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.

Revisiting Medicare’s Coverage of Home Healthcare

About a year ago, I wrote about how ALS patients may receive home healthcare on an uninterrupted basis, with expenses covered by Medicare. Since then, there has been both good news and bad news. The good news is that I recently “celebrated” my two-year anniversary of getting that coverage.

A Look at the ABCs of ALS During ALS Awareness Month

Awareness Breeds Compassion. Compassion Drives Enhanced Funding. Funding Generates Heightened Innovative Intervention Ideas. It all starts with awareness. May is ALS Awareness Month. It is not a coincidence that I chose three words beginning with the letter “I.” I believe that a single measure of awareness yields…

Breaking Even with ALS

A zero-sum game is a situation in which the accumulation of gain is accompanied by a sum of loss of equal value. The net result is always zero. From the get-go, ALS seeks to make that outcome an impossibility. It strives to force a plunging and irreversible deficit. In the…

How a Friend’s Strength Taught Me to Cope With ALS

“It’s hard to make predictions … especially about the future.” –Yogi Berra Gamblers and non-gaming speculators fervently seek out “sure things.” In the absence of that, both groups attempt to identify situations where probability weighs heavily in their favor. Some may conspire to unscrupulously influence the odds in…

The Mind’s Ability Knows No Bounds

“I think, therefore I am.” I have long been fascinated by that argument of philosopher Rene Descartes. Similarly, over a millennium earlier, St. Augustine wrote, “I make mistakes, therefore I am.” Both suggest that cognition — self-awareness in Descartes’ case, knowing right from wrong per St. Augustine —…

Rediscovering My Fountain of Youth

“Youth is wasted on the young.” That quote, often attributed to playwright George Bernard Shaw among others, may on the surface appear paradoxical. However, to me its meaning is clear. When we are young and in our physical prime, both the slate of options for physical…

My Pity Party Is Cancelled Indefinitely

“She put me through some changes, Lord, sort of like a Waring blender. Poor, poor, pitiful me. Poor, poor, pitiful me.” –Warren Zevon *** The other day while I was ruminating about the burdens that ALS imposes, a call of nature provided an intervention of…

When ALS Cuts In on the Dance

“If we’re treading on thin ice, then we might as well dance.” That is a line from a song, “Do It,” on Jesse Winchester’s second album, “Third Down, 110 to Go.” The album’s title depicts an impossible situation. The referenced lyric prescribes a nonchalant, if not joyful,…