[frogga]

Hi

I went seriously downhill a month ago and my arms broke the extension spasms they had been held in for over a year and are now twisted across my upper chest/ neck and has led to me losing the use of both my shoulders. (Before they got worse I couldn't use the hands or the arms but I could use my shoulders to use my power chair etc). This now means that I am totally dependent for EVERYTHING and it really sucks - I had so little independence anyway, but I've now just lost any independence. The problem is that we are trying to "rescue" one arm by using a splint to extend my right arm out to 90 degrees but because the spasm is so strong I get dreadful pressure marks all down my right arm and after taking the splint off tonight we realised that even with a bandage underneath it the skin is becoming raw in places. Also the skin on the inside of my elbows are breaking down as well. I know that because of the RSD my skin is worse anyway - but this is still so frustrating. If I can't wear my brace I have no hope of being able to stretch my arm enough to ever regain function in it but yet I can't wear my brace if my skin is breaking down (the RSD leads me to developing lots of ulcers). Also since I started wearing the brace I have developed pretty bad pitting oedema in that arm.

So - any advice on retaining skin integrity? The carers wash my arm twice a day, I spend 2 hours with the brace in the morning, 3 in the afternoon, we put material between my upper arm and my lower arm, wear arm warmers from my humerus to my fingers. Can't think of anything else.

It is so frustrating though! However I am lucky to have awesome mates - 3 of them in my flat now know how to hoist me and get me in and out of bed (so they can now get me up after the carers put me to bed! though seems abit weird to me as the carer lives in the room next to mine - but hey!)...

Any help would really be appreciated.

Thanks

Frogga xxxxx