Davis Phinney loved winning. And he was famous for it. Before Lance Armstrong won his first Tour de France and back when Greg Lemond was making his inroads into the top of the European peloton, Phinney was an American all-star. He was only the second American to win a stage at the Tour and took the bronze medal in the 1984 100k time trial at the Olympics.
But after years of feeling off, he was diagnosed with early-onset Parkinson’s disease. In the years since that diagnosis, a lot has changed—from what he can do with his hands to the way he thinks about life. Along the way, he founded the Davis Phinney Foundation. But he’s not looking for a cure; instead, he’s working on a way to help people live well today. And a big part of that is the Every Victory Counts manual. As the foundation prepared to release the second edition of that resource, Scott Rosenfield spoke with the cycling legend.
What exactly is the Every Victory Counts manual?
The Every Victory Counts manual is basically a tool for people—whether they’re newly diagnosed or not—that fleshes out more of what they can do to improve their own situation in very reasonable and understandable ways than what they might just get from their neurologist. It’s chock-a-block full of good information, and education, and wisdom from patients, and doctors, and caregivers.
And what are you hoping that people living with Parkinson’s disease can take away from the manual?
Everyone with Parkinson’s has similarities and differences. The common themes are that you are watching yourself becoming progressively disabled. And that’s disconcerting. A lot of my community feels isolated. They don’t want to go out and engage in the world as they used to know it.
I want people to be able to feel like this manual helps them find what they are particularly looking for—whether it’s becoming better prepared for your check-up with your doctor or what specific questions to ask, or motivating you to find a Parkinson’s group that’s actively engaged in promoting well-being—whether it’s a singing group, or yoga or dance or movement.
How have you applied the lessons from the Every Victory Counts manual and your racing career to living with Parkinson’s?
When you’re an athlete, you need to be fairly self-aware and you need to be consistently taking care of yourself—eating right, sleeping well, and training for your sport. When you live with a disease like Parkinson’s, those same tools can still prove valuable in stemming your decline somewhat. If I start my day right and am eating correctly and getting out for a little bit of exercise—not too much but something is always better than nothing—and then get on with my day and make sure I’m monitoring my energy levels, and eating right, and taking care of myself as best I can, I find over the long term my health is better, which is true for anybody, but particularly true if you have a degenerative disease like Parkinson’s.
What about limits imposed by the disease?
There are things that take me an inordinate amount of time, like washing dishes, or this last month while I’ve been with Taylor following his training rides and being like a bottle boy, handing out water bottles to the group and washing about 60 bottles a night and refilling them in the morning, he’s like, Can I help you out, because we really have to get going.
It takes me a lot longer to accomplish the tasks, but there is a benefit in continuing to challenge yourself to do things. While I don’t do them nearly as quickly as I once did, I still can do them. I try not to become too reliant on others and let everyone do things for me, but hold on to chores that force my hands to function, and force me to focus so I’m not dropping things or whatnot.
Why does the foundation focus on improving quality of life?
When we first became a foundation my initial interest, like Michael J. Fox, was to raise money for research that would find a long-term cure for the disease. But as time went on and I met more and more of my community—my tribe, as I call those of use with Parkinson’s disease—it became clear to me that there is a whole segment of my community that was just waiting on hope that some researcher somewhere would come up with a cure-all fix for the disease.
So many of us were just waiting, and that kind of passivity leads to a certain amount of decline. And life was just going by and going by and going by. I really felt it was important that people engage in their own health more, and find ways to not just stem decline but find ways to enjoy life while living with this progressively degenerative disease. And those messages and that encouragement, backed up by solid information and programs, has been very, very well received. Read the rest of the article.