I have been looking for someone that has the same form of ataxia as I do. I have SCA 26 and I would like to talk to someone who has the same thing. I’m getting to the point where I can barely walk and I don’t know what to make of it it’s distressing for me because I’m the only one that can do errands and stuff like that.
SCA26…is ‘rare among the rare Ataxias’….and not often mentioned online. I’m a member of several Ataxia Support Groups on Facebook…and haven’t seen much mention there. It has to be said…there is much more participation on these groups.
Although ataxia symptoms can vary a lot, and progression can also vary even within the same family …It is likely that you cope with symptoms in common to most of us here.
It is very distressing when symptoms become so debilitating that they interfere with daily life…many of us contend with exactly the same and totally understand.
It’s possible you live in an area that has an Ataxia Support Group who meet ‘face to face’…or have Online Zoom Meetings…it’s worth making enquiries.
The National Ataxia Foundation posts regular info…
There is an upcoming Webinar…hosted by a Specialist Neurologist, you could register and ask a question. This Specialist holds monthly Webinars, and answers all kinds of enquiries…I’ve previously joined myself.
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Thank you. Sometimes it gets kind of lonely when someone doesn’t have the same type as I do. But I guess ataxia is ataxia regardless of what type we have. This is one of the better groups I have been in. Facebook groups have a tendency to be a lot of complaining and not a whole lot of support. I have tried so many Facebook groups and it’s just been more depressing than anything. This group seems to be a lot more informative and understanding in being able to relate to each other and get information like that. And it’s what I’ve been looking for. Thank you so much for the information I will definitely look into it.
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