Margaret Preston’s relationship to her dad used to be “pretty standard.” She was the youngest of three, making her, as the baby, the prime recipient of her parents’ attention. Growing up, her dad took her to swimming practices and soccer games and coached her basketball team with “tough love,” the kind of love, she said, that “didn’t coddle but challenged us to be the best we could.”
By the time she grew up, got married, and had kids of her own, she got to see her dad naturally step into his grandfather role, “spoiling the kids with lots of candy.” Everything seemed “normal,” she said. “We didn’t think anything was on the horizon.”
“We All Had a Pity Party”
Margaret didn’t know a lot about Parkinson’s. She had heard of Michael J. Fox and Muhammad Ali, but these were distant stories to her. Her mom, however, had an inkling. She had been watching Margaret’s dad, Gary, and noticed that something felt off. She gave him a gentle nudge to see his doctor.
When Gary was eventually diagnosed with Parkinson’s, he didn’t tell anyone beyond his wife. He didn’t know what to do next or how to take action. Instead, he waded in the news, allowing himself time to process. Once he had digested it, he and his wife sat their three kids down and, jointly, shared the diagnosis.
“At first,” Margaret said, “we all had a pity party. We felt sad and we let that be because that’s part of the process.” They allowed themselves to feel the full weight of it, to be in the uncertainty and the anger of receiving an unexpected and unbidden diagnosis.
But Gary rarely takes things sitting down. A former Richmond, Virginia executive known for launching business startups, Gary has always “done everything 110%. Nothing is half-hearted with him,” Margaret said. His pity-party was brief; a few weeks after he was told he had Parkinson’s, he was ready to jump in head first and figure out what to do with this new diagnosis.
Powering Over Parkinson’s
The more Gary and his family dove into their research of Parkinson’s, the more they realized how much was lacking in their Virginia town: a lack of community, of support, of wellness resources. This was the genesis of Power Over Parkinson’s, or POP, a 501(c)3 foundation that supports the use of exercise and wellness to reduce the symptoms and slow the progression of PD and other neurogenerative diseases.
“Within six months of his diagnosis,” Margaret explained, he felt a desire “to do something about the lack of local support.” In fact, before they even came up with a name for their eventual organization, they knew they wanted it to “pop.” “My dad is a lifelong person who exercised and he wanted something to resonate with people and get them motivated to know they can power over it. Even after a diagnosis, they still have their pop. They still have their power. They still have a sense of optimism and excitement.”
They decided to start small, with social activities like bowling that brought together local people with Parkinson’s and their families. “We wanted to dip our toe into forming community.”
Discovering Their PD Family
As an adult child, Margaret insists that, initially, it can feel very isolating: “You don’t know where to find other people with PD. You don’t know who else in your town may be silently wading through a diagnosis, too.” She wondered who else understood what she was thinking and feeling. “When you meet other adult children, there’s a positivity that develops because you naturally get one another. You share what your parent was like pre-Parkinson’s, all the positive memories. You immediately share a bond.”
In fact, Margaret believes that being in community with other adult children, care partners, or people living with the disease is a powerful way to get informed. “The best way to learn is to be within the community. Adult children or care partners can read a ton, but you don’t truly understand it until 20 people with PD are in front of you. I got to learn so much from these people through talking, listening, hearing about their symptoms and how they manage them.” The POP gatherings came to be a place not only of social connection, but valuable education. She started to see how people with Parkinson’s and their loved ones, when brought together, were able to leverage each other’s insights, which was crucial for day-to-day support in between their neurologist appointments which only occurred every 3 or 6 months.
Finding Hope in Each Other
Eventually, the social activities expanded into a full commitment to promoting exercise. “Generally, exercise is not my favorite thing,” Margaret said, laughing. “You just have to get it done.” At POP, we have our HEAT program, where participants can exercise together three days a week at a local gym. The optimism in our program doesn’t really happen when you’re on the rowing machine.” When you’re rowing, you’re just sweating it out, trying to get through it. “The optimism comes when you’re there, seeing one another in person, everyone cheering each other on. The optimism comes when you share stories pre- and post-class about Parkinson’s or about, ‘Did I tell you: my grandchild is in town?’ The optimism lies in community.” When you exercise together, you not only mitigate your symptoms and improve your wellbeing, you cultivate a support group to lean on.
Margaret believes POP is tapping into a larger shift in Parkinson’s care. “Wellness, exercise, and community are no longer ancillary to care; they’re a big part of it. Care has changed so much over the last 20 years. Now it includes mental health associated with the disease. People are realizing that camaraderie and community support is just as important as taking your levodopa or medication every day.” We are wired to connect, and connection makes us more resilient.
Choosing Gratitude
When I spoke to Margaret on Zoom, I could feel her enthusiasm. “We’re naturally positive people in our family,” she said. “Baseline, we run with a sense of gratitude.” She believes this gratitude is what has fed POP.
“Recently, we had a person with Parkinson’s come out to our social event at the driving range. He told us he hadn’t swung a golf club in five years”–but because all POP’s social events work with local businesses to the shut the whole place down and create a safe space for people living with the disease to have fun and try new things, this participant felt ready to try his hand at golf, again. “He did it, and he did it well. We have care partners thank us all the time because they’re really on the ground every day working with their loved one.” They see the difference being in community and exercising and returning to old beloved activities makes. It’s in moments like these that Margaret is glad her family runs with a baseline of gratitude: “It reminds me that if we’re helping even one person, we’re doing more than if we just sat around and continued our pity party.”
Gary goes so far as to tell people he feels lucky he has Parkinson’s. He says it has given him the opportunity to learn about the disease and help other people. It has given him renewed meaning.
Every year on the anniversary of Gary’s diagnosis, he throws a party. It’s a testament to his attitude in life, his desire not to wallow in the bad but find gratitude everywhere. “We took something that wasn’t so positive and turned it into a party.”
Unexpected Blessings
Today, Gary is Chairman of POP and Margaret is its President. It’s a family affair. “The biggest silver living in his diagnosis,” she said, “is that we’re doing things we never thought we’d do together. We’re having these really neat experiences sharing our world with others and listening to them.” In running POP, she and her dad now speak several times a day: “We brainstorm together, we throw spaghetti on the ceiling to see what sticks, we laugh.”
What Margaret loves most about her dad is his humor, the way he never takes himself too seriously, keeping life in perspective. “His attitude is something I hope to pass on to my kids.”
Through navigating the unexpected with her dad and building a proactive organization around it, Margaret has learned that she’s never too old to learn something new. “I feel like I’m learning every single day.”
Taking a Chance
Having the courage to get out to a social event or try a new exercise routine is not easy, especially after a PD diagnosis, but Margaret’s best advice is to “come out, anyway.” “Come out to our events or your local events that get you out meeting other people. No one says you have to jump into the deep end of the pool because it could be cold and overwhelming. But dipping your toe in won’t cost you a lot. Try not to overthink it. If you’re not sure if an exercise program is right for you, just try it. There are so many diverse programs to choose from—boxing, yoga, tae kwon do. You might not get it right the first time, but keep dipping your toe in.”
She and her dad did, and they haven’t looked back.
