Sandy had his routine visit with the movement disorder specialist today. Didn't learn anything new. I'm always hoping someone will give us a prognosis. Once swallowing problems begin, he will have an idea of where we're at (supposedly). He previously diagnosed him with PSP with CBD (or CBS) overlap. Today in his notes, he indicated corticobasal syndrome as the diagnosis. I know these two are nearly impossible to distinguish, one from another. Sandy's left side is affected much worse than his other side. I'm not even sure if the right side is affected. I guess it doesn't even matter which of these is the culprit and we'll probably not know, and the treatment is the same so not necessary to know...I guess.
He said some of his patients have had this 7-9 years but that's about the maximum. However, some people on this site have indicated it's been going on 15 years. Any thoughts on this?