We're still not sure what the root cause is of the issues that run in my family, but we have found some pretty rad treatment. Ampyra is aimed at MS patients, but has been found to be effective in episodic ataxia type 2 as well. Personally, I think it's helping by increasing membrane excitability. That being the case, I'd expect it to be beneficial for any type of myopathy or neurodegenerative disorder.
I'm stronger (breathing is easier), I can walk further (still look like a tower about to fall over tho), and I can raise my arms more (not for more than 30s or so). Truly excellent. Of course, I still feel like hell, have bouts of stupidity and don't sleep well from all the spasms and pain - but I can move :)
So all I need to survive covid is a bubble suit and some toilet paper
LET'S DO THIS!