Battling MS Symptoms

Title: Mile Post 180,000. Image: Long Haul Paul Riding his Motorcycle with protective gear.

It’s been four years since I concocted this million-mile motorcycle journey for multiple sclerosis (MS), and I thought it might be a good time to review and evaluate my mission. I know I’ve missed some original goals and opportunities, but like fighting the disease itself, I charge forward with determination daily while continuing to chase the cure. I may have fallen short of my optimistic 100,000 miles per year plan, but I’ve so far managed to document riding 180,000 miles for MS across the United States and Canada. If you consider the average motorcyclist rides 3,000 miles a year, I’ve racked up 60 years of riding. I have burned through 25 sets of tires, over 5,000 gallons of petrol and not a drop of soap. Yep, bike #1 still has yet to be washed!

At one point I was hoping to raise a dollar for every mile, but I am not completely disappointed to report that with the help of riders and supporters, I’ve raised nearly $100,000 for the National Multiple Sclerosis Society. Thanks to opportunities from multiple pharmaceutical companies, I have been able to share my story at almost 200 MS patient programs from FloridaImage of Paul at the Arctic Circle Sign to Alaska, as well as Maine, California and almost every state in between. Amazingly, no one has questioned my traveling to every single event by motorcycle. I’ve also spoken at dozens of motorcycle rallies, open houses and conferences. Apparently, my humorously painful struggle to overcome challenges while riding the world’s biggest piece of crap in the World’s Toughest Motorcycle Competition is gaining universal appeal because I have been receiving inquiries to share my Also Ran presentation at colleges and conferences.

With the help of National Powersports Distributors in New Hampshire, I was able to set a world record by being the first person to ride 1,000 miles in 24 hours on 100 different bikes. I then rode one of their scooters from Boston to Chicago in a powder blue tuxedo. The two extreme rides raised $10,000. Although my second attempt at a world record was stalled by lack of funding and employment issues, I’ve not completely given up on my plan to ride 50,000 miles in 50 days. I’ve new fundraising ideas as well, like riding a chopper coast to coast in 50 hours and other ridiculous feats, so stay tuned!

I may have started as a man with a bike and a half-baked idea, but my determination and perseverance have now garnered respect and support from motorcycle industry leaders such as Yamaha, Twisted Throttle, Bridgestone, Spectro Oils, Bill Mayer Saddles, Aerostich, Globalstar and the Iron Butt Association. My second Yamaha motorcycle, riding gear and accessories have all been graciously provided by people and companies that believe in my journey; I am humbly appreciative.

I’ve appeared in national live educational broadcasts, motorcycle podcasts, newspaper articles, evening newscasts, and I am now featured in pamphlets and websites about treatment options for MS relapse therapy. I’ve appeared in multiple motorcycle gear and accessory catalogs and been the subject of corporate inspirational e-mail blasts to hundreds of thousands of people. Thousands of followers visit my web site weekly, read my blog or just check my live SPOT satellite- tracking page to see where the heck I’m heading next. Yamaha invites me to share my story and display my dirty bike under their tent at national events across the country. I believe every bit of exposure I get is another opportunity to raise awareness and funds that will ultimately lead to a cure for MS.

These four years did not pass without pain, problems or consequences. My days on the motorcycle can be long and hard and leave little time to enjoy the beautiful places I whir by. I am often on the interstate 15 to 18 hours at a time, trying to make it to my next scheduled event. Thousand mile days blend into each other as I race against time and the uncertainty of my disease’s progression. There is no place in my schedule for waiting out the weather. Rain, fog, sleet, snow, and blistering heat wear me down but also feed my determination to press on. I fear if I slow down, my symptoms and my disease will catch up, and I may never regain my momentum. When my body complains about the constant jarring and repetitive motion of riding, I try to remind myself how lucky I am to still feel pain, as many people who live with MS have complete numbness in their limbs or entire bodies. My millionmile journey is for all who have been struck by this disease. I battle my MS symptoms daily: fatigue, cognitive issues, heat intolerance and my latest inconvenient symptom I now refer to as RBS or Restless Bladder Syndrome.

Image left Paul with bike in front of Iron Butt Iowa Pig sign. Image Top right Paul Speaking on a TV interview. Image Bottom Right: Paul seated on teh set of a TV Interview with three others.Besides my body, I have also beaten the snot out my bike and most of my gear. My journey expenses are double what I collect from speaking honorariums. I had to choose between being on the road and my full-time job, so I switched to part-time. I have no guarantee or control over the amount of presentations I get invited to speak at, and at some point they may stop altogether. A third of my appearances and seminars are on my dime. I am always looking for additional opportunities to help with the high costs of this venture and to help survive financially at home. While I’m going there, I might also mention I am also coming up short on my share of the work in and around my home. I buzz in for a few days, reload and buzz back out. While I’m eating at restaurants and having a maid make my bed, my incredible wife is taking care of everything at home alone. This journey has indeed challenged our relationship. As we celebrate ten years together, I must say I am the luckiest man alive to have such a caring and loving partner who rarely complains or reminds me of the sacrifices she endures every single day because of a monumental change she did not sign up for. Without Elin, this journey would not be happening. Her patience, understanding and unconditional love is worthy of sainthood. She is my best friend by far, and I love her dearly.

Overall, I’ll score my mission at the four-year mark a B-. My journey has grown some very strong roots, but there is so much more to accomplish. I need to ride more and raise more awareness. I need to find additional time to write, create new fundraisers and update the social media portions of my mission. I believe encouraging folks to find something to be passionate about and to make it more important than their disease really helps. The warm fuzzies I get every time I leave an event where I was able to make a difference helps medicate my soul and treat my disease. I need to help more people. I want to inspire new audiences who may also need encouragement to overcome the challenges they face in their lives.

Publishing my life’s story, setting new world records and receiving additional requests to speak could certainly help ease the financial burden of my quest. It would also be great to see my MS5000 fundraiser become a national event, thus increasing exposure and funds raised exponentially for the National MS Society. I take great pride in knowing some of the money I’ve raised was used to fund stem cell research, which shows great promise in actually stopping and possibly reversing MS damage. As I travel around to different regions of the country, I see folks who’ve lived decades without treatment or quality care and who suffer from the debilitating symptoms of this disease. Every mile and every dollar I raise, I think of them. I am also riding against a ticking clock, and I understand the uncertainty of what may happen to those of us lucky enough to slow the disease down. Today, MS is an incurable, progressive disease that damages the central nervous system. The remedy, by my calculations, is only 820,000 miles away and that is why I must continue riding as fast and as hard as I can, Chasing the Cure.

Thanks to these companies who’ve supported my journey, while asking for nothing in return; Yamaha, Twisted Throttle, Bridgestone, National Power Sports, Aero Stich, Spectro Oils, Eazcycle, Bill Mayer Saddles, Find Me Spot and Iron Butt.


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