Last week while watching The Tonight Show with Jimmy Fallon, I watched as Jimmy along with his sidekick Steve Higgins and band The Roots as well as guest Rob Riggle complete the ALS Ice Bucket Challenge.

Within a week, ALS Ice Bucket Challenges had spread like a bad case of poison ivy. Definitely for a good cause, though I was hoping this recent fad would remain a part of the celebrity ether.

What the challenge does is raise money and awareness of ALS (amyotrophic lateral sclerosis) and the ALS Association. More commonly known as Lou Gehrig’s Disease, ALS is a progressive neurodegenerative disease that effects nerve cells in the brain and spinal cord.

According to the ALS Association’s website, “When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.”

My first awareness of ALS came when soap opera actor Michael Zaslow from the shows One Life to Live and Guiding Light died in 1998. I didn’t watch either of these television shows, but remember when he passed and seeing a video clip of him in his wheelchair. I felt shocked seeing how seemingly quick this disease took a person from healthy and active to death.

Then Des Moines Register columnist Rob Borsellino died in 2006.

I didn’t know Borsellino, but knew who he was. During the early 1990s and a staff member of the Iowa State Daily while an undergrad in Ames, I developed an admiration for certain writers of the Register.

Borsellino was way over my head, and yet I loved his intellect. And to see him? He was the ultimate hipster newsman when most hipsters were still in diapers.

In the later 1990’s I was a stringer for the Register and during various meetings with my editor, I’d spot him across the newsroom. He and wife, Rekha Basu, another Register columnist I admired, struck me as the essence of cool.

Then in 2004 Borsellino was diagnosed with ALS. And in less than two years he was dead. I still get mad about this. He was young, a mere 56. He and his wife had lives to live with their two sons, stories to write and share with the world.

Every time I heard the term ALS I thought about Rob and how unfair this disease was. Don’t get me wrong, ALL disease is awful. Be it cancer, diabetes, leukemia—I’ve yet to hear of a disease that I’d want. But there’s something uniquely insidious about ALS . . . unlike Alzheimer’s in which the person afflicted loses their memory, the person afflicted with ALS loses their body yet retains their memory, their inner workings.

Is it any different than the person who was the victim of a freak accident and wakes up paralyzed, unable to move or speak? It’s different in that doctors are usually able to determine what caused the paralysis. With ALS, the secrets of the disease remain just that, unknown.

For reason yet obscure, the disease tends to affect people 40-70 years old and “as many as 30,000 Americans have the disease at any given time,” reports the ALS Association.

“Early symptoms of ALS often include increasing muscle weakness, especially involving the arms and legs, speech, swallowing or breathing. When muscles no longer receive the messages from the motor neurons that they require to function, the muscles begin to atrophy (become smaller). Limbs begin to look “thinner” as muscle tissue atrophies.”

The ALS Association’s website cautions that no two cases of ALS are the same, that how each person’s motor neurons die will determine their symptoms, their longevity and how significantly it will effect their life.

To date, scientists have identified three type of ALS: Sporadic, Familial and Guamanian. Sporadic is the most common type accounting for 90-95 percent of cases while Familial is when there is more than one case in a family lineage and accounts for a mere 5-10 percent of all cases. Guamanian refers to a number of high number cases found in Guam and surrounding Pacific territories in the 1950s.

In a nutshell, there’s no rhyme or reason to who gets ALS. Most people afflicted with it will die within five years of diagnosis. Are there uglier diseases? Maybe. Are there more common diseases? Surely. But is there a spookier disease? Not in my opinion.

It strikes without warning, takes without question and kills without regard. It doesn’t appear to care about lifestyle, fitness or habits. It doesn’t care about ethnicity, body fat or gender. It doesn’t care . . . but I do, which is why when I saw my cousin Michele Picchi Cohen from Indiana post her acceptance of the ALS Ice Bucket Challenge last weekend, I knew it wouldn’t be long before the trend hit Iowa.

And sure enough, my trainer Ray Porter of Davenport put the challenge to me on Tuesday morning. When I completed it that evening and posted the video of my son gleefully dumping a bucket of ice water over my head, similar local videos began popping up:

Beck Maricle, son of Holle and Chris and a kindergartener at Ekstrand, had a bucket of water so cold the cubes had yet to melt poured over him . . . and he ran off, soaked and screaming;

Jennifer Petersen, a buddy from my Mt. St. Clare days who now lives in DeWitt and is the owner/practioner of Clinton’s Chiropractic Health Care Center, accepted the challenge;

And then there was Todd Seifert, also of DeWitt, who in true Todd-Fish fashion accepted the challenge put to him by his son, Mitch. While holding a coffee cup at the ready, suddenly a hose of icy water was turned on the poor man . . . and that, readers, was the best one yet!

To be a part of this crazy challenge visit www.alsa.org.

According to the ALS Association’s website, as of Aug. 20, $31.9 million had been raised since July 29, 2014. Up nearly $30 million over the same time period in 2013.


Originally published 23 August 2014 in The Observer.

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