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Ataxia Support

SCA6 self-help group

I wondered whether it would be useful for people with SCA6 to have their own thread to swop info, swop tips on how to cope with the condition, etc.

My Dad had SCA6 so I wasn’t completely surprised when I got symptoms and then a diagnosis. My Dad was in a wheelchair at 70 and I’ve been trying to do as much exercise as possible to ward this off (I’m 60). Because I was diagnosed early on, I still play tennis and go for short runs.

The best advice I got from a consultant was to blink or do little jumps whenever I feel that dizziness coming on. It seems to work for me.

SCA6 also affects me mentally (I think). I am concerned about my ability to remember words so I do the (easy) crossword every day and learn French.

Any tips or advice or interesting thoughts from any other SCA6-ers?

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Hi Cassiopeia :slightly_smiling_face: It’s good to hear you are still able to enjoy your activities, because as you probably already know we’re all encouraged to keep as active as possible, for as long as possible, and you can’t start too soon :wink: Have you had any contact with your local AtaxiaUK support group :thinking: SCA6 is ‘quite common’…in my local group we have 3 people, and I know 3 others apart from them. And, on Facebook Ataxia Support Groups I’ve come across SCA6 people who regularly post. In October, AtaxiaUK will host their National Conference, that’s always a good way of coming into contact with others, and there will undoubtably be several members with SCA6.

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Many thanks for your advice.

Regards

Caroline