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

Never Stop...Never Quit... motivational t-shirt

Show everyone that you will Never Stop…Never Quit…

Never Stop…Never Quit…
This is the theme and motivational mantra for Brie and Kevin in their fight against Multiple Sclerosis; a lesson first learned more than 21 years ago that still reigns true today: Read the story here

Read more and support our fight: neverstopneverquit.com

Order your shirts today for this first-run.
$25 each.  All proceeds go towards our fight against MS.

This is a limited edition release.  Local order and delivery only.  Orders will be ready the week of June 16th.
Send us an email (KevJByrne@gmail.com) or order in person.  We’ll meet up with you here in Portland.  Meeting location of choice is, of course, at Journeys (7771 SW Capitol Highway, In the heart of Multnomah Village)!

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I didn’t know how to be disabled

There’s a unique sense of pride when you encounter someone with whom you share a bond.  It’s like that subtle gesture you give and receive as you ride past another motorcycle.  A relaxed wave, with your arm hanging down, that told the whole story:

 ‘sup

Nice bike!

Thanks!

Enjoy your ride, I’m enjoying mine!

Every bond has that special greeting, that acknowledgement to the other that you “get it” and share the same passion.  You compare your cars, sports, computers, or whatever other interests you may share.  Sometimes you ask questions to size up the competition or maybe just revel in the jealousy of others (or end up simmering in your own jealousy). 

There are other times when just a wave won’t do and you simply must tell stories.   I love to tell stories.  Whether it’s with other helicopter pilots or displaced New Yorkers, I rarely pass up an opportunity to tell stores. 

My MS world is no different.  I like to tell stories.  I like to talk about my challenges and overcoming the odds.  I always relate to the big victory.   The other day, my camaraderie was displayed while hobbling past a man close to my age.  The arm gripping his cane told the whole story:

‘sup

Nice cane!

It was a nicer model than my cane.  I involuntarily acknowledged him but quickly pulled back; it just felt uncomfortable.  Do you recognize or acknowledge someone else’s disability?  I don’t know.

The first 14 years of my fight with MS were relatively easy.  Either I didn't “look disabled” or, if I did at the time, l was sick or injured.  Sick or injured, at least to me, implies a temporary state.  I was sick, but I was in the hospital or on medications; I would get better.  I was injured, but my leg was in a temporary cast or I wore an eye patch for a while: I would get better.  I often separated myself from the “disabled” term and the focus (with stories and MS fundraising) was on overcoming the effects of my MS and paying everyone’s support forward.  In my 15^th year of fighting the hardest thing for me to lose ended up being punctuation.  Without the comfort of hiding behind quotation marks, I am finally working on learning what it means to be disabled.

Last month I was featured on a local news channel’s health report (KPTV, Fox 12 Oregon).  It was an informative piece about the clinical trial I am participating in.  It’s for patients with Secondary Progressive MS.  I received nothing but accolades from everyone (friends, family, even strangers who recognized me!) but when I saw that video clip I didn't see any reason to be happy.  What I saw was a body that was breaking down.  Tell-tale signs of limping, slurring, and stumbling were not starting to become visible, they were on display.  My concern was that everyone was going to see the clip and think I’m like that all the time.

Over the course of the next few weeks, my condition worsened.  I could feel myself degrading daily; I could almost mark the changes from one day to the next.  Secondary Progressive MS is when the disease will begin to progress more steadily without any specific noted relapses.  No breaks, just continual decline.  “This is it” was my only logical conclusion as I witnessed that decline first hand.  There are a lot of things that go through your mind when you experience what you see as a pre-cursor to your own demise.  All of the facts you know about MS, and every example of the progression you have seen in the past, lead to the same grim outcome.  I was no different after all.  I was becoming part of the group with others who show their disabilities.

I finally stopped separating myself from the disabled term and started sharing my developing disabilities with others.  Only then did I finally understand my disease.  That was the point I started to listen to others, to realize their reactions to and interactions with me, and to see what everyone else around me has seen for quite some time.  My MS had not progressed or worsened in quite some time.  My symptoms have been this way for months, much longer in some cases.  The occasional comment of “you look like you are doing a lot better than the last time I saw you” was finally taken as a compliment, encouragement rather than pity.  There was no rapid degradation; all of those new symptoms were just a sudden onset of realization on my part. 

With my impressions reset, my health improved.  My energy level seemed to be restored, my workouts improved, and my mind was again at ease.  I no longer have to question myself as to what I’ll do if/when I become disabled, no more concerns about how I will handle that.  Apparently, I have been disabled for quite some time.  Go figure. 

I am disabled.  I’m more comfortable with that now.  This realization changes nothing externally, but my comfort level changes every image of where I am and understanding of what I need to do.  All my MS friends can translate this (comfort level = reduced stress = better days overall).

I’m still not quite sure what the proper greeting or protocol is when I pass another with whom I share this bond.  I suspect that time will help me understand the best thing to do.  Before I understood the subtle arm-hang when passing a fellow biker, I had to learn to ride.  Only then did I receive the greeting.  Eventually I learned to respond in-kind, later initiating the greeting and teaching the next generation of bikers the proper arm-hang.

There is a lot for me to learn and be comfortable with.  For now, I will have to stick with “nice cane!”

Kevin Byrne - Portland, OR

neverstopneverquit.com

Prologue

Prologue

When I finally pen the story of Never Stop…Never Quit… detailing my fight with, and victory over, multiple sclerosis, this will be the prologue.  All of my actions since that day have been rooted in those moments.

Kevin Byrne - Portland, OR

neverstopneverquit.com

**********

May, 1993.  West Point, New York.

It was a rare event: a lazy Saturday afternoon with nothing on the schedule.  I was a cadet at the United States Military Academy, preparing to graduate later in the month as a member of the Class of 1993.  As I stepped out of the barracks area on a sunny spring day, I paused to admire the view I had called home for the last four years.  Looking onto “The Plain,” a 12-acre parade field just past the statues of General Douglas MacArthur (Class of 1903) and Colonel Sylvanus Thayer (Class of 1808), I felt a familiar sense of awe, realizing I would soon join The Long Grey Line of so many graduates preceding me.

Just off to the side of Thayer Monument was a sightseeing tour group, a common springtime sight.  The Commandant of Cadets, Brigadier General Robert Foley (Class of 1963), was leading the group through a short history of the Academy they were visiting.  At the time, General Foley was one of three Medal of Honor recipients still serving on active duty, having earned the award for inspiring leadership while commanding his company during a fierce battle near Quan Dau Tieng, Republic of Vietnam, in 1966.  He described the tenets of dedication and leadership instilled into young cadets from the very start, and how their dedication consistently shines in generation after generation of military leaders coming out of West Point.  As part of this, he shared several poignant examples of Americans in combat, relentless onslaughts of overwhelming enemy forces collapsing onto weary bands of brave soldiers led by graduates of our alma mater. 

“They would never stop. They would never quit.”  

He repeated the phrase over and over as he shared examples of tactical, mental, and physical challenges many young graduates faced while leading soldiers in combat.

Needless to say, it was quite stirring. 

At times, “they would never stop…” referred unrelenting attacks of their enemy.  At other times, the young Army officers and soldiers they led earned the credit.  

Hearing this crystallized everything I had been taught over the past four years: the dedication and strength to continue the fight come from understanding your enemy’s intent.  If left on their course, the enemy would never stop and would never quit. If not repelled, they would drive through and defeat you, moving to attack again and continue their assault on another.  It was the duty of leaders to understand the drive of their enemy and to face them. 

Their enemy would never stop, nor could they.  

Their enemy would never quit, nor could they.  

They must fight until their enemy’s drive was defeated.

Fighting takes on countless forms.  Regardless of the uncertainty, leaders need to be prepared for whatever fight they may face.  General Foley told the group how cadets must always understand why they are there and what their training is preparing them for:

·                     Leading soldiers, keeping them safe, multiplying the power of our forces.

·                     Always training, always preparing.  Ensuring both soldiers and leaders are ready for the next fight.

·                     Caring for their soldiers and themselves: physically, mentally, and morally.  

These are the most valuable needs in every fight.

A few weeks later, I was one of 1,003 cadets who graduated in the spring of 1993.  On that spring afternoon, however, I felt as if General Foley was telling those stories in order to personally charge me to never stop and to never quit.

I never forgot his lesson.

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

neverstopneverquit.com

neverstopneverquit.blogspot.com

  

 

Never Stop... Never Quit... Reg. U.S. Pat. & Tm. Off.

(Edited. This poses been edited since its posting)

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2014 BikeMS - Oregon Willamette Valley

Welcome and Thank You to the our new title sponsor for Team Amulet

Ninkasi Brewing Company

How to Put Your Pants On

Putting on pants.  It’s a pretty easy concept that I’ve been doing for more than a few years.  Besides, if in doubt I can always fall back to my Army training and execute the maneuver in 6 basic steps.

Given:

• 1x pants, properly sized, cleaned and prepared for wearing.
• 1x person, properly cleaned and prepared to wear pants.
•  Refer to additional instructions for proper sizing, cleaning, preparing of pants and/or person.

Procedure

1. Using both hands, one hand per side of the top pant opening assembly, hold the pants out in front of you.
2. While standing on your left leg, lift your right foot 20” and insert into the right pant leg top opening.
3. Completely clear your right leg through the bottom opening of the right pant leg.
4. While standing on your right leg, lift your left foot 20” and insert into the left pant leg top opening.
5. Completely clear your left leg through the bottom opening of the left pant leg.
6. Raise top pant opening assembly and secure around waist, using buttons, clasps, belts, ties or any other approved method.

So simple even a freshly minted second lieutenant could do it with minimal supervision!  Not so simple when you have Multiple Sclerosis.  I can still size, clean and prepare (though my wife would argue with style choice).  My problem is often with standing on one leg or raising my foot 20”.  On some days that can be a herculean effort - more than once have I crashed head first into the dresser with my legs stuck halfway through step #5!  There has to be an easier and safer way.

There has to be an easier and safer way…. That should be my new mantra.  MS can make the simple things difficult and almost always makes the difficult things impossible.  My goal is often to figure out how to do what I need to do.  I make those assessments all day, every day.  My questions are basically the same:

  o What do I need to do?

  o What can I do?

  o Is there a gap between those two questions?

o   No – Sweet!

o   Yes – Now what?

I repeat this over and over as my day progresses.  The ‘now what’ question is the tricky one, often requiring a creative solution, stubborn perseverance, or that always fearful recognition that there is one more thing on the list of “things I can no longer do.” 

Since I wear pants almost every day, that’s as good a place as any to try and describe that daily struggle to you…

Good Days

I can plan on having a pretty good day when I get out of the shower, dry off, and easily hop into a pair of pants in a single, swift motion.  Although I usually have some indicators before that (how I feel in bed, waking up, at the gym, etc.), I’ll often hold judgment on the morning until ‘the pants’.  On a good day my muscles and nerves are in sync, allowing me to focus on the harder things.  When I get my pants on easily, I feel like I can conquer the world!  I share today’s accomplishment with my wife, she responds with a look that says, “I’m happy for you…but it’s only pants”.

Bad Days

On bad days, the warning bells toll loudly long before my pants come off their hangar.  Maybe I can’t raise my arm to shave or button my shirt.  I can dismiss these minor inconveniences in a nonchalant manner, going scruffy-faced that day or wearing a polo shirt.  I do those often enough when I feel well that I can disguise my issues during bad days.  Unfortunately, I have to wear pants!  On those days, when I just can’t raise my leg to dress myself, I admit defeat.  Those are the days where my heart breaks just a bit as I sit down to get dressed, stepping into my pants or lifting my leg and placing it through.  In the grand scheme, it isn’t really a big deal.  So what if I have to sit down while getting dressed?  I’m not the first one and won’t be the last one.  Heck, that’s the way some healthy people get dressed all the time so why is it a big deal for me?  It’s just what this all means.  Sitting down means that I can’t dress myself the way I have for the last 42 years, the way I want to dress myself.  It is times like this that I hate everything about MS.  My disease keeps me from doing the things that I want to do.

Every Other Day

Fortunately, the bad days are few in numbers, though the good days are still too few to define “normal”.  Most days swing wildly between the two; as I get dressed in the morning you can almost hear the circus music playing in the background.

• I’ll try the straight-approach.  Treat every day like it is going to be a good day and you may just convince yourself!  If that fails,
• Try lifting your leg again, and again, and again.  I’ll try the clean-and-jerk method.  If my leg feels like a 400# weight then maybe it needs to be treated like that.  Then I’ll try swinging the leg in, hoping for just enough momentum to get my foot over the waist and into the trouser leg.  These methods have a spotty record of success, sometimes it works but most of the time my leg falls back to the floor.  It’s often just a matter of doing it again and again until I can stick the landing.
• With MS my nervous system gets easily rattled and stressed.  When that happens there is no way I am going to successfully accomplish anything.  I may need a few seconds to relax everything, take a deep breath, and let my body reset itself.  I never knew what to expect if/when the day came that I needed to rest a bit in the middle of putting my pants on.  Often, I just need a moment and I’m ready to battle my pants again.
• “If at first you don’t succeed, try, try, try again.”  When W. E. Hickson coined that phrase in the 1800s I highly doubt that he was talking about putting on your pants.  For me it’s about more than pants as well.  There are days where my stubborn pride becomes the only reason I won’t sit on the edge and finish getting dresses.  The victory is exhilarating when I finally succeed in my appointed duties.  My frustration mounts when my attempt to put on my pants results in a big lump on my head as I come crashing down headfirst into the dresser.  I’m most haunted by the times I have to admit defeat and acknowledge I’m having a bad day.  “Stupid pants.”

Relatively speaking, my pants are a pretty good barometer for my disease.  Today was a good day – in my Army Aviation days today’s dressing was a straight-in approach.  I like those days.

I’m looking forward to putting my pants on tomorrow!

Kevin Byrne - Portland, OR

www.brieandkevin.com