Thursday, July 14, 2016

Bike MS 2016 – Let's Go Crazy

Bike MS 2016 – Let's Go Crazy

Inspiration. It takes many forms, often delivering the most unexpected of results. As we kickoff our fundraising push for 2016, inspiration comes, of all things, as memes.

This post falls under the category of either:
·         let’s have a little bit of fun
·         apparently I have way too much free time on my hands
·         I have to do this because I have no idea what Pokémon Go is, eliminating that option

Enjoy these takes of how I find humor in my MS. Afterwards, please take this survey tell me which one is your favorite! 
Survey is here:

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
* Inspiration: Prince and The Revolution, “Let's Go Crazy”, Warner Bros., 1984

For the full selection of Ellie's 2016 BikeMS mix, go to:

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

Wednesday, June 22, 2016

Bike MS 2016 – Little Dreamer


I watch Eleanor and dream of running.  All I see is some figure poised at the ready.
I see visions of her sprinting as hard and as fast as one can. The only goal is more. Legs starting out crouched, muscles compressed as they wait to explode. There is that final moment when everything is calm. Quiet. Peaceful. Suddenly and violently, every muscle snaps in an organized fashion. One set of quadriceps extending, as the leg is brought forward into the air, then contracting, bringing its foot down to pavement, jettisoning my body forward even more. Every other muscle in the leg is working with one sole purpose: support that explosion. Toes and the ankle are constantly making minor adjustments to keep the body stable. Hamstrings and calves compress as an army of thigh muscles raise the leg in support of the quads’ next explosion.  Each set of muscles working opposite to the body’s other side, together in perfect unison with the frame. Left leg. Right leg. Left leg.

The rest of my muscles work towards the same goal of balancing and guiding, keeping this mass in sync with the rhythmic propulsion these legs are generating. The heart, diaphragm, and intercostal muscles all work together in their chest, pulling in oxygen to push the limits of every muscle.

Finally, she stops, but it will still be some time before the muscles can rest easy. Her heart still beats rapidly to feed the body more needed blood. Balance, guidance, and sync are still very much a priority. Long after all the other muscles calm, quadriceps still twitch. They’ll continue to do so until the whole body is finally at ease or until she gives them what they really want, which is to run again.

But she won’t do that now, nor will I, as there is nothing more left in us. At least not today.

I read somewhere that you are a writer if you can tell your story; you’re a good writer if you can tell someone else’s; a great writer can make the reader feel a story that never existed before. There is also the time those three worlds come together. The reader can’t tell whose reality this is. Neither can the writer.

As I watch Eleanor, I know this dream isn’t an image of her. She is an amazing little girl, but she is also just six years old. That fire, that focus, isn’t there yet. There’s still too much in the world to see to waste time with such a fixation.

Nor is this story mine. I don’t remember what it feels like to run. I’ve seen pictures and videos of me, but those images remain foreign. As I’m barely able to stand up straight and walk, I can’t remember what those muscles felt like during that contraction and explosion. With the constant numbness, tingling, and spasms, imagining those muscles twitching in anticipation of another round is beyond me.

I can only dream… and wait… and pray.

This scene I’m visioning belongs to no one in particular. My dream is someday Ellie and I will make this ours together. She’ll get there. Her gross motor function continues to develop at an alarming pace. If we are going to run together like that again, all the work is on me.

The last time Eleanor and I raced was March 1, 2014. We were on a trip to Disneyland with family friends. After a long, fun day in the park, we paused for a moment to rest our legs and refill our bellies. Everyone was in fine spirits as we walked back to the park entrance. Though already weakened by the onslaught of secondary progressive MS, my legs felt surprisingly good that afternoon. As we continued to walk, giggling and laughing, Ellie surprised me by blurting out, “ONE, TWO, THREE, GO!” She took off and, purely on instinct, I ran after her. The race only lasted about 50 feet, or so, but I’m proud to say I smoked that kid.  I probably beat her by at least two strides! Ellie doesn’t like to lose, especially to her Daddy on his lumbering legs. She broke down crying.  All I could say was, “Hey! It’s okay. Daddy just felt strong for a bit. That’s a good thing. Besides, I did look pretty good out there, huh? Right, Brie? Pre-tt-y darn good!” Ellie smiled and all was right in the world again.

Since that day, Eleanor has developed faster and stronger. I have grown slower and weaker. My mind still holds out for that day we race again.

For both Eleanor and me, that’s our dream.  I want to win.  She wants to see me try.

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
* Inspiration: Van Halen, “Little Dreamer”, Warner Bros., 1978

For the full selection of Ellie's 2016 BikeMS mix, go to:

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

Friday, June 10, 2016

Bike MS 2016 - Stand By You

“Did that hurt, Daddy?”
“Yeah, that one hurt a bit.”
I stated a fact there was no possibility of hiding, as I was already outed by the grimacing look on my face.

“I’m sorry” was Ellie’s subdued response as she slowly withdrew the syringe from my leg.
“It’s not your fault at all, Sweetie! Some just shots hurt more than others. It’s how the needle goes in through the skin, that’s all. What you did was perfect! You did another awesome job.”

“Cause I’m your little nursemaid!”

I watched how Ellie wanted to reach in for a hug so badly and I marveled at her restraint. She knows, no hugs yet, not until she’s finished. Clip and dispose of the needle. Put a bandage on my leg. Clean up all trash. Break down and put away the injector kit. One final sweep of the area. Wash hands. Then hugs!

My little nursemaid has assumed a new title in our home: caregiver.

Curiosity comes in steady streams for any six-year-old. Children of the chronically ill add another dimension to a world of already fascinating wonderments to see: medication. Early on, my goal was to relieve Ellie’s curiosity and subdue any impulse to explore my medications on her own. I welcomed her anytime I filled medicine bins or took my shots, explaining in as much detail as I could articulate and answering every question as honestly as possible.

“Why do you have so much medicine?”
“Well, I have a lot of different needs.”
I went on to explain the purpose of each medicine and supplement, the dosing differences, and the tracking I use throughout the day.

“Will they get you better?”
“Right now, there isn’t anything that will make me better. Some, like this one here, help ease my symptoms so I can walk and move a bit better. But, no, there’s yet nothing to completely heal me. That’s why Mommy and Daddy do all that stuff to support more research.”

“Like Bike MS?”
“That’s right, like Bike MS.”

“Will you die without your medicine?”
“I could get worse if I don’t take them, or if I take the wrong amounts. I need to be careful. That’s a big reason why you have your medicines and I have mine. We never take each other’s medicine, and we only take the amounts the doctor tells us to.”
Ellie remembers every lesson. She’s eager to ‘educate’ others with her vast knowledge of medicine’s efficacy and safety protocols.

My objective was successful: Ellie understands the diligence needed around medication. She’s not curious about touching or tasting any of them, and she knows the dangers associated with all drugs. Eleanor developed understanding and a strong respect for my medications.

But My Little Love soon developed an even greater quality: compassion.

She wanted to help me fill my pill dispensers, so we do it together. I count out the weekly dosing, Ellie fills the bins. Two of the big yellow pills in every bin; two of the little pink ones in the evenings; one of the little round ones in the mornings; and so on. Eventually, colors and shapes gave way to names and dosages.

“Why is the fish oil a 1,000 milligram pill but the Baclofen only 10 milligrams? They’re just about the same size?”
“The dosage just tells you how much medicine is in there. Some just have more filler, to help help you digest them easier.”

Curiosity was the precursor to her desire to “help make Daddy better”. We still do everything together, but her “helping me out” quickly gave way to actually helping me out! Her dexterous fingers work so much quicker than my numb,   feeble digits. With so many combinations of pills, two sets of eyes are always better than one. Every week, in every way, Ellie helps make me better.

I have been self-injecting medicines since my diagnosis in 1999, with my shot total now in the thousands. When I was first diagnosed, I was approved to remain stationed overseas in Korea. The Army ordered my medicine. When it arrived at the Yongsan Army Garrison hospital in Seoul, I took a 3-hour drive from my base camp. There, the medical team gave me a 6-month supply of Avonex and a videotape on how to inject myself. From Day 1 (December 3, 1999) until May 8, 2016 no one but me has ever given me one of my injections. Together, we slowly we broke that barrier.

Ellie started by watching my give my injection, always curious.

“Why do you wipe your leg like that?”
“It’s an antiseptic wipe, to clean any germs off my leg that could cause an infection.”

“What do you do with that thingy?”
“It’s an injector gun. It’s makes it easier and less painful to take the shot by pushing the needle in straight and swift. It still hurts, but not as much or for as long.”

 “Can I wipe your leg?”

After weeks of careful observation, Ellie jumped into the caregiver role. Over the next few injections, that role increased.

“Can I charge the gun?”

 “Do you always take the shot in your leg?”
“No. You just need to take it in a large muscle area. Sometimes I take it in my butt.”
“You said butt!”
We both chuckled a bit on that one. Butt.

Ellie’s diligence and care grew with every injection, taking on more and more responsibility with each new shot.

“Can I press the button (on the injector)?” ~May 8th

 “Can I clip the needle?”
For safety and convenience, my used needles are disposed of using a eedle lipping & storage device.

Eleanor is truly a caregiver in every sense of the term:
* From her tracking of my regimen: “Daddy, today is shot day.”
* To her management of my medicines: “Daddy, you are almost out of your Ampyra. You need to get more.”
* To her assistance: “Daddy, I can do that. Just let me get a band aid first, then I will clean it all up.”
* To her emotional support: “Daddy, I love you and I want you to get healthy. Thank you for taking your medicine!“

Caregivers play a role of immeasurable value, often at a personal cost best described as “not fair”. The VA healthcare system recognizes the value Family Caregivers provide to veterans (, compiling information on a variety of topics related to being a caregiver, as well the support and assistance they need to care for their loved one and themselves. I may have to push for an amendment there, as recognition and reward of the littlest caregivers desperately needs to be added to the list!

There are a lot of emotions surfacing as I write this story.  Thanks is at the forefront of them all. Thanks for having a daughter who holds such an amazing capacity for compassion, care, safety, and focus. I don’t know what Brie and I did to deserve such a treasure, but we sure do value our gift! Emotions of pride, wonderment, entertainment, and appreciation fill me every time we share our special moments.

My greatest moment of pride and appreciation came on a day when I did nothing at all.
“Daddy, is today shot day?”
“Yes, it is.”
“Can I get the shot for you?”
“Ellie, how about this. How about you do everything today?”
Eyes wide open, “Everything? Yeah. I can do that.”
“Daddy, I’m ready. Where are you taking the shot today?”
“In the butt”
“Hee Hee! You said ‘in the butt’!”

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
* Inspiration: Rachel Platten, “Stand By You”, Columbia, 2015
I'll be your eyes 'til yours can shine
And I'll be your arms, I'll be your steady satellite
And when you can't rise, well, I'll crawl with you on hands and knees
'Cause I... I'm gonna stand by you

For the full selection of Ellie's 2016 BikeMS mix, go to:

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

Sunday, June 5, 2016

Bike MS 2016 - Shut Up and Dance


This adorable six-year-old girl is the only reason I can possibly think of as to why I’d ever change my mantra. The simple truth is SHE is why I fight. More accurately stated, Eleanor is a constant reminder of everything I hold dear. Through my darkest days when, to borrow a phrase familiar to my West Point family, “hope becomes forlorn", Eleanor is my rallying point. She reminds me of what I need to do: fight.

Please accept my loving apologies, Brie.  In am sorry if this disappoints you, Mom.  Eleanor’s influence is more powerful than any other woman’s hold on me. She is beautifully comfortable in worlds where I am her Daddy and idol, where we struggle together through emotional growing pains, where she is my compassionate caregiver, and in the days where we are truly two peas in a pod!

As we move into this year’s Bike MS season, I’ll use my blog as a podium from which I will shout her praises, hopefully offering some insight into the impact My Little Love has on my survival.

As I did for the 2015 season, the themes of my stories come from the music chosen for my ride.  This year’s playlist belongs as much to Eleanor as it does me.  Every song is reviewed and enjoyed by us both yet approved solely by her. Some choices may be obvious; others have the most obscure rationale behind them.  My stories may help explain why you may hear me rock out on the road to Pitch Perfect’s “Run the World (Girls)” one mile, then abruptly mix into the 82nd Airborne Chorus’ “Blood Upon the Riser”.  Then again, they may not…

Please join me for this 2016 Bike MS adventure.  Listen along as our choices grow (the mix is a work in process).  Enjoy the sounds and emotions Eleanor and I celebrate with daily.

Without further ado, in tune with the ever-looming demand from Ellie, Shut Up and Dance!

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

* Inspiration: WALK THE MOON, "Shut Up And Dance", RCA, 2014
Ellie definitely take my arm and leads me through some tough struggles.  Listen to this song, every line and every emotion, and try to capture a glimpse of my adoration, infatuation, and love for this girl.

For the full selection of Ellie's 2016 BikeMS mix, go to:

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

Tuesday, May 24, 2016

Don't Pity That Man

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

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

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

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

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

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

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

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

The fight is not over and it won’t be over until a cure is found.
It will never stop…nor will we
It will never quit…nor will we
This is why we fight!

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

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

Tuesday, May 10, 2016

Certavi et Vici

Please forgive me for my bit of a rant.

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


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

“I’m struggling.”

“Are you holding altitude?”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Then came April…

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

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

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

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

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

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

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

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

“What does that say below?” 

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

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

It’ll never be true if I don’t fight.

The fight is not over and it won’t be over until a cure is found.
It will never stop…nor will we
It will never quit…nor will we
This is why we fight!

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

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

Tuesday, December 15, 2015

The Realist and The Optimist

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

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

Lately it seems like all I do is prepare.

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

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

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

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

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

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

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

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

The fight is not over and it won’t be over until a cure is found.
It will never stop…nor will we
It will never quit…nor will we
This is why we fight!

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

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

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