Augie’s Quest Guest Author Series: Scott Smith’s ALS Story

Have you ever had that dream where you try and run but your legs hardly move? While you remain paralyzed despite your best efforts to flee, there’s inevitably some-“thing” gaining ground on you. Always gaining ground. Until… well, until you presumably wake up.

Evidently, nightmares such as this are common. So much so that there’s been much debate about the meaning behind the phenomena. There are theories about sleep stages where you are relatively paralyzed, thus leading to a disconnect during one of these movement focused fantasies. Or that dreams themselves actually play out in slow motion all the time. More symbolic, Freudian even, perhaps there’s significant resistance in your waking life.

It’s all a moot point though. This isn’t a dream. This is my existence. This is my life with ALS. 

When you try and try and try yet only sink further into the quicksand. It’s a helpless feeling that’s not unique to what I’m going through, but unparalleled in regards to strategy.

I’ve been obsessed with cracking this impenetrable nut that is ALS. But much like that aforementioned odd, viscosity morphing sludge; the harder I seem to fight, the more trapped I become.

Scott and his wife, Jamie, on their wedding day.

My progression in regards to muscle weakness has only accelerated over the past two months. Despite my impeccable regimen, there hasn’t been one thing I’ve added that appears to slow the degeneration down. This was not how it was supposed to play out. All the research. My consistency and discipline. A timely diagnosis. Doesn’t the universe know that I’m the guy who beats ALS?!

This new concept of therapeutic exercise has also been a bit of a moving target. My muscles simply will not adapt or recover the same as before. I’m constantly walking the tightrope regarding my routine as too much intensity or volume can do irreversible damage. Too little however, and I quickly lose the fitness I’ve built up over a lifetime. It all fits the quicksand narrative perfectly as ALS is a challenge one cannot outwork or simply “push through.”

I believe that it’s only a matter of time before I figure this all out. I still have a few more bullets in the chamber and an ace up my sleeve to boot. Though we are tired emotionally and physically, Jamie and I are nowhere near exhausted in our options.

While ALS is doing what it does so well (giving our plans the middle finger) we are regrouping for our next all-out assault. In the meantime we will have to fight smarter because no one in the history of this disease could possibly go any harder than we already are.

Aligning myself with Augie’s Quest was a no brainer for two reasons. First, we share the same mission to bring the benefits of health and exercise into our clients’ lives. There’s an added irony to ALS afflicting both Augie and I, given our primal nature to be active. Second, if we don’t find a cure we are most certainly going to die. Finding a cure, however, is highly unlikely unless we find a way to get more resources to research. And as it happens, research is Augie’s Quest’s top priority.

Because you know what I want even more than a power wheelchair? A chance to see my two little angels grow up.

Let’s get it together, let’s find a cure for ALS.

My friends at Life Fitness first introduced us to Scott Smith, a personal trainer, fitness advocate and young father from Kansas City. Like me, fitness wasn’t just his priority, it was his full time career. He is tackling his ALS diagnosis head on – joining forces with multiple ALS groups and advocating for better treatments. His story hit so close to home for me, and I’m thankful he’s agreed to share it with you. – Augie Nieto

Augie’s Quest to Cure ALS is dedicated to changing the experience of people living with ALS. Today, there is real hope, like never before. With Augie’s Quest, ALS doesn’t stand a fighting chance. Support our Quest to find a cure by making a donation.