Yes, that has captured the essence of Paula and many others like her.

I have worked with Paula...the first PWP I ever met...and Peggy...the second I met, for something like 10 years now. They remind me of the 60s and all those who chained themselves to the gates in protest...only the protest today is for better therapies and research funding and the like...and a cure would be nice too!

I DO want GRC back online!! Paula, you and I have talked on the phone about this. You worry that there are too many similar sites currently online and I disagree with this assessment. GRC brought something to the PD community that I don't see currently online anywhere...correct me if I am wrong...interviews with the likes of Stanley Fahn, Tony Lang, Mark Stacy, Jay Nutt...and with the movers and shakers of the PD community.

Peggy is amazing to me. I have watched Peggy over the years...never giving up and never giving in to PD! She and Paula both could be sitting quietly in their chairs at home knitting, but they are not. The words, move it or loss it are not lost on either of them. Carey is another (indigo) who belives these works.

Today I can see and hear in Peggy and Paula that they both would like to give up and give in, but they are driven souls with purpose in every minute of every day.

There are many in the PD community who believe in Move It or Loss It.

Paula, you accurately described yourself when you said, "I became a strategist and investigative journalist of sorts, with dyskinesia and somedays in my pajamas all day." And, today you're are still living with all of these words. (Bits of memory are returning as I type: How many times did we walk the beaches of the East Coast of FL together! and nibble on ice cream cones! back in 1999 and 2000, before I moved out of FL.)

Time does march on, as Peggy stated. I remember when I was the only one with grandchildren. Peggy reminded me often of your envy for me having four grands. Now she has three, Paula has one and I still have ONLY four! Linda H is the only one yet to have grand kids bless her life. I mention only Paula, Peggy, Linda and myself, as we are still a pretty tight group.

Over the years I too have watch my granddaughters change...the oldest of the four...one will be 19 in May and needs no one anymore. I think this is one of the hardest parts of being a grandparent...when they no longer need you to make their life whole. The next oldest just turned 11 and doesn't snuggle on the sofa watching TV anymore...today she is on the phone to the point that when the phone rings and Amy is at home, no one answers the phone...that job it left to Amy.

I was there all those early years, but I think it was the fervor over GDNF that truly brought me to a different place regarding clinical trials. I remember the scurry to construct the GDNF history pages on the PPP website that are still there today and will always be there, I worked some long webmaster hours back then.

I was at Peggy's for a week in February. She copies a CD for me that contains a song by Rascal Flats. The lyrics include this:


Like so many of us, I too don't want to be caught "sitting down" when the end comes for me. I want to be found still "running."

Over the years so many new PWP friends have come into my life. I treasure all of them. Some are quiet and some pick up on the fervor and take off runnin'

For me my PD community is my family and this family keeps me sane. I spend my days doing what I can and sharing with this family of mine. So, many of them are only typed words in a message board, or in an email or a private message. Some I hear from on rare occassions, but they are there. There is something about this PD community of ours, no one loses another, regardless of the physical distance or the distance of time...we are always there for one another.

I don't have anyone in my family that I can depend upon and I have lived alone for almost 24 years now (21 with PD)...maybe my younger daughter, but she lives several hours away.

Okay, I will quit here before I get myself into trouble!!

Good night,
Carolyn