Is It a Jinx or a Sphinx?
“You don’t tug on Superman’s cape, You don’t spit into the wind, You don’t pull the mask off the old Lone Ranger, And you don’t mess around with Jim.” Based on recent events, I might add…
Notes From the ALS Front - a Column by Rick Jobus
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.
Navigating an Uncertain (Lega) Sea
“The world will little note, nor long remember …” These words of Abraham Lincoln were his prediction that the speech containing them would have no permanence. Ironically, the Gettysburg Address would become one of most enduring elements of Lincoln’s legacy.
The Absurdity of a Progressively Debilitating Terminal Illness
“Oh, I used to be disgusted and now I try to be amused.” Those lyrics from the Elvis Costello song “(The Angels Wanna Wear My) Red Shoes” are an apt description of the journey that my perspective…
Taking Baby Steps in Search of a Cure
“Baby steps.” That was the advice imparted to Bob Wiley by his psychiatrist, Dr. Leo Marvin, in the movie “What About Bob?“ Wiley, portrayed by Bill Murray, has a perfect storm of maladies including perhaps bacillophobia…
Oh My God — I Have ALS
The lyrics to “God Shuffled His Feet,” a song by the Canadian band Crash Test Dummies, portray God as indifferent to our struggles. When he speaks of someone perhaps having “some strange disease,” the people…
‘What’s Love Got to Do With It?’
“Without your love, I’d be nowhere at all. I’d be lost if not for you.” The inspiration for that Bob Dylan song is a mystery to the general public. However, the lyrics come close to capturing my indebtedness to…
ALS, Before and After
Author T. H. White‘s collection of novels titled “The Once and Future King” depicts the legend of King Arthur. While the title suggests a symmetrical before and after, in reality, it is rare that such a balance is observed.
Houston, We Have a Problem
The hubbub percolating around the SpaceX launch last weekend reminded me of the role a committed and engaged support team plays in averting and staving off peril. In any successful outcome to a human hostage confrontation, two common strategies unfold. First,…
A Typical Day in My Life With ALS
“Woke up, fell out of bed, dragged a comb across my head.” These are the first two lines of the bridge that Paul McCartney contributed to The Beatles’ song “A Day in the Life,” the…
The Monster That ALS Is
Donald Rumsfeld, the former U.S. Secretary of Defense, once stated at a Defense Department briefing in 2002 that, “There are known knowns. There are things we know that we know. There are known unknowns. That is to say, there are…
Recent Posts
- Honoring holiday traditions during and after life with ALS
- Specialists twice as fast as general neurologists at diagnosing ALS
- We need more help for ALS family caregivers in this country
- Study finds early-life events may be environmental risk factors for ALS
- How I made my own resilience checklist to live with ALS