Creating New Advocates
              by Greg Wasson*
 
What do $240 million, the PAN Forum, this e-zine, and the first ever clinical trials of at least four treatments for Parkinson's that promise to actually reverse the progress of our disease have in common? They are all the part of a circle that we call advocacy in 2004. Advocacy has brought us to the brink of finding a cure for Parkinson's disease. When it comes, it will be the first time a previously incurable brain disease has been cured. It will be an achievement that will be remembered in the history of medicine, in the history of humankind, and for as long as history is written. It will mark a turning point in man's ability to treat chronic illness, and it will be only the first domino as chronic illnesses and conditions begin to fall by the wayside. It will have eventual economic benefits, in continued or renewed productivity, in public and private health-care savings, and in the relief of human suffering, that is almost unimaginable. And you can be a part of it.

The world of Parkinson's disease, for patients, for advocates, for scientists, and for politicians, is a world turned upside down when compared to that same world eight short years ago. The year 1996 was an important one, a momentous one, in the struggle to find a cure for this disease. It was the beginning of a new era in the fight. In 1996, the Morris K. Udall Parkinson's Disease Research Act Was Passed. It was signed into law the following year by President Bill Clinton. It appropriated $100 million to the study of the cause and cure of Parkinson's. It was the first time that a specific appropriation by the federal government had been made to provide funding for NIH grants for our disease.

It started what was soon be a true mass movement by PD patients and those who for them, a movement that has only continued to grow as each year has gone by. People with names like Joan Samuelson, Jim Cordy, Gerrie Haynes, Morton Kondracke, Anne Udall, Millie Kondracke, Lupe McCann, Carol Walton, and many others, fought night and day, office by office in the halls of Congress, to do something that had never been done before. And they did it. Some of them, many of them, continue to fight this fight, determined to see it through to total victory. They were the true founding fathers and mothers of Parkinson's advocacy, and they made possible through their struggles our opportunity to have an even greater impact and to see this fight through to the end.

There is a story about Lupe McCann of New York that everyone involved in Parkinson's advocacy is familiar with. Faced with a representative who after listening to a group of advocates stumping for the Udall bill simply said "I can't help you, I'm sorry," Lupe continued to sit in his office, clearly not about to move, and replied with an equally firm response that has become a rallying cry -- "That's unacceptable." Before Lupe left that office, the legislator had promised to cast his vote for the act.

In the year before the Udall act, approximately $25 million per year was being allocated by the NIH to research Parkinson's disease. In the fiscal year 2004, it is estimated that $240 million will be spent by the NIH alone to find a cure. Working with a bipartisan group of committed politicians such as Arlen Specter, Mark Udall, Tom Harken, Thad Cochran, Carolyn Maloney, and the Parkinson's Working Group in the House of Representatives, Parkinson's advocates have helped to double the NIH budget, convene the first ever Parkinson's-specific congressional hearings, and appropriated several hundred million dollars to fund PD research. These things were made possible by the efforts of the Joan Samuelson's and the Lupe McCann's and so many others whose names should be remembered. And now it is our turn to pick up the baton and continue the work that these exceptional people, or rather these ordinary people who found themselves capable of doing exceptional things, began in 1996.

I can tell you firsthand that it doesn't take a genius, or a public speaking background, or political background, or even interest in politics, to make a good advocate. All it takes is your memory - your memory of what happened today, what happened yesterday, what happened the day before that, and what you fear may happen tomorrow. All it takes is your story. Because our stories are the single most powerful weapon that we have in our arsenal as we struggle to find a cure. I can tell you firsthand how true that statement is. When I walked into a Tennessee congressman's office in Washington D.C. while attending my first PAN Forum in 2000, accompanied by Brenda Tucker, Peggy Willocks, and AJ Campbell, I saw it happen. This  particular congressman had five minutes to listen to us he said. He had a vote on his own bill due to come up in five minutes. He listened for five minutes, and his aide came to remind him that he was due on the floor. Five minutes later the aide came back again, and once more 10 minutes later. That congressman never made it to his own vote on his own bill. Because he spent a half-hour listening to us tell what it was like to have Parkinson's disease. We weren't great storytellers. It was our first Forum and we were as nervous as cats. But then as you remember and begin to describe what a life with Parkinson's is like, what it was like before Parkinson's, how this disease has affected you and your family and friends, you can't help but make an impression on your listener. Because what you have been through and are going through and face is real and true and hard. And only the most hardhearted person could listen to story like that and not be moved. You won't always get their vote, but you will always get their attention. And the feeling you'll have when you are finished is satisfying beyond measure.

So, come and be a part of this generation's new grass-roots army of PD advocates. You don't have to be anything other than who you are. Because who you are is someone special - someone who has been through and continues to go through a serious chronic illness the likes of which most people never experience. And, like most PD patients, you have endured that illness and carried on with your life as best you can. Those are your credentials. That is your credibility. And sometimes it takes seeing the look on the face of a person in a position to help you, to realize how extraordinary we unextraordinary PWP really are. We have the power to change our own prognosis from one of incurable illness to one of the eventual cure. How soon that comes depends entirely on how much we believe in ourselves, on our right to be as well and healthy as the next person. We're only a few short steps away -- let's carry on the legacy of those who came before us, so that we can eliminate the suffering of those who would otherwise follow after us.

(Italics) *Greg is a national spokesman for the Parkinson's Action Network (PAN). This year's PAN Forum will be held in Washington, D.C. March, 28, 29, and 30, 2004. If you would like to attend contact either of Virtuality's editors: Carol McLeod (cmcleod@one.net )or Peggy Willocks (tnpeg@yahoo.com ) for more information.