cs-I reread your post a couple of times and you are on to something with your comment of "We don't need another 100 million that just gets "wasted" on "research" by people whose power to help us is zip; what we need is a centralized "hospital to go to die."
Your pain is evident in your writing and for that, I am sorry. There are a lot of people alone with this illness, and a lot of people who are with someone, but as good as being alone. If there was a comfortable place for parkinson's patients specifically, what a blessing that would be.
I am married. My husband while he does love me, has done nothing to find out about this illness. I am afraid that when it comes time for me to quit work, quit housekeeping, slow down even more, his understanding will be hard to come by. I frequently think that I would be better off on my own; it's stressful to keep a relationship going, and any added stress right now makes me worse. On top of that, he's got two grown girls and 5 grand children who take precedence over my two children and grandchild. More cause for conflict. He's a great provider and a homebody; but he doesn't take weakness and illness well. I forsee a struggle in the coming years. And it won't be fair to him, either. Clinging to our vows "til death do us part" is important, but in all reality, will this work?
My ideal place would be anywhere along the east coast, which is the one place I have felt completely at peace, home and comfortable.