Heya

This will have to be a quickie.

Arm dystonia - happens with RSD sometimes. Is she using gutter crutches? or a gutter frame. Both will help with wider stability and will enable weight bearing through the forearm instead of the wrist. Wider base means less falls and better stability.

Can she stand with crutches without someone helping with balance?

We found it is imperative to pull the spasm out and it hurts like hell. But with me anyway (I have full body RSD after developing it when I was 16 and also have generalised dystonia etc etc) if my spasms aren't pulled out then my nails grow into my palms etc and the longer you leave a joint in spasm the more difficult it is to get out. (I have very bad contractures from the RSD). With hand/ wrist it helps to put the hand in hot water and then go for each finger individually and put something like a rolled up bandage in the hand, it stays in if you tie the bandage over the top of the hand. Botox can sometimes help if Nottingham will do it. Try and encourage her to use the hand as much as possible.. and sometimes disctraction helps - like getting Ali to close her eyes and count backwards from 100 in 7s might help release the spasms abit.

The alternative spasm reduction thing is to push the joint as far into the spasm as possible - as the muscle then lets go if you push hard enough into the spasm.

Some people are affected by blocks like that. Does Ali go swimming?

Also have you looked at Bath pain management program for young people? I have never been but it is apparently very good.

ok that's all for now. Feel free to PM me if you want to.

Take care

Love

Frogga xxxxx