In 2000, at the age of 24, I was running a franchise that replaced airbags and safety restraint systems in cars that had been in a collision. I started losing control of my left hand, dropping tools, slight tremor, and my hand would freeze in a position for a brief moment. Thinking this was odd, I went to my family doctor. He was confused as to what was going on, so next I was referred to a local neurologist who thought it might be carpal tunnel. I knew it was something more than carpal tunnel and went seeking another opinion. I went to Rush Medical Center in Chicago and met a doctor who had experience with Young-onset Parkinson’s where she confirmed my suspicions. This diagnosis was devastating as my wife had just given birth to our son just months earlier and me, being a new father, had fears of what my life would be like having a progressive disease and a young child. I went through a period of anxiety and depression, and there wasn’t much research on ways to slow the progression. I was told I would be walking with a cane or in a wheelchair within the next 10 years. I decided that I was going to continue living my life and being as active as I could, golfing, bowling, basketball, cycling, etc. All activities now known to slow progression. I was lucky I had an active lifestyle already and progression was not as fast as predicted. I hid PD from my peers for a couple of years until it became obvious something was different, so I embraced the fact that I have PD and decided to share my diagnosis with those around me. Many of these folks had noticed something was off and expressed what they had been witnessing with the changes going on in my physical state. The myth that PD is an “old person’s” disease had been debunked. In 2014, my wife wanted to run a 5K and then a half-marathon which she did for Team Fox. We were invited to a dinner for the runners in Chicago. I didn’t know what to expect and I was very nervous. I thought we’d pop-in and have a quick bite and then duck out unnoticed, but that’s not what happened. I ended up meeting an extraordinary group of people, some close to my age, that were experiencing PD as well. We ended up staying for about 5 hours until the restaurant asked us to leave because they wanted to close. After that night, I wanted to become an advocate and raise awareness of YOPD.
In the Spring of 2015, I saw a video of a new experimental treatment for Parkinson’s being done in Israel called MRI/Focused Ultrasound. It was a non-invasive way to treat tremors and dyskinesia. I was intrigued by this and started researching if anyone in the States was experimenting with this new technology. I found 5 places in the USA that were taking applications for clinical trials and I applied to all of them. The only one accepting apps for an actual clinical study with test subjects at that point was the University of Maryland. I applied and qualified. For the next 4 months, my wife and I drove 12-13 hours one-way each trip making frequent visits to make sure I was eligible. Then, that following October, I was accepted to get the procedure done. On November 15, 2015, I was the second person in the USA to be treated by the University of Maryland by this new process and it was a success. The MRIFUS was like rolling back the odometer of my PD journey. I felt better than I had in probably 10 years!
By being part of this trial study, I developed a greater appreciation for the foundations that are helping provide funding for studies like this one. As an avid bowler, my wife and I set up our first bowling tournament with the proceeds going to the Michael J Fox Foundation. We raised about $8000. We have since hosted over a half dozen tournaments, raising over $100,000 for research. Over the past two years, I have shifted my focus from bowling to cycling, particularly riding a recumbent trike. We still are having tournaments and a local college wants to have their students learn about giving back, so they are taking the reins on the tournaments. This has freed me up to pursue my passion for cycling. After having two falls, one on my trail bike and the other on my road bike, my wife suggested I look into recumbent trikes. With a trike, I didn’t have to worry nearly as much about balance and could focus on riding again. I found a few manufacturers and tried out a couple of trikes. After doing some investigation on trike manufacturers, I found TerraTrike, a fairly local trike manufacturer in Grand Rapids, Michigan. I found a tab on their website for Sponsorships, and submitted my information and my story. Within 24 hours, I received a call from their national sales manager wanting to meet with me. I found he had a personal connection with PD since he had family members battling the disease as well. He was excited to hear our story and wanted to find a way to help. They invited us to Cycle-Con, which is the national show for recumbent bicycles/tricycles. We met many people with disabilities, including Parkinson’s, where the activity of pedaling really helps. In early Spring of 2025, I was asked to be the TerraTrike brand ambassador for PD and it’s been a whirlwind ever since.
Don’t get me wrong, PD sucks, and I wouldn’t wish it on an enemy, but I can honestly say that if I hadn’t been diagnosed with Parkinson’s, I probably would have never met this amazing group of people that I am proud to call friends and family. I also wouldn’t be doing something as crazy as riding a trike across the USA from Chicago to Phoenix in 2026. Everything is a matter of perspective and how you take the curveballs that are thrown at you in life. My motto has been: ” If you stop moving, you WILL STOP moving.” Exercise is a known and proven way to slow PD. That’s how I will continue to live with this disease until a cure is found.