u/WeirdnessRises

I have ataxia from SCA and I am 22 years old. I am in college and beginning to struggle with walking a lot, which is difficult since my campus is large and I need to get between classes. I was wondering at what point it would be useful to start talking to my doctors about a wheelchair? I use a rollator sometimes but I still end up with a lot of tiredness and soreness by the end of the day. I am tired of being uncomfortable and in pain and I realized I have mainly avoided thinking about this due to the stigma around being a person who uses a wheelchair who can technically walk, even if not very well.

For anyone who is technically still able to walk shorter distances but chooses a wheelchair sometimes, what were the signs that it was time to start talking about it with a doctor?

I won’t get too in depth into it but it’s similar to how people with Parkinson’s struggle with facial expressions, also known as, “masked facies.” Even if I really focus on forcing myself to make a face it gives me facial dystonia then.

My genetic condition that causes this will possibly affect my hearing eventually and I always wanted to learn ASL anyway but I am really hesitant to try because I know facial expression is a really big part of it. Though I also guess it’s not that dissimilar to how I actually talk which is very monotone due to the same problems. People often think I have no emotions or am mean or very cold which is definitely not the case lol.

Are there any others here with a similar issue and how do you work through it? What could I do for this to make asl work and still communicate effectively?