Dystonia Support Group

I have had Dystonia since I was in my 20's , cervical, head movement from side to side , I beleive it's in my hands aswell , and lately I seem to have to clear my throat all the time it feels scratchy , now after reading some of these posts How did you lose your voices ? Wondering if mine is moving around here. I saw nueroligist years ago , she said it was in my walk too. I guess I am one of the lucky ones it hasn't really changed much over the years , the neck pain bothers me , I was on a small dose of Valuim the last 20+ years , even that needed to be experimented with , if I took 1/2 5 mg tablet morning and night it was ok, if I took only 1/4 it wasn't ok , soo I had to tweak the meds by 1/2's to get it to work. I don't think it stopped it but it helped with the muscle soreness. I have tried other meds and some of them made it soo bad I could'nt even watch TV because my head was moving so fast back and forth.
I wanted to go back to College and get my GED ,finding the Math harder to deal with being on the Valuim I went off it since 2007.

I am now finding I have sore muscles again, might have to start taking some sort of meds again.

My biggest problem with this , ohh I hate when people stare at me , my mind is fully intact , atleast I think it is , and when I am trying to use my fine motor skills digging for change in my purse , and my head moves or my hands are fumbley , people just stare, then treat you differently.

Reading can be a problem at times if my head is moving , and or typing, I know I twist into different positions to try and avoid the whiplash type movements. Sometimes putting my hand on my chin can help. We need a cure. I guess I am also wondering if eventually I can't work is this covered under the Canadain Pension Disablities ? That being said I am still working and I work in a very dangerous field , I am a fighter, but a tired fighter. :)

Thats my two cents for today.
Posted on 08/28/09, 12:08 pm