Just two ordinary guys with Parkinson’s disease, trying to make a difference. That’s how Jim Morgan and Scott Rider describe themselves. While it’s true – they’re so much more than just that.
Scott and Jim both have Parkinson’s and were diagnosed in 2007. They met in 2018 as co-chairs of the first-ever volunteer leadership summit for the Parkinson’s Foundation and have been like brothers since. Their individual journeys have been different, but together they’re raising awareness of the disease as they travel across the country with Parkinson’s Across America, a cross-country, motorcoach adventure to provide the world with an educational yet personal look into what life is like with Parkinson’s disease.
Overcoming fear and finding relief through DBS
More than 15 years ago, Jim went on a lengthy and exhausting business trip, at the end of which he realized he couldn’t type or write his name. He went to a neurologist, thinking he had carpal tunnel syndrome, but quickly discovered it was Parkinson’s.
Over the years, Jim tried a variety of medications, and at one point was taking 30 pills a day to manage the disease. “I had really bad involuntary muscle movements. I would sit at my desk and make myself seasick. Scott will tell you it was terrible talking to me on video – I was all over the place and couldn’t control it. It just wasn’t a sustainable way for me to live,” he said.
Jim had heard about deep brain stimulation (DBS) before but delayed looking into it out of fear. His wife finally convinced him to explore it as a treatment option, and it turned out he was a candidate.
So, in September 2020, Jim had the Boston Scientific Vercise™ Deep Brain Stimulation System implanted, which is designed to help treat the symptoms of Parkinson’s disease by delivering targeted electrical stimulation via surgically implanted leads in the brain connected to an implantable pulse generator. Jim was nervous going in, but the surgery was a success, and he now wishes he’d done it sooner.
“I had built this up so much and was terrified, but, in reality, DBS was nothing I should have been afraid of,” Jim noted. “The whole procedure was actually pretty cool. I got to hear what my brain sounds like – I didn’t even know our brains made noise! – and watch them use some impressive imaging to place the leads in my brain. It was all really fascinating!”
The procedure has enabled him to spend a lot more quality time with his family and with others in the Parkinson’s community, hearing their stories and how procedures like his have changed their lives for the better.
Spreading hope and encouragement
“Parkinson’s can be such an isolating disease,” Scott noted. “We want to make sure that no one in this community feels alone.”
Scott realized something was wrong with his body when he was skiing and couldn’t turn right, and finally saw a doctor when he was running and noticed that his toes were curling/clenching. After seeing many specialists, an impromptu conversation with his family physician directed him to a neurologist.
“When I was diagnosed, I didn’t hear anything after the words Parkinson’s disease,” Scott remembers. “I got outside, everything was a blur, and I just cried on the sidewalk. It was such an emotional moment.”
“Most people don’t want to be identified by their disease, but I do because it means I’m touching people’s lives and answering questions they may have otherwise been too afraid to ask. Traveling the country with Parkinson’s Across America has allowed me to meet so many people that have changed my life, and I never would have met them if I’d turned inward instead of outward.”
So much gratitude for deep brain stimulation
“There are so many people that go to work every day in companies and research labs and medical facilities to help people with Parkinson’s that don’t realize how many lives they’ve touched,” Scott explained. “From admins to accountants to manufacturers to researchers to marketers – we want to thank everyone for their tireless efforts to bring relief to this community.”
“It’s so true,” Jim chimed in. “Without all of them, I certainly wouldn’t be sitting here. Well, I’d be sitting here, but I certainly wouldn’t be so still.”
Learn more about deep brain stimulation.