One of the lesser known symptoms of Multiple Sclerosis is itching. It can occur just about anywhere on the body. It is caused by damage to the nerves in the brain or spinal cord; specifically the nerves that transmit signals to the particular area of the body that is screaming to be scratched. The skin that is affected is not where the itch originates, so curing the itch isn’t possible.

MS itching is often mis-diagnosed, first thought to be an irritation from outside sources such as insect bites, laundry detergents or a reaction to something the patient was exposed to. Because the itch is really just in our heads, no amount of antihistamines, creams, aloe, anti-itch ointments or prayers will make a dent in the extreme urge to itch. We scratch and scratch and scratch, day in and day out, because it is the reaction our brains crave. Habitual scratching leaves nothing but broken and irritated skin that often gets infected and leaves scars. For about seven years I have had two areas on my body that constantly itch and unfortunately I am not able to reach into my brain to scratch away the real damaged area. The MS itch my friend, is a B*%ch!

Speaking of the Seven Year Itch……..

Seven years ago I started this million mile journey. Honestly, I thought I would be riding about 100K miles a year and would be done by year 10, but in reality, it looks like I have another 10 years to go. I am closing in on 400K MS miles and it is still a decent accomplishment, setting a few world records and raising over $150,000 for charity along the way.

I first thought disease progression, physical and cognitive changes over time would be my biggest challenge, but actually, finding ways to cover my travel expenses continue to be the greatest roadblock. My fundraisers such as the MS1000 and MS5000 support MS charities, and I have had some success over the last couple years selling T-shirts, bumper stickers and calendars I create, but the proceeds barely cover 50% of my yearly fuel costs. I no longer receive income or reimbursed travel expenses from sharing my story at various pharmaceutical events and many of the presentations and appearances I do now are for non-profits. I have been holding out hope for corporate fiscal sponsors, but it has been extremely difficult just to secure and hold onto the support I get today in the way of goods and services. I am appreciative of what I do receive and my journey would not be possible without my great sponsors, but traveling for a living without any measurable source of income is much harder and way less glamorous than it sounds.

This journey has been incredible, but also burns a hole in my pocket each year measuring tens of thousands of dollars.

After seven years, I am ready to scratch a new itch.

Many social media influencers seem to be able to support themselves, often through crowd sourcing or promoting products in addition to the content they are producing. I never really thought of myself or my story as being influential, nor did I begin this journey or continue to ride thinking I will ever make money. I never wanted to ask other riders to donate money so I could ride my motorcycle. I have been reluctant over the years to advertise on my website, promote products or use my own growing audiences to financially support my journey despite it being repeatedly presented to me how my journey is not only entertaining to follow, but provides information, education and inspiration to others.

It took seven years for me to finally realize; publicly sharing my journey provides a service to my followers, supporters and sponsors and has legitimate value.

By creating a Youtube channel and growing subscribers on Facebook and Instagram, I have discovered a way for others to become part of my adventure, sharing my journey and helping me reach my goal. Creating frequent content and maintaining the social media connection while on the road is important to me, but requires equipment and many hours recording, editing and uploading.  Less time on the bike each travel day means more nights in motels, more meals on the road and higher expenses in general. As my audience is growing, it is clear social media is a way to reach out and inspire more people living with MS and other chronic conditions as well as provide content to my followers who are interested in my motorcycle adventures.

To help pay some of the costs associated with traveling every day I am excited to official announce I have launched the Longhaulpaul Official Supporter Community on Patreon. If you feel like I have provided you or others with something of value and would like to see me continue to do so, please consider becoming one of my official supporters on Patreon today.

Patreon was created as sort of a TIP jar for creativity, a place where Youtube subscribers, Facebook followers or supporters can contribute or pledge a few dollars each month to show appreciation and help support the person creating the free content they enjoy. The idea of crowd-sourcing, where a few dollars multiplied by a few hundred people can create a substantial financial thank you. In my case, it will provide the boost I need to continue my journey raising awareness and funds for MS.

Becoming an official Longhaulpaul supporter on Patreon will get you a variety of swag like T-shirts, decals, signed posters or mugs depending on the level of support you choose. ($2- $20 a month) As my journey evolves, supporters will get sneak viewing of videos, live webcasts or maybe special behind the scenes access.

My passion to inspire others facing challenges in life propels me to continue riding and fighting every day. By joining my Patreon support community through pledging a few dollars a month, you are helping me raise awareness for people living with a chronic illness while becoming a special part of my story, sharing my adventures, riding with me, mile by mile on this incredible journey.

Sending me a little scratch here and there may not help my MS itch, but it certainly will help keep me Chasing The Cure!

PATREON /LONGHAULPAUL

The Future of Motorcycling

Having a progressive and often disabling diagnosis certainly makes me wonder about my own future. My financial future and retirement, the possibility of my physical and mental decline and how Multiple Sclerosis may affect my relationships with family and friends. As an avid motorcyclist now using my riding passion for a purpose, one of the questions I often get asked as I travel the country sharing my story is,

“What will you do if you can no longer ride your motorcycle?”

It is a legitimate question for a man who’s disease often presents itself with numbness, weakness and dizziness which create balance and mobility issues. Canes, walkers and wheelchairs are common devices people with MS often need to rely after years of disease progression.

My answer usually involves talking about the variety of options out there such as attaching a sidecar, trikes and new multi-wheel vehicles that do not require balance. There are a few companies that specialize in customizing vehicle controls for people who have disabilities but still want to enjoy the freedom, excitement and fun of motorcycle travel. Riding for me is medicinal, and whatever happens to my body in the future, I will do everything possible to continue taking my Motomedicine as prescribed. 

The New YAMAHA NIKEN has three wheels, but is nothing like a traditional trike because it leans and does NOT balance on its own. It delivers performance and incredible stability in the corners. It is also lots of FUN!

I used to wonder if there would be motorcycles in heaven or, wherever I might end up. Lately, I have to wonder if motorcycles will still be a form of transportation here in the United States a decade from now. I understand motorcycles are not for everyone, and without the proper training, gear and frequent practice, can certainly be a more dangerous way to travel than other means. I would argue though, for those who do learn to ride and ride often, the incredible experience and benefits are unlike anything else. 

Motorcycle sales are in the toilet, accessory companies are struggling to stay in business, and attendance numbers at national rallies such as in Daytona and Sturgis are way down. Millennials are not interested in bikes or even cars when compared to generations past, and no one is buying their grandchildren mini-bikes for holidays or birthdays. Heck, kids today don’t even ride bicycles around their neighborhoods anymore. The average age of a motorcyclist is increasing, and as they die off, no one is stepping in to fill their boots. The industry is scrambling to find ways to introduce new and younger riders to motorcycles and to reverse this abrupt decline in interest, but will they be able to save motorcycling in time? 

There are lots of reasons for this alarming decline. Riding a motorcycle is not inexpensive. Buying a bike, getting good training and proper gear, garaging, maintaining and finding time to ride make motorcycles an infrequent expensive hobby at best for most people own them.

Virtual reality is a cool toy, but when people believe sitting on a couch in 3D with a group of imaginary friends can compare in any way to getting out of the house and experiencing the world by interacting with real people and traveling on incredible adventures, we are indeed in trouble as a society. We work from home, play from home, learn from home and shop from home. Sadly, we have scared ourselves into never venturing out into the world without our survival kits containing sunscreen, sanitizer and a tracking device preprogrammed to dial 911. 

I believe one of the biggest reasons interest in riding motorcycles has declined sharply is the public’s perception that motorcycles are extremely dangerous and risky machines only ridden by hell-raisers or people with a death wish. Almost every message they see or hear regarding motorcycles revolves around danger, dismemberment and death. I am alarmed at the number of motorcycle owners themselves who now also share this fear. They themselves now believe taking a ride across the country or even on the interstate for a few hundred miles in one day is something scary or dangerous.  I’m saddened to hear so much negativity, especially from fellow riders, people in the industry, dealers, promoters, venders and even some manufacturers who think riding a motorcycle for daily transportation is too dangerous. The same industry professionals then question why there are no new riders entering the community. 

I often wonder if any of these people actually spend any time actually riding motorcycles.

We are living in a world where we disinfect everything we touch from door knobs to shopping carts and no longer shake hands for fear of getting the bird flu. We are immune from experiencing fun and excitement, especially if it involves any hint of risk. We are overly cautious and overly sanitizing our children, raising young quarantined adults who believe all life has to offer is available from Youtube.  Fake news!

Transportation has become so blandly safe, automobile drivers need not worry about paying attention. No need to judge the distance between the car ahead or if it’s safe to change lanes. We don’t even need to remember where we parked or if we put the baby in the back seat. No thinking required, our car will tell us what to do. Our quest to make a safer world over the last 30 years has created a distracted driving epidemic and now the new goal is to take all the responsibilities of driving away from the operator and hand them over to an autonomous vehicle. 

I sell coffee mugs that say, “Stop Distracted Drivers by Bringing Back Ashtrays and Stick Shifts.”

Seriously, it would work. Remember when driving a car was a fun activity representing freedom and exploration? Remember going out for a Sunday drive? Is joyride even still in the dictionary? 

For most people and municipalities, motorcycles do not fit into this disinfected safety-above all else world of transportation. I hear the usual concerns every time I speak to a non-rider audience or even strangers I meet at gas stations.

“Do you always wear a helmet?” “How many times have you been hit?” “Aren’t you scared to ride by yourself?” “Please be safe”, “We pray every time we see a biker”. “Ride safe.” “Be careful.” “I hope you make it home.”

Riders like myself who take motorcycling seriously are constantly defending our choice of daily transportation. We fight against the negative perceptions by listing the safety features of motorcycles, advantages of proper gear and rider training. The manufacturers, motorcycle rights groups and industry think-tanks are all doing the same, trying to say motorcycles are not unsafe. This defensive approach doesn’t seem to be working very well. 

With the dangers being hammered into the head of the general public from every angle, the positive benefits of riding motorcycles, which there are so many, are rarely publicized. 

What happened to promoting the fun, excitement, power, independence and the adventure made possible by two-wheeled travel? 

Maybe it is finally time we stop being so defensive about motorcycles and just simply present the world with a few positive benefits of riding motorcycles. Let’s start by sharing the #1 reason we love to ride motorcycles; because they are incredibly FUN. 

Here is my latest brilliant plan to protect the future of motorcycles.

We have all seen the LOOK TWICE SAVE A LIFE  bumper stickers which have been alerting drivers to be aware of motorcycles for many years. The message was strong and simple, if you don’t pay attention, you could KILL someone riding their motorcycle. 

I have improved this slogan by saying the same thing without having motorcycles and loss of life (AKA death) in the same message.

This new slogan reminds drivers to be aware AND promotes motorcycle FUN at the same time. 

Did I mention this was a brilliant idea that might just save the entire motorcycle industry?

Bumper stickers, helmet stickers and T-shirts are exclusively available HERE

Who knows, maybe working together, we can take motorcycles off the endangered species list!