Phinney takes on the biggest challenge of his life with grace and humor, ‘but it pretty much sucks.”
By Lennard Zinn
Davis Phinney may well qualify as a cycling legend. These days, though, the man who has won more bike races than any other American is facing the toughest challenge of his life: Living with early-onset Parkinson’s disease.
Each May, during the final week of the Giro d’Italia, I have the pleasure of working to put on a bike camp in northern Italy with Phinney and his wife, 1984 Olympic Gold medalist Connie Carpenter.
The two have been hosting bike camps in the U.S. and in Europe for many years, but now the physical difficulty ramps up steeply each year as his disease progresses.
Phinney, the first American to win a road stage at the Tour de France, has a good reputation as an approachable and caring person. Bike camp offers an outlet for Phinney to express himself physically in ways in which his competition-honed body is accustomed, as well as to share a stellar career’s worth cycling knowledge and experience. The camps, too, have given him a chance to spend time with old friends and new, encouraging many of them through whatever struggle they have on or off of the bike.
Through the recently-established Davis Phinney Foundation, he has another way to share his experience, support others dealing with the same disease, and network with groups and individuals working with Parkinson’s.
Visiting the Madonna
This year’s bike camp started gently, with three days spent riding around beautiful Lake Como, with the biggest climb being to the church of the Madonna del Ghisallo, the patron saint of cycling, where Connie’s Olympic champion jersey has been inducted.
Hers would be joining an array of yellow jerseys from the Tour, pink jerseys from the Giro and rainbow stripes of world champions. Indeed, there are now so many that the church’s pastor has to rotate them through display, since there simply is not space for all of them. It is here that Phinney beams with pride at his amazing wife, so accomplished at a world of skills in addition to cycling.
Phinney still looks remarkably fit. Part of that is due to the fact that his diseases keeps his muscles tensed so much of the time. Former 7-Eleven masseuse Antonio Cappeletti, who still lives on Lake Como, works with every bike camp the Carpenter-Phinneys put on in Italy.
“Davis’s muscles are very tight, especially in his upper back and neck,” he says. “My chiropractor friend in Como says that it’s due to his crash through the back window of a team car during Liege-Bastogne-Liege.”
Graham Watson’s photos of the cut and bleeding Phinney lying behind the car are infamous. CAT scans over a decade later indicate an old neck fracture, probably from that crash. Indeed, early in his disease, doctors at one point theorized that his symptoms were caused by calcification around the original break and resulting pressure on nerve tissue in his spinal column. Unfortunately, the correct diagnosis was more serious than even that.
Phinney has chosen not to take the standard Parkinson’s drugs, which can greatly reduce the symptoms, most noticeable of which in his case is shaking, particularly of his left hand. The drugs can work well for elderly people affected with the disease, replenishing the dopamine that the body has nearly ceased producing.
The drugs, however, lead to the eventual cessation of dopamine production and require ever higher and more closely-spaced dosages to achieve the desired effect of facilitating nerve connections. That long-term tolerance to the treatment means that medication is not as attractive an option for those who get the disease at a relatively early age. Eventually, he says, the drugs cease to work at all, at which time the disease has progressed much more quickly than it would have without treatment.
Riding around Lake Como, Phinney could sit in on the group and conserve energy, making it almost entirely around the perimeter of the lake where he spent many of his 7-Eleven days. Phinney still looks good on the bike, but his left arm is now bent more than his right. Pedaling requires great effort, because his left leg cannot move the pedal across the top of the stroke, so his right leg “does 70 percent of the work,” he says.
This leads to cramping and discomfort in his right leg. Still, Phinney is incredibly strong mentally, and he motored along in the group almost all of the 100-mile circuit of the lake.
The quality of Phinney’s days partially depends on how well he sleeps at night. The shaking of his arm can easily wake him as often as 50 times per night, he says, resulting in exhaustion in the morning. But when he gets a good night’s sleep, he feels much stronger and can accomplish much more as well as display his natural wit, keeping everyone captivated and laughing with his stories of the Tour and other races, both major and minor.
Phinney felt strong this past fall, and “I had a great winter,” he says. “I did two 30-kilometer long ski skating days at the end of the season – that was totally unexpected because my right foot cramps so much that I can’t get it under myself to skate.”
But on a whim, he tried his 14-year-old son Taylor’s shorter, more stable skis and after initially cramping each time, felt better and better as he skated, enjoying a sport at which he excelled in the 1990s, winning races all over the USA.
Snow was abundant this year in northern Italy, near the family’s adopted home of Marostica at the foot of the Dolomites.
“It snowed so much that we were skiing over the roofs of houses,” he remarked. “I had the most perfect quintessential ski day – I skied up to the ridge from Asiago (yes, the place known for cheese is a cross-country skier’s dreamland) on perfectly groomed trail with only my tracks in a thin layer of new snow. The sun was setting around the edges of the clouds and it was snowing lightly; it was an epiphany moment.”
“I love it so much here,” he says, “I want to stay here forever.” Their children also thrive in Marostica, both enjoying school, having friends, and being soccer stars now that 10-year-old Kelsey has broken through the traditional Italian gender barrier and is excelling on a local boy’s team.
On to the Alps
After Lake Como, this year’s bike camp moved to Bormio in the Alps near the Swiss border to ride the legendary passes of the Giro d’Italia and to await the 87th running of the race with the young phenom Damiano Cunego at the helm. Exhausted from a rough night of sleep and the transfer up from Como, Phinney was not able to accompany much of the group on the climb of the Passo Gavia that afternoon, a pass he had not traversed since June 5, 1988, when he rode it in support of Andy Hampsten’s heroic conquest of the Giro that year.
However, the following day, Phinney did succeed in climbing to the summit of the Passo Stelvio, the highest pass in Europe and critical stage in a Bernard Hinault Giro victory.
“That’s the amazing thing about Davis and this terrible disease,” says Carpenter. “Yesterday, he was a wreck, and today he rode the Stelvio! Davis deals with it with grace and humor, but it pretty much sucks.”
“That was the hardest thing I have ever done,” said Phinney on the summit. That says a lot coming from a man who rode and faced so much hardship in numerous Tours de France as in other tough European and American races, being first to the line hundreds of times in the process. On the descent, Phinney was feeling good and descending so fast that he barely managed to stop in front of a road barricade hidden around a switchback (the pass was still closed to motorized traffic). He completely skidded through the tread of his rear tire, coming to a stop with his brake levers almost touching the red-and-white-striped barrier.
It was after this that Phinney discovered another limitation of his disease. If the tire fits very tightly on the rim, the shaking of his hands has progressed to the point that he cannot change it himself.
The following day, Phinney drove support as we rode up the super-steep Passo Mortirolo of Marco Pantani legend, descended it in the rain and hail, and rode up and over the Gavia from the direction of Hampsten’s win, staying just ahead of this year’s race back into Bormio in the process. If we’d been a little bit later, we would have been passed by Lance Armstrong on the Mortirolo, who had ridden over the Bernina Pass from Switzerland that morning to try it for the first time.
“I rode a 39 X 27,” he later told the Italian sports newspaper, La Gazetta Dello Sport. “That was the hardest climb I have ever done.”
Phinney was not up for the Mortirolo that day, but it was great to share it with him nonetheless, as we labored up its grade averaging over 10 percent for 13km (with parts kicking up to almost 20 percent) in a 39 X 25.
The Carpenter-Phinney Giro Bike Camp was, as always, very memorable, but it is particularly so because we got to share it once again with Phinney, and days of riding with him are precious. No one can really predict how much longer he will be able to ride and ski and use his body in the ways it has spent a lifetime learning to do better than almost anyone else, so we treasure every minute.
The DPF was created by a former camp client and Bike shop owner, Kathy Krumme. In conjunction with Phinney and Carpenter, Krumme started the DPF this past fall. As the couple had been forewarned, having a foundation can be incredibly consuming of time and energy, but both find it very rewarding. “It keeps us networked with early-onset Parkinson’s folks who can assist Davis as well as support others with the disease,” says Carpenter.
The foundation’s kickoff event, “The Sunflower Revolution,” is scheduled for July 30 and 31 in Cincinnati, Ohio. The two day event will include a dinner with live auction and a ride the following day.
“Very few people know that Cincinnati is really an amazingly good cycling city,” says Carpenter. Look for more information at www.davisphinneyfoundation.com.
In conjunction with the event, the foundation is also now offering tickets for a chance to win a special edition Serrotta Sunflower Revolution Ottrott, valued at $9000. The $100 raffle tickets will be soldon the foundation’s website, through the mail, and at the SunflowerRevolution event. Davis Phinney will draw the winning ticket after theSunflower Ride an Saturday July 31, 2004. There will be a limit of500 tickets sold, ticket are $100 each..”
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