As a revered pioneer of modern American road cycling, winning more than 300 races in a career that included his being the first U.S. racer to win a road stage of the Tour de France, Davis Phinney has inspired countless bike riders in this country. And since his diagnosis of young-onset Parkinson’s 12 years ago, the native Coloradan, now 53, has become a beacon of light to a very different community thanks to the work of his eponymous foundation and his own personal story of living a full life with this degenerative (and as-yet incurable) disease.
Phinney is modest about his own achievements and immensely proud of his family: wife Connie Carpenter, the first-ever women’s Olympic cycling champion, and their two children, who are also outstanding athletes. Son Taylor, still only 22, had a breakout year as a member of the BMC Racing pro team this year, winning a stage of the Giro d’Italia, while daughter Kelsey is a promising skier at Middlebury College in Vermont. The family played a major part in Davis Phinney’s 2011 book, “The Happiness of Pursuit: A Father’s Courage, a Son’s Love and Life’s Steepest Climb,” written with Sports Illustrated reporter Austin Murphy. And family was one of the first things we talked about during a recent chat at the headquarters of the Davis Phinney Foundation in Boulder, Colorado.
At one of your book readings last year, I remember you said that maybe your Parkinson’s has brought your family closer together. You certainly seem to be very supportive of each other and each other’s projects…. Is that true?
Yeah. For sure, me having the disease, and having it compromise my past lifestyle, has made us closer as a family. For one thing, I’m not getting on a plane and going off somewhere all the time, just to serve my job. Taylor was 10 when I was diagnosed, so he has a significant number of memories of having me around as the über-fun, ever-energetic dad that I loved to be when the kids were young. Kelsey was six, so she has only ever known me with being compromised somewhat with Parkinson’s.
But what I love about both my kids—I don’t know that it’s a gift, because it’s been imposed on them—is that their response is so striking to me in that both have tremendous empathy and understanding for people of any kind of disability. They also both appreciate their own physical gifts and realize that those gifts can be transient, and so it’s not something that Kelsey and Taylor think about every day. Both my kids have dealt with the disease in [learning] how to live well with something with tremendous grace. They make me proud eternally, and they are both big highlights in my day.
In a sense, I have some luxuries that not everyone can afford. When I was diagnosed with Parkinson’s, I pretty much quit both my day jobs—one was working for Pearl Izumi, the other working [as a television commentator] for Versus. But having that time allowed us to live in Italy for two years and for me to find myself in a place that wasn’t Boulder and I didn’t feel so under the microscope of everyone. And it also allowed us to come closer as a family, like you said, and that single event, the moving to Italy and becoming really involved with each other’s lives, continues to this day to provide reward. When Taylor won the opening stage of the Giro this year and was on the after-race show every day for like a week, speaking fluent, Veneto-inflected Italian, he became one of the real icons of the race. And he loved it too.
That was one race you didn’t travel too, right?
Yes, I stayed home just because following the racing around Europe is arduous even when you’re full of health and vim and vigor. But I had some great race experiences with him this year. I can take time away from the foundation as needed, especially in this period when my kids are so active. It’s not so much that they need us, although in Connie’s case she’s this wonder woman for our kids in regards her help, but being able to take time to see race like Paris-Roubaix—Man, that was awesome!
You founded the Davis Phinney Foundation eight years ago. How is it developing?
The Phinney Foundation is an organization of which I’m really proud. It’s taken some time to figure out our niche and find our place in the world of charitable organizations and just what our purpose is. But now we have such great response to our messaging, and to our educational symposiums, and the inspiration that we provide, that I feel like, while I wouldn’t have chosen to have this disease, we don’t always get a choice. So I feel like I’m making best use of my name and my natural instinct to educate and inspire people, and the Parkinson’s tribe is very receptive to not only what I have to say but also the foundation’s collective efforts.
I have a friend who’s just been diagnosed with Parkinson’s, just a regular guy. How could the foundation help someone like him?
Besides availing himself of our literature, he would be greatly served by coming to our main event, the Victory Summit, with all-day symposiums, free seminars, where we get the Parkinson’s tribe together—we had about 600 most recently in the Denver Tech Center—and you get a good deal of practical advice on how to live better right now.
As an aside, we don’t invest any of our resources into raw curative research, and the reason is that there is still this whole disconnect of information-flow that these people who have Parkinson’s—potentially like your friend— who don’t yet even really understand the mechanisms with which they could better serve themselves on a day-to-day basis. I’m a big proponent of not waiting. I use that phrase a lot: Don’t wait for a cure. And the reason I say that is because when you have a progressively disabling disease like Parkinson’s just the notion of waiting is somewhat of an inert, inactive state. And if you’re waiting, you’re declining. And we, as a population, with our disorder, need to be more proactive than that…. But we need information and resources and outlets with which to define how we can live better, and function better, and reengage in our lives while we have this disorder.
So we have these ongoing symposiums—our next ones are in Phoenix at the end of January. We have the message and the accumulated knowledge of our presenters, who run the gamut from neurologists and neurosurgeons, to physical therapists, to dance therapists and speech therapists, as well as people living with Parkinson’s—including me. A lot of that information and more is in print form in a booklet that we provide for a nominal fee, which is called the “Every Victory Counts” manual. And I think for people, especially if you’re newly diagnosed, that is one of the best places you can go to realize that it’s not a despair sentence to be diagnosed with Parkinson’s.
You’ve always tried to keep as active as you can, Davis, riding a bike obviously, and hiking—is that something that everyone with Parkinson’s should do?
Yes. Everybody should try to be as active as they can. I say something is better than nothing when it comes to exercise, and that’s true of everybody across the board. But especially when you have a disorder that tends to withdraw function from you progressively. So you have to fight to retain function, whether it’s cycling or golf, or any manner of sport or game that gives you pleasure. That’s an end in itself. I go out for a bike ride, and I feel better when I come home because I went out.
You know, there’s this inertia of giving into the disease which tends to make it feel more attractive to sit on the couch than to get my butt out the door and go to ride through the neighborhood—at varying speeds from slow to moderately slow. That’s it for me in a nutshell. I’m a sprinter and what I take from being a sprinter is that you have this moment-to-moment viewpoint; you don’t look way down the road. I’m not looking years ahead. I’m looking like, well, I had a great lunch with my son today. That’s a victory. And after this interview, even though it’s cold outside, I’m motivated to get out on my bike just because I know it’s gonna make me feel better.
I really try to amplify the good aspects of the day, because if you don’t choose to do that then you are just surrounded by clouds, and the cloud of the disease can just become overwhelming. But, by not looking at that first and foremost, each day I live and breathe is better, and I have managed to minimize my rate of decline significantly though attitude and exercise, and enjoying life. That sounds very Boulder….
Not at all. I think it’s a good philosophy for anyone’s life, knowing how fragile life can be. Enjoy every moment.
And I hear that a lot, John, and I know that’s right. It’s just more of an imperative for me, and for my brothers and sisters who live with Parkinson’s. And I could couch all that with saying, “I get it. It’s not easy to do,” and sometimes I make it seem like it would be and should be just simple. “Oh yeah, it’s easy for you, Davis Phinney, ex-bike racer, lifelong athlete, to get off the couch and go roll down the street.” And so in sense I try not to say everyone has to be like me, because they’re not, and their backgrounds are different. But it doesn’t make it any less important, you know.
Returning to your kids, we know a lot about Taylor, but what’s your daughter doing with her abilities?
Both my kids provide bright spots to me daily. Kelsey is in Middlebury College. It’s about as idyllic a place as you’ll find, that part of Vermont. Her intention is pre-med, with a neuroscience bent…and she’s also there to ski. She’s on the Nordic ski team, and was out skiing in Montana over Thanksgiving, and flying through Denver, so we pulled her in overnight and had our family Thanksgiving.
Is she possibly going to get to Olympic level as a cross-country skier?
That’s definitely in her DNA. It’s more difficult to be Kelsey Phinney when everybody assumes that—from her parents to her brother, that’s the assumption. But she handles that very well and she’s a gifted, technically beautiful skier. And it will come down to how much she chooses to dedicate to school, because she has always been a high-achieving student. I think she wants to be at the elite level of skiing, but saying that I don’t want to put some sort of pressure or expectation on her.
I’m sure you’re not the sort of parent who’s going to push her to do it. You didn’t push Taylor. It’s his choice to be doing what he’s doing. You can’t manufacture ambition in someone….
Certainly not. Endurance sports are too hard. We’ve certainly known our share of parents who’ve either outright pushed too hard or engineered too much the circumstance with which the kid had to do various sports, and almost in every case, kids grow up, or turn 18, or go off to school, and they immediately turn away from that.
What Taylor is doing must inspire you and help you too. It must make you feel not just proud but give you motivation to be well and active every day.
That’s a good point…with both my kids. We’ll see Kelsey race in the national championships in the first week of January down in Utah, and then see Taylor at the European classics in March. I hadn’t put it that way in my mind, that I was wanting to stay healthy for them, but I’m sure that’s true.
I would think that to have as full a life as you are having must be helpful to anybody who has Parkinson’s in combating the symptoms of the disease….
It’s medicinal, absolutely. It’s medicinal. I just really enjoy our family relationship. Both our kids like having their parents around. Kelsey’s very independent, but she still calls me and tells me about her ski workout or how her training’s going three or four times a week. Which is wonderful. And Taylor has an apartment in Boulder, but for lack of other offers he will frequently come to the house for dinner. Nothing beats his mom’s coking! So in those senses we feel really, really lucky and privileged to be part of their success and their lives now that they’re adults.