Happy New Year 2025
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. Gomez more about this at our next meeting; I'm really not qualified to answer medical questions about this but happy to disperse known information. Per the attached label, dalfampridine, also known as Ampyra, is an oral medicine that FDA approved in 2010 to improve walking in multiple sclerosis. According to the attached FDA approved label, it is a potassium channel blocker and its most common adverse side effects were urinary tract infection, insomnia, dizziness, headache, and nausea. A couple members have confirmed that it caused dizziness for them, causing them to stop it and the dizziness went away. It is contraindicated for people with a history of seizures, moderate or severe renal impairment, or hypersensitivity to the medicine. Although not FDA approved specifically for SCA6, SCA6 is a very rare disease, more rare than multiple sclerosis, so it has not been studied in a clinical trial. This is where we might ask Dr. Gomez about his general experience with this medicine for his patients with off label use. Maybe the survey will help here too? Of course, if you are interested in this off label use of dalfampridine, you would need to discuss it with your doctor because everyone's clinical situation is unique. I do think this conversation really started because the Biohaven therapy has not seemed to work well for SCA6 in Dr. Gomez's experience, yet it keeps getting advertised for people with SCA6. This does not necessarily mean it does not help anyone with SCA6; sometimes a therapy that is proven to not work well for most people with a particular diagnosis, still works for a select few. Again everyone's situation is unique. Any final decisions about taking any medicine should be between you and your doctor. Dr. Gomez is an amazing resource to all of us though and we are fortunate that he shares what he knows so freely and honestly with this group.
Also, plenty of research is in progress to try to identify therapies that might help prevent symptoms in the future.
I really like this SCA Source article describing research form Dr. Gomez's lab with more simple language than the research articles:
Over this next year, I'm hoping Dr. Gomez's work continues on the above to identify better therapies that get at the root of the cause instead of just symptomatic relief. I believe his work to more rapidly identify changes in ataxia movement (response to therapy) will help lure companies into performing more trials for ataxia, so that is important too. I also hope this survey with Hannah Casey will help identify more habits, medicines etc, that might more immediately help us understand what might help delay onset/progression or make ataxia symptoms less severe too. https://redcap.uchicago.edu/surveys/?s=KK7N44F43HMDNYY3
Cheers and Best Wishes for 2025,
Terry
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