Posts

Wheels

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Dear SCA6 Network Members, I hope you are having a good summer! I've been thinking recently about how great wheels are and wonder if any species other than ours uses wheels as a tool.  When moving homes, there is nothing like a hand truck or a dolly for heavy boxes and furniture; people love their cars, including some that can self-drive these days, bikes, skates, and scooters; most offices have desk chairs with wheels; but then somehow 'wheelchairs' are not as glorified. Tammy Schumann wrote a wonderful book titled "Scooter Sagas: Coping with Ataxia" describing her journey to more outdoor freedom with her scooters. The ataxia resource and discussion group (AR&DG) had a session discussing how to best travel with ataxia which definitely involved wheels. I was walking through an airport security line in Denver, CO last week thinking about how quickly so many people were walking the mile of roped aisles, back and forth, and how if anyone had any trouble walking h...
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First Step

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Doctors

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 I just read a post on Facebook that neurologists  are useless.  My response was that if you can do it, go to a research hospital like Chicago or Florida to meet doctors who know ataxia.  Many neurologists can go their whole career without seeing a single case of ataxia.
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Rage part 2

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 Still filled with rage.  My psychiatrist put me on Lexapro added to the Wellbutrin.  It made me so sick that I weaned myself off to see if the daily nausea and headaches would subside.  Please has anyone had this experience?
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New Opportunities

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Dear Members, Happy Spring!  I hope you all are doing well. I just wanted to provide a couple updates and share about a few opportunities. Dr. Gomez's laboratory is busy analyzing the SCA6 questionnaires that so many of you have participated in, thank you. His lab already has a couple publications just this year in PubMed: Longitudinal Changes in Patient- and Clinical-Reported Outcomes in Early Spinocerebellar Ataxia Types 1, 2, 3, and 6 from the IDEA Study Jan 2025: Describes how certain patient reported outcome measures can measure changes after 2 years, but that more sensitive measures of change are still needed to measure change over shorter lengths of time. https://pubmed.ncbi.nlm.nih.gov/39876568/ Reliability of remote video ratings of the scale for assessment and rating of ataxia March 2025: Describes how assessment of SARA ( Scale for Assessment and Rating of Ataxia) can be performed accurately by video. This is good news for those of you who want to get a SA...
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