Every six months or so, John (who prefers not to share his full name) walks the Brooklyn Bridge to gauge the progression of his Parkinson’s disease (PD). It’s a return home of sorts for the Brooklyn-native-turned-New Jersey resident. The mile jaunt is also one of his favorite activities; while the climb up is a challenge, once you get there, the view of Lower Manhattan and New York Harbor is unparalleled.
John’s used to journeys: The former garment industry professional used to frequent the Middle East, searching for business partners. And he’s tenacious, a trait which served him well through the often intense negotiations that led to the partnerships that made his company a success.
Since his diagnosis with PD three years ago, John, now 60, has adapted that tenacity to living with Parkinson’s. He works out at the gym two hours per day, six days per week, cycling and sweating his way through a Parkinson’s-specific physical therapy program.
Always, he tries to drive himself forward, even on those bad days that inevitably arise. John takes his perspective from his memorabilia collection, and in particular, from a black and white pin from the Broadway show Spamalot which reminds its wearer that “I’m not dead yet.”
“I didn’t do anything to deserve Parkinson’s,” says John. “But it’s part of my life now, so I’m going to make the best of it I can.”
As he sees it, there’s no use in sitting around waiting for false hopes to manifest themselves. So, in addition to staying active, John has devoted himself to clinical research. Already, he’s participated in three clinical trials which he found using The Michael J. Fox Foundation’s matching tool, Fox Trial Finder. He’s awaiting word on possibly participating in a fourth.
“There are brilliant people dedicating their lives to finding better treatments for PD, and I’ve met these people during my participation in clinical trials,” says John. “But they need study volunteers. The only way we’re going to get new drugs to market is to get involved ourselves.”
The possibility that he might one day experience cognitive decline related to PD is what scares John the most. But, as has always been his modus operandi, John refuses to sit still and let that fear overcome him. Instead, he has given his time, energy, and body to a study on cognitive impairment in PD.
“You have to get up, and seek out real hope,” he says. “That’s what will get you somewhere.”
It’s that proactive spirit that continues to drive John across the Brooklyn Bridge (and back) every fall and spring.
You, too, can begin your own clinical trial journey by completing a profile at Fox Trial Finder today.