I hear you excel. The only thing is that this is a rare condition and nobody famous that I know has ever had it. There is some research going on, but there is really not much any doctor can do for it. They have botox, surgery (which is very dangerous for this condition) and medicine. I would never have surgery and can't have botox, so the only thing left is medicine. I have had physical therapy, but it didn't help.
If someone famous gets a condition, it is more likely that there will be more research for it.
I am thinking about leaving my body to science if I should die before the rapture. But with things going the way they are, I think the rapture could very well come first. If research could learn anything from me to help someone else, just one person, it would be worth it for me.