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Happy New Year 2025

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  An early Happy New Year Everyone! It's not too early to start warming up to those New Year's resolutions. My husband got me a watch for Christmas that also somehow works as a cell phone, a wallet, and a fitbit too. A great watch but it has been giving me some grief this week about how few steps I'm taking each day. Fortunately, I finished work yesterday a little early yesterday, took a long long walk on the beach, and got over 10,000 steps which felt like a pretty big accomplishment after a pretty pathetic week. I'm looking forward to more of that once I send out this e-mail. With my new found energy, I've compiled all these thoughtful responses from many of you to the question from one member asking for wheelchair advice (please see attached document, also including an older 'tricks of the trade' for newer memebrs who were not here for that session). Some members also shared their experiences and questions about dalfampridine. Maybe we can ask Dr. G...
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Message from Dr. Gomez

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Messages from Dr. Gomez and Hannah Casey (research lead for this project):   Dear SCA6 Network Members, From Dr. Gomez:   Thank you very much to all of those who have filled out our survey.  The questions on this very long survey have been collected to a large extent from the questions you all have asked me over the years. Our intention is to get answers from a large number of people in order for me to give informative replies to patients' questions in the future. We have been doing reasonably well, but we still have many more surveys to receive. The SCA6 network includes about 350 people. So far I have only received electronic surveys from 130 people. This is many more than the paper survey we conducted previously, but to really learn something, we have many more to go.  Can you please let us know when you complete the survey or let us know what trouble you’re having with completing it. Thank you very much. From Hannah: 'Another email reminder would be greatly ...
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Not Doing Wel

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 I usually post about how to deal with ataxia.  But I feel like a fraud doling out coping information.  Now it’s me with awesome anger, severe depression and crying 24/7.  I know this is temporary and that I will better manage things and pull my head out of my ass.  For those on Facebook saying it’s hard to be housebound with no friends.  I see you.  And I understand.
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Ataxia and me website

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 I found this website helpful. ataxia and me.org
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Drugs for ataxia

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