???? Foot Drop, AFO’s, AND Lack of Balance

Hi Vicki,
I know its hard to stay positive. It’s ok to not always be. Living with a chronic condition is sometimes depressing. One day at a time is my motto. I have CIDP with foot drop involvement. Just got AFOs this past summer and still getting used to them. I was told to not wear them during exercise or be very careful as they could break if bent in the wrong direction. Balance is affected because our proprioceptors are off. And because we don’t have the sensation to feel where we are. Balance is a combination of such finely tuned functions and having just one thing off can alter balance. Sorry if this doesn’t make sense. Maybe someone with better technical vocabulary will explain it better. Just know you are not alone and doing the best you can is enough. Be gentle with yourself.
Be well,
Linda

The problem I have with my balance is a combination of things. Sight or periphal vision had to improve greatly. Muscle strenght had to improve which takes time to get everything back the way it was to give us better balance. Abs have to be strong to support the back and core has to be well developed to support the upper body and lower body movements. Ears can be effected and any change in hearing can cause balance problems. Water not draining out of the inner ear can also throw it off. I am guessing but you are not too far out of GBS and still using the AFO I would say that with more exercise and building confidence you will bring your body up to par to do more and more. If you exercise or do yoga you need to take off the braces and any support hose and wear clothes that fit loosely. Any twist of the clothes can be enough to keep our weakened bodies from moving. No use making the muscles try to move clothing and our bodies. Don’t use weights to add any kind of resistance either. Make it possible for your body to get back to working properly and be patient and give it any advantage you can before adding any restrictions. Do what you can at your level and listen to your body. Have you also tried using a stability ball or balance ball you sit on and exercise on it really helps with balance and doing exercise in the water while the water adds some resistance it also makes your body always reposition its self to keep your balance. Waves are a good thing in the exercise or rehab pools just keep your mouth closed! Walking is one of the best exercises and if you are able do a slow dance routine to your favorite song. Side steps or lifting your leg as you hold on to the wall are good too. They will strenghten your hips, back and legs. Also talk to your doctors or your PT they can give you other ideas according to your level. I first started out doing the Hokey Pokey slowly as I sang to myself. I would laugh and that with the singing increased my breathing. I know how frustrating it is but be patient!

Hello Vicki,

Reading your post has really brought back memories that I have when struggling with the residuals of a very severe case of GBS over 21 years ago. I am going to try to let you know how I was able to deal with some of the problems you have mentioned. My “night boots” consisted of a pair of high top tennis shoes with the toes cut out of them. I wore them during my whole time in the hospital. When I got out of the hospital I gradually taught myself to get along without them even though it was very painful to do so due to the fact that my feet were so sensitive to touch. I taught myself to sleep on my side so my ankles would not ache as much from the foot drop and the sheets did not touch my toes as much. You might try it. I wore AFO’s for many years and after having worn out 2 pairs of shoes and 3 pair’s sets of AFO’s I finally decided not to use them anymore. I felt that they were not allowing me to build strength in my ankles. They hindered me in many ways when it came to just ordinary daily activities. I started taking them off for short periods of time until I finally stopped wearing them completely and now use an 8” lace up boot for support. This all occurred after over 3 years of therapy with very little results as far as strength goes. I honestly feel that I started improving when I got away from those cumbersome AFO’s. The same goes for the wheel chair and walker I was using. Normal daily activities helped me improve quicker than any therapy ever did. I still have foot drop, very weak ankles, and terrible bad balance. Standing in one spot is pure torture for me so I’ve learned not to get in a position where I have to stand alone without support. Just touching a wall or any stationary object gives me better control of my balance. If I think I will be going to a place where I will have to stand alone I use a cane. This helps some, but with hands with very weak thumb strength I avoid using a cane as much as possible too, since hanging onto it can be a chore in itself.

I guess what I am trying to tell you, is that even if you do not improve anymore, you have got to learn to adapt to what you do have. Sorry if I have not sugar coated this response, but after over 21 years of dealing with the residuals of GBS I have accepted the fact that not all GBSers get back to a completely normal life again. I would suggest you consult your doctors and therapists before you do make any changes, but do try to get away from your night boots, walker, and AFO’s if at all possible. Remember that this just my opinion. Good luck in your improvement and “hang in there”!

GB

I could not be more agree what you are saying ghostbear. Im only just one year old of GBS and I got relaps in Dec last year. And I was back to same spot as I was many moths ago. I have my drop foot and I have trouble with my balance, I throw the crutch away as soon as I could, use theim only if Im in lot of crowd. My therapyst wanted me to hold on to theim longer but I dont see any improvment if I use theim. I try to have wall or somthing that I can depend on if I feel that Im falling, see if I fall I cant stand up I have no reflexion to help me up. I have no reflexion in hands or feet, what I try to make better is my back, and legg muscule to help me. I think we have to find out our self how we can deal with life with our resudat, nobody can help you there, and one day at the time is the best way. Sorry I could not help you Vicky but this how I does my things, And I throw the Abs long time ago, they was only to hold back on my progress.
xoxoxoxoxo
Helga