I'm right now attending a retreat in the Laurel Mountains of western Pennsylvania at a beautiful conference center. About 50 or so PWPs and partners have been here since Friday for a program whose subject is "Living Well With PD," and whose focus this year is "nonmotor symptom of PD." We've heard how the self-help books don't help when they relegate nonmotor symptoms to 3% of content, especially since it has been known that nonmotor symptoms have a greater effect on QOL overall than the motor symptoms. Sleep problems, how to find help for the symptoms that don't interest neurologists, and how PD affects the family have been covered and discussed. I have chatted with PWPs who had never been informed that they should never quit their drugs suddenly--and how to say "no" to a neuro who wants them to do just that--and overheard someone say they could see that some of us need a psychiatrist "but I'm not that crazy yet." (I don't know if she was commenting on the general quality of psychiatrists or of PWPs, LOL.) I raised my hand at one Q&A period and suggested that a NEUROpsychiatrist is the one you want (trained to deal with brain damage). These were just some highlights, hoping you dear readers will get the idea of PWPs and partners grappling with the hard facts they may never have had information about before, or may never have had the courage to face before, but can in this very safe environment.

Here's why I'm posting in this thread: It's up to us, folks. We have very few in the medical community who understand in the way that a speaker at this program understands (Paul Short, PhD, neuropsychologist). We have to take the message to other patients, no matter what else we do, and teach them what we have learned from the sharing on this board all these years. It takes patience to explain that StaLevo has sinemet IN it and is not a new drug, and yes I take Comtan, that's in the StaLevo, too. It's difficult to mention constipation to perfect strangers, too, but there are people who think they're alone with their problem, which doctors other than a neuro are afraid to address because they don't know the PD drugs and the neuros can't see why they should treat something that belongs to the specialty of gastroenterology. We need to help these people, and not with another upbeat glossy newsletter, but with sound information (check out the PDF or MJFF websites) and personal experience that we can all relate to.

Paula and all, where do you think we should go with this? Should we be making speaking engagements if we're able? Writing a book? I was in the GDNF advocates group you mentioned, and I know it wasn't enough.

I'm sure of one thing: we don't need anyone's approval or cooperation or funding to advocate for ourselves and raise a tide of demand like HIV activists. Someone please invent a cure for PD apathy and lack of motivation. Or maybe create an understanding in well people so they'll take up our cause.

I continue to ponder--my greatest gift and my worst flaw.

Jaye