PARKINSON’S IS A DEBILITATING, SOMETIMES HUMILIATING AND STILL MYSTERIOUS DISEASE.
Davis Phinney was diagnosed with early-onset Parkinson’s at age 40. Today, following 20 years of coping with the erratic symptoms of PD thanks to various forms of treatment, including deep-brain stimulation, he is still living an active life—maybe not quite as active as when he racked up 328 victories in 18 years as a bike racer but one that allows him to focus on things that are important to him. He says that much of his recent transformation is due to using the latest generation of electric bicycles, telling Peloton in an email: “I am a huge fan and advocate of e-bike technology, as it has completely reinvigorated my cycling and, in truth, my life!”
“One beautiful thing about traveling on two wheels at speed is that it’s a different balance mechanism that kicks in as long as your wheels are rotating,” he said about riding an e-bike as a Parkinson’s patient. “You know you’re not going to fall over in the way that you could if you were standing in your kitchen.” Phinney said that his balance has improved from doing boxing classes twice a week, along with spin classes—”my pedaling has improved quite a bit since I started the class.”
On one bright winter morning, before heading to spin class, Davis and Connie were happy to share their considerable experience with e-bikes. Connie was just back from Girona, where she’d been helping her recently retired bike-racing son Taylor Phinney move out of his digs. She pointed to some rolled-up canvases, Taylor’s best paintings, which she’d brought home with her from Spain. Their Nordic-skiing daughter Kelsey, who has an apartment downstairs, was out of town that day. For our chat, Connie nursed her laptop at one end of a long family table, while Davis sat at the other end, ready to roll. Parkinson’s has slowed his speech, but the steely-eyed Phinney was just as focused on answering our questions as he used to be when winning sprint stages at the Tour de France.
Peloton: The last time I saw you on a bike, Davis, you were riding around town on a Trek with a belt drive. How did you get into e-bikes?
Davis Phinney (DP): It’s just progressively been more difficult for me over the years with the Parkinson’s to access my original power source…and so we got into the e-bike. I don’t know why. John Burke [of Trek] had actually sent us an e-bike about 10 years ago, when Taylor was sponsored by Trek. But at that point the bikes had this massive battery on the bike carrier in back, and they had not evolved to the point that I felt that I was actually going to ride that bike that much, and we eventually gave it back. Flash forward a few years and Trek’s been very good to us, first sending their CrossRip model, then their Domane+—which is their Ferrari for e-bikes. And then, of course, Pinarello got in the mix thanks to Taylor having a conversation with their president David Vigil. David said he’d love to get my feedback on their Dyodo. And those bikes have proven to be fairly spectacular.
You said in an email to me that these new e-bikes have not only transformed your cycling but also your life….
DP: Definitely. I mean, there’s so much pleasure I take from being able to ride, and ride comfortably hard instead of uncomfortably hard, which I would denote as being at too slow of a pace. So….
Connie Carpenter (CC): Also, for you, because you have such a muscular imbalance—his Parkinson’s really affects one side more than the other. When he was riding he could become very tilted on his bike because he would have to compensate and he was really collapsing on one side and not able to work…and working too hard on the other side. On the e-bike, [the extra power] compensates.
He just rode with a group down at the Olympic reunion [in Colorado Springs] with Jack Simes, Mike Friedman and John Howard…and they were just looking at Davis and going, “Oh, my goodness, you look just like you looked when you raced,” when they saw him on his e-bike.
DP: And that’s pretty much the way I feel. It’s reminiscent of the days when [7-Eleven teammates] Sean Yates or Ron Kiefel would come up behind me and know that I was struggling and just give me a hand on the back, and this [the e-bike] is just the hand that never goes away and never tires. And it’s just given me such a newfound love of cycling, and the experience of being able to carry my speed again without being excessive. I mean, depending on what motor configuration you get, you can really just buzz around town; and you see these people going up hills without hardly pedaling and they’re going 25 miles per hour. That’s never been my thing; I’ve always kept on just a modest amount of power, because I want to get the benefit of riding and just need a little boost—I guess that’s the way I put it.
So you use the lowest power setting?
CC: Not always, because we ride a lot steeper roads than we would normally get to ride. So then you have to [use full power] in order to make it. It would have been not even a question of making it before. It allows us to explore a lot more.
DP: The other thing we’ve started doing is when it isn’t full winter out we started to have a “new road of the week” ride. Just taking these adventurous rides in the mountains. Like going up to Gold Hill [at 8,500 feet elevation] and taking Gold Hill Road all the way back till it meets Lefthand [Canyon]….
CC: We’ve done that before but we hadn’t done certain sections of the [unpaved] Switzerland Trail, especially on a road bike, and we just feel that you can try different roads and different spurs. Where does that little road go? And you just go up it. And maybe it goes up and you have to turn around, but you haven’t been up it before…all these little roads in the canyons that we hadn’t ridden before. It’s really fun.
What have been your longest rides?
DP: Well, probably the longest ride was that ride we took up to Gold Hill and then to Sawmill Road and back up to Lee Hill. And then above Lee Hill…and that was about the full extent of the battery. That was about four hours.
CC: We’ve done a 100K ride at one of the charity events that we work with in Canada on e-bikes. In that case I demo’d the latest Specialized, the Creo, which was really nice. It’s been fun to try out different bikes. They’re all a little bit different…and the challenge for the consumer is to find the bike that suits them. There are those made for commuting and then there are ones like the Pinarello, which you have to look really hard to see that it’s an e-bike. I talk to people all the time about my e-bike when I’m out riding to explain that, because there are some pretty big misconceptions out there….
DP: I mean, our typical conversation will start when we go past someone, we stop and they catch up, and they’ll be like: “Oh, you have e-bikes. You’re cheating.” And we’ll be like, “Who are we cheating? What race did we enter where we’d be accused of that?” And from there the conversation would go from there to Connie, who’d explain….
CC: Basically, it gives people way more capacity for way more enjoyment. I would never tell anybody that they had to get on an e-bike, but I don’t think they need to tell me I have to get off my e-bike. And I think we have a problem in terms of shared use of trails and bike paths because as is always the case there’s always a few people who don’t respect other people when they’re overtaking them.
I was going up Olde Stage—which is a road [not a bike path]—and there was a guy that I passed; and I always say “coming up on your left” if I’m gonna pass somebody—and this guy was yelling at me: “You should have said something.” “I did say something, but you have earphones in”—which I say is taboo as anything, out on the road. So I said, “Don’t yell at people; that’s not nice.” I like to stop and defuse the situation….
As far as Davis is concerned, when they start to limit access for e-bikes on trails is a problem, because they can’t limit it for a person with a disability, and Parkinson’s is a disability. But what’s he gonna do? Have a sign that says, I have Parkinson’s? Don’t hassle me, because I have a right to use this trail?
Do you ride alone sometimes, Davis?
DP: Oh, yeah. I mean, most days, I ride on my own either commuting out east to the DPF offices or else to one of the various Parkinson’s classes I take. And it’s all bike paths, as much as I can; I’m an inveterate bike-path user. And even going out on [Highway] 36, that new bike path has been the one [for me]. So, in that way, because we live in Boulder, we have the luxury of feeling fairly safe from cars and whatnot, and so, yeah, I really enjoy that.
When you were down with John Howard and those guys in Colorado Springs, were you doing any sprints?
DP: Oh, of course! We were rolling out of town and Jack [Simes] was like, “Can you still sprint?” So I said, “Well, we’ll find out, won’t we, Jack.” We went out by the Garden of the Gods, which is not an insignificant ride hill-wise, and looped through there. And I was just so buzzed to be out with that group and it was just so fun, and then coming into town we had a ride guide leader, Jeff Pierce’s wife, Jo, and so I said, “Where is the town-line sprint?” And she said, “Well, we’ll have to make one up.” And so you know when you’re rolling down towards town in Colorado Springs, coming back over the highway—when they had the bike race there [the 2011 USA Pro Cycling Challenge] and that finish line from the prologue was right over that bridge. She said, “How about the top of the bridge?” And I just took off and those guys were all like, “Oh, shit!” And I maintained full power all the way, which was Power Plus, of course, but with the Pinarello when you go over 20 miles an hour the power kicks off, and so it was actually mostly my own power there; and that felt pretty good.
The e-bike is obviously heavier than a regular bike…. Does that affect the riding at all?
DP: That’s one really great thing about the Pinarello—and more manufacturers are going this route—using a smaller motor and a smaller battery. So the Pinarello is a reasonable weight for a road bike; it’s about 28 pounds. Which compares with the heavier bikes with the Bosch motors and the big batteries that can weigh upwards of 50 or 60 pounds….
CC: That’s like the e-mountain bike I have, which is a beast, so we now have a trailer hitch rack, because we couldn’t put it on the [car] roof anymore.
DP: And that accommodation has proved so helpful to us, because like last spring we took this road trip to Utah, and we just popped the bikes on and off, and got out for a ride in Zion, or whichever national park we were at. And it was so wonderful, just to be able to have the e-power and take all these adventurous rides. There’s just a marvel in being able to climb at a reasonable pace. So in my mind’s eye I can see Connie churning away in front of me and me focusing on her rear wheel the way I used to in the peloton back in the day. It’s really special.
Also, we went to Aspen, and Aspen’s fairly unique because it gets a lot of tourists who rent e-bikes…. So we rode up to Ashcroft [12 miles each way from Aspen], and must have passed 40 or 50 people who also had e-bikes. But, you know what, they’re just riding and that’s a beautiful thing. To me, we’re all cyclists, and the only exclusion of that would be the people who use the throttle-twisting motors on their bikes, which I’m not in favor of. But as long as you’re pedaling and generating some of the effort I feel like that’s legit.
Have you ridden with other guys with Parkinson’s?
DP: We had a charity ride, this Tour de Victory, that our foundation was a recipient of the proceeds. We had a number of people with Parkinson’s join, and Republic Cycles came out and gave people the ability to ride with their e-bikes. And so it was fun and a little bit scary…because, you know, when you give someone an e-bike who’s not used to having that much power and then they feel like their 30-year-old selves, and so they’re zooming ahead and smiling and grinning…and when you’re in a group of people that’s not always the best thing to have people zooming around you…but that, yeah, we definitely had some people to open up their eyes as to the beauty of e-bikes and their potential.
Do you recommend e-bikes through the foundation, perhaps in a newsletter?
CC: If there’s someone with Parkinson’s who hasn’t been riding you want to start them with a spin class but if they want to get outside…. One of the nice things about the e-bike is when you get on the bike it starts moving, so you don’t have that lag trying to get the bike going, which can be a real problem for someone with Parkinson’s. We do encourage people to try it as an option.
DP: To my view, the biggest advance that’s happening in e-bikes is that they’re getting lighter, and the reason that that’s important is not because you can’t roll a heavy bike under power, it’s not a problem once it’s moving, but the weight of the bike in maneuvering it when you’re in your garage or whatnot, is problematic, certainly for Parkinson’s people. But I know of at least five people who have my condition who’ve bought bikes and are riding now because of the e-power.
Some Parkinson’s patients I know have a big problem with balance; would e-bikes work for them?
CC: Part of the problem is getting on and off the bike, especially when you have to stop for traffic. But balance can be worked on. When Davis first had Parkinson’s there wasn’t any opportunity. Now, all over the country, there is a lot of boxing, dance, singing, spinning, tai chi and other modalities that allow you to work on some of the things that Parkinson’s strips away.
DP: As Connie said, the difficulty is just getting out, putting your foot down at the light with the surety that you can get started again, but…spin classes get you pedaling. It also gets you into the community—the tendency is to isolate yourself. And here you have a room full of people who are shaking and whatnot and happily engaged. It’s really a wonderful thing!