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Riding Gear Can Help You From Wearing Your Heart

(or other organs) On Your Sleeve

 

It’s not how you look, it’s how you feel. Christmas arrived at my front door this week by the guy all in brown.

“Mr. Pelland?”

“Lucky guess.”

“Sign here.”

“Hey, weren’t you wearing that same outfit yesterday?”

” Uh, have a nice day, Sir.”

 

The box contained a much overdue replacement for my beloved but aging riding gear. Although any riding gear is a great improvement over street clothes or no gear at all, having quality gear that functions just the way you want it to, in all types of situations and weather, and does so without complaint for hundreds of thousands of miles, is like finding hay in a stack of needles.

My brown box contained a new Aerostich Roadcrafter suit and a pair of Aerostich Combat Lite Touring Boots.

This new gear is the stuff dreams will be made in.

 

 

The Satin and Leather Chaps Years

In 1994, I joined my first motorcycle gang, The American Gold Wing Association.

I will never forget pulling into the parking lot of the Nights Of Columbus for the first monthly meeting. It was April, and there were quite a bit more Caddy’s and Crown Vic’s in the lot than motorcycles. I parked and took off my half-helmet. I was a bit nervous, after all, I was only riding a Honda Pacific Coast 800. I sat at one of the long tables next to a Goliath of a man with an even bigger grin.

He turned his head ever so slowly and said, “Well, hello, are you a new member?”

“Yeh, I signed up at the bike show in March. I hope this isn’t going to be like the last gang I joined, I had to kill two people just to get a jacket.”

His eyes got quite large, he hesitated, then shook my hand firm till it hurt.

“This will be an interesting year.”

I later learned Paul was the Captain of the local Police Department!

Paul was usually the tail-gunner (who disappeared quite often), and every ride started with a question on the CB radio, “Nice day Huh?”

His reply was always, “Ahh yeah, any day you can ride is a good day.”

Paul was one of the good guys, and now he’s riding motorcycles and watching over the rest of us.

 

The club forced me to get pinstriping on my bike, flags on my antennas, wind-wings and leather tassles on my clutch and brake levers.

I had a CB, AM/FM/WB stereo cassette player, ditty bag pouches and a matching rear trunk.

 

Please do not judge me.

 

PC 800 1994 001 (721x1024)

Those were the days of 50 motorcycles riding the giant slow snake down the highway, everyone in matching jackets and listening to “Ten-four Good Buddy, everyone made it to Dairy Queen. Over.”

Slow moving intimidating bikers as far as the eye could see.

Slow moving intimidating bikers as far as the eye could see.

 

I don’t think I have been passed by a car on a back road since those early days. Not that being in a club wasn’t fun at times; like watching someone clean and re-clean $47,394 worth of chrome plated useless plastic bike-tackle at every gas stop while the rest of the gang had to wait.

Or, the day I earned my CB handle; about twenty of us were led into a one-pump Texaco for gas, and as we were all waiting for the next rider ahead to fill up, a gentleman in a Ford Explorer gawking at the line of bikes, ran into me. They called me Pushover after that.

 

Slow Race 1995?

 

There was a riot at a national get-together in Pennsylvania after I won the slow race, I was then disqualified because I was under-age and my bike was not a Gold Wing. Soon after, I was no longer a prospect, and I had to get a real Hog. I traded the PC for a used six cylinder Wing.

 

1994 GL1500, and no, I did not add the ring of fire myself!

1994 GL1500, and no, I did not add the ring of fire myself!

 

I didn’t know much about protective gear, we had to wear our ‘colors’ and represent, and my gear did not have padding. I wore a satin jacket with my name and AGWA logo embroidered on it for the Wednesday night ice cream rides, poker runs and club meetings. A leather jacket was used in the colder months, as well as a pair of leather pants I had commandeered from work. A half helmet with a zip in skirt for the winter, some gloves occasionally, and cowboy boots with thicker soles so I could touch the ground those first few years; was all I wore riding.

 

 

The beginning of the Cordura Years

After four years of drugs, murder, pilaging villages and bake sales, I turned informant and escaped the clutches of the motorcycle gang, shed my maroon satin AGWA jacket and my CHiP’s two-tone half helmet. I had learned about this long distance riding thing and after reading Ron Ayres Book, “Against The Wind” and sold my GL 1500 Gold Wing. I bought a BMW, because everyone knows serious riders ride BMW’s. I joined the Yankee Beemers Motorcycle club and began to experience a whole different way to ride motorcycles.

 

I had a Tour Master Cortech Jacket, and for the first time had some padded protection and a jacket that was waterproof. The jacket served me well, it was made fairly well and had a removable quilted liner, but I couldn’t wear it in the summer as it did not breathe well, it was basically Cordura nylon( from Dupont) that had been coated on the inside with plastic. I don’t know how many little Cordura animals were killed to make the jacket, but at least it wasn’t cows or naugas, and it was a step up from the leather and lace.

 

Shortly after joining the Yankee Beemers I realized every hard core rider was wearing riding suits referred to as simply a ‘Stitch’, by a company called Rider Wearhouse. Aerostich has now become the trade name of the protective clothing and you won’t find it sold at any motorcycle shops or dealers. To keep the costs down and the quality up, all sales are done by the manufacturer. The one or two-piece suits are called ROADCRAFTER. At the time, the suits were about $700 I think, and although it was clear they were worth every penny, I didn’t have every penny. These suits were made to last, your average riders may only need one or two their entire lifetime! The material was waterproof and breathable Gore-Tex bonded to Cordura, but in a heavier, coarser weave or denier as it is called. The stress points are all covered in extra heavy duty ballistic Cordura. The knees, elbows and shoulders were all padded with a special viscoelastic TF2 or TF3 energy absorbing foam and hard shell top. The idea was simple. An abrasion resistant Gore-Tex suit, heavy ballistic nylon with top of the line craftsmanship, all made in the USA. The Roadcrafter has probably saved the skin of millions of riders and cows worldwide! It wasn’t a jacket that did all kinds of tricks when you turned it inside out. It didn’t have a secret hidden removable reversible hail-retardant system or flashy stripes, logos or doo-dads. It didn’t even have carbon fiber flavored shelf paper knuckle inserts. It wasn’t advertised as a convertible three-in-one system with removable layers, or a rain layer that you have to stop and put in after you are already wet! It was just a protective “cover-all” leaving you to decide what you needed under it. It was built tough, and had real world usable features and some pretty good venting for the summer. Although competition or racing leathers were still more protective and abrasion resistant, a ballistic nylon suit lasted longer, was washable, waterproof, breathable, cooler, and lighter. Ballistic nylon was really the only choice for every day real world long distance riding. All the real riders were wearing Aerostich, I just had to have one.

I saw an ad for a two-piece Aerostich Roadcrafter in the classified section of the “Boxer Shorts”, the monthly Yankee Beemers magazine, and although the listing said the suit had been altered, I think the legs were shortened, it was only $100.00. “Well used” it said. I bought it, and the jacket fit, but the pants were about five inched too short! I didn’t care. I wore the jacket. It was broken in, well broken in, I think the ad said about 100,000 miles worth, and I think he was a little short. It was solid though, I sprayed some water repellent on it, and despite the pinkish hue, it was My first introduction to quality motorcycle gear. Thank you Steve!

 

1999 Stich Early 001 (1024x695)

 

The 2002 Aerostich catalog has two pictures of me wearing this light red jacket. In the upper right corner, I am standing on a ledge with my best friend Dave on a trip to Georgia. At the bottom left corner, I am climbing a rock wall that says. “Do not Climb.” Aerostich suits give you special powers.

 

2002 Aerostich cover

 

 

The first Roadcrafter Jacket was fine for a while, but it really was worn, and after receiving word my entry into the Team Strange 2000 Buttlite 7 day rally was accepted, I knew I had to buy some new gear. It had to be a new two-piece Roadcrafter. I wanted to be as visible as possible, so this was my choice!

Can you see me now?

Can you see me now?

 

 

 

As you can see from the next picture, I was already aware I was entered in the 2001 Iron Butt Rally, proudly displaying the Siberian Speed Team logo!

Just prior to leaving for my very first Long Distance Rally, the Teamstrange Buttlite IIa 7 day, 7,000 mile event.

Just prior to leaving for my very first Long Distance Rally, the Team Strange Buttlite II
a 7 day, 7,000 mile event.

 

 

I broke in the suit during the 2000 Buttlite II and although my BMW never finished, The Roadcrafter and I did finish; aboard a Honda. The color either broke in a little or was just dirty after the first 50,000 miles!

2000 BL II Honda Exchange

 

 

 

The suit was getting broken in properly and spent many thousands of miles on my back, and then on the ground as I shoveled a few Ural motorcycles across the country in 2001.

Although to the untrained eye, the next picture would seem to signify I had discovered a waterhole oasis or a beautiful woman in a red sports car signaled me to pull over and make wild passionate love to her in the rest area clover field, it just isn’t so.

This picture is just another breakdown during the 2001 Iron Butt Rally. The Dooney and Burke purse is mine, I used it for tools!

 

The suit is so tough, it can be flung across a gravel parking lot and used as an emergency blanket when the sun goes down.

The suit is so tough, it can be flung across a gravel parking lot and used as an emergency blanket when the sun goes down.

 

Although it would appear I was being abusive to the expensive suit, this method is actually listed in the break-in procedure. As any gentleman would, I often used it like a carpet or picnic blanket to hold my tools and parts from falling in the dirt. I had no problem jumping to the ground, laying in the street or dirt to fix something under the bike. Like a long time friend, there was always trust. Trust it would dust off and zip up, and protect me once again.

 

A riding suit is used to protect us from road hazards and to cushion the fall in accidents. If it is made well, and tested, and you like it enough to wear it all the time, there will come a time, a day, a split-second when it has to do it’s job. All the pretty clothes in the world aren’t going to do squat when life is passing before your eyes in the classic “Oh shit” moment!

Mine moment was on a highway in Arkansas, at freeway speeds, my overloaded underpaid Russian camel decided to spit me off.

(From the story, Against a Slight Breeze) “Fully overloaded with tools, spare parts, clothes, food, extra fuel, maps and rosary beads, I had noticed the front end of the bike getting a bit wobbly more and more. Sometime mid morning in Arkansas I hit a series of dips in the highway, and the front end just went loose. Within seconds it turned into a tankslapper (Not to be confused with a knee slapper). It started with a little wiggle, and then the rear end of the bike started waving like a door on a hinge. I knew I was in trouble when I looked to to my left and saw my own ass. I tried to stabilize the violent flapping, but knew it was not going to be pretty. I prepared to crash. With sphincter contracted, I aimed towards the breakdown lane, and that is where the bike decided to spit me off. I tumbled and slid a bit, but not nearly as far as the bike. I watched in seemingly slow motion as it slid down the travel lane. Rich, colorful sparks, unlike any of those Japanese bikes could create, were lighting up the highway. After I came to rest, I did not move for a minute or so, long enough for a trucker to stop and run over to me and ask me if I was ok. I kept thinking about something I learned from a First Aid class, “Don’t remove your helmet, Paul, your brain will fall out.”

Slowly, I systematically attempted to operate all my limbs and head, realizing I was possibly ok. No broken bones. My Aerostitch riding suit had saved my ass. I had some pain in my knees, elbows, ribs and shoulder, and it got a little bit worse within the hour, but I had survived!

I ached over to the bike and shut off the key. The bike was facing the wrong way in lane one. I lifted the bike up, and wheeled it to the shoulder. What a mess!”

 

 

The Roadcrafter suit has sustained some abrasion, knees, hip, elbows, shoulders and holes in the pockets where items had been, but it was not at all tattered. I silently thanked God the creator that I was ok, then Andy Goldfine, the creator of Aerostich. Yes,…….. I think that was the order.

 

A couple days later, or, 30 or 40 breakdowns later, The suit was starting to get that “I’m a real rider” patina……………………..

 

When pushrod comes to shove.............

When pushrod comes to shove………….

 

 

I finished the rally without incident, but the suit had seen better days. The crash had made little tears here and there that eventually grew, and could be “grab” spots in the event of another crash; add in the 90 -100,000 miles I had abused it, and it was time for a new one.

I ordered a grey and black one piece suit, it would be easier to get on and off and would stay cleaner. I entered a bunch of rallies including the Buttlite III, as well as the 2003 Iron Butt Rally. By the end of 2003, it had seen close to 100,000 miles of hard use. It didn’t skip a beat. These suits are the Swiss army knives of motorcycle gear! Every day, every night, every mile, like a good friend, it always had my back.

I got remarried

I got remarried

 

 

Went through 8 bikes, just easy weekend trips

Went through 8 bikes, just easy weekend trips

 

 

For the past 15 years or so, I have had the opportunity to wear some of the very best motorcycle gear made in the world. I have owned five or six sets of other gear, but it is the Aerostich quality, and comfort I always take when I’m on a mission. Having a zipper break or a lining pull apart in the middle of a rally or event can be more than just a nuisance. It can be dangerous. I have worn other high end ($400) summer pants that melted as soon as I put my feet down, where manufacturers should know the exhaust pipes might be on motorcycles! Riding a motorcycle safely is a mission, and having great gear that is darn near indestructible is the only way to go.

 

A few trips with my son, and of course being the dad, I had to let him wear the good stuff.

2009 BRP Trip

 

I also own a Darien jacket and pants set. Also made by Aerostich, the set is unlined and looser fitting than the Roadcrafter. Having two pieces makes it easier to stow away in your luggage, as well as being able to take off the jacket alone. Although it gets worn here and there, I really prefer the Roadcrafter for daily commuting and long distance travel. My Darien set will indeed last a lifetime, I may only wear it 8-10,000 miles a year.

To date, my grey Roadcrafter probably has 200,000 miles on it, and has seen duty on over 20 motorcycles. It is about 12 years old, and is starting to have some issues with wear, zippers and Velcro. So I have decided to delegate it to second string. Time to break in the new one, grey of course! The boots are my first stab at the Aerostich Combat Touring model, and will also need some breaking in. I have been a fan of SIDI leather boots and my last two pair were SIDI, but the regular street versions seem to be wearing out every 18 months. They have started to use vinyl uppers as well, and despite the claims of breathability and durability, I will never trust vinyl boots for real world riding. I was please to see that the Aerostich boots are actually made by SIDI, but are more the adventure style, heavy leather and of course, made to last.

Stitch and I

I have ridden in wind, fog, rain, snow, sleet, and hail;

I have ridden from sunrise, through day and night, to see the sun rise again;

I have ridden through hurricane and tornado warnings, washed out roads and wildfires;

I have ridden through every month of the year, in temperatures from 0 to 120 degrees;

I have ridden through all of the lower 48 states, Canada and Mexico;

I have slept in, pissed in, bled in, crashed in, laughed in, cried in and experienced the last 15 incredible years of riding motorcycles, almost exclusively in my Aerostich Roadcrafter suit.

No other gear I have ever worn comes even close to comparing to my ‘Stitch’ and as I write this, I am contemplating getting an Aerostich tattoo.

 

I will never get rid of my old Roadcrafter suit,

for like a well worn leather glove,

it’s creases and impressions hold the secrets of my soul.

 

 

 

Any day you can ride is a good day,

Longhaulpaul

 

 

 

 

Reflections

 

 Rolling Along

As the first snow has fallen, I was forced to take my wife’s car to work two days in a row. Time to get the  Bike’s cracked exhaust cross-pipe welded and find out why my gas mileage has been equaling the outside temperature. At 28 degrees I get 28 MPG, at 35 degrees I get 36 MPG, and at 50 degrees or better, I get closer to 48 MPG. I have three more months before the temperature gets me back close to 300 miles a tank.  I have the engine oil sensor in the oven and the air temperature sensor in the freezer, with the Ohmmeter at the ready, as I write this.  E=IR is Murphy’s Law.

Well, thanks to my sponsors, supporters and friends, I can say the first 6 months and  14,500 documented miles of the Endless Road Tour have gone pretty well.  From announcing to the world my MS diagnosis and my Mission to ride 1,000,000 miles for awareness, setting a world record, to being #41 across in a national magazine crossword puzzle, is a long way from where I was just six months ago! I was also surprised to see my name listed in Wikipedia under the category of Long Distance Motorcycle Riding! I believe my goal to be riding, writing, and helping others to recalculate their road as my full-time career will indeed become a reality in the next six months.

Thanks to all of you, we raised $4,000 during my 100 SaddlesSore 1000 for the National MS Society where the funds will be used to help find a cure and programs to help MS patients. On April 29th I rode 1000 miles in under 24 hours using 100 different motorcycles!  T-shirts still available here.

Although I have yet to get a motorcycle manufacturer to agree to sponsor my one million miles for MS, I have had a good number of companies believe in my mission enough to step forward with offerings of support and products.

Coolshirt is working with me to design a cooling system for the hot season, and will be available for others who ride motorcycles.

Rocky from Bill Mayer Saddles will be designing custom saddles for the bikes I use in April for the 50,000 mile world record fundraiser.

National Powersports donated countless hours and use of 100 motorcycles as well as $100 from every bike sold towards my first fundraising effort and world record.

Rocket Moto has a new top of the line communication system just waiting to install on my next bike.

LS2 Helmets donated a helmet, which I used on the world record ride in September.

Aerostitch, maker of the very best motorcycle riding gear has graciously offered to replace my beloved but aging riding suit and boots.

Bridgestone has just agreed to be my exclusive tire sponsor, offering me enough rubber to ride 100,000 miles in 2013!  This is a huge help!

Please let these sponsors know you appreciate the support they are giving me.

 If you are interested in advertising or sponsoring my 50/50 ride or my million mile journey, please contact me.

On The Publicity Front

Despite the local newspapers and TV channels not being very interested in my recent record or mission,  in a two-part series (the first time the magazine has ever done so), Ability Magazine really captured my riding and my goals, and they even put me in the crossword puzzle! I was featured both in the October issue and the December issue. An excerpt can be found here.

ABILITY Magazine is ranked in the Top 50 Magazines in the World — and is the leading magazine covering Health, Disability and Human Potential. They are an award-winning publication, distributed by Time-Warner. For over 20 years, their mission has been to provide new insights into individual levels of ability.

MSFocus, the free quarterly magazine published by the Multiple Sclerosis Foundation did a very nice feature article (p.38) on my mission as well.

Adventure Motorcycle put my story in their newsletter as well as in their January/ February issue.  I may be featured in the RideNH motorcycle guide of NH roads, and my record ride was recognized by the National MS Society on their website as well as on other MS sites. Thanks to all who have followed me on facebook as well as Twitter. It was interesting to use social media during my record ride as well as during other extreme ride attempts. Thanks to all who joined my blog Mile Posts, and have signed up for updates. Please continue to pass on  to your friends and family my website. I do try to post to the lists and discussion groups whenever I have a new story, but that has become very time consuming. If you are reading this and have not signed up yet, please do so! No spam, just my reports from the road. Thank you to the few hundred who are signed up!  The website has been seeing an average of 100 new readers a day and 60,000 hits a month!  Thanks to all who help spread my story this year, and if you have a connection, know a guy, or like to write e-mails, I would appreciate any help I can get. The more publicity, the better chances I have of getting a major bike and drug sponsorship which would allow me to take my mission full-time sooner. My ability clock is ticking!

As far as my appearances and speaking tour so far, I have attended about 45 MS related patient events throughout New England, including having my bike on display at the MS Annual Conference and the Annual MS Curefund Health Fair. Although I have yet to be anointed as an official  MS Ambassador, my face is being recognized, my story is getting out there, and I have been actively involved in events.  My first live presentation, comparing riding a Russian Ural  in the World’s Toughest Motorcycle Competition to every day life with Multiple Sclerosis was December 22 at Twisted Throttle in Rhode Island. See details here.  I left the event without any vegetable stains or death threats.  I am working on speaking engagements at other motorcycle rallies and event this coming season. Stay tuned! If you are interested in my presentation for your event please contact me.

TT presentation (1024x683)

I have been asked to write a regular column for ABILITY magazine, and of course jumped at the opportunity! Chet Cooper, the publisher of Ability magazine has really given me a chance to tell my story and my adventure with the world, and I am very grateful! I am also working on multiple articles for other MS and motorcycle magazines.

50K / 50Day -A World Record Attempt to Benefit the National MS Society

My world record ride is soon approaching, April 1st is not a joke. I will be attempting to ride 50,000 miles in 50 days or less, attempting to beat the current record of 31,068 miles in 31 days set by David Zien. For seven weeks I will be getting up at 4:00 am, riding until 9:00 pm, taking a shower and going to bed.  And that’s if everything goes exactly as planned!  Weather, traffic, tummy aches, haircuts, funerals, oil changes, tire changes, valve adjustments, flat tires, breakdowns, accidents, all have to fit into that little equation. The big elephant in the garage is my MS.

As simple as the feat appears when typing or saying it, (50K in 50 Day) reality is really setting in for me.  A couple weeks ago I rode 1150 miles in 18 hours, and I was beat! Having that kind of pace for 7 weeks will be a serious toll on my body, my mind and my disease. Make no doubt about it, I plan to succeed, but stress and fatigue are known triggers for MS attacks.

This attempt will be difficult and dangerous. I am taking this challenge and the risk to my health and finances for my friends with Multiple Sclerosis who struggle daily with disabling symptoms, some who no longer have the physical abilities to do even the simplest everyday chores.  Those who  have lost hope that a cure may come during their lifetime, those who have given up on their dreams, unable to even remember happiness, those who find just getting  through each day an overwhelming hardship, and those who struggle with the question, “Why Bother?”  My ride and my million mile mission is to help them find a way, find a road, find some happiness.

Road Blocks

The first  issue I need to solve very soon is the bikes. I will need a main bike and a spare for when the main bike is being serviced, repaired or getting tires (which will be every 7-10 days). I have written to Honda, BMW, Yamaha, Triumph, Moto Guzzi, Ducati, Suzuki, Kawasaki and Motus. While they all think what I am doing is great,  no one has stepped forward with help. I’m probably asking for the equivalent of a one page ad in a monthly magazine. If I break the record or not, the publicity of their goodwill should get that back ten-fold!

A touring bike, sport touring or adventure style seating position will be required for the long days in the saddle. The bikes must have similar amenities set-ups for long distance, 300 mile fuel range, GPS, communication gear and gadgets, luggage, and custom ergonomics. I’ve got sponsors for most of the add-ons. A nearby dealer, willing to do any needed repairs or maintenance is important as well.

Do you know a PR person who works for a motorcycle manufacturer? Do you think I should be riding your brand of bike? Can you write e-mails?

 My second issue is a big one. By taking off the 7 plus weeks from work to break this world record, I’m pretty much going to be out of a job when I finish, and I had thought  I would be starting my appearances and speaking presentations a couple nights a week around the same time. However, I was just informed by the pharmaceutical company that supplies my current medication, one who had originally expressed  interest in having me be a patient advocate, that they are, “Unfortunately not adding any new speakers to our programs for next year”. A big fat Dead End.  Other pharmaceutical companies have also expressed interest, but “Only if you are taking our medications, could we offer you a speaking opportunity”.  I call Bullshit.  I have been to hundreds of these GREAT drug company sponsored patient educational events, listened to dozens and dozens of patient speakers, Doctors and MS specialists and the information and messages are very universal for the most part, with minor mentions of their medication and benefits, but always combined with listing the other therapies that are available as well.  The MS Doctor giving the talk isn’t required to be on the medications, so why should I as the patient advocate with MS have to be in order to speak? These events are where patients get to interact with other MS patients, learn about new drugs and treatments, and hear first hand accounts of how others are coping with their symptoms.   These are great programs and I know my story and my presentation will work well at any of them.  Big Pharm, are you listening?  I am on a mission, an adventure with a great message, and I need your help to tell it.

It shouldn’t matter which drug I am taking, to help others understand the benefits of getting on a drug therapy to reduce their relapses.

It shouldn’t matter which drug I am taking, to help others find ways to be happy.  My message, my mission and my entertaining story works  for everyone.

Besides, as part of my million mile mission, I’m going to show up at all your events and eat your food anyway, so you might as well take advantage of my goal to help others by using my unique story and my ability to entertain.

Without an underwriting sponsor, the  50K / 50Day World Record attempt will cost approximately $25,000.

My fundraising goal for the 50-day attempt is also $25,000, with 100% going to the National MS Society.

So, as I plan out the next 6 months of the Endless Road Tour my three minor dilemmas are;  finding about fifty grand, a motorcycle manufacturer with a big heart, and a pharmaceutical company with some………. balls

 Christmas spirit.

Damn, the oven beeper is going off, the oil sensor must be ready to test!

New Years resolutions are simple this year:

1) Ride

2) Raise  money

3) Ride harder

4) Tell my story

Peace,

Longhaulpaul

Official Prognosis:  U R a “L

An Interview with Paul Barlow P.A.C. from Derry Neurological Associates of New Hampshire. Mr. Barlow is part of the highly skilled professional team that oversees my Multiple Sclerosis treatment. He also speaks at MS patient support events, and he built and rides an old Triumph.

Paul Barlow P.A.C. Derry Neurological Associates

On a recent afternoon, coincidentally after someone called a bomb threat into his office building, he finally was able to spare a few moments from his busy schedule for this candid interview.

 

Longhaulpaul   “Thanks for taking the time to answer my questions today, Paul.”

 

Barlow  “Sure, I always draw the short straw.”

 

Longhaulpaul   “What is a P.A.C? Is that like a glorified Nurse Assistant?”

 

Barlow  “Glorified Nurse Assistant?  I wish!  They have a union and get overtime. The Physician’s Assistant profession was created to fill a void and meet a need.  During Vietnam, Corpsmen and Combat Medics performed in a similar capacity to physicians to meet the needs of injured soldiers.  When these experienced individuals returned home, there was no equivalent civilian career waiting for them.  They were not nurses, and they were not doctors.  The PA profession was born from this, and the education process was created by physicians, and modeled after medical school.  It currently is 6 semesters of professional education, consisting of 42 weeks of classroom education followed by 42 weeks of clinical exposure.  Doctors, in comparison, undergo an additional semester of each, and then undergo their residency.”   

 

Longhaulpaul  “Didn’t you used to be in construction?”

 

Barlow ” I hung drywall- but not well, did electrical work, concrete resurfacing, sold securities and insurance, worked retail, was in Bosnia for Uncle Sam a bit, was a nursing assistant, worked in cancer and genetic research at Harvard; which, much like sleeping in a muddy foxhole, is cooler to hear yourself say than it is to actually do.  I sold lithographic prints business-to-business until it landed me in jail for a few hours in a small town in Alabama.  I had way too many teeth and my eyelashes were too long for me to survive in prison.   I worked a printing press for a short time; I did whatever fed my wife and four daughters.  I was good at fixing stuff, thinking about problems in my head, and solving them. I had some boredom issues.”

 

Longhaulpaul   “What circumstances made you decide to pursue a new career in medicine and specifically Neurology?”

 

Barlow  “I choose to specialize in neurology for three reasons. First, I was a little paranoid if I went into psychiatry, the person in charge of the door buzzer on the inpatient ward might never let me out.

Second, I was offered a job when I graduated and it sounded cool when I told people I was going into neurology.

The third reason I chose Neurology, and probably the answer you were digging for, is my youngest daughter. My daughter was diagnosed with a neurodegenerative disease when she was about a year and a half old.  Since that time I have had a hard time considering any other clinical focus.”

 

Longhaulpaul  “But unlike a shoemakers kid, you’re making sure your Daughter is getting the absolute very best care and treatments available, and that makes you a pretty amazing Dad. How long have you been in neurology?”

 

Barlow   “I have been in Neurosciences for 12 years and if you count non-human experience, I have been involved in the field in some way for about 16 years.”

 

Longhaulpaul   “Are you allowed to openly discuss your Alien research?”

 

Barlow  “No, but I can discuss the fish brains research I was involved in.  Don’t look so disappointed, the experience with fish helped prepare me to take care of some of my patients, ones like you.

 

Longhaulpaul  “Could you give ten examples why I am your favorite client?

 

Barlow   “No.”

 

Longhaulpaul   “Could you explain Multiple Sclerosis to my readers in medical terms?”

 

Barlow  “Multiple sclerosis or MS, is an immune-mediated inflammatory disease that attacks myelinated axons in the central nervous system or CNS, destroying the myelin and the axon in variable degrees. In most cases, the disease follows a relapsing-remitting pattern, with short-term episodes of neurologic deficits that resolve completely or almost completely. A minority of patients experience steadily progressive neurologic deterioration.” 

 (He looks up from his grandpa reading glasses, sees me accidentally yawn) 

Barlow  “I see that was very helpful.  My eyes are glazed over just by reading that short boring definition from Medscape. I’d rather not have to call for the crash cart, or worse, having the nurse find us both fast asleep on the exam table.”

 

Longhaulpaul  “Yeah, Maybe we should put the lights back on, just to be safe?”

 

 Barlow  “Let me try to put this in the framework of a motorcycle. The central nervous system is the wiring harness on your bike.  Each insulated wire on the bike is similar to a myelinated axon.  The myelin is essentially the plastic insulation, only it’s made up of a fatty substance created by oligodendrocytes… Let’s just call them O cells.   Now, set that information aside.”

 

Longhaulpaul  “Are those new shoes?” (As I get caught staring at the floor)

 

Barlow  “Losing you again? Ok, let’s try this; you ride a motorcycle. 

It was built with insulated wires that are edible to the cockroaches that wander the saddlebags and dark, protected areas of the bike.  These wires or Twizzlers are only edible, or tasty when the conditions are right. 

Let’s imagine you are on a trip, and have packed lots of snacks on the bike and it is getting warm.  The cockroaches multiply like rabbits having 1000 babies at a time, happily seizing the day and living in the moment.  It becomes a cross between insect Woodstock and the endearing movie “Joe’s Apartment”.   The conditions are just right. Sadly, the snacks in the bike dwindle, making the insulation Twizzlers a reasonable option to eat.”

 

Longhaulpaul  (As I sit up)  “Ok, I’m actually following this, candy, fornicating, parties, bikes and roaches, go on….”

 

Barlow  “Like me, Cockroaches, don’t mind the Twizzlers, and when all the other preferred snacks are being devoured by 100,000 of their first and second degree relatives, they begin to look for alternatives.  Partly so Uncle Mickey’s 3000 kids don’t crap their dirty little nugget droppings on them while they were trying to taste the main entree that day, and partly because they just need to eat.

So a few roaches wander from the saddle bag and stumble across some reasonably tasty Twizzlers and start to eat.  Eventually, some of the other more civilized fauna join them and meaningful amounts of protective insulation are lost. 

At some point the bike starts to have noticeable consequences like a flickering headlamp, a gradual loss of battery charge, or an occasional blown fuse. The harness has become compromised, as does the vehicles dependability.

Eventually this particular ride stops due to equipment failure.  You notice that all of your favorite snacks in your saddlebags have been turned into a substantial pile of fine brown granules and empty egg cases.  You wonder if the granules might taste anything like the jerky and trail mix they used to be.  I don’t think even you would eat that, no matter how hungry you were. Would You?”

 

Longhaulpaul  “Probably not.”

 

Barlow  “You see the swarms of roaches and the swollen infested wiring harnesses of the bike.  You see the damage to the wires and it reminds you of a time you had to strip wires with your teeth late at night splicing in a USB jack to power your GPS. You decide blow-torching the insects may not the best way to get them off the exposed wires, and settle on the spray from a self-serve car wash.  You are able to push back the throng of roaches into the hidden recesses of your bags and soak your exposed wiring in the process.  It will eventually dry, and you will avoid making the evening news as a fiery ball of flames on I-95 in whatever state you are in. The water has drawbacks but is better than letting the colony completely devour all meaningful electrical function on the bike.”

 

Longhaulpaul   “Umm, Is this a true story? Because I never wash my bikes.”

 

Barlow   “Try to pay attention.”

 

Barlow   “You park the bike for a day or more until it is dry enough to replace the blown fuses without re-cooking them immediately. You can tape up the damaged wires you can reach but you can’t get to all the problem spots. Hopefully enough soapy corrosion will encrust the remaining exposed wires to prevent further short circuits before the ride is over.  You will be able to replace the entire wiring harness or get a new bike before the next big rally.”

 

Longhaulpaul   “I think you mean the bike is me, right?”

 

Barlow   “Yes, and the harness is a part of you that medical science has yet to find a way to repair, and usually does more harm than good when they do try to repair the damage.

 

The copper wires and electronic components are your brain cells and the insulation is your myelin sheath made by the oligodendrocytes. The roaches are your own over active immune system.”

 

Longhaulpaul   “So, until a cure is found, I have to keep my mangled, cobbled, spliced and corroded nervous system?”

 

Barlow   “Unfortunately, yes. Something has triggered your immune system to target the O cells in your brain and spine.  If you kill off all the roaches (immune system) something worse will occupy the bike and the bike will be no more than a lawn ornament (worm food).  You are left loading up the bike with a non-conductive, nonflammable decoy snack at regular intervals that makes the insulation appear less appetizing. This snack is your platform therapy. Sadly, the medication doesn’t come from Keebler.  It comes in injectable, intravenous, and just recently, tablet forms.  None of the treatments are universally effective and they all have side effects.  These range from nuisance to fatal.  The side effects can include welts at the site of injection, brain infection, liver failure, depression, fatal cardiac events, and various other looming dark clouds. Getting on a therapy or disease modifying drug early, and staying on it, has shown to slow the progression of disability.”

 

Longhaulpaul   “So, I inject this disease modifying snack daily and it slows the progression of the disease by keeping the roaches busy. That’s great, but what happens when I do get another attack or flare-up?”

 

Barlow   “If the roaches chew on the harness anyway, you will have to resort to the car wash again, but the real recovery time is not measured in hours, but in weeks.  This represents the acute treatment of an MS exacerbation with steroids, adrenocortotropic hormone (ACTH), and some off label use of IVIG and plasmapheresis.  These don’t fix the problem.  They simply try to calm the colony of roaches and stop further destruction.  Usually, people feel some improvement at four to six weeks after acute treatment of an attack.  There is often some amount of permanent destruction and decline.  Not always enough that we professionals can measure; but enough that the patient, their family, and often close friends will notice. The more frequent the attacks, the more likely decline or permanent disability will occur.”

 

Longhaulpaul   “So, do you think my ex-wife gave me this disease?”

 

Barlow   “Umm..Not likely.”

 

Barlow   “All motorcycles are on the road for only a limited amount of time.  Having Multiple Sclerosis adds a faster rate of wear and tear to the machine but we must remember it is still as much a motorcycle as all the others. It’s just a little more like, well hey, what was that undependable finicky, weird bike you rode around the country during the Ironbutt Rally called?”

 

Longhaulpaul   “Oh man, you are not going there, are you really going to compare ‘all of this’ (wide hand gesture around my head and upper torso) to a Russian URAL? (I get up) “Thanks for your time, Paul, but this interview is freakin over…”

 

(End of Interview)

 

Depression is a very common symptom of MS. Sometimes it can be externally provoked. 

Why can’t I be a BMW?