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Ataxia Support

Results of a survey in the UK

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Hi Beryl,
Did you participate and do you know of any results regarding identified ataxia conditions?
Best wishes, David

Hi David :slightly_smiling_face: I donated DNA for a separate Project in Newcastle, and they found a link with the mutant gene SYNE1,but it wasn’t 100%. There’s a lot to wade through in this link :smirk: basically it reflects people’s thoughts about the 100,000 Genome Project and that’s about it. The good thing is, it’s proved to be useful and in due course will be in general use :slightly_smiling_face:

Re the 100,000 Genome Project, I can’t think of any posts on any of the ataxia support groups, where someone has had their ataxia diagnosis verified in this way. Many people who were involved with the Project haven’t had any results. And, as yet, it appears that there isn’t a defined medication for any of the SCAs.

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Sadly I know only too well there is so little to feel encouraged about re medications it seems. I’ve helped with a couple of research projects headed by my neurologist at Columbia Hospital but all very vague ideas from my standpoint. I’ve agreed to participate in another after my biannual appointment at the end of the month. It supposedly is looking at how EEG might provide insight into what might actually be happening in the cerebellum.

While I was in the UK in June I didn’t take the Riluzole medication I’ve been using for several years as I felt it wasn’t really helping me. I’ve come off it a number of times over time. Flying, as much as I love it, has a very negative impact on my condition and both flights really did a number on me. However, as it seems my balance and walking continues to deteriorate I’ve returned to the medication, deciding that maybe it is having some weird efficacious effect.

Hope you’re managing to maintain your health and happiness.

David

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