For Davis Phinney, it’s the little victories that matter to Parkinson’s sufferers like him
By Tim Reynolds, APTuesday, May 18, 2010
10 years after PD diagnosis, Phinney living well
Davis Phinney won more than 300 bike races in his career, believed to be the highest total for any American cyclist.
These days, he celebrates wins of a different kind.
A decade after being diagnosed with Parkinson’s disease, the Olympic bronze medalist and Tour de France stage winner is helping lead a program called “Every Victory Counts.” Phinney, dozens of others affected by the disease and a collection of medical experts are offering others with PD a collection of stories and coping tips.
“You could say it’s a different race for me now,” Phinney said.
The Davis Phinney Foundation is coordinating the project, which comes about two years after Phinney — the father of 2008 Olympian and world individual pursuit champion Taylor Phinney — underwent a procedure called deep brain stimulation, or DBS. A pacemaker was embedded in his brain and began tricking his nervous system into ignoring symptoms of Parkinson’s.
These days, he travels the country, telling his story to other PD sufferers. Often, many don’t know his background as a champion cyclist. They’re just looking for help.
Through motivational and fitness DVDs and other means, Phinney tries to provide it.
“The way you live well with Parkinson’s is beyond figuring out how to manage your medicines or if deciding if you should have DBS,” Phinney said from his Boulder, Colo. home. “It’s really working within the framework of your life and enhancing each and every day. I’m really proud of the foundation for being involved in producing and promoting this, good information on how to live well right now.”
And these days, Phinney, 50, is living really well.
“Connecting with other people with Parkinson’s who have walked in their shoes through the personal stories and anecdotes shared … is an invaluable way to gain additional perspective and motivation to take an active role in one’s own care,” said Dr. Monique Giroux, the program’s co-author.
The DBS procedure allowed him to get his life back in many respects. Traveling became easier, as did keeping fit. He can stay with his son on bike rides a little bit longer now than before. That’s no small feat considering Taylor Phinney is widely expected to become the next great American cycling champion, thanks in large part to the tutelage of people like his parents (mother Connie Carpenter-Phinney is a 1984 Olympic cycling gold medalist) and family friend Lance Armstrong, the seven-time Tour de France champion.
As he became more active in his own foundation, Davis Phinney said he realized that some PD sufferers simply didn’t have enough information about coping.
So with newfound energy, he decided to do more.
“I found, ultimately, the best thing I could do was just to stay active and stay engaged in life and be willing to take the step like getting DBS,” Phinney said. “What’s good about this moment? What’s good about today? And when something good happens, it’s like — boom! — arms go up — boom! — victory celebration. It underscores that I was actually present, conscious in that little good moment.”
Phinney explains Parkinson’s like this: To a sufferer, every day can seem overcast, with no chance of sunshine. He felt that way once, too.
It’s humbling at times, humiliating at others, and there’s still moments in the day where Phinney gets tired. But there are good moments now as well, something he was worried wouldn’t happen a few years ago.
“I would love to have Lance Armstrong energy and in a sense be involved with a disease that in many cases can be completely cured,” Phinney said. “But I don’t have either luxury. So I get tired. The disease, it does take a toll, absolutely. The disease will beat you down if you let it. The people who are engaged and active, they’re willing to get up off that couch. The most numbers of my tribe that I see are not inclined to accept they’re in a perpetual state of decline. They want to do more.”
