When you go from being one of the country’s most successful cyclists to a mere mortal struggling with a disease that makes even talking tough, it can be difficult to find hope.
Olympic bronze medalist Davis Phinney was diagnosed with Parkinson’s seven years after he retired from professional cycling. He was just 40 and the father of two young children when symptoms he’d struggled with for years, but dismissed as unrelated issues, finally forced him to see a doctor.
“Honestly, most of us know Parkinson’s as a disease of older people,” said Davis’ wife, Connie Carpenter-Phinney, also an Olympic cycling medalist. “It certainly was not something I anticipated for my 40-year-old healthy, active, and one of the strongest men in my life. At that age, it was very shocking.”
She said all of the small issues Davis had dealt with for years suddenly were explained as symptoms of a debilitating disease.
“A diagnosis doesn’t come without a long run up of symptoms that you can’t really explain,” she said. “It’s not just about tremors.”
She said he had a dozen small symptoms, including trouble controlling the volume of his voice, cramps in his left foot, and extreme fatigue.
But it wasn’t until he suffered tremors so severe he couldn’t hold the microphone that he sought medical help.
Overwhelmed with questions and uncertainty, Carpenter-Phinney said she believes it was their life circumstances that kept them moving in a positive direction.
“I think in our case, being as young as we were, it helped that we had young children that needed our full attention,” she said. “We had a lot to wrap our minds around, but we also had a huge reason to live well.” Almost immediately the questions go from what is going to happen to my body to how can I live a quality life.
“How do we wrestle with this beast?” she said, adding that living with an incurable disease like Parkinson’s is very different from living with a terminal illness. “This is a disease you’re going to live with for a very long time. You really have to make peace with it.”
Instead of “fighting with Parkinson’s” and it’s debilitating symptoms, patients, and their families are better served to find new ways to live a full life. Their experience and the efforts of a friend on their behalf led them to create the Davis Phinney Foundation, which offers programs, research and resources to those dealing with the disease. They host Victory Summits for patients, their families and medical professionals around the country, and for the first time, they will be coming to Utah on Friday, Feb. 26, at the Sheraton Hotel.
The event is full, but there is a waitlist, and there are volunteer opportunities still available. For information contact firstname.lastname@example.org.
There are a number of seminars scheduled, including one in which Carpenter-Phinney talks about caregiving and another about how to exercise and remain active with Parkinson’s.
“Exercise helps everybody with Parkinson's,” she said. “That’s something we see anecdotally, and there is also scientific evidence. Exercise really helps, especially in a body undergoing a siege.”
She said some patients may not be aware of the newest science and of the resources available to them. With information, new opportunities can open up for patients. For example, many patients find movement much easier when they simultaneously listen to music. She said the brain is constantly giving scientist clues about ways to “liberate” those struggling with Parkinson’s.
“You just have to find ways, tweak your system, your medications, with exercise, whatever is available to find ways to live well again,” she said. “That’s the challenge.”
The danger for a lot of patients is that they are tempted to withdraw from their former lives because their symptoms make them feel conspicuous and self-conscious.
“It’s a very isolating disease,” she said “With tremors, you feel like people are looking at you, you can’t get your words out fast enough, you can’t make change - just simple things you took for granted, and now you can’t do them, so you tend to avoid them.” So the goal of the Davis Phinney Foundation and the Victory Summits is to keep patients and their families engaged in the world.
“It’s a very humbling disease,” she said. “(Davis) withdrew for a while.”
But eventually, he realized not only could he had more to give — and learn.
“I think it’s human nature to live with hope,” Carpenter-Phinney said. “So that’s working for us. But it’s also very easy to lose hope.”
Especially for those relegated to the shadows. “We just try to introduce people to information, give them options so they can maximize their lives.”