Progression update 1/24

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 I know everyone, when diagnosed, wonders about disease progression.


There are a few areas of hope here.  First, the FDA just approved a drug that helps with the progression of Friedrich’s Ataxia.  I wonder if we can hope that a drug for SCA6 is on the horizon? 

Exercise:  there is now research supporting the positive effects of exercise on SCA6.  Exercise, along with all sorts of goodies, can re-establish some sense of control. It slows progression.  The good news is that, among the ataxias, SCA6 is among the slowest-progressing with the smallest number of symptoms.  It’s hard to be grateful at all with ataxia, but I am grateful for this.  I was diagnosed in 1988 and although I am in a wheelchair, there is still a good bit I can still do.

 
I am sure you have been told that progression is an individual thing.  In part, that’s true because they really can’t predict or know.  In part, it’s because progressions can differ widely and no one really knows why.  Is it the number of CAG repeats?  (Being studied.)  Is it age of onset? (Being studied.) Exercise?  (Being studied.). No one knows, so hedge all bets.  You can’t control CAG repeats or age of onset.  But you can 


control exercise and attitude.  And eat a good diet and get good  night’s sleep.

http://crossmark.crossref.org/dialog/?doi=10.1007/s12311-023-01655-w&domain=pdf



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