Every victory counts
Tour de France cyclist and Parkinson’s advocate Davis Phinney encourages PHHP Class of 2012 to celebrate life’s small accomplishments
By Jill Pease
The symptoms started in his 30s — fatigue, muscle weakness, a change in gait. Davis Phinney assumed the aches and pains could be chalked up to the punishment he had put his body through as a professional athlete, but in 2000, Phinney, then 40, received a surprising diagnosis: young-onset Parkinson’s disease.
From the late 1970s through the early 1990s, Phinney achieved 328 race wins, more than any other American cyclist. His victories include multiple Tour de France stage wins and a bronze medal in the 1984 Olympics. Following his retirement from racing in 1993, he was a well-known sportscaster for ABC, CBS, NBC, ESPN and OLN networks before Parkinson’s disease cut his TV career short.
After learning he had Parkinson’s, Phinney struggled to come to terms with the diagnosis, a process he describes in his 2011 autobiography “The Happiness of Pursuit.” The gifted athlete, nicknamed Thor by his cycling teammates for his muscular build and sprinting ability, now faced the challenge of living with a progressive movement disorder. Eventually, the husband and father of two hit upon a philosophy that has become the motto of the Davis Phinney Foundation for Parkinson’s: every victory counts.
“I find one key to dealing with this chronic, disabling disease is choosing to focus on, to appreciate and, yes, to celebrate those smaller accomplishments, those little victories. And these I personally tally up on a daily basis,” said Phinney at the college’s convocation ceremony May 4.
“With Parkinson’s, a lot of the difficulty is just getting through the day with basic tasks,” Phinney said.
Small victories may come in the form of being able to button a shirt, make a cup of coffee or wash the dishes without breaking a dish.
A few years after his diagnosis, Phinney began to consider how he might offer hope to other people with Parkinson’s disease. He founded the Davis Phinney Foundation in 2004 to help people with Parkinson’s disease live well today.
Phinney gives some advice to others with Parkinson’s in his autobiography:
“Move your body! Meet some friends. Think positively. Focus. Be present in those brief, shining moments.” And if you are tremoring and someone stares, “whose problem is that?”
The Davis Phinney Foundation offers free symposia and webinars for people with Parkinson’s, a manual with essential information on the disease and advice for self care, and a continuing education program for health professionals. The foundation has also awarded more than $1.2 million for Parkinson’s disease research.
At the UF College of Public Health and Health Professions, faculty members are conducting several Parkinson’s disease studies. Research topics include swallowing disorders, language use, motor behavior problems, cognitive changes and safe driving.
Dawn Bowers, Ph.D., a professor in the department of clinical and health psychology, has received a new grant from the National Institute of Neurological Disorders and Stroke to support her ongoing studies of the emotional processes of Parkinson’s disease.
“Emotional changes, including apathy and depression, affect up to 80 percent of patients with Parkinson’s disease and have significant health and social consequences,” Bowers said.
Some people with Parkinson’s disease are more apathetic, have less initiative and less “get up and go,” Bowers said. In previous studies, Bowers and her colleagues have shown that this apathy syndrome may cause people with Parkinson’s disease to be less reactive to images designed to elicit an emotional response. Their “emotional blunting” is not caused by depression, medication side effects or cognitive deficits. The exact reason is unknown, but experts believe that reduced levels of the neurotransmitter dopamine may cause changes in the amygdala, an area of the brain responsible for prompting emotional reactions.
In the new study researchers will investigate if patients with Parkinson’s disease can benefit from techniques designed to improve their emotional reactivity.
“Emotional blunting and lack of initiative can have detrimental effects on relationships with family members, friends and general health,” Bowers said. “Anything we can do to improve engagement and initiative will hopefully improve quality of life for our patients and their families, including physical and emotional well-being.”
In an effort to improve his quality of life, in 2008 Phinney underwent the procedure known as deep brain stimulation in which a pacemaker-like device is implanted into the patient’s torso and attached to wire leads that send electrical impulses to the brain. While it is not a cure for Parkinson’s disease, it can reduce the most severe symptoms, like tremor. In his remarks to the PHHP Class of 2012 Phinney described the moment when the device was switched on:
“That was a miracle. No victory was ever that sweet. I stand before you today electronically-powered and tremor-free. I owe a debt of thanks to my (health care) team, which is made up of caring, competent people. People like you.”