When my wife was misdiagnosed with Parkinson’s, we struggled to find support and reliable information about the disease. After two months and countless inquiries, we finally found three local support groups. At the first meeting, we met two other couples. The second meeting had no other attendees besides us. The third group we joined, however, had twelve participants and was led by an experienced facilitator with over a decade of running support groups. Her knowledge and guidance proved invaluable, marking the beginning of our Parkinson’s journey.
The following spring, we attended a Parkinson’s event we saw advertised. To my surprise, over one hundred people were there, making it the largest gathering of people with Parkinson’s I had seen. But something did not sit right. Three issues stood out to me: the absence of participation from local healthcare networks, an overall lack of attendees considering the population of our city, and the fact that the attendees present did not reflect the demographics of our community.
This experience sparked a decision to come out of retirement and start researching Parkinson’s prevalence and related statistics. Leveraging my professional background, I accessed U.S. Census data and began overlaying known Parkinson’s incidence rates. I quickly discovered that the Michael J. Fox Foundation had published Parkinson’s incidence data for ages 40 and 80. Using ChatGPT, I extrapolated estimates for the missing age brackets—50, 60, and 70.
I wondered: How accurate were my findings? In a conversation with a healthcare provider, they inadvertently shared the number of Parkinson’s cases in their Epic System database. To my astonishment, my projections aligned with their data within 1%. This validation gave me confidence to dig deeper, and the insights I uncovered raised critical questions.
1. Who is willing to drive over an hour to attend a support group?
U.S. Census data revealed our local market area covered 1,453 square miles. This highlighted the need for more geographically dispersed support groups. Places where seniors naturally gather, like community centers, may serve as ideal locations.
2. Who can afford to give up a day’s wage to attend a support group?
Accessibility is key for support groups to thrive. Evening meetings can make it easier for people still working or those with limited daytime availability to attend.
3. How do we raise awareness about Parkinson’s support groups?
Parkinson’s needs to come out of the shadows. Flyers, word of mouth, and a visible presence in the community can help. Potential locations for promoting groups include libraries, pharmacies, grocery stores, and houses of worship. Building strong relationships with healthcare networks is equally crucial.
4. How do we reach minority communities?
Reaching minorities requires deliberate effort and outreach strategies. This is a work in progress.
Making Data Accessible
You do not need a background in statistics to begin this work. Websites like censusreporter.org simplify access to U.S. Census data, presenting it by zip code, city, or state. The site breaks down information about age, income, race, and other factors in an accessible format. Upon request, I can share an Excel spreadsheet with general statistical values to generate Parkinson-specific insights for your community. What you choose to do with the data is up to you!
This journey has taught me that addressing the challenges of Parkinson’s support requires creativity, persistence, and collaboration. Together, we can make a meaningful difference for those affected by this disease.
