Living with Parkinson's Disease: The Davis Phinney Story
.png)
A Childhood Spark: Discovering a Dream
Sometimes one moment can change the entire course of your life. That’s exactly what happened to Davis Phinney. Growing up in Boulder, Colorado, Davis always loved the outdoors, but everything shifted the day he watched the Tour de France for the first time. Something sparked. A simple moment of curiosity became the start of a dream—one that quickly grew into a fierce, focused passion: to one day cross the Tour de France finish line first.
Training Like Thor: The Rise of a Cycling Champion
Once that dream took hold, Davis dedicated himself completely. He trained day in and day out, year after year, earning the nickname “Thor” for his power, drive, and thunderous strength on the bike. By 1977, his hard work paid off when he became the Colorado State Junior Cycling Champion.
On the road to the 1984 Olympics, Davis met fellow cyclist Connie Carpenter. They fell in love, married in the fall of 1983, and continued to train side by side. By 1984, Davis was a standout member of the 7-Eleven Cycling Team, which went on to win the Bronze Medal at the Summer Olympics. Just a few years later, in 1986 and 1987, he claimed stage victories in the Tour de France—the very race that first sparked his childhood dream.
In 1988, Davis began a career in network broadcasting while still competing, and life seemed full and bright. He and Connie welcomed their son, Taylor, and in 1991 Davis won the title of Professional Road Race Champion. Their daughter, Kelsey, was born in 1995, adding even more joy to their growing family.
A New Challenge: Early Signs of Parkinson’s
After retiring from competitive cycling, Phinney transitioned into a career as a sports marketing executive. But during this chapter of his life, he began noticing subtle changes—first in his body, then in his thinking. His left foot cramped constantly whenever he tried to run. Cycling was easier, but the problem persisted anytime he pushed himself physically. Then one day, his little finger began to twitch. That was the turning point. He realized this wasn’t a simple physical therapy issue anymore—there might be something deeper, something neurological.
In 2000, at just 40 years old, Phinney was diagnosed with Parkinson’s disease. He later reflected on how hard it was to get an answer:
“It was difficult to get a diagnosis because at that time there just weren’t young, athletic people like myself being diagnosed with PD. Everyone looked at me and said, well, he sort of presents like he has Parkinson’s, but that couldn’t be possible. I went through a whole spectrum of medical professionals, basically seeking an answer, before someone finally gave me Sinemet and said, ‘Why don’t you try this and see how it works?’ And it was like—oh yeah—relief.”
Facing the Diagnosis: Acceptance and Adaptation
After his diagnosis, Davis immersed himself in researching Parkinson’s disease and quickly learned there was no cure—and that the condition would continue to progress. As he put it, the outlook felt “pretty grim for a guy who survived on being physically fit and active and productive.”
While trying to make sense of his new reality, his first instinct was to hide the symptoms. As a lifelong athlete, he believed he could outsmart the disease or find workarounds through sheer willpower. He later reflected,
“I felt like I was smarter than this disease and I could figure out some workarounds with it, but that proved ultimately not correct. And so I became somewhat of my own worst enemy—I wasn’t doing myself any favors by not taking my meds correctly. I kept thinking, ‘I can beat this thing,’ and I was just so stubborn about it.”
Everything began to shift once he found the right neurologist—Dr. Helen Brontë-Stewart at Stanford.
“She was just the right person with the right vibe. She came from an athletic background—she was a ballerina—and she got me thinking about doing things more correctly.”
At the same time, Davis was grappling with how to explain his diagnosis to his children. Taylor was 10 and Kelsey just 5. Staying true to his nature, Davis chose to focus on the positive.
“I used Parkinson’s as an excuse to spend more time with my kids. Originally they viewed it as not such a bad thing.”
Turning Adversity into Action: The Davis Phinney Foundation
His search for meaning and direction eventually led him to create the Davis Phinney Foundation for Parkinson’s in 2004. Its mission: to support and fund innovative research aimed at improving the quality of life for people living with Parkinson’s. For Davis—always goal-driven—it became the perfect outlet for his energy and determination.
He noticed that many people with Parkinson’s felt stuck waiting for a cure.
“People would tell me they were just waiting for someone to cure this disease. And I recognized that waiting was too passive. With passivity comes more decline. So I felt the best thing I could do was use my voice—not in the sense of finding an overall cure, but in helping people feel better right now. And that’s where our foundation started.”
Over time, the Foundation expanded beyond research to become a leading source of education, community programs, and practical tools that help people with Parkinson’s take action to live well today.
Davis explains,
“I realized what helped me most was shared information—not just the basics of exercise and diet, but details about medication management and a broad variety of information. The more we can dispense information, the better off our community will be.”
Today, the Foundation reaches more than 500,000 individuals and families each year through online resources, events, community programs, and more—continuing Davis’s mission to help people with Parkinson’s live well now.
Innovative Solutions: Deep Brain Stimulation
By 2012, the symptoms of Parkinson’s were returning. Just as his son Taylor was preparing for the Beijing Olympics in late 2008, Davis decided to undergo deep brain stimulation (DBS) in hopes of regaining control over his worsening motor symptoms. At Stanford University Medical Center, neurosurgeon Dr. Jaimie Henderson implanted two electrodes—each 2.5 inches (64 mm) deep—into either side of Davis’s brain, powered by a pacemaker placed in his chest.
Because DBS requires real-time feedback, patients remain awake during the procedure to ensure precise placement. When the electrodes were in position, Dr. Henderson said, “OK, let’s try a little current now.” Davis recalls what happened next:
“All these muscles that had been at war with each other suddenly were at peace. It was like Armistice Day. I thought, ‘Oh… my… god!’ I looked at my wife and she was crying. She said, ‘I haven’t seen your smile in a year!’”
Living Well with Parkinson’s: Daily Strategies and Mindset
The results were dramatic. Four years after surgery, Davis no longer struggled with the severe shaking he once had. But Parkinson’s continued its course, and his balance slowly began to decline. So how does he stay motivated in the face of a progressive disease?
Davis answers with honesty and hope:
“It’s hard to think of Parkinson’s as something you’re overcoming, because it’s the stemming of decline. But there is a day-to-day sense of hope—of overcoming this disease enough to be happy and live a fulfilling life.”
He encourages others to take a proactive approach:
“You’ve got this challenge ahead. It’s going to be years and years. The best thing you can do is become proactive on your own behalf—start building a healthcare and support team, and look for ways to engage yourself physically, emotionally, and mentally.”
He stresses the importance of habits and momentum:
“Find something you enjoy enough to do daily. Remember, something is always better than nothing. It doesn’t have to be one thing—it could be five different things. People often give up because they don’t have the will to struggle with the disease. But you’ve got to get moving. If you don’t move, you stop. And that inertia becomes harder and harder to overcome.”
On the hardest days, he reminds himself why action matters:
“Even if it doesn’t feel like this will make today better, it will for sure make tomorrow better.”
Above all, Davis believes passivity is the enemy:
“You cannot afford to be passive with Parkinson’s—whether it’s managing your day-to-day or communicating with your healthcare provider. Don’t leave a challenge without at least one thing you can take ownership of and stick with. That alone will start to change your health and your life.”
His final message is one of possibility and empowerment:
“The challenge is making every day great. And if you can do those things, you will be living long and well with Parkinson’s. It is possible to live well with this disease—and that’s the takeaway.”
Legacy of Courage and Impact
Today, Davis continues to celebrate daily victories, inspire others by living well, and share his message of optimism with those who need it most.
“Winning with Parkinson’s, to me, means having more good moments in any single day than bad moments—being able to get out for a bike ride or walk, enjoying a meal with family and friends. If you really pay attention to these moments, they can magnify your sense of wellbeing, instead of letting the disease minimize it by focusing on the negative.”
He and Connie have returned to Boulder, Colorado. Their children, now grown, remain actively involved with the Davis Phinney Foundation in various capacities.
“Even 20 years post-diagnosis, I still ebb and flow with acceptance. That doesn’t mean I can’t focus on living well and doing my best, making every effort to enjoy life. Full acceptance of this disease is still something I struggle with.”
Davis emphasizes that living with Parkinson’s requires courage—and living well requires even more:
“You have to be willing to step outside your comfort zone, even within the confines of the disease. You can regain and reclaim some of your function, but you have to put yourself out there. If you let it, the disease can come in like a cloud, but the key is to look past the cloud and focus on the good elements in your day. Exercise is part of the plan, but it’s not the whole plan. Introspection and mindfulness are essential—paying attention to what’s happening right here, right now, and enjoying those moments, looking for the positive instead of the negative.”
Davis’s courage and dedication to helping others were recognized in 2015, when he received the White House Champions of Change Award for his impact in the Parkinson’s community.