As much as I enjoy riding all over the country and hanging out at motorcycle rallies and trade shows, it only takes a minute to remind me of the reason I left the security of a steady job and decided to dedicate my foreseeable future to bring education, inspiration and hope to others living every day with the unpredictable symptoms and progression of multiple sclerosis (MS).
It was a chance meeting at the American International Motorcycle Exposition (AIMExpo) in Las Vegas this past October that quickly reminded me of my purpose for being there. I was a guest of Yamaha, showing off my new Star Venture motorcycle, as well as handing out my brochures and Chasing the Cure wristbands. Inside the Mandalay Bay Convention Center, I stood on my feet for twelve hours each of the four days of the event. The first two days were for dealers and press, and the last two days were for the general public. It is the largest motorcycle trade show in the country. It was exhausting but great exposure for my journey, as I am always on the hunt for new corporate sponsors, as well as trying to grow my social media followers.
Some time on Saturday afternoon, a middle-aged couple approached me after seeing the graphics on my bike showing that I was Chasing the Cure for MS. It didn’t take them long to tell me their adult son had just been diagnosed with MS a week earlier. They were clearly shaken by the news, sad, scared and a bit overwhelmed by all of it. I started as I always do, inquiring about their son’s symptoms, where he was at regarding treatment and stressing how important it was to find an MS specialist. After a while, they realized that I was actually a patient as well, bringing a few tears but also a bit of relief. I gave them resources and websites to help them navigate the vast information available as well as offered to call or speak to their son if they thought it would help. By the time they left my booth, the tears and fears had been wiped away and replaced with a round of hugs. I made them promise they would call me when they had more questions. They left with some information and hope.
Forty-five minutes with a couple who must have had some interest in motorcycles (we never did actually talk about bikes) quickly reminded me of the importance of my mission and reassured me that the struggles I face and the sacrifices I make while continuing to share my story are indeed worth it.
After six years on the road, 350,000 miles and over $150,000 raised for charity, I am shifting my journey once again. As of 2019, I will no longer be speaking at pharmaceutical-sponsored events, but will continue to share my story at unbranded and unbiased patient programs presented by a non-profit organization called MS Views and News (MSVN). Based out of Miami, MSVN has been providing free educational events across the country for many years. After spending quite bit of time and energy trying to find an MS charity that had the same goals as I did and was willing to help promote my efforts and fundraising events, I am excited to be partnering with MSVN President Stuart Schlossman and his organization.
Together, we are developing a series of presentations to deliver information to remote areas of the country where MS patients are not getting the same level of help or resources that bigger communities receive. The Ride to Reach Rural America initiative will utilize me on my motorcycle to bring education, inspiration and hope along the back roads of America, one small town at a time.
Much like the events I was already speaking at, I will be delivering a bit of inspiration, some insight into my disease and treatment history, and for the first time, be allowed to add humor and a slideshow to my talks. No longer will my talk be scrutinized by legal and compliance departments or the FDA, as it had been in the past. Being able to tell my story, share my journey and inspire others freely will allow me to reach more people at each event. For the first time in six years, I don’t have to be anonymous and can provide my audiences with the means to follow me or contact me through social media.
That’s right folks, Paul P. (actual patient) is dead.
LONGHAULPAUL is alive, on the road and coming to a small town near you.
Like, share, follow or get the hell out of his way!