Mile Post: 180,00  195,000

 

 

It has been four years since I concocted a million mile motorcycle journey for Multiple Sclerosis and I thought today might be a good time to take a moment to look back and evaluate my mission.

 

I know I have 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 mile per year plan, but I have managed to document riding 195,000 miles for MS across the United States and Canada so far. If you consider the average motorcyclist rides 3,000 miles a year, I’ve just racked up 65 years of riding. I have burned through 27 sets of tires, over 5000 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 with the help of MS5000 riders and supporters, we have raised  $90,000 for the National MS Society. Thanks to opportunities from multiple pharmaceutical companies, I have been able to share my story at almost 200 MS patient programs from Florida to Alaska, Maine, California and almost every state in between.

 

 

Amazingly, no one has questioned my traveling to every single event by motorcycle. I have 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 inquires about sharing my Also Ran presentation at colleges and conferences.

 

 

With the help of National Powersports Distributors in NH, I was able to set a world record by being the first person to ride 1000 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 world record attempt was stalled by lack of funding and employment issues, I have not completely given up on the plan to ride 50,000 miles in 50 days. I have new fundraising ideas as well, like riding a chopper coast to coast in 50 hours and a few other ridiculous feats in the works, so stay tuned!

 

 

 

I may have started as a man with a bike and a half-baked idea, but my determination and perseverance has now garnered respect and gear and equipment support from motorcycle industry leaders such as Yamaha, Twisted Throttle, Bridgestone, Spectro Oils, BMS 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 me and my journey; I am humbly appreciative.

 

 

 

 

 

 

 

 

 

I have 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 have appeared in multiple motorcycle gear and accessory catalogs as well as the subject of corporate inspirational email blasts to hundreds of thousands of people. Thousands of followers visit my website, reading my blog or just checking my live SPOT satellite tracking page to see just where the heck I’m heading next. Yamaha has begun inviting 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 Multiple Sclerosis.

 

 

 

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 fifteen to eighteen hours at a whack, trying to make it to my next scheduled event. Thousand mile days blend into each other as I race time and the uncertainty of a progressive disease.

 

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 motions 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 million mile journey is for all who have been struck by this unpredictable disease.

 

I battle my MS symptoms almost daily; fatigue, cognitive issues, heat intolerance and my latest inconvenient symptom I now refer to as RBS or Restless Bladder Syndrome.

Besides my body, I have also beaten the snot out my bike and most of my gear. I do not have any fiscal sponsors (although I plan to sell advertising space on my bike soon).  My out of pocket expenses for this endeavor are double the honorariums I collect from speaking engagements. 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 of the amount of presentations I get invited to speak at, and at some point they may stop all together. 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 surviving financially at home. While I’m going there, I might also mention I am also coming up way short on my share of the work in and around our 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 4-year mark a ‘B-‘. My journey is growing 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 more frequently. I believe encouraging folks to find something to be passionate about and make it more important than their disease is really helping. The warm and fuzzies I get every time I leave an event where I was able to make a difference medicate my soul and treats 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.

I must continue on.

 

 

Publishing my life’s story, setting new world records and 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, increasing exposure and funds raised for the MS Society exponentially. I take great pride in knowing some of the money we helped raise was used to fund stem cell research which shows great promise in actually STOPPING and possibly REVERSING Multiple Sclerosis damage.

 

 

As I travel around to different regions of the country, I see folks who have lived decades without treatments or quality care and suffer with 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, understanding the uncertainty of what may still happen to those of us lucky enough to slow the disease down for a bit. Today, MS is an incurable progressive disease that damages the central nervous system. The remedy, by my calculations is only 804,000 miles away and that is why I must continue riding as fast and as hard as I can;

Chasing the Cure.

 

 

Longhaulpaul

 

Thanks to these companies who have supported my journey, while asking nothing in return.

Yamaha

Twisted Throttle

Bridgestone

National Powersports

Aerostich

Spectro Oils

Bill Mayer Saddles

Eazcycles

Globalstar

 

Name Dropping

By the Spring of 2005, I was being bothered by tingling, weakness and had lost some dexterity in my hands; but it was my failing memory that scared me enough to seek answers. For two years I had been secretly struggling with cognitive issues, fuzzy thinking, trouble making decisions, multitasking and short term memory issues. My kids laughed when I tried to order a pizza and I couldn’t remember our own address. I laughed too, but deep inside I was scared. Something had changed in my brain, and I was becoming forgetful, confused at times and had gotten lost driving on what should have been familiar roads. At times I was unable to even answer simple questions. I got frustrated and angry at myself and others around me.  I tried to mask and hide it,  but I secretly feared  I was going insane. Having recently been awarded custody of my kids, I feared losing my mind, would certainly lead to losing my children.

 

 

 

Cognitive issues in MS patients are common, and most of the time they remain minor and manageable. However, when it is your brain that goes to mush at the most inopportune time, it really sucks! I spent the first seven years after my diagnosis hiding my memory deficits. I struggled with multitasking, retaining information and names. My cognitive issues caused me collateral damage in the form of anxiety and extreme exhaustion and I was pretty sure they would cause me to lose my ability to support my family.

 

 

 

Today, as I travel the country sharing my story, I explain my cognitive difficulties freely with my audiences, family and friends. I try to make light of my symptoms and have a funny quip always on hand for when I get caught in a brain fog. I don’t fear losing my job or my kids who have grown up and moved out. I have learned ways to work around my bad memory such as exercise, using a smart phone and planning my day better. The exhaustion caused by worry has been reduced and I have come to terms with my limitations, but there are still times where my diseased riddled brain writes checks even my witty humor can’t cash.

 

 

 

Such was the case at a recent motorcycle convention where I was unfortunately reminded how much damage my immune system has created, chewing away my brain and leaving gaping potholes.

It was exciting, being invited to display my motorcycle inside with the big dogs and sharing my story and quest to ride a million miles on my Yamaha. I would have the opportunity to see and meet racing legends and representatives from all the major motorcycle product manufacturers and retailers. It was another opportunity to find and secure new sponsors as well as thank the ones already supporting me.

 

 

I spoke at a pharmaceutical sponsored dinner for people living with MS the night before the convention and coincidentally was delivering a talk in the same city on my return a few days later. It was a decent crowd, the doctor who spoke was energetic, personable and we chatted a bit afterwards about my adventures.

 

After a leisurely ride the following day to my hotel, I began my preparation routine for the convention, looked at a street map to make sure I knew how to get to the center and copied the venue’s floor plan onto my phone. My bike was ready with brochure holders in place, I had snacks and drinks in my backpack and I set my clothes and medications out for each of three days. I knew I would be tired each night and getting these things done now would save me from having to endure a game of indecisive brain ping pong later.
I arrived at the convention center but somehow entered on the opposite side from where the event was and walked at least 50 miles throughout the building to get to the right place. I then had to retrieve my motorcycle and get it to the proper loading area. I was tired and hot, and the convention had not even started yet! After settling in, I noted where my booth was in relation to the entrance and went to find a restroom. Leaving the restroom, I couldn’t remember what I had just made a mental note of, and proceeded to get lost getting back to my bike. It is hard to explain, but looking up and around in a noisy crowded environment, all the banners, booths and people appear to be familiar and unfamiliar to me, all at the same time.

 

It wasn’t until the third day that I finally was able to find my way back to my booth without the help of someone else. It wasn’t that I didn’t remember I was located three rows back from the middle of the front entrance, I just couldn’t trust myself as to where the front entrance was. I would walk half way there and stop, think I recognized another path and switch directions. If I had been wearing my SPOT tracking device, I would have created quite a bit of entertainment for my followers!

I slipped away from my booth to visit Tex Mawby, who at the time was president of Gerbing Heated Apparel. Gerbing has been making heated motorcycle jackets and gloves for decades and was the brand all others compared themselves to. Without heated gear, I would never be able to ride comfortably in the winter season when temperatures can go below zero. It is so important to me, I carry a spare set in my saddlebags from December through April!
I thanked Tex for donating gear as prizes for my fundraisers, and we talked about my journey and the history of heated gear. He showed me a few of their new products, asked me my opinion and gave me one of their new wireless controllers to test out. “Promise me, if you write a review of my stuff, you must be completely honest. No BS, tell it like it is. I want to know the truth”. We shook hands and I agreed.

The day ended in an auditorium with a keynote delivered by the CEO of True Value hardware stores. It was a long hour, but interesting and an opportunity to collect pointers to improve my own presentations.

I arrived early the next day to find the doors were not yet open, so I sat outside drinking an overpriced cup of coffee. The man who had delivered the keynote the night before sat down across from me and I gave him a short wave. A minute later I decided to sit next to him and engage him in conversation. I expressed my gratitude for his talk, admiration of his speaking abilities, and relayed an experience I had at his company. I then went into detail about who I was and what I was attempting to do. I gave him my card and then we discussed touring motorcycles. After about 10 minutes, the doors opened and we went our separate ways.

About two-o-clock in the afternoon, A chill ran throughout my body. I was telling someone about my chance meeting with the CEO when suddenly I had doubts about who it was I had actually been speaking with that morning. In a dreadful, Dear God fumble for my cellphone, I googled the CEO and felt my stomach climb into my throat as his profile appeared. The man who I praised for a great speech and shared my entire story with that morning looked nothing like the picture staring at me from my phone. To my horror, I realized I had made a terrible mistake and had introduced myself to TEX MAWBY, from Gerbing. The man I had spent 30 minutes talking with the day before.

I knew this was a doozy of a screw up. An extremely rare moment, I was seriously embarrassed. I finally got up the courage to walk over to the Gerbing booth and wait patiently in a line of customers to eat crow. The look Tex shot me when it was my turn at the counter was a cross between quizzical and condemning.
“That was you in the lobby this morning wasn’t it?” I asked.
“Yeah.”
“And I thought you were someone else?” I added.
“Ah, yeah, That was a bit weird. Didn’t know what the hell you were talking about and then you gave me your card again.”
“Well I am here to apologize, I am quite embarrassed and blame MS and it’s effects on my memory.” I apologized over and over. Not sure he understood until later that evening when I spotted him at a bar in a restaurant and he smirked and waved at me with a solitary finger. Only then did I start to feel a little better. His gesture was meant for my disease of course, not for me.

On the final day of the convention I had been asked to do an interview. A noise in the background caused me to completely lose my concentration and I was unable to answer simple questions. I couldn’t even recite the saying that is on my brochure and on the back of every one of my business cards. The interviewer had memorized it and fed it to me word for word.

 

I once heard a cure for MS was a million miles away,

so I thought I would just go get it, and bring it back.

Clearly I need to ride faster, because days like these are becoming more frequent.

Of course, this week of memory faux pas would not be complete until I arrived at the MS dinner on my way home after the convention. I was stopped short while trying to introduce myself to the physician,

“Paul, we did a talk together last Thursday, remember?”
“Of course I do!”

No I did not.
As he presented the slide deck, talking about MS symptoms, I desperately wished I could remember, but I’d swear I was hearing him for the very first time.
I often joke my memoirs will be titled, No Recollection, but sometimes it isn’t so funny.

 

 

For all the family, friends and acquaintances I have hurt by not remembering things we did together, thoughtful conversations we had, your name or even who you are, please do not take it so personal; I have a doctor’s note. My inability to remember doesn’t mean you are not important to me; you really are. Although I may look so good, hidden symptoms of MS like fatigue, chronic pain, bladder dysfunction and cognitive decline can be real pains in the ass to live with.  These daily reminders however, also fuel my drive to continue  Chasing the Cure.

 

Longhaulpaul

I heard the noise, I just wasn’t listening to it.

If you search the internet forums, you can find anything and everthing you want to know about anything, motorcycles included. When my bike makes a giggidy-giggidy noise on the left rear side, I can find the cause, the part numbers, the best price on parts and a video of how to repair it- all in about 60 seconds. 

The Yamaha Super Tenere Forum is an exceptional place to learn all about the bike I ride.

 

The Yamaha Super Tenere has a reputation of being bullet proof and that is why I chose to ride one on my quest to document a million miles for MS. My responsibility to the engineers is to wear out the motorcycle and find it’s breaking point. My reputation of pushing gear and accessories way beyond their normal use or life expectancy is a task I take seriously and I’m pretty damn good at it! The mere mentioning of my name will usually void most factory warranties. What the industry calls neglect and owner abuse, a good friend of mine simply calls; Pelland miles.

 

A couple riders reported having issues on their 2012-13  Super Teneres with a part called the timing chain tensioner. A small spring loaded piston that puts pressure on the chain that connects the crankshaft to the camshafts. The chain ensures the valves open at the precise time the pistons are in position. Engine speed, temperature and wear will all cause minor variations in the chains length, so the tensioner, as it’s name implies, applies steady pressure to the chain to take up the slack.

On a couple of high mileage bikes, the tensioner stopped adjusting and the engine chattered loudly with a loose chain. A loose chain could eventually result in engine damage. Around 80,000 miles, my chain started to make quite a bit of noise – but I ignored it.
25,000 miles later, heading to West Virginia after sharing my MS journey with a large group of people living with MS in Florida, the noise suddenly got noticeable louder. I realized I might have waited just a bit too long to do something about my timing chain noise. It was so loud, I walked my bike to park it in front of my cabin at the Blue Ridge Motorcycle Campground. 

 

I was on my way to speak at a weekend motorcycle rally organized by ADV Motorcycle Magazine. ADV stands for adventure riding, and if riding a million miles for Multiple Sclerosis was not an adventure, I don’t know what is!

 

I continued on my trip despite the bike begging me to give it some attention. About 50 miles from the Rally, the bike started making a loud grinding noise; a sound you hear right before catastrophic engine failure. I was pretty sure the chain had now loosened enough to skip a few teeth and the valves were clanking against the top of the pistons. If I were to toss all the nuts and bolts I ever misplaced while working on motorcycles for the past 30 years into a running engine, well, that would be the exact sound I was hearing.

I slowed down some and checked the GPS. It was a mere 20 miles to the rally. I figured I had already destroyed my motor, so I continued on cautiously, massaging my faithful machine closer to the event, preparing for the rear wheel to lock up at any moment. I shouldn’t have been surprised when I heard the explosion. Assuming the motor had disintegrated, I pulled in the clutch to prevent further damage- to my undershorts.

 

 

At 105,245 miles on the odometer, I had my first breakdown, and maybe my last ride on this great machine. A 100k miles on a motorcycle equals about half a million miles on a car; and that’s before multiplying by the Pelland factor!

As I coasted to a side road, I vowed to take better care of my next bike. Maybe even wash it once in a while. I called the rally organizers and reached Erik Stephens, the owner of Twisted Throttle, who was willing to come fetch me with a trailer. He refused my cash offer for his help, and I was left to pay him in the form of distilled beverages. Finding a liquor store was high on my list at this point as well!

 

Erik was attending the rally displaying a couple of bikes with accessories they sell for adventure bikes. On the ride to the campground, I explained I had another MS patient presentation at noon on Monday in Virginia Beach, and another one in central Massachusetts Tuesday evening. I talked about getting a rental car, or maybe a truck to transport my bike home.

 

 

Without hesitation, my rescuer offered not only for me to use one of their show bikes to continue on to my next speaking commitment, but to also trailer my bike back to their headquarters in Rhode Island! I accepted his incredible offer and as we arrived at the rally, I was able to exhale a sigh of relief and inhale some local hops. I am humbly amazed at the help and support I continue to receive along my journey, from companies, friends and even complete strangers. Twisted Throttle has supported me since day one with thousands of dollars in safety and comfort accessories for my bike.

I was scheduled to give my presentation of ALSO RAN on Saturday afternoon. The presentation is based on my 2001 adventure riding an antiquated Russian motorcycle in the World’s Toughest Motorcycle Competition. I share how that experience prepared me for life’s other challenges, like living with MS.

My audience was a bit on the light side, most of the riders were out enjoying the local trails and roads. It was probably a good thing; the heat of the afternoon was a bit more than I had anticipated and began to unmask my MS symptoms. I was a bit confused, had trouble setting up my presentation and had some periods during my talk where I lost my place or train of thought. I felt overwhelmed with fatigue and because of the heat, my right leg started to twitch and drag. Damn you MS!

After finishing my presentation, I concentrated on solving the broken bike situation. I decided to pull off the motor’s side cover to evaluate the damage. To my surprise, the timing chain and tensioner were intact and not the culprits. The rattle that started 25,000 miles ago, the loud grinding and the explosion were actually caused by the clutch basket coming apart. Just by shaking the clutch assembly I could hear the parts rattling.

A quick look at a parts manual PDF on my phone and a pleading call to my new friends at Yamaha returned a promise of parts being expedited and shipped in time to greet me when I arrived at Twisted Throttle’s shop; all at no cost to me. Incredible support from another great company. I prayed the clutch repair would be enough to get a few more miles before having to purchase a new bike; especially considering I still had two and half years to pay off the loan on this one!

 

Sunday afternoon I left on the loaner bike and visited with my brother James who is a Major in the Marines. My talk on Monday in Virginia Beach went on without a hitch, but I began to doubt the clutch parts I had ordered might not be enough to fix the issue; after all, I had yet to discover what caused all the grinding or the bang!

The borrowed bike was a Kawasaki KLR650, a big dirt bike with knobby tires. It was about half the size and power of my bike, hardly any wind protection and no luggage. It was surprisingly fun to ride however and I had no real comfort issues for the two days I rode it.

 

 

When I arrived at Twisted Throttle Tuesday morning, I was handed my package of parts and given free use of their state of the art repair facilities.
Upon dismantling the clutch, I found the rivets holding the clutch basket had pulled out and the clutch assembly had actually come apart.

 

 

I’m sure it had nothing to do with riding it rattling loose for so many thousands of miles! The inner side of the engine case had been chewed up pretty badly and large chunks of the clutch basket had broken off- I’m sure those last loud 250 miles with the metallic melody playing was just a coincidence.

 

 

A spring had broken loose and had travelled around the internals for a while before jamming itself into the transmission shift mechanism.

 

 

A half cup of aluminum shavings, steel bits and chunks of springs were retrieved from the oil pump, sump and pan. It was not a pretty sight.

 

 

Having the new clutch basket in hand, I felt I had to at least try to see if the motor was salvageable. I sanded the raw gouges behind the clutch and straightened the shift linkage with a pair of pliers.

 

 

I ran a magnet up and around the pistons and connecting rods. I then sprayed high pressure cleaner and air, trying to dislodge the shrapnel. I think I got all the big pieces.

 

The staff at Twisted Throttle watched me work, shaking their heads with little hope the engine would ever run again. I reassembled the motor and with fingers crossed, started it up. Amazingly, it purred like a kitten! Only after hearing it run did I dare send pictures of the damaged engine internals to Yamaha, who responded with,

“And you decided to still fix this?”

I changed the oil, let it run and checked for leaks before declared the operation a success.

“Yeah, I fixed it, I fixed it real good!”

I beat the snot out of this machine, wrote it off as done and it just keeps amazing me.  The Yamaha Super Tenere continues to be the best bike I have ever owned!

Before heading out to my next talk, I sought out Twisted Throttle’s owner and expressed my gratitude for his enormous help. Erik asked how I liked the KLR and I shared how fun it was to ride a small bike and that I was surprised how well it handled the 700 hundred miles of I-95.

“The only minor issue I had at all was at the very last toll booth in New York. I think the EZPASS transponder wasn’t working because I heard the alarm go off. It worked fine through all the tolls in Maryland, Delaware and New Jersey.”

With a slightly confused expression on his face, Erik slowly responded,

“Paul, our bike doesn’t have a transponder on it.”

 

 

-Longhaulpaul

Bike #1 is still on the road with 137,000 miles on it!

Bike #2 arrived courtesy of YAMAHA at Christmas and is being accessorized with tons of goodies from Twisted Throttle, a custom seat from Bill Mayer Saddles and a custom auxiliary fuel tank from EAZCycle.

 

Please consider supporting my journey by sponsoring a rider in this year’s MS5000. 50 days for MS, April 1st through May 20th.