Want To

2014’s BikeMS is just two days away; everything is coming together for Team Amulet!  33 team riders are preparing.  Out of town teammates have started to arrive while locals are putting final touches on their bikes, gear, and packing lists.  Tomorrow, we will begin to assemble down in Monmouth, OR to join with the MS Society staff and hundreds of other riders.  From that point until Sunday afternoon our only focus will be to ride, rest, and celebrate our collective efforts to make multiple sclerosis a distant memory!

My 32 teammates were feverishly preparing while I spent the early morning reading. 

My source of intrigue was an academic paper, written in 1990 by John C. Bahnsen and Robert W. Cone, titled “Defining the American Warrior Leader” (Parameters, Fall 1990).  What does a paper written for the U.S. Army War College have to do with BikeMS?  Everything.

My feverish preparation was a reminder of why I ride. 

Let me explain. 

25 years ago I was a plebe at West Point.  During the summer of 1989, my classmates and I were new cadets attending “Beast Barracks”.  Beast was Army basic training, total West Point immersion, and college freshman orientation all rolled up together.  Overwhelmed is an understatement to describe how I felt!  I was one of over 1,300 plebes just trying to keep our heads above water.  Our greatest strength often came in the form of Old Grads, our alumni.  These grads survived Beast, went on to graduate, and served as officers in our military.  They often led our nation’s soldiers in combat, some fighting the toughest battles under the most demanding conditions.  It was lessons they learned at West Point that helped shape them into the leaders our nation needed them to be.  Upon calling, they returned to West Point for the purpose of passing forward those lessons and their wisdom, just as they were taught years prior.

One of my teachers in July of that year was John C. Bahnsen.

Brigadier General John C. Bahnsen (Retired), West Point Class of 1956, shared with us his ethos of “Want To”.  It is his summary of the mental readiness needed to generate inspiring leadership.  In a fight, you don’t have time to develop “Want To”, nor is there time to instill it in others.  “Want To” has to be part of your moral character.  You must be willing to maintain complete perseverance, endure challenging setbacks, and bypass more glamorous qualities.  Only then can you “compose the total makeup of the American warrior leader” that General Bahnsen and Captain Robert W. Cone (General, Retired), Class of 1979, helped define in their paper.  16 years have passed since I first read this paper, an assignment during my own Army training.  “Want To” and the American Warrior Leader are interchangeable echoes of the same message.

I only offer a taste of what General Bahnsen’s description of “Want To” was.  I would never even consider trying to replicate that message.  General Bahnsen and Captain Cone offer more clarity in their paper, but the message still escapes direct translation.  When General Bahnsen spoke to our class about the spirit, character and obligations that an officer has in our Army his intention was never for us to memorize a definition of “Want To”.  He wanted us to learn and develop our own “traits of the ideal American warrior”.

I’m 14-years separated from the US Army, medically retired after my diagnosis with Multiple Sclerosis.  What remains clear, more than the ribbons, awards, and collected memorabilia I have I storage, are the lessons I learned from thousands of soldiers I served with throughout my career.  “Want To” may be the greatest lesson of them all.

Today, after a most difficult winter, the mental readiness and inspiring leadership aspects in General Bahnsen and Captain Cone’s definition of a “warrior leader'” reign true more than ever for me.  The message was never about winning… that’s the end objective.  The message is about having the “Want To” needed to do absolutely everything that’s required before we win; to endure and persevere in the face of unyielding opposition.  The message is about truly living my mantra of Never Stop… Never Quit…

I sat in the hospital yesterday, undergoing several examinations for my latest round MS issues and reminiscing on General Bahnsen’s “Want To” speech during plebe summer.  I reached out and chatted online with several of my classmates, hoping their memories would spark more clarity and detail on the event.  None of us seemed to memorize the definition of “Want To”, but I've known these men and women for 25 years now.  I have seen them demonstrate their own unique traits of that ideal American warrior.   Just like in their examples, I realize that “Want To” remains ingrained in my spirit. 

I've experienced many challenging setbacks in my fight with MS, and I will assuredly endure more.  My willingness to maintain complete perseverance in this fight is the reason I will ride with Team Amulet again this weekend.  I’ll ride Saturday and Sunday, celebrating our collective efforts to make multiple sclerosis a distant memory.  Monday morning I’ll be back at the hospital for more testing to try and gain clarity of my new issues, hoping to halt or lessen the damage.

Riding will be my leadership and motivation, strengthening my own body and encouraging others to join us.  My stories will allow me to advocate for all of us fighting this disease, spreading awareness and putting a face on the fight with MS.  My fundraising efforts will help support the research needed to defeat MS and to help treat those like me, who are suffering from the debilitating effects.

Winning is the end objective.  My “Want To” is for the fight.

It will never stop….nor will we

It will never quit….nor will we

This is why we ride

Kevin Byrne - Portland, OR

neverstopneverquit.com

Foolish Miracles

WARNING: your brain may start to hurt from the blizzard of random thoughts

“You gotta believe in foolish miracles”

Rarely will one thought, one phrase, or one random line from a song remain so relevant throughout the many stages of a man’s life.  Ozzy Osbourne made that immediate impression on me with his ‘81 solo album and one line in the song "I Don't Know".  After playing it over and over again, I finally wore out my 8-track and had to get the vinyl.  I eventually broke down and bought the tape, the CD, then ‘finally’ a digital re-mastered file.  I've bought the album 5x over but it’s worth it just to hear that sweet reminder.

I've always believed in foolish miracles, echoing that belief in my graduations from high school and West Point.

I continued to remind myself to believe throughout various stages of my life and career.  The mantra still reigns true today, in my ongoing battles with Multiple Sclerosis.  Continuing to remind myself that I have to believe is sometimes the only way to face the unknown and all of its opportunities, challenges, dangers, and potential.  33 years later, I still play that song often to energize and motivate my spirit to drive on.

Music has always been a reminder for me; an inspiration when I need that extra motivation.  Stories, flashbacks, and lessons learned flood my mind as soon as I start playing tracks.  That’s perfect for me in the gym or riding on the road.

My need for motivation is paramount these days.  It’s summertime and the push to get my legs strong is on again.  There always seems to be a reason why the training push is tough, coming out of winters peppered with surgeries, broken bones, and other various MS hospitalizations.  The ‘themes’ this year are my Secondary Progressive MS diagnosis and clinical trial enrollment; the effects of my MS were significant enough to revamp my whole treatment strategy.  My body took a beating this winter but I've got to believe.

My training started in the gym, on the elliptical and stationary recumbent bike.  15 minutes was where I began to build my strength and endurance, upping the resistance and extending the workout as I improved.  20, 30, 45, finally 60 minutes in the gym.  For that I need motivation.  16 songs is a good workout for me in the morning.  16 songs create a one-hour stretch that helps the time go by easier when I crank up the level.

Every song has a memory, every song has a story, and every song is a reason to keep pushing.  Your brain may start to hurt from the blizzard of random thoughts, but at least you get to step away from this after a while!  Let me take you through my songs and thoughts on today’s 1-hour workout:

• "The Man Without Fear" Drowning Pool f/ Rob Zombie
I like music, all kinds of music.  Ever since I was a kid, though, my first choice has been hard rock and heavy metal.  Nothing motivates quite like "The Man Without Fear" piercing through your headphones.  Everything else fades as my thoughts focus on what I am doing right now.  Like a 10-year old boy in a comic book store I slip into character as my hero.  For now, all I can see is overcoming every limitation MS places on me.  I AM the man without fear.  This is all that I want to be, and the reason I am training hard again.

• “Paranoid” Black Sabbath
Hard rock power ballads are great, but in the gym my energy comes from the speed, driving guitar, and powerful vocals.  Ozzy’s been doing that for me for as long as I can remember.  Working out to “Paranoid” brings back some of the earliest memories I have.  It has always been satisfying to listen to this song as I keep on pushing harder, saying to myself “at least I’m not that bad!”

• “Intergalactic” The Beastie Boys
They’re not hard rock, but they are still an old school favorite.  I have 27 versions of this song; a lot of time passes during the song planning the remix I want to hear on the next workout (maybe the ‘Fuzzy Logic Remix’).  Images from this song just swarm my mind, from chuckles over dining at the “Galactic Chicken” while on vacation in Chile (¡intergalactic-pollotary, pollotary-intergalactic!) to the grim reminder that it hasn’t only been my MS that wiped the innocent days of the kids from my generation (when ‘Ad-Rock’ died of cancer in 2012).

• “Whiplash” Metallica
There are dozens of songs from Metallica that I could add on any given workout, but for today I chose their first album.  I’m not sure my body could survive a mosh pit these days!  With this song, I can relive my hard core days growing up tough-as-nails in the Bronx (this is the point that I have to admit that my ‘hard core’ days were spent attending an all-boys’ Catholic high school; it’s the thought that counts).

• “It Takes Two” Rob Base & DJ E-Z Rock
It wasn't until after high school that rap and hip-hop became part of my music palette.  “It Takes Two” was probably the first so it brings back the most memories of club dancing and parties the few times we actually did get away from West Point for a day or two.  My biggest regret: I never did learn how to do that cool ‘grab one foot and jump through with your other leg’ thing…

• “Rockstar” Nickleback
I’m a middle-aged man in the gym trying to keep in shape and fight the effects of….everything (MS, getting older, inactivity).  How can I not love a song about a man reflecting how he wants nothing else but to be a rockstar?  Apropos.

• “Manamanah” The  Muppets
Because, really, who cannot read the line above and not start singing in your head (or aloud)!  Manamanah, doo dooo de do do…

• “King of Rock” Run DMC
When I started to listen to rap, I quickly went old school.  I guess that makes me an old soul!  It’s been 25 years since I left the Bronx but Run DMC’s energy and music still remind me of growing up the 80’s in the Boogeydown.  I’m halfway through my workout now.  The words in the song and the pace readout on my bike are the only things on my mind.

• “The KB Style” Minister KB
I didn't get the nickname KB until after my first year in college.  I guess when all your other West Point buddies have nicknames like “Dougie”, “Ho Ho”, and “Bo” they couldn't really associate themselves with just a “Kevin” or “Kev”.  So, they rebranded me as KB.  The fun part about the name is that you can add KB to just about any song (it really annoys my wife when I do that!), so when the song IS about KB you have to love it!

• “We Will Rock You” Five & Queen
Some songs have so many stories that you need to find as many versions as you can.  The rock and the funk of this one make it a favorite to get me over that ‘no man’s land’ where I just want the workout to end before my leg quits.  It helps.

• “Copacabana” Barry Manilow
My heart’s pumping hard at this point so my singing has long tapered off.  When Barry Manilow is on a mix with Metallica and Run DMC, most people will shake their heads in confusion.  Mine is just bopping along to the ‘Copa, Copacabana….’.

• “Whiskey in the Jar” Metallica
Take an old Irish folk song and add Metallica to it; my ability to sing along is revived again in the gym!

• “On Brave Old Army Team” USMA Glee Club
My Army days are long passed but not my Army spirit!  I got more than a few strange looks during my chorus of “Rah! Rah! Rah! Boom!”

• ”Boom Shake the Room” DJ Jazzy Jeff & The Fresh Prince
My mind is flooded with a bunch of stories and flashbacks when this comes on.  Old school rap (that I can sing all the words to).  Old school TV and movies that I can watch and quote whenever they are on TV; that’s the perfect mix as a finish line burst of energy starts to build in my legs.

• ”Live, Laugh, Love” Clay Walker
Live Well, Laugh Often, Love Much.  It’s a great message, no matter what the reason is for sharing it may be.  Clay Walker is two years older than me and has been battling MS for two year longer than I have.  I see what he continues to do while fighting his MS; it is one of the many stories that give me hope.  Every day I am at work, I look over at a framed picture my wife gave me.  We’re at the National MS Society’s annual conference in Chicago a few years ago, arm in arm, looking into each other’s eyes, Clay Walker on stage in the background.  One the picture frame is the reminder: Live Laugh Love.  There are a lot of MS reminders that I get every day.  Most are not welcome; this one makes me smile.

• “All I Do Is Win” DJ Khaled
I guess that until “Never Stop…Never Quit...” is made into a motivational anthem I will just have to cross the finish line to this…with my hands in the air.

By the end of an hour, my body and my brain are exhausted.  Time to cool down with Ozzy & “I Don’t Know”.  I never even got around to Areosmith, Coolio, Anthrax, Toby Keith, and so many others.  Good thing I am back in the gym tomorrow!

There are times recently where it feels that all I have are foolish miracles.  I remind myself how they’ve worked out for me so well in the past, so why not again?  Even when the music stops, the foolish miracles continue to flood my mind…  Active.  Healthy.  Running.  Riding.  Thriving.  Family.  Friends.  Brie.  Eleanor.  Living.  Growing Old.  Never Stopping.  Never Quitting.

My first foolish miracle for this summer was to revisit Angel’s Rest.  It’s the gorgeous view of the Columbia Gorge that I will always think of when I need a strong target to train for.  I believed, and I realized that miracle!  Read about my great trip up Angel’s Rest last week.

It’s the end of July; I have one more week before I hit the road for BikeMS.

Yet again….I've got to believe in foolish miracles!

Kevin Byrne - Portland, OR

neverstopneverquit.com

Angel’s Rest revisited

I visited my old friend, Angel’s Rest, again last weekend.  No longer was this a training hike, no longer rehab, Angel’s Rest was now needed therapy for a damaged body and man looking to fight back.

It had been almost 2½ years since my last hike, the first dating back to 2011.  I hiked this trail often while preparing to climb Mt. Rainier.  A moderate climb of 1,450’ in 2.4 miles, back then it took me 50 minutes to make it up to the plateau overlooking the Columbia River and descend.  With a 50# pack on my bag, or my daughter in a carrier, Angel’s Rest was a great kick-start to tougher climbs ahead.  My strength, balance, and coordination were at a peak for my June climb of Rainier that year, though balance issues are always a concern with me.  Those balance issues resurfaced while on Rainier, then again later in the month with a fall that broke my lower leg.

Injury, MS-issues, hospitalizations, and recovery made for a long winter.  In February of 2012, I shared my triumphant return to Angel’s Rest.  This time the hike was slower (1 hour and 50 minutes, sans pack), but my resolve to Never Stop… Never Quit… was stronger than ever.  I left the last story with this challenge:

My balance may continue to get worse, but not without one hell of a fight from me!

Good luck on this fight, MS.  You’ll need it!

My MS had quite a bit of luck that winter… and the next.  Trying to hike wasn’t even a consideration; the priorities instead were on walking, speaking, and using my hand and arm.  Everyday tasks became difficult, but I never could shake off that desire to stand atop Angel’s Rest and overlook the Gorge once again.  I tried in June of last year.  “How hard could it really be?”  That was my thought as Brie and I started out.  Not even a ½ mile in and my MS answered that question; my body would go no further.  Angel’s Rest would not signal ‘my return’.  Not yet, at least.

Finally, after far too long, I once again stood on the overlook of Angel’s Rest!  How I got there this time is a completely different story.  My struggle used to be a tale of getting knocked down, fighting to get back up, and defiantly standing strong in the face of MS.  I can’t do that anymore.  With my family and friends, however, I learned new ways to get back up and fight.  Together we can still defiantly stand strong.

There is a constant focus to find the needed formulae of exercise, stretching, diet, and rest.  It is a challenge to understand and predict every environmental/mental/physical/social factor that will have an impact on my MS.  Regardless of how strong my body is there are times when my legs and arm just don’t work.  MS is not muscular, it’s neurologic.  Conditioning my muscles when my nerves won’t control them is always a challenge.  So I spend time in the gym training in ways that I can, using elliptical cross-trainers and recumbent stationary bikes.  Balance and coordination are less of a concern with these machines; they give my body the chance to safely gain the strength needed.

Even still, balance and coordination would be needed to hike.  The only way I could fully train for Angel’s Rest, and qualify my ability to hike, was by actually hiking.  I started small… very small… 16 lb. Jack Russell small.  Neighborhood walks with Monte! grew in duration and distance.  Quickly, I graduated to fast-paced treks along the Portland waterfront.  The 50’ elevation gains across the bridges were more than enough to challenge me for a while.  I stepped up to my first hike a few months ago: Multnomah Falls and her 700’ elevation gain.  When I finally reached the point where I could hike that paved trail two times in succession, I was ready to battle Angel’s Rest!

The week before the hike, Brie and I were discussing how I felt ready for Angel’s Rest.  I asked her if she thought I was physically improving or just better at handling my disability.  Before she replied I already knew the answer.  The fact is that my disability has progressed; I am just better at working with it now.  Managing and understanding environmental/mental/physical/social factors are as essential in managing my MS as exercise, stretching, diet, and rest.  As any world-class athlete will agree, these are neither new discoveries nor are they unique to MS.  It took a while to sink in, but this understanding has opened up so many doors for me in my new world.

I woke up on Saturday unsure of what I could take on.  As months of physical and mental preparation were over, it was now up to how I felt.  OK.  On my tracking scale, that’s a 4.  Not as good as Good (5) but better than Better (3).  It’s part of my quasi-scientific self-evaluations every day (see Tracking my MS).  I was hoping for more function in my leg, but that was what I had so there was no sense fretting over it!

Sue, Peter, and Mark joined me for the hike.  Starting out early in the morning, two things became clear as we departed the trailhead that morning:

• On the trail, there was no hiding my disability.  Early into the hike, as my leg and arm struggled to maintain coordination and balance, every step was a reminder to me that this is not as easy as it was in the past.  I felt and looked….well, like a disabled man trying to hike a trail!  I should be used to it by now but there is still a part of me that tries to put off ‘looking disabled’ as much as I can in my daily life.  I’m sure that the charade plays out better in my mind then in reality most times.  At Angel’s Rest, however, I was keenly aware that every slow step looked as difficult as it felt.  That’s just reality.  I convinced myself to get over trying to hide the obvious and focus on what I am able to accomplish and improve!
• There is no way I can do this alone.  Past hiking in the Gorge was a peaceful time for me to be alone with my thoughts and my music.  That’s not the case anymore.  I needed Sue, Peter, and Mark there with me.  Three friends from Portland who came to hike for no other reason than to support me.  Often they were there for just motivation, conversation, great pictures or camaraderie.  Other times it was to help lift my numb foot climbing up the rock shelf, grab onto me when I stumbled, lift me up when I fell, or wait every time my body needed to pause before working again.
  

So I put my trust in my friends and once again enjoyed my favorite view in the Gorge!  Two hours into the hike we finally reached the Angel’s Rest overlook.  Even before our much needed high-fives, photo ops, and social media updates, we paused to take in the view.  It was worth every struggle to have those moments on the Rest with my friends.  Reflecting on the gravity of the moment, I expressed my thanks and love to these three heroes.  With the understanding that my MS has worsened in the last few years, I had to admit there is a chance this may be the last season I am able to do this.  With a motivational “phooey,” Sue just talked about how she was looking forward to hiking next year!  Rather than letting my emotion overtake me, I just stopped talking….

After a short rest, we headed back down.  This is usually the faster direction on a trail but downhill mixes poorly with my balance and coordination.  Finally, 2½ hours later, we arrived at the trailhead once again!  Angel’s Rest has gone from a 50-minute ruck carrying training hike to a 4½ hour struggle with my body.  My balance has indeed continued to worsen… but not without one hell of a fight from me!  I’m better at falling these days; I’ve had a lot of practice.  For the day I was only unable to ‘gracefully’ convert one stumble into an awkward abrupt sit-down, opting instead for a downhill fall.  Even then, I had the wherewithal to pull back my arms, protect my wrists, and tuck my chin in so that I landed on the softest spot possible….my head!  Three days later, my bruises are just coming into full bloom; well-earned reminders of what I accomplished.

I spent the last 2½ years hoping to stand atop Angel’s Rest again someday.  It was always one of my goals as I tried to treat and arrest further debilitation, regain lost functions, and learns ways to offset the existing damage of my MS.  Saturday’s hike was one of the most difficult events I have ever faced in this new world of mine.  It was, to date, my greatest victory.  All the time, my mind was repeatedly flooded with the same thoughts:

• How can I improve my body to hike stronger, faster, and safer next year?
  With the incredible support I have from my family and friends, finding new ways should never be a problem…
• What’s next to accomplish?
  I will answer that one next weekend on the roads for BikeMS with Team Amulet!  

It will never stop...nor will we

It will never quit...nor will we

This is why we hike!

This is why we ride!

This is why we FIGHT!

embk.teamamulet.com

Kevin Byrne - Portland, OR

neverstopneverquit.com

Thank you, Peter!
Thank you, Mark!
Thank you, Sue!

My heroes…

Living the Dream!

“Hey, Kevin!  How’s everything going?”

                ‘Living the dream!’

It started as a quick line I’d shoot back to any daily greeting.  Everyone got the same ‘living the dream’ in response; nobody was safe.  I said it for no reason other than because it was a quick, snappy response and it was funny (at least to me).  One day not too long ago, however, something happened.  ‘Living the dream’ became something more. 

I meant it.

I’m living the dream every day.  Not intended to be a quixotic boast, ‘living the dream’ is my personal reminder.  Every time I say it, there is a smile on my face as I whisper the reminder “every day is better and better!”  I’m a 42-year old man with Multiple Sclerosis.  According to most odds, I should never again be strong, healthy, and full of life.  Statically, every day should be further degradation and decline as I continue to become more and more disabled.

That won’t happen; my dream doesn’t end up that way.  In my dream, I stand strong with the force of the world.  I stand with the hundreds of friends who support us every year, joined by thousands more new friends this message is passed on to.  In my dream, the support of our fight gets bigger and bigger, grows louder and louder, and reaches further and further until we win.

This is how I will stand strong with the voice of the world:

• Please reach out to me: KevJByrne@gmail.com.  I need to hear voices of support.  In my dream, the fight with MS around the world becomes my fight and my fight with MS becomes yours.
• Please support my fight: www.nationalmssociety.org/goto/EMBK.  My family fights here in Oregon under my daughter’s name.  Hundreds of supporters joined us last year to put Eleanor at the top of the fundraising list.  In my dream, our supporters and donors grow beyond imagination.  They donate, helping us raise the money needed to improve the quality of life for people affected by MS and ensure that our daughter’s generation can live in a world free of MS.
• Please pass this on.  In my dream, your friends and their friends (and their friends and beyond) become that force of the world I stand with.  Every person who reads this reaches out to me, supports my fight, and passes my message along to start the cycle again.  There is no way we can do this alone.  In my dream, our BikeMS thank you cards are on countless refrigerators around the nation and across the globe.

That’s my dream today.  My dream starts with you and passes on to your friends' friends' friends...   Strengthened by you, I stand strong with the voice of the world.

I don't want Eleanor to continue to fundraise and fight for me.  Eleanor already knows too much about Multiple Sclerosis and what is does to daddy.  In my dream, Ellie’s name and face are the story of how we defeated MS and made me strong.

It has been a few long years since my body was strong; a long time since everything was easier.  I was diagnosed with MS in 1999 and it was (mostly) under control until just a few years ago.  I was living my life to the fullest and felt like the poster-child for victory.  There were a few years of hard fought struggles, but my MS couldn’t keep me down.  No way was MS was going to defeat me. 

When you’re a West Point graduate, former Air Cavalry commander and AH-64 Apache Top Gun pilot, things like MS don’t stop you in your tracks!  That wasn’t the storybook ending I expected, so I refused to let it happen.  With incredible family and friends sharing a wonderful life with me, my goals focused on paying forward, like those who helped me, for so many others fighting this disease.

What changed?  My MS has conducted a relentless assault on my body.  Since 2011, I have undergone a mind-boggling barrage of hospitalizations, infections, ailments and treatments.  My condition is now classified as Secondary Progressive MS; the disease now progress more steadily without any noted relapses, just a continual decline.  There are currently no approved treatments available.

Except for that, nothing else changed.  My beautiful wife, daughter, family and friends continue to rally and support me.  Try as it might, MS still can’t keep me down.  Fighting back is the only option.  All days are harder than they used to be, some are worse than others, but I refuse to stop pushing.  Some days I gain ground in my fight and work toward my next victory.  Other days I lose ground: unable to run, walk, talk clearly, or even lift my arms to drink a cup of water.  But every day I live.  Every day I do my best to stand strong with that force of the world.  Every day I’m ‘living the dream’.

‘Living the dream’ is my safety net, my response to the world when the world doesn’t need to hear about how rough life is for me.  Instead, I want to tell the world that I am fighting.  I want the world to fight for me.  I want to fight for everyone who cannot.

Sometimes I reflect on what dream I’m living.

• A cure for me?  I cannot imagine being so bold yet; I am only 7 months into a 2-year clinical trial that hopes to stem the progression of my disease.  As a random, double-blind study, there is a 50:50 chance I am getting the medication.  If I am receiving it, the jury’s still out on whether it will even work.  
• A world free of MS?  That is still the vision but we’re not there.  New cases of multiple sclerosis are diagnosed daily, reminding us that we don’t yet have a cure.  The worsening of my own disability reminds me that challenges for those affected by MS are paramount every day.

Indeed, we are not there yet.  Today, my dream remains my 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!

Please support out fight!

Kevin Byrne - Portland, OR

neverstopneverquit.com

neverstopneverquit.blogspot.com
embk.teamamulet.com

Tracking my MS

April 8, 2013

That was the day something dawned on me: I’m slipping and my MS is getting worse.  What I couldn’t tell you was how it was getting worse, what was changing, or what I am doing to cause/prevent/manage those changes.  It was a little more than 5 month since my last release from the hospital.  Meningitis had been the latest twist; a reaction from my then-newest medication, Gilenya.  After 12 years of ‘stable’ treatment on Avonex I was riding the medication merry-go-round.  In two years I went from Avonex (leg infections), to Tysabri (anaphylactic shock), to Gilenya (meningitis), and finally Rebif.  My body was rejecting all medications available in the most imaginative ways possible!  Maybe I was still reeling from effects of the meningitis, maybe I was experiencing a new exacerbation, or maybe something else was going on.  Maybe was my new default diagnosis.  I had no control.

Everyone with MS has those moments when you feel you have no control in this at all.  I didn’t like that, nor did I tolerate it well (I never do).  I started to push back for answers.  In order to get answers I needed data to ask the right questions.  That was the path to control, so the first step was to collect data.  I have over 2,700 pages of medical history from the Army and the VA Hospital.  That’s a lot of medical testing, evaluations, treatments, prescriptions, summaries, and appointments.  Over 2,700 pages that were of zero value to me at the time.  I needed to know details, the smallest details of every day.

April 8, 2013 was Day #1.  I started tracking every aspect of my life.  Sleep, exercise, activities, and diet were all logged in detail.  Even mediations, treatments, and the weather were logged!  I graded myself every day with a subjective score, a comparison to a set point in time when I was “100%”.  On August 4, 2012 I rode strong with Team Amulet for BikeMS.  After recovery from my broken leg the year before, being able to ride 82 miles in 103⁰ heat was a signal that my body was back.  I had MS but I was strong; I was winning the fight!  Ever since, I have never felt as strong as I did that day….

So I started tracking; I continue tracking data every day.  There are good days and bad days, busy days and lazy days.  All the while I track all the details that I can.  As of July 6, 2014 I have collected 16,422 points of data and extrapolations.  I run these numbers through a few spreadsheet tables.  This is my source for analysis and hopefully a few answers.  With my MS, this new world of ‘maybe’ has a bit more statistical clarity.

The details, my details, are not as important to share as the themes.  What I have learned is that patterns and routines rule my days.  After 455 days I can find the repeated patterns that make for a 77% great day versus a 70% rough day.  That’s my playground, 70-77%.  I work to avoid the drastic swings and lows of recurring ailments, and to avoid the need for artificial highs of new medication treatments.  I’m always striving to break 80%; I even had an 85% one day (June 29, 2013: aah, that was a great day).  All the while I try and learn what will prevent the horrors of April 10, 2013 (55%).

MS is unpredictable.  It can be hard to say what causes a good day or a bad day.  What I am trying to do is take back some of the control.  The data gives me some clarity.  I can usually tell you what will make my day better or worse.  My goal is to find patterns that work and stick with them.  There are bad combinations of life that I’ve learned to avoid while always trying to replicate good ones, and maybe find something new. 

16,422 points have taught me so much about my body and my MS.  I am aware of the effect that many ‘factors’ have on my health, more than I have ever been before.  Some seem obvious, but soon after learning how proper diet and strong exercise were good for me I dove into cause-and-effect patterns that even make my neurologist say “Wow!” and press for more data.

It’s nice to have some control over my MS!

…besides, I think Brie finds it adorable being married to someone who strives to live the same schedule over and over (and over) again!

Kevin Byrne - Portland, OR

neverstopneverquit.com

Taking life back (Turn off the TV)!

I never considered myself to be an avid reader.  While talking through a list of books with a friend of mine, “how did you get through high school without reading that?” was the question she repeatedly posed.  My answer was always the same, “I didn’t have a need; I was really good at math.”  I never really enjoyed sitting down and reading a story until I was older, then quickly after that I couldn’t.  By the time this past January rolled around, it had been over 5 years since I was able to read anything at length.  With my MS, vision issues now prevent me from focusing on printed pages for anything but the shortest periods of time.  Glasses don’t work.  The issues with my eyes are ever-changing, even as I struggle through a single page.  Academic lessons and work-related books became an evil necessity, quickly struggled through then set aside.  There was nothing enjoyable about time spent reading a book.  If something hurts, don’t do it.  That made sense to me.  I stopped reading, instead relying on televisions and computer screens for my information, education and entertainment.  I grew to dread the occasional struggle with print.  A good story was something I actually missed, but as I said “If something hurts, don’t do it.”

That all changed in January.  A good friend, Shannon Polson, was celebrating the release of her book, North of Hope: A Daughter's Arctic Journey.  It’s her memoir recalling the loss of her father and stepmom while retracing the unfinished journey through the Alaskan Arctic where they were attacked and killed by a bear (http://aborderlife.com/northofhope).  Shannon and I served together as AH-64 attack helicopter platoon leaders in the Army back in the early 90s.  She quickly earned my respect and admiration; I figured if there was ever a reason to learn how to do something again, this was it!

I pride myself on being “current” with many topics, especially technology, but the improvements with digital books have been phenomenal.  Just a few years ago, the Kindle® reading apps couldn’t sooth my vision issues.  Now, I can tweak the colors, contrast and font size enough that reading with the app on my iPad® is actually soothing!  I’m sure that the ongoing changes with my MS may have accidentally led to improvements as well.  Regardless of the reason, I’ll take it.

Since January, my motto has been to “turn off the TV, step away from the computer, and pick up an iPad” (hopefully, marketing royalties will soon come in from my nifty slogan).  I made some caveats on what I would read with my new 2014 eyes: no military/business books (way too many read already) & none I've read before (or saw the movie version).

I started out with a few Science Fiction adventure tales, just to retrain my brain.  Then, some classics: The Count of Monte Cristo and Great Expectations (no judgment for never reading them, I was really good at math).  I finally sat down to enjoy North of Hope.  It is a powerful, comforting story.  I have two friends who, like me, lost their dad violently far too early (if there is ever a good time to die violently).  Much of the fears, anger, confusion, and growth she shared mirror the journey I have been on for 26 years now.  North of Hope was the catalyst for not only the healing and training of my vision but for a refreshed outlook on other personal loss.

Six months and 32 books later, I don’t know if I will ever be able to fully put into words what Shannon’s kick start did for me.  My MS has taken so much from my life; so many activities and hobbies of my past are nothing but distant memories now.  The ability to take something back is the most powerful tool I could ask for.  If I can take this back, what’s next?

I’ll answer that question when I climb Angel’s Rest in August…

Kevin Byrne - Portland, OR

neverstopneverquit.com