Notes From the ALS Front - a Column by Rick Jobus

living, what's next, train, sweetness, support groups

Rick is a 62-year-old man who was diagnosed with ALS in January 2007. Currently a resident of Southwest Florida, he has lived in four other metropolitan areas, but greater Chicagoland will always be “home.” Rick is a degreed engineer, spending his career in the medical device industry. He’s had the good fortune of extensive travel throughout the United States, Europe, Asia, and the Caribbean. He writes, in part, to be an ALS advocate. Additionally, it is his hope that his output will help dispel the myth that technical folk and digestible prose aren’t mutually exclusive.

When the Reaper Comes A-Knockin’, We Must Get A-Rockin’

When I was in elementary school, my mom would occasionally take my brother and me to Woolworth’s, our local five-and-dime store. We would often have lunch there, and my staple was the open-faced roast beef platter, followed by a hot fudge sundae. Afterward, my brother and I were left…

Fear Can Be a Double-edged Sword

“Fear takes control — fear of the unknown Aware of what will hurt you You’re prepared to remain this way So sad yet safe with your afflictions Afraid to start a brand new day.” Those lyrics from the song “Fear (Of the Unknown)” by British alternative band Siouxsie and…

Awaiting the ‘Hope Begets Hope’ Aria

“Just what makes that little old ant Think he’ll move that rubber tree plant Anyone knows an ant can’t Move a rubber tree plant But he’s got high hopes …” — Frank Sinatra, “High Hopes” Recently, I watched the movie “A Hole in the Head” for the first time…

A Glimpse Into the ALS Time Continuum

“But if I had the Chance to start all over I would be wishing today On a four-leaf clover … If I could turn back The hands of time.” The 45 rpm single “Turn Back the Hands of Time” by rhythm and blues artist Tyrone Davis was a…

On Second Thought, You Can Keep the Change

“Ch-ch-ch-ch-changes (turn and face the strange), Ch-ch-changes, just gonna have to be a different man.” — David Bowie Many people dislike change, some to the point of fearing it. According to author and motivational speaker Scott Mautz, writing for Inc.com, “Overcoming a fear of change can be as…

Brother, Can You Spare a Dime?

“Don’t the best of them bleed it out While the rest of them peter out? Truth or consequence, say it aloud Use that evidence, race it around There goes my hero Watch him as he goes There goes my hero He’s ordinary.” The lyrics of the Foo Fighters’ song…

Babbling On About Current Events

“So, round and around and around we go, Where the world’s headed, nobody knows. Oh, great googa-mooga, can’t you hear me talking to you? Just a ball of confusion, Oh yeah, that’s what the world is today.” The Temptations song “Ball of Confusion” was released in 1970, following the…

United We Stand, Divided I Fall

“It wasn’t me she was foolin’, ‘Cause she knew what was she was doin’, When she told me how to walk this way.” Run-DMC’s hip hop adaptation of the Aerosmith classic “Walk This Way” conjures up images of every therapy session I’ve had during the ALS portion of my…

A Moment of Silence: Craving a ‘Re-lease’

“He wants to give the answers but his words are only Answers to nothing … They think this is the answer, But their thoughts are only Answers to nothing.” — Midge Ure “And the vision that was planted in my brain Still remains Within the sound of silence.” —…

Bearing Down With Equine Intent

“Welcome to my nightmare, whoa, “Welcome to my breakdown, “I hope I didn’t scare you …” If there were a “Welcome Wagon” function in the ALS community — whereby incumbent residents indoctrinated new arrivals — surely the introduction would resemble those lyrics from Alice Cooper. Grim statistics and personal…