm

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!

Hello Everyone!

Anonymous
October 16, 2007 at 1:45 pm

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. 😮

Hello Everyone!

Anonymous
October 13, 2007 at 10:20 am

Amy that is a very nice article and I wish your Mom further success! Thanks for sharing it with us. 😎

Hello Everyone!

Anonymous
October 12, 2007 at 2:27 am

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!

Hello Everyone!

Anonymous
October 12, 2007 at 2:07 am

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!

Hello Everyone!

Anonymous
October 12, 2007 at 2:07 am

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!

Hello Everyone!

Anonymous
October 11, 2007 at 1:03 pm

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

Anonymous
October 10, 2007 at 3:30 pm

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!

Anonymous
October 10, 2007 at 5:34 am

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:

Hello Everyone!

Anonymous
October 7, 2007 at 10:37 am

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.

Hello Everyone!

Anonymous
October 5, 2007 at 11:42 am

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!

Hello Everyone!

Anonymous
October 3, 2007 at 4:56 pm

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!

Hello Everyone!

Anonymous
October 3, 2007 at 9:01 am

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. 🙂

Hello Everyone!

Anonymous
October 3, 2007 at 12:19 am

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]

Hello Everyone!

Anonymous
October 2, 2007 at 11:12 pm

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!

Anonymous
October 1, 2007 at 12:33 pm

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. 🙂

Hello Everyone!

Anonymous
October 1, 2007 at 12:32 pm

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.

Hello Everyone!

Anonymous
October 1, 2007 at 11:33 am

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!

Anonymous
October 1, 2007 at 10:45 am

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! 🙂

Hello Everyone!

Anonymous
September 28, 2007 at 9:04 pm

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. 😮

Hello Everyone!

Anonymous
September 21, 2007 at 5:44 am

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!

Anonymous
September 21, 2007 at 4:49 am

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!

Anonymous
September 19, 2007 at 4:03 pm

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!

Anonymous
September 18, 2007 at 10:22 am

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!

Hello Everyone!

Anonymous
September 17, 2007 at 8:15 pm

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!

Anonymous
September 17, 2007 at 8:39 am

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.

Hello Everyone!

Anonymous
September 17, 2007 at 7:33 am

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!

Anonymous
September 17, 2007 at 6:47 am

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!

Hello Everyone!

Anonymous
September 17, 2007 at 6:38 am

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

Anonymous
September 17, 2007 at 6:29 am

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!

Anonymous
September 12, 2007 at 9:49 pm

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.

Hello Everyone!

Anonymous
September 12, 2007 at 9:38 pm

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!

Hello Everyone!

Anonymous
September 12, 2007 at 9:22 pm

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!

Anonymous
September 11, 2007 at 9:18 pm

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!

Hello Everyone!