Hugh Carey / hcarey@summitdaily.com
Patti Burnett has been in Summit County since 1978. She was a ski patroller for 23 years at Copper Mountain, during which time she saved lives, skiied competitively, supervised other patrollers, worked in search and rescue and trained avalanche rescue dogs. Burnett is and was an iron woman of Summit County.
But then in 2013, Burnett started noticing a tremor in her hand. She saw a doctor, and got a diagnosis that threatened her life and lifestyle: Parkinson’s disease.
The neurodegenerative disorder primarily affects motor functions, disrupting and slowing down movement, balance and general muscle control over time. But Parkinson’s has a range of other effects that can’t often be seen from the outside, and Burnett emphasized that each person’s Parkinson’s symptoms is unique to the individual.
“I notice my temperature regulation is not as good as it used to be,” Burnett said, wearing several layers to keep the cold out despite being indoors. “My digestive system doesn’t work as well. It affects every muscle in your body. I have vision issues, my voice has been affected majorly. I don’t think I have the cognitive problems, but I’m a bit slower. Some days are slower than others.”
Parkinson’s is caused by the breakdown and death of neurons that carry dopamine in the midbrain. It can often be hard to diagnose due to a lack of a reliable test or easily traceable markers. The disorder gets progressively worse over time. There is no known cure, and treatment is still limited to mitigating or delaying symptoms.
“You can expect that you’re not going to get any better, just progressively worse, day by day,” Burnett said.
Despair would be an understandable reaction to a Parkinson’s diagnosis, but Burnett doesn’t work that way.
April is Parkinson’s disease Awareness Month, and Burnett hopes that people become more knowledgable about Parkinson’s, how it affects lives like hers, and the need for more resources and specialists to diagnose and treat the disease in the High Country.
Burnett is also an ambassador for the Davis Phinney Foundation for Parkinson’s, a foundation that focuses on improving the well-being of people living with the disease. The foundation wants those people to know that life with the disorder is still very much livable, and can be lived well.
“The Davis Phinney foundation a much more positive approach to Parkinson’s,” Burnett. “Their philosophy is that you count every victory, and that every victory counts. You live each day well.”
Famed American cyclist Davis Phinney, who was diagnosed with Parkinson’s when he was 40, saw that there were organizations dedicated to researching a cure and treatment for Parkinson’s, but not enough resources devoted to improving the lives of people living with it.
The foundation hosts educational, community and athletic events that bring people with Parkinson’s together, as well as provide guidance and tools on how to live better, keep in shape and mitigate Parkinson’s symptoms through positive action. The foundation also provides a wealth of literature on how people with Parkinson’s and their families can live well with their everyday lives.
The Copper Triangle alpine cycling classic, which takes place on August 3, is one of the foundation’s most important fundraisers. The 79-mile cycling event crests Fremont Pass, Tennessee Pass and Vail Pass for a total elevation gain of 6,500 feet. $5 of every entry fee goes to the foundation, along with fundraising donations from participants and sponsors. The event has raised $1 million for the foundation since 2006.
Burnett admitted that she was only able to do a leg of the Copper Triangle from East Vail to Vail Pass. However, just being able to do that much is one of the victories that she celebrates.
“I am extremely active,” Burnett said. “That’s probably the best medicine of all.”
As far as whether she’s concerned about the progression of her Parkinson’s and how things will work out, Burnett finds peace and joy in the everyday and lets that guide her life while advocating for people like her.
“I don’t know what my future holds,” she said. “Of course I fear about it. I think everyone does. You can have a car wreck, or something else. I focus on the everyday victories.”
To find more resources on living well with Parkinson’s or to make a donation to the Davis Phinney Foundation, visit their website at DPF.org. To register for the Copper Triangle alpine cycling classic, visit RollMassif.com/CopperTriangle.