By Ted Roelofs | The Grand Rapids Press
GRAND RAPIDS — Back in the 1980s, cyclist Davis Phinney was dubbed “Thor” for his bulging biceps and thighs and thundering 40 mph sprint finishes. In 1986, he became the first American to win a road stage in the Tour de France.
Today, Phinney, 50, faces a daily fight with Parkinson’s disease as he spreads one simple message — never, ever give up.
“I’m in a much different race now. What we need is hope,” said Phinney, in an appearance Monday before the Economic Club of Grand Rapids at the J.W. Marriott.
Phinney established the Colorado-based Davis Phinney Foundation in 2004, dedicated to research aimed at improving quality of life for those with Parkinson’s. Its primary focus is research related to exercise.
But before that, this former elite athlete who won hundreds of bike races learned, as do others, just how relentlessly this disease can stalk both body and spirit. He was diagnosed in 2000 with the degenerative disorder of the central nervous system that often impairs motor skills, speech and other functions.
At least 500,000 Americans are believed to have Parkinson’s disease.
“You have to be able to look through the cloud and see certain bright spots,” he said.
“It’s little things. It’s having a good conversation. It’s giving and receiving an energetic smile. When you live with Parkinson’s, you are looking for the little victories.”
At times, he has relied on his wife, Connie Carpenter, to open his pill bottles or button his shirt. He was forced to quit his job as a TV cycling analyst because he couldn’t hold a microphone. He would sit on his hands to make them stop shaking. He was depressed.
Still, racers look for wins where they can find them.
And so Phinney advocates “every victory counts,” a strategy his foundation launched earlier this year to help others learn how to live well with Parkinson’s.
Its cornerstone is a manual that includes lessons from more than 50 people with Parkinson’s who share stories on topics such as diagnosis, family, exercise, meditation, intimacy and the importance of humor.
It includes worksheets designed to aid communication with health care professionals, family, friends and co-workers.
And it is no surprise Phinney continues to push exercise as a remedy for Parkinson’s. A foundation survey found that 82 percent of people with Parkinson’s believe exercise could improve their quality of life but that less than half had talked it over with their physician.
Phinney told his audience that he most often speaks to groups of Parkinson’s patients. They often tell him they are waiting for a cure.
“You know what I tell them? ‘Do not wait. Waiting is too passive.’”
He concluded his remarks with a story about a race he ran in middle school, after raising his hand beforehand when the coach asked who would win. He was the only one to do so.
Phinney recounted that he had never lost in the 50-yard dash in elementary school, giving him confidence. But this was a 100-yard dash. He ran out of steam 40 yards from the line, finishing far behind the others.
After, the coach consoled him, telling him: ‘The real winner in life is the one who doesn’t quit.’”