For 25 years, Roy got diagnosis after diagnosis, surgeries, and nothing worked. Nothing happened. The tremor remained. Five years ago, at the age of 50, doctors got it right: Parkinson’s. In that moment, Roy found relief. “I was so frustrated for so long without knowing what was wrong,” he said. But now he had a name. “Immediately I wanted to know what I could do. I wanted to have fun with it.”
Since then, life has taken a drastic turn. Roy laughs when he says he used to have it all: the Porsche, the penthouse, and Harley. And he sold it all and went on a ride with Parkinson’s.
There have been trials, fundraisers, DBS surgery last July, and a few months later the PD Challenge a biking trip across the country to raise awareness and be an advocate for Parkinson’s patients.
Along the route, Roy and Lynn stopped in many cities and met with many Parkinson’s patients. He spent time talking with those people about their options and about trials. People think trials are hard, he said. But they’re not. The problem is that they just don’t know where to start. Roy went out and found three of his trials on his own. The fourth he found through Fox Trial Finder.
How are we going to find them, he asks? How are we going to find a cure?
“I talk to people about their legacies. What are you going to leave? You can’t just give up. You can’t just quit. You could be a victim or you could do something bigger than yourself.”
And with trials, he thinks we’re getting close.
Lynn chimes in talking about their journey and how they advocate for trials and Parkinson’s. “Roy always says,” she said, “Maybe it won’t help me, but maybe it’ll help my grandkids.”
But it wasn’t always so easy, Lynn admitted. For Roy, his diagnosis was the name, the answer he’d been looking for since his 20s. For her, Lynn went through the stages of grief much quicker. Parkinson’s entered their vocabulary around their first wedding anniversary.
“A name is good,” she recalled. “But I’m looking further into what does it mean? I’m 40 years old. Just got married. Kids going off to college. It scared me a lot.”
It took awhile for her to figure it out. So he’s depressed: Was it him? The PD? It wasn’t her. “It’s been a hard road for me in a lot of ways,” she admits.
But the cross-country trip brought them together a lot more. And it helped them find what they were looking for. Roy and Lynn just moved to Arizona. And they picked their town because of the Parkinson’s community. They both have support groups, and they’re both active in the cause. They’ll be working with Parkinson’s and continuing to do fundraisers.
“It was either retire, or do something bigger than myself,” Roy said.
I interviewed the Rodens for a Michael J Fox Foundation guest post. Read more about them at the Foundation’s website. And keep checking back as I tell more stories of the courageous people we meet along this crazy, Parkinson’s journey.