Longhaulpaul's Chasing the Cure

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