Tuesday, August 30, 2016

Bike MS 2016 - One Way or Another

“Kevin, why do you fight? What’s the benefit you expect to gain from all of this?”

I don’t think I have ever had someone directly asked me that question. In the 14 years of riding and fundraising for the National Multiple Sclerosis Society, my intentions have never come into question. To some people, it must seem obvious: I fight to find a cure for my disease. To others, my efforts seem to be more altruistic and charitable: I fight to help find a cure someday, a cure for others. Many are proud of my determination and will to fight, even as my strength declines and my body weakens. Although they see my outcome as inevitable, the examples I work to set for others fighting disabilities far exceed any medical benefit my work will provide.

Where does the truth lie? It’s nowhere in the middle, not some water-downed answer that kind of meets all possibilities. My answer is simple and extreme in every direction: I Fight to Win.

I fight for a cure for me. There is nothing that I want more than to defeat my MS, a disease which has already taken so much from me yet continues to chip away at my body, my mind, and my soul. I want to take back everything I have lost. I want to never go to bed at night in fear, reflecting upon what I lost that day and wondering what piece of me will fade away tomorrow. I want to stumble upon the magic cure, my own Deuce Ex Machina, and take away 17 years of pain and loss in the blink of an eye.

That’s probably not going to happen. If it does, it probably won’t be that instant solution I’m fighting for. That’s no reason to give up, to stop fighting. Telling me I’m going to lose only makes the fight harder. When I hear “probably not" all I hear is “possibly could". As long as we possibly could, I will continue to fight.

I fight to overcome my disability. Every day, my MS worsens. Every day I stand up against that beast and fight to take back some ground. I woke up yesterday morning bright and early at 4:50, ready for another day of fighting. After dressing and brushing my teeth, I grabbed my bag to head out to the gym, as I like to be ready when the doors open. As I climbed into my car and lifted my left leg inside before closing the door, I smiled. That was the first time in three weeks I was able to pull my leg into the car unassisted. Most days, I have to grab my unresponsive limb with both hands, then lift and pull it into the cramped space. Not today. Monday morning, just after 5 o’clock, I logged my first victory of the day. Fuck you, MS. I don’t want to give you any more of my life. I want to overcome the pain you have already caused.

That victory is probably not going to happen often, at least not as often as I want. My MS is going to continue to take; my disabilities are going to continue to worsen. Constant rehabilitation efforts will help slow its progression (hopefully). Adaptive technologies will help me continue to function, by offsetting and compensating for my disabilities. I’ll use those technologies. I’ll continue to work to slow its progression. But please be rest assured, MS. I’m not satisfied just trying to compensate for my losses. I’m always fighting to take back every inch of ground you’ve stolen from me.

I fight to end this disease. The accomplishments made in the past few years far exceed anything ever realized. The NMSS details the 14 drugs currently approved for modifying the disease course of relapsing remitting multiple sclerosis, as well as three main treatments for managing relapses. There are scores of medications and medical devices developed to aid in the managing current symptoms a patient may experience, in addition to a litany of complementary & alternative medicines. That is incredible but it’s simply not enough. It’s not enough for two reasons:
  • First, there is no cure. FDA approved treatments, medications, and medical devices focus on trying to modify, slow, or manage the progression of MS. I want to find a cure; I want to end the disease.
  • Second, treatments that work for one patient won’t work for another. Treatments for Relapsing-Remitting MS (RRMS) are simply ineffective when facing Secondary-Progressive MS (SPMS), Primary-Progressive MS (PPMS), or Progressive-Relapsing MS (PRMS). The four classifications are neither distinct nor consistent in their characteristics, varying from patient to patient and day to day. Even within classifications, treatments which may work for one patient can have minimal, zero, or even harmful effects on another. I myself have experienced five separate life-threatening reactions to “approved" medications. These treatments are crucial in the treatment of MS. They have saved countless lives in restored function to even more, but they’re not the final answer. I want to find the treatments that will overcome the devastating effects of multiple sclerosis.

Even as they say this (speaking through voice recognition software to bypass the increasing disabilities in my fingers) there is no inference of doing this for me. This is for everyone fighting this disease today and every person tomorrow will have to hear those god-damn words “You Have MS".

I fight to maintain the will to fight. One of the scariest parts about my MS is that there are so many people fighting alongside me, be it my peers or my army of caretakers, yet I am so alone in this fight. It’s impossible to predict or even explain what my MS is taking from me any given moment. Most times I can’t even form those descriptions in my own mind. I can’t count how many times every day I sit quietly, sigh softly, and wonder “Just how long can you keep doing this? Just how bad will this get?" Those are the times I think of all my role models standing before me and telling me to fight. So I fight. I fight to remind myself that’s the only way I am going to experience joy, excitement, and elation. I fight to demonstrate the will to fight, for my peers and army of caretakers have the same doubts I hold close. I fight because I realize that’s the only way I will win. There is no thought of doing this in spite of my pain or to overcome my loss. Part of my fight is just to rattle my saber enough and keep me in that fight.

There are many reasons why I fight. My MS has taken a lot from me but my fight goes on because, one way or another, I will win.

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…®
* Inspiration: Blondie, “One Way or Another”, Chrysalis (US), 1978

For the full selection of Ellie's 2016 BikeMS mix, go to: https://open.spotify.com/user/22cq6yaewkxyysepfxm5pb7hy/playlist/0JxHvtzx2weHhcqVLagbOc

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

Monday, August 15, 2016

Bike MS 2016

Many of you have already received a similar version of this.  Over the next few weeks, many more will.  In case my outreach doesn’t extend as far as I wish, I’m sharing my message here.

On August 6-7 I rode.  For the 14th consecutive year, my resolve and commitment in this fight against multiple sclerosis peaked in a glorious Bike MS weekend.  My takeaways were plentiful.  Most important, however, was the single driving message I learned so long ago: Never Stop… Never Quit…

Please review this event report, covering some of my most precious highlights.  Afterward, please consider a strong donation of support for my 2016 fundraising efforts: main.nationalmssociety.org/goto/EMBK.

After final preparations on Friday, I trekked down to Monmouth, OR to greet the arriving members of Team Amulet. 25 riders joined Brie, Eleanor, and me this year on our team.  Though a bit smaller than some past years, the mix still blended every aspect of our lives: friends, family, neighbors, co-workers (both old and new), as well as new found connections. After site set-up and some short Friday celebrations, I settled for the night in preparation of a long day Saturday.

I Rode
Definitely the most important claim to stake was the fact that I pushed, dragged, and cursed my failing body out on Saturday morning to tackle the course.  I had more than my fair share of support getting me out, from my fellow rider helping me wrap a bike glove over my cramped and knotted left hand, to Brie strapping my bike shoes, to the group of fellow riders helping me ease my body down into my recumbent trike.  It’s humbling to need such support for basic tasks, but he fact that I never even have to ask is a most amazing thing.  My friends know my limitations, even better than I do or will admit, and they are there waiting to help…

I lifted my leg to lock my shoe into its clip, effectively strapping down a limb that provides little pedal power these days.  I finally felt ‘at home’.  There are few places my body feels completely at ease these days, but this is one.  The only close comparison I can share is that elation I felt every time I climbed into a helicopter seat (way back when).  Just being there make everything better; pain, cramping, numbness, and tingling symptoms, normally ever-present, seem to drift away when I ease into my trike.  I know they’ll return, but just not now.  Maybe that’s one reason I enjoy these moments even more!

All my body was able do this day was the short, flat route of 18 miles.  I rode with fellow-Amulets Brie, Sue, and Tommi on the course.  Like an energetic little puppy, I’d often burst ahead a bit, then slow down to circle back and rejoin my team.  On occasion I would have grand thoughts of extending my course or tackling some hills of the longer routes. That wasn’t going to happen this year.  A few seasons ago, I rode the 100-mile ‘century route’ and tackled the 4,500’+ of elevation.  The satisfaction of 18 miles and 150’+ of elevation would have to suffice this year.  Strangely enough…it was still truly exhilarating!

Highlight #1
The greatest part of Saturday was near the end. After an incredible ride, relaxation, and celebration with our 600+ Bike MS family, we were treated to an outdoor movie showing in the early evening.  To kick off the night’s theatre, all the children in attendance gathered up front, where I read them the story of My MS and E

As I read our story, Eleanor flipped through the pages for the huddled group.  The story is kind of like memorization of West Point Plebe Knowledge by now, as I can easily recite the tale backwards and forwards on command!  That gave me the chance instead to stare into all the young faces present and relish in their wonderment.  All I could thing was “Here I am reading a story to this adorable group of children, my words echoing across the campground to the whole group in attendance.  I’m telling a story that’s a tale of my own personal fears and struggles; a story that I’ve now published for all the world to read!”  That’s a world away from anything I’ve ever experienced before.  Nothing compares to that moment.  I never expected to ever feel this level of emotion reading a simple children’s story.

Highlight #2
Sunday morning threatened to take the wind out of my sails as a building pain in my knees added to my standard array of ailments.  I wasn’t looking forward to the ‘Victory Ride’ either.  The day’s events started out with a 1-mile loop around the camp perimeter road, completed by 57 riders this year who battle MS.  The I Ride With MS stage is a thank you to all supporters, as well as a motivation to us fighting. 

Writing is easy for me, as I can hide behind my keyboard and share my emotions, thoughts, feelings, and fears. This short ride puts me out in front of everyone.  I fear the display and often considered passing on the moment.  I’m so glad I did not!

I rode with Bonnie Iglesias and Michael Braem for the loop.  If you ever need to find inspiration and motivation, look no further than Bonnie and Michael.  When I met them, some 9 years ago, neither could ride.  Walking was a chore barely experienced, yet they continue to fight.  They never let obstacles hinder the effort to gain and do more.  As we rode, I watched them.  I reminded myself over and over: if Bonnie and Michael can make such an effort to do this, I owe it to them, my family, my supporters, and me to try…to work just as hard.

Every once in a while, I need my own series of reminders as to why I fight and why I need to push further.  Bike MS reminds me that the fight is not over and it won’t be over until a cure is found.

I will do my best to put my fight into words, and share the need, value, losses, and victories of life with MS.  Your support and donations will help us find that cure.  Please support my fight.  main.nationalmssociety.org/goto/EMBK

Thank You!


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…write…fight!

Never Stop… Never Quit…®

Kevin Byrne
Portland, OR

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

Wednesday, August 3, 2016

Bike MS 2016 - Holding out for a Hero

please support my fight with a donation and share my message past my reach!

I normally spend a lot of time reaching out to my army of donors and supporters. I must apologize for this year.  Typing, of all things, has become difficult.  My consolidated words end up in a forum from which they can reach the furthest.  This is why I write!

As part of my fight against multiple sclerosis, I’m riding for the 14th year with the National Multiple Sclerosis Society. This year’s ride is August 6-7 in Monmouth, OR (Bike MS: Willamette Valley 2016).

This past year has been especially challenging. For that reason, my ever-looming message is more valuable today. It’s time to ride. It’s time to move. I know what I need to do. I’m asking for your help again to make that a reality.

My body is failing
That’s no secret to people who see me every day, but the damage is indeed mounting.
Five years ago I climbed Mount Rainier. A few weeks later my body broke down once again. I struggled, but I mostly recovered.
Four years ago I rode the STP (Seattle to Portland) ride on my recumbent trike. Soon after my body failed worse; my healing was slower; my recovery less complete.
Three years ago, we left our beloved neighborhood to a one-level house in a flat part of town. The realization that stairs were not part of my daily routine became all too apparent.
Two years ago, I climbed Angel’s Rest for what I fear will be my final time, my body a shell of its prior self.
Today, with much difficulty, I can barely climb a flight of stairs. My body continues to break down, damage cuts deeper, my recoveries lessen. Will I stabilize? Will my condition worsen? How bad will it get? I don’t know.

There are no treatments currently available that can successfully fight the progression of my MS. My only salvation will come from the development of a new treatment, a treatment that will only come through funding meaningful research.

This is what I’ll do. I will aide in the development of the treatment that will save my life and, forever more, save future generations from hearing that fateful phrase, “You have MS.” Last summer’s words from Eleanor define this fight: “we raise money to Break That Spell on Daddy!”

My fight will have no expiration. I am not going to get better, maybe never but definitely not anytime soon. My MS, in fact, is going to get worse. The damage to my body will increase to the point I am restricted to a wheelchair soon or further limited in other varied factors. None of that matters. There is still a need for me to fight. More important, there are still people out there who need my motivation, my leadership, and my support as they wage their own fight. While I still have the resources and capability, I surely have the motivation to go on.

I need to raise money to fund essential research, testing, and development. 
I will be the voice needed to rally support.
I need your help and donation to spark my salvation.

Unlike the rest of my body, my words are stronger than ever. I will use them to paint the world a picture of:
  • What MS does to a body, once healthy and strong, as it unleashes its relentless assault.
  • What a body and mind experiences, as I continue to fight back.
  • The loss, and the love, family and friends experience as they watch me stumble. The joy they experience in my small victories!
  • The elation we all experience when I fight and win, whatever that win looks like down the road.

I will continue to paint that picture with my words, as I fight harder and harder. Your support donation is what I ask for in return.


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…write…fight!

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

* Inspiration: Frou Frou – Holding Out For A Hero, DreamWorks Records, 2004

For the full selection of Ellie's 2016 BikeMS mix, go to: https://open.spotify.com/user/22cq6yaewkxyysepfxm5pb7hy/playlist/0JxHvtzx2weHhcqVLagbOc
 Never Stop... Never Quit... Reg. U.S. Pat. & Tm. Off.