PAN 2002 - Paula

The PAN Forum proved to be as educational and exciting as I thought it would be. The PAN staff was prepared and committed; most have a connection to Parkinson’s in their families that makes their jobs meaningful, as well as professionally desirable

I guess I could break the experience down into two categories: the people and the education.

The people were there in numbers higher than ever before. After three years, I am proud to call many of these people my friends. The Parkinson’s community is like a sub-culture, and the longer and more frequently one attends group functions, the more people you recognize and talk to. Then, you see their names on the Internet, and it creates a bond that is very unique and productive. 

The people at PAN are bright, dedicated people, who want to do what is right to help us all. No matter who you talk to, you can see and feel the intelligence. I can’t help but think that there IS a Parkinson’s personality after attending a function such as this.

The education is priceless. PAN had us scheduled for just about every minute, often providing guest speakers who were experts in their fields. “The Hill” has its own set of rules about some things, and it became apparent that the PAN staff has experience on “the Hill.” We learned about lobbying, research, SCNT and advocacy. There are people working hard, very hard, to solve this illness. However, we need more advocates. There are still relatively few who are doing it all. These few, in many cases, are ill and operating within a window of functional time. This was brought home to us at the forum. We were exhausted from it, and many of us didn’t bounce back immediately.

The Udall Dinner was a little like being Cinderella at the ball. It was definitely out of my price tag league, and therefore, I turned back into a pumpkin at dinner’s end. Seeing Mike Fox give Greg Wasson an award was very meaningful. I didn’t eat a bite of anything after the salad. Now I can say I once had a $250 garden salad.

The testimony was a fascinating experience. Muhammad Ali and his wife make a striking couple. I didn’t realize, until his wife explained it, that Muhammad has extreme sensitivity to light, and must keep his eyes closed. It made me realize, that although he voluntarily put himself in physical
discomfort as a professional boxer, he probably didn’t bargain on such extreme discomfort for life.

I came away with literally dozens of ideas and renewed motivation. But my body wasn’t quite so cooperative. The fatigue served as a reminder of why we were all there, and the magnitude of what we are trying to overcome.

We must lend our voice to the cause. With the Internet, it’s never been easier. Hope to see you at the next forum. Hopefully, it will be one of the last, and instead we can go to Star Trek conventions or something.

Thank you all for being there,
Paula
www.grassrootsconnection.com