Singing The Unsung

Davis Phinney is a Tour de France stage-winning cyclist and athlete who was diagnosed with early-onset Parkinson’s when he was 40 years old.  Instead of resting on his laurels as a world-class athlete and successful sports commentator, public speaker, and journalist, he established the Davis Phinney Foundation in 2004.  The primary mission of the foundation is to help people with Parkinson’s live well today.  Their main activity is the Davis Phinney Victory Summit, a one-day seminar that includes presentations by researchers, clinicians, physical therapists, professionals, caregivers, and PWPs.  The goal is to empower people living with Parkinson’s to enhance their quality of life.

Today, the Davis Phinney Victory Summit came to San Antonio for the first time, supported by a very large number of local organizations, clinicians, and medical practices who help people fight back against Parkinson’s. Organizations like the World Parkinson’s Congress and the National Parkinson Foundation, as well as pharmaceutical companies and medical device manufacturers that are critical to the fight to live well with PD were there today also.

For the past nine months or so, I’ve been fortunate to work with one of those groups, SA Moves.  SA Moves is a non-profit foundation created by a group of physicians, Parkinson’s advocates, and medical professionals who are kind (or crazy) enough to let me lead them.  SA Moves is chartered to provide educational programs for patients, care givers, and medical professionals involved in caring for PWPs.

All the foregoing just serves to show that there were many organizations involved in creating and executing today’s victory summit.

I have never had a conversation with a foundation.  I have never had a heart-to-heart with a corporation, shaken hands with a consortium, gotten a hug or a pat on the back from anyone whose last name is Incorporated.  The organizations that made today’s Victory Summit so successful for the almost 700 people who came are absolutely essential, but they are made of people, and it’s the people and the web of relationships that we create with each other that make it all work.

I was fortunate enough to meet Davis Phinney today and shake his hand.  I joked with him that several people had asked me if I was him today, and a few had asked if I was his brother.  He said he was flattered, and he hoped I was too.  We agreed that we were a couple of good lookin’ guys, which seemed more ego-preserving than agreeing that we were similarly ugly.  (Davis Phinney IS a good-lookin’ man; I have no opinion about how hard I may be on the eyes). He is an icon among the cycling community and among PWPs, but he’s also just a nice guy who goes out of his way to put you at ease and who is easy to talk to.

I had easily 100 conversations like this one today.  I spoke with people who were newly diagnosed and who were scared, and I spoke with people who were deep into the advanced stages of Parkinson’s and who were scared.  I reestablished acquaintance with people I had not seen for a few weeks, and people I had not seen for years.  I talked with people who I had never met before, and people I have known for 20 years.  I taught some; I learned some.  I joked with people, and I was struck to the core by stories of suffering that would make Job pale.  I told people how much their example means to me, and I was blessed to have a few people tell me that I was a source of inspiration and comfort to them.  And throughout the day, one thought  kept recurring to me; how lucky, how fortunate, how blessed by God I am to be in the company of such heroes.

There’s no question in my mind that the people with whom I spent my day today are heroes.  The people who live with PD every day; the people who provide for their care and support; the people who use their expertise and steady hands to ease suffering; the people who conduct research, develop drugs and devices, and help people to understand them; the people who build organizations that organize, fund and deliver the services that are critical to living in defiance of this abominable disease.

People with names like Tony, Claire, Maria, Sheila, Tommy, Eric, Amy, Paula, Cindy, Patty, Sean, Larry, Heather, Davis, Jo, Laura, Ken, Scott, Michael, Becky, Vikki, Albert, Robin, Arnie, Chris, Leticia, Peggy, Beth, Trisha, Patrick, Gretchen, Glenn, Kasondra, Marjorie, Kathy, Richard, Melinda, Steve, Christina, José, Patrick, Rebecca, John, George, Mary, Doug, Andrew, Karen, Robin, Philip, Ruth, Javier, Carol, Teri, Israel, Rhoda, Caroline, Catherine, Jean, Bill, and millions others around the world who go to war every day with PD, HD, dystonia, essential tremor, Tourette’s, and other intractable, incurable diseases.

You are all my heroes.


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