Empowerment Through Participation: A Parkinson’s Patient Shares His Advocacy Story

By Rachel Minnick

When Don Simmonds was diagnosed with Parkinson’s Disease at age 73, clinical trials were on the forefront of his mind. Upon his first meeting with his specialist, Dr. Goetz suggested that Don would be a good candidate for a clinical trial. A quick exchange with his wife Noreen made the decision to participate clear – “she said, ‘if you’re not going to do this, we’re going to have a talk,’” he said. “I didn’t want to have a talk so I signed up.”

Don describes Parkinson’s as a “highly individualized disease” – people with the disease can experience a broad range and severity of symptoms, leaving a lot to still be learned by doctors and scientists. Don is happy to step up and be part of that movement toward new treatments and a cure, saying it’s “the least [he] can do,” especially because the slow progression of his disease makes its effects “minimal” on his daily life.

Don feels empowered to do his part in the Parkinson’s research arena by participating in clinical trials. If he didn’t, he says, then who would? He shared a shocking statistic that resonates with our work at CISCRP; only 1% of Parkinson’s patients participate in research, he tells me. “I’m happy to be part of the 1%,” he says. “I may not be part of the wealthy 1%, but it’s this that really matters to me.”

And being part of clinical studies doesn’t just benefit the research community. Right now, Don is taking part in a 3-year study on cognition in Parkinson’s Disease patients, a topic that’s fascinating to him as he enters his final year in the study. “I’m curious to see my results. I feel pretty sharp so it will be interesting to see if I’ve lost some cognition during the past few years.”

Aside from his role as a clinical trial participant in more than 7 studies, Don does even more to support research by volunteering as an advocate for the Parkinson’s Disease Foundation (PDF).

Shortly after his diagnosis, a chance to complete training and become a PDF Parkinson’s Advocates In Research (PAIR) member provided him the unique ability to connect with other People with Parkinson’s across the United States and spread information about the disease with others in support groups and in public places like hospitals and libraries. A minister in his younger life, Don enjoys the opportunity to speak out about important issues and help those who share a similar struggle.

Don – with Noreen by his side – does his important work in his local Chicago area and around the country. They attended the World Parkinson’s Congress in Portland, Oregon in September, and Don has shared his story at numerous meetings and events, including CISCRP’s AWARE for All Chicago program in 2015.

Don hopes to keep “pitching in” and doing what he can to support Parkinson’s research. “It’s rewarding,” he says, to know that just one person can make a difference – for the advancement of medicine and for the millions of other People with Parkinson’s who benefit.

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