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

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