More Common than You Think

I’ve written previously about winning the reverse lotto. You know, those 50,000-to-1 odds of being diagnosed with what some people call “the cruelest disease “ – ALS. While I somehow punched that ticket, unfortunately I’ve still had no luck on the real Lotto. (And filling in every number didn’t seem to help either. Go figure). 🙂

But despite the prevailing thought of the ‘rarity’ of Motor Neuron Diseases like Amyotrophic Lateral Sclerosis, it’s more common than you think, even reaching down to affect the smallest of my local groups.

That reality became even more apparent as I learned of two more recent diagnoses out there in the real world.

You may have seen that Roberta Flack recently disclosed that she had ALS. Last week the award-winning singer (Killing Me Softly, etc…) went public with her diagnosis, and her Manager confirmed the fact that her beautiful singing voice had been all but silenced. She can no longer sing and is barely able to speak. Like almost all ALS patients, she will eventually lose that ability as well. Yes, that seems cruel.

I heard about Flack not too long after I heard that John Driskell Hopkins, a cofounder of Zac Brown Band, had also been diagnosed with ALS. (Aside, man do I love me some Chicken Fried. Guess it’s part of the music reversion I’ve had the last couple of years…). Late last year, Hopkins said he noticed a distinct loss of strength and dexterity in his hands. As a musician, specifically one who plays bass and guitar, that becomes a career-ending issue. Like all ALS patients, he’ll eventually lose complete use of those as well. Yes, that seems cruel.

My awareness of these instances had come after I had done some incremental research on public ALS disclosures (remember, I have internet now, unlike that 1982 job search). 🙂

Most folks think that ALS is rare… but it’s more common than you think.

It not only permeates the public domain of athletes, entertainers, military, and others, but you’d be surprised at how it hits those small pockets of local circles as well.

I think about some of the very public personalities who have been diagnosed with ALS…

Of course, most people know of New York Yankees Hall of Famer Lou Gehrig. He has become the de facto face of the disease, as ALS became commonly known as Lou Gehrig’s disease. Young, handsome, and in his athletic prime, his diagnosis and death exemplified the disease’s devastating impact. Yes, that seems cruel.

One of my childhood baseball idols, Hall of Fame pitcher Catfish Hunter also succumbed to the disease. Hunter won 224 major league games, including a Perfect Game in 1968. After retirement, Hunter noticed severe weakness in his right arm – the diagnosis, ALS. The same arm that had hurled him to stardom now signified the onset of the debilitating disease. Yes, that seems cruel.

In addition to Flack, Hopkins, Gehrig, and Hunter, there are so many others as well.

While not funny, I found a really strange coincidence in some of the famous figures.

Chicago Bears star Steve McMichael.
Physicist Stephen Hawking.
SpongeBob SquarePants creator Stephen Hillenburg.
And, of course, NFL star and huge ALS advocate, Steve Gleason.


Far from the spotlight of fame and outside of that public domain, millions of people (patients, friends, and family) are affected by ALS.

In an example of the randomness of this insidious disease and the havoc it wreaks on paths large and small, take my own local social sphere. Even with the supposed rarity of ALS, it touches the smallest of circles.

A child of mine played on a Little League team with another family who eventually had a member diagnosed with ALS.

A child of mine played on a soccer team with another family who eventually had a member diagnosed with ALS.

A child of mine played on a football team with another family who eventually had a member diagnosed with ALS.

These were people in our local circle of sports friends and families. In retrospect, it is beyond comprehension to think that as we were simply experiencing the joy of watching our children play, our families were blissfully oblivious of our impending diagnosis of a ‘rare’ Motor Neuron Disease and the treacherous road that lay waiting in the years ahead.

Yeah, it’s more common than you may think.

In fact, every 90 minutes someone is diagnosed with ALS. And every 90 minutes someone dies from it.

More troublesome, the National Institute of Health projects a nearly 70% (!) increase in the number of ALS cases over the next twenty years.

Along the way, this devastating disease will continue to rob us of our ability to play, to eat, to speak, to sing, to breathe.

Yes, that seems cruel.

And that’s why we desperately need to find a cure for this brutal disease.

Note. After reading this for final edits, I felt it came across as whiny and negative. If you’ve read anything I’ve posted in the past eight months, you know that’s not my style, nor is it my intention. So please understand, as I said from the very beginning, some of my posts will be brutally candid about ALS and its impact on people.

Ignorance is not bliss. I hope you can understand the need for candor.

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