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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. 

It was a chance meeting at the American International Motorcycle Exposition (AIMExpo) in Las Vegas this past October that quickly reminded me of my true purpose for being there. I was a guest of Yamaha, showing off my new Star Venture touring 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 strictly for dealers and press, and the last two days were open for the general public. It is the largest motorcycle trade show in the country. It is exhausting, but provides great national exposure for my journey. It is also a great opportunity to meet potential corporate sponsors and supporters while trying to grow my social media followers.

Some time during the afternoon on Saturday, a middle-aged couple approached me after seeing the graphics on my bike showing 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 or two earlier. They were clearly shaken by the news, sad, scared and a bit overwhelmed with all of it. It has been 14 years since my diagnosis and because I have responded well to treatment, I sometimes forget how the emotional toll being diagnosed with a chronic and progressive disease collaterally strikes friends and family as well.

I started as I always do, inquiring about their son’s symptoms, where he was at regarding treatment decisions 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 them a few tears but also a bit of relief. I gave them resources and websites to help 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 better information and hope. (And a couple of Longhaulpaul’s Chasing the Cure wristbands)

Forty five minutes with a couple who must have had some interest in motorcycles (we never did actually talk about bikes) quickly reminded me the importance of my mission. It reassured me the financial struggles I face and the sacrifices I continue to make while continuing to share my story on the road are indeed worth it.

My journey is making a difference

In 2013, I agreed to be a patient in the first-ever live simulcasted roll out of a medication. A brand new oral medication to slow down MS progression.

Since then, and over the last five years, I have worked hard to become one of the top patient advocate speakers for multiple pharmaceutical companies, delivering inspirational talks to over 200 audiences across the country. I wrote articles for their websites, spoke at their national conventions, delivered inspirational talks to marketing teams, finance departments and became a poster boy for brochures, ads, and videos.

I mentored other patient speakers and provided feedback to improve patient experiences at educational events across the country. I was good at what I did, and knew I was helping people living with MS all over the country. The medication, by the way, just happened to become the #1 oral treatment for MS in the United States.

Speaking at educational events as a patient with experience on some of the therapy treatments available while also inspiring others to continue following their passions provided me with a source of income to continue doing what I felt was my purpose in life. As hard as it was for me, I followed all the strict FDA guidelines for the content of my talks and adhered to the legal and compliance policies that came with representing the drug companies at these events. One of the biggest drawbacks of being a patient speaker for me was not being able to tell the audience how they could follow my journey, my social media links or even my last name. I was not able to combine the two worlds, my very public presence on social media which I was trying to grow and being Paul P., Real Patient Living with MS. I was not allowed to publicly like, share, comment or invite my social media and motorcycle audiences to the pharmaceutical events. I was not allowed to share pictures or videos from anything I was doing for the pharmaceutical companies, even when the photos were of me and plastered across their websites.

Here I am with a stunt dog, doing a photo shoot which is actually the cover photo for the medication’s Facebook page

For liability reasons, my representing them at their events could not blend into my online social media posts in any shape or form; as anything I potentially might say or post on my personal pages could be held against them by the FDA. I followed the rules.

The only thing I required from day one, and reminded them of each year, was that I would go anywhere, accept every invite to speak as long as I was allowed to use my own vehicle, which was a motorcycle, to travel to each event. I wouldn’t need airfare, car service, airport parking or meals; I even agreed to pay all my own hotels, food and tolls while on the road, if they would just cover my mileage. They agreed. Being allowed to ride my motorcycle to each event instead of riding in planes and limos added tens of thousands of miles to my million mile journey each year.

I was the easiest speaker to book, and never refused the tough assignments like getting to Staten Island or Brooklyn for 5:00 pm on a Friday, or downtown Boston during the playoffs. Averaged out, it was no more expensive to have me travel anywhere in the country than it was to fly and provide transportation to the other patient speakers. By 2016, I had established a good reputation as an enjoyable and engaging presenter and I was getting invited to speak an average of 3 times a month. Considering some of the events were across the country and took a week or more of travel time; holding a steady day job was just not possible. I tried working a day job part time, but event that didn’t cut it. It wasn’t by accident that I was getting more and more invites, it was my dedication and hard work, getting better and better at delivering memorable and inspiring presentations. In October 2016, I left the real work force to speak full time.

Everything was rolling along well until someone in bookkeeping discovered they were reimbursing personal travel expenses at a much higher rate to a single patient. ME. Without realizing I was also the only patient speaker who had ZERO expenses paid out to third parties on my behalf for each event, they slammed the red flag buzzer. Because of fear of violating FDA Sunshine laws, they decided to play it safe by changing the travel reimbursement rules. They didn’t look further into it or even understand the reason I was using traveling by motorcycle as part of my story. The travel clause of the speaker contract was quickly changed for all 200 speakers, but effected only one, ME. A maximum reimbursement that wouldn’t even cover my costs to travel a few hundred miles from my home was implemented. No such dollar limit was placed on any other travel means or costs, basically discriminating against anyone who didn’t fly. This change was a huge blow to me and made it impossible for me to continue as a speaker. “Just fly like everyone else,” I was told “and we will pay any and all your expenses”.

By now you know, that was not an option for me.

I didn’t go without putting in a good argument, offering to accept a travel fee equal to the costs associated with flying or a reduced reimbursement rate for longer travel; but they would have none of it. I continued to accept offers to speak, spending thousands of dollars out of pocket to travel last year while I argued my case as high into management as I could, which probably didn’t make the situation any better.

The last correspondence I received, acknowledging they realized the travel change only affected me and that my arguments were valid, but that they were now also concerned about my safety traveling by motorcycle. (The company was no more liable for me on my bike as they would be if I died in an Uber 3 miles from my hotel in route to the venue.) Considering I had never had an incident or was ever even late while riding over 150,000 miles to patient events, this revelation brought the sad realization that it wasn’t just about the travel expenses anymore, someone really hated motorcycles. Sadly, my time was up.

Ride to Reach Rural America

So, after six years on the road, 350,000 miles and over $150,000 raised for charity, my  journey took a detour once again. As of 2019, I no longer will be speaking at pharmaceutical sponsored events, but will continue to share my story at unbranded and unbiased patient programs presented by a non-profit organizations. I will continue to grow my motorcycle presentations as well, hoping to visit dealers across the country offering seminars and meet and great opportunities.

After spending quite bit of time and energy trying to find a 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 MS Views and News Inc. Based out of Miami, MSVN has been providing free educational events across the country for many years. I will be partnering with President Stuart Schlossman and his organization both for my fundraising events and as a patient advocate speaker at a number of their events.

Together, we are delivering a series of presentations to remote areas of the country where MS patients are not getting the same level of help or resources the bigger communities receive. The Ride to Reach Rural America initiative utilizes me on my motorcycle to bring education, inspiration and hope along the back roads of America, one small town at a time.

They can’t take away my motorcycle this time, RIDE is part of the program’s name.

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 6 years, I no longer have to remain anonymous and can provide my audiences the means to follow me or contact me through social media. 

That’s right folks,  Paul P. (actual MS 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!

Please check out my new fundraisers for 2019. The MS 1000 is an IBA sanctioned Saddlesore ride and my next world crazy world record attempt will be streamed LIVE March 29th, Nonstop to Nowhere

www.MSViewsandNews.org

After 6 years on the road, my body finally cried uncle and forced me to take a breather for a few weeks. I had been having issues with my arms and neck, pain and numbness mostly for a few years. Around December of last year, I began to have weakness in my right arm, specifically the inability to raise a beer mug to even shoulder height, which was very, very concerning to me! I knew it was spine related, not a lesion from my Multiple Sclerosis. An MRI proved me right and in late August I received a shiny new titanium bracket in my neck, some cadaver bone particles and a nice scar across my neck. I had a procedure which fused a handful of my cervical vertebra together called Anterior Cervical Discectomy and Fusion or ACDF.

Luckily I had a busy July and August,  putting over 13,000 miles on my new Yamaha Star Venture before the surgery and realized the new bike donated by Yamaha is going to work great for the next quarter million miles of my intended goal of one million MS miles. It handles great, comfortable on long distance rides and has a ton of great options that help make each ride enjoyable. The V-twin motor pulls like a tractor and is just plain fun to ride fast or slow. It’s going to be like cheating!  

This left me with a big dilemma. Originally I was expecting to keep my other bike, the Yamaha Super Tenere as sort of a back-up spare, but struggling to pay my travel expenses and a lack of paid speaking opportunities this year led me to the conclusion I should sell bike 2 or Curechaser II as it is now called. (I only name by bikes after I stop riding them) With 122,000 miles on it, I did not expect to get much for it. As I was talking to a friend about what I should do, he reminded me I was an idiot, and should raffle the bike off. He said people will be interested in owning a piece of my story and would be glad to know the proceeds would go towards my bills.

“You do know your first bike which looks just like this one, is in a museum, surrounded by armed guards and cameras, being admired for it’s place in motorcycle history by about a million visitors a year, right?” 

I never ask for donations for myself, but this idea was different. Raffle participants were buying a chance to own something worth much more than what they paid, and I would end up with more money than if I tried to sell the bike on Craigslist.

And so the plan was hatched. I decided to offer the bike up to the winner of such raffle, with a limit of just 122 tickets, representing each of the thousand miles of flawless service the bike delivered to me. The money raised would help pay some of this year’s unpaid bills.

The winner, in addition to getting the Motorcycle with all it’s customized options and accessories, would receive a copy of all the ABILITY articles and other magazine stories that featured the motorcycle in them. Copies of pictures, videos, news reports and even my helmet adorned with the Longhaulpaul logos was included in the deal. The plan also includes having me deliver the bike to the winner’s home, anywhere in the continental USA and I secretly hoped it would allow me one last cross country jaunt on such a fine machine.

Excited about selling every ticket in just a few hours, I spent the weekend  before the raffle repairing a few items needing attention on the bike. I changed all the fluids and replaced the tires. I did not wash the bike, but did a short video about the raffle while walking around the machine that had been sitting still for the last 8 weeks.

I don’t usually get attached to bikes, I’ve had 40 of them over the years, and because the last two were basically the same exact models, it wasn’t hard to swap them out. Now that I am riding a totally different style of bike, I was sad. I almost had second thoughts about the raffle all together. I was going to miss Curechaser II, as it added another 122,000 miles to my incredible journey without a single hick-up.

I wonder what will become of Curechaser II. Will it be striped of it’s decals and accessories, normalized and just enjoyed? Will it be used for spare parts for a newer bike because it has so many miles on it? Will it find it’s way to a private collectors garage or museum?

Zac Rhoades became The lucky winner of Curechaser II, and the delivery route was only about 100 miles; just up the road in Vermont.

I am thankful to all who took a chance and supported the raffle, and to those who are waiting for me to raffle off the new bike, my Yamaha Star Venture, don’t hold your breath. It’s sticking around for a bit.

Last I heard of Curechaser II, it was being enjoyed as is, romping around the backroads of Vermont and that makes me happy!

Longhaulpaul 

Mile Marker 330,251

 Check out my Youtube channel and Facebook posts for updates!

http://www.facebook.com/longhaulpaulusa
http://www.youtube.com/c/longhaulpaul

Longhaulpaul.com

In February, I received a call from Bridgestone, one of my sponsors.

They informed me they were having a press launch for the latest adventure tire designed for bikes like my Super Tenere and wanted to know if I could join them. Because I was one of the bigger personal consumer of adventure tires and they considered me a social media influencer, they wanted my opinion and thoughts on the redesigned Battlax A41.

 

The launch was taking place the same weekend as Daytona Bike Week, and I was also supposed to be at a patient conference in Boston. Hanging out with Yamaha and maybe getting them to present a new bike to me was a big deal I didn’t want to miss, and attending the patient speaker conference in Boston was important because it was the only time I get to hang out with other MS advocates who share their stories at patient events, just like me. I wanted to be at all three events, and eventually came up with a plan. I would spend a couple days in Daytona, ride back to Boston to attend the first two days of the conference and then head right to the airport to make the Bridgestone press launch. It took a while for it to sink in that the event was taking place in Ouarzazate, Morocco. I remember hearing something about Madrid, but not until I accepted the offer and started looking at a map did it hit me that I would actually be riding motorcycles in Africa!

If you have been following along my journey, you know I always ride my motorcycle to all of my events, no matter the distance from my house. My story of finding something in life that you love to do and to make it more important than your disease is very real for me, and long distance travel by motorcycle is my passion. I am almost a third of the way to my million mile goal. So, not only do I never use airplanes for transportation, I have never left this continent! 

 

This trip to Morocco was a big deal for me. The company was flying two dozen of the top motorcycle journalists from the US and Canada for a coupe of days to test out the new tires. One day etching the Sahara desert and one day through the rural towns and paved beauty of Ouarzazate. I was going to be rubbing helmets with magazine writers I had been following for years. It was a chance to tell my story and grow some interest in my journey. My only worries for this trip were getting confused in the airports because I was unfamiliar with how they work and not being able to keep up with the journalists during the rides.

 

 

 

 

My wife doesn’t ask for much. As I travel all over the country she continues to go to work, clean the house and do all the yard work; all while keeping an eye on my live tracker. Just about the only thing she asks me when I find myself at a famous location or national park, is to pick her up a rock from the area. Not a diamond, an actual stone. She has dozens of these stones from all over the country and Canada. She remembers where each stone came from and the trip it represented. Of course, Elin wanted me to fetch her a rock from Africa! 

Arriving in Morocco by charter plane was the first chance I got to chat with the others on the trip and I soon learned although these writers spend a lot of their time together going to events and launches, they seemed really excited to be in Morocco. I mentioned how my wife wanted a rock from Africa and they all assumed my trip was going to be very expensive! 

 

We were treated to a great meal, a presentation about the technical aspects of the new tires and an itinerary of the next couple of days. Day one was 200 miles of gravel and I chose to ride one of the Honda Africa Twins. It was a fun bike, lighter than my Super Tenere, especially considering all the added accessories I travel with! I was able to keep up with the crowd and was surprised at how well the tires handled the dirt roads at freeway speeds.

Aaron Colton – stunt rider

The scenery was incredible, the guides who led the group were FAST and fun and after a few hours we switched bikes and stopped to get a drink at a roadside cafe.

 

I met some kids on bicycles who were excited to see our motorcycles and I offered some of my Longhaulpaul wristbands to them. Thy say Chasing the Cure on one side and my social media tags on the inside.

I give them out at bike shows hoping riders will subscribe to my YouTube and Facebook pages. (Have You?) Each of the kids accepted the bands with a smile and a thumbs up. Three weeks after returning from Africa, I was ecstatic to receive a friend request on Facebook from one of my new friends! 

We actually met lots of kids along our rides each day and they were overly enthusiastic to throw out a high-five no matter how fast we were riding by them.

 

 

After another few hours riding we stopped for a photo shoot in the mountains and while waiting for my turn to be filmed, I was able to buy a few items from a man selling goods on a blanket in the middle of nowhere. A bird and a small jewelry box made of soapstone were items I knew my wife would like and would fit in one of my Aerostich Cousin Jeremy jacket pockets. I was shown a black rock, which when opened beamed beautiful purple crystals.

 I wasn’t going to buy it until someone reminded me I was supposed to buy my wife a rock from Africa. I dumped out a pocket full of ordinary Moroccan stones I had been collecting and replaced them with my new baseball-sized black beauty. 

 

 

 

Day two was riding sport touring bikes outfitted with Bridgestone’s new T31 tires on the streets. Once out of the small towns, we rode at should I say, a very brisk pace.

 

 

 

 

I was having digestion issues all day, not sure if it was something I ate or nerves from riding at the edge of my comfort zone on an unfamiliar bike for 200 miles. After we returned to the hotel I really felt something wasn’t right and the pain began radiating across my abdomen and lower back.

Ouarzazate was the back drop for many movies like the Mummy, Lawrence of Arabia and Gladiator, so we shared our last meal was at the famous movie museum which was a short walk from our hotel.

My pain continued to intensify during dinner and I excused myself from the big rectangular table repeatedly. I actually was worried the setting not only looked like the last supper, it might just be for me.

At one point, the journalist next to me asked if I was feeling OK. I was silent, sweating and not touching my food. I tried not to draw attention to myself, everyone was laughing and enjoying the meal. When it finally dawned on me what was happening to me, the fear of trying to get emergency medical treatment in a different country was almost equal to the pain I was suppressing.

I could no longer sit, I had to stand, but was now holding pressure to my side in agony. I went to the men’s room for the fourth time, trying to figure out my options while not passing out. 

Of all the places in the world to have my next kidney stone, Africa was probably not the best choice. 

I missed most of dinner, but somehow made it back to the hotel. The pain was all to familiar, it definitely was a stone. I asked the desk clerk for aspirin, ibuprofen or Tylenol; anything for pain. I must have looked pretty bad because I was told they wanted me to see the doctor. All I could think of was Bridgestone being charged for some extreme medical consult or my ambulance ride. This was my first time at one of these press events and I didn’t want to be remembered as THAT guy.

Dr. Mustafa was the house doctor, and decided we needed to send a boy to the pharmacist to smoosh up some compounds to help my tummy. He thought I was constipated because I was telling him how I felt earlier in the day.  As I sat waiting for him to finish with another patient, my pain dissipated in a matter of a minute. I felt my forehead and it was no longer hot. I stood up and did not have the acute sharp pain. I thanked the doctor for his help, but said that I was feeling much better and would not need the prescription filled after all.

By the time I reached my room the pain in my back was completely gone. Not wanting to spoil my last night in Morocco, I decided to venture out to the hotel bar and have a few drinks with my new riding buddies. Some of them had noticed my condition at dinner and were equally amused and relieved to hear my story of how I had picked up a stone for myself in Africa!

-Longhaulpaul

Please make donations in recognition of my million mile journey Chasing the Cure HERE

 

YouTube Videos from my Africa Trip. Please subscribe to my Youtube channel!