I am 25 and have possible CA or SCA, maybe hereditery. I can still walk but struggle unaided, I have slight downbeat nystagmus which only effects me on my worse days (I find focussing hard) and I am part deaf. My speech, writting, typing, co-ordination and mental ability is unaffected. I have tried a number of things to try to help from COQ10 to walking poles, none of which help some make it worse. Having tried so many things I am becoming more dis-heartened, then I found support dogs and the sensory belt. If possible could you please try to answer my questions and provide advice?
Has anyone got a sensory belt or a support dog or has used one? If not how and what has helped you?
What breed and size is your dog? What do you get it to help you with?
How did you get your dog?
My OT is telling me a lycra suit may helkp but they seem very unhygenic?
If anyone has nyother infomation please share it?