Rehabilitation from nerve damage and muscle weakness
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November 16, 2006 at 2:19 am
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My son is now 18 years old and has suffered from CIDP for a little over 8 years. He has recieved Prednisone, Cell-Cept and IVIG. He is currently on all three. At his worst point he was completley paralized from the shoulders down. Now he can walk with AFO’s for long distances but cannot run or jump. His hands, wrists and feet and ankles have been affected the most. His last relapse was not sever and was about one year ago. Although he is not activily experiencing an attack on his nerves( due to the treatments he recieves) he has alot of residule weakness and nerve damage. His biggest challenge right now is that he cannot walk or stand without wearing his AFO’s because his feet want to roll out and it is very painful. He pretty much walks on the sides of his feet without the AFO’s. Because of this he has to sit to shower and cannot even walk from his room to the restroom with the braces. His thighs and calves are really very strong but his ankles just want to roll out and especially his left foot is turned in because of weakness on the outer muscles in the ankle and foot.
My question is… Can this be fixed with Physical Therapy? He can only do exercises that arent weight bearing because if he stands it would have to be with his braces which would prevent him from using the necessary muscles/ What kind of exercises can he do laying or sitting that will help his feet to retrun to the normal position so that someday he can be without the AFO’s for at least a short period of time? We have gone to P/T many times but he doesn’t tolerate aggressive therapy well. Any suffestions? He is losing hope of ever being able to walk or shower without wearing his braces.
I would appreciate any input anyone may have.
Thank you so much,
Shelbyrose:confused: :confused:
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November 16, 2006 at 6:09 am
Shelley, let’s be honest, CIDP is a chronic condition, the toughest thing of all is to accept it and learn to cope with disability. Your son has severely damaged peripheral nerves. No physio will correct that, gentle physio is useful for the nerves and muscles that still work. DocDavid
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November 18, 2006 at 12:12 am
Doc David,
I know that some of the residual weakness and nerve damage is there to stay. But I do not believe that there is no physio that will correct this to a degree. My son has been paralyzed completely, twice for almost a year each time. After both of those incidents he was able to return to competitive baseball. Granted that was in the first 3 years of his CIDP and he has had it for 8 years now so I know that there is alot more long term nerve damage. But as long as I continue to see some type of improvement I have to believe that there is hope for a good amount of returned strength and funtion. With God anything is possible and without hope we are doomed. I am not trying to be unrealistic. I know that he will always have a degree of disability. But I truly believe that with the right treatment and extended time without relapse it is possible to regain some of what has been lost. He has not had a relapse now for a little over one year and I have been told that some nerve and axon damage can take up to 3 years to repair and regrow. Although they may never regenerate completely, they will improve with time away from being attacked.
I hope that you can see that I am not in denial but rather am just looking for methods to increase my sons motor functions as much as possible. He however is still hoping to play baseball again someday. I won’t be the one to tell him that won’t be possible. That is something God will show him in God’s timing. Deep down my son knows that he may be like this the rest of his life. But for him to completely accept that would be giving up and he is not a quitter.
Pressing On,
Shelbyrose
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November 18, 2006 at 7:24 am
Dear Shelbyrose!
Sorry to hear about your son! I have a couple of tips that migh (or might not) be useful. For many years now I have suffered from severe pain under the soles of my feet. Luckily the motoric nerves have not been cronically damaged, so I have never suffered from foot drop and have never needed an ancle brace. What I could recommend, though, is custom-made soles to put in the shoes to relieve the pain. They have worked wonders for me from long before I knew what was wrong with me.During the years when I could do no other kind of exercise, I used a stationary bike for 10 -15 minutes every day. My neurologist told me it was an effective an harmless way of using\training my muscles, as long as I did it without any resistance on the bike, so that I only moved my feet without using any force to irritate the nerves.
If you, or someone you know have an old, simple bike without all the gadgets of modern stationary bikes, it will do fine, and it won’t cost you much either.
Good luck!:)
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November 18, 2006 at 9:43 pm
My son does not suffer any pain thank God. He just can’t walk without the braces or his feet will roll out and he will fall or after a short period of time he will be in pain. If he wears the braces though he has not pain at all. He is riding a simple stationary bike everyday now for 10minutes and we figured that was a way to keep him active without alot of stress to his body. Thanks for you advice we will keep up the bike.
Shelbyrose
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November 19, 2006 at 7:33 pm
Normally, I would say the same thing to you as Doc David, that he is doomed for life with AFOs. But, if he can truly go into remission with his CIDP; which I believe is more likely in the case of young people, & the nerves are no longer being attacked, then I believe that there can be some nerve regeneration for the first two years after the CIDP has been totally arrested.
On the other hand, if it is a case of getting IVIG once a month, then again when the nerves are being attacked again, then I would say no. I can empathize about the braces, I have been wearing them since I was able to start walking again the summer of 2004. I already know I have healed as much as I will heal, & that I will always need them. But in someone so young it might be different. I agree with you that one should never give up hope, but after a certain amount of time, we must accept the inevitable…
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November 20, 2006 at 6:55 am
Shelbyrose!
Swimming, or just moving\playing in water may be a good exercise too, that doesn’t strain the nerves too much.
Good luck
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