PD has so many variables that it's a wonder any of us are diagnosed or treated to obtain the best quality of life.

You know, before I go out in "public," I usually labor 2 hours to "put on my face" , and sometimes need help with some articles of clothing (buttons, laces, etc.).

Then it's a major endeavor at times to brush my teeth (you know what I mean - instead of your hands doing the brushing,, it's your head going back and forth!) Sometimes you can "walk like an Egyptian," then the next minute you're struggling to get across the bedroom floor (and I even CRAWL when I'm really off to keep from falling).

There are times when you forget even your own name, and then there's the periods when you swallow and you are certain the neighbor across the street heard it.

(I'm building up for an explosion) - you remember you have to be somewhere and you are already late because you have to do all of the above. You may nod off a second or two if you drive yourself, or you gave up driving a long, long time ago. So you finally arrive totally dressed and the fruits of your labor makes you look presentable, and somebody walks up to you and says, "How good you look, and you must be feeling a lot better. So how are you?" After you growl . . . "GRRRRR" - you should say "Have you got a couple of hours, and I'll tell you how I'm doing!"

I know you just want to sit down and either cry or curse. And you can't tell me that a researcher, neurologists who treats 2-300+ "conditions, John Q. Public, or even a close member family that lives under the same roof, can empathize - can totally know what it's like living with Parkinson's.

So how are we (and I say "we" because we - a half dozen here and there can't do it alone. How can we explain what we go through day to day, hour by hour? How can it graphically be represented? Well, there's a few of us (less than a dozen) who are trying withh the NeuroTalk book. We'll come here from time to time to request information - sometimes very intimate, personal information - but OUR STORY MUST BE TOLD!

There - I just had to get that out. I feel a little better just venting. But we honestly are no closer to a cure than we were 10 years ago (in my opinion). Is there anybody out there that can prove me wrong?
(sigh)
Peggy