Friday, July 31, 2015

Bike MS 2015 - Fuel (the ride, part I)

My Dear Donors and Supporters,

Much of my free time is spent planning, writing, and fundraising for our fight against MS.  Unfortunately, there never seems to be enough time to finish all work I start.  Of the many duties I am short on this year, most important is the responsibility to thank my supporters of our fight.  I need to pause and take a moment for that now.

First and foremost, thank you.  While searching for ways to better define my thanks in words, I read back through recent articles on managing my MS (after 16 years, my desire for guidance and ideas remains strong).  I came across this gem:
Set Priorities
Nothing is more exhausting than a to-do list filled only with things you “should” do. That’s especially true for those with MS, who need to conserve their limited energy. Instead of saying “yes” without thinking, start with “no.” Make a daily activity log, and prioritize items into those you must do, those you'd like to do and those that would be nice to do if you have the time and energy. Focus on the higher priority items -- those that are truly important to you. When possible, enlist the help of others when tackling that to-do list. ^1

So much is there in only one paragraph; it’s hard to select a single reaction over all others.  I’m torn between two, from the echoes of my friends and loved ones who will chuckle at this note and say, “I’ve been telling you that all along,” to the nagging voice in the back of my head insisting “there is no way in hell I will start with ‘no’.  I’m bred to say ‘yes’ without thinking and I have no intention of backing off.”  An ideal choice must be to work with something in between those two.

Jumping headstrong into a bounty of projects and efforts, I usually run out of time and energy well before I satisfy my list, yet I’ll readily commit to adding more without thought.  Here is where I have an army to offset my limitations.  My support spans from Brie and Ellie, my loves and energy; to our terrific team captains, Tommi, Sue, and Matt; to our wine & beer fundraising champions of Michelle, Tom, Shannon, Bob, and Tim; and finally the never-ending list of loving outreach I receive every day from you, my family of donors and supporters.

I’ll often commit to fundraising efforts hoping, or knowing, someone will help me cross the finish line.  Still, there are some areas I must hold tight and see through myself.  Those areas contain my gratitude and dedication.

Your support and donations fuel the only option I have for a healthier, active future: research.  Current treatments are not holding my disease at bay.  Maybe, at best, those efforts are slowing further progression of my MS.  I’m not ready to have the term “it could be worse” satisfy my hunger to find a cure, my desire to resume my old activities, or my wishes to explore a wealth of new adventures with Brie and Eleanor.

After 13 years of fundraising in support of our fight, your support continues to define the mantra fueling our every step: Never Stop… Never Quit…

I can think of three ways to share my thanks; three efforts I will never push off for others to complete without me.

I Ride
Tomorrow, for the 13th year, Team Amulet rides!  With temperatures forecasted around 99 on Saturday, I’m not sure what my body will have in it.  I’m planning on 64-miles; I would love to do 81; I hope I can do 33.  It’s hard to watch my physical abilities fade so quickly but one saving grace remains.  Whenever I finally cross the finish line, at whatever distance I was able to ride, I will have left nothing in my reserve.  Saturday is for boasting about what I can do (thanks my incredible treatment and support), just how far I can go (giving 100%), and what I have to look forward to when we do find the treatments or cure I need. 

Tomorrow, and every chance possible until we find the cure, I ride.

I Write
My MS created a need for me to talk and vent on my fears, hopes, losses, and optimism.  Eleanor, and the Portland Veterans Administration teamed up in the most unusual manner throughout 2009 and ’10.  They provided me a constant audience for my stories.  For sharing this load, surely Brie remains in their debt for many years to come!

That strange trio sparked a love for writing within me before my legs and arms started to fail, not as compensation for these issues.  As a result, my words share my emotions rather than comfort them.  Writing is one of the few activities never hindered by my disabilities.  Through the ebbs and flows of my struggles, words are one constant outlet for my energy. 

My heart overflows with gratitude for all my readers who support me with their encouragement.  Since starting with the VA on 4/15/10, this will be my 52nd blog.  My journal to Eleanor, My Little Love, already holds over 2,200 pages of her Daddy’s life.  My first attempt at a novel will hopefully be drafted in full, ready to edit, by the end of the year.  There may be another future for me when I retire yet again someday!

I’ll Never Stop… Never Quit
At the risk of standing on this soapbox far too long, I must share again the reason why I do everything to support our fight.  I’ve already written this countless times but the message reigns true. 

Why it this weekend so vital?

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.

Thank you again for your incredible support.  I welcome everyone to join me on this journey; together we will see this fight through!


* Inspiration: Metallica, “Fuel”, Elektra, 1998

Tuesday, July 28, 2015

Bike MS 2015 - Whiskey In The Jar



My MS and E

A typical, cherished interaction inspired one of my 2015 Bike MS blogs. That story took on a life of its own.  Now, Eleanor and I are proud to announce the release of our children’s picture book.

My MS and E
100% of the profits earned from this book will be donated to the National Multiple Sclerosis Society, in support of our fight against MS.

Ordering Info:
The source of purchase directly impacts the total amount of profit donated. The book is now available for purchase:
Direct from the author (signed, if requested):
From the publisher, BookLocker:
Also available through all major online outlets (Amazon, Barnes & Noble, Books-A-Million, and many other smaller, online bookstores, both domestic and foreign).

About MY MS and E:
ISBN: 978-1-63491-592-2
Kevin and Eleanor share an unbreakable father-daughter bond, even in the face of his ongoing struggles with multiple sclerosis. This story is a heartwarming tale of how they grow, learn, struggle, and celebrate life in their mantra of Never Stop… Never Quit…

Supporting Our Fight:
This is a work of love and thanks, sharing just a glimpse of what I see every day in Ellie! Buy the book and enjoy our adventure. Beyond the support of our friends and networks, please share this where you can to expand our outreach.

Welcome to the next level of our fight!
The fight is not over and it won’t be over until a cure is found.It will never stop…nor will weIt will never quit…nor will weThis is why we fight!
 Never Stop… Never Quit…

Monday, July 27, 2015

Bike MS 2015 – Wasting Time

I reconnected with an old friend of mine this weekend.  Though close when we were young, we last spoke many years.  Our relationship was relegated to the status of “Facebook friends,” those who connect through pictures of their kids and general updates on life. 

My pal reached out in the most spectacular way: through a donation to our Bike MS fight!  He found the link on my Facebook page and wanted to support.  There was only one question he had one question for me:  “Dude, why are you writing haikus?”

My answer was simple.  “To get responses like this,” I said.  Perfect.

I write stories to share my message, to share my fight, and to gain your support.  If it takes a haiku to get your attention, so be it; that’s what I’ll write.  This is my fight, as told in the form of traditional Japanese poetry.

The blazing sun thrills
yet My trike never quits me,
Donate to end pain

Never stop 'til cured,
beer and wine are the choices
Team soaking in pools

Chopsticks hold the prize;
my long love is found anew
As rain falls around

Never quit our fight;
A cure is the only end.
Dancing with my loves

money finds the chance
As daylight breaks through my spokes,
Our legs never tire

I lumber the climb
as new life joins our family
A new summer spring

Crest over the peak,
Before the summer sun swells;
I may ride sixty

What will it take to get your support?  Next up: my story in the voice of Dr. Seuss!

Whatever it takes…

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

* Inspiration: Kid Rock, “Wasting Time”, Atlantic Records, 2000

Thursday, July 23, 2015

Bike MS 2015 - Fight Fire With Fire


My message is going out everywhere with just one intent. I want to gain all the support we can drum up for our Bike MS 2015 campaign.  Please click on the link above and support our fight against multiple sclerosis.

Fight: that is all I want to do.

My youth in the Bronx, my West Point days, then the Army REFINED the tools I would need to fight and strive for my goals. With my MS, and the start of my second life, I started to learn HOW to fight. Today, I am constantly reminded WHY my fight needs to go on.

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 nearly 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.

The new cases of multiple sclerosis diagnosed daily remind me 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. My arms and hands are failing; my voice is weak; my days upright and mobile are fading. My goals, however, remain strong. Words are my strength today, so that is how I fight. A World Free of MS is still the vision.

We will win this fight. My goals still remain set on the recovery and rehab I’ll need to dance with my little 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”.

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

* Inspiration: Metallica, “Fight Fire With Fire”, Megaforce Records, 1984

Sunday, July 5, 2015

Bike MS 2015 - Die with Your Boots On

What are the stakes in this fight?  Take a moment, if you will, and just say two words: Multiple Sclerosis.  Say them, then pause to reflect on what those words mean. 

Multiple Sclerosis  

What thoughts come to you?  Descriptions like disabling, unpredictable and crippling often top the list for many, as do images of wheelchairs, walkers and crippled victims.  The devastation caused by MS is rarely thought of as fatal; people don’t die from MS.  In the past, my own thoughts often pulled the same visions.  I would try to picture what could happen to those afflicted with this disease if we didn’t find a cure for them.

The reality of the matter is quite different.  I am one of those afflicted with this disease; if we don’t do something about my MS I will probably die from it, 5-10 years earlier than my peers, after enduring those years of disabling, unpredictable and crippling effects that will drive my crippled body into wheelchairs and walkers.  Statistically, I will die from a sepsis (complication caused by blood infections), aspiration pneumonia, respiratory complications or an accident caused by my failing limbs.  Suicide is another prevailing cause of death among MS patients.

In August, 2014, the National Institutes of Health published an article titled “Causes of Death among Commercially Insured Multiple Sclerosis Patients in the United States” (   This was the result of one of the several recent studies commissioned with the goal of gaining insight into factors which lead directly to death in MS patients.  In this study, for 61% of the patients diagnosed with MS, the disease was recorded as the Principal, Underlying, or Immediate cause of death.  This report portrays a somewhat rosier picture than most other journals I read.

I studied this report, inserting my future into their findings.  In the context of my past Army life, this fight against MS echoes eerie similarities to a military last stand.  Today, with my severely damaged body facing an enemy of overwhelming odds, I have limited options to consider.

I will never quit, never give in, and so it’s unnecessary to review that course of events.

I can stand firm, strengthen my defenses and attempt to fend off the unending attacks that are coming.  With luck on my side, my body may be able to sustain these delaying operations long enough until reinforcements arrive, in the form of a cure for MS.  The odds of enduring that siege until a cure is found are slim, at best.  I don’t want to be remembered for “holding on for a while” while MS ravaged my body.  Besides, I’ve never shown any interest in that level of patience.

My preference will always be for the single viable alternative: attack.  Army doctrine details value for a force in defense to always prepare, while simultaneously denying the enemy and increasing their vulnerability.  When the operational initiative is set, exploit the conditions for a counterattack.  

My body has been on defense since I was first diagnosed in 1999, under intense attacks for the better part of three years now.  Rather than merely making preparations to hold on through a siege, my focus instead remains:

  • Disrupting the advancement of my MS, through medication, treatments, activity and lifestyle.
  • Creating alliances and building reinforcements, through outreach, stories and celebrations with my ever-growing my army of supporters and donors.
  • Collecting and allocating the needed resources, by fundraising to support the innovative research and ideas that will find a cure.
  • Preparing to exploit that operational initiative, the day we find a cure.  

From that point forward we are the ones setting and dictating the course of this disease.  This battle is moving along just the way I planned it!  Perfect.

As years pass, my words are refreshed time to time.  The message, however, never changes.  
Attack; there is no other option and so the fight will go on!

It will never stop…nor will we
It will never quit…nor will we
This is why we fight!

Please consider making a donation to the National MS Society to support my fight:

Kevin Byrne - Portland, OR

* Inspiration: Iron Maiden, “Die with Your Boots On”, Capitol Records, 1983

Wednesday, July 1, 2015

Bike MS 2015 - Hit the Lights!

Our tagline captures almost every reason why I ride, write and fight:
Never Stop…Never Quit…

It’s direct.   It’s simple.  It’s the quick quip used to simplify our mantra:
It will never stop…nor will we
It will never quit…nor will we
This is why we ride!

Even in that testament, however, we leave out one ever-present caveat: until.  The fact is this fight won’t be over until a cure for multiple sclerosis is found.  When that day finally comes, we’ll happily move on to focus our passions and support elsewhere.  Until that day comes, that day when until arrives, one word will stand out above all others: NEVER. 

Every day, we face the threat of never.  I struggle with my own worries that I will never again realize the function I’ve lost in my hands, arms, legs and throughout my body.  Others fear that they will never again see the man once they knew as daddy, husband or friend.  We all face a future where I will never be as strong as I was yesterday, waking every succeeding day only to face a repeating pattern of decline. 

But never is also a saving grace, giving me the courage I need to face this threat day after day.  I will never accept my fears, just as my family and friends refuse to succumb to their own, even as they are bearing down on all of us.  Instead, we will always fight…until the day comes when we don’t have to anymore. 

Never is the thought that guides me as we kick off Bike MS 2015.  That single word describes the reason why, for at least one more year, I will dust off “all things Bike MS” to kick off our biggest fight to-date.

With less than 5 weeks remaining until we ride, Team Amulet is sure to be ready for 2015.   Team building and training have been underway for some time; 40 riders strong today and still growing!  Bike MS fundraising events and excitement are also rolling out all over Portland.  There will always be a bit left to prepare, but, as a team, we’re ready. 

Personally, the fight goes on.

I think my body is strong enough to ride on August 1st, but how far I will be able to push remains to be seen.  Every single day changes that outlook.  As I face my fear of never, my preparation embraces the same word.  Never is the reason I continue to push.

My first effort is always the health of my body, as it fights existing damage and faces threats of danger from my MS.  A regimen of medication and supplements compliment my current clinical trial, diet and rest cycle.  I have an army of champions in this corner as well.  An amazing team of doctors, from both Providence Health & Services and the VA Healthcare System, work together to monitor and treat my disease with the best options available today.  Brie is my supporter on a healthy diet, ensuring I remain active in our family and always keeping my schedule sane.  Eleanor is my all-around hand, everywhere in every way, even portioning out my daily regimen into the AM/PM pill dividers for me with her nimble fingers while helping ensure everything is ready, clean and safely stored!

Next, I focus on the strength in my body.  A routine mix of strong workouts 4-6 times a week in the gym, plus our active family life, helps my physical preparation.  In these final few weeks I will take the opportunity to put in some extra work on my legs, ensuring that I can ride the shorter bike route while testing to see if my body can push just a little bit further.

Finally, as we step into this season, the time has come for my spirit to carry me.  Fear and worry must take a backseat for a while, replaced by motivation and energy.  That is where I stand today, braced by the raw motivation and energy I continue to build.  This emotional level is where I’ll stay throughout Bike MS 2015, though many of my friends would describe this as the “typical-KB behavior” they have come to know. 

I look forward to embracing the entire MS community, all of my friends who fight alongside me, through my words and voice.  I’ll welcome new friends, so that we can motivate each other as we fight for the same goal.  I’ll reach out for donations and support as far as my words and voice will carry.  All the while, I will honor and give back to my community by doing exactly what they expect from me: I will never, never stop fighting, until the day comes when I don’t have to anymore.

My focus this year is to exploit that raw energy and motivation fueling my emotions.  The stories I share will echo that sentiment.  Every story will have a theme inspired by the raw energy in my Bike MS 2015 road music.  Every story will bring us one step closer to until.

I am honored to have another chance to fight.  Hit the lights!

It will never stop…nor will we
It will never quit…nor will we
This is why we fight!

Kevin Byrne - Portland, OR

* Inspiration: Metallica, “Hit The Lights”, Megaforce Records, 1983