Tuesday, May 24, 2016

Don't Pity That Man

You may find it pitiable to watch that man suffer. You may feel sorrow as he stumbles while trying to walk, searching for a footing or a handhold, his ever constant stare gazing ahead, unbroken, facing forward. No smile will interrupt the moment. Happy children dashing about may only elicit a stern warning for caution or restraint. Beautiful scenes pass in front of him yet there is never a pause for admiration.

There is nothing you can do to break his focus while danger still prevails, under the guise of happy frolicking and carefree wandering. Your joy is his fear; your wonder is his peril. Joy and wonder are yours to enjoy, as is the time you have with him. Nothing should change your moment. Your feelings of peace, beauty, and awe should never be conditional upon others, especially that man.

Don't pity that man, for it takes away from that which you have earned. If he knew you lost a bit of joy, he would lament over what he's taken from you. Enjoy yourself! Enjoy what is in front of you: nature, the children, that man.

As for that man, do not worry for he is happy. Take solace in what his stern appearance represents. His focus is only in anticipation his next step, so he can assure the wonder and amazement he feels will continue. He is with you, maybe doing what he shouldn't do or couldn't do but only because of your presence. No moments of his contain anger. Focus and warnings are only measures to preserve this for him.

Preserving the moment, enjoying the beauty all around, and expressing wonder are simply too much to focus on simultaneously. Expressions are expendable when the preservation of the other two are concerned. Without preservation, without enjoyment, none of the other exist.

In time, he will share his joy. When he does, those emotions may be again subdued by focus on the moment at hand, or the next movement, or the next... It is the greatest loss burdening that man who suffers. For most, enjoyments of the world invariably elicit a need to share. That man who suffers is different. He can preserve the moment only if he focuses on dangers lying ahead. He can enjoy the moment only as long as he can preserve it, as long as his demons don’t take it away from him. He will express wonderment only when the fears of failing to preserve subside. Those fears rarely do. Those fears always return.

But please, never give up on that man. Never feel pity when sharing your moments with him. The excitement of reaching, of experiencing the next wonder, is the only reason he continues to search and stare ahead.

That man who suffers isn't suffering at all. I assure you. He is grateful, for he has a chance. He is thankful you are with him.
 ~ that man

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

Tuesday, May 10, 2016

Certavi et Vici

Please forgive me for my bit of a rant.

Is this a fight I have any chance of winning? 
For the last six months, I have struggled with that question, praying for the best, expecting the worst, all the time wondering if I would ever find an answer.  Worse yet was my persistent fear of the obvious answer I may end up facing: no, you do not have a chance.  I looked for signs, for clues as to what lay ahead.


“So, how are you doing these days, Kevin?”

“I’m struggling.”

“Are you holding altitude?”

It was a fair question; his carefully worded attempt to connect with me at this critical time. He knew my background. The question was carefully phrased in such a way as to capture my full attention, so I worked to form my answer within that same context.

Am I holding altitude? Shit, I had no idea if I was maintaining anything, be it altitude, airspeed, or what direction I was even facing. Any cues I may have relied on in the past now seemed to be of little value to me.

“I don’t even know what my attitude is these days.”

Even through the anguish of my reply, the irony of my words made me chuckle a bit.  My attitude, in every sense of the word, was in danger, well beyond mere terminology of pitch, roll, and yaw.  At the end of last year, my health was continuing to fail.  The pitch, roll, yaw of my healthcare progress, this slow decent of Secondary Progressive MS (SPMS), was taking its toll on me.

In this conversation, much like many others, I relied on familiar aviation terms, which helped me so much in the past, to plan on my future.  One day, I found myself thumbing through old Apache technical manuals.  My search for the best emergency procedure was where I found guidance.

LAND AS SOON AS PRACTICABLE: defined as landing at a suitable landing area. (The primary consideration is the urgency of the emergency.)
Get on the ground, then figure out what you need.  Blindly maintaining my current course was of no value to any effort, so I planned to land.  Practicable was January 1st.  I would pause then, to evaluate the urgency of my needs.  A pre-planned short term disability combined with a revised treatment plan was a nice target to have for the new year.

How long would I need? I had no idea. With 6 months of short term disability available, I was at least comforted by that stability for the moment.  The prospect of needing six months, with the possibility of still finding no clearer path ahead, frightened me.  I tried to shield myself from worrisome ‘what-if’ scenarios, instead focusing my efforts on preparations for my time away.

As the new year approached, my checklist was nearing completion.  Work requirements were mostly reassigned, physical therapy appointments scheduled, and my new medication regimen was already in place. After two and a half years off-treatment, while I was on a drug clinical trial for SPMS, I was happy to resume attempts to stave off further decline. Sometime in the middle of ‘17 the last patient enrolled in the trial will complete their course, then the results will be unblinded and analyzed. I pray this trial shows some promise, for there is nothing available right now. I hope to God that I was part of the untreated control group, on a placebo throughout the trial, or this course has no promise to offer.

LAND AS SOON AS POSSIBLE: defined as landing at the nearest suitable landing area (e.g., open field) without delay. (The primary consideration is to ensure the survival of occupants.)
The only true hurdle left was the holiday season. Christmas, my birthday, New Year’s Day.  When I first made plans for this time off, the thought of spending the holidays out on disability was a bit too much to handle. This schedule would be easier; get through the holidays and then focus on ‘what’s next’.

Starting a couple of weeks before Christmas, my energy level dropped.  Weakness, irritation, hot flashes, and cramping were all known, common side effects as my body adjusted to my new medication. Known side effects, especially short term symptoms, are common issues faced by anyone undergoing treatment for chronic illness.  It’s an easy tradeoff for most of us: some short term issues, regardless of the severity, are as far less scary than the unknown future unfolding before us every day.

December 28th
After muddling through my growing struggles for a few days, I lay in bed that Monday morning, my left side nearly completely shut down.  I never before experienced panic on such a scale, as a volley of thoughts and questions ran through my mind:
·         I asked myself over and over, “Will I recover from this or is this my new life, laying here in this bed?”
·         I closed my eyes, imagining what my life will be like if I remained bedridden from this day on.
·         “Happy Birthday, KB!”

Using every bit of strength I could muster, I pulled myself from the bed as Brie was on the phone, navigating my healthcare provider options.  MS lesson #4,872: don’t have issues between Christmas and New Year’s Day.  Based on availability, the ER was our directed option. After sending a quick note off to my workmates, declaring this day as my disability start date, Brie and I headed off for yet another fun date night at the VA hospital!  Happy Birthday, indeed.

The ER was packed; an unusual flurry, even for the standard expectations of this holiday week. At the registration desk, the nurse informed Brie we may be waiting for several hours.  That was her cue to get ready for a long night.  She helped me settle in a chair, give me a kiss, and headed off to park the car.

Not more than two minutes passed from the time Brie stepped out of the ER to when the nurse called me back. My condition, medications, and history raised enough flags.  The need to triage me, send bloodwork off to the labs, and get IV fluids in my body outweighed the requirement to wait for a room.  I spent the next four hours laying on a gurney in the middle of the hall, just off the nurse’s station in the emergency room.  Unable to move my arm, or even curl my fingers into a fist, I just sat there and watched my caretakers bustle from room-to-room and patient-to-patient as ‘Is this my new life?’  echoed in my mind over and over.

“Stop taking your MS medication.  Go home.  If you don’t show any signs of improvement in a few days, come back.  Follow up with your neurologist.”

If the doctors don’t know what’s wrong, there isn’t much they can do.  My symptoms didn’t give the appearance of a new exacerbation.  Extreme treatments may not help, and may even cause further damage (I can only endure so many doses of steroids). If the reaction was indeed my medication, and that was the unanimous guess, the immediate recommendation had to be ‘Stop doing that’.

Sometimes there isn’t much to offer. If it was permitted, I’m sure the doctor would’ve left one final note in my discharge record: Go home, rest, and pray.
That’s exactly what I did.

Reduce, Reuse, Recycle
From the moment I woke up on December 29th, Day 1, I was strangely aware of my surroundings. I noticed myself lying in the same position, flat on my back with my arms and legs extended straight down, the exact position I fell asleep in almost 10 hours prior. I paused for a moment, wondering if this was going to work. In one fluid motion, I swung my legs over the bed and stood up. Rubbing my eyes as I turned around, I looked down at the bed and mumbled under my breath, "Well, shit, I guess the doctor was right". Overnight, my body recovered. Later on, my docs would explain their theories.  Severe immediate gastrointestinal intolerance to the medication that significantly inflamed all of my current symptoms. Once we stopped medications, the side effects subsided immediately.  I recovered overnight, though my body was showing more wear than normal.  Fall back ten steps then struggle to recover nine, maybe less than that.  How long can I do this? 

Day 1 was here. Regardless of how it happened, I was now on the ground. My revised treatment plan needed revision, in every way. I now had time to focus on it.

For a few days, the looming question “Is this a fight I have any chance of winning?“ subsided.  My focus turned to the very few pieces of my life I wouldn’t place on hold: my family and my health.  Feeling as if I was reintroducing myself to Brie and Ellie, I realized just how much my fears and worries had consumed me.  Cooking meals, grocery shopping, drop-offs, and date nights was more important than just about anything else.  For the rest of my life, my goal will be to remember those wonderful days and the message they held; my family should always remain more important than anything else.

My health was going to be a more arduous task.  Once again, MS medication proved unsuccessful.  I have been on six different FDA-approved medications for treating relapsing-remitting MS (RRMS).  Five have sent me to the emergency room, for a variety of side-effects and intolerances.  All too often, I have had to sit through puzzled explanations of “we’ve never seen that before”.  It’s an awful conversation for caregivers to have to give; I can see the anguish on their face when there is no answer or explanation they can offer.  Personally, I’m tired of being a medical anomaly.

The next step? I went back to an older medication, the one I was on prior to my SPMS clinical trial, the only option my body hasn’t rejected. Though I am no longer classified as RRMS, this medication remains crucial to my healthcare as a focus to prevent further relapses while I struggle with the debilitation I already have.

I was reborn in March, just 10 weeks into my short term disability.  My body and mind were refreshed.  My new medication regimen seemed stable.  With my new leg brace, midday walks increased to 3 and 4 miles!  This was a fight I started to show signs of overcoming (again).  Back at work, with a refreshed sense of hope and enthusiasm, I sat down to pen the first story of our 2016 Bike MS campaign: Phoenix rising from the ashes!

Then came April…

April 15: my follow up evaluation for my new brace.  The concept of the brace is to deliver programmed, low-level electrical stimulation to activate nerves and muscles that lift the foot, giving me added mobility.  The practical result was indeed welcomed added mobility!  The unfortunate side effect was 3rd degree burns on my calf from excess electrical stimulation.  Yet again, the term “we’ve never seen that before” came up.  No, I’m not used to it yet.  Yes, I still hate hearing it.

I struggle to find a way to make this brace work for me.  The benefit is so significant I actually wonder if taking the days or weeks off if need, to let the bruises and burns heal, is sustainable in the long term

April 24: I have been tracking my MS in detail for a little more than three years now.  My progression is definitely not linear; daily changes are often subtle.  How I feel every day, how I grade myself, will jump when I realize the subtle differences are now significant.  In the past, those ‘resets’ were months apart, usually coinciding with a change in seasons or some other noticeable shift.  No longer even weeks apart, changes in my progressions are noticeable now day over day. 

There comes a time in every battle where dramatic shifts in life change the outlook: the last day I xxxx, the day I needed xxxx.  On the 24th, my average rating stuck to new lows below 60%.  I asked myself, “Is this the breaking point?”  Little, subtle issues no longer seemed so subtle.

By the end of the month, I had grown tired of all the setbacks.  I was frustrated with the prejudices and m limitations set on me by others, but worse so by myself. The looming cloud of ‘everything’ was overwhelming.  As I wrote, then rewrote, this story I began to wonder.  Am I telling the story of my triumph over MS?  Am I chronicling my overwhelming disabilities.  Am I just documenting my decent into madness as I battle physical ailments, emotional stresses, and imaginary demons?

How long can I do this?
How long do I want to do this?

I truly don’t know the answers to these questions, though I search for signs all the time.  A friend of mine interrupted one such session the other day.
“What’s that?” <pointing to the tattoo on my arm>

                “It’s my family shield.  Byrne.”  I traced my finger along the outline.  “The three hands stand for sincerity, loyalty, and justice surrounding a chevron, the strength of the shield.”

“What does that say below?” 

Just then, it hit me.  I’ve carried the answer all my life; the words are etched into my skin.

                “That’s my family motto.”
Certavi et vici
I have fought and conquered

It’ll never be true if I don’t 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 fight!

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

Tuesday, December 15, 2015

The Realist and The Optimist

“You’re enough of a realist to prepare for that; but I’m enough of an optimist to hope…”1

But the realist knows.  Rarely, if ever, will they lose grip on hope for the best, even as they expect the worst.  They key is to prepare for both.  When the worst never comes, there is no greater satisfaction than when you realize all those preparations were for naught.

Lately it seems like all I do is prepare.

My clinical trial officially comes to an end today.  I’ve tried my best to avoid personal assessments on the experimental treatment.  After almost two and a half years, though, I can comfortable say either the drug doesn’t work or I was receiving the placebo (a 50/50 chance).  Personally, I hope I was in the latter, for there would be no greater satisfaction than to have spent 28 months unmedicated for such a worthy cause.  Medical science needs that comparison; regulations require that control group.  My results of will publish as one of 175+ participants, when the complete trial ends 5-6 months from now.

Now what?  My body is failing.  Apart from the obvious (I have MS), we have no firm understanding of what is sparking these issues, how long this decline will continue, whether it will improve or worsen, and so on and so on. 

I’m not quite ready to accept this without a fight, but where do I direct my focus? 
Everywhere that matters.

As this trial completes, my care moves back fully into the VA System and their exceptional MS healthcare.  There are still no viable treatments for Secondary Progressive MS yet I’ll start another new round of medications called DMTs, or disease modifying therapies, not with an attempt to recover loss but intending to reduce the chance of further attacks.  Of the four prior DMTs I have used, three led to life threatening complications.  One was tolerated well, but then stopped in support of my clinical trial.  I’ll continue treatments with options available; the hope prevails that a better option is just around the corner.

My bigger focus will be physical therapy; working to rewire and retrain lost muscle groups.  Strengthening my body will reap a host of benefits: recovering degraded function, compensating for lost muscles, or just preventing atrophy of my still-healthy pieces!

Everything I do must focus on is preparation for the best and worst possible outcomes: preparing my body, our family, and my mind for the day we find a cure for my MS just as I prepare for the persistent and worsening conditions I am facing.  Starting the beginning of January, I will take time off from work.  As of now I have no idea how long I will stay out on short term disability.  This is the third interruption to my professional careers.  Fortunately, as this round is more of a ‘controlled crash’ scenario, I start out in the best position to remain focused on our fight. 

2016 will surely be a year unlike any before.  I’ll avoid clichés about reminiscences or resolutions.  Instead, I’ll look to when I realize my satisfaction; when I update all my friends with a glorious boom of “2016 was a year unlike any before.  Thank you all for helping us achieve so much!”

One final note:
2015 was a year unlike any before.  Thank you all for helping us achieve so much!  I think Brie and I have reached out to everyone with our 2015 thank you card.  If it didn’t get it to you, something got mixed up somewhere.  Please let me know and I’ll fix it ASAP.  We are so truly grateful for what you all have done for me, as well as everyone fighting 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!

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

1Blehm, E 2009, The Only Thing Worth Dying For (P.S.), Kindle Edition, accessed 14 December 2015 from Amazon.com. 

Thursday, October 29, 2015

Bike MS 2015 – Sometimes I Win

For the last 16 years, my fight with Multiple Sclerosis has been a progression anyone familiar with this disease could expect: relentless rounds of pain, setbacks, and increasing debilitation.  Loss has become a fact of life.  Realization of that constant loss can be enough to break any person’s confidence and will, tapping all strength remaining.  As I face losing more and more, support from my friends and family is often my only saving grace.
But sometimes I win.

Even before I started to ponder how I’d close out this Bike MS season, I noticed some wins.  During dark rounds of loss, small wins overshadow everything else.  They are my own little Cinderella Stories, pounding a relentless theme over and over: Never Stop… Never Quit…

This is a story about those wins.  Let’s start at the end.

We Raised a Lot Of Money
For 2015 Bike MS fundraising, Team Amulet set an all-time record by raising $102,543 in support of the National MS Society’s dedication towards achieving a world free of MS.  For her part, Eleanor raised $62,422.  Brie and I proudly support our daughter’s desire to, in her own eloquent words, “break that spell.”

Along with many other valuable efforts, these dollars will help fund research.  For me, research holds the key to breaking that spell of pain, setback, and debilitation.  Until that day arrives, I will continue to fight and relish every win.

Our Fight Inspired My Words
In April 2010, I submitted my first blog to the Veterans Administration’s Multiple Sclerosis Centers of Excellence.  Writing, a hobby for many years, is my way to have a strong voice when I share my message in this fight.  This year, I realized it is a passion.  I always look towards drafting that next blog story, curious of what I may think and write.  In rare moments of free time, I’m also working on writing several fictional stories. 

All the while, final preparations for my first publication are underway.  My MS and E is a children’s picture story that depicts the relationship Eleanor and I share, because of my MS but also in spite of it.  It is written with the spirit of our mantra of Never Stop… Never Quit…  Not only do I get to tell stories, but 100% of the proceeds I earn from this adventure will directly support our fight!

I’ve Overshadowed Increasing Debilitation
After an extensive progress evaluation with the Department of Veterans Affairs I am now, mathematically, about three times more disabled than when I was last evaluated in 2000.  The consult of how easy I can increase my benefit rating another 30-40% wasn’t as comforting as I am sure it was intended. 

My 2-year clinical trial is drawing to a close and I again face my doctors’ uncomfortable resolutions that “when the trial completes, we’ll try something.”  I’ll surely do whatever is needed, though my track record on tolerating new treatments has been poor.  My physical therapist also shared that “we’ll try something” commitment, but offered little hope for muscles that just don’t have nerve signals in them anymore.  Last month, I arrived home loaded with new devices, more appointments, and a full schedule of physical therapies; all ventures in the hope is that something will stick. 

“Something” indeed stuck a week later when I moved the toes on my left foot.  We’re not running any marathons (yet) but, with a little prep and a lot of focus, I can wiggle my toes!  That control is a sign that there is still life, some remaining signals, and a hope for more wins to come.  Today was my first, of many more to come, consult with the VA’s Complex Brae Clinic.  Something is out there, waiting for me to find it.

I’ve Experienced Searing Pain
Persevering through mobility and dexterity issues, I find myself desperately trying to maintain normal levels of activity.  Recently, while reaching into our oven to pull a tray from under the broiler, I immediately pulled my arm back.  That startled reflex was from searing pain in the tip of my finger, just barely unprotected by a towel.  I spent 20 minutes soaking and icing my finger in my attempt to arrest the pain, hoping the burn wasn’t too bad.  All the while, my face wore the widest grin in quite some time. 

I’ve inflicted a lot of damage to my right hand and fingers over 16 years, mainly because I don’t  pain or sensation.  My function is strong, there’s just little sensation.  Pain is a sign that there is still life; a hope for more to come after this win.

Never Stop… Never Quit…™
Retired Lieutenant General Robert Foley, West Point Class of 1963, sent me powerful words of support this year.
Keep fighting and keep writing. Your journey has created a legacy that will benefit others for years to come.
When a legend talks about creating of a legacy, I can’t hide my feeling of pride and hope for our fight.  Many years ago, it was his stories that became my inspiration (Prologue).  That inspiration became our mantra.  That mantra is now our brand!

Soon after fundraising ended, we held our first formal meeting. To further unite under the Never Stop… Never Quit…, sharing that common theme throughout our events.  This pending trademark will help us expand that legacy.

We Raised a Lot of Money
Our 2015 Bike MS fundraising officially in the books.  Incredible numbers define what this fight means to me.
$102,543 and $62,422

First look at our numbers elicits two incredible responses: “that is incredible” and “how much are we going to do next year?”  Such reactions epitomize our fight against MS.  The hard work and dedication that goes into rallying this level of support is incredible.  Such great efforts from Eleanor, Brie, and all of Team Amulet never cease to amaze me. 

Over 375 donors and supporters combined to help Ellie, Brie, and me reach our highest mark yet.  Support truly came from every imaginable source:
·         Family, friends, classmates, co-workers…all dear friends. 
·         Across 28 states and four continents.
·         Some, I have yet to meet (having read about my fight before reaching out to support). 
·         Others, I have been friends with all of my life! 
All, dear friends whom I owe so much for the chance I am given.  Just as inspiring are the efforts from all teams, participants, and countless event supporters, helping raise $762,321 this year alone. 

Every single effort made a difference.  You all made impact with dollars, support of our many events, needed reassurance, and motivation to keep fighting.  These dollars will help fund research needed to save my life, but the final thought still prevails…next year.  We have come so far but we are not there, YET.

I reach out often, through every available venues, and ask for a lot.  You answered; your donations and support went beyond my wildest imagination; your generosity is a big part of why I still have a chance! 

So I will spend some time reaching out again, through every available venue.  This is time to share my thanks and describe what your support means for my family and me.  Before I had to face my MS, I was a proud, strong, confident man.  Now, as a face some of my darkest days yet, I am a proud, strong, confident man who continues to reach higher-than-ever levels.  Our fight, our brand, and all of our wins will truly create a legacy that will benefit others for years to come. 

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!

I owe this all to you.
Thank you for your support!

Never Stop…Never Quit…™

Kevin Byrne - Portland, OR

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...

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