Great post, Steve. I especially can relate to this:

"Tons of money has gone into research, and that is good..We need research, but what about pd patients that are not having their needs met now?..What are we doing for people who have no healthcare, cant afford meds, and/or are financially challenged?...I think of people like Fred..(Hey Taxi)..who was living in that trailor, all alone with his cat, with advanced pd..How do you deal with problems like that?..What do you do?..Where does the $$$$ come from?..Fred was only one is a sea of God only knows how many who's lives have met, or who are meeting, or are going to meet the same fate..What are all these pd organizations doing for people that need help now?..What is the system doing for them?..I barely scrape by on my SSDI check, and I stopped Mirapex cold turkey last week cuz my neuro ran out of samples..I now have to depend on the generousity of a fellow parkie to send me some, cuz I cant afford $240 a month for the Rx..I have a few assets, and I have to hold on to them for dear life, because if I lose them, they are gone forever..Its not like I can up and go back to work full time and make a come back..We all have our personal challeneges because of this disease, and this is why I believe that the personal intimacy, the sharings of our struggles as well as our victories, is so significant and necessary"

I stopped taking Requip for the same reason. And the "coming back to work" issue is huge - it's a step that is almost impossible if you lose your job in the first place.

These are some of the unmet needs in our community that are often overlooked because they are difficult to deal with. I don't know if it is a PD problem or an American problem. Millions of people with chronic, incurable disease are living on the margins of our society.

Can we break it down into smaller, solvable pieces? I think about this a lot; housing is one area that always comes to mind. Drug prices are another piece of the puzzle. Helping people keep their jobs is a third.