Tuesday, October 2, 2012

Welcome back, my friend!

I can’t explain it, but there was just a subtle hint that something’s just not quite right.  That’s the way my MS fights.  The issues first appear as some annoyance that you shrug off as being tired, not paying attention to stuff, or maybe having one too many the night before.  Those new issues are just accepted; not even focused on or thought about.  Hell, if I focused or got worried every time I had an “issue” I wouldn’t get out of bed in the morning!  With MS, issues are normal; sometimes it is difficult to realize that some of those issues are new.  MS is sneaky and its resurgence can be slow.

For me, it took over a month this time.  I had recently finished BikeMS.  That pushed my body and my mind hard.  It was a great event that I prepared for months before, and expected a bit of recovery on the back end.  So numbness and tingling are just part of the package for me.  It has been that way since 1999, so just a little bit more is no big deal.
*** Monday
There’s that point in every MS episode when the reality of what is happening settles in.  5 weeks later was that point for me.  While preparing for my regular 3-month appointment last week, I reviewed with Brie.
“I need to talk to Mary (my NP) about this new numbness in my hand”
“Be sure to tell her about your slurring”
“I’m slurring again?”
Crap.  All at once everything comes together in that moment of clarity where all my issues become a pattern.  I realize just how bad my “normal” has become again.

At that point, it’s as if my MS realizes the jig is up and subtly goes out the window.  Welcome back my old friend!  Now you are moving fast and I am scared.

When I was first diagnosed with my I didn’t fear MS attacks.  The fact that I didn’t know what MS was at the time sure helped me avoid any confrontation.  I got sick and I had issues; that’s enough explanation that an Air Cavalry commander needs to know before he focuses on the important issue: “Now what?”  “Now what?” was my priority and focus: treatment, recovery, moving forward.  My MS issues continued so my Army career was over.  That just extended the “now what?” for a while.  Moving forward, transitioning, and settling in to my new life. 

MS stopped my Army career and turned my world upside down.  But I didn’t “have MS.”  I didn’t deal with the relapsing-remitting issues that sick people had to deal with; in fact, I visited with a neurologist one time in the private sector who even suggested that I had a mono-symptomatic neurological disorder and not MS.  One big issue that I would deal with for the rest of my life, but that’s it.  I asked if I should stop taking these drugs that the VA had me on.  Quickly backtracking with a definitive “no”, he explained that there is no surety either way; so best to play it safe and take the medication as if I do have MS to treat.  OK.

When I had my first exacerbation I still didn’t fear MS attacks.  It was easy since I didn’t know I had an MS attack.  My eyes were getting bad and I needed glasses (or so I thought).  The funny part about that one was that when my eyes improved in a few months I thought they were getting worse because the glasses weren’t working anymore.  I just stopped wearing them after a while and dealt with my new normal.

In 2005 I called my then-girlfriend, Brie, up and told her that I was going to the VA hospital.  I couldn’t see from one eye.  After a long day of tests, my neurologist and ophthalmologist broke the 6-year old news that everyone already knew: I had MS.  “So that’s what an exacerbation is?” was my reaction.  They still didn’t scare me, but know I formally met an MS attack.

The fun part about my MS is that the exacerbations are usually quiet and subtle.  It’s everything else that takes center stage: balance, falling, broken bones, muscle infections, surgeries, anaphylactic shock are just some of the great times from dealing with what my MS has already done to me, and my attempts to treat it.

Three years ago, I first learned to fear the relapse.  My eyes again.  Subtle changes from that new normal slowly crept in until I made the connection.  I didn’t like that one bit.  Again, my friends at the VA took great care of me and I recovered most of my vision.  This time, though, the damage was done mentally.  I was afraid of the next exacerbation:  when would it come and how bad would it affect my eyes this time?

Since then, progression of my MS has gone into hibernation.  MS waited until I let my guard down a bit.  After a year of MS-related illnesses, surgeries and other ailments I grew weary of looking for more issues.  Besides, my eyes are great.  It was that slow, sneaky progression that I didn’t see coming. 
You know, my boasting of being an old Air Cav guy loses its value when
I keep missing the enemy staring me in the face!

This time it’s not my eyes, but instead my issues are my arm, my slurring, my drooling and my bladder.  For the first time in our 13-year dance I am afraid of what is going on right now and how bad this is going to get.  This is going to be a fun week…

It’s 3AM.  I have an MRI tonight at 7PM.  This could be the longest day of my life.
Welcome back, my friend!
*** Tuesday
Today may have indeed proven to be the longest day.  A full day at work that seemed to drag out like day after day after another long day.  Running to the bathroom to empty an emptied bladder didn’t help my stress.  Everything stings, hurts, or has to pee.  My saving grace was being able to spend a little time with Brie and Eleanor before heading off to my MRI!

MS even managed to ruin Spa Day.  MRIs are a lot less relaxing with the stress of ongoing MS issues and the mind that likes to role play every bad outcome.  On top of that, I missed out on the VA MRI.  Due to the expedited need, I was sent to the medical school, OHSU, next door.  Alas, the rhythmic chiming of the machine eventually worked its magic and soothed my mind and body.

In the effort to maintain a sense of normalcy I will go to bed, wake up after a (hopefully) full night’s sleep, bring my daughter to daycare, go to work, and do it all again.  At some point I hope to hear the news of what’s next.  Until then, I will live my life like I always do.  Why?  Because I can and because I need to.
Not today, my friend!
*** Wednesday
The wait can be the worst past.  I know there is a problem; Mary knows there is a problem.  Until we know what the problem is, throwing drugs at it is like blowing out a candle with a fire hose.  I understand the damage treatments can do to my body, and the need to limit them, but I’m sure that everyone fighting MS has made the statement “just give me something to make this stop!” at least once…

I slept for 9 hours and woke up exhausted.  My left hand and arm hurts (just like the right one always does); my throat and face hurt; I’m slurring, drooling and running to the bathroom hourly with an out-of-nowhere need to pee, though little is there.  What can I do right now?  Just hold it together and try to focus on what matters: my family and my life.  I try to maintain a sense of normalcy, keeping my issues quiet and trying to go about my regular day without impact or “reactions of pity”.  Without knowing the background story, three coworkers yesterday told me (in a professional way) that I looked like hell today.  Great. 

One of my biggest fears about MS is how it will affect my career and my ability to provide for my family.  I’m a proud man; some may say cocky, arrogant, and aggressive.  I don’t mind those classifications.  The Army (West Point, Attack Aviation, Air Cavalry) took me in, groomed my natural need to succeed, and fostered that into the personal motivation that still drives me today.  It’s hard to be a successful professional, manage a team, and advance your career if you come to the office with a litany of physical issues and grow and change constantly.  I understand and am familiar with ADA (Americans with Disabilities Act) but I also understand subtle impressions and stereotypes.  I hate the fact that the impression of ability can be impacted by disabilities.  I hate it but I understand it; I am guilty of it myself as times.  Maybe I am wrong and maybe I am naïve but my fear of its unknown reaction leads me to keeping my issues quiet as much as I can.  I just quietly wait for my test results.  Masking my issues and worries from most, my fears continue to simmer.
Show yourself, my friend!
Some initial reports back.  I do have a bladder infection (yeah!); my MRI shows activity but the full comparison to my November scan is not complete.  The specific infection is still pending some culture tests later today.

Wow!  Relieved to have a bladder infection!   I guess that an infection and not further MS damage is better of the two crappy options.  Another side effect of my medication.
I’m fighting back, my friend!
*** Thursday
Some progress, albeit not much.  I do have a bladder infection, and they have started me on Amoxicillin.  What is causing the infection is not known yet.  Is it just due to a weakened immune system from my MS medication?  Is it due to an exacerbation causing more harm?  We won’t know until I get the report from my MRI.   The ‘expedited today’ MRI reading isn’t here yet.  I could go on about efficiencies and the pain of waiting even an additional second, but tonight is my day to make dinner; Brie is picking up Eleanor and I don’t want to miss out on one bit!  Besides, I have started on more drugs.  Throw another prescription at the problem.  What else can I ask for (he says sarcastically)…
I have more important stuff to do right now, my friend!
*** Friday
I put my MS aside last night.  Everyone fighting this disease, everyone fighting any debilitation, needs those days when they put their woes aside; even if it is only for a moment.  It is the glue needed to hold my emotions and my mental clarity together.  The simple life last night was exactly what I needed.  Grilling burgers on the back deck for dinner with Brie and Eleanor; sitting together as a family and enjoying dinner (as much as you can with a feisty 2½ year old); the Daddy duties of bathing that unwilling participant; finally, after Ellie’s bedtime, sitting alone with my wife.  Just decompressing from the day, enjoying some wine, talking about our day, watching a little TV, and spending time together.  No agenda, just together.  My MS fades for a while on nights like this.

I appreciate the respite from MS but I know it’s only temporary.  MS made a sharp visit and reminder at 3AM:  My arm.  Throbbing, aching, and fatigued.  It’s like I am trying to hold my arm over a campfire with a 50-pound weight hanging off of it.  The concept “pain is relative” is the most accurate statement I can make in this case.  My right arm has felt like this since 1999.  Most of the time I barely notice it anymore; I am used to it.  If I am asked the question “does it hurt?” my answer is typically no.  But if I stop and think about it, think about the pain in my arm, the pain is horrific.  The mind stops gauging the pain if there is no way to make it stop.  Anyone who understands physical therapy will tell you that the only reason to feel pain is to make you stop doing or heal whatever it is that’s damaging your body.  It you can’t fix it, no need to feel it.  My right arm figured that out years ago.  My left is just out of the starting gate.  He still is looking to heal.  I hope he does.

Hopefully some answers will come today.
Show yourself, my friend!
All my results are back.  Great news...and some of the worst news I could hope for.  This latest round is not something new.  My MRI lesions are completely stable: that’s awesome!  The bad part is that the infection is a normal reaction to my medicine.  It is apparently my new normal and probably will happen again.  The impact on my arm and face muscles are inflammations of prior lesions, harried by the infection.  That again is my new normal and probably will reoccur.  The answer for now is yet another prescription to pick up.  Great.

Just one more reason to fear my MS. 

You sneaky bastard!  What else could you possibly have in store for me, my friend?
Try all you might but you won’t win, my friend………
*** Sunday
So I finished 2 weeks living my greatest fears and challenges.  The result is both good and bad:  good for the immediate resolution but bad for the new normal in my future.  We’ll call this one a draw, my friend.  I went into the weekend with new challenges and new fears.  Instead of bowing to those fears these days were the best bits of life anyone could hope to experience, sick or healthy:

  • Enjoying my family and future with little Eleanor, dancing together around the living room without a care in the world.
  • Celebrating life with the marriage of wonderful friends.  Congratulations Joe and Chelsea!
  •  Affirming my faith through church service; a day made better the opportunity to bring Monte! for the blessing of the animals in honor of St. Francis of Assisi.
  • Cheering on my Yankees as this win Game #1 of the postseason.  You can take this boy from the Bronx, but you can take the Bronx from this boy!
  • With every celebration, with every moment both public and intimate, is Brie.  My life…My Love…

I live by a new set of rules now.  I don’t know what the next round will bring.  If the future is anything like the first two and a half days of this new ‘normal’ have been, I already have what I need to fight.

I will always win…

Kevin Byrne

Portland, OR

Tuesday, September 25, 2012

The Never Ending Battle

In the summer of 2011, I had been living with MS for 12 years.  Wow, how time flies!  Quite a lot had happened in my life since my diagnosis.  Ups, downs, and just plain sideways at times.  But in 2011 I was strong; probably the healthiest I have been since diagnosis.  I climbed Mt. Rainier and ran a tough 10k ‘mud run’ obstacle course before my MS reared its ugly head with a subtle, yet significant, signal: my balance.  I fell and broke my leg while roller skating.  Yes, I said roller skating…

That fall was the start of a series of events (both related to the fall and random) that led to the toughest year yet.  Over the next 12 months the mountain of issues climbed higher and higher.
·         I had my broken leg surgically repaired with an intramedullary nail inserted the length of my tibia; my first hospital stay.
·         I spent two other nights in the hospital tethered to a heart monitor.·         I visited the emergency room four times and had 16 other medical appointments.·         I experienced "mysterious" medication unexplained side effects like deep muscle infections, bleeding in the eyes, and one bout of anaphylactic shock. ·         I was prescribed 11 different medications in an attempt to and stem the progression of my disease. 

Daily life really starts to take its toll when MS becomes such a burden.  For me, the loss of all that physical progress was crushing.  I spent every last ounce of energy to get through all the doctors, medications, pain, frustration, and trying to start some rehabilitation.  Through all this I tried desperately to reduce the impact my disease had on my family, friends and my job.  For Brie, MS turned her from a mom raising a 1-year along old with her supportive husband to a overwhelmed working mother and caregiver.

The funniest part (funny?) is that all of these MS related issues (balance, medication and reactions, appointments and testing) made for one horrendous year without even one noticeable MS attack!  Every day my body is fighting the damage MS has already done and the attempts to hold off further disease progression.  Someday soon there will be better, safer and more reliable treatment options.  Today, this is the best available. 

The recovery started almost immediately.  Even while plagued by issue after issue over the next year, my progress slowly outpaced setbacks.  With my leg in a cast, I missed the 2011 BikeMS but vowed to be back for 2012.  So that became my focus.  Once I was healthy enough, riding was great therapy for my leg.  My worsening balance issues called for a modification to my strategy: a new trike!  I shared the excitement with you earlier this year in “Adjustments, Concessions and Embracing the New (aka, “My Bicycle”) Part II”.

Riding and training were the keys to my physical recovery.  Support and motivation from my family and friends were the keys to hanging in there emotionally.  The only way I was going to recover and rebuild was by living my mantra: Never Stop…Never Quit…  Sporting my snazzy bright yellow trike, my goal was to do that in style!  My target was, of course, to ride the full 153-mile event this year.  The hills would be the deciding factor; or should I say my legs on the hills would be the deciding factor! 

I was slowly getting healthy again with just a few months left to train.  Training was intense for a while.  Hills on a recumbent are the equivalent of towing a sea anchor!

My first true test was July 14th and 15th.  My brother, Tyson, and I rode STP (Seattle-to-Portland).  That’s a 205-mile ride, but a little less grueling due to a pretty flat route.  113 miles in Day 1 was a success!  I made it to our overnight rest-stop in one piece, albeit a little sore.  Rest, recovery, and just a little bit of celebrating our success gave me enough energy to roll back into Portland on Day 2.

That was good but I needed more, so I kept training.  After a year of broken bones, surgeries, infections, and the never-ending onslaught of new medications & treatments I had just one question as BikeMS neared.  How far can my body go?  My training had been focused on just that, rebuilding the strength and endurance in my legs.  That new titanium rod may make my leg stronger but my muscles weren’t quite the same as they were as when I climbed Mt. Rainier a year earlier.  So building the strength, speed and endurance needed had been my goal.  Weakened muscles from lack of use were compounded by the need to train a whole new set of muscle groups; riding a recumbent trike is way different than any other experience riding.

Pushing Limits in BikeMS
My target was to see just how far I could push myself on the Day 1 ride.  There were three route options to take: 30, 60 and 100 miles.  I wasn‘t sure what I would have in me.  30 would be manageable.  60 would be tough.  The 100 route looked insane!  I couldn’t leave anything on the table, however.  If I finish the 30 or 60 I will always wonder how far I could have, should have, gone.  So I opted to tackle the 100 mile route.

The ride was a physical roller coaster for me.  Not just for the literal slow (and sometimes steep) climbs and drops of the Oregon Willamette Valley, but also for the bursts of energy I was able to find just as I thought there was nothing more left in my legs.

How far could my body go?  Well, on a recumbent trike in 103⁰ heat my body went exactly 81.4 miles before it said “no more”.  My left thigh and my right knee finally wore out.  Both are victims of MS related surgeries and muscle/nerve damage over the years.  I stayed hydrated and fully lathered in suntan lotion, but my legs were just not strong enough.  That day all I could muster was 81.4 miles.  After being picked up I sat on the SAG Wagon (support and gear) with other riders and pondered how I was going to do more next time!

By the way, yes.  I did say 103⁰ heat.  Brutal heat is an understatement.  The last thing that any rider ever wants is a strong headwind but there were a few times I would have paid good money for cool air blowing across me.  Any air, for that matter.  I’m not sure how hot it reached down low to the asphalt on my trike but at one point I looked over and watched my odometer screen crack as it warped in the sun!  It was hot.  I was happy to make it back, kiss my wife and daughter and get some ice on my knee!

Saturday night we rested, recovered, celebrated a hard day of riding and listened to the MS Society’s program of events.  Honoring those who ride and support BikeMS is always a huge focus.  We know it’s a lot to ask, and we appreciate everything done in support of the cause (riding, donating, supporting).  What a great night indeed!

When I awoke on Day 2 I immediately thought of my legs…..wondering what it would feel like to pedal, walk, or even stand.  I’m happy to say that I had no problems at all!  A shorter route, lesser hills and lower temperatures combined to make the full route quite pleasant.  Still reeling from the lessons learned on Day 1, I spent much of my time on the road planning for next year.  Planning how to train and rebuild my body for the next ride.  After a tough year, I am so happy to be strong and healthy but I still want more. 

BikeMS 2012 ended on August 5th.  By the end of the month I was in physical therapy, working on building the strength, flexibility, mobility and balance that I have lost after years of MS.  I almost forgot how much rehab hurts, but less than a month into it and I already notice improvement.  As I start to think about 2013 all of my targets are Further, Stronger and Faster!

This is now….
As the summer of 2012 draws to an end, I can happily thumb my nose at MS one more time.  You threw all that you could at me and I came back strong!  I have the stubborn dedication, dedicated healthcare team, and loving support from my family & friends that will keep me going.  I know that my MS is not ready to give up.  Even now my body is going through a new round of pain and debilitation.  Will it last long?  Will it get worse?  I don’t know.  All I know is that I will be ready to ride for BikeMS 2013…whatever it takes!

It will never stop…nor will we
It will never quit…nor will we
This is why we ride!
Kevin Byrne
Portland, OR

Saturday, March 10, 2012

Guys' Weekend

Everyone who has worn a uniform has those fiends.  You shared the same wins, losses, doubts and fears together as you sweat and climbed the same mountains.  Everyone who had worn a uniform knows about those true friends; bonded for life regardless of what happens next.  When I was diagnosed with MS in 1999 absolutely everything in my life changed in an instant.  Everything, this is except my friends.  This is a story about three men who changed my life by committing that my MS changed nothing.

I met Bo, Ho and Dougie all on the same day.  June 28, 1989.  R-Day; reception day for the incoming class of 1993 at the United States Military Academy.  West Point may be a prime mark of military success for young men and women, but on June 28, 1989 it was a spastic day for at least four boys.  Coming from very different backgrounds from across the country, we were now expected to conform to one crisp standard.  Together & with the rest of our new platoon we made it through R-Day.

That first day carried on through that first week, month and finally the end of our first year.  We stumbled through, carrying each other and being carried.  Plebe year at West Point.  We were seasoned; no longer wide eyed and naïve.  At least that is how we saw ourselves in the world.  We refined that crisp standard.  We trained together, studied together, and tested each other.  All the time supporting each other, physically and mentally, in the ways that you would expect brothers to support each other:
·         By challenging each other to push on faster & longer, regardless of our desires to quit. 
·         By never letting up and never allowing each other to take the easier way out. 
·         By finding the humor and sarcasm in everything and trivializing our fears before those fears could ever take hold. 

That first year carried on through 22 more (and counting).  Separately, we have all travelled our own paths and are now in very different points of our middle-aged lives, again spread across the country.  Each of us has been individually defined by our careers, assignments, deployments, transitions, marriages, divorces, children, families, and unique life events in general.  Together, we are defined in much the same way as we have been since that June 28.  Every step of the way is marked by some story we’ve told a thousand times already. 

We talk as often as we can.  Sometimes more, sometimes less than we would prefer.  Every year, though, we gather.  Guys’ Weekend.  Our excuse to put aside our worries and concerns about life and enjoy time with each other.

Bo, Ho and Dougie know all about my disease and the ongoing litany of issues, hospitalizations and medications.  Sometimes we talk about it, usually because I am taking the opportunity to vent a bit.  But on Guys’ Weekend, I put all that aside in favor of the random banter, beer drinking, cigar smoking, good time crisp standard that we all maintain!  Not quite the same STRATC young men we were, but we can hold our own.

What’s so special about Guys’ Weekend?  For me, it’s the only group where I don’t have MS.  Sure, they know I have the disease.  They know about (and see) all of my issues and treatments.  For me, they don’t see that.  Bo, Ho and Dougie treat me exactly the same way as they always have, as one of them.  No more and no less.  Most important, no different than ever.  I can honestly say, besides these three men there is no one else whom I can say that about.  For someone with MS, being treated like everyone else can be the greatest feeling in the world.

I let Bo into my MS world this summer.  He rode with us in this year’s BikeMS fundraiser here in Oregon.  This is the world where I am Kevin: team captain of Team Amulet and one of the faces of MS.  For me, the angst preceding the weekend on my part was unwarranted.  He happily rode and celebrated with us, all the time surrounded by sites and stories of MS.  In the end, regardless of what he saw or heard I was still KB.  Nothing changed.

I’m headed off for Guys’ Weekend next week.  I’ll never thank Bo, Ho and Dougie for what they do (rather, for what they don’t do).  Nor do I have to.  They would just shrug it off anyway.  Maybe even poke fun at me for a while, then crack open another beer, then poke fun at me again.  Jackasses.


Kevin Byrne - Portland, OR

Thursday, March 8, 2012

Welcome Home

After I was diagnosed in September ’99, I remained stationed at Camp Eagle (Korea).  I was grounded from flying but still in command of D/1-6, an Air Cav maintenance troop.  Stability provided comfort as I tried to adjust to my MS.  The Army was my family and I was not ready for more changes.  Further health complications in late June changed that; in a few short weeks I was back in the US for my MEB (Medical Evaluation Board) and outprocessing.  My diagnose-to-retirement from the Army was a whirlwind of events and changes.  With those changes came a flurry of emotions, mostly fear of the unknown.

The MEB world was a cold and lonely place.  I felt as if everyone there had one single purpose: to separate me from my family.  In two short months at Walter Reed my fate was decided and I was ‘separated from service’; I think of it as the ultimate divorce.  Before I left, I was handed a copy of my medical records.  The specialist told me “when you get where you are going, find the closest VA hospital.  Bring these.”

When I get where I am going?  What does that mean?
Find the closest VA hospital?  Then what?
Bring these?  And do what with them?

I ended up in Pittsburgh, PA.  I had a new job and a new home.  Now I needed to find a doctor.  Pittsburgh has a VA hospital so I figured I would go there first then try to figure out what’s next.  Dazed and confused, I found the room for inbound records.  In October 2000, I walked up to the desk as a 28-year old retiree and handed over my records.  That time was a blur; I don’t remember the names, faces or just about anything that happened that day.  That day, however, has one crystal clear image in my mind.  The gentleman behind the desk took my records.  He reviewed the coversheet, quickly scanned some pages then looked up at me.
“Welcome Home, Captain Byrne”

“Welcome Home.”  Those two words summed up that visit and every day since then.  My family at the VA has been in lockstep with me ever since.

The VA always remain discreet, never calls attention to itself, and never expects any thanks.  I’m ashamed to admit that I don’t remember most of the names, although everyone is sure to introduce themselves every time I come in.  I do remember the care and support.  I want to take this time to acknowledge some of the most amazing women and men I have ever met.  This includes, but is no way limited to:
·         The Gentleman at the VA Pittsburgh Healthcare System records desk.  Your friendliness and help was the best thing that this frightened patient could have experienced.
·         The Pharmacy staffs at the VA Pittsburgh & NY Harbor Healthcare Systems.  You tailored my medication fulfillment around every oddball work and travel schedule I could come up with, never once telling me I was pushing my luck!
·         The Mental Health staff with the Wilmington (Delaware) VA Medical Center, because every MS patient will hit that wall.  You were there to keep me strong.
·         The Optometry, Ophthalmology, and Neurology staffs at the Wilmington VA Medical Center.  I walked in the front door one day in 2005 and told the nurse I couldn’t see out of one eye and the other was fading.  For the next 6 hours, I felt as if nothing else mattered to you.  I walked out on my own that day, arm in arm with my then-fiancé, on the road to recovery.
·         The MRI technicians at the Portland VA Medical Center.  Every time you stay late, come in after-hours, or tuck me in with a warm blanket, my anxiety disappears.
·         The nurses in the Nurse Infusion Clinic at the Portland VA Medical Center
Funny Story: while undergoing treatment last year, I felt a bit itchy and uncomfortable.  I walked up to the nurses’ station and said just that.  “I feel itchy” was actually full blown anaphylactic shock.  The nurse calmly said OK, asked me how my throat was and walked me back to my room.  For the next 3 hours, every nurse and aide on the floor was in and out treating me (and the 9 other patients who were there as well).  I walked out on my own that day, arm in arm with my now wife, on the road to recovery.
·         Mary, my Nurse Practitioner at the Portland VA Medical Center.  I’m not sure how many patients she has but during every visit and call I fell like the only patient in the VA Healthcare System who has their own personal caregiver!  I’m not sure I could have handled 2011’s rash of MS issues without Mary
·         Marsha, with Education at the VA Puget Sound Health Care System.  I’ve realized that writing down my stories is great therapy for me.  In 2010 I was referred to Marsha and she set me up with my own blog!  As I sit here typing my 16th entry I realize that I have lost count of the benefits I have gained and others have shared with me!

Thanks to these wonderful people, I realized that I never left my family after all.  They just stopped wearing fatigues. 

It’s great to be home with family!
Kevin Byrne - Portland, OR

Sunday, February 12, 2012

Angel's Rest

Last year I did a lot of hiking in the Columbia Gorge.  I was healthy, active and in my best shape since my 1999 MS diagnosis.  Starting out small, I climbed the Angel’s Rest trail; it’s considered a moderate hike:   4.8 miles round trip with an elevation gain of about 1,450 feet.  That first time out was great and so I pushed for more:  more elevation, more weight in my backpack, more gear, and more distance.  In June, I successfully climbed Mount Rainier!

Like it always does, my MS reared its ugly head again just a week after climbing Rainier.  It was issues with my balance…again.  I fell and broke my leg, severely enough to require surgery to insert a titanium rod into my tibia.  Recovery was going to take a while, but thankfully I was well on my way towards healing by the end of the summer.  I even was able to take a short hike with my daughter on my back!  I thought,  “That wasn’t too bad”.  Then my MS flared up and my body disagreed with my medications over the next four months resulting in three different MS drug therapies, one leg infection, one bout of anaphylactic shock and two more nights in the hospital.  I revised my thought to “That Sucked”!

So now it’s February and (I think) I am healthy again.  My leg is healed and my new medication therapy seems to be going well:  time to test out my new titanium leg and my revised realities of balance.  Where else to do this but on the trail I started with just a year ago:  Angel’s Rest.

Long story short…everything went well.  One hour and fifty minutes round trip, with nothing but my focus and the sound of deep, quick breathing to interrupt nature on that cold rainy trail.

Short story long…Angel’s Rest proved once again to confirm the challenges, struggles, benefits and satisfaction of my struggles with MS.

I went through my pre-hike checklist in my head, making sure I had everything that I would need.  My routine for preparing my clothes, food, water, and accessories was a bit rusty.  6 trips to the car to remember that ‘one last thing I forgot’ and I was on my way.  It’s about a thirty minute drive from home to the Angel’s Rest trailhead, where I will start my hike.  During that time every possible scenario and worry passes through my head.
·         Will my leg hold up to the hike?
·         How bad is my conditioning?  Will I even be able to make it to the top?  How long will it take?
·         Will I have trouble with my balance along the steep trail?

My conditioning was good.  I wasn’t wearing last year’s 50 pound pack but I felt strong.  My legs still showed that desire to NEVER STOP…NEVER QUIT…, even after the breaks, surgeries and infections the peppered the last 8 months.

I was excited and determined.    With the first step onto the trailhead, my concerns faded.  The rest of the climb was nothing but the moment and the future.  As I hike, I watch every step my feet take and every spot I plant my trusty trekking poles.  With each step, I am planning ahead on where the next 2, 3, 4 and more are going to go.  This routine starts to go on autopilot, and then my mind starts to wander on what I will conquer next.  Dreams and visions of hiking and biking this year run rampant and I start to formulate a plan to bring it to reality.  This is going to be a great year!

My balance was OK; I’ve realized “that’s just the new me”.  Until a cure for MS arrives, I will spend a lot of time focusing on my balance being a constant reminder of my disability.  Everything I do has to consider that limitation, while at the same time everything I do will need to push, strengthen, train and condition my body to overcome my disability.  I stumbled a few times but am proud to say that I only fell twice on the trail.

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!

It will never stop…nor will we
It will never quit…nor will we
This is why we ride hike!

Kevin Byrne - Portland, OR

Friday, January 27, 2012

Adjustments, Concessions and Embracing the New (aka, “My Bicycle”) Part II

I remember my blog entry from July 2010.  It was a reflection of the adjustments and concessions I have faced in my fight with Multiple Sclerosis and of my struggle to learn to ride a new bike.  My recumbent bike.

I have learned a lot in the past year and a half.  I learned that I can push my body past the limits MS once placed on me.  I learned that if I keep working on my strength, stamina, balance and coordination, those areas will continue to improve.  So I focused on these skills, just as I continue to focus on my overall wellness.  By the time July 2011 came around, I was 50 pounds lighter and in the best physical condition since my diagnosis in 1999.  In July, I climbed Mount Rainier and ran a challenging 10K obstacle course.  Both times my MS kept fighting me.  There were limits on how high or how fast I could push myself; regardless, I kept ‘raising the bar’.  At the end of the month, my MS reminded me it was still fighting for control: its grip on my balance won over on, of all places, a roller skating rink!
It will never stop…
It will never quit…

It was a long recovery from a broken leg and the resulting surgery.  That recovery gave me a lot of time to consider the need to embrace the “new”.  I’ve gained a lot in the last few years.  My health, strength and stamina are strong but my balance and coordination have indeed continued to degrade.  It takes something significant to drive that point home sometimes.  I pushed my limits on Mt. Rainier, the obstacle course and the roller rink much like I push my limits every time I ride my recumbent bike: falling a lot but always getting back up and moving on.
It will never stop…nor will we
It will never quit…nor will we

So how do I keep pushing with my limitation now fully exposed?  Much like before, it’s with adjustments, Concessions and Embracing the New.
  1.  I can’t safely climb mountains anymore, but I can still push myself on trails and hills below the snow & ice.
  2.  I can’t safely run the full obstacle course, but I can still run the route hard and just bypass certain tricky obstacles.
  3.  I can’t safely roller skate.  OK, we’ll just leave that one alone!  40 year old men, especially those with MS, have no business on roller skates anyway.
  4.  What do I do when I can’t safely ride my bicycle anymore?

After a lot of research, test rides and pondering, I am making the move to a recumbent trike.

A tricycle?  Really?

The last time I owned a tricycle I was Eleanor’s age!  Am I really regressing so far back that I need to ride a tricycle?

Kind of….but not really.  There won’t be handlebar streamers on this one.  The name will even be more ‘grown up’.  Not a tricycle, but a recumbent trike!

With my trike, I can push myself physically without having the burden of balance to weigh me down.  I figure if I can’t beat my MS, then I will just pass it by.

The next time that you see me on the road I will be riding my new recumbent trike.  I am already training hard to develop my ‘bent leg muscles – the hamstring, abdominal, quad and glut muscles that need to be strong to ride hard.  My legs are strong but I am not fully back from my broken leg.  Plus, this is different riding because of the new muscle groups required to ride a trike.  Training will be hard but motivation will carry me through.  I will be the guy passing other riders on that steep hill climb! 
My MS can’t stop me now.

Multiple Sclerosis has taken a lot away from me.  It has caused me to adjust my lifestyle and make certain concessions based on my limitations.  What my MS has never taken away from me is my motivation to embrace new challenges and opportunities.  My new recumbent trike is my new opportunity to live my mantra.
It will never stop…nor will we
It will never quit…nor will we
This is why we ride!

What’s the only way that a 40 year old man rides a tricycle?  By riding hard at the front of the pack!

Kevin Byrne - Portland, OR

Tuesday, January 24, 2012


How many new words do you learn these days?  For me, the answer is “more than I ever wanted to”.

Our daughter, Eleanor, is almost 2-years old.  Developmental experts say she is learning about 10 new words per day.  Neat words like puppy, graham cracker and all the lyrics to the song ‘The Wheels on the Bus’ (go round and round…round and round…).

I turned 40 recently.  I’m not quite sure how many new words I am supposed to learn these days.  What I do know is that the words I have been forced to learn are not as fun as Eleanor’s puppy or graham cracker.

Multiple Sclerosis
Those were the first tough words I had to learn after my diagnosis back in 1999.  With that came a flurry of overwhelming words.
Relapsing Remitting, Magnetic Resonance Imaging, Interferon, Lumbar Puncture
What is the best way to deal with these scary tongue-twisters?  Make it easy by giving them catchy abbreviations and nicknames.
MS, RR, MRI, Avonex, Spinal Tap

So I learned my new vocabulary.  I took my medication.  I visited the doctor a lot.  Life went on…

Over the past year, however, I have been forced to learn a slew of new scary words (and their associated nicknames):
Optic Neuritis (ON), Afferent Pupillary Defect (APD), Natalizumab (Tysabri), Progressive Multifocal Leukoencephalopathy (PML), Fingolimod (Gilenya)

Something very unnerving happened at some point in the game.  As my MS continued to impact everything that I did, those catchy abbreviations and nicknames went away.  I was faced with just the words in raw terms:
Intramedullary Rod, Anaphylactic shock, Bradycardia

New medications offered little comfort in the face of these new ailments:
Prednisone, Sulfamethoxazole/Trimethoprim, Cephalexin, Clindamycin, Doxycycline Hyclate, Capsaicin, Lidocaine, Zolpidem Tartrate, Meperidine, Propofol, Oxycodone, Oxycodone/Acetaminophen
It’s hard to find solace in a treatment if you can’t pronounce its name, let alone define how it works.

Lucky Eleanor…
Sometimes I long for the days of puppies & graham crackers!
Kevin Byrne - Portland, OR