Tuesday, November 28, 2017

How My Fight Against MS Broke (and what happened next)

For 15 years, I have reached out to friends, family, and colleagues with one message: the fight is not over and it won’t be over until a cure is found.
My delivery of that message has morphed over time.
In 2003, I was strong and felt the need, “to show thanks for those who helped me along the way, to fight for those who can’t, and to ensure our next generation will never hear the words, ‘You have MS.’”
Slowly, my theme changed.
“Brie and I deal with the effects of MS every day.  Fortunately for me, the continuous treatments/aid/support that I have received since my diagnosis in 1999 have made the difference.  It is a fight.  The fight, however, is not over.  For me and for the 1,250 persons with MS living in Delaware it won’t be over until the cure is found.”
“My medical condition stabilized (to a point).  Though still somewhat debilitating, I am able to function day to day.  I am under constant treatment through the Veteran’s Administration healthcare system.  Through their treatment and support, I am ‘healthy’ today.  Physically, I am as stable as I can hope to be until we find a cure.”
My words documented a declining, but hopeful, fight as my MS progressed.
“It has been 11 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!”
“My arms and hands are failing; my voice is weak; my days upright and mobile are fading.  My fight, however, remains strong.  A World Free of MS is still the vision.  The new cases of multiple sclerosis diagnosed daily remind us, we don’t yet have a cure.  The rapid worsening of my own disability is a reminder of the paramount challenges for all affected by MS.
“We will win this fight.  My goals still remain set on the recovery and rehab I’ll need to dance with my daughter, Eleanor, again.  If I don’t reach that target, I’ll continue fighting to ensure her generation never must hear the words, ‘YOU HAVE MS.’”

Each year, my tale of adversity and resilience had a strikingly haunting tone, one of familiarity. My progression, while unfortunate, is all too common in our MS community. I didn’t want to believe my course; sure I would be the exception that proves we are on the verge of defeating multiple sclerosis.
As summer wore on, and heat became a critical factor, the treasured motivational burst I normally experience before/during/right after Bike MS sputtered and stalled. Shortly after the ride, my condition worsened again. My leg weakened and my arm lost more function.
I grew restless from the seemingly futile efforts of generating motivation and fundraising for, what I began to see, a fictional future. Anxiety and depression kicked in without my realization, something I simply passed off as a byproduct of a highly stressful period in my life.
But, hey, that’s my specialty, right? I take pride in my ability to excel amidst such adversity.
This was too much. This has been going on for too long.
I Stopped
I stopped reaching out to fundraise, no longer focused on my fight to defeat MS. Instead, my energy switched towards higher priorities, repairing my personal life and focusing on my writing outside of the MS world. Unfortunately, I didn’t make any headway in either those areas. I wasn’t going anywhere; my fruitless efforts merely occupied time until a day would end. I started again when I woke the next day, right where I left off, still in limbo.
My depressed state may have snuck up on me, but it did not go by unnoticed. Documenting my dilemma in the Inconsequential Ramblings of a Condemned Man blog series was my attempt at a therapeutic confrontation of my fears. Coming face-to-face with, let’s call it what it is, this huge mountain of shit didn’t have the effect I had hoped for. I faced the complexities of my disease and finally realized they are not going away anytime soon.
I Quit
I didn’t have much of a reaction as my world slowly crumbled down around me. I didn’t hit the bottle; my drinking actually dropped significantly. I didn’t go out and further self-destruct my life. Instead, I didn’t do much of anything except hope for this to get better somehow. I was idly waiting for my Deus Ex Machina.** My anxieties and fears only heightened when I accepted the fact there is no salvation primed and ready to go. There are no more treatment options. A cure or effective treatment for me, if one exists yet, is still in the pipeline of research, discovery, development, manufacturing, or testing. My body and my mind must bear the burden of hanging on until our day comes.
This is where I spent the last several months, in a perpetual cycle of increasing debilitation, anxiety, and depression. My symptoms are worsening. It’s difficult to tell if my slide is medically induced or fed by my depression. It’s probably some combination of the two, but there’s no way to know for sure. Neither factor is going away anytime soon.

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!

As I watched this year’s fundraising season move towards a close, I sat by in amazement as the unthinkable played out over and over.
·         I stopped reaching out and fundraising, yet our friends and loved ones continued to provide incredible support. Over $60,500 came in. Together, we propelled Eleanor to the #1 fundraiser rank for 2017!
·         I stopped recruiting riders and building support for Team Amulet, yet another incredible array of friends, both old and new, rallied to ride and celebrate. Together, we raised over $84,700 as Team Amulet in 2017! Since our inception in 2003, Team Amulet has now reached an incredible milestone of over $633,000 raised!
Though I felt strangely alone, my friends, family, and loved ones rallied around our fight. Many found inspiration in my words. Eleanor and I were honored to speak and celebrate with the National MS Society – Kentucky/SE Indiana Chapter. We appeared in promotional videos for both the Oregon chapter as well as a national marketing campaign. Countless times over, I was praised for my great work and dedication. As my world continued to darken around me, I finally began to see the light so many others are generating in support of our fight.
I received a shocking reminder of something I had lost sight of long ago. The fight is not over and it won’t be over until a cure is found.
It will never stop. My body and mind will stumble. Times may come when I will break, hopefully to pick up and start again soon, but the collective WE will never stop.
It will never quit. While I face this gut-wrenching struggle to keep fighting and not give up, the collective WE will never quit. I am not alone in this fight.
I can’t even begin to express my love to all who helped carry me, even before I realized I was in need.
So now what?
That, my friends, is a question for which I would love to discover the answer! I don’t know. Even as I write this note, I’m trying to formulate an answer in my head.
My first step is to address some of the clutter clouding my mind and feeding my fears. Personal issues (divorce, moving, finances, etc.) do nothing but pound on a weakened body. Most issues are close to final resolution, for the time being. Maybe then I can assess what is real and what is my mind creating.
My next goal is to accept the fact I am a disabled man. Simply fighting to discount my adversities is pointless, they are here for the long haul and will probably worsen.
If you haven’t seen me in a year, my disability is far greater now.
If you haven’t seen me in a month, my disability is worse now.
You haven’t seen me in a week…
I need to learn how all of this affects my life from this day forward. There are no options when your body fails and functions are lost, you simply must learn a new way to live. That’s what I must do. My first blog is year was 45 Is the New 0. I didn’t realize how much worse everything would progress in such a short time, but I guess my commitment still stands true.
It starts today
Focus switches back to three priorities: my health, my mind, and My Little Love. Eliminating distractions, I’ll direct focus on my physical progression.
My attention will be both towards the rehabilitative and medical efforts I need to recommit as well as the logistical preparations for when my condition progresses beyond self-management.
Reducing the anxieties caught in my mind will surely be a welcomed remediation. I’ll take a break from outside distractions and focus on serenity. I’m looking forward to posting this blog, then immediately stepping away from my all-too-consuming social media distractions. I’ll get back to my writing, fantastic stories which have nothing to do with multiple sclerosis.
Finally, I’ll relish in renewed magic with My Little Love. Eleanor is finally at the age where the memories we make last a lifetime. If my body only has a short window of opportunity, those memories will be fantastic.

I don’t know how long my “sabbatical” will last, or what condition my body will be in when it ends. The fight against MS is surely not over, nor is my personal battle. Your continued support is definitely needed and immensely valued.
Most of you who know me already realize I don’t reach out very much, if at all. Writing is great because I get to share all my fears, concerns, joys, and imagination without having to open myself up at all (yes, I get the lunacy of my logic). I sincerely look forward to describing what this journey looks like when completed, and I prepare for the next adventure.
Until that day comes, please receive my sincere thanks for all the support you continue to give all of us fighting MS. We need every bit of it, and I apologize for not saying thank you enough.

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.

** Deus Ex Machina: The term has evolved to mean a plot device whereby a seemingly unsolvable problem is suddenly and abruptly resolved by the inspired and unexpected intervention of some new event, character, ability or object. Its function can be to resolve an otherwise irresolvable plot situation, to surprise the audience, to bring the tale to a happy ending, or act as a comedic device.

Tuesday, August 8, 2017

2017 Bike MS After Action Report (AAR)

More pictures to follow!
I share this report with you with the understanding that the only chance I have for a healthy future will come from new research and development. Please donate today to support our fight and share this message with as many others as you can.

As we rolled into 2017 Bike MS, much of my hopes and prayers rested upon the adrenaline boost I’ve come to cherish and depend on. My friend didn’t let me down! I’m grateful and proud to report my 15th annual NMSS event was a smashing success.
We arrived in Monmouth, Oregon facing 97° temperatures under a blazing clear sky. Team tent set up was quicker than normal, basically because I slacked on my team captain duties and did the bare bones minimum. My body held out for a few hours, thanks to that adrenaline and the opportunity to reacquaint with so many incredible friends. Fortunately, Eleanor was there to be my excuse for heading back to the room early and calling it a night. I knew Saturday was going to be a trying day; I still had no idea what my body would be capable of when the time to ride finally arrived…
My self-pity clouds started to amass early, as I realized how much longer everything took: 20 minutes to dress, 15 minutes to walk and reach our team tent area, 20 minutes to put my bike gloves on. Fortunately, I had help pumping my tires and ratcheting down my bike shoes (a humbling experience to have others care for your basic needs). I lumbered into my recumbent trike; suddenly I was transported back to the summer of 1999. After being grounded for 2 ½ years (the car accident which probably triggered my MS) I finally crawled back into the cockpit of the Apache helicopter. Like then, everything suddenly felt right and comfortable. A smile came over my face as I proudly boasted, “You got this!” Much like the day before, I just didn’t know how long my burst would last.
There were a variety of routes this year, ranging from 19 through 105 miles. I conceded the short route would be in my best interest, hoping to make at least that far. So, I headed out once again, alone with my thoughts and my music to keep me company. The route split off quickly, with a right turn for the 19-mile course and everything else to the left. It turned to the right and rode.
About a quarter-mile into the new course I cursed myself and turned the bike around. The only thought going through my head was, “If you finish 19 and make it back comfortably, you will be pissed at yourself for leaving it on the table.” I turned around and backtracked to the direction of everything else. The next split was easy. 32/45 one way, the remainder of everything else went the other. I knew my body wasn’t going past 45 miles. I still wasn’t sure my body would make 32… or 19… or less. I made the 32, and I’m proud to say I left absolutely nothing on the table!
It was an interesting little science experiment to watch my body struggle through 32 miles in the Willamette Valley. My left side bears the brunt of this disability. My hand wrapped around the steering post as it quickly cramped up. Breaking was not an option on the left side, shifting gears difficult and cumbersome. I relied on my right for all the steering, breaking, and shifting.
My left leg can’t push or pull the pedal. It’s basically just clipped in, with my ankle braced tight, its sole purpose seems to be adding difficulty and resistance to my right leg. My right carried the load and brought me back safe. I wasn’t worried about the strength of my right leg, it was the incessant pounding and cramping on the left which worried me. Nevertheless, the conditioning of my strong limbs and my stubborn motivation carried me across the finish line.
What a wonderful sight it was to see Eleanor jumping and yelling as she cheered me across, then running to me for a well-deserved victory hug! I was tired and sore, confident I pushed much harder than I should have. There was no other option.
Brie was ready to support. After 3 ½ hours of sitting in my trike and riding, my legs and arms were useless. She unclipped my feet from
the pedals, removed my shoes and ankle brace, and popped on my walking brace. It took Brie plus two other people to help me stand up and hold on while my wobbly legs tried to gain stability. I’ve given up a modesty in humbling situations such as this. There’s no way I can do it alone.
The rest and recovery time was longer than before. My body is suffering from not only the weakness of my failed limbs put the atrophy their immobility leads to. My adrenaline kicked in again and again, mustering up enough to celebrate with my team on Saturday night and to bike the next morning in the ‘I Ride with MS’ victory lap with all my friends fighting along my side. Overall, the weekend was less than I wanted to do yet more than I initially feared I would be able to accomplish.
Even more than crawling into the cockpit of my recumbent trike, the weekend held so much magic and promise. So many friends and loved ones of there to support and fight alongside me. Many are fighting their own MS battle; it’s wonderful to catch up with my brothers and sisters. We compared war stories of our setbacks since last year’s Bike MS; we marveled at the new technology and widgets we had to increase our mobility; we shared stories of new medications and new hopes. The most poignant part of our time was a chance to see how their fight with MS is going. I’m happy to say the progress for so many was positive. We love to share in their success, always happy to talk about how they were much worse in the past, restricted to a wheelchair, and now there gingerly walking around. We even sometimes reminisce about the good ‘ol days, how I rode the 100-mile century option just a few years ago, yet struggle today with my limited potential. We talk about the future (talk about the future a lot). Rarely do we talk about the future where our MS continue to overtake the mobility and functions we cherish. No, all I hear is talk about how we will overcome.
I awoke Monday morning with the grand plan of writing this quick AAR to share with my supporters and begin the next round of recruiting more donors. Although the alarm went off at 5:30, my day was not ready to start. I couldn’t get out of bed, unable to move my left side at all. A weekend of riding and exerting left me with an agonizingly sore, cramped leg. My left hand remained tightly cramped into a ball. My day would not start for a while; instead I laid in bed with a smile on my face.
“You did way too much. It’s going to take some time to recover. This weekend was more than your body could take. Good job, KB! Good job.”
It’s coming back… slowly.
Maybe next year all I will be able to do is half, for a quarter, or a tenth of what I did this year. If it is, I will do that plus a little bit more. I will leave anything on the table. This fight is too important.

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.

Thursday, August 3, 2017


2017’s Bike MS is just around the corner. On Friday, we gather down in Monmouth to begin the festivities: reacquainting with old friends & meeting new ones, riding the countryside on Saturday and Sunday, and celebrating our mutual commitment to defeat multiple sclerosis.

This year marks the 15th anniversary riding with the National MS Society. For the first time, I go into the weekend afraid. My body is failing at a rate I find difficult to track.

The Congressionally Directed Medical Research Programs (CDMRP) strive to transform healthcare for Military Service Members and the American public through innovative and impactful research. In support of MS, their vision is “to prevent, cure, reverse, or slow the progression, and lessen the personal and societal impact of multiple sclerosis.” I recently had the pleasure of reaching out to our members of Congress in support of continuing MS research under the CDMRP. This is a cause I wholly support, but what can I do when every aspect of their vision is currently beyond my reach?

Slow the progression
Lessen the personal impact
Lessen the societal impact

The simple answer is to fight with everything I have, to never stop, and to never quit. I have no other option.
There is no way to lessen or overcome my fear. My limbs won’t work well, or at all, nor can I will them to do so. Fatigue will set in the moment I wake. My eyes will fail, my voice will grow weak. When I strap into my trike, I have no idea how far my legs will push me, if they work at all. I look at the temperature forecast and wonder how much 100+ degree weather will compound my weakened condition. Above all, as I struggle to set aside these doubts and forge ahead, I wonder if this will be the last year my body will have the energy to even begin such an undertaking.

Fears will press hard on my emotions, every minute of every moment. Instead, I need to give myself a reason to fight.

[Inside Voice]:
“Don’t fight to overcome your fear, for your fear will not subside. Never.”
“Don’t fight to show your fear who is stronger. Fear is.”
“Don’t fight to lessen your fear, make it go away, or drown it out. Fear doesn’t care; fear is not fighting you; fear is merely present.”
“Just fight. Fear is there and it’s not going away. Focus on the fight and maybe, just maybe, you’ll win.”

I win my fight if I overcome that which feeds my fear, my MS.

Prevent, Cure, Reverse, Slow the progression are in the hands of science. I need to fight so I can continue to raise money and awareness in support of the research and development of new therapies to prevent, cure, and treat MS. This is why I ride!

Cure, Reverse, Slow the progression are also in my hands. I need to fight so my body has the strength, opportunities, and resources to attack the MS already inside me. My ongoing therapies need revamped support in the name of radical changes to diet and exercise. August 1 = Day 1. This is why I ride!

Lessen the personal and societal impact of multiple sclerosis. The emotional challenges of my MS cripple far worse than the physical. This is a manual focus, every single day. “Remember that, Kevin: this is a manual focus, every single day.” This is why I ride!

I don’t want my story to be left untold.
When we win this fight, I don’t want to say, “I wish I did more to end this sooner.”
If I lose my battle before we win this fight, I don’t want to say, “I wish I did more when I could.”
Instead, I want to say, “Remember when we… Wow, was I scared!”

I am left wondering how many others felt this way when they finally confronted the brutality of their own fight. How many who fell thought they would win? How many who won feared they might fall?
Please support my fight

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

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

Thursday, June 15, 2017

Harsh Realities of the Inconsequential Ramblings of a Condemned Man

* There is nothing on the market today with the ability to cure my multiple sclerosis or send it into remission.
* It is debatable whether or not my current medications are slowing the progression of my MS, giving me an extra year when, before, I only had a month.
* There is no known way to recover function I have lost, or will lose, due to the damaging effects of my MS.
* There is no way to predict, identify, or isolate early-onset MS, and eradicate the disease before it affects the next generation.
Not yet…
Overcoming those realities are my dreams; the only possibilities for realization come in the form of research and development. Your financial support is needed if I am going to win this fight.
Because it is a fight. The fight is not over and it won’t be over until a cure is found.
It will never stop…nor will we
It will never quit…nor will we
This is why we fight!

Please support our fight.
This is my pitch to support our fight and share our message as far as your networks will take it.

I first shared my beloved message of dedication and hope on April 30, 2008. At the time, I had no idea the impact, of those words and my worsening condition, would bring me to where I am today; but, where is that?
Am I on the launchpad or the brink? I hope the answer is the former.
‘Pray for the best, expect the worst, be prepared for both.’

Over the past three weeks, I have shared my soul (or showed my ass) in ways like never before. I wondered if I went too far when Brie reacted to things she never knew about me. If I’m going to ask for support, you need to understand why.
If I’m going to ask others to give what they can, I must demonstrate how I am giving everything I have.
“You have five minutes to win their hearts.
And, GO!”

Here I just a smidgen of examples in my life.

If my MS is going to cripple me, it will have to put up a fight
I spend 2 to 4 hours a day in physical therapy, pushing my body to its limits. Most days, I fall short of what I could do in the past. Yesterday, I showed improvement in my strength and endurance. I hope to match that goal today. Baby steps…
It’s not all bad; I do spend a lot of time on elliptical machines and stationary bikes; that gives me time to binge watch a multitude of TV series. By the end of next week, I will be free to converse with anyone interested in Season 5 of The Arrow! [Line forms here]

I will continue to adapt and overcome
There it more than one way to skin a cat, so to say.
When MS turned my childlike scribbling into completely illegible scratch, I started to type everything. As my ability type on a keyboard diminished, I transitioned to voice-to-text software. Every blog post I “write” and every novel/book I am currently “writing” is, more accurately, “The Spoken Word of KB.” [I expect a lecture from my priest for such blasphemy.]

I will demonstrate my tenacity and conviction in searching for a cure
I’m on approved medication #9 and trial medication #2, part of the continued search for the right combinations. I don’t know when #10 or #3 will arrive.

I will continue to serve my community
…as a member of the Board of Directors of the National MS Society, Oregon Chapter.
…as a Sunday School teacher for St. John the Baptist Episcopal Church.
…as the Treasurer/Director for The West Point Society of Oregon (alumni organization).
…as a team captain for Team Amulet, 2017 Bike MS.
…as a loving father, husband, dog owner, and the K in EMBK!
…as a loving family member, neighbor, and friend.

As needed, I will do more
My effort to drive support led to the founding of NEVER STOP NEVER QUIT, a nonprofit organization solely dedicated to augmenting existing efforts to fight MS.
The mission of NEVER STOP NEVER QUIT is to raise funds, support treatment, and promote awareness in the fight against multiple sclerosis.
Regardless of the fundraising efforts, 100% of the net revenue generated by NEVER STOP NEVER QUIT shall support larger/national organizations, with the specific intent of finding a cure for, and managing the devastating effects of, multiple sclerosis.
There is much more to come with this adventure.

And, I will do more
Be it speaking at national/regional events, publishing books, or selling motivational swag, a mountain of efforts are underway to continue raising awareness and funds in our fight.

I will share my story for the world
Remember, you are not alone.
I have so much more to say, so many more inconsequential ramblings.
* I am trying to figure out where some fit: what is the best way to categorize the effect of worsening edema?
* I don’t have personal experience with others. Unfortunately, I will.
* Others are not mine alone to share alone. We’ll figure out how to get there together.

And when I finally finish every effort I will undertake, when there is nothing left my body or mind can do, I’m confident my small contribution will be a glorious footnote in The Official Journal of the American Academy of Neurology’s featured article, “Finally: The Key to Fighting MS Revealed.”

How was that?
“Four minutes and 50 seconds. Not bad.”
Oh! Then, Never Stop… Never Quit…!


Bike MS: Willamette Valley 2017
Ride Details
Date(s): Friday, August 4 - Sunday, Aug 6, 2017
Start/Finish Location: Western Oregon University

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

Wednesday, June 14, 2017

Consequences of the Inconsequential Ramblings of a Condemned Man

Complications, side effects, secondary, and tertiary symptoms. Call them what you want, these consequences are the truly crippling effects of multiple sclerosis. My MS is not going to kill me; I can live a long, albeit hindered, life with numbness, pain, bladder problems, spasticity, etc. Multiple sclerosis will not be the direct/primary cause of my death. If all goes to plan, MS will be no factor when I die at the glorious age of 109-years old.
But, and I’m just hypothesizing here, if complications as a result of multiple sclerosis are a cause of my premature demise, here’s my top five list of ‘MS Things That Are Probably Going to Kill Me’.
5 – I will suffocate/choke to death
I should have this down pat, as I choke on food and drink all day, every day. Choking is normally no cause for alarm; I maintain a carefully measured protocol, ensuring my airway is cleared with minimal fuss or mess. It remains, unfortunately, one of my less graceful moves, as I continue to find new ways to scare the hell out of myself at least once or twice a month.
How many times can you play the lottery before you win?
4 – I will die in a fall or have an accident
There are a multitude of scenarios under the general ‘accident’ category. Many of the more likely candidates list under common activities such as driving, cooking, or swimming. I’m currently safe in all areas, or I recognize my limits and keep clear, but I do understand my ability will change more than the ‘normal’ aging man.
I don’t go in water over my head, for my comfort level in the one arm, one leg dog paddle is minimal.
Brie, can I use this is my excuse for wanting to eat out all the time instead of cooking?
I’m a good driver, a safe driver, safer now than ever before. Nevertheless, I watch and evaluate this one constantly…
Falling should be a category of its own, separate from other accidents. While I’m cautious, I still fall regularly. This past winter, I cracked ribs when I fell getting out of the shower, then again shoveling ice and snow. Just a few years back, I suffered a dual-spiral fracture while roller skating (don’t ask, it sounded like a good idea at the time); I have the titanium rod in my leg as a permanent reminder. I still push myself, for it is worth the risk to avoid becoming immobile/sedentary. I still go beyond my limits regularly, for I don't know where the moving bar is, nor is my brain ready to accept some limitations. Today, I fall often, with minimal permanent consequence. All could change at any moment. Hopefully, I will recognize this before I regret it.
3 – I will die from an infection
Medications come complete with a variety of infection potentials. In 2007, I nearly lost my leg, or worse, due to the reaction that developed into a staph infection. Aspiration pneumonia is a constant concern, caused by the food and drink so often going into my lungs. Cuts and scrapes are common; often I don’t see and cannot feel them to properly care for the wounds.
2 – I will die from a medication reaction
Reactions and side effects are plentiful, some are critical while others are just annoying.
Biotin, or Vitamin B7, is a supplement normally taken to promote healthy hair and nail growth, as well as other common afflictions related to a deficiency in the vitamin. Normally, it’s taken in daily doses of 20 to 45 micrograms (mcg). There’s preliminary evidence, and a current phase 3 trial is underway, to support benefits with the use of high-dose biotin in the treatment of multiple sclerosis. I’m currently taking 300 milligrams (mg) daily, the equivalent of 300,000 mcg! As you can imagine, my hair and nails grow at a phenomenal rate.
Some of my medications cause nausea (take with food, take on an empty stomach).
Many of my injectable medications over the years have caused bruising and other site reactions.
I would love to know what the heck I am taking to give me such incredible/offensive gas!
Then there the bad reactions I’ve experienced: bacterial infections, staph infections, gastrointestinal reactions, anaphylaxis, meningitis.
I am on an immunosuppressant, which reduces my body’s immune system, I get it. Medications are one area where the Army Strong mentality of, “give me what you got, I can take it!” does not apply. I can’t take it, so please give me only as much as I need.
1 - I will kill myself
This is a hard phrase to imagine, even harder to write. I honestly have no idea how far down the rabbit hole I went on my other trips, nor do I care to find the answer. I don’t want this to happen, and am shaken to the core merely discussing the topic of my suicide.
Suicide is a reality for everyone. For those at increased risk, whatever the reason may be, it will always be a danger, one which will not go away and must be acknowledged, confronted, and respected if it is going to remain suppressed.
If you are in need, if you are scared, reach out.
You are not alone.


The National MS Society is Here to Help
We Are Here
Our MS Navigators help identify solutions and provide access to the resources you are looking for. Call 1-800-344-4867 or contact us online.

If you or someone close to you has recently been diagnosed, access our MS information and resources.

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

Tuesday, June 13, 2017

Emotion, Depression, and Other Inconsequential Ramblings of a Condemned Man

Finally, there is a topic in which I have zero concern! Yep, no problems here.
Thank you for reading.

Since you are still waiting, I assume you already know me and await my caveat, or you’re merely anticipating juicy bombshells. OK, here’s one:
* On several occasions, I completely lost the ability to manage and control the emotional effects of my MS. My condition has led to withdrawal, mood swings, irreparable damage to relationships, depression, and thoughts of suicide.
“Why would you admit such a thing?”
Good question [gold star for you]. There are so many reasons to come clean about my emotional fallibility.
First, if you know me already, I’m probably not dropping any bombshell. Perhaps you recognize my predicament and feel sympathy for me. Maybe you just think I’m an asshole. I would like the opportunity to change your perception.
If I constantly remind myself this condition exists, my awareness may be the tipping point to staves off catastrophic results in my next encounter.
And third, if I share my story enough, hopefully, someone out there will understand they are not alone in their fight. Because you are not alone.
I have spanned an infinite loop of emotional changes countless times over. I fully expect to revisit everyone throughout my long and prosperous future. The 5 Stages of Grief & Loss do not have one pass through, but as many as you can handle. I haven’t shared many of these before, but, since we’ve become so close, I figure I can confide in you.
My first struggle lasted more than four years.

The shock of my initial diagnosis was softened by the fact that I could continue to do my job in the Army. For some reason, unbeknownst to me, my commanders approved my request to remain in command of my Air Cavalry Troop in Korea. It was the greatest act of trust, faith, and confidence for me, a non-deployable soldier, to remain deployed overseas in command of troops. I worked to minimize the effects of my disability by charging full speed into my work and alcohol. Nine months later, I chalked up my return to the States as ‘their greatest mistake’. For my new life in the civilian world, work and alcohol remained always by my side.
Peppered throughout this stage were manic highs and lows, as I struggled to find a better life.
3 ½ years after diagnosis, which included seven moves, across three states and three continents, I crashed (literally) out of the first stage. In my wake, I left a lot of shattered relationships and despair. I grew angry with my MS for all it had taken from me.
Silliest reasons of all was war. I was angry my MS stole my life in the military before 9/11. I’m ashamed to admit I marginalized the suffering and sacrifice of so many by referring to it as something I missed out on. This was 2002 and 2003; I had yet to realize some of the amazing accomplishments I proudly boast of today; had I an ounce of foresight, my bar tabs would have been much, much lower.
Peppered throughout this stage were manic highs and lows, as I struggled to find a better life.
It was around this time when I drafted my first suicide note. I created a logical list of reasons why life is unbearable and unfair; on the opposite side, I crafted my fears, my hopes, my dreams. Multiple sclerosis and suicide peppered every thought. I would give anything, do anything, to figure how I can move forward past this state. I ran to the only place I could think of: to my mommy, my sister, and my brother. I was willing to give up everything, though I truly had nothing, if I could find an answer.
So, my sister took me in as I gave up everything; I stopped struggling through manic highs.
For seven months, I struggled through trying to rebuild the life and once had before multiple sclerosis, only to realize it was neither the life I wanted nor a life I was capable of achieving. Career searches, neurology appointments, psychological counseling, they all kept me just slightly on the correct side of sanity.
“If I just get a job, I can get back to my feet.”
“If I just get a girlfriend, I can get back on my feet.”
“If I can just get back to my feet…”
I finally stop searching for my fix, finding solace in where I was and what I had to offer. Volunteering at the VA hospital, I learned about true suffering… true sacrifice… true service. Only then, did I want to only build upon where I was in life/as a person, regardless of why I got there, and not where I should be.
I used to feel gratitude for the fact I went through the stages before I met Brie, before Eleanor was born. That round was merely the first, the most pronounced. I have struggled through so many rounds of Denial – Anger – Bargaining – Depression – Acceptance:
* Every hospitalization, every setback with my multiple sclerosis.
* The approach of my 43 years, 79 days birth date (the age my father was when he killed himself).
* The process through my disability classification of ‘100 % Total and Permanent’.
* The death and disability of friends, family, and loved ones, and the realization I don’t feel far behind.

There will be so many more stages to face, as there is much grief yet to come. In between this, there is an endless string of emotional windfalls and emotional challenges.
I accept that challenge.
[Challenge Accepted!]
And, I raise you one bit of sarcasm, courtesy of Eleanor.
[What do you call a puppy on a bicycle?
            A puppy bicycle!]



Emotional Changes
Can be a reaction to the stresses of living with MS as well as the result of neurologic and immune changes. Significant depression, mood swings, irritability, and episodes of uncontrollable laughing and crying pose significant challenges for people with MS and their families.
Studies have suggested that clinical depression — the severest form of depression — is among the most common symptoms of MS. It is more common among people with MS than it is in the general population or in persons with many other chronic, disabling conditions.

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