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: http://neverstopneverquit.blogspot.com/2015/08/bike-ms-2015-boom.html.


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 www.neverstopneverquit.blogspot.com
•             Keep following our progress and excitement at www.neverstopneverquit.com
•             Join our Facebook efforts at www.facebook.com/groups/TeamAmulet

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...
  Kevin



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!

Love,
Kevin





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

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!

Love,
Kevin







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

Tuesday, July 28, 2015

Bike MS 2015 - Whiskey In The Jar


We're revising this story, so that Ellie can share with the world.
Stay tuned...
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!

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