Ataxia

 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.

 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?

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...

  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...