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For the Phinney Family, a Dream and a Challenge

By Juliet Macur

26cycling 190 For the Phinney Family, a Dream and a Challenge

Carmel Zucker for The New York Times Taylor Phinney, right, with his father, Davis, a top cyclist in his prime who is now battling Parkinson’s disease.

BOULDER, Colo. — Like any proud father, Davis Phinney marvels at the man his son has become.

It is not because Taylor Phinney juggles his senior year’s studies at Boulder High School while training as an elite cyclist. Or because he speaks fluent Italian. Or that he is, according to his coach, Neal Henderson, “physiologically phenomenal,” a perfect combination of his parents.

What makes Davis Phinney most proud is something more personal. “To get the benefit of me,” he often tells his son, “you have to be somewhat responsible for me, too.”

And he has been. Nothing has made Taylor, 17, grow up faster than watching his father’s body decay.

dad190 For the Phinney Family, a Dream and a Challenge

John Pierce/PhotoSport International Davis Phinney was nicknamed Thor by his cycling teammates.

Phinney, 48, was a brazen sprinter and the star of the 7-Eleven professional cycling team in the 1980s and early ’90s. He was a risk-taker with beefy biceps, nicknamed Thor, the Norse god of thunder.

Now, he fights his stiffening body just to roll over in bed because of the ravages of Parkinson’s disease, an incurable neurological disorder that attacks a body’s mobility. He leans on his son, his daughter and his wife, Connie Carpenter, a two-sport Olympian. They help butter his bread, button his shirts and open his pill bottles.

In return, Phinney has put treating his illness, and his pain, on hold.

On Wednesday, Taylor will compete in the individual pursuit at the world championships in Manchester, England. He is tied for third in the overall world rankings and could earn a spot on the United States team for the Beijing Olympics by finishing seventh or better. If he wins, he will secure his place at the Games in August.

Whether Taylor talks about his Olympic dream or his family’s challenges, the philosophy remains the same.

“The difference is not accepting that you will lose, just deciding not to give up,” he said. He thanked his father for teaching him that.

Davis Phinney is in England for the championships, nine days before he is scheduled to have a brain operation to ease the symptoms of his disease. He could have had the operation sooner, but he wanted to watch his son and allow him to race with a clear mind.

“You have to wait until you’re really ready to have people drill holes in your head and stick probes in your brain,” he said. “I didn’t want to worry Taylor, or have it affect him negatively, and I know it would have, because that’s just the dynamic of our family.”

It Is in the Genes

mom190 For the Phinney Family, a Dream and a Challenge

Associated Press Connie Carpenter, Taylor’s mother, was a two-sport Olympian.

Championship DNA courses through Taylor Phinney’s 6-foot-4 frame.

His father remains the leader in race victories by an American, with more than 300. He was the first American to win a road stage of the Tour de France. At the 1984 Olympics, he won a bronze medal in the team time trial.

Taylor’s mother was 14 when she finished seventh in the 1,500-meter speedskating event at the 1972 Olympics. At the University of California, she became a national champion in rowing. She won the gold medal in the debut of Olympic women’s road cycling in 1984, 10 months after marrying Phinney.

Carpenter, 51, likes to say that she went fast — as a speedskater, a rower and a cyclist — because her mother could not. Her mother, Darcy Carpenter, battled multiple sclerosis while raising four children. She died at 55.

son190 For the Phinney Family, a Dream and a Challenge

John Pierce/PhotoSport International A month after first riding on a velodrome, Taylor won a national title.

“When you have a parent with a disease, I think it gets inside of you and changes you very subliminally,” Carpenter said. “My mother would look at me and say, ‘I don’t know how you do all of these extraordinary things.’ And I would think, how could I do these things? Me? My gosh, you are the one who is extraordinary.”

She sees that same brilliance in her husband, whom she coaxes out of the house for a hike or bike ride, even when he feels miserable. “Let’s just try,” she will say.

Friends and family call her “broad-shouldered Connie” because she seems to bear everyone’s burdens. She handles her son’s travel plans, fills out his drug-testing paperwork and accompanies him to races in China and Australia. She drives her 13-year-old daughter, Kelsey, to Nordic ski practice, then rushes home to cook.

“My sense is that Connie is the one that really knows what struggles are ahead and what life will be like down the road for Davis and her family,” said Ron Kiefel, a former teammate of Davis Phinney who remains close to the family. “She knows the potential end game, but she is not one of those people who crumples up and falls apart when there’s a challenge. She’s a superwoman.”

Her husband started an organization in his name, the Davis Phinney Foundation, and gives motivational speeches to Parkinson’s patients, pushing them to celebrate every victory, however small, like tying their shoes. The high doses of medication he needs to get through those talks cause side effects, like the involuntary swaying of his head. But he endures.

Carpenter senses that Taylor is inspired by his father’s determination to stay positive.
“It has shown him how much you can impact others and how cool it is to be known for something,” she said. “There’s a magic to that, and I do think it lights T’s fire.”

On a trip to the 2005 Tour de France, Taylor, then 15, fell in love with the family business. He needed only two years to become one of the world’s best track cyclists.

His first bike race was in 2006. Last year, he won the time trials at the junior road world championships. In October, a month after riding on a velodrome for the first time, he won the United States elite track nationals.

Excluding Taylor, the average age for the top dozen riders in the individual pursuit is 28. The cyclist in second is twice Taylor’s age. Surrounded by others with experience, he indeed draws motivation from his father.

“I remember him being very playful and fit all the time, so it’s hard for us to see him struggle the way he does,” Taylor said. “I know sometimes he wishes he could pull me up some hill, drop me at the end and sprint away, but there are little things he does for himself where he finds happiness. It makes me feel good for him to see my results, because I enjoy making him a little happier than he would be every day.”

The Onset of Parkinson’s
Davis Phinney always felt invincible.

But in his 30s, his left leg began to cramp and tingle. His left foot would go numb or drag. He was often exhausted and had difficulty concentrating.

Doctors suggested that his symptoms could be a result of a bike crash in 1988, when he flew through the window of a team car. Or it could be a brain tumor.

About 1.5 million Americans have received a diagnosis of Parkinson’s disease, but only 5 to 10 percent learn of it before age 40, according to the National Parkinson Foundation. Davis Phinney was among the few.

Here was a handsome, outgoing pitchman for cycling in the United States who had to quit his job as a TV announcer for bike races because he could no longer hold a microphone. He was facing a disease that would steal his independence. His son was 9, his daughter 6.

“Back then, the kids were more concerned about having mac-and-cheese for lunch; they didn’t think their father was different than anyone else’s,” Carpenter said. “For us, it was devastating. I don’t think anything prepares you for the news that you basically aren’t ever going to get better.”
Phinney had no place to hide. In public, people sometimes thought he was drunk because he moved slowly and slurred his words. At home, he felt uncomfortable, his body turning rigid as if locked in a suit of armor and his left hand shaking so violently that he often sat on it to keep it still.
“It’s miserable, like the permanent scratching of fingernails on a chalkboard,” he said.

In 2002, the family decided to start over, trading life in Colorado, in the foothills of the Rocky Mountains, for one in Italy, in the foothills of the Dolomites.

They relied on their Carpenter-Phinney bike camps to pay the bills as they settled into a house in Marostica, Italy, a medieval town with cherry trees, green hills and vineyards. There, the family worked together to help Phinney manage his disease.

Carpenter did not mind running the family’s camp and the house while Phinney spent time with the children. She knew they were on the clock.

Phinney was changing fast. His face took on a mask-like expression. He fell into depression, embarrassed by the stares, exhausted by the trembling. He began to take medication but knew its effectiveness would diminish over time.

“It’s very easy to disappear into your own personal closet and disappear from society,” he said. “I know that feeling acutely.”

When home alone, his wife would gaze from a rear window at the rolling hills. An olive tree was in the backyard, and a small church, St. Agatha’s, was in the distance. She often painted to ease her mind.

“There’s a lot of sadness to see your best friend go through something like this,” she said. “It can be really painful. It would be foolish to think that I didn’t lose something, too. It isn’t fair.”

Trying to Win Back a Life
In January, Phinney spoke to Parkinson’s patients at a speech therapy clinic in Boulder.
“The disease does strip some of our basic abilities away,” he told them. “But that doesn’t mean we have no control over it.”

Parkinson’s often softens a person’s voice, so he encouraged them to reconnect with people by speaking louder, making eye contact and forcing a smile.

“It’s just those little bits of joy that make you feel better,” he said, as audience members wiped away tears. “I know it’s just so easy to not do that, but you have to try.”

Though he has skipped most of Taylor’s far-off races because the travel is so arduous, Phinney said he never would have missed seeing his son at the world championships.

Then, whether Taylor wins or loses, Phinney will finally have his brain surgery.

Next Friday, he will undergo deep brain stimulation, an effort to control some of his symptoms. Electrodes will be placed in both sides of his brain. A pacemaker-like device will be put in his chest.

Dr. Jaimie Henderson, a neurosurgeon at Stanford University Medical Center who will perform the operation, said he hoped Phinney would focus on his recovery.

“I know Taylor is doing great things, but sometimes you have to put everything else aside and start worrying about your own health,” he said.

In rare cases, these operations can lead to coma and death, Henderson said, though he expects Phinney’s to go smoothly. He said this could allow Phinney to take less medicine. It could, he said, “give him his life back.”

The operation could result in slurred speech or trouble remembering words. Phinney admits to being scared, though he has not yet told Taylor many of the details.

In August, if all goes well, he intends to be in Beijing, a new man watching his son ride fast, as he once did.

“I could easily slip into a very, very dark place with everything I’ve lost, so I have to focus on the pinpricks of light to stay positive,” he said. “But with Taylor, it’s easier. I just look at what he has been doing, and I’m instantly connected to a magnificent source of energy.”

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