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 Amazon.com. 

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