What is the MS 365 Project?

The MS 365 Project is a celebration of my 20th year with Multiple Sclerosis and the active lifestyle that I have used in my fight against MS. This year long project will hopefully raise money for the Can Do MS organization and raise awareness of how strenuous activity can help in the fight against MS.

Friday, December 31, 2010

On your marks. Get set...but first an Introduction

Everything has to start somewhere and I have chosen to start this project on that most cliche of new beginnings: New Year's Day.  The MS365 Project is a pretty simple idea - ride 1 mile outdoors everyday for one year, ride a total of 3,650 miles outdoors in that year, and raise a minimum of $5000 to benefit Can Do MS (formerly the Huega Center for MS founded by Jimmie Huega) to celebrate my 20th year of living with Multiple Sclerosis.  But like a lot of simple things, there is a lot of complexity behind the scenes of this project.

I was first suspected of having MS in 1991.  One morning, I woke up blind in my left eye.  No vision.  Nothing.  I went to the eye doctor who confirmed that I couldn't see anything out of my left eye and he suspected an optic nerve infection called Optic Neuritis.  This is a classic indicator of MS.  I was referred to a neurologist who decided to do an MRI on me to make sure I didn't have a brain tumor or some other causal factor for sudden blindness.  During the MRI, white lesions (another MS indicator) were found on my brain, but the presence of a baseball sized sub-arachnoid cyst in the lower left posterior fossa of my skull and wrapped around my brain stem stole the MS's thunder and got everybody in a tizzy.

Thus began a round of seeing neurosurgeons and my first experiences with people who play with human brains for a living.  The first neurosurgeon I met with was NOT a people person, telling me that if he told me I was fine I was going to just have to believe him.  My response, "You aren't the person with the big thing in your head."  And so I sought out a second opinion.  It was while walking to an appointment at Duke University Medical Center and reading my medical records (always read your medical records, they are YOUR medical records) that I first saw Multiple Sclerosis written down.  Up to this point no one had mentioned MS, let alone the possibility of me having it.  I had surgery to install a drain in the cyst, followed up with my neurologist and was told that we would deal with MS later "if anything happens".

I started riding and racing bikes in 1985 when I was 15 years old.  When I went to college in 1988, I fell out of cycling, preferring a less healthy lifestyle.  My health issues in 1991 forced me to drop out of college.  After a full recovery from brain surgery and with no MS symptoms, I started riding my bike again and getting back in shape.  I decided to go back to school and so I moved back home with my parents to get reestablished in college.  I started working in my local bike shop, repairing and selling bikes.  I trained hard, I raced and I fell back in love with cycling.  My life began to revolve around bikes as it was job, hobby, sport and passion all rolled into one all consuming chunk of my life.  I fit classes in to this schedule and had a full and happy life that seemed boundless.

And then in the fall of 1994, my life changed dramatically.  I came home to my parents house after a hard training ride, ate a big dinner and went to bed after doing some homework.  In the middle of the night, I woke up feeling exceptionally nauseous, but found that I couldn't really move.  I felt incredibly weak.  I tried calling out, but my voice was barely audible.  I found that I could pick up my left arm with my right arm and throw it against the wall.  After a few minutes of this, my mom woke up and came in to see what was going on.

She sat me up and immediately the world became unmoored.  Up, down, left and right swapped places with speed and randomness.  I immediately started throwing up and didn't stop.  I couldn't walk.  My parents half dragged, half carried me into the bathroom as I continued to throw up.  They decided to drive me to the hospital.  I remember my dad telling me that he couldn't carry me down the steps and that I had to walk.  I remember telling him I couldn't in a voice barely above a whisper.  I still don't know if he heard me.

The car ride was a blur with me trying to keep my head from moving with my right hand pushing my forehead against the seat and the lights flashing like crazy as my eyes were unable to make sense of the world around me.  I was scared.  This was my first major exacerbation.  I went from the fittest I had ever been as an athlete to a semi-paralyzed wreck with no equilibrium who couldn't stop vomiting in just under 5 hours.  After a few days of debate among the doctors at the hospital and a lot of lobbying, insisting and arguing from my mom, the plan to do brain surgery on me went away and the possibility that I had MS became the primary focus.  An MRI scan and a spinal tap and BOOM, "you have MS".

I got lucky with my first neurologist, Dr. Serrano.  He was funny, eccentric and treated me like a person, not a patient or a case.  I'll never forget that first neuro exam in the hospital room with him moving a finger around and me touching my index finger to my nose and then to his finger.  Right arm - no problem.  Left arm - I wasn't even sure who was controlling it.  He did the usual "Good. Good" and then looked me in the eye and said, "You realize you really suck at this, right?"  Yep, it was pretty obvious that something was wrong with me.  But then he said, "You ready to get better?"  I don't know why that seemed like such a momentous thing to say, but it immediately filled me with the certain knowledge that I was going to be fine.

Dr. Serrano started me on steroids and my leaving the hospital began to become possible.  I remember my dad taking me out for walks around the hospital.  I would push a wheelchair for support and he would walk behind me, grabbing the back of my hospital gown and pulling me upright when I would tilt to far to the side to remain vertical.  This effort I knew, this was like training.  I asked Dr. Serrano if I would be able to race my bike again (notice I didn't ask about riding, that was a given in my mind).

He said, "Were you racing your bike last week?"

"Yes." I replied.

"Then there's no reason you can't do it again.  Your body will let you know if you do too much.", he said.

That was it.  That was the moment that set my life with MS in motion.  It is still the mantra that I live my life by.  I am not in denial about my MS, I am in refusal.  I refuse to offer a single moment of compromise to MS.  If MS wants to affect me, it has to bully its way in because I am not opening any doors in my life to accomodate it.

I left the hospital and went home to continue steroid treatment.  Shortly after getting home, I asked my mom to help me go for a bike ride.  I have no idea what she was thinking, but she helped me get dressed, get outside and then held the bike upright as I managed to get on and get my feet clipped in to the pedals.  A little push from her and off I went down the road.  I had told her I just wanted to ride once around the block.  What must have been going through her mind as I disappeared from sight, her barely able to walk, not quite right equilibrium having son pedaling a bicycle down the road?  I reappeared and said, "one more" and disappeared again.  I came back to the house, she helped me off the bike, into the house and into bed, where I passed out from exhaustion.

I don't remember that first bike ride, but I do remember feeling better and better each ride after I left the hospital.  How I got into better and better shape as time went on.  I continue to ride and race my bike.  I commute to work daily.  I race road, cyclocross and mountain bikes.  I love to go on multi-day self-supported bike tours with my family.  In short, my life is defined far more by two wheels than it is by MS.  In fact, this is going to be a bit of a coming out to most people who know me, since few people know or would ever suspect that I have Multiple Sclerosis.  Cycling is my weapon against MS.  I am firmly convinced that forcing my body to do the hard physical activity of cycling, the mindset of pushing physical boundaries that comes with any competitive sport has kept MS from wreaking havoc on my body.  As Dr. Serrano once told me, "It's hard for a nerve to forget what it does when you use it all the time."

So with the knowledge of my Multiple Sclerosis story, let me get back to the MS 365 Project.

What do I hope to accomplish?  I hope to bring awareness of MS to those who may not know that their lives are touched by it.  I hope to connect with other people with MS who are living a life like mine.  And I hope to help others with MS find a path to greater wellness through an activity that they love.  I want to raise money for Can Do MS because they believe in the power of an active life to beat MS.

What can you do? You can do a lot, actually.

     #1 Ride with me.  Ride 1 mile outdoors every day in 2011.  Ride 3,650 miles in 2011.  Share your experiences, stories, and adventures on this blog or on the MS 365 Project Facebook page.

     #2 Pledge.  Pledge your support for Can Do MS through this project.  You can pledge to donate a certain amount for each day I ride or for each mile I ride.  You can start your own pledge drive/ride and get people to donate based on what you do.  Or you can do a one time donation to Can Do MS.  I will have an online pledge form in the coming days, as well as a direct donation link to Can Do MS.  Please make sure that you include that your donation is a part of the MS 365 Project.  Pledges are on the honor system.  Unless you live close by me, I probably won't be showing up at your door to enforce collection.  When the time is right for you to honor your pledge, just go to the Can Do MS direct donation link and make your donation.

     #3 Share.  Share your stories.  Share your adventures.  Share your triumphs.  Spread the word about this project and help me show how staying active can make a tremendous difference in the lives of people with MS.  I will be sharing stories with you about my adventures over the coming year.  I will post my mileages, ride and race reports and any other things that I think may be relevant to this project over the coming year.

Thanks for reading.  I look forward to everything that this coming year will bring and this adventure that I'm starting on.  I hope you'll join the ride!


  1. Shawn-
    Nice Blog! You know, most of the time I forget that you have MS because of the way that you live your life. Keep at it! You will definitely inspire a lot of people with MS and without. Happy Holidays to you guys. Take care


  2. Wow. Well done, Shawn. I can't remember if I knew you had MS. Not that it would have mattered. You've always been a bike-geek to me. Looking forward to following your blog this year.

  3. Shawn, I'm IN! A mile a day for the rest of the year. I have my route mapped out and I can walk right outside my door to get it done. Thanks for the inspiration.

  4. Wow! You have inspired me! It's been my goal to ride my bike outside again since I was diagnosed three years ago. I ride a stationary bike almost every day, but I've been afraid of the heat and my balance so I've not ventured outside to ride. Now I'm going to do it!