Thursday, August 27, 2015

Bike MS 2015 - Extraordinary Efforts

Life always seemed easy.  I never felt as if my lofty goals and dreams were unusually difficult to achieve.
I’ll pause here for all challenges and questions.  My life, education, careers, and family are all indeed wonderful realizations of those goals and dreams.  I just don’t consider them overly difficult.

Success wasn’t necessarily a given result, of course.  Hard work and a dedicated focus remained crucial in order to realize those goals and dreams.  All my efforts just never seemed difficult; it certainly never seemed beyond my reach.

Life was easy for one simple reason.  My definition of “difficult” was skewed.  The work and focus applied were not extraordinary efforts.  Instead, they were realistic expectations put in place to succeed with these lofty goals.  “Difficult” to me meant something that was beyond an expectation of success.  Throughout my life I was guided and supported by incredible family members, mentors, teachers, and peers.  They led me down a path where they could see my ultimate success, even if my own understanding was not yet developed enough to realize this on my own.  That’s not difficulty, but rather the reality I was shaped with.

My greatest achievement was merely trusting and following the paths so many others marked for me, helped me see, and celebrated with me when I reached each goal.  My greatest failures would be the times I ignored those lessons, instead feeling that some dreams were difficult.  Those were times I dropped a goal, discounting the perceived value it once held only to move on to a new dream.  It wasn’t coincidence my options always included strong paths ahead; it was always the support of all of my loved ones.

Over the past few months I have seen a glimpse into true difficulty.  Difficulty that is indeed beyond an expectation of success.  Last week I met it face to face when Brie and I met with one of my neurologists to talk about my next steps in treatment.  The past few years were marked by a steady and noticeable decline in my strength, function, and a host of usual-MS symptoms.  We’ve seen it going on for some time.  Now that my 2-year clinical trial is drawing to a close we wanted to know what to expect.  We wanted to know how to fight back with success.

There is nothing on the horizon that could be considered an expected course for Secondary Progressive MS.  I’m left with general tracks; three paths that the statistical majority of patients follow.
  • My disease progression will continue to get worse, or
  • My disease progression will stop worsening at some point, or
  • My disease progression will additionally revert to the sporadic relapses experienced in the past.

The other options include all of the above, at times, or none of the above.  There are no viable approved treatments.  There other experimental trials out there, though none are enrolling at this time.  Any new trial adds the risk that, even if the experimental drug shows positive results, there is only a 50/50 chance I would receive it.  I understand the scientific nature of experimental treatments, and a need for ‘control’ groups, but facing a future with neither plan nor progress is... 

This future is indeed many things.  Most of all, this is difficult.  How do we plan a future?  How do we live the experiences for us and for Ellie that need my full physical participation?  I know there are alternate accommodations we can always make, but what if I am not ready to give up these paths for alternates?  My family needs me to adapt, but when and how far?  I’ve adjusted so much already.  If the time comes, I’m sure I will adjust as much as I have to, but do I have to blindly accept that?  In the past, if I really wanted something, hard work and a dedicated focus would assure success.  Last week I saw a healthy, active future as something I could not expect even with the most diligent work and dedication.  For the first time ever, I saw something I still deeply yearned for as “difficult.”

OK, that’s new.  Now what?  Incredible family members, mentors, teachers, and peers are still here.  They are still ready to guide and support me.

As my doctor reviewed the medical literature and my history, I could see his emotion build.  Almost angry at times, this globally renowned MS-specialized neurologist vowed to pursue every option, including pulling me from false paths and exploring unproven options together.

All the time, Brie sat quietly and listened.  Only when the time was right would she step in, to review treatment options learned from her own research or dig deeper into options she knew could be on the table.  Their sometimes-heated assessments of existing and potential MS treatments were quite amusing to watch.  We’ve talked on our own, as well as with therapists to help us remain strong for the fight that lies ahead.

Among our hundreds and hundreds of supporters of our Bike MS campaign, one message stood out during this pivotal week in my life.  Bob Foley is more than a supporter.  The retired 3-star general was my Commandant at West Point and the inspiration for our Never Stop…Never Quit… mantra.  Once again, his words of strength and support struck me with awe.  In part, he wrote:
Keep fighting and keep writing.  Your journey has created a legacy a legacy that will benefit others for years to come.
When a legend writes about your legacy, you pay attention.

On Thursday, our local friends and supporters gathered at Journeys Pub for our 7th annual Wine, Beer & Bike MS fundraising event.  It is impossible to describe my emotions surfacing as the evening unfolded.  Months and months of hard work, even before last year’s event ended, from our volunteers brought together an amazing array of raffle items from a slew of incredible donors.  Journeys hosted the entire event and rallied generous supporters from across Portland!  Every person volunteering, donating, and supporting echoed the same message to me.  They wanted me to keep fighting.

None of these incredible people are the least bit disappointed in me when I use my cane, have to wear a brace, or stop moving when my body has reached its limit.  They won’t be disappointed if I am in a wheelchair next month, use a walker next year, or stop other activities if my body no longer has those limits.   They all can see an ultimate success, even if my own understanding is not yet developed enough to see this on my own. 

But they do want me to fight, and to fight as much as I can until we win.  So that is what I will do.  My schedule is filled with appointments to assess my current state and develop those next steps.  Brie and I spend much of our time with doctors, physical therapists, and counselors to help develop my physical and our emotional roadmap.  If this isn’t working we will pursue every option and potential.

All the time I will keep fighting and keep writing.  I am not quite comfortable with the term legacy, but I welcome the hard work and dedicated focus I’m prepared to give to achieve those lofty goals.

With your support, maybe this won’t be so difficult after all.

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!

Kevin Byrne - Portland, OR


Sunday, August 9, 2015

Help me expand my fight against Multiple Sclerosis!

I send out a lot of fundraising messages, but there is no way I can reach across every friend, contact, and colleague.  Please help me expand this fight.  Enlisting more support may not be fair, but neither is MS.
Whatever it takes...

Fight; that is all I want to do. 

I grew up REFINING the tools I would need to fight and strive for my goals.  My West Point and Army legacy taught me HOW to fight.  Today, I am constantly reminded WHY my fight needs to go on.

That was the ideal guiding me through Oregon Chapter’s 2015 Bike MS on August 1-2.    This is my after-action report:

My fundraising goal this year is $75,000.
$75k will launch the MS research career of a promising postdoctoral fellow.  Today, there is one such fellow at Oregon Health & Science University testing thyroid hormone-like drugs to see if they will improve myelin repair and to determine their potential for development as a treatment for MS.

This is what I need!  Please help me get closer to these goals with a donation to the National Multiple Sclerosis Society in support of 2015 BikeMS. 

My Multiple Sclerosis fight is now in its 16th year.  At the end of 2015 I will mark a major milestone as I complete a two-year clinical trial.  The goal of the trial is to find a treatment, if not the cure, for Secondary Progressive MS.  I have spent in excess of three years as part of this study, looking to stem the progression of this disease’s advanced stages.  Fighting back is the only option.  If this research doesn’t lead to a breakthrough, I will charge ahead in support of another chance.

My arms and hands are failing; my voice is weak; my days upright and mobile are fading.  My fight, however, remains strong.  A World Free of MS is still the vision.  The new cases of multiple sclerosis diagnosed daily remind us that we don’t yet have a cure.  The rapid worsening of my own disability is a reminder of the paramount challenges for all affected by MS.

We will win this fight.  My goals still remain set on the recovery and rehab I’ll need to dance with my daughter, Eleanor, again.  If I don’t reach that target, I’ll continue fighting to ensure her generation never has to hear the words “YOU HAVE MS”.

Last year’s efforts for BikeMS were a smashing success!  Our fundraising under Eleanor powered the Oregon chapter with nearly $57k.  I’m looking forward to updating you on our progress throughout: 
•             Read my stories at
•             Keep following our progress and excitement at
•             Join our Facebook efforts at

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!

Thank you for all of your support and motivation.

Never Stop…Never Quit...

Tuesday, August 4, 2015

Bike MS 2015 – Boom (the ride, part II)

For the 13th year, Bike MS erupted this weekend with a loud and thunderous boom.  For the first year, my goal is simplified to raising money.  Money will fund research; that is my last option for a healthy, active future. 

Before the ride I made three commitments to my supporters.  This is how I fulfilled my pledge.

I Rode
In 2012, I rode the Day 1 century option (100-miles) on my trike, despite brutal 103⁰ heat.  I also rode the 2-day Seattle-to-Portland ride a month later.  In three years, secondary progressive MS has torn my body to pieces.

I clipped into my trike Saturday morning as early as possible, to avoid the heat of another triple digit ride, determined to stay there until I rode as far as my body would allow.  I was planning on 64-miles, wanted to do 81, but hoped I could do 33.  After 1 mile, I wasn’t sure if even that was possible.  My left side has suffered most of the damage from the effects of my MS over the last few years.  Weakness, loss of function, and spasms in my leg and arm are normal.  Up until that first mile, I had hoped for a bit more energy that morning. 

One leg is badly battered and bruised, but at least my other is still bent!  Riding a recumbent uses a muscle group that is much different from pedaling regular cycles.  When you develop them, you finally understand what the term 'bent legs' is really all about.  My right leg was strong enough to pedal my 35-pound trike the full 33-mile route, all the while fighting resistance from my left leg.  Using two rest stops to rehydrate, plus pulling over one time to stretch and ease painful spasms up that left leg, I crossed the finish line content that I gave all the effort I had.  

Brie caught up and rode alongside me for the last 8 miles.  At the time, she could see the struggles I was having in my left leg and arm.  I was happy to have her there to guide me as my eyes rapidly lost their ability to focus.  Together, we crossed the finish line in triumph.  Any possible anger or resentment over my losses already faded, reinforcing my commitment that I will continue to ride!

I Write
It seems that the weaker my body becomes, my words help me feel stronger.  It wasn’t too long ago when my goal was to portray a pictures of strength and determination, physically overcoming any issues my MS brought forth.  Contrary to the mindset of my prior 43 years, I know that I can’t win this fight with stubbornness alone.  I need the support of my community.  My community, in turn, needs to understand what the struggles of those fighting MS look like, what they feel like, and what we hope for every single day of our lives.

My stories will always portray that look, feel, and hope.  Until those stories turn towards a portrayal of that ultimate victory, a cure for multiple sclerosis, this is the voice in which I will continue to write!

I’ll Never Stop… Never Quit…
I passed just over 20 miles on Saturday when I reached a point where, to steal a phrase from a fellow West Point alum, I felt that hope became forlorn.  My left leg was useless; there was no feeling except the aching pain deep in my ankle, which was strapped tight in a brace and clipped to the pedal so it could not escape.  Its only job now was to taunt me.  My arm was weak and numb, just laying across my waist.  I pedaled my trike almost exclusively with one leg, while I steered with only one arm, trying desperately to focus my sight and keep myself pointed in the right direction.

Any pity or self-loathing was interrupted by my own grumbling.  I caught the irony that I was tired, sore, and irritated by the challenges faced while riding; the challenges I faced BECAUSE I was riding.  I still have the fortune to ride so I made a promise to not waste it. 

Bike MS 2012 was my stake in the ground for “Tracking my MS”.  August 4, 2012 was the measure of 100% I use to compare every day that followed.  This weekend, my personal evaluation was 65%.  That needs to change.  Before Brie caught up with me I finalized a plan for what I need to make that change.  This is my future.

Changes in my lifestyle, diet, and exercise regimen are the focus for my body.  I’ll work with my doctors, physical therapists, and family on this every day.  I need to remain prepared for a long fight, ensuring I maintain the strength to win.

I’ll work with Brie and Ellie, my loving family and friends, and any other resources needed to focus my mind and soul.  This fight is not a fair fight.  Those close to me should never again suffer the pain of unnecessary struggles.  We all have better things to focus on!

I’ll work to find a treatment for my MS, and hopefully a cure for all those fighting with me.  The hard part is in the hands of doctors, scientists, and research fellows.  Their job is to develop those treatments, to find that cure.  My job is to help raise the money they need.  With your help I will Never Stop… Never Quit…

It is a fight. For approximately 2.3 million people with MS worldwide, the fight is not over and it won't be over until the cure is found.
It will never stop….nor will we
It will never quit….nor will we
This is why we ride.

Please support our fight

I welcome everyone to join me on this journey; together we will see this fight through!


* Inspiration: P.O.D., “Boom”, Atlantic , 2002