Tuesday, August 8, 2017

2017 Bike MS After Action Report (AAR)

More pictures to follow!
I share this report with you with the understanding that the only chance I have for a healthy future will come from new research and development. Please donate today to support our fight and share this message with as many others as you can.

As we rolled into 2017 Bike MS, much of my hopes and prayers rested upon the adrenaline boost I’ve come to cherish and depend on. My friend didn’t let me down! I’m grateful and proud to report my 15th annual NMSS event was a smashing success.
We arrived in Monmouth, Oregon facing 97° temperatures under a blazing clear sky. Team tent set up was quicker than normal, basically because I slacked on my team captain duties and did the bare bones minimum. My body held out for a few hours, thanks to that adrenaline and the opportunity to reacquaint with so many incredible friends. Fortunately, Eleanor was there to be my excuse for heading back to the room early and calling it a night. I knew Saturday was going to be a trying day; I still had no idea what my body would be capable of when the time to ride finally arrived…
My self-pity clouds started to amass early, as I realized how much longer everything took: 20 minutes to dress, 15 minutes to walk and reach our team tent area, 20 minutes to put my bike gloves on. Fortunately, I had help pumping my tires and ratcheting down my bike shoes (a humbling experience to have others care for your basic needs). I lumbered into my recumbent trike; suddenly I was transported back to the summer of 1999. After being grounded for 2 ½ years (the car accident which probably triggered my MS) I finally crawled back into the cockpit of the Apache helicopter. Like then, everything suddenly felt right and comfortable. A smile came over my face as I proudly boasted, “You got this!” Much like the day before, I just didn’t know how long my burst would last.
There were a variety of routes this year, ranging from 19 through 105 miles. I conceded the short route would be in my best interest, hoping to make at least that far. So, I headed out once again, alone with my thoughts and my music to keep me company. The route split off quickly, with a right turn for the 19-mile course and everything else to the left. It turned to the right and rode.
About a quarter-mile into the new course I cursed myself and turned the bike around. The only thought going through my head was, “If you finish 19 and make it back comfortably, you will be pissed at yourself for leaving it on the table.” I turned around and backtracked to the direction of everything else. The next split was easy. 32/45 one way, the remainder of everything else went the other. I knew my body wasn’t going past 45 miles. I still wasn’t sure my body would make 32… or 19… or less. I made the 32, and I’m proud to say I left absolutely nothing on the table!
It was an interesting little science experiment to watch my body struggle through 32 miles in the Willamette Valley. My left side bears the brunt of this disability. My hand wrapped around the steering post as it quickly cramped up. Breaking was not an option on the left side, shifting gears difficult and cumbersome. I relied on my right for all the steering, breaking, and shifting.
My left leg can’t push or pull the pedal. It’s basically just clipped in, with my ankle braced tight, its sole purpose seems to be adding difficulty and resistance to my right leg. My right carried the load and brought me back safe. I wasn’t worried about the strength of my right leg, it was the incessant pounding and cramping on the left which worried me. Nevertheless, the conditioning of my strong limbs and my stubborn motivation carried me across the finish line.
What a wonderful sight it was to see Eleanor jumping and yelling as she cheered me across, then running to me for a well-deserved victory hug! I was tired and sore, confident I pushed much harder than I should have. There was no other option.
Brie was ready to support. After 3 ½ hours of sitting in my trike and riding, my legs and arms were useless. She unclipped my feet from
the pedals, removed my shoes and ankle brace, and popped on my walking brace. It took Brie plus two other people to help me stand up and hold on while my wobbly legs tried to gain stability. I’ve given up a modesty in humbling situations such as this. There’s no way I can do it alone.
The rest and recovery time was longer than before. My body is suffering from not only the weakness of my failed limbs put the atrophy their immobility leads to. My adrenaline kicked in again and again, mustering up enough to celebrate with my team on Saturday night and to bike the next morning in the ‘I Ride with MS’ victory lap with all my friends fighting along my side. Overall, the weekend was less than I wanted to do yet more than I initially feared I would be able to accomplish.
Even more than crawling into the cockpit of my recumbent trike, the weekend held so much magic and promise. So many friends and loved ones of there to support and fight alongside me. Many are fighting their own MS battle; it’s wonderful to catch up with my brothers and sisters. We compared war stories of our setbacks since last year’s Bike MS; we marveled at the new technology and widgets we had to increase our mobility; we shared stories of new medications and new hopes. The most poignant part of our time was a chance to see how their fight with MS is going. I’m happy to say the progress for so many was positive. We love to share in their success, always happy to talk about how they were much worse in the past, restricted to a wheelchair, and now there gingerly walking around. We even sometimes reminisce about the good ‘ol days, how I rode the 100-mile century option just a few years ago, yet struggle today with my limited potential. We talk about the future (talk about the future a lot). Rarely do we talk about the future where our MS continue to overtake the mobility and functions we cherish. No, all I hear is talk about how we will overcome.
I awoke Monday morning with the grand plan of writing this quick AAR to share with my supporters and begin the next round of recruiting more donors. Although the alarm went off at 5:30, my day was not ready to start. I couldn’t get out of bed, unable to move my left side at all. A weekend of riding and exerting left me with an agonizingly sore, cramped leg. My left hand remained tightly cramped into a ball. My day would not start for a while; instead I laid in bed with a smile on my face.
“You did way too much. It’s going to take some time to recover. This weekend was more than your body could take. Good job, KB! Good job.”
It’s coming back… slowly.
Maybe next year all I will be able to do is half, for a quarter, or a tenth of what I did this year. If it is, I will do that plus a little bit more. I will leave anything on the table. This fight is too important.

The fight is not over and it won’t be over until a cure is found.
It will never stop…nor will we
It will never quit…nor will we
This is why we fight!

Never Stop… Never Quit…®
Kevin Byrne
Portland, OR

 Never Stop... Never Quit... Reg. U.S. Pat. & Tm. Off.

Thursday, August 3, 2017


2017’s Bike MS is just around the corner. On Friday, we gather down in Monmouth to begin the festivities: reacquainting with old friends & meeting new ones, riding the countryside on Saturday and Sunday, and celebrating our mutual commitment to defeat multiple sclerosis.

This year marks the 15th anniversary riding with the National MS Society. For the first time, I go into the weekend afraid. My body is failing at a rate I find difficult to track.

The Congressionally Directed Medical Research Programs (CDMRP) strive to transform healthcare for Military Service Members and the American public through innovative and impactful research. In support of MS, their vision is “to prevent, cure, reverse, or slow the progression, and lessen the personal and societal impact of multiple sclerosis.” I recently had the pleasure of reaching out to our members of Congress in support of continuing MS research under the CDMRP. This is a cause I wholly support, but what can I do when every aspect of their vision is currently beyond my reach?

Slow the progression
Lessen the personal impact
Lessen the societal impact

The simple answer is to fight with everything I have, to never stop, and to never quit. I have no other option.
There is no way to lessen or overcome my fear. My limbs won’t work well, or at all, nor can I will them to do so. Fatigue will set in the moment I wake. My eyes will fail, my voice will grow weak. When I strap into my trike, I have no idea how far my legs will push me, if they work at all. I look at the temperature forecast and wonder how much 100+ degree weather will compound my weakened condition. Above all, as I struggle to set aside these doubts and forge ahead, I wonder if this will be the last year my body will have the energy to even begin such an undertaking.

Fears will press hard on my emotions, every minute of every moment. Instead, I need to give myself a reason to fight.

[Inside Voice]:
“Don’t fight to overcome your fear, for your fear will not subside. Never.”
“Don’t fight to show your fear who is stronger. Fear is.”
“Don’t fight to lessen your fear, make it go away, or drown it out. Fear doesn’t care; fear is not fighting you; fear is merely present.”
“Just fight. Fear is there and it’s not going away. Focus on the fight and maybe, just maybe, you’ll win.”

I win my fight if I overcome that which feeds my fear, my MS.

Prevent, Cure, Reverse, Slow the progression are in the hands of science. I need to fight so I can continue to raise money and awareness in support of the research and development of new therapies to prevent, cure, and treat MS. This is why I ride!

Cure, Reverse, Slow the progression are also in my hands. I need to fight so my body has the strength, opportunities, and resources to attack the MS already inside me. My ongoing therapies need revamped support in the name of radical changes to diet and exercise. August 1 = Day 1. This is why I ride!

Lessen the personal and societal impact of multiple sclerosis. The emotional challenges of my MS cripple far worse than the physical. This is a manual focus, every single day. “Remember that, Kevin: this is a manual focus, every single day.” This is why I ride!

I don’t want my story to be left untold.
When we win this fight, I don’t want to say, “I wish I did more to end this sooner.”
If I lose my battle before we win this fight, I don’t want to say, “I wish I did more when I could.”
Instead, I want to say, “Remember when we… Wow, was I scared!”

I am left wondering how many others felt this way when they finally confronted the brutality of their own fight. How many who fell thought they would win? How many who won feared they might fall?
Please support my fight

The fight is not over and it won’t be over until a cure is found.
It will never stop…nor will we
It will never quit…nor will we
This is why we ride!

Never Stop… Never Quit…®
Kevin Byrne
Portland, OR