I decided to try to find out how many people have the disease I have. It is not known but less than 1:2000 000.
Thrown up in the results was a book, My Life With Dystonia by Cheri Tannenbaum. Like me she is Ashkenazi Jew. Her dystonia has made her body very stiff, immobile and unable to speak although there has been improvement, I don’t know if this was with the help of drugs. Most importantly, she never had OPEN BRAIN SURGERY.
So the atrophy on my left side might have been totally unnecessary. All the pain it causes me….
I can’t dwell on this. It does me no good. But I am shocked to my core.