Advocates work to ensure locals with Parkinson’s disease have the resources and support they need to thrive
Mary Schwab is a lifelong Coloradan who worked as an accountant and loves to explore Colorado’s scenic areas. She and her family lived in Arvada and owned a financial services business before eventually moving to Summit County.
On the weekends, Schwab and her husband would visit their second home in the Silverthorne area. Five years ago, the couple decided to make their go-to vacation spot their permanent residence.
It was around this time that Schwab was diagnosed with Parkinson’s disease. At first, she said she didn’t know her symptoms, which had started a couple of years prior, were something serious.
“I didn’t know they were Parkinson’s-related,” she said. “I was diagnosed four-and-a-half years ago, but I would say two years prior to that, I started having symptoms sporadically. But to me, it didn’t indicate I had some issue until I had started having tremors in my hands that were consistently there.”
According to the Parkinson’s Foundation, the disease is a neurodegenerative disorder that affects predominantly dopamine-producing neurons in a specific area of the brain. Common symptoms include tremors, rigid limbs and gait and balance problems, among others. The cause for the disease remains unknown, and there is no cure.
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April is Parkinson’s Awareness Month, and residents like Schwab and Patti Burnett are working to support local patients and caregivers as well as advocate on the state and federal level.
Burnett, who was a ski patroller for 23 years at Copper Mountain Resort before she retired, said she noticed a tremor in her hand in 2013, and that’s when her world changed.
Since her diagnosis, Burnett has become highly active in the Davis Phinney Foundation for Parkinson’s based out of Louisville, Colorado. While other organizations, like the Michael J. Fox Foundation, focus on finding a cure, the Davis Phinney Foundation helps patients with Parkinson’s learn to live and thrive with the disease.
During the month of April, Burnett, who is an ambassador for the Davis Phinney Foundation, worked on the Give a Dime About Parkinson’s campaign.
According to the Davis Phinney Foundation’s website, the campaign advocates to federal lawmakers about the disease and has three requests:
- To ban chemicals that have been linked to Parkinson’s, like paraquat, core purifiers and trichloroethylene.
- To make telemedicine a permanent part of Medicare.
- To have the National Institute of Health allocate more funding toward Parkinson’s research.
Burnett said there are other ways to contribute to Parkinson’s research, too. She frequently participates in studies hosted by the Michael J. Fox Foundation and said those who do not have the disease are always needed as a control group. For more information on how to participate in a study, visit the foundation’s website.
For those who have the disease, or for caregivers or partners who are looking for support, Schwab recommended they join the local support group that meets at 10 a.m. on the third Friday of each month.
“It’s really important for a person with Parkinson’s not to get isolated because you need the social contact, and you need to be able to do things with people, whether they are people with Parkinson’s or not,” Schwab said.
For a complete list of support groups, Schwab recommended individuals check out the Parkinson’s Association of the Rockies organization, which frequently hosts events and programming, and has a complete list of support groups held throughout the state.
If there’s one thing Burnett wants others to know about those with Parkinson’s, it’s to still think of them as human beings with a future.
“One of the most important things is to realize that even if you have a relative or a friend or co-worker who has Parkinson’s, realize that they are still the same person,” she said. “I think sometimes people write you off as you don’t have much of a future. That’s not the case. Even though I have Parkinson’s, I’m still Patti Burnett.”
• About 60,000 Americans are diagnosed with Parkinson’s disease each year.
• More than 10 million people worldwide are living with Parkinson’s disease.
• Men are 1.5 times more likely to have Parkinson’s disease than women.
• Medications for Parkinson’s disease cost an average of $2,500 per year, and therapeutic surgery can cost up to $100,000 per person.
Source: Parkinson’s Foundation
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