Editor’s Note: Bryan Roberts is an advocate for the Parkinson’s community and a member of the MJFF Patient Council. He was diagnosed with Parkinson’s disease in 2010 at age 30 and is committed to advocacy, philanthropy and clinical trial participation. Bryan is the associate dean in the Roy H. Park School of Communications at Ithaca College.
Can't stop. Won't stop.
This has been my mantra since I was diagnosed with Parkinson’s disease at age 30 in 2010.
When I meet with individuals who are newly diagnosed, I often suggest that they make a list of the things in life that they enjoy and then, as life progresses, check-in to see if they still find joy in them. Most people are surprised that, years later, they are still able to engage in and enjoy the items on their list. So what was on my list? I will give you my top 3:
1. Playing Baseball
2. Skateboarding/Rollerblading/Ice skating etc.
3. Traveling
Can’t Stop. Won’t stop.
The first two items on the list I do basically every day. That’s right—I am a 45-year-old man who still plays baseball and roller skates just about every day. LIVE THE DREAM. Traveling has changed for me and as my disease has progressed, there are new issues that can make it more challenging for me to just get up and go. That being said, I still travel quite bit each month—by plane, railroad, ferry, Uber, etc.
The Michael J. Fox Foundation has a comprehensive list regarding travel tips here but, as we enter the holiday travel season, I thought I would share the takeaways that I have learned over the last 15 years of traveling with Parkinson's disease.
Traveling can be extremely stressful—engage in behaviors that lower, not elevate, your stress and anxiety. For example, I am never on-time. The joke is that I am always on “Island Time” — the island in question here would be Long Island. Even though I am chronically late, I do my best to be on-time or (gasp!) even early because of the stress that I feel when I am running behind. I can be very symptomatic due to stress and that is the last thing I want while traveling so be honest with yourself concerning what makes your Parkinson’s worse and go from there.
Finding time to rest has become essential to a good travel experience for me. When I was younger, I tried to keep my schedule as tight as possible so that I could maximize my time outside of traveling but now, I find it critical to allow myself time to rest during my travel experience. What does that look like? It could mean finding time to eat during a layover or it could be just allowing time to call my daughter during a trip. Traveling often feels like a grind when you have a chronic illness, and it is important to keep your endurance up.
Don’t be afraid to ask for assistance. I typically travel alone and occasionally I do need the help of someone else. For example, I was on an Amtrak train going from Washington DC back to NY and I dropped one of my AirPods below my seat and I was simply too stiff to bend down to reach it. After an agonizing 45 minutes, I finally caved and asked the guy sitting next to me if he could reach it. I explained that I had PD and he turned out to be exceptionally nice. I spent all that time worrying about asking him for help and it turned out he was a great guy.
Go easy on yourself and be open about having Parkinson’s Disease. This has been the hardest concept for me to accept as I have lived the past 15 years with PD. My vanity has forced me to try to mask my symptoms but that is damn near impossible to do when I’m traveling for any length of time. I have come to accept that people may stare or ask if everything is alright—I now view it as a teachable moment. If I’m able to foster some awareness or shared understanding, then it is worth the fleeting feeling of social awkwardness.
Additionally, keep in mind that Parkinson’s is not an easy disease and it takes a strong person to manage it. The fact that you’re traveling is an impressive feat and it should be a point of pride and not something that causes shame or anxiety.
Change your perspective concerning travel—instead of approaching it with fear of everything that can go wrong, look at what an amazing opportunity it is and lucky we are to be able to move freely around this country. The process does not have to be a drag—the act of getting to a destination can be as much fun as when you get there. To quote the Buddha, ‘it is better to travel well than to arrive.’ Parkinson’s disease is commonly viewed as a disease of diminishment, but it doesn’t have to be. I think it is a disease of modification and with the right adjustments, you can maintain the life that you want and deserve.
Have a happy holiday season and remember:
Can’t Stop. Won’t stop.
The Michael J. Fox Foundation provides a collection of easy-to-read, downloadable guides filled with practical tips and real-world advice from Dr. Rachel Dolhun — MJFF’s principal medical advisor and a movement disorder specialist — and other leading experts in Parkinson’s care. Visit michaeljfox.org/guides to learn more.
The Parkinson’s journey can feel isolating at times, both for those living with PD and their loved ones. The Parkinson’s Buddy Network is an online community of people impacted by Parkinson’s — those living with the disease, their loved ones and caregivers. The platform was designed to help you make meaningful connections, engage in important dialogue, find useful resources and build long-lasting relationships. Learn more here.