Mr. Suzman Goes to Washington

Memories of a Senate Appropriations Hearing

Ivan Finds a Sparring Partner!

Much more happened to me than I ever could have imagined, during my one-day visit to Washington, D.C. to attend the hearing of the Senate Appropriations Committee about Parkinson's research funding on May 22. I was very privileged, thanks to Senator Olympia Snowe of Maine, to be seated on the dais with the members of the Committee, as well as Senator Paul Wellstone of Minnesota (both of his parents are PWPs). As the world watched on C-Span, I witnessed Michael J. Fox, Muhammad Ali's wife, Lonnie, and four other witnesses testify for the common purpose of securing the vital funds needed for Parkinson's research. Scientists have asked for more than $300 million this year for Parkinson's-focused research granted by the NIH. It is also necessary to re-authorize the expiring 1997 Udall Act.

Many of the PWPs present had attended the Parkinson's Action Network's annual Forum, with its Udall Awards Dinner, advocacy workshops, and social opportunities, all reflecting the theme, "Fighting for a Cure." Michael J. Fox, Muhammad and Lonnie Ali, Millie and Morton Kondracke, PAN founder Joan Samuelson, and PDF Executive Director Robin Anthony Elliott, were among the more than 500 individuals present at the Senate Appropriations hearing.

Michael J. Fox's dyskinesias were continuous throughout his testimony. While asking for funds to "treat, heal and cure" PD, his voice was hurried, slurred, and soft. Eventually, the emotion of his testimony nearly brought him to tears, his speech accelerating so much that he could not read the last full page of his testimony. Still, he is a fountain of positive energy. He has a magical persona, like a much-loved Petit Prince, who travels the globe like a firefly, forever surrounded by the snap and glow of camera shutters and flashbulbs. I am awed that someone I admire so much can be so unselfish and congenial. He purposefully overlooks his parkinsonian symptoms as he moves quickly from group to group.

When Mr. Fox first approached me at the June 2000 Udall Dinner, he looked up and asked me immediately why I looked unusually healthy. He went out of his way to comment on my suntan from daily work in my gardens. He told me that my summer weather glow looked "wonderful". 

I got the feeling that he is also the "Field General" of the PWP troops, out on the battlefield, rallying the ever-faithful soldiers to get ready for the next call to charge. And to the battle we must go, because Parkinson's funding has not kept pace with the doubling of NIH funding during the past five years. Currently, we are at $198 million per annum. Although the Bush Administration has proposed $215 million for the next fiscal cycle, this is a long way from the more than $300 million our PD research scientists have requested.

The Appropriations hearing let out at 11:15am. As I went past the security checkpoint to exit the building, I could see that there was a crowd on the sidewalk. To my surprise, Muhammad Ali was surrounded by people who wanted his autograph. Earlier that day, his wife, Lonnie, had testified for him. She delicately explained that the disease was now overtaking him and that his partially opened eyes were "photophobic." Even as she characterized PD as "a relentless, remorseful, insidious thief," Muhammad's eyes remained nearly closed, rolled up under heavy upper eyelids. She went on to say, "We implore the NIH and Congress not to go halfway." I watched as the bright ceiling spotlights combined with the side effects of his antiparkinsonian medications to keep his eyes three-quarters-closed while she spoke.

During her testimony, Lonnie Ali had stated that her husband's PD symptoms appeared in 1984 (the same year as mine). So I called out, "Mr. Ali, would you like to meet another 19th-year young onset Parkinson's patient?" He looked up towards me. I got out of my rented wheelchair and walked slowly over to him. Security guards created an opening in the crowd, allowing me inside. At first, I spoke with Lonnie and gave her the red tulip pin (a symbol of hope for PWPs) that I was wearing on my suit. We immediately connected, as tulips happen to be her favorite flower. I promised her a little gift from the Maine Parkinson's Society (a box of James Parkinson tulip bulbs) for her fall planting season.

By this point, Muhammad Ali was attempting to get out of the car to greet me. His left hand was shaking near the door handle so I asked him if he needed some help. He nodded, yes, and I placed both of my hands underneath his right side and pushed him up. Once upright, he smiled broadly. With a wink, he began teaching me how to box. He positioned my hands and motioned for me to "spar" with him. I asked him to show me how we can deliver a "one-two punch to knock out Parkinson's." The small crowd cheered as he and I demonstrated our readiness to jump into the ring to eradicate PD from the planet. His undeniably heroic character still leaves me in absolute awe when I reflect on this unforgettable moment.