Everything Changes

December is here and, yet again, it is time to embrace the new.  Another year of holiday cheer and celebration will roll into another year of unchartered territory.  The New Year always brings with it changes.  Resolutions for change and hope for that magical caveat to everything: better!  Perhaps you know what you need to do to make everything ‘better’.  You may look at eating healthier than last year or addresses your own special list of bad lifestyle habits (to do them less than last year or not at all).  Bad habits can be easy to find, often less easy to fix but the New Year is always that time to try.  Maybe that ‘better’ is improving on the good that you have already built in years’ past: spending more time with your loved ones, reading a bit more or working out more than you did last year.  Whatever the reason and whatever the change, the goals bear the same striking resemblance: to make the bad good, make the good better, make the better…….well, better yet.

My December usually rolls into unchartered territory just a little bit more than most people.  That January 1 change is preceded by my December 28 change.  My birthday.  Birthday resolutions and hope for change rival those of New Year’s.  Put them together and the inspiration for change can be quite exhausting!  Over the years I have embraced some of my biggest changes and improvements during the Holiday-Birthday-New Year time.  It’s always about discovering what I can do to make myself better.

This year is different…sort of.  This year is a time of change but the focus is less ‘what can I do for me’ and more about ‘what will happen to me’.  Allow me to backtrack a bit…

2012 into 2013

MS life is normally a marathon of perpetual ups and downs.  Recovering from the downs and spring-boarding into a new level of ups has become my pattern since I was diagnosed in 1999.  2013 started out with great plans for that next spring-board.  A tough October and November left me knocked down quite a bit; another round of infections and hospitalizations had me on that “Medication Merry-Go-Round” of trying to find the right combination (my MS friends know this joy all too well).  I was focused on the ‘better’ I would see in 2013.

For months I struggled to regain the strength, energy and control lost after my prior year’s bout.  I didn’t succeed.  The general consensus from my neurologists, both at the VA and through local hospital networks, was that my MS had transitioned from relapsing remitting (RRMS) to secondary progressive (SPMS).  I am an average statistic to the MS-community.  I was diagnosed with RRMS 14 years ago.  In a VA research paper, the prognosis trend showed “twenty-five years after the diagnosis of RRMS, 75 percent of patients will have converted to SPMS”(1).  The cause, exact prognosis and cure are still a mystery but statistically my trend is clear.  My disease modifying treatments options are minimal-to-none; my disability progression will likely be steady and unrelenting.  It’s hard to find the ‘better’ in this situation.

As we come to the end of the year my next path has taken shape.  After 14 years, I am no longer on any disease modifying medications.  I am enrolled in a Phase IIb clinical trial for the treatment of SPMS.  The goals of the treatment are “stabilization or improvement in a patient’s MS disability.”  For months, as I dove deeper into the details of this clinical trial, I was constantly reminded of the numerous caveats and disclaimers:

·         I am in a 2-year, randomized, double-blind trial.  There is a 50/50 chance of receiving the treatment or merely a placebo with no medicinal value.

·         The “study”, “trial” and “evaluation” is just that.  The treatment has not been fully evaluated, so even if I get the actual treatment it may not be very effective…if at all.

While enrolling in the study these facts are reiterated over and over.  To consent for this treatment, I had to acknowledge that I understand these points and all the risks involved in a clinical trial.  I am reminded that this cannot be considered a final treatment option, as it is not fully evaluated or approved. 

Translation: it may not work.  Even if it does work I may not actually get the treatment.  Even if it does work and I do get the treatment it still may not work for me.  That is a lot to take in!

So I consented.  I agreed to the trial, and that I understand all the risks, and that I may not actually receive the treatment, and that if I do it may not work, and that if it does it may not work for me.

…but what if it does?

2013 into 2014

So here I am ready to embrace the new.  The holiday season is in full swing.  My focus is already underway for making what is great in my life that much better.  My family and friends are at the center of this year’s celebrations.  December 28 will roll into January 1 again, like it has 41 times before in my life, but then it rolls into my first treatment on January 3.  I will go through new, unchartered territory next year.  I will change significantly in 2014.  Treatment or placebo, effective or ineffective, improvement or decline.  One way or the other, my MS will change.

It’s going to be one heck of a ride!...and a great story for 2014!

I am looking forward to keeping you up to date on my adventures!

Kevin Byrne - Portland, OR

www.brieandkevin.com

(1) Saisho Mangla, BS,  Seema Jain, Stephen Selkirk, MD, PhD; Disease-modifying agents in progressive multiple sclerosis; Department of Veterans Affairs Journal of Rehabilitation Research & Development; Volume 48, Number 10, 2011; 1224.

What's it like to have MS?

Perhaps a better title is ‘What’s it like right now for me to have MS?’  My MS symptoms change from week to week (or more lately, from minute to minute) as the disease presents itself differently.  Sometimes it’s hard for my friends and family to appreciate the full impact of my MS.  Do I need assistance with something?  Maybe just a little extra time?  Should they ignore my struggles and let me deal with it on my own?  Is this something that has nothing at all to do with MS (a cold dragging me down, a few drinks, or my charming personality)?  In the past, I grew frustrated when they couldn’t understand.  Now, I realize how difficult it is for me to know what this disease is doing to my body at the moment.  Just like I have no idea what my peers with MS are experiencing, I can’t imagine someone else trying to understand what is going on.  Sure, some of our symptoms are the same but it’s that special combination of effect, severity, timing and duration that makes every situation different.

With those disclaimers out of the way…what’s it like right now for me to have MS?  Many of my symptoms are unfamiliar ground, as I learn to live in a new body.  The truth, however, is that I’ve experienced most of these symptoms before.  Many of you have as well.  The issues I’ve experienced before are now the physical demonstrations of what MS is doing to my body.

Some of these may sound familiar to you:

·         My left arm sometimes doesn’t work very well (or at all).  I remember the same thing happening  when I was a younger man.  Back then it was a sort of tough guy pride from when I would go to the gym with my pals.  In the gym everything was a competition. The only way to “win” in the weight room was by lifting more weight for more reps.  If you did more, you won.  There weren’t physical prizes but that smug pride was worth more than gold.  Maybe a quick comment thrown into the conversation later that night when we all went out for some chicken wings and beer!  The problem came when you couldn’t even lift a chicken wing up to your mouth.  Your arms felt fine but they seemed to have a 400# weight holding them down.  That was the point when your win faded and your pals realized that you were spent.  Like any loving 22-year old male buddies would do, they laughed, flicked your sore bicep and threw fries at you!  They knew you’ll be back soon, but for the moment they were relishing in their “win”.  When this happens to me these days, my pal is Eleanor.  My 3-year old daughter watches me struggle to lift my fork to my face.  When I can’t, she asks “are you not feeling OK today, Daddy?”  “I’m OK, Ellie,” I tell her, “I just need a minute.”

·         My legs (mostly the left) have all sorts of challenges.  Foot drop, knee hyperextension and muscle spasms are all side effects of the damage to my nervous system and its ability to maintain coordinated control.  I experienced all of these, in one fashion or another, in my active pre-MS days.  Damage on the football field, the rugby pitch or the boxing ring was swift, violent and had many of the same side effects that I feel now.  Along with the injuries were sore muscles and painful leg cramps.  These issues came and went, maybe they slowed me for a bit, but I would work through the pain and get myself back into the game as soon as possible.  I’m still doing that, working through the pain and getting myself back into life.  The only difference now is that these ailments are a constant companion.  Time and rest don’t make them go away.

·         My right arm works fine, but I can’t really feel it.  I remember when I would lay on the sofa while watching TV or sleeping.  My arm would ‘fall asleep’ as I remained still.  After a while I would get up and move but my arm was still numb.  I could move it but couldn’t really feel what it was doing; I’d poke at it but still couldn’t feel anything.  As the blood started to better circulate in my arm I would start to get that pins-and-needles stinging sensation.  It was still numb and I couldn’t really feel outside touches but that awful, intense stinging was there!  There was nothing that you could do until it finally went away.  Mine hasn’t gone away in 14 years.

·         My speech pattern tends to slur, sometimes worse than others.  There is also the annoying habit of a stream of drool developing on the side of my mouth and sometimes I don’t notice it in time.  This classy scene is reminiscent of the late night condition that same group of young guys were in after one of those long nights of wings and beer (not me, of course).

·         When I was a kid, food “going down the wrong pipe“ was often a result of eating too fast at the table.  It tended to lead to a lecture on proper table manners.  These days aspiration of food into my lungs has an awkward, uncomfortable and potentially dangerous result.

·         Weakness in my left hand and arm is similar to my childhood memories of the first big snowfall of the year.  All the neighborhood kids would go out to play, building forts, having snowball fights, making snow angels and creating a good ol’ Frosty the Snowman!  Hours and hours out in the snow and ice was worth the price we would pay when we came back in with cold, wet gloves (if we cared to wear gloves at all).  It was a challenge to do anything, like grasping the door handle or unbuttoning your jacket.  I don’t think I ever tried it but sitting down and writing with frozen hands would have been pointless.  The hands would warm.  When they did that pins-and-needles stinging came on in full force!  Again…14 years and running.

·         Blurred vision is nothing new.  When I was a kid it was one of those magic pictures: stare at a photo of seemingly random dots and relax your eyes.  Your vision blurs but suddenly, a 3D image of a flower or cat would jump out at you.  Pretty cool, especially when no one else could see it.  It’s called an autostereogram, described as “the visual illusion of a three-dimensional scene within the human brain from an external two-dimensional image. In order to perceive 3D shapes in these autostereograms, one must overcome the normally automatic coordination between accommodation (focus) and vergence (angle of one's eyes).” (Wikipedia, the free encyclopedia, http://en.wikipedia.org/wiki/Random_dot_autostereogram, November 2013).  I no longer have ‘automatic coordination’.  I’m just the opposite.  Now I have relaxed, blurred vision all the time.  I spend a lot of energy pulling those images together into crisp and clear 20/20 vision.  With a little bit of effort, I can do it most of the time.  The real challenge starts when my body can no longer hold that normally single three-dimensional scene.

So, you ask me what’s it like to have MS?  The answer is simple:

It’s like being a weight lifting, boxing, rugby playing athlete in my prime who sleeps a lot on the couch, parties like a rock star, wolfs his food down, builds snow forts and is the neighborhood champion at autostereograms.

So…you know…that’s cool!

Kevin Byrne - Portland, OR

www.brieandkevin.com

Hey, Brie...

That’s my filler phrase at home.  It is the way I start a lot of conversations at home, hoping to grab my wife’s attention for my question, idea, thought, or conversation starter.  I think that she is starting to cringe every time she hears “Hey, Brie” because she knows what is coming next.  Something to do with MS.

      Hey, Brie…

•         Do you think I need to call my doctor about (fill in the MS Ailment)?       
•         I have another appointment tomorrow for (fill in the MS ailment)…       
•         My tests came back.
•         I need more tests.
•         I’m starting my new drugs tomorrow.
•         Today is a bad day.
•         Today was a good day.

Sometimes it gets to the point that every conversation is about MS.  Ailments, treatments, appointments,… it never ends.  When we go out a lot, we’re with other MS friends or at an MS-related event or we’re just with friends who want (or get) an update on my MS.

There comes that point in my life, usually once every year or two, where I realize that EVERYTHING is about MS!  It’s a shame because I love a lot of the things that we do because of MS:

       ·         The camaraderie and friendship from our MS support networks.

       ·         The accomplishment and excitement of our MS fundraising efforts (GO TEAM AMULET!)

       ·         The excitement I feel when I am part of an effort that will end this disease forever.

It’s a shame because I love all the aspects of MS support but I absolutely hate MS.  Brie gets all the issues we live through, plus she gets my thoughts about everything.  Still she supports me and the whole MS community (on the board of the NMSS Oregon Chapter and leading our BikeMS team every year).

I think that she’s getting gun-shy whenever I say “Hey, Brie…”.  She unfortunately knows where the conversation is headed.

Not this time.  As we putter through our daily routine and clean up from dinner, I come up behind my wife.  “Hey, Brie” I say as a wrap my arms around her waist.  “I Love You”

For a moment, MS takes a backseat to life….

For just a moment.

“Hey, Brie – I just wrote another story for the MS blog site.  Can you proofread it?”

Kevin Byrne - Portland, OR

www.brieandkevin.com

MS and the Hover Button

October 1993.  Class 94-01 was ready to take to the skies.  2LTs and WO1s, all fresh from their basic courses, were ready for Initial Entry Rotary Wing Training at Fort Rucker, AL.  Flight School.  The first day that you fly is your ‘Nickel Ride’; an folklore about the crusty flight school instructors who always said “If I had a nickel for every new student I taught…..”  During my time in flight school, most of the helicopter instructors were DACs (Department of the Army Civilians), retired Vietnam-era pilots.  Walking the flight line in the morning, you were treated to tall tales about the specific Hueys you were passing.  Rescue missions, firefights, midnight nap-of-the-earth runs, shoot downs and crashes.  Every tail number had a story to be told; the patched-up bullet holes across the fuselage lent credence to seemingly tall tales told by these men. 

Jimmy Weeks was my first instructor.  He was 59 when I went through flight school, but I would have guessed he was a lot older than that.  Not the healthiest of individuals, Jimmy would have to stop once or twice on the way to the aircraft to catch his breath.  Originally from Silsbee, Texas, Jimmy was a good ol’ boy who ate two bags of Red Man chew during a flight.  That wasn’t a mistype, yes he ATE it.  No spitting— just chew and swallow.  He hacked and wheezed as he talked us through our preflight checks, and took quite a bit of time to climb into the left seat of the Huey every morning.  My stick buddy (two students rotated time at the controls every day) and I used to joke about which of us was going to give Jimmy CPR that day.  We answered that with “Rock-Paper-Scissors” as part of our preflight ritual.  After two weeks of ground instruction I wondered how in the heck he ever got to fly, let alone become an instructor for Army Aviation.

The Hover Button

After preflight we started the engine and Jimmy lifted that 30-year old bird one foot off the pad and held it there.  You would have thought we were still resting firmly on the ground and not hanging in midair with two rotor blades spinning, beating the air into submission.  “The hover,” Jimmy squealed in his distinct southern

accent, “is the most important maneuver you’ll ever learn.  If you can do that, you can do anything.”  Right then, I learned that Jimmy Weeks was more at home in the seat of a Huey than anywhere else.  I found out later that Jimmy was a retired LTC who commanded B Troop, 1/9th Cavalry Regiment, 1st Air Cavalry Division in Vietnam in ’67-68. 

What that man repeatedly did is now part of 1/9 Cav lore.  And it all started with the hover.  Jimmy continued, “this is the hardest thing you will ever have to do in an aircraft.  10,000 totally unrelated moving parts, constantly working against each other, and it’s up to you to make them purr.  Find it.  Once you find the hover button, you will never forget where it is.”

The hover button is that magical place where everything becomes manageable.  After Jimmy’s demonstration of perfect harmony we went out to the training area.  For the next two hours, he scared me in ways I never thought possible.  He’d start us out flying straight and level.  The instant I took the controls, that helicopter was all over the sky.  Just before I put us into an ‘unrecoverable’ position Jimmy would take over: “I have the controls.”  Then, just as quickly as I lost control, he found that hover button and we sat idle in mid-air.  We were hanging in a training field perfectly still, only the gentle rhythm of the blades.  Perfectly still…except 50’ above the ground.  “All right, LT.  You ready?  Let’s see if you can find the hover button.”

As if I was issuing my own death sentence I uttered “I have the controls.”  For the next 20 seconds, I rode that beast.  Up, down, backwards, sideways.  I did everything BUT hover..  Jimmy just sat in the left seat and loudly let out his signature “Yee Haah!” over and over…. until we were again nearing that ‘unrecoverable’ point. “I have the controls” was all he had to say.  As if that Huey heard his command, she stopped again in midair.

“You’ll find it, LT.  We’ll just keep coming out until you do.”

Eventually I found my hover button. 

Once I found it, everything else was second nature.  You know the statement “it’s like riding a bike”?  Well, riding a bike has nothing on a hover button!  Once you find it, everything becomes easy; or maybe I should say easier.  Or should I say that now I was able to focus on the really tough stuff.  I transitioned from the UH-1 Huey to the OH-58 Kiowa, then finally to the AH-64 Apache.  Flying, shooting and leading air missions was the really tough stuff, knowing that you had found the hover button was a constant reminder that anything was possible.

It’s a great lesson in life: everything has a hover button.  The point at which the insanely difficult becomes mundane and easy, allowing you to focus on the really tough stuff.  It’s a great reminder in life.  I’ve used the reference many times; it was just as applicable holding an aircraft in midair as it was potty training my three-year old daughter earlier this year.  She found her hover button and no more diapers! 

In 1999, I crawled into the cockpit of an Apache at Camp Eagle, Korea.  New to the unit, I was flying with an instructor pilot.  CW3 Jamie Henry transferred the controls and I taxied out to take off.  Smoothly hanging the aircraft a foot off the ground, I calmly said “I wasn’t sure how easy this was going to be.”  That startled Jamie a bit since he forgot that I was getting back into the air after being grounded for 2 1/2 years.  A car accident with a nasty head injury kept me out of helicopters for a while.  The hover button let me focus on the tough stuff: nighttime flying in a foreign country.  That was fun.

One theory of MS is that we are pre-disposed to the condition.  Genetic factors, supposedly.  Certain physical traumas can trigger your first exacerbation.  Any doctor who reviews my medical records would say that the car accident triggered my MS.  Maybe.  Three months after that flight was my first attack that prompted my diagnosis.  As quickly as my aviation career resumed it came to a permanent halt.

Now I have a problem.  MS has no hover button.  The difficult foundation, the most basic challenge by which everything else is built on, changes just as I think I am getting the hang of it.  It seems that basic everyday function is too often the really tough stuff.  I deal with walking, speech, swallowing and vision instead of focusing on my family, friends, life and career.  The easy stuff is not supposed to be hard.

I was home the other week cleaning up toddler toys.  Struggling to lift my arms up and place toys on the shelf, all I could hear was Jimmy.  That distinct “Yee Haah!”—as I wrestled little plastic cars and farm animals—was as loud as on my Nickel Ride almost 20 years ago.  I smiled.  Jimmy didn’t take the controls from me; I only assume he didn’t think I had reached ‘unrecoverable’.

MS has no hover button, or maybe it does.  There must be something out there to make the easy stuff…well, easy, letting me focus on what’s difficult.  I just need to find it.  I will!

Jimmy Weeks passed away in 2008.  An aviation legend who continues teaching me lessons to this day.  .  On those tough days when I struggle to get past the basic, Jimmy still reassures me.

“You’ll find it, LT.  We’ll just keep coming out until you do.”

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…write…fight!

Never Stop… Never Quit…^®

Kevin Byrne

Portland, OR

neverstopneverquit.com
neverstopneverquit.blogspot.com

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

What Else Can I Do?

What Else Can I Do?

Since last year’s battles with multiple sclerosis, I’ve found that I have a hard time with many common activities: just the other day I couldn’t outrun Eleanor while playing tag in the backyard.  She’s adorable, but it’s still disheartening when my three–year-old daughter is faster than me.

That’s just one of the activities that I can’t do these days.  I won’t bore you with the entire list but it includes many things that I used to find great joy in:  running, hiking, swimming, sometimes even just walking a block can feel as strenuous as my toughest Army days. 

MS is relentless.  I never get a break from its effects.  Whenever I feel like I have overcome one challenge, it comes back with much more vigor.  As soon as I grow used to one difficulty, another will soon pile on, making it all rather overwhelming.  Frustrating hardly begins to explain my feelings.  To not be able to do what was once as routine as taking a breath…that’s a difficult change to accept.

My options are pretty limited these days.  In fact, there are only two available to me when simple tasks become insurmountable:

I do them anyway.  My Father’s Day from Brie was to go hiking.  The Angel’s Rest hike in the Columbia Gorge is 4.8 miles round trip with an elevation gain of about 1,450 feet.  I easily conquered this hike many times in the past.  The last time Brie and I hiked Angel’s Rest, I carried our daughter in a pack on my back.  This time, I made it about a third of the way before my leg just couldn’t do any more.  I pushed as hard as I could before it was no longer safe.  We drove back to Portland without saying much.  I felt proud of what I did and also frustrated over what I couldn't do.  Before I toss my hiking boots and trekking poles I will look over the ridge of Angel’s Rest again.  I have no other choice.

I do what I can.  Besides running, hiking and swimming, I used to bike a lot.  Then came the time when I could no longer hold on to the handlebars safely.  So I traded in my road bike for a recumbent.  Then I couldn’t keep my balance on two wheels.  So I traded in again, this time for a recumbent trike.  Last year I rode the 202-mile Seattle to Portland ride as well as 88 miles of the National MS Society’s BikeMS Oregon, climbing the 4,503’ of elevation gain through the Willamette Valley and Oregon Wine Country in triple-digit heat.  That was an amazing triumph over a tough round of MS issues and hospitalizations.  But, alas, that was short lived as I was soon to be back in the hospital just two months later.  That was November.  By the time March came around my MS had taken its toll again.  The thrill of those long bike rides just ten months ago is long gone. 

So I did what I could.  I changed my diet and daily lifestyle with a focus on my health and recovery.  Next, I got back into the gym to see what I could do.  I rode the stationary bike.  All I had in me was 10 minutes, going pretty slow, but that was a stake in the ground.  For the next few weeks I rode faster and at a harder resistance, back to the training rate that I was up to last year.  Now, I need to work on my time.  10 minutes became 15, then 20, then 30.  When I extended my time, it took a while to get back to last year’s training rate.  When I got there, I extended it again.  30 minutes became 45.  Last week I rode strong for an hour.  The week before that I took my recumbent bike out and rode 25 miles.  My goal is next month’s BikeMS Oregon.  I’m no way near where I was even last year, but I am doing what I can.

There is no other option.

So this year my goal is to ride, just ride.  I’m not sure how far or how fast, but I will ride. 

I’ll ride to increase awareness of my fight and everyone else’s who battles this disease.

                                                                                         

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!

brieandkevin.com/bikems

Kevin Byrne - Portland, OR

www.brieandkevin.com

Good Days

October 1, 2012. 

That was the day my newest battle with MS began, with the thought that screams “I can’t explain it, but there is just a subtle hint that something’s just not quite right.”  After that there were constant strings of bad days, the only intermittent interruptions being BAD days.  I am now classified as a “difficult patient” by the VA, not for my charming personality but rather the clinical difficulty of my disease.  At that time, I could only focus on trying to get used to my new body and fearing just how bad it would get. 

Today is April 23, 2013.  204 days later and a thought dawned upon me: I have managed to string together a few good days.  The concept of a ‘good day’ is different than it was in the past.  When I am walking down the street and I notice that I am not limping or dragging my leg; when I can raise my glass and ‘cheers’ my daughter at the dinner table; when I can talk to someone for 10 minutes; when I can write and type these journals.  Those are good days.

What makes a good day?  More importantly what compensates for, eases or prevents a bad day?  If I knew that secret, my friends, I would be shouting it from the rooftops.  Maybe someday I will cipher my MS codebook.  That is exactly what I am trying to do.  My compulsive behavior may finally yield the rewards I long for, as I recently started keeping logs of everything.  I am trying to see if there is a pattern between eating, drinking, exercise, sleep, medications, and about 14 variables that I track daily.  I have only been doing this for two weeks but I see a few patterns developing.  I’m looking forward to sharing this with my neurologist next month.  There is no way that I can do this myself and I will need all the help the VA can muster.

So I track my good days, and I track my bad days, and I track everything in between.  I have been focusing on healthy habits (water in lieu of soda), healthy meals, holistic treatments (acupuncture and nutritional supplements), my prescribed medication regimen and exercise.  I’m a 41 year old man who just learned (for the 1,000^th time) that a healthy diet and lifestyle is good for my body.  The days of a large peperoni with extra cheese and a pint of Ben and Jerry’s are over.  Go figure!

I am seeing a reward so desperately needed after this tough winter.  These good days bring the biggest smile to my face as I walk along the street in warm sunlight!  It’s euphoric!  But, alas, it’s also a fleeting moment…  As quickly as those good days come, they disappear.  I can’t yet predict when my leg will buckle under me, or my arm will stop working, or when I can no longer talk, write or type.  So I track those times and I look to see how to put a string of good days together.

I am really starting to get excited about putting in workouts in the gym again!  I really hadn’t been there much (at all) for the last 6+ months.  It feels great to get back.  I realize just how much I’ve stepped away from my fitness, both from MS and lack of activity.  It’s tough but the tired and the pain actually feel good for me mentally!  I worked out 5 days last week.  Most of it is in the gym on the stationary bike, ending with a 1 hour ride at a pretty tough level on Saturday!  I have done Mon/Tue so far this week.  It feels good and I am looking forward to building on this big step.

I’ve got a long road to recovery ahead of me, and I may never quite get back to where I was, but the thrill of the fight is alive in my spirit again!

It will never stop….nor will we

It will never quit….nor will we

This is why we ride

brieandkevin.com/bikems

Kevin Byrne - Portland, OR

www.brieandkevin.com

Sometimes

 “You OK there, Kevin?”

“Fine” is all I can muster between choking coughs.

Sometimes that’s the end of the conversation.  Those who know me will go back to their own business; the moment fades as quickly as it first erupted. 

Those who don’t know me as well may linger a bit longer, their focus remains on my persistent cough.  After a while everything is calm again.  Sometimes the topic is dropped, other times I have to explain myself a bit.  I prefer to not leave the thought in minds that I don’t know how to eat a sandwich, or that I take such obscene bites that I can’t even swallow my food.  Sometimes my mouth just ‘forgets’ how to swallow, at all or just completely.

Such is the world of MS……………..Sometimes.

The waxing and waning of my disease has become quite extreme over the past year.  Sometimes I can do things.  Sometimes I can’t.  Sometimes there is every iteration imaginable between the two.

After I was first diagnosed with MS I generally avoided sharing my disability with others.  Fear of unknown reactions, shame for feeling weak, and my stubborn refusal to give in were my reasons.  I thought that if I didn’t ‘look‘ disabled then I could avoid the reactions, shame, and stubbornness.  Sometimes there we issues, but not often.  I could handle the occasional issue.

That’s not the case anymore.  I always look disabled now; sometimes more than others. 

My willingness to share my disability with others is stronger today.  A few things have helped me grow in this openness.  I’d like to proudly say that I am no longer afraid of the reactions and shame.  That’s not completely true.  My greatest fault will always be my stubbornness.  As I learn to get over the fears of what others may think about my MS, I have a great catalyst….fears of what others may think if they don’t know it’s my MS.

·         I don’t take such obscene bites that I can’t even swallow my food; sometimes my MS acts up.

·         I’m not a clumsy oaf as a stumble, trip and drop my way through the day; sometimes I have worse days than others.

·         I’m not being inconsiderate if I can’t quickly get out of your way or I bump into you; sometimes…..

·         I’m not drunk when I sway, stagger and slur; sometimes…...

I’m more willing to talk about my MS when it helps me; I guess I’ve earned that.  I’m less resistant to accepting the help that I sometimes need; I am glad I’ve learned that one! 

Overall, I’m slower at some tasks these days.  Sometimes I can’t perform some of the simplest tasks without difficulty, if at all.  I need help more often than I care to admit.  This weekend I walked in the National MS Society’s WalkMS.  The 5km was interesting since my new legs haven’t handled that much yet.  I needed help sometimes; my cane was used for the first time.  It was easier with this group, since my fear of reactions and shame doesn’t exist.  Maybe my cane may be my way of sharing my disability with others.  My clumsiness, swaying or staggering may look less oaf-ish if I wield a cane!

I don’t want to change the way people see me.  I am still the same strong man as before.  I just need a little help and understanding because sometimes I can’t do the things I used to do.

But, quite honestly, I am happy and grateful because sometimes I still can!

Kevin Byrne

Portland, OR

Reality

Usually I deal with my MS every day in much the same way as I have for the last 14 years.  Resilience, determination, challenges, strength.  Those are the words that usually describe my fight.  I understand the reality of MS, but I often don’t feel that those difficult realities apply to me.  Or at least not for long as I usually quickly overcome them.  When I send out my annual fundraising letter for MS, my focus has usually been support for others.

It has been 14 years now since I first heard those words "You have MS". Like many others, my course is a daily struggle with pain and damaging effects ever since the first onset of my disease.   I am able to fight back, though!  Through the amazing medical treatment that I receive from my doctors at the Veterans Affairs Hospital, my body is strong.  Through the constant love and guidance from my friends and family, I have been able to maintain my daily life.  All the time, the support from advocacy groups like the NMSS have kept me prepared for today and whatever may happen next!

Now, Brie and I are focused on giving back and fighting for those who have helped so many. 

That sounds nice.  A nice story of strength and determination, overcoming the odds and rising to pay it forward.

That sounds nice but it’s not real anymore.  My MS is now pulling me back into reality, and today I see more reality than I have ever confronted before.

I am faced with some simple facts.

I am disabled and that disability is worsening.  In the past, I would usually get by without “looking disabled”, for whatever that is worth.  That’s not the case today.  The peaks and valleys are extreme.  On good days I can walk and talk with relative normalcy.  On bad days I can’t.  Brushing my teeth or getting out of a bath tub can become impossible tasks.  My slurring can be so bad I sound drunk at 10 in the morning.  My legs or arms will just stop working.  Those peaks and valleys can hit 5, 10, 15 times in a single day!  It can be exhausting to manage my limitations through prediction, preparing my surroundings and explaining to others those awkward moments. 

My medical treatment options have been nearly exhausted.  My body has rejected most active treatments to treat my MS and limit its progression.  I am on one remaining treatment currently on the market; the rest have led me to infections in my leg, kidneys, bladder, and spine as well as bouts of anaphylactic shock and meningitis.  Steroids no longer recover the increasing incremental damage done to my body.

This isn’t going away anytime soon, if ever.  It’s early April.  Normally I am starting my training cycle for the annual National MS Society BikeMS.  My focus is normally “how far can I push my body this year?”  This year my focus is on successfully walking, raising a glass to my lips, or picking my 3-year old daughter up.  I haven’t even started to grasp the issue of whether I can ride my trike, let alone how far.

I am faced with simple facts.  What comes next is neither easy nor clear.  How I move on from here will define everything that I am.

My life has been numb for the past several months, waiting for the resolution of “What’s Next?”

The reality is that this IS what’s next.  My next challenge to display resilience, determination, and strength.  My fight is still the same; my message just needs to face reality.

A World Free of MS  is still the vision but we’re nowhere close. 

New cases of multiple sclerosis that are diagnosed daily remind 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 still there.

Not yet, but we will get there.

It will never stop….nor will we

It will never quit….nor will we

This is why we ride

I wonder how far can I push my body this year.

Kevin Byrne - Portland, OR

www.brieandkevin.com