I won’t pretend to be an off-roading enthusiast, but I have been on a dozen or so excursions with some seasoned veterans. Along the way, I’ve picked up a few useful nuggets to keep things safe and fun on the back roads. Interestingly, some of these learnings apply to making the most of living with Young Onset Parkinson’s Disease (YOPD).
When you’re off-roading, the goal isn’t to avoid the obstacles, it’s to find the right line through them. If I am navigating a technical trail in Sierra Nevadas, the philosophy remains the same: don’t fight the terrain; prepare for it. When I was first diagnosed with YOPD, it felt like the smooth pavement I had been driving on for years suddenly turned into a rock-strewn trail. I was 45 years old, and the road ahead looked bleak, maybe even impassable. But five years later, I’ve realized that while I’ve had to change my approach, I’ve never had to stop completely. As some of my peers have pointed out, stopping is a sure way to make the road tougher so I just sped up. Keeping up with my physical therapy, being outdoors, and spending time with friends and loved ones all remain essential to my wellbeing.
Another off-roading tip – don’t just head into the wilderness without a pre-trip inspection. Check the fluids, tire pressure, and the recovery gear. Living with YOPD has taught me the necessity of the pre-trip inspection for my life and activities whether I am behind the wheel or preparing for a different type of journey. Before I can be the father and role model I aspire to be, a good husband, or an advocate for the Parkinson’s community, I have to check in with myself, take stock of my own physical and mental state, and “put my own oxygen mask on first” if need be. For me, that means a daily practice of gratitude and a positive attitude that isn’t just wishful thinking—it’s maintenance. If I haven’t done the work to maintain my own health through self-care and am not in the right mindset, I’m no good to those who depend on me.
People often ask how I manage to organize complex group activities or travel while managing my symptoms. My mantra is simple: “Plan, don’t worry. Learn, don’t regret. Worry is like spinning your tires in the mud—it uses a lot of energy but gets you nowhere. Planning, however, is the winch that pulls you out. I plan for my “off” periods just like I plan logistics for the trip itself. By the time I’m actually on the road, the worry has been replaced by a roadmap. And if something goes wrong? I don’t regret the detour; I learn from it so I can pick a better line next time.
No one finishes a rally alone. Over the years, I’ve found that my “Global Pit Crew”—my in-person support right here in San Carlos and my vast online community—is what keeps me on the track. Whether it’s rock climbing or chairing an advisory council with fellow “Parkies”, these communities provide the torque I need when the road gets rocky or the incline gets steep.
There’s a saying about off-roading that I’ve adopted: “There are two kinds of days off-roading: a good day and a great day. The only difference is that on a great day, you don’t need a friend to give you a tow.”
Living with YOPD is much the same. Every day I get to wake up, see my family, and move my body is a good day. The days where we make a breakthrough in advocacy or I hit a personal best at the gym? Those are the great days. But regardless of the outcome, I’m just grateful to be out on the trail.
YOPD is an “all-terrain” life. It’s bumpy, it’s unpredictable, and it requires a lot of gear shifts. But as any off-roader will tell you, the best views are usually found at the end of the toughest trails. As long as I have my crew, my plan, and my gratitude, I’m looking forward the miles ahead.