My DH has SCA (unknown genotype). There are about 26 genotypes that have been identified to date, not to mention gluten ataxia. Only about 10 of the genotype tests are available to the public, and he has turned up negative for all 10 of these as well as non-responsive to a gluten-free diet.

Many {{{HUGS}}} for your sister, Cathy! She is a trooper!! My DH is 52 yo, and had to retire last August because he was no longer able to do his job due to all of the coordination issues. In general, SCA causes slow but steady loss of coordination in all motor functions, including walking (poor balance), talking (slurred speech), and swallowing.

To top this off, he's losing his hearing and is not happy about getting hearing aids, to put it nicely. I had to quit my job to help him and it's not going well. We have 2 boys to put thru college, each of whom has a 50% chance of inheriting this disease. I must go back to work soon.

I'm scheduling an appointment at UCLA ataxia clinic. While we know there is no cure, they might have some suggestions to alleviate his depression (and therefore mine!).

There is additional information at this website:

http://www.ataxia.org/

There used to be an ataxia section here at NeuroTalk, but it has disappeared, which is really sad because there were some very nice people and I miss them. I hope they are all doing well!

Best wishes,
Louise