Gbs/cidp Exercise Family
AnonymousFebruary 6, 2007 at 9:11 pm
Welcom to the GBS/CIDP Exercise Family …….Exercise at your level with support from your GBS/CIDP family! We support everyone from the beginners to the advanced! We would love to hear your story!
Use this forum to talk to others that exercise to keep those muscles stronger, but let those nerves keep slowly healing. We suggest that you check in to report your personal routine each week so you can later lean back and read about your progress no matter how slow it might be! The idea is to make a healthy commitment to keep on moving, stretching, stenghtening. Breathing, flexability, range of motion, balance and stamina can be a healthy gain if done correctly while you take in consideration your GBS/CIDP. Even avoiding some illness or at least try to maintain a healthy status or even avoid some diseases can be gained by encourage from each other.
This thread will not be a competetion but should be used for those that need support from your GBS/CIDP Exercise Family. It can be very helpful when trying to come up with a safe program or ideas for your own routine.
We will find that as we become healthier slowly with exercise that can improve your mood, help relieve insomnia and make a big difference in your life.
[COLOR=”Red”]Warning: Don’t start any exercise program without the permission of your Doctor. [/COLOR]
[*]Start out doing something you enjoy! Makes it easier to stick with an exercise program if it is some thing you enjoy doing.
[*]Start out doing something you enjoy! Makes it easier to stick with an exercise program if it is some thing you enjoy doing.
[*]Also, start out SLOWLY Less is MORE…if you feel pain STOP, listen to your body. Give your body time to heal between secessions. Most of the best benefits are achieved by doing something like lifting weights every other day rather than daily. Start with a low amount of time exercising each day! Also start out with just the movement slowly with out any weight or resistance at first. Be kind to your body, it has a long journey ahead!
[*]Remember to warm up and cool down. Even if you exercise for only 5 minutes a day it has benefits, with your weekly report you will start to see progress, but don’t build up that program too fast! Listen to your body!
[*]Make sure you work all areas of the body with your routine. Upper body, lower body and the core!
[*]Enjoy working out with your GBS/CIDP Exercise Family! [/LIST]
AnonymousFebruary 7, 2007 at 2:11 pm
This morning I did my stretching exercises. Some were while I was still laying down for the legs. I continued to do several exercises for the upper body and breathing while I am sitting at the kitchen table waiting for my cup of tea! I did a few leg lifts and stretches for my spine or core working on my breathing the whole time. I have a tendancy to hold my breath when I do an exercise! After I felt like I was warmed up enough and limber, I got serious and turned on the radio and walked in place for a song or two while I watched to dogs run in the back yard in the snow. Brrrrrrrrrrr!!
I try not to do all my exercises all at once. I spread my exercise out over the day….5 minutes an hour….over 12 hours that adds up to an hour of exercise and most important it does not make me over tired.
Anyone going to join me? To be a family there has to be more than one member!! LOL Come on! Move it Move it Move it!
AnonymousFebruary 7, 2007 at 11:13 pm
Thank you JayDee! 😀 I get tired at times and have to choose the computer keyboard or the couch…..you made the right decision. I work out with hand weights on Monday, Wednesday and Fridays and try to do a variety of things. Today I just stayed home and did my routine here. It is nice after 15 months I can see how I have slowly moved up from the 1 pound hand weights to a slower routine with 8 pounds. Does not take much water in a plastic bottle to make up a few ounces to start! I have come a long way! Tomorrow I will swimming and do some relaxing in the rehab pool! I do that on Tuesdays and Thursdays!
I don’t expect everyone to post every day, so that is why I said once a week would be a nice amount to just check in and see what everyone else has picked to use as their exercise!
AnonymousFebruary 8, 2007 at 7:42 am
Kit, When I was first diagnosed I had been very active. After a year of PT I promised myself I would always keep up the suggested program. It had an obvious affect on me physically and mentally. Then I ran into a wall, was carring for my wonderful father who eventually lost his battle with cancer. I stopped the exercising completely as I was exhaused at the end of each day; working and caring for my father.
Fast forward about a year, I had some minor surgery which really brought back the GBS risiduals and my mom was now needing care. So I headed back to PT to jump start myself mentally and physically.
Your suggestion is just what I need. A committment to check in and make sure I get up and go each day.
The Therapist had me doing some work with an exercise ball for core strength. I find it very relaxing as most of the initial movements were stretching and balance. I’m gradually addding 2 lb. wts. for my arms and beginning some leg exercises on the floor.
I kept a journal the first time around and it really helped to see the progress even though it was extremely slow.
AnonymousFebruary 8, 2007 at 2:06 pm
JayDee I think alot of us here are in that generations that we have either had to be the caregiver to our parents or are very close to that situation. It is a hard position to be in between the older generations and the younger generation. Sure is hard to keep up the energy level both mentally and physically…to have this happen to me after being a member of a fitness club/spa …it was very hard and I missed it, now I am just about able and go back and join my friends in all the classes that are for all levels. They show you the different levels so we can all exercise together. I also like this place because there are many many seniors that go there! It is for families but they are not there when I am there. It is nice because it is open from 5:30 A.M. to 10:00 P.M. so I have no excuse to miss because I was busy. It is very close to my home also which is a big plus. I find that it is beneficial to me to relax me and I sleep better. When I get up I feel rested and ready to tackle a few things around here. Those exercise balls were actually first used in Sweden I think for their rehab programs. What a contribution to the medical world. I use mine while I am laying down in the morning and some of the things I do in weight lifting on the balace ball. They really do created stability in those core areas. We all can use exercises to work all those tiny muscles that cause cramping in our hands and feet and around our hips. It is nice that they come in different sizes according to your height. I can actually reach the floor better and they do help with good posture!
Today I did two classes in the pool (84 F), one for Arthritis and the other was for balance and flexibility called Ai Chi…..both were slower placed from the ones that were my favorites where we did aeroblics that worked in the upper body and lower body and cardio! Then I go over to the rehab pool (94 F) to relax and warm up! I stay warmer in the regular pool when I do the Aqua Aerobics classes…but don’t want to over do it! I will get back to the weights and machines tomorrow and hope to rest enough to joine the Yoga class in the late afternoon! I am really struggling with that class since I was in rehab and they did not teach me to crawl or stand up from being on the floor. I had trouble with an injury to my left shoulder while in the hospital and then fell against the toilet a month after I got home from the hospita. That arm is still weaker than the other arm and I do not push it with the heavier weights. But it is coming along nicely during swimming. I am getting there…..this is the year!
AnonymousFebruary 9, 2007 at 9:42 am
I’m here now and I think this is a good idea, BUT, very very few of our members will see it in “general questions”. I know I only read through “general questions” when I think to check if maybe a new member didn’t know where to post about their syndrome. I don’t know how to do it, but try to move it to the MAIN FORUM where everyone GBS/CIDP and caregivers go. Or post a notice in those forums so our members will come here because, when we pay attention to our fatigue limit, exercise is important.
Today, I will be laying on my bed and doing exercises that will stretch my feet. The forward movement in my feet is almost non-existant. I think since our muscles are not damaged, that we have to do things to make them move ourselves, PATTERN THEM.
AnonymousFebruary 9, 2007 at 11:23 pm
[B]JayDee>[/B] I think the idea of keeping a Journal is great! What I do is usually take Sunday off from exercises to give my mind a rest and only do some breathing and stretches. If I have cabin fever I might add something else but usually that is my day off to look back at my Journal and think where I can add something or is there a part of my body that is weaker than the others and I focus on finding an exercise that will increase that area’s strenght or flexibility. A few weeks ago I added some exercises for my thumb! Yes my thumb! Not just one of them but both of them. I went back to the OT and asked him if he could give me some things to help ease the cramps I was getting in my hands. Mainly the thumbs. They were taking turns cramping up and pulling the thumb right down to the palms. It was not a trigger problem and no clicking so he gave me a few exercises to try for a week and then report back to him. Glad to say that the spasms are fewer each day and I will continue to check in my Journal and write down any weird things I need to go over with my teams of Doctors. I still have one short tendon that runs between the hand and the thumb when I try to make an “L”. That is starting to stretch out also!
[B]Liz>[/B] I agree some might pass us by for right now, but your idea is good about putting the notice on the other discussions. If you want to do that while you are there….I would appreciated it! They listen to you more than me! LOL I was not sure where to put this thread and I know it will help others think about what they should be doing too! Look at you seeing results and working on rehab. I am proud of you! I also had problems even getting my legs to lift off the bed in the hospital and I worked on that alot in rehab. That was one of the areas that I worked on for months. Now they are working well but do need strenghtened. I am trying to be patient and work on getting my back stronger and my hips. I know I am not going to regret my efforts for working the larger groups of muscles, but also important not ignoring those tiny muscles. I hope you can get into a pool and just move the water around with your legs that really helped me to get those legs stronger if only by treading water. But there is nothing wrong with starting out laying in the bed. I just found working without gravity was easier when starting any exercise. Then I moved up the challenge in the pool by walking and actually marching around the pool. Leg lifts also helped me. A few to the rear and to the side while just standing in the water on the edge of the pool. Eventually a few to the front. They gave me a weight on the bottom of the pool to move forward with my foot starting out flat on the floor and sliding the weight forward….was pretty easy under water. Really helped with the stamina in my legs.
Everyone remember to get your rest! Exercise and your body will do the rest!
[COLOR=”Blue”]HINT:[/COLOR] Drink water to replenish what you used to keep hydrated, but to also flush the toxins out of the muscles and out of the body!
AnonymousFebruary 10, 2007 at 11:35 pm
My exercises are going to be the same on a week to week, month to month basis, homework I bring home from PT, so I won’t be posting daily. Right now it’s just simple stretching. Stretch one leg out straight, lean forward until you feel it, hold for a count of thirty//do other leg to a count of two.
Second exercise is to tug at my foot and pull it forward (I use a knitted wool scarf to pull the foot, gentle on my hands, easy to hold), hold for thirty seconds// do other foot to just a count of two.
And do it every day for a week.
AnonymousFebruary 11, 2007 at 1:09 pm
[B]Hi Liz![/B] Thanks for posting! That is the nice thing about exercise you do a routine that is customized for you and you don’t have to post here everyday unless you just want to let everyone know you did your exercises today and just wanted to say Hello! Like today I take Sundays off but I felt stiff from riding in the car yesterday. So today I am only going to do Yoga just to relax mentally and physically.
My routine is not exactly like yours and after reading your posts some of the exercises you are doing I did them in rehab in the hospital and some I am doing now. I know how much they helped me and hope you get the same benefit out of them as I did.
Since my neck is stiff today I will mention it to them in rehab tomorrow and they will give me something to strenghten my neck and shoulders! Also today my hands are burning so they might offer some suggestions to relieve that or put hot wax on them or cold packs depending on where they are bothering me…..or that might be gone by tomorrow. WHO KNOWS! I do know that vibrations from a car ride or running the sweeper makes them burn, so chances are this is from the car ride 45 minutes of travel each way is alot of vibrating and trying to hold my head from swaying back and forth. My truck is sure not a comfort ride! LOL I don’t want to give up that 4 x 4!
Each day I feel better but also notice when one area gets stronger then the weakness that is left really shows up. Then we take care of that…it is an on going process. I have only seen good benefits from it!
[B]JayDee>[/B] I know what you mean about taking care of family members and struggling to keep your own life and household functing smoothly. I consider myself in the slowlane now and think I am enjoying not seeing life fly by as quickly. I am getting better slowly and my world has slowed down some. I am taking time to enjoy it! Hope all goes better for you and your family!
[B]Everyone>[/B] Have a productive week!
AnonymousFebruary 13, 2007 at 9:27 am
Count me in on the exercise thing. Just returning to f/t work, fitting it in my day is hard, but essential. I have resistance bands under my desk at work. Just a little background, a year ago today I was in the hospital just out of ICU w/GBS. Yesterday, my exercises were:
2 sets of 10 w/resistance band working front of deltoids. then at night, I did squats 2 sets using stability ball betwwen my back and the wall. Stability ball is great for core and balance. also, i did 2 sets of 10 calf raises on the stair, and also 2 sets w/dumbells laying on floor, working a set of muscles on the rotator cuff. I still have noticeable weakness from GBS in my core and hip and shoulder areas the most. These muscles need the most work, however over the year my calve muscles have disappeared due the lower amt of activity. 🙁 My goal is to start running again one day.
AnonymousFebruary 13, 2007 at 12:34 pm
I know what you mean about loosing muscle! You will do great! I don’t know how you are able to do f/t that is terriffic! I am still struggling with getting this whole body in shape. I am working on everything slowly. Was doing something last night and noticed I could not do something, but forgot to write it down to find out what exercise would help that area. Now I have to wait till I do it again to remember what it was.! I am hoping this thread also helps me remember those tiny muscles. Oh the big ones complain [B]OUT LOUD [/B]so I can not forget them! LOL I am glad you are here to join us and don’t feel you have to post everyday! I know I am not able to keep up some days. One thing about exercise, is you can split it up into smaller times through out the day or through out the week! I pretend to run after the dogs to play and they just look at me like I have lost it! I have lost the grace out of graceful! 😡
AnonymousFebruary 13, 2007 at 8:07 pm
Kit, seems like not many of us are in a regular routine, unless it is with physiotherapy. It’s hard to get myself motivated when that “fatigue factor” is always lerking nearby.
Since your original thread on the exercise family, I’ve been more faithful here at home with my routines. I don’t do the same thing each day. Even when I taught exercise classes, pre-GBS, I always stressed to use alternate muscles when exercising daily. So I’m trying to practice what I preached.
Had a “snow day” from school today and called all my friends who are teachers to see how they were spending their day off. My husband decided to tear into a kitchen project we have been putting off. I hate seeing hime working so hard on projects we used to do together, so my exercise today was stripping wallpaper. I’m pooped!
But I do feel like I was able to help out a bit more than I had been. I just hate feeling so extrememly exhausted afterwards.
Oh well, there is that sense of accomplishment in having done something productive.
Keep the thread going…
I see Liz mentioned the exercise family in another area. Thanks Liz, maybe we’ll get a few more to join.
AnonymousFebruary 13, 2007 at 8:27 pm
[B]JayDee>[/B] I agree with missing the time we spent together on projects in the house and outdoors. The good thing about exercise that we do can be easy or at a different level…each day is different. I always say do less than you think you can do and just do it more often….the time all adds up but avoiding fatigue is the upmost important goal. Even on those days I call lazy days I still do stretches and the easier things I had in the orginal PT & OT. Might be basic but it does a body good to move than to just goes thru the movements! I make sure I get that little stretch or hold a position longer. Some days to my tapes, I do one exercise to every three they do it on the tape. But I am doing it! I am moving for 20 minutes! So are they! I also know it is very important to do something you enjoy. Some days I am on the phone more than others. I walk thru the house just walking with the phone. Some phone calls I get in a 20 minute walk and some I walk for more! I can use that walking as my warm up exercise or cool down time but I have enjoyed it. Like walking with a friend on a rainny day! Also I turn on the bright lights in the ceiling while doing exercises….tricks me into thinking it is a sunny day! Hard to get into the groove but easy once you start to move! I am also working on eating smaller portions by keeping on reading those labels and making better choices. My Journal keeps me motivated again too! 😉
Thanks for being my exercise buddy!
AnonymousFebruary 15, 2007 at 9:21 pm
I attempt to teach Physical Education 3 days a week. My school has been wonderful since the initial bout with GBS. So I work Mon, Wed, Fri. Some days I get in the car at the end of the day and feel like I can’t possibly drive the 20 minutes home. I’ve had a few times where I was forced to take time off from school to catch up physically. But always felt, once I was back, that it was good for my mental state of mind.
Being around those extremely active gradeschool children makes me forget, for just a while, how tired I am. My principal is very understanding and will work with me so I can continue to keep the job.
I’ve told her many times that I listen to myself teaching the children what they need to do to be healthy and keep an active lifestyle and find myself realizing I need to practice what I preach. Stay physical. Keep moving, no matter how little it is, still move each day.
So today, during our rollerskating unit, I bent over and tied and retied many pairs of roller skates. I was so exhausted by my noon hour that I hid in my office with my feet on my desk and didn’t think I’d be able to finish the day. But when the 2nd graders came in the gym after lunch, squealing with excitement, and left thanking me for “a fun day in the gym” I knew it was all worth while.
Keep on keepin’ on,
AnonymousFebruary 16, 2007 at 2:02 pm
Ok-yesterday I took an exercise break since I have been *snowed in* for the last 2 and a half days doing excess amt of housework! ON wednesday I did leg lifts working the inner thighs, and I did push ups off the couch. Still too weak to do them from the knee on the ground (I can do a few – not easy tho). I also sat on the stability ball and did pelvic tilts. Is anyone familiar with a disc you stand on that works the core? I think I am going to get one.
AnonymousFebruary 16, 2007 at 10:51 pm
man, reading all that you guys are doing makes me feel like such a whimp! squats-that just makes my muscles scream just reading that word, let alone trying to do one.:eek: kudos to all of you for doing what you are doing! all i can muster beside the little daily activities i do is a little walking around the mall a few days a week. keep up the great work everyone!:)
AnonymousFebruary 16, 2007 at 11:38 pm
Cheryl, I know what you mean, I’ll join you in being a whimp because I was BS (before syndrome), but can I get by with using my wheelchair as an excuse! I did do the whole perimeter of the mall without even stopping, that’s arm strength isn’t it? And my legs did peddling.
Tomorrow, I’m going to use my arms and try again to get that big heavy bleach bottle out of the box!
I’ve got to get myself in shape, I’ve got a great vacation coming up and I want to do things.
AnonymousFebruary 17, 2007 at 5:58 pm
Liz, so where are you going on vacation. Getting ready for a trip can be plenty of exercise in itself. Maybe you could get some 2 lb. dumb bells and use them from your chair. There are so many things you can do for upper body strength while sitting down.
We can’t forget the stretches and deep breathing…that in itself often makes one feel so much better.
AnonymousFebruary 19, 2007 at 10:42 am
😀 Liz –
There is a video exercise line called “sit and be fit” that may be of interest to you. About your bleach bottle – you are so right about those big stupid bottles! When I came home from hopsital and at home recovering, I started buying the All small and mighty detergent b/c it is in a small liftable bottle! So what do you have planned for vaca?? We want details! 🙂
AnonymousFebruary 19, 2007 at 2:41 pm
I agree with everyone just putting in the effort for those first few exercises is the hard part. Once you get started then you can add things you know you are able to do and use them after you warm up with those stretches and some great breathing exercises. I get out my pages they gave me from OT and PT and do them but try to find some exercises that take them to the next level. I don’t try to set a time limit to exercise, I listen to my body and do what I can. Even if watching a tape and I get bored or have to sit down, I finish out that tape with things I can do. I was once told in rehab that it is important to move that finger or leg just one inch. You don’t have to move it a foot. The distance is not important as is getting that finger or leg to move. Then you are using that muscle. As it gets stronger the movement will get greater with ease! That is the method I use. For example: When I first started to walk I did baby steps…..now I can take a normal stride as everything come together! Every so often I might even throw a few speed steps in that distance to bring up my heart and breathing rate.
[B]cara> [/B] That is a very nice video you mentioned. Sounds like it would be easy but it even challenges the fit person by holding the moves for longer periods of time.
[B]Liz>[/B] I wish we all had a bit of your attitude! Keep up the good work! I know you are fitting all this exercise into your busy schedule!
[B]Cheryl>[/B] Come on and take a dog for a walk! I can lend you one!
JayDee> You fit right in this group! Thanks for the support and the great posts!
I have been keeping up my schedule and here and there just adding stuff here at the house. I enjoy my swimming more than I like the machines, but I grin and bear it! Monday, Wednesday and Fridays are on the circuit with the machines. YUCK…..I think they are boring days. Swimming we laugh and splash in the water, get yelled at by the instructor for making too much noise! It is a nice part of exercising with a group!
AnonymousFebruary 23, 2007 at 12:02 pm
Hope everyone is working sincerly to keep an exercise program going! You are worth it!
[B]Cheryl!>[/B] I think you misunderstood this program! That dog has you trained! You are being manulipulated by Man’s Best Friend! We need to get you educated so you can train your dog. Dogs can be bad influences….they would rather be fetching couch potatoes….when the couch is not comfortable they rip it up! We are trying to get back to our dance cards and tear up a few rugs….not destroy the bed! I am worried about your program or maybe it is your manager or is he your personal trainer? LOL Please promise until we can send someone there to help you that you don’t drink out of the toilet!
I hope todays snow disappears quickly so I can just go get some fresh air with my crew of fetching fools!
Give Henry a big hug from us and he even has you as his secretary writing his secrets! Secrets of Henry!
My idea of getting out more is not going out in the back yard with a plastic bag!
Hope everyone is able to have an active weekend! Next week for those of you that are Cat Lovers we have a neck exercise that will help you look in high places and arm lifts to help get those height loving critters down from the top of the refrigerator! Hmmmmmm, maybe the dog will not be able to find me if I sleep on top of the refrigerator! Cats might have a good idea after all! Remember it is also warm up there that might warm up our feet and hands. Spring has to be around the corner….isn’t it? 😀
I didi my thing this week with the exercise tapes at home too tired to go to the spa and use the pool or the machines. Yoga tape is going to wear out! I did a little bit of walking too….just tried a variety of things this week….last weeks ice storm seemed to effect me more this week than last week. I wish people would clean up their parking lots and walks!
AnonymousFebruary 24, 2007 at 6:34 pm
[B][COLOR=”SeaGreen”]Hey Kit….I’m brand new here and just found this thread. This is an excellent idea as it makes the patient report in their daily routine.
I had a very mild case of GBS. Just saw my regular Doc yesterday who gave me permission to start on my Universal Gym doing light weight work outs. I plan to start Monday as I’m still out of work on disability.
I’ve tried maintaining a walking program but our weather here is not being helpful with all the ice we’ve had. Hope to get back to that soon.
Because my sense of taste has been affected I am eating much less and not eating anything after dinner time (I used to hit the cookie jar around 10 or 11 PM every night…..heehee), but because of reflux from the GBS I can no longer do that. End result is I am now down about 15 pounds and looking to get back in my 34″ waist jeans. I’ve got a ways to go and I know from what I’ve read here that going slow but sure is a good thing.
I hope to post monday night and let you all know how the first weight session went. Thanks for your thread.[/COLOR][/B]:)
AnonymousFebruary 25, 2007 at 2:29 am
kit you are too funny!:D
i did my walking today by going shopping at the fabric store twice, at the grocery store and at the basketball game. i’m soo tired and sore all over, can’t wait until i can calm the screamin’ muscles and nerves down some to go to sleep. will do my whole body workout tomorrow by shoveling this snow/rain/sleet stuff we are getting. watchout kit, its coming your way!:D
hey if i borrow a kitty from you i can get all types of exercises in by hanging on to Henry’s leash while he chases the kitty!:eek: might not be on my feet afterwards!
AnonymousFebruary 25, 2007 at 9:07 pm
[B]Cheryl>[/B] You must not own a cat! They are above exercise programs! They just lay there and watch for a moth to fly out of your gym bag! So far this storm has been kind to us! Don’t do too much, give your body time to rest!
[B]snevets82>[/B] WELCOME! I am sorry for replying so slowly. I keep a little journal and add to it to keep a variety of exercises going. I review it on Sundays and see if there is a place I can add something to compliment my routine. I increase slowly where it will be most beneficial and complain constantly! Remember to pick something you enjoy for your exercise program. Glad you joined us to give us support….let us know where you need support or new ideas!
Today I reviewed my Journal and I am going to just leave things as they are for this week. My schedule with Doctor appointments will be about all I will be able to handle, without setting myself back! 🙂
AnonymousFebruary 27, 2007 at 5:52 pm
[COLOR=”SeaGreen”][B]No problem with your delay Kit…..24 hours is still pretty good.
I hit my Universal Gym yesterday afternoon working my upper body and arms. Did very low weights and more reps than normal just to get a little burn. Then hit my Nordic Trak Ab Machine for about 12 minutes doing low leg raises and ab crunches, but very slowly.
Total wok out time was about 35 minutes. Still too icy around here to take my walk, but hoping by the weekend it clears up enough to get back out there.
No ill effects for the work out today. Just a little soreness in my muscles and that’s a good thing. Will hit them again tomorrow doing my legs after giving myself a day of rest and will report back.
AnonymousFebruary 27, 2007 at 8:21 pm
well, last fri i did some upper and abs work at my s-i-l’s house. her cat was sitting in the front window and i was bending over and throwing small chunks of snow at the window-runtie kitty would bat the window thinking she was hitting the snow clump and acting too cute. this was repeated for a good 10 mins in the cold!
yesterday i was informed by my mom that i was up to walking 1 mile around the mall, and i had just added stairs into the walk also. today i’m hurting and took a much needed rest for half a day.:cool:
AnonymousMarch 1, 2007 at 6:14 pm
[B][COLOR=”SeaGreen”]You do what you can do CodyStanley. Thinking about it is 75% of the battle.
I hit some light weight leg presses yesterday. High reps with 30 pounds of weight. Again went for a burn and did the reps very slowly especially on the return movements.
Not sure I’ll do anything again until Saturday to give my body a chance to recover. The ham strings were yelling at me a little today, but again that’s a good sign.
I might just do ab work tomorrow……slow reps equal good burn.[/COLOR][/B]:D
AnonymousMarch 3, 2007 at 8:42 pm
[B]CodyStanley>[/B] GET BACK HERE! We miss you! Keep moving that is what we all are doing…remember exercise works muscles by stretching, lenghtening and strenghting….sounds like you are doing that then some!
[B]snevets82>[/B] Watch going for the burn, with GBS that can catch up with you and set you back if not set your body back toward an onset. Listen to your body. Working with the machines put a day inbetween those days to let the muscle heal. Sounds like you have a nice variation going for yourself!
[B]Cheryl>[/B] I love to play with cats they are so comic and quick! I love to watch two kittens play together too. I like to be entertained! Can you tell? I am trying to teach the parrot to hoot like an Owl! I may regret this lesson!
I left things alone last week with my exercise program and I felt good…..even added and got a few things accomplished around the house! Spring cleaning has started! I am making a HONEY DO LIST! Have a good weekend! Thanks for posting and keeping me honest! I feel like I struggle with trying to keep this exercise effective and interesting. I would like to add more swimming if I can to next week!
AnonymousMarch 4, 2007 at 8:07 am
Had to play hooky from school a day last week due to over doing it. It wasn’t from exercise, we were working on the house and even after almost 2 1/2 years I still need a wake up call about how I can’t do the same stuff I used to.
I’ve decided to prioritize my activities. Real exercise, as in the movements I did during therapy, have to come befor daily exercise, such as cleaning, daily chores etc. If I get the stretching, balance, strength and endurance stuff done first then I may be more motivated for the daily drudgery.
Yesterday I started on the floor with leg lifts, all 4 sides. I never tire of the modified exercise ball, lots of stretching and holding with that. Two lb. dumb bells for the arms, and finishing with a little yoga. I plan to work my way back to the treadmill.
It’s because I am continually drawn back to this site, forced myself to re-start. I’ll be back on the floor after early morning church.
Thanks to everybody for checking in here and keeping us motivated.
SNEVETS82, how do you do it?
Keep on keepin’ on
AnonymousMarch 4, 2007 at 12:17 pm
[B]JayDee>[/B] I have 4 or 5 tapes here that use the stability ball or the balance ball. I agree it is a inexpensive addition to any exercise program. I do the usual “sitting on the ball” exercises and I do them at my level. Some things come easier than others. That is how I expose the weaker areas of my body to work on. I also have been able to do most of the “lay across the ball” exercises and that does relieve alot of the tension in the core. I also have added the “pass the ball” exercises that also use tiny muscles as you twist and turn to hold and control the ball as you do certain exercises. Makes things interesting and also makes you concentrate on movements by just not going thru the movements but holding positions like you do in the Yoga routines. I also use the ball for a “weight bench” type support as I do my low weights for the shoulders and it is more comfortable and gives me more support than a stiff table would give. It is also more comfortable than getting down on the hard floor to do crunches etc. I can see why they were first used for rehab purposes. I struggle with the Yoga when it is one of those tapes that make you get up and down from the floor. I am better to do all the standing stuff and then the laying down stuff. I still struggle with anything that needs the upperbody strenght. Also the things that require ab support for my lower back strenght! Right now I am out of rehab because I am too strong to be at the level I am at and not strong enough to do what is required to get up off the floor to a stand position in the middle of the floor like what is required in Yoga. Not very relaxing trying to scramble to the chair to crawl up to stand. I am stuck in a rut! I am being held in limbo between levels of rehab. Grrrrrrrrr Not to mention rest for the nerves to heal and exercise to get the muscle strenghtened. Oh, Have I learned to listen to my body! I have a theory or motto to this process. I do work on my health first and let the house work get behind. Motto ” A hundred years from now, who will know or care that I left the housework get behind.” Laundry might not get done on Monday, but by the end of the week someone will need something washed and do it by Friday! As for the rooms being painted…I might be saving myself time in the long run. Fads in color choices will change by the time I get around to picking a color and get it painted. Look at the money I am saving on decorating! LOL
Have a good day!
Everyone> Work at your level and have a good day!
AnonymousMarch 5, 2007 at 6:23 pm
Kit, you heard me wrong on the yoga stuff…All my yoga moves are done on the floor. No way can I stand on one foot with the other foot on my head.
I like your housework theory, I know it will always be there tomorrow. Just have to learn to deal with the guilt thing.
Have a good week. Keep on movin’
AnonymousMarch 6, 2007 at 8:57 am
Any Suggestions On What I Can Do Until I Find Out What Is Wrong And Know How To Deal With It???
My Feet Have Been Extremely Swollen For Two Weeks Now And The Numbness In Them Extremely Intense. I’m Going To Have One Huge Problem If My Feet Swell Anymore Then What They Are, Because I Am Now Pushing At My Boots To Get Them On. Without The Boots On, I Can Only Tolerate Standing For Seconds.
With The Combination Of The Extreme Swelling And The Numbness, I Don’t Know Whether I Need To Stay Off My Feet As Much As Possible, Or If I Should Use Them As Much As Possible.
I Know That I Have Gotten Out Of Condition And Need To Work On Rebuilding Muscle Strength.
AnonymousMarch 6, 2007 at 2:03 pm
Liz, what is keeping you from going to the dr for your feet? you should! in the meantime, rest, sit down, put the feet up higher then your heart level. keep doing this for a few days-you will get your answer as to whether its from doing too much or too little. the swelling will go down if it is from doing too much, the swelling will continue to increase if it is your body having other problems. don’t stress, drink plenty of water, keep track of the amount of voids you have in a day-important! and do this everyday until you see your dr—whom you should have called by now!!!:) and you might want to watch your sodium intake-not only what you add to food, but how much is in the preprepared foods already.
don’t stress over the outcome of your tests, you have had this condition for years and you have survived this long without knowing exactly what you have, a dx is not going to change a whole lot as far as what you are doing everyday anyway. if that makes sense to you-then you can explain it to me-the mind is running too fast for my 2 fingers to type.:rolleyes:
What are you still doing with your feet down like that-go laydown and put your feet up higher then your heart! Hugs Liz! take care.
kit-african grey? you do too much on your ball-i can’t even sit on mine without help getting on it and getting off it!:eek: i haven’t been on any floor in the last 1 1/2 years. and yes i agree with letting the house work go–except there are days when that is my only exercise!
yesterday i did add another flight of steps to my walking routine. WooHoo!! doin’ the snoopy dance-in my mind!:)
AnonymousMarch 6, 2007 at 2:56 pm
Liz, yeah! What Cheryl said! Get those feet up, now. And see a Dr. Just went through that kind of thing with my mom whom I care for. Swollen feet can be symptomatic of many different things. Our bodies reactions are it’s way of telling us to “pay attention” something needs taking care of.
One issue at a time. Take care of the feet, then report back to the exercise family and we’ll give you some ideas to get movin’.
Take care, I mean that literally.
AnonymousMarch 7, 2007 at 5:21 pm
[B][COLOR=”SeaGreen”]Well Kit you were right in a way. It wasn’t the exercise that got me but the fact that I tried my hand at washing 2 bathrooms and doing the laundry this past Sunday.
By Sunday night I was having more numbness and tingling in my hands and feet than in several weeks. I’ve been saddled with it all week so far and my energy level is real low.
I’m still new at this so I will remember this next time I try anything that may include physical exertion.
I’ll be back in touch after I see my Family Doc on Friday. Would upping my dosage of Neurontin help the hands and feet at all? I currently take 1 300 MG cap 4 times per day every 6 hours.
If anyone has experience I’d appreciate you sharing. Thanks.[/COLOR][/B]
AnonymousMarch 8, 2007 at 9:41 am
First off, I was just waiting on an appointment, I did go to see my new neurologist and I had a friend on friend, rather then doctor/patient, talk with my podiatrist. The swelling in my feet is strictly due to the fact that I am still wheelchair dependent and legs/feet are always in a down position. And of course, ELEVATING them is what I must do. So, I was told to sit twice a day, with my feet up, for a half hour. Knowing what to do and how long is what I needed to know in order to do it. Once I get the swelling down and my STRESS under control, I can get back to physical therapy and exercising.
I wonder what I can do to exercise the feet while I am sitting with them elevated?
AnonymousMarch 8, 2007 at 7:38 pm
Liz, here is an easy exercise while you are sitting with your feet up. Flex your ankles (meaning pull your toes toward your body) hold that position then relax. Then reverse it, point your toes away from your body, hold it about 5 seconds then repeat. You just need to be careful not to hold the position too long or you might get a cramp in the foot.
Another good, yet simple exercise to strengthen the ankle and calf muscle is to pretend to write the alphabet with your toes; one foot at a time,
once each day, go through each letter of the alphabet.
That should give you a start.
As far as the stress, deep breathing exercises will do wonders. Inhale, while expanding the rib cage, then exhale trying to contract or make the rib cage smaller. Think good thoughts while doing your breathing. Do it daily, you’ll be pleasantly surprised.
AnonymousMarch 8, 2007 at 10:53 pm
[B]Cheryl>[/B] Nope Blue Fronted Amazon…..my buddy during the past 16 months with GBS. I wish I had him at the hospital with me to say Hello as someone entered my room! Sad news here yesterday I had to put my German Shepherd Dog “Coach” down yesterday….he has just turned 9 this month. He will be missed! I find the balance ball is very relaxing….I can sit on it at the computer and just let my balance work those tiny core muscles. I do slide backwards at times and sit in the hall way where I can hold on to both walls for balance. I can slide down it and have the ball rest under the small of my back and do a few exercises but I don’t keep up with the tape on the number of reps…..that speed will come as the stamina and balance gets better. I can get on the floor and have to crawl over to furniture or a wall and use that to crawl up. I can not come off the floor from crawling to the kneeling postion….I am having difficulty with this for months now….I feel it is holding me back. Strange part is I can lean over and pick something off the floor and stand right back up. The back is strong enough with the abs to do that. I can not just rear up from crawling and standing up without holding on to stable furniture is impossible. I used to be able to get up and down from any position….can you tell I am FRUSTRATED!?
[B]snevets82>[/B] Times like this I wish I was not right….hate to see anyone do too much….I just talk from experience…. I did not listen to my body ONCE and I colasped….last time I did that! Took naps and still do to avoid using up all my energy. Since then I have learned to pace my week not only my day. If I have done a little housework or grocery shopping…..I do back off the exercise routine that day. I let it all equal out over the week. I watch carefully my weekend because they can be off my routine and Monday I will pay for that…..so I rest often when family is home on the weekend. I let them pick up the slack! I do one wall instead of what I could do before. I can get a whole room done in a week…..worst thing is NO ONE even notices I did them. Went out with the girls for lunch and some shopping today to get my mind off loosing my dog and will not plan much for tomorrow….so far the stress has not caught up to me. I will back off on some of the exercise tomorrow too…..I might not do the floor exercises but go swimming and do the aeroblic classes in the water…..less energy is needed but the movements are the same…..muscles are still working….just not against gravity! I often do my walking in the water or riding a bike type peddling while sitting on a Noodle (kids foam floatation device).
[B]codystanley>[/B] Let us know what the Doctor says! I agree with everyone’s posts….still do your breathing and stretching and lenghtening exercises they will not cause any swelling, and probably will not decrease it either. This is caused by an underlying problem. I had to go to a specialist that treated the swelling. Don’t take a hot shower or bath during this time is what i was told. HOT TUB was out as were the Sauna and Steamroom. I just said, “OK”, but I knew my skin could not stand any of those things anyways. My hands even hated to do dishes! I use them too much and they burn and then itch. They also hate typing so I have cut back on the internet time too! They even hate to hang onto the telephone, so I had to cut back on that time too!
[B]JayDee>[/B] Funny you mentioned writing the alphabet with your toes. I had to do that too and I got good at using those bad words with my toes too! I even had a nurse or two when I was not able to speak say….slow down your feet and stop yelling at me! LOL I used to clap when the tray arrived with my meals….woman would just say…..”Your welcome!” “I will be back to pick it up later.” I would then wave Goodbye to them with my toes! I also had the Doctor grab my toes and tell me listen! LOL I had a good staff with a good sense of humor! After I got the trache out, some said they wish I would go back to using my toes….I was asking too many questions! LOL
Keep up the good work!
AnonymousMarch 9, 2007 at 3:44 pm
Hi, my 11-yr-old daughter has GBS, onset about 2-7-07. She cannot walk at all right now, except very short distances with a wheeled walker. (unwheeled type too hard, can’t manage, we tried at PT yesterday). Anyway, she’s made no progress toward walking in a month. I know she is getting frustrated, though she’s got a great attitude. We just found out insurance will only cover 20 PT visits. So she’s only go 15 left! We will pay for more, but at $160+ each visit, along with paying our high-deductible ins–and me missing lots of work (self-employed, only paid when I have hours to bill!)–don’t know how many we’ll manage. Therapist thinks she might be in PT for at least 6 months. Probably more.
So, we are hoping to do sessions of aquatherapy w/ therapist, and then continue that on our own and pay for sessions to check progress. Once we run out of visits, that is. If anyone has any advice or experience with aquatherapy vs regular PT, I’d love to hear about it. My daughter loves the idea of being in the water. She can move her legs, but lots of jerkyness/shakes/instability. Maybe they would work better w/out weight on them. Anything else anyone can think of? Maybe not for right now but when she’s stronger? She is a dancer and it is tough seeing her so incapacitated.
AnonymousMarch 9, 2007 at 9:01 pm
cincymom Your daughter is still in the beginning of this process…is she having both Occupational and Physical therapy? Remember to check and see when your insurance renews….it might be from July 1 to June 30. That way she can use up all the 20 visits and mine gives me 20 OT and PT visits each. Then be off a few weeks and then continue. Remember this is a very slow process and it does really take time. Let her test every little muscle, ligament and tendon in her body and write down the ones that are tight and need stretched. The ones that need to be strenghtened and the ones that are cramping….they will help her with what she complains about along with the ones that are in the normal process of therapy.
Water therapy is wonderful. For those learning to walk it takes the weight off the body from gravity. It gives you freedom that is heavenly. But it can be dangerous till you get the upper body built up so you can keep your face out of the water. Just the water coming back into the pool will take a GBS person off course and throw them in the water. Waves from a class too will knock them around. It is very easy to over do it in the pool and not notice. Coming out once your body is under gravity your legs fell like they can not take another step. The pressure of gravity pushing down feels like a ton and can set off cramping. Your legs will feel like a wet noodle and so will your arms. The pressure can cause pain near the spine….really feels compressed like you have a barrel of books on your head. Most important it is not so scarey when you get off balance the water catches your fall. It will also build up the lung capsity by making you hold your breath for a few seconds as a wave passes by.
Personally I would use up the PT first and also try to do what they show here in that in the pool if that is possible. She can also do some of her stuff from dance in the water too. Most important is to teach those muscles to move even if an inch…that builds strenght…..the distance it moves will come with practice.
I am on my second round of 20 visit right now and they have used up 8 and I am saving the rest so I can get stronger so I can continue to do things in PT to make sure I am doing them the right way and not going to be injured or do them wrong and not get any benefit.
I have a membership in a large fitness club that is connected to our local hospital and when I am not in therapy I go to that. I do use the rehab pool (94 degrees) but do a class here or there in the big regular pool (84 degrees). Don’t let her go into the HOT TUB (104 degrees)!
Just the most important is not to over do exercise! I am doing all this but at 16 months past my onset.
Remember to keep a Journal! According to my Journal at the stage in time that your daughter is I was still in bed learning to feed myself and wash what area of my face I could reach. I was doing any movements in bed and no talk about me even standing at that poiint. Tell her we all say Hello. cincymom hope you know that the hugs you get are for being a great concerned care giver just not for being Mom! Keep her possitive attitude going this is a long process and it can not be rushed!
AnonymousMarch 10, 2007 at 8:27 am
Kit, so sorry to hear about your dog. We have been there several times. Unless you’ve experienced the loss of a pet it’s kind of hard to share your feelings with those who haven’t.
And here you are responding to each one of us individually, and using lots of ‘finger’ energy when you say your hands are bothering you.
This has been a great thread, but don’t feel you need to respond to everybody. We’ll all help out. It’s obvious from your last posts that you need some tlc yourself.
So let some of us take up the slack.
Oh, just to report in…I just crawled up off the floor from my morning stretch and leg lifts, thanks to your inspiration.
You take care!
AnonymousMarch 10, 2007 at 4:09 pm
[B]JayDee>[/B] Thanks that is the second dog I have lost since I come home from the hospital….this time last year I lost my old Yorkshire Terrier. It was fun having so many young dogs..real bummer since they are all about the same ages now. Each one is very special in their own way. This guy was another rescue that caught up to us and pulled at our heart strings.
I have learned to ignore the hands burning….I know it is the nerves and a few posts from the keyboard are not doing any damages….I keep them moving! The nerves get their rest and I keep the muscles moving! I can not give up my computer time….which really is not that much each day! But thanks for thinking about me….posts are just my way of remembering to do my exercises. I might not have any brags about them….I just don’t want to forget to do them all each day.
Tomorrow I will update my exercise routine and see if it is time to add any new stuff. I actually have seen minor changes in the past week….ENERGY LEVEL has increased….not as tired and shorter naps if any at all….hope this is not a fad and will become the normal. IT FEELS GREAT!
AnonymousMarch 11, 2007 at 8:07 am
Kit, I think your post was the first one I read where someone said their ENERGY LEVEL was going up. You must be doing something right. The word ‘fatigue’ is so familiar here. Good for you. I hope it keeps on going up for you.
Daylight savings time hit at a very early hour this morning. Still dark out and although I love the longer days, its painful to get moving this morning. It may have something to do with the fact that we were out rather late last night. When I’m home, I crash very early.
Anyway, I don’t see myself doing the full 20 minutes today, but I think I’ll still try to squeeze in the hand weights and the hot tub. Can I count a few leg lifts in the hot tub as part of a work out?
Have a great day.
AnonymousMarch 11, 2007 at 11:36 pm
[B]Hi JayDee!>[/B] I have always made sure that I got my rest after I got home from 9 weeks in the hospital I was craving a good nights sleep! I am able to sleep during the day as long as I needed. Kid coming home to check on me and the Nurse and OT and PT during that first month or so did make me get up but I planned my day around their visits and did nothing else. As I could move around better then I would sit at a table and clean the clutter. Dust off a counter top etc…….I still let the house work go when I can. Just lately I could notice the naps were getting shorter. I actually think that is was a combo of the ability to concentrate for a longer period of time and did not need a nap as often. I have always tried to plan what is for dinner and even if I can not stand there and make it I have it planned and the things out to be prepared. I how my hubby that for as good as he has been with being my caregiver….he should be getting steak, potatoes and veggies and gravy more often. I do order out once a week and use that priviledge carefully. I worry about starting to cook and then falling asleep and dinner burning or worse starting a fire so if I am not going to be able to sit right near the stove I wait till he gets home from work and then quickly prepare the meals. Getting my rest was the most important and next was eating good foods. Exercise was up toward the top of the important stuff too and I have a brag because all that rehab and exercising has finally paid off! I was showing my Mom what I could not do and told her I felt I was very close to doing it. I got down in the middle of her living room and was in that crawling position…..before I was not able to rear up into a kneeling position without holding on to furniture. UP I WENT INTO THE KNEELING POSITION! I held that position for a few seconds. I expained to her I was not able to do that before but I was getting stronger. Then I told her that I was not able to get my foot and leg under me to stand up by myself with out holding on to the furniture. I got my leg under me and pushed off my leg with my arms which are getting stronger and UP I WENT INTO THE STANDING POSITON! I almost starting crying right there and then! Now that is my ticket to go to Yoga class once I get it perfected by making smoother movements without a long hesitation. I might get up enough courage to go to Yoga class this Friday! I can not wait till Thursday to tell my Rehab Doctor the progress I am making!
For everyone don’t give up it does take time. Don’t give up! Take it slowly and get all the surrounding muscles strong and then you can concentrate on those that are in need of some prayer and extra special TLC! 16 months from onset and I am able to stand on my own! NOW that is a BIG BRAG! That bad shoulder did take almost 8 months to heal and I need that to get that crawl started. 🙂 😎
AnonymousMarch 14, 2007 at 7:02 pm
Kit, I almost started crying as I read your post – from floor to standing! Been there, done that…You go girl! Just not too fast. Don’t push the yoga thing. When starting out that can mean stiff muscles. But good for you. It’s the small things that count. Keep up the good work, slowly.
I’ve been a slacker this week. Sure doesn’t take much to “overdo”. Oh well, I don’t teach tomorrow, so I know what my priorities are first thing in the a.m. Back to the living room floor…
AnonymousMarch 14, 2007 at 9:47 pm
Jaydee> Oops! I did not mean to cause you to be sad, I want you to celebrate each step and each and every bit of strenght I gain with me! we know this is a slow process. I could get down by using furniture and could do my yoga at home. I would not do the stuff in the correct sequence but I would do all the floor exercises first and then get up using furniture and do all the tai chi and yoga standing exercises. That gave me alot of hope. It was just getting up and down between exercises that I could not do quickly in classes. I will let you know this Friday if I am able to get up during YOGA CLASS. I have been doing several lay on the floor…roll to get to the crawl position and get up to the kneel position and stand. I am getting stronger! I don’t feel I will need help now in class and will not be a distraction to other classmates. I think I can blend in if I don’t grunt…that is not part of Yoga! LOL
Everyone get busy and move around at your pace! Breath deeply it feels great! Spring is in the air! Next few weeks so will pollen be in the air.
AnonymousMarch 15, 2007 at 3:50 pm
Kit, sorry to hear about your dog. been there with 2 of my dogs, also. i know how you are feeling. just think, now you can go save another stray/homeless dog in need of some lovin. it helped me with my depression.
i think that is great that you can get up off the floor by yourself–a big dream for me. and now going to yoga-how cool! keep up the good work!!
this week i have been doing my walking, raking leaves out of the bushes and flower bed, sweeping the driveway and deck, washing a few windows and all the normal house things. today i’m still in my pjs and heading for the shower soon. good thing the weather turned 34 degrees colder today, i need the break-arms and hands can hardly hold onto the cane.:(
take care everyone and enjoy the weekend!:)
AnonymousMarch 18, 2007 at 6:39 pm
Two days in a row I’ve done some form of exercise.
Did floor work with leg lifts yesterday and some 2 lb dumb bells for my arms.
Was feeling pretty perky this morning so I tried the treadmill. Made it 10 minutes, including the last 2 minutes backwards, and hanging on really tight. My PT had me doing this a couple of months ago to “reset my balance”. Pretty proud of myself. No bruises or bumps as a result of my “work out”.
Just checking in…
AnonymousMarch 19, 2007 at 2:43 am
jaydee, that is great, i would have fallen on my bum if i tried to do that.:D keep up the good work!:)
this weekend was a slow one for me, the only thing i did today was go shopping with my daughter for a couple of hours.:cool:
hope everyone enjoyed their weekend and didn’t overdo things!:)
AnonymousMarch 19, 2007 at 11:57 am
[QUOTE=LadyKITUSA][B]snevets82>[/B] Times like this I wish I was not right….hate to see anyone do too much….I just talk from experience…. I did not listen to my body ONCE and I colasped….last time I did that! Took naps and still do to avoid using up all my energy. Since then I have learned to pace my week not only my day. If I have done a little housework or grocery shopping…..I do back off the exercise routine that day. I let it all equal out over the week. I watch carefully my weekend because they can be off my routine and Monday I will pay for that…..so I rest often when family is home on the weekend. I let them pick up the slack! I do one wall instead of what I could do before. I can get a whole room done in a week…..worst thing is NO ONE even notices I did them. Went out with the girls for lunch and some shopping today to get my mind off loosing my dog and will not plan much for tomorrow….so far the stress has not caught up to me. I will back off on some of the exercise tomorrow too…..I might not do the floor exercises but go swimming and do the aeroblic classes in the water…..less energy is needed but the movements are the same…..muscles are still working….just not against gravity! I often do my walking in the water or riding a bike type peddling while sitting on a Noodle (kids foam floatation device).[/QUOTE]
[B][COLOR=”SeaGreen”]Sorry about your dog Kit. Losing a pet is almost like losing a child. My Doctor increased my Neurontin from 1200 MG per day to 2400 MG per day. It was gradually raised over a 5 day period.
He’s trying to reduce the amount af tingling in my hands and my feet. My hands are still very numb (thank heavens for spellcheck) so I’ve backed off exercising. The weather has not been good enough for my walking program.
I’m hanging in there and just working on my patience.[/COLOR][/B]
AnonymousMarch 19, 2007 at 10:48 pm
I still use every Sunday to look over my exercise program and see if there is some other form of exercise I can consider to add. I can always use some thing to keep it fun and interesting. I have been doing more lifting and have noticed my strenght has returned in my shoulders and arms. I am able to put stuff on the next shelf up. Not on the top shelves but higher than I could reach before. After turning the clock forward and it staying light later in the evening that did mess up my sleep routine…I wanted to stay up an hour later at night and sleep an hour later in the morning…..too me this long to get that routine changed. I am going to leave the exercise routine alone and work on holding positions longer in Yoga and Tai Chi. Doing each exercise slower and holding that position gives you a better work out. I have noticed that has got alot better and increased my stamina to a point where I am actually benefiting from the efforts. Get this a actually decided that I was going to remove the snow from the whole patio but did not think I could do the whole thing with a shovel…..so I got out the leaf blower and blew all the flakey dry stuff right back into the grass and did not have piles around the patio for the Yorkie to navigate. Only trouble with that routine is that hubby said I did such a good job I can take it over now. I proudly stood up straight and gave him a salute and assured him I have it covered. Oh WHAT have I done? LOL [B]Cherly>[/B] PLEASE don’t send me any more snow! That was the fluffy stuff, what if it is that wet stuff that is only good for snow men? Maybe use the garden hose to melt it off the patio? LOL Where is Spring?
Everyone thanks for the kind words about my loss, I know you understand about loosing a furry child!
AnonymousMarch 19, 2007 at 11:48 pm
The last two months have been very difficult for me. I got the swelling in my feet down, but I’ve been experiencing very intense numbness, which makes it unsafe for me to practice walking. Also, the numbness makes me toss and turn at night and I’m so tired from lack of enough sleep.
I’m still trying though. One of my favorite TV shows started tonight “Dancing With the Stars” and I used the music to move my legs around for exercise.
AnonymousMarch 19, 2007 at 11:54 pm
Liz I am glad you come back and let us know how you are doing! As far as exercise do what you can do. You can always stretch do beathing exercises to get that oxygen into those areas. I am glad that Daning with the Stars has started again. I love to dance and today I put on the radio and tried to do every old dance I could remember if only for a few seconds just to see if I can still move those parts. I was surprised to learn I can still get into those oldies. I still just need some practice with the feet. But today they were Happy Feet! LOL Remember to move your arms and twist at the waist and keep those shoulders moving. This all takes time!
AnonymousMarch 20, 2007 at 5:54 pm
Kit, you’re still shoveling snow? I was raking rocks today. My husband has a huge blower device that attaches to the farm tractor. It’s the only way he can get us plowed out when we really get dumped on, but part of our driveway is gravel and it blows the small rocks into the lawn.
I’ve been feeling a little stronger, so went out for short times, twice today, and raked a few rocks.
It’s going to be a hot tub kind of night tonight.
AnonymousMarch 20, 2007 at 6:21 pm
I wish to join the exercise family. Before GBS I was very active. I would race bicycles on the weekends and put in 150 miles a week. My job would usually involve hiking through rough terrain once or twice a week, usually around 10 miles a day. I was in very good shape.
After GBS, I just don’t have any stamina and I don’t ride bikes very often anymore. So instead of aerobic exercise, I do exercise at a much more relaxed pace. I start off with five to ten minutes of yoga stretches. It warms up the muscles and helps prevent injury when I do the other exercises. I do an exercise routine which was based on my physical therapy. I have about a 45 minute routine, but it takes me an hour and a half to do it.:) Slowing the pace of exercise is an accomodation I have made to GBS. Instead of banging out one exercise after another, I take a five minute break between exercises. It makes a whole lot of difference.
I have decided that I am going to do 200 pushups in a row without stopping on my 50th birthday. Right now I can do 145, which causes a day of suffering afterwards. I am sometimes competition driven, so having a goal keeps me exercising regularly. Maybe you aren’t driven by competition but I hope you find motivation to keep working out.
I am glad the rest of you are doing what you need to in order to keep your body working at its best. It really doesn’t matter if you take a walk, vacuum the house, swim, jog, or play basketball. Any exercise, even if done poorly is better than no exercise at all.
Keep up the good work,
AnonymousMarch 20, 2007 at 7:17 pm
Hi all! Sorry havent been around much lately, but we sold our home, and won a bid on the one we wanted! We’re so excited. However I have been super busy because of this. But, I have been squeezing in excercise. I have made it priority. I even bought a new contraption called a wobble board-you inflate it like the stability ball-(alot less air). It looks like a flying saucer and you stand on it, and it chalenges your balance. I must say, my core seems to be getting stronger, in just 2 weeks. I have been doing just 15-20 minutes a day, but it is helping.
AnonymousMarch 20, 2007 at 9:36 pm
[B]JayDee>[/B] Yep strange weather over the weekend. Now it has changed over from an inch of rain to a pound of SUNSHINE. Spring has Sprung. We did get the little stones of gravel out of the grass. I did not help with that job. I did not mention this blower is a hair dryer for horses and cows. I use it on my dogs and remove any hair that is loose due to the shedding process which is taking place here right not too. I can not handle the extra work in the house due to my furry friends shedding so I use that on them when they go out and they love it! It is strong enough to blow a cow over the moon so the snow was not even a challenge for it! I am out there and back in the house before the neighbors can find the source of the noise! LOL Thursday it is going to be 65 degrees here. Daffodils are up 5 inches and the Pussy Willow are showing silver. We are on the upswing now! Just not time to even open up the pools they don’t do that around here for a few more months and then it takes another month for the nights to warm up the water to comfort level. I wish I could do the hot tub….still just too hot for me! Now I am not green with envy! 😀
[B]Lee>[/B] Your thoughts and reasoning are much like mine! Don’t exercise till you fell the burn…. Pace yourself and do what you body can handle without any effect the next day. I fell at that steady pace I am climbing that hill faster in the long run rather than two steps forward and once step back. I do know that exercise in the pool is so much easier on me and I enjoy the water but I do do more exercise on the land. Just to make gravity work for me a little and challenge me a little and I look better in the sweats rather than the swim suit.
[B]cara>[/B] Your wobble board sounds like it will keep exercise fun and interesting. I am not sure…no I know I am not ready to get on a wobble board at this point. Unless I could take it in the pool and try to sink it to the bottom and stand on it that way like I do with the paddle boards in the club. I will have to see if they have any of them in the club. I think the one I seen was a ball with a wooden ring around the ball that you stand on. They also have the one that is a planK with a round log under it like they use for the jugglers at the circus. I am not really for that one either.
I am very glad to report that the pain and weakness in my back is getting better. I am sure it is from all this exercise I am doing to make it better by working on my back, hips and abs. Your right it is important to work on the core also. Forgot one area and it becomes weak and the body gets injured.
AnonymousMarch 24, 2007 at 11:40 pm
I hope the weather is getting better for everyone. It is sure warming up nicely here. I think I can safely agree Spring has arrived. Time to get fit with any exercise you can manage. I have been trying to increase my walking time and number of steps I take each day. I find this one of the hardest things for me to do. My number one rule I follow is to only walk half as far as you think you can and remember you have to walk back that far so make it a short distance. I go to the stores and feel some freedom when walking with a shopping cart. I find it harder to walk around the block. I find it really hard to find a buddy to walk with. Especially in the morning when I have got my rest and feel my best. I am wearing my pedometer and can see a slow increase with the results but also see it is a very slow process. I guess I am using those larger muscle groups and it does take them longer to get stronger. I am sure those areas like the hands and feet that are the last to heal the nerves might be the last muscles to get the right signals and not waste so much energy? I am just trying to figure this all out. Any input would be appreciated. I am making a visit to the neuro this week so will also let you know what kind of progress I am making during my 16 months into this. Honestly I think he is going to be very happy! I think I am doing very well for having a severe case. Hanging in there! I am glad the Ground Hog did not lie about the weather. We actually had a very mild Winter here.
AnonymousMarch 28, 2007 at 10:46 pm
Did some Spring cleaning on my exercise routine. I plan to add some more walking to the weekly routine. I plan on still doing my routine weekly doing the circuit of machines with very little weight on them. Usually on Tuesday and Thursday when I am not doing the machines, I will do classes in the pool. They offer several aqua aerobic classes, ones for people with Arthritis that are too slow for me I get chilled but can switch over to the warmer rehab pool and do the Tai Chi class in there with the slower Arthritis class. Gives me a good workout but I have to make sure I don’t get over tied. When I try to do too much and come up the steps out of the water I CAN FEEL GRAVITY taking over my muscles. So I make sure like when I walk I do only half as much as I think I can do because you have to turn around and come back to where you started! Spring is here I hope everyone can get outdoors more!
AnonymousMarch 28, 2007 at 11:53 pm
kit you are making me tired just reading what you do. tomorrow i start my aqua therapy. i’m hoping i can do this without ending up in the hospital. the last time i was in a pool i ended up in house for 1 week. my therapist is doing research and we will see what i can do and keep it short and sweet for alittle while. i’m hoping with a.t. and walking and all the upcoming outdoors work, it will keep me from losing more muscle and keep losing more weight.:D positive vibes are going out to all !:)
AnonymousMarch 29, 2007 at 12:28 am
Cheryl, I know what you mean. In combo with what I have done a few days before my workouts and have to do tomorrow. I really watch that. Lets just say I am struggling in come areas. Yoga in class is really funny and sad at the same time. But I just pretend there is not 23 other people in that class with me. Some have offered to help me get up and I just tell them I still am meditating and doing my breathing exercises. Then I bust out laughing! Usually they do too! When exercising at home I split everything up to a little bit each hour.
Weather here is wonderful. Don’t send us any snow, the forsythia is now blooming and the crocus are gone…the deer ate them. I love the Spring/Easter flowers that are in the stores right now. Take care!
AnonymousMarch 29, 2007 at 11:48 am
I recently read an article about an indoor walking program that sounded like it was a possibility for me. It recommended three 10 minute “exercise” periods – one minute walking on the spot or around the house, one minute, side steps, walk, kicks, walk, knee lifts, walk and repeat previous three exercises, adding arms in. That means pumping them – 15 up from the shoulder, 15 down with the side steps, clapping with the kicks and slapping alternate knee during lifts.Each one is done for a minute. I set the microwave timer in the kitchen and watch it for when each minute is up. I can walk around the main floor. I find the second session is much harder so, on the days when I am not too tired, I do 6 minutes. I haven’t arrived at the third session yet but plan to start with a 3 minute one and work up gradually.
Now for some background: I am 68 years old, had GBS in 1963, use a manual wheelchair whenever I go out as I have three different back problems and can’t stand for long or walk far. Prior to starting this, I did yoga and physio exercises every weekday morning for half an hour. I also attend an exercise class that is mostly chair exercises for people with arthritis, which I also have. I feel that the walking is probably more beneficial and I have to say, I am very careful to pay attention to how I feel physically every day. I would certainly not do them if I felt there was a problem and I make sure not to overdo it, which is why I made the second session shorter. It feels good to be able to do this although at the end of it, I am hot and thirsty. I just sit for 10 minutes and then carry on, somethinhg I have to do all day, every day anyway.
It has been fun! Maureen
AnonymousMarch 29, 2007 at 3:00 pm
I hope everyone is doing their best to do their best. We all are working at different levels and sometimes we have to be creative.
[B]Maureen>[/B] Your walking indoor program is exactly how I started out in the rehab pool. By doing one set of the easy exercises to start and make sure I was doing them correctly to avoid being injured. The fear of falling was gone since I was at ease in the water and not being fearful of falling on a hard floor. Having a partner in the pool to be there to lend me a hand if I started to float in the opposite direction than I wanted was also nice having a pool buddy to talk and laugh with. I agree it has to be fun and you have to enjoy what you are doing or you will not keep that activity up. I am still exercising in the pool and now able to do all the stuff you mentioned. But now I have taken it to the next level and have spent all my Winters being indoors. When the weather breaks I take it out to the grass and even have the dogs joining in to make me laugh. Keep up the good work!
[B]Cheryl>[/B] It takes me longer to type about what I do than it takes to just do it! Please don’t let my long messages talk you out of exercising. Listen to your dog, they will always keep you on an exercise routine. We go for our several daily walks around the back yard to check out the flowers coming up after these few days of warmer weather. I mentioned the Crocus are blooming…well now they are not! The deer ate them off right at the ground and the new Day Lily sprouts too!
Went to the Neuro today…..he said I am doing great! Come back if I have a question! None of the reflexes are working in the elbow or the knees! 😮 No biggie!
AnonymousMarch 30, 2007 at 9:38 am
Cheryl, I had not heard anyone mention that they have a problem with loss of muscle mass until you did. Not that I was ever bulky, (thank God) but there was a time, pre-GBS that I had muscle tone. I find getting strength back by using small weights, both ankle and hand held, is very tiring. Lately I have had some pretty painful days with joint pain after trying to use dumb bells and ankle weights. I do a lot of stretching, leg lifts, and large ball exercise…but those things aren’t helping to get the muscle tone back.
I also have the problem of weight loss. It’s hard to decide which way to go on the exercises when you are trying not to loose weight.
Let me know if you come up with any ideas.
Kit, My crocus are just peaking through. My husband did the raking for me, so the hosta can get a little sun and start making their way out of the mulch. I love to do those little walks around the yard and garden to see what is showing up each day.
You gotta love springtime!
AnonymousMarch 31, 2007 at 11:54 am
I have posted my new tests results under the CIDP and the Success Stories forums… I now feel like I am all set to start an exercise program so that when the summer comes I will be able to do more… I still have balance issues and walk with a cane… This hurts my back after going any distance at all (1/10 of mile from our driveway down to the road) and so I have received a prescription from my neuro for a rollator…
Do any of you have any experience, or know of anyone who does, with the above model…??? It seems to be just what I will need… I live way out in the county with no pavements that are “walkable” nearby at all… I want a rollator that would be able to get over pebbles, grass, etc. without me trying to bulldoze through it… This Dolomite Soprano model has 10 inch wheels (bigger than the 8 inch ones that are mostly advertised… I have been in e-mail contact with the company’s rep (by Blackberry….never emailed with someone using one of those before) and there is no dealer nearby who handles it… I will be on my own as far as filing for the insurance (it costs $550) and trying to get them to take it back if it will not do what I want it to do… I will be calling the insurance Monday (taking another “sick day” before my retirement at the end of this school year) and will then call the rep with any concerns or questions I may still have… A dealer in NW Arkansas will then do a special order for me and I will pick it up after paying for it…
Do you have experience with this model or do you have a suggestion as to which forum I should post my question to…???
Thanks for listening….sorry for rambling… 🙁
AnonymousMarch 31, 2007 at 9:03 pm
Aimee> I am sure someone can help you….sounds like a General thread that will generate several responses. I am sorry I am not able to help you out but wish I lived closer to you. You could join me on my walks. I lost all muscle tone and could not do anything for myself….could not even get enough strenght together to use the remote for the tv or the call button for the nurse. Even the soft touch one they have. When I started to exercise they just got me to start moving that was hard enough…..by the time I got home and went to the rehab building after having rehab at home. I did the machines in the gym without any weight on them and I struggled with the weight of the handles. I was very strong going into GBS and it is something I am still working on to gain back a reasonable amount of strenght in each muscle. I can remember someone telling me to let the nerves rest that is what they need…..they muscles need movement to make them stronger but that zaps your energy and too much exercise can actually set you back on the healing…..you just have to take it slowly, so when I go to the larger stores I do use the electric carts they supply the handicapped. I think it would be wonderful to be able to have freedom to move around more. Hang in there!
AnonymousApril 3, 2007 at 10:48 pm
boy i wish i could lose my fat tone as fast as i lost my muscle tone!
well today was my 2nd day of aqua therapy, i enjoy it very much but my body doesn’t. for the last week i’ve been having an increase in pain, tingles, blurry/double vision, fatigue, and so on, all the stuff that tells me i’m going down again.:mad: hope everyone is doing good and keeping at it!
AnonymousApril 3, 2007 at 10:54 pm
[B]Cheryl>[/B] Think the class is too much for your body or just a combo of things? Might want to try just half a class and see if there is a difference. Hope you recover your strenght and get your body straightened out again! Get Well my friend…glad you are listening to your body!
AnonymousApril 6, 2007 at 12:20 am
my aqua stuff is actually aqua therapy, just 30 mins twice a week for now. i would be on the bottom of the pool if it were a class.:o the sad thing is its not that much, i love the water and i wish i could do more but its going to take me awhile. my therapist is learning from me and i have total control, except she makes me rest too much-i am the type to get in do the work and then sit at the jets at the end to rest—-not in her pool, she makes me rest after every 2 exercises i do.:rolleyes: they are really nice people and i enjoy getting out of the house and doing more exercises, so i listen to them. today starts spring break for my kids so i’ll be able to sleep in alittle longer in the mornings, now to get myself to bed alittle earlier is going to be the hard part. take care everyone. keep it positive!!:)
AnonymousApril 6, 2007 at 1:10 am
[B]Cheryl>[/B] Sounds like a very good plan! My Aqua Therapy was 30 minutes too and then they would let me just float or tread water for a few more minutes to stretch what I wanted to stretch. The classes are 45 minutes and I think I mentioned that some of them are for Arthritis patients and they are slower pace…I get cold in those classes….the faster classes I do what I can and can keep up pretty well to the group. But if they get too slow I get out of that pool (84 degrees) and go into the rehab pool (94) and I really do stay out of the hot tub (104) My body temp is stuck in the middle I am never cold when it is cold and I am never hot when it is hot….so I think that is dangerous! So I just use my head! I am able to feel WIND CHILL….Happy Easter! You can shut off the lake effect snow now! Brrrrrrr
Have you heard of the Megabus? [url]http://www.megabus.com/us/schedules/[/url] $1 fare from Pittsburgh to Cleveland
AnonymousApril 8, 2007 at 5:19 pm
I was hoping by this weekend I could add more walking outdoors, but this is the coldest Easter we have had here in many years. I guess I will walk around the pool tomorrow. I walk forward and backward and side steps in both directions. I look like an animal in a cage trying to get out! I once was asked if I needed help finding the ladder or steps! I said “No Thanks! I am looking for the elevator!” Then I busted out laughing and have been friends with that person ever since! Just taking that possitive attitude to another step….added HUMOR! Oh have I learned to laugh at myself! At first it was nerveous laughter, but now I think back on the way I was and just keep laughing. I am tickled pink to see how much I have progressed in only 17 months!
CHIN UP, SHOULDERS BACK and pull that TUMMY in! Especially after that Easter Meal. More exercise for any one? :rolleyes:
AnonymousApril 9, 2007 at 5:06 pm
kit, i’m tryin!! but my wand is broke! like i was telling brandy-have patience spring will be here soon!;) with our luck spring is gone and summer will be hot!!:eek:
i have the temp problems also, i just wish i could hop into a hottub to relax. the pool i’m in for a.t. is 90, just right, after i do my work i get to sit and enjoy the jets for 5 mins. ahhh!!! i wish i could sit on the lower seat, so my neck could get the jets, the lower seat is too low-i can’t get up.:o keep up the great work! you are my hero!!
hope everyone has a good week!
AnonymousApril 13, 2007 at 8:18 am
What a joke! It snowed 3 out of the 4 days I had ‘spring break’. I had planned on attempting to do some outside walking and see how that went.
Since cold temps make things very uncomfortable for me, I scratched that idea.
I’ve learned to prioritize each day. If I have commitments or am teaching, I usually have to forget about any formal exercise. I hate that, because there is a part of me that knows it is necessary, but I also know I have only so much energy alloted each day.
Finally did some floor exercise yesterday with light weights. Always finishing up with the exercise ball. Maybe once school is out for the summer I’ll be able to get back into a routine. Just can’t seem to pull it off now.
Hope everyone else is sticking with the exercise, no matter how much or how little it is.
AnonymousApril 13, 2007 at 9:48 pm
JayDee I agree totally with you this is not a competetion. This is a new lifestyle we are customizing for ourselves. Your doing a great job and the weather will get better. I consider my lazy days of exercise the days I do the circuit of machines and the treadmill and some of the other machines not in the circuit with the personal trainer. The days I do the Yoga or go in the pool are my favorite but I hate to come out of the water and it is not because of my pokadot bikini. It is the fight with gravity that makes me look like a snail coming out of the water. In the water it is SO VERY easy to over do it and then have to take a nap after class. I am very good about pacing myself but have to keep checking my exercise for the week that I do some in the water and some exercise on land. 1 to 3 inches of snow expected here starting Sunday Night….watch out in NYC I think it is heading your direction.
JayDee have you seen the video walking the pounds off…that is a nice video to walk to indoors. All done in place and is by Leslie Sansone. I use that one if I can not get to the treadmill or the weather is YUCKY!
AnonymousApril 14, 2007 at 12:02 am
Happy Spring!:D are we having fun yet?! another week of aqua therapy down, and i’m still able to move-thanks to daily naps and not doing much else.:rolleyes: Hope everyone is getting enough rest and not over doing it. Have a great weekend! kit you never know the snow might miss ya this weekend.;)
AnonymousApril 15, 2007 at 11:29 am
Kit, thanks for the video idea. I’ll check it out. Just hope it isn’t true to the title Walking the Pounds off. That’s the last thing I need. Trying to get back some muscle tone and am constantly reminded by family that a few extra pounds would help.
It’s Sunday, the sun is shining and all sorts of feathered freinds are outside my window enjoying the treats I left for them yesterday. Has the makings of a good day. Hope you all avoided that last snow. Enough, already!
Back to school tomorrow. Working with my little ‘curtain climbers’ in the gym should get me back on track.
Enjoy the day,
AnonymousApril 26, 2007 at 3:03 pm
I finally have transportation worked out so that I was able to start PT again. Yesterday was my first day for exercises, mostly just stretching exercises for the legs and boy, today they ache every time I move them. Should I just work with this as something to be expected, or does the aching mean the therapist expected too much of me. I have had alot of stress to deal with for the last six months, which took a toll on me by taking away my motivation, so I am kinda like a person who spend six months in bed and is now trying to re-build muscle strength. THUS, ACHING AND CRAMPED MUSCLES.
AnonymousApril 26, 2007 at 9:01 pm
I think it is a combo of things. Probably the therapist expected too much and can adjust your program to work with your abilities now. Giving you a challenge but making sure it is not doing more than your body can handle. If it was pain I would say tell them immediately. But since it is an ache that is just the muscle complaining that it had to work. Meantion it to the PT and they can give you more stretches and movement to the surrounding area to loosen things up. Ask if they suggest a warm compress on that muscle. Also make sure they do warm up and cool down exercises to get all the muscles ready for a work out and get all the toxins released out of the muscles too!
I am glad you are back to posting and back to exercising! Listen to your body!
AnonymousApril 26, 2007 at 11:41 pm
I know that it is definately the muscles that are TRYING to work now, it is not pain. A “couch potato” or a person who was never physically fit, knows the difference.
I know that I will always be semi dependent on a wheelchair, but I have three goals that I want to work towards.
1. find out if I am strong enought to get up off the floor. Now that I am back to PT, I can try that in a safe place.
2. I want to be able to walk about ten feet with a cane.
3. I want to find out if I can get out of the back seat of a car. PT therapist can show me how to do it.
If I can do these three things, more INDEPENDENCE will open up to me.
AnonymousApril 26, 2007 at 11:50 pm
Liz I hear ya! Just a little independance can go a long way! I hope you end up with more than you wished for! I love your photo! Keep up the good work! One thing about rehab they will not let you get ahead of yourself. They have a program and they make sure you are able to move on to the next level and not a minute too soon! Be patient!
I am still going to exercise a few days a week on the machines and a few days a week in the pool. Both take care of things that the other exercises can not do. I am getting better slowly! Trying to be patient! I have to admit that from the beginning of the year I have noticed I am doing much better than I expected. There for a while things were moving slowly and now since my strenght is building up I am doing better!
AnonymousApril 27, 2007 at 1:11 am
kit, that is great that you are doing soo well. keep it up girl!
liz, it sounds like you are well aware of what your body is telling you, go with your gut feelings and you will be walking farther then you know. great job, liz!
i had to cancel my aqua therapy for this week-and man do i miss the nice warm water! i can’t wait to get back into my routine next week. this event has set me back even farther then i have been in the past. it has affected my hands, tongue, legs, hips and my core. any thoughts on how to get my digestive system up and running properly again? i have lost 5 pounds since monday-not that i’m complaining, and my taste and smell is gone, along with my feelings in my stomach-i can’t tell when i’m hungry. great on the waist!
neurontin is doing ok, but it doesn’t touch the new pain that this event has brought on. man i can’t wait til tues a.m.-warm water and jets afterwards…ahhh!!!
hope everyone has a great friday!:)
AnonymousApril 27, 2007 at 1:07 pm
Cheryl, I have that same problem of not having the sensation of being hungry and weight loss. So I eat when I would normally have eaten but the appetite just isn’t there. This might be a reason for your digestive system slowing down. Exercise always helps that, but when you can’t exercise enough…what to do.
There is a medication, I think it is spelled Mirilax, that used to be prescription and is now ‘over the counter’. It works for me. Good luck.
AnonymousMay 2, 2007 at 9:53 am
Well, i got to go back to my aqua therapy yesterday, AAAAHHHHH!!!! it proved to be an interesting experience for me, as soon as i tried to walk i noticed i was walking like a drunk in water. the waves, felt like Big Waves to my body< actually just ripples, had more control of me then i had. i know i'm still alittle weak from last weeks event, but it didn't really hit me until those ripples showed me.:o my core muscles are like non existant, it felt like i was up against one of those water canons when the jets came on. even with me holding on to the rope on one side and the seat next to me and the step up on the bottom of the pool, i had a heck of a time sitting still. and i was actually counting down the time to shut the jets off, and my pt wanted me to go another 5 mins---NOT! i can't wait to get my control back, only 1 month before we open our pool, i'll need all the muscles in working order so i can swim with my kids.:) Hope everyone is doing good, and have a Good Hump Day!:D
AnonymousMay 2, 2007 at 11:57 pm
Hello Cheryl, before I talk about me, I just thought I’d mention that when I went to the symposium in Phoenix, the panel of doctors all said that pool therapy was the best for us.
I have gone to PT for the third time now and the therapist was surprised and pleased with what I could do when I did some walking with the walker. I think she thought that I’d only be able to do mat exercises because I wasn’t able to do anymore then transfer myself. The swelling is down again in my feet and if I can keep them like this, I’m better able to move forward and I think I’m getting my motivation back. This clinic has a pool, but it’s a very very small one, like a kiddie pool, so I don’t think I’ll try it. I need the exercising and the workout machines alot more.
More next week. GAD, I’ll be at physical therapy on my birthday.
AnonymousMay 21, 2007 at 11:54 am
I accidentally found this thread and wanted to add my two cents worth.
For the past month and a half, I have been riding my stationary bicycle at home. I started out with 2 minutes, up to 5, etc. Now I do at least 15 minutes 2-3 times a week and I feel so much better. Even with this mild amount of exercise, I have more energy in general and get more movement in through the day that I think would qualify as at least being a fairly active person.
I do have problems with addiction to being a mouse potato. I can sit on the computer for hours and play card games, etc. It is a nice place for my mind to go and unfortunately my butt follows too.
This thread is inspiring and I’ll try to post again soon!
AnonymousMay 21, 2007 at 2:31 pm
My just-turned 12 year old daughter has been doing Aquatic Therapy for 7 weeks now. Started 1 hour/week. At beginning really was too much; she would start falling asleep the moment we were out of the water, passing out almost. Like the way a very young toddler is when they fall asleep: just out!
But as time went on, her bounce-back time lessened and her stamina increased. We joined a pool and go hang out/play/do a tiny bit of therapy on our own about 2x a week. It’s a leisure pool (there’s a separate lap pool) and they keep it a little warmer than the lap pool. Which is good, she’s very sensitive to cold.
Today her therapist was blown away at her progress. When she began therapy, she had to use the lift to get in the pool, and now has progressed to going down the stairs, without a whole lot of help, once we are past the first couple steps. Her hip strength/core strength has improved so much. I really hope she will soon be steady and strong enough to take some steps without her walker. I was starting to get really worried but now it looks like that might happen in the forseeable future. I do think Aquatic therapy is the best, at least it has really helped her.
We will be doing on our own for a while due to insurance, but can schedule check-in sessions as she improves. It is much more fun and satifying than dry-land therapy, at least for her.
AnonymousMay 21, 2007 at 11:43 pm
I am glad you are listening to her body. To start out an hour is alot. They started me out for 20 to 30 minutes in a heated rehab pool (94 degrees) Like walking you have to remember to walk only a short distance because you have to turn around and come back! When your muscles are weak it is nice to have the pool to support your body. That takes the fear out of falling and just the current and waves pushing at your body it works the tiny mucles and increases balance. The exercises will work the larger muscle groups. Coming out of the pool is the hardest. As the water drains out of your bathing suit the heaviness of gravity takes hold on your body and feels like you weight three times as much as you did going into the pool. I take those steps very slowly and listen to my body to determine if I have stayed in the pool too long that day, since each day is different. Remember rest is when the nerves are healing so sleeping is necessary. LOTS of REST! The exercise and activity will condition the muscles. Her nerves are leaking energy so you have to also take that loss in account along with the exercise. I think because she loves the water that is a great asset and with her attitude she will do great! Just don’t over do anything. That is what works against her recovery. AS she exercises she will regain her range of motion, stretches are easier in the warmer water and balance comes with stronger muscles. Stamina will come after all that. Make sure she is also doing the other exercises while in bed to make those muscles work a little harder under gravity. All good routine will consist of land and water. Also try Yoga where you need to hold a position that is good for a body too. Also helps with breathing control like the water work does.
AnonymousMay 22, 2007 at 8:54 am
When you say her nerves are leaking energy, do you mean all the energy her body is expending in healing? Or do you mean something else? Just curious.
Also, if you have any ideas on specific yoga poses for someone who cannot stand (without walker/someone to hold on to) that would be great. If you have names of poses I can research them (or call some yoga-savvy friends in to show me). Most of the poses I personally know are standing/balance/strength poses. Sometimes I have her get in the ‘child’s pose’ to stretch out her back and to relax.
We do dry-land therapy 2x a day at home (1x on pool days), consisting of various leg movements and assisted leg movements (for more range) and stretches. But it is rather dull and some yoga might help break it up, and also help with keeping calm and relaxed through breathing.
I love this thread, it is so positive and pro-active. I like that it is focused on what you can do, not what you can’t. That is the attitude we are trying to keep.
AnonymousMay 23, 2007 at 12:15 am
cincymom> From what I have been told the mylin is damaged and letting signals or energy escape out into the muscles. Like a damages electrical wire with the plastic coating damaged you would get sparks. This is what causes the fatigue is wasting that energy faster than the body can produce more. In the case of damaged nerves the signal does not get there at all. That is why the persons reflexes no longer work. A neuro can do the nerve conduction tests if rehab feels there is a problem.
As far as Yoga it is a very specialized program for each person and their ability you will not be able to do all the movements at first. Which is nice for the person that can just do moves from their bed or the floor or sitting in a chair. All movements are slow and are improved apon as the person’s ability grows. So check the local library or check with your Yoga friends to see if they have a video tape they can lend you. It is just important that you start somewhere. I am sure there are websites with the Yoga positions online too!
I am glad you left us a message! Thank you! I wish we had more that come here and let us know how they are doing. Exercise has to be something you enjoy or you will not continue that in your daily routine.
AnonymousMay 23, 2007 at 1:45 pm
Thank you for your message about exercise.
My son (29) was diagnosed 5 weeks ago (after a 3 week onset) with GBS. His legs are no longer of any use. Walking is very difficult and also his coordination is terrible.
The doctor released him from the hospital after a 3 day monitoring for vitals. They told him go home and contact his primary. No other information given to him.
His primary checked him out and told him to come back in a month to see his progress. Progress? He’s worse. His check up is on the 6th of June. I have been trying to convince him to call and try and get into some type of exercise program to keep his muscles up. I’m not a fan of traditional medicine or medical beliefs. No professional has given him information and/or advise on this syndrome.
I am frustrated for him and worry that there will be permanent damage. He has gone from being extremely active as a construction worker to daily sitting and waiting. There must be something that he can do to aid in his recovery.
The doctors didn’t think it would be a good idea to do the blood stuff. They told him just to wait.
Any info would be greatly appreciated.
AnonymousMay 24, 2007 at 12:10 am
dianevc> Do I understand you correctly that your Son has not received IVIG treatments or Plasma Phersis? Those treatments should be used to stop the progression of the damage. There is no cure for GBS but the damage to the sheath of the nerves can be extreme if not stopped. Was he under the care of a neurologist? Did they run and nerve conduction tests? He was not offered any kind of rehab with the problems he is having? Also a decline can be that more harm is being done to the nerves or he is over doing it and is not resting enough. Rehab comes first and then an exercise program. He should be receiving Occupational and Physical Therapy. Did they do a spinal tap to test the fluid near the spine?
AnonymousMay 24, 2007 at 8:08 am
My daughter was dx with ‘mild GBS’ in early February. After about a week at the hospital, we were sent home with a walker and an appointment 2 weeks later for PT, and a prediction that she would be ‘running around like normal’ in 2-3 weeks. Her problems grew slowly and subtly worse for the first week at home. The walker was a joke. She could use it to get from couch to bathroom, but anything further was impossible (she is a lot better now, but still not walking on her own…).
When pressed, the neurologist said IVIG would possibly cause more problems and that they suspected MG. (She had normal spinal tap, but it was never repeated; I now know that ofter spinals done very early will not show the elevated protein. Hers was done in the ER, about 24 hours after onset. But this led the neuro to question whether it was indeed GBS).
He also said that ‘she will get completely better with or without IVIG, and why would you want to expose her to all the risky side effects.’ The other one was, “we only give IVIG when patients are on a vent” (hers pretty much only affected her legs, though she was very weak overall for a long while). I now know that many others receive IVIG when they are not even as disabled as my daughter was (and is). It is not use only in the direst of situations. But, I believed the doctor as I had no reason then not to.
Well, by the time all was sorted out, and we sought another opinion, and a firm dx of GBS was given, she was past the stage where IVIG will help. I really, really think she should have had it, EARLY, but that is water under the bridge for us now. She is 3.5 months out from onset, and cannot yet walk, but is now improving steadily. I have done some reading and recovery time is typically cut in half with IVIG.
I would IMMEDIATELY begin pushing for another opinion. If it is still progressing, IVIG will likely help.There is a book on Amazon called “Guillain Barre Syndrome”, by Gareth Parry and Joel Steinberg, both esteemed neurologists, and experts on GBS (many doctors, even neurologists, are a little hazy on GBS and its many forms). It will help you in talking to the doctors, and also has lots of good info for you & your son. Also, regarding PT, also ask for a referral NOW. Your primary or neurologist should be able to do this, with a phone call. Try to find a PT who has dealt with GBS before. The main thing is keep his range of motion through simple stretches, retain muscle strength and also to assess things like ‘foot drop’ which my daughter recently got a night brace to prevent. Foot drop can be a permanent problem after GBS if not addressed, and leads to tripping, falling, etc. Until you get a PT appt, I would suggest that he try to switch positions fairly often-vary lying down with sitting with feet flat on floor, sitting on floor with back against wall, legs out in front (stretches hamstrings), lying on his stomach while watching TV or reading–all these will help stretch gently. These were all things our PT suggested. But tell him to listen to his body, DO NOT OVERSTRETCH–only what doesn’t hurt.
Good luck to you and your son! I will be thinking of you.
AnonymousMay 31, 2007 at 9:39 am
Another day at physical therapy and I surprised myself by doing something I haven’t done before. I got on the mat and I got myself into a crawl position and then I raised myself up onto my knees, but boy, could I feel the strain in the muscles of my unworked upper legs, so I didn’t stay like that long. I’ve got to find some exercises I can do at home that will work those muscles in a gently way, maybe stretching? Problem is my bed doesn’t work too well and I can’t get myself up yet if I get on the floor and for any standing exercises at home, I have to hold onto walker.
AnonymousMay 31, 2007 at 9:18 pm
Liz do they have you doing any kind of exercises with a chair. Controled sits into a chair a few times will give those muscles strenght….do that a few times an hour. I pick a few commercials to use for those kinds of exercises. Also sitting in a chair with your walker as a support….raise out of the chair like you are going to stand without pulling up on the walker or pushing off with the arms of the chair if it has them. Push up with your legs from the floor. Slow movements do the best job of making the muscles move. It is not the number of times you do this in a minute but the quality of the movement and making the muscles hold those positions. That is why Yoga is so good for this type of weakness. It is slow and works all muscle groups. I am getting better at getting up off the floor but I still have alot of work to do on my legs, back and hips. I do squats with my back against the wall and slide down to almost a sit and I don’t think you should do that one it does not sound like you are strong enough for that. Make sure you ask your PT to suggest some exercises you can do at home. Do leg lifts in bed and circles with your legs while laying on your side…don’t cross the center and cross our legs, especially if you have a hip replacement. REMEMBER THOSE ARE SLOW CONTROLED CIRLES. Small at first then larger when you feel you have that kind of control.
AnonymousAugust 13, 2007 at 9:16 pm
[B]OH BAD KIT[/B] for letting this slip off the charts! We are back and are serious. Now that I have made some really good progress in less fatigue and strenght and stamina I am going to make sure I up my program to fit my ability. I have not done that very much lately and got lazy in some areas. I worked really hard on all the core muscles to get my abs and back and hips stronger. Those rotating ribs were really bad and keeping me back for many exercises. Now I have not had them rotate at all for about a month. I will go thru my Journal and see what I have dropped and see what I can add to my routine. Let you know soon!
AnonymousAugust 14, 2007 at 10:27 am
Busy weekend coming up so I have decided not to increase the exercise too much but continue to work on range of motion and stretching and try the rest of this week to pay more attention to my body and see where I need more movement, strenght and where I am having any pain or stiffness. Then I am going to work to work those forgotten areas. I have not been working my shoulder for the injury and noticed I have lost some range of motion. So I have put that on my list of areas not to ignore. It is my left arm and I am right handed so I forget to use it and I don’t want to loose it! My left leg is still weaker than the right so I am going to find more things to increase that strenght too. For now I am going to go back to using the rubber therapy bands in bed and in the chair and wake them up again. After this weekend I will put them in boot camp again! I have gained so much this Summer I want to start planning alternatives for when the Northeaster Winter Days set in I have a plan to keep active. What kind of things are you doing for exercise? We can make a list from A to Z to pick from! Don’t beleive me? A = Aerobics or Aqua exercises. B = Basketball or Ballet 😀
AnonymousAugust 15, 2007 at 12:10 pm
[B][COLOR=”Green”]Hey Kit……long time…..for both you and me…….I have been back to work since mid-June and down 50% on my Neurontin. Been doing some jogging in our pool almost everyday and most important of all I’m back to playing guitar again.
I feel so blessed the my GBS was “mild” if there is such a thing.
My computer hard drive crashed and burned about 3 weeks ago and my last large back-up was October 2005. I lost a fair amount of data, but not everything. Lessons to be learned.
Hope everyone is enjoying their summer and it’s good to be back!![/COLOR][/B]
AnonymousSeptember 6, 2007 at 10:35 pm
I just started OT and PT finally!!!!! When I was first diagnosed 5 years ago the insurance I had would not cover any of it so I have really lost some time but in July I got on my spouses insurance and can now get what I need. I was so nervous about exercising at all for fear of doing more damage and not wanting to get more fatigued but now OT and PT is teaching me what my limit is and how much recovery time my body needs. It feels so good to be doing something so concrete and proactive. I am shocked that doing only reps of 10 for about 8 to 10 exercises wipes me out! I mean I used to do one and a half hours of yoga, and massage other people all day only a year ago. Of course because I was overdoing it I disabled myself but I was able to push. But the point is I am learning now how to moderate everything and accept that 15 minutes of exe. a day is good enough for now. Yesterday I did PT, OT and went for a walk with my leg braces and today was wiped! Of course getting menstral cramps exaserbated everything so I did not do anything today. But tomorrow I have PT again so I am not discouraged. It is great to be getting into a steady routine and getting help with it. And I so appreciate a group like this to check in with. Thank you so much. By the way, when I asked my PT therapist what he thought about aqua therapy he was less than enthusiastic which made me dubious of him because I know when I did some water therapy this past winter I felt much better. I just thought it was interesting that you all seem to get great benefit from it. I guess it goes to show that we are our own true experts.
AnonymousSeptember 6, 2007 at 10:53 pm
Linda I think they dislike the work in the pool when they do not have a pool. It is a big part of the facility I go to. They start you off on the beds where you left off when you were in the hospital and go slowly from there. They try to get you strong enough to move around in your home and get you working with gravity. It is a work out that will need to be geared to your individual ability. They do push but let you work at home too. When they put you in the water they usually do require a routine on the machines or mats to keep you working with gravity. Being in the pool is much easier because of the weightlessness. It was easier for me to get worn out in the pool because I was enjoying myself and did not pay attention. Good think they had an eye on me! Coming up the steps out of the pool was always a struggle fighting gravity and getting my sea legs back under me! Now I still prefer the pool, so I make myself work out on the mats and take Yoga and some other on land programs. I am slowly getting better and see a difference each month or two. But I continue to get better! Glad to see everyone posting! Nice time to get back on a schedule now that Summer is coming to an end.
AnonymousSeptember 6, 2007 at 11:04 pm
Rick that is great news! I am glad you are able to pick up that guitar. Always nice to see someone return to something they enjoy! I appreciated every thing I was able to return to even more! it is not an easy journey and you have to plan and work and try again till you get to that goal. Each little goal adds up like pennies in a bank. We have to just save up each step till we can make it to the top of the mountain.
When I started up my computer it was making all kind of noise. I think it is going to leave me stranded. I keep trying to save stuff but I forget to save changes to files. I usually loose alot of data too! I don’t think I will ever learn!
Glad you are back! Post offen! Exercise regularly! Save those pennies for a new guitar book!
AnonymousSeptember 7, 2007 at 4:14 pm
Went to OT again today. Was way stronger than two days ago. So she stepped things up. And gave me a device to take home to work on my hands. I love it! Its like getting a new toy! So if I feel ok tom. then I can do my 3 sets of 10 tomorrow. Hopefully this upward trend will continue. How’s everyone else?
AnonymousSeptember 9, 2007 at 11:00 pm
Major relapse after that last session. I slept all day Sat and Sun and was in a lot of pain in my hands and arms. I can’t believe it. Just that small amount of increased action sent me into a relapse. I see my OT therapist tomorrow so we will see. Hope everyone else is doing ok.
AnonymousOctober 2, 2007 at 12:39 pm
I had to drop out for awhile because dealing with three (maybe four) chronic dis-orders sometimes gains control of me; Chronic syndrome (severe CIDP and maybe CMT), chronic fatigue both triggered by chronic STRESS. Now that my stress has dropped down, motivation and the physical feeling of HOPE are back. EXERCISING is VITAL to me for more of a recovery and to re-build muscle strength. I am trying to set up an exercise routine, but I need to add about two more things. For me (wheelchair user), I can only stay on my feet and stand when holding onto something sturdy. And I cannot lay on the floor, I cannot get myself up.
1. I do squats, but have to be careful I don’t go down too far. How many should I do.
2. I do side kicks and back kicks, How many should I do.
3. I do marching steps, how long should I do? 1 minute or 2?
4. I do side stepping walks back and forth (I have exercise bar). How many times is good?
What else can I add?
AnonymousOctober 2, 2007 at 11:17 pm
Glad you’re back. Did you get physical therapy before and is that where you got your routine? From the very little that I have gotten I was told to do as many reps as I could do and if the next time I do the exercise and can’t do as many then I should decrease the reps. until I feel stronger. Does that make sense? I wonder too if you could add some core strengtheners. If you are able to get yourself on an exercise ball those things are really great at achieving many differant kinds of goals. Like just draping your body over the ball and trying to lift your legs one at a timeoff the floor helps strengthen the back. Or just sitting on it and rocking strengthens the stomache. I hope these suggestions help. Keep up the great work Liz.
AnonymousOctober 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]
AnonymousOctober 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!
AnonymousOctober 25, 2007 at 6:49 pm
When this thread was first started I was really being faithful to the routine suggested by my PT. Got hit with some strong residuals and although they seem to be not as bad if I do nothing…I can’t seem to get going again. Am no longer in therapy. I know what I should be doing, but whenever I try to do a minimal amount of walking I am exhausted.
My primary care doc, who I really liked, has moved out of state and I am not seeing a neurologist regularly. Tired all the time, and working only 3 days a week. All I want to do is lay down when I’m not working.
Just need to get pumped up about starting a routine, but it hurts!
Kit, you are so faithful to this thread, always offering encouragement when I am sure you need it yourself. I keep checking in to see if something will inspire me or get me going again. I’m just not sure I can do it anymore.
Keep up the good and encouraging work.
October 25, 2007 at 9:36 pm
Do you think tight hamstrings could be the culprit in what keeps Kevin from not being able to run that fast? Do you think daily stretching might help that issue?
Dawn Kevies mom
AnonymousOctober 26, 2007 at 8:08 am
Kevin’s mom, I teach grade school physical education. We always start our classes with a series of stretching exercises. The boys all tend to be rather tight in seated leg stretches, mostly because how they are built. Kevin may vary well need to stretch out the back of the legs but may need strength exercies to get all the major leg muscles in action.
Start with sitting on the floor, legs out straight, toes up, and reaching toward the toes. 3 times reaching forward toward the toes and 3 to 5 sets may be enough to get started.
I don’t know what level Kevin is at physically, but would be glad to suggest some simple strength training for his legs. Feel free to send a private message if you want.
I may not be able to do the exercises myself, but I have many years behind me in exercise training.
Slow but sure…
Hope it helps Kevin.
AnonymousOctober 27, 2007 at 7:58 pm
Thanks for asking about my hand toy. I have not been checking in lately but I am happy to get back on track. On Sept. 14 I had to go to the hospital with a terrible virus that rendered me unable to do anything. I had to stop doing home therapy and in OT return to the basics to get my strength back in my hands and arms. I am happy to report that I am finally gaining and am almost back to my original strength after 3x’s a week at OT. I think this coming week I will be able to go back to my toy. I will try and take a picture of it and post it. Yours sounds cool too. I have to say that getting regular upper body work has been a tremendous help. Not only phyisically but mentally. For some reason, having structure, someone to help me think about this whole thing, and being able to concretely see progress has made a huge differance in my whole way of dealing. I really struck gold with this particular therapist but have not been as lucky with physical therapy which I really need as my lower trunk is my big problem, but I am taking concepts that I learn in OT and apply it to my legs and feet and hips. I see such a gap in services for this whole disease. It really seems to be a matter of hit or miss in terms of getting good therapy from what I have heard from people on this forum and from miy own experience. If I had gotten help like this 5 years ago I cant imagine what could have been avoided. But no looking back, only forward.
Dawn, if your reading, I think working on hamstrings is essential as well as the achilles tendon. My doctors constantly emphasize keeping these stretched because our tendons shorten and cause difficulty in keeping the foot up. So gentle stretching daily is a great idea. Kit is right when she says a little at a time though. I am learning how important it is to pace. Rest in between reps and even if I have strength to do more, I need to keep in mind the delayed effects. We have to allow repair time. I finally am getting it.
JayDee, I know the feeling of lethargy, fear of pain and set back and just plain old dont want to do it. I stopped doing anything and never thought hand exercises would be considered a “workout”. But it is something and that small amount of work has inspired me to start doing more full body. My therapist has suggested Tai chi for endurance and balance as it is gentle and non resistive and yesterday she suggested a stationary bike for more cardio. as this is less strenuous for the legs which is my struggle. I hope this gives you some encouragement. Sorry to go on so long everyone. Thanks for this group and stay in touch.
AnonymousOctober 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!
AnonymousNovember 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! 😀
AnonymousDecember 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.
AnonymousDecember 26, 2007 at 6:13 pm
Hi LadyKit and others on this thread
While I was at the Y today on the elliptic trainer, I got this brainstrom idea to start a thread about exercising. But first I decided to check to see if there already is one. That’s what brought me thankfully to this thread.
I was diagnosed in about September with IgM MGUS variant of CIDP. From reading the situations of others, I have been lucky so far because it is slow whereas the GBS can be so fast moving. However, MGUS is unfortunately a chronic disease so it will continue to get worse, unless if the Rituxan treatments I am taking will work (I sure hope).
Anyway, until this thing came along, I was a runner and did over a hundred marathons. This year I sadly had to give up running. I tried to do 5 km last week but suffered for three days after.
I believe very strongly in getting some cardiovascular exercise, three times per week for 30 minutes or more to keep the heart in good condition. Like you say, you need to listen to your body to know how fast and hard to go. But the main thing is to keep doing something.
My daughter is a Moksha yoga instructor and coincidentally today she was talking about Qigong as a potentially beneficial exercise. She was saying that Tai Chi involves the martial arts but that the Qigong is strictly for medicinal purposes and in fact her studio gives Qigong lessons free.
So I may go for a class in Qipong sometime soon. Maybe the Moksha yoga will help too because of the balancing aspect involved.
Otherwise, I printed out some exercises I found on the Internet for people with CIDP and intend to start doing them.
I’ll watch this thread, now that I found it, to see how you are all doing with the exercises. In fact, I admittedly need to really get going with the excercises after all the good food at this time of year. Without the running I’ve gained a lot of weight.
New Years resolutions?????
Lets stay fit!
AnonymousDecember 27, 2007 at 7:05 am
Good morning Linda
I feel a bit embarassed this morning because as I look at the exercsees I mentioned, I realize that they are for Charcot Marie Tooth disease, which is what I thought I had at one point during tests. Nevertheless, some of the symptoms of Charcot Marie Tooth are quite similar, so maybe the exercises would be of benefit for GBS/CIDP. You can find them at an Australian web site for CMT: [COLOR=”Blue”]http://www.ebility.com/cmtaa/physio.php [/COLOR]
There is a link to download them.
Moksha yoga is a form of hot yoga where the room is at 100 deg F and you really get a good sweat and cleansing of the pores while getting the usual benefits of yoga. There are other hot yogas but according to my daughter, some are very rigid whereas the Moksha yoga is more in tune with what the participants are capable of doing. Also, because of the actual physical construction and outfitting of the rooms, there is much less chance of bacteria build-up. For me, being on Rituxan, the cleanliness alone is enough to convince me.
I have yet to really build a good exercise program for myself because this year has been so hectic. What with travels (my job), this gradual worsening of motor skills in feet and hands, medical tests, now infusions, etc. I am only now getting to the point where I know my baseline and feel like I can develop a program. I am also looking at taking a balance clinic (recommendation of the physiatrist) and maybe they will have some good suggestions which I will happily pass along. No date yet for that clinic – I am waiting to hear from them.
There won’t be any exercise for me today though…I have my fourth Rituxan infusion in a couple of hours.
Have a good day and stay fit.
AnonymousDecember 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.
AnonymousJanuary 9, 2008 at 3:40 pm
Hi Cincycat1 and others on the excercise thread,
We were thinking of getting some GBS/CIDP forum members to sign up to walk/run the Cincinatti Flying Pig 1/2 Marathon on May 4th. It could be a fundraiser for one thing, and the Foundation sent me a contact name and number which I will call when I get back home from the business trip I am now on. But otherwise it would be a good goal for those that think they might be able to accomplish it, and what better place to talk about it than here on the exercise thread. Right now my family and some friends have also said they want to attend. It should be a good time, as long as they have the patience to wait until I finish!!
Any enthusiastic fellow walkers/runners who want to join in?
We can beat this thing
AnonymousJanuary 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.
AnonymousJanuary 11, 2008 at 5:54 pm
Interesting article in the International Herald Tribune yesterday on balance. It was not specifically directed at people with peripheral neuropathy, but it struck me as something that could be useful.
Here is the link:
I cut it out of the paper too so if you cannot get it from the link, let me know and I’ll scan it and send.
AnonymousJanuary 15, 2008 at 5:50 pm
Well MJ and friends…I am having some second thoughts about signing up to walk the half marathon in cincinatti in May. If anything, despite some training, my situation seems to be getting worse instead of better. I can’t imagine how I would get out and do 20 km on a Saturday morning training walk/run when 4 km right now is difficult. I think I will wait a couple more weeks before signing up to see if things get better. This old body just doesn’t respond like it used to.
PS. I am getting into an exercise routine now and keeping a log. So far, so good (5 times so far this year – need to average 3 per week).
AnonymousJanuary 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.
AnonymousJanuary 17, 2008 at 10:48 am
Everyone on the forum seems to recommend going at your own pace and getting lots of rest and not overdoing it. I am coming to believe that this is certainly good advice.
As Doris Day (or someone) used to say, “What a difference a day makes”
I had an excellent work-out this morning. LadyKITUSA…I highly recommend that if you get a chance, you try a work-out on the elliptic trainer. In case you have not seen one, check the precor website at [url]www.precor.com[/url] and click on elliptical trainers. There are other manufacturers too, but Precor seems to be the Cadillac. Anyway, they are fantastic for us because there is no pounding and you can go at whatever pace and resistance you select. I find them to be way easier than walking or running, and yet I can burn 500 calories in about 40 minutes and get my heart rate right up to 150 (maximum for me is 160) with average 130 (recommended range 120-140). So it is perfect for me.
And…CinciCat1…have you signed for Flying Pig Half yet? My disappointment of two days ago may be changing. I think I will get on the treadmill this weekend and see how far I can walk. What are you up to now in distance?
Have a wonderful day everyone and take care of your bodies, despite the nasty trick they have played on us vis-a-vis immuno-system.
AnonymousJanuary 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!
AnonymousJanuary 18, 2008 at 1:33 pm
You are an amazing person. Probably if you had not had GBS, you would be one of those people at the health club that no one can keep up to! I salute you for all the exercises you do now after the problems you’ve had associated with GBS. I guess that I am slowly gaining an appreciation for what the GBS forum members have gone through.
With the CIDP, the problems I have experienced have been far less traumatic, although this is certainly not the case with all CIDP’ers. Mine is a type that is gradual and relentless but painless. I am at the stage where I can still walk (without cane) and drive, but the numbness is working its way up my legs into the calves. It is accompanied by weakness, so I can’t run anymore and I notice things like walking uphill or stairs. Running is no longer viable, and it usually results in aches and pains the next couple of days.
But apart from that, I can still use the exercise machines like the recumbent bicycle you mentioned or the elliptic trainer. I just set them at a comfortable resistance level and I go at my own pace. After 27 years of running, it does not feel normal if I don’t get the old ticker pumping at a higher rate a couple times a week.
Swimming is rated as an excellent means of exercise. One just has to get used to breathing in when the head is above water!…and not talking when the head is under water!
You sound like you have adapted and fit into a groove that is right for you. That is a lesson to us all. Go easy but be sure to do something – in accordance with what your capabilities are.
Oh…one other thing…after giving up running and eating too much over the holidays, I have to exercise to shed a few pounds. Yesterday I did the BMI calculation and found that I am now in the “overweight/obese” category. Not good.
Have a good weekend and keep up the excellent self discipline. And keep enjoying it!
Regarding the Cinci Flying Pig 1/2…I used the treadmill this morning and found that it takes me about 17 minutes to do a mile. That means that the 1/2 marathon would take almost 4 hours. Ouch. Still not sure whether to sign up.
AnonymousFebruary 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!
AnonymousMarch 18, 2008 at 9:00 pm
Sorry for the absense from this thread. I’ve been active on the threads concerning Rituxan treatment, etc. But I have not made the kind of progress in fitness which I had dreamed about a few months ago when we were more active on this thread.
I’ve been going to the Y occasionally to use the eliptic trainer, but I must admit that it has been kind of sporadic. And I have lost a small amount of weight but not enough. I feel good when I start to walk, but if it is any long distance, I seem to fade.
So, I have to say that it is very doubtful that I will be able to register for the Flying Pig Half Marathon this year.
How are you making out? Are you still thinking about walking the Half?
I will be taking another three doses of Rituxan over a three month period soon and I hope that helps to generate some improvements.
Keep up the exercise and stay fit.
AnonymousOctober 27, 2008 at 3:45 pm
Hi Gabrielle and other excercisers!! I thought it might be good to post again on this thread started by Kit (LadyKitUSA), after it has been dormant for quite a while.
What gave me the idea to do so was a message from Gabrielle on a different thread: [QUOTE] [COLOR=”Blue”]I am still biking, although less than I would like, but at least it is something! I think i have done 1200 miles on the bike, but a lot of that was in the beginning, and some of it was being pulled by my friend when I pooped out!!! Talk about lazy …Gabrielle[/COLOR][/QUOTE]
Gabrielle, that is amazing. 1200 miles on a bicycle. I went on a bike trip in September and we did about 300 miles which seemed like a lot. Cycling is fairly new to me but it is a really enjoyable sport. The only problem is the impossibility of feeling comfortable on a bicycle seat for that length of time!!
Things have been improving this year – I’ve been able to do about 180 km running so far and I’ve averaged about 2-1/2 days a week of exercises. That should be 3 days a week minimum, so there is room for improvement. Also, I have to shed a few pounds that I’ve gained in recent years.
Anyway, winter is coming and it will be harder to get out and stay fit…so we need to encourage each other to keep up the fitness efforts.
Welcome any success stories and advice.
Stay active – stay fit. 😉
AnonymousOctober 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?
AnonymousNovember 7, 2008 at 4:34 am
This thread is a great idea Kit!. This morning I woke up feeling very lazy, had a bad night sleep so I already feel a bit tired. After reading your posts, I decided to go 1 hour to the gym, I know it’ll do me good, I will sleep better and feel better . I’ve known this for a while, but some days I lack the motivation, especially now with the winter weather. So far I’ve been doing a lot of yoga, aqua aerobics and some weight lifting and aerobic classes. Yoga has helped me a lot through this difficult period of recovery but I like to do the other classes as well to improve my stamina and strenght.
AnonymousNovember 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! 😀
AnonymousNovember 10, 2008 at 4:27 am
I wanted to tell you that yesterday I tried meditation for the first time and it was very good, it was very relaxing and I slept better last night. I meditated using a cd I downloaded for free on the internet on
( I read a post on the website butyoudontlook sick by somebody who said it helped with their illness)
Even though I’ve been doing yoga for a while I always found it difficult to relax and let go of my worries/thoughts. It’s only the beginning, but I’ve had such a positive experience that I think this meditation thing is gonna help with the recovery and with my mind in general.
I also got a book from the library called How Meditation Heals by Eric Harrison, where he suggests meditating on particular spots of your body that are ill. The state that you reach when meditating promotes healing. If anybody is interested I can write the instructions on how to meditate on illness. It’s very simple and it takes practice, but I felt better just doing it for the first time.
Off course I’m gonna continue the physical exercise, but I think that meditation complements it nicely, it is exercise for the mind I suppose.
Have a good day everybody.
AnonymousNovember 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
AnonymousNovember 10, 2008 at 6:44 pm
Hi Kit and everybody in the exercise program!
I was practicing at the race site for the World Sprint Championships in Hawaiian outrigger canoe racing when my hands started tingling really bad. So I went down hard with GBS starting this last August 4th. Totally paralyzed, eyes taped shut and on ventilator. Heart was even skipping beats.
I went from 190 to about 155 pounds and couldn’t do more than 5 pound weights in the critical care facility. I was released from the rehab facility on September 12 and used two canes to get out. I was planning on tunneling across the street if they didn’t let me out soon, but there’s a tatoo parlor and a taxidermist across the street so I didn’t like my chances there….
So I started going back to the gym right away to get that weight and strength back. I found I was at about one tenth of my previous weight settings. I also walked as quickly as I could through the pool and that felt really good.
I took the canes to a convalecent hospital on 9/21 and haven’t looked back since. I’ve been back to work since 10/13. I had 5 treatments of IVIG which didn’t do anything for me, but I started moving things again after my first plasma treatment and it really came back fast from there. Could there be a benefit of having both treatments? Maybe it’s in the genes? My Mom still lives alone and works part time — she’ll be 97 on the 16th! She fell and broke her hip earlier this year and had the surgery — she’s back to normal already!
Anyway, I am now at the 50% level for all of my weight settings except leg presses and I still find it hard to squat — really painful. My arms were completely paralyzed as was everything else, but no pain in my arms now at all. I was going to start running recently, but the bottoms of my feet are still sore. I have started paddling in outrigger canoes though. I’m up to about 4 miles. Sounds like a lot, but it’s not at all.
So my goal is to get back in shape before the next racing season which is around the end of April. Ultimately, I would like to get back in shape enough to do the Molokai Hoe again. 41 miles across the Molokai Channel from the island of Molokai to Waikiki on Oahu through the most violent water on the planet. Really fun. So we’ll see and I’ll keep you posted!
AnonymousNovember 10, 2008 at 8:37 pm
You have come a long way in such a short time. Mabe it’s in the genes?
I think it’s in your genes to have a long life if you take after your mom. 😀 It is great that she still lives alone and works at her age.
looking forward to your outrigger canoe race next April.
Good luck to you
AnonymousNovember 11, 2008 at 3:20 pm
Yeah, she still has all of her teeth! I can’t even say that anymore! It’s absolutely amazing to talk to somebody who can vividly remember cars being a novelty. She was a nurse at Pearl Harbor when it was attacked and married my Dad when he came out as a pilot in the Pacific arena. They moved to China after the war and he flew for the Flying Tigers. Her friends now call her Mrs. (Indiana) Jones because she carried a sidearm all throughout China as a nurse. She started treating Chinese Nationals and they would give her Chinese antiquities in payment. We moved here on the mainland for a short time when I was a kid and she donated a huge amount of stuff to the UCLA Museum of Asiatic Arts.
I know this has nothing to do with GBS, but as you can see I’m pretty proud of her!:D
AnonymousNovember 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!
AnonymousNovember 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.
AnonymousNovember 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.
AnonymousNovember 12, 2008 at 8:59 pm
Thanks LadyKIT USA,
I know I have recovered abnormally fast and I am mindful and really thankful of it. I’m down to absolute nuissance things now and I have to remember to stop crying in my beer when I think of all the wonderful people here on the forum who haven’t been as fortunate as me. I can’t wait to get called to be a GBS coach so I can start paying it forward!
And you never, ever give up. Ever. I sent a thread out recently with a cartoon of a bird trying to eat a frog, but the frog has reached out of the birds mouth and is strangling the bird. I first saw that cartoon, hand drawn in pencil, over the door of my first Escape and Evade class when I joined the Air Force’s 1st Special Operations Wing in 1973. It’s been my mantra ever since. When I first crashed with GBS the doctors said not to fight it because “you’re going for the ride whether you like it or not”. I said, “Phhhht, #$&* that, this is not going to keep me down if I can help it”. I had just been transferred to the Acute Care Clinic out of ICU around Labor Day. The PT people started me on Theraband exercises and left for the weekend. Since it was a three day weekend I didn’t see them until Tuesday. When they asked me how many I did all I could say was, “I don’t know I lost track after 3,000…”:o
So yeah, don’t give up, don’t let up….I wasn’t a ground pounder, but the Army has it right when they say, “Be all you can be.”
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