Longhaulpaul's Chasing the Cure

Ben Franklin will always be my favorite president.

April Fool

The jokes are not as funny as they used to be. Or maybe the definition of funny has changed. Or maybe I was so addicted to funny when I was younger,  I’m on the wagon.

The Fool this April has become myself. I had posted everywhere about my attempt to break another world record by riding 50,000 miles in 50 days starting April 1st, 2013. Well, ha, ha,  that isn’t going to happen. I may be stupid, but I am no idiot. In order for an attempt of this magnitude I needed a few things in place. I needed a bike sponsor and two bikes, I needed a Pharmaceutical sponsor, gas sponsor, and I needed to have enough time off from my current job. Despite the hundreds of hours spent pleading, I was unsuccessful in getting enough support to pull it off.

It also didn’t help to be plagued by two health issues over the last four months.

It’s All In My Head

Yes, most of my problems are in my head. That’s where my brain is being attacked by my own immune system and my grey matter is shrinking. You know when you get a headache and it lasts all day? Well this story is nothing like that. This fall, I suffered a bad headache. It lasted every single day for 100 straight days. Every day I was in brain pain by early morning and it lasted until I either left work early or took enough Ibuprofen to tint my fingers red like I eaten a pound of dyed pistachios. A look at my MRI showed a narrowing in my cervical vertebrae, but we all questioned if it could cause the headaches.

 

 

 

A Christmas epidural of steroids to the area helped some arm issues, but as suspected did not relieve the headaches. Could it be MS? MS has been known to cause headaches, but we were unable to see any defined activity in the MRI.  We decided to err on the side of caution and I was prescribed Acthar Gel, an alternative to steroid treatment.   A few weeks later, I started to see improvement, and on the one hundred and first day, I realized the headaches had finally subsided.

 

A Sidekick

Just days after my head was released from the vice and sledgehammer, I found myself doubled over; unfortunately not in laughter.

Sometimes life presents you with a brick wall but  you miraculously get through it.   We amazingly push through pain and suffering and learn to live again.  Yet there are times a tiny pebble can bring you to your knees and you completely surrender. I attempted to cash in my living will a few weeks ago but apparently didn’t have enough equity. I was in labor for four long days. Morphine, Vicodin, Percocet and something I got off Craigslist barely dulled the razored edge of agony.

A procedure that was scheduled involving one large crazy straw, two VHS camcorders and a plane landing laser beam was  averted only by luck and followed by the sheer joy only a mother can express;  giving birth to my first kidney stone I have since named “The Kneeler.”

 

 

 

I was quit embarrassed to turn in such a little stone to the Urologist for analysis. Judging by the severity of the pain, I had already arranged to borrow my neighbors truck and had also picked out a beautiful gold setting for it on Jared’s website.

Sometimes it really is the little things in life that need to be noticed, respected and then brutally pulverized!

(Does that make me a bad mother?)

 

Snowbird

I rode down to Jacksonville, Florida to attend the yearly gathering of hard-core long distance riders at the Iron Butt Association Pizza Party. I left Thursday Morning and was back home by very early Sunday Morning. 2500 miles in less than three days. And there was no pizza, but a scrumptious spread and a few hundred respected riders from all over the country.

 

 

 

It was on the ride to Jacksonville I finally conceded I was not going to make the April 1st start date  for my world record attempt. I was holding out for any sign of hope, but I realized as I rode  that I was clearly lacking a few of the major necessities to ride 50,000 miles in 50 days.

1) I couldn’t get a bike sponsor. I need two bikes set up with custom accessories in order to attempt the ride. Dozens of letters went out, most companies either thought the idea was too dangerous, would put too many miles on one of their bikes, or just didn’t respond at all.

2) I didn’t have a pharmaceutical company that wanted me as an advocate speaker. Everyone thought what I was attempting to accomplish was great, but I struck out with becoming an ambassador.

3) I had planned on using my two years worth of saved vacation time saved plus a couple of weeks of “unpaid leave” to set the record. Unfortunately, I was informed in late March that company policy forbids any unpaid leave, no exceptions, and I would not have a job after breaking the world record. So not only could I not afford the cost of footing the bill for the attempt without a sponsor, I would lose my job and who knows what else if I succeeded.

4) I didn’t even have one bike I felt secure with attempting to do such an attempt on. Sure the Moto Guzzi was running ok, but it was not the bike I needed do serious mile munching on. I needed a bike that would have dealer service and parts available in all parts of the country. I needed a bulletproof bike, and I had pleaded with just about every manufacturer to help me out.

5) I found two chocolate eggs in my sneakers, after I had worked out at the gym, sweeeeet!

 

25,000 miles since starting this journey and it occurred to me I had hit my first roadblock. My breaking a world record starting April 1st was not going to happen. I will still attempt it, and maybe the attempt will be later this year, but it just isn’t possible without more support.

Privateer

Arriving home from Florida, I decided I could not wait for a motorcycle manufacturer to sponsor the Endless Road Tour any longer and traded in my Guzzi for a more suitable motorcycle. If I was not going to get factory support, I would just buy a bike on my own that wouldn’t need factory support. I was torn between two models of Yamaha, the FJR and the new Super Tenere. Two quite different bikes, but both have been proven to withstand extreme riding. Both have broken world records and both were known as bulletproof. I have been thinking about the Super Tenere since riding it this summer in Pennsylvania.

 

 

 

This baby may be worn out before I even pay it off!

I chose the Super Tenere because of the Swiss Army Knife-like abilities of the 1200 twin, the upright seating position and the commanding view of the road form its 33″ seat. I do like to dabble in off road riding and this bike’s style is called “adventure touring.” If the Endless Road Tour was not an “adventure”, I have no clue what is!

I bought the bike at Motorcycles of Manchester and was given a pretty good deal.

I picked up the bike and noticed it had exactly Zero miles on the odometer.

“Zero Miles?”

“Yes the roads are too bad to take bikes for test rides after we set them up.”

“Cool, Thanks, Is this the start button? See you later!”

 

 

Of the 36 bikes I have had in the past twenty years, 1994 was the last time I actually bought a brand new one. It had also been more than ten years since riding a Japanese bike. I have been riding European bikes, BMW’s, Ducati’s, Aprilia’s, Moto Guzzi’s, and I love the character and uniqueness of them, but for this adventure, I needed a bike that would take everything I am going to throw at it and still love me in the morning.

I realized I had made the right decision before I even made it back to my house. The Yamaha Super Tenere is the perfect bike for me and my million mile mission.

I rode just 200 miles before removing the seat and mailing it out to my buddy Rocky at Bill Mayer Saddles, where he will use my pictures and anatomical measurements to build me a custom saddle.  I cobbled together a temporary plywood and foam replacement and tied it to the frame with an old sock. I put another 600 miles on the bike this week. I’m sure anxious to get my new seat!

 

 

 If You Buy It They Will Come…

Just days after getting the new bike, I was receiving great news across all fronts on what seems like an hour by hour basis! Talk about the eleventh hour!

This news is so new, I am unable to reveal all the details in this post but the past week went something like this;

1) A motorcycle dealership offered to help with supplying a second bike and all the service when I attempt the world record. AWESOME!!!!!

2) A Pharmaceutical company has asked me to be an ambassador and share my story and my journey by speaking to patients across the country. YES!!!!!

3) A major motorcycle accessory company has offered to sponsor my journey and provide me with just about everything  I may need for the new bike. UNBELIEVABLE!!!!!

4) A much anticipated oral drug (BG-12) was approved by the FDA as a first line treatment for MS this past Thursday, and I will be one of the first patients switching over from the daily injection therapy I have been taking now for 8 years. No more daily needles for me! Much easier to travel without temperature sensitive and scary hypodermic needles!  AWESOME!!!!!

5) I found two chocolate eggs in my gym shoes this morning, after working out.  PRICELESS!

 

Although disappointed I will not be getting on my bike tomorrow morning and riding 50,000 miles in a row, I feel like I have just set a world record. With support falling in line, there is no doubt my Endless Road Tour will be in full swing in a few months, I will be riding, writing and reaching out to others as a career, and now the record attempt looks possible for this fall.

 

The Inaugural MS5000

In the meantime, the MS5000 motorcycle challenge is in full swing,  30 riders have signed up so far to ride 5000 miles over the next 50 days and have been busy raising  money for the National MS Society.

 

We are at 25% of our goal as I write this post, and I am asking all of my readers who are not registered to ride, do not ride, or cannot ride, to donate a few dollars towards the event or one of the participants.  Riders start their mileage clock tomorrow and we still have a few riders struggling to get support, please let them know you appreciate their efforts to rid the world of Multiple Sclerosis.

The fundraising page is here.

Thank you for your continued support!

Any day you can ride is a good day!

Longhaulpaul

If you are going to Lake George for the Americade Rally in June, I will be doing two  presentations.