Author Archives: Rick Jobus

ALS Cannot Change Who I Am

“You just got lesson No. 1: Don’t think; it can only hurt the ball club.” That was the advice that Kevin Costner, who portrayed baseball player “Crash” Davis, dispensed to Tim Robbins, who portrayed rookie pitcher Ebby Calvin “Nuke” LaLoosh, in the 1988 film “Bull Durham.” Ordinarily, I opt…

Caregiving Is the Real Labor of Love

Love, according to the Bible’s First Epistle to the Corinthians 13:7, “always protects, always trusts, always hopes, always perseveres.” As Labor Day approaches in the U.S., it is fitting to honor the one occupation that, within the above context, may aptly be characterized as a labor of love. Thank God…

No Room for Pride when ALS Is Involved

“Humility is nothing but truth, and pride is nothing but lying.” ―St. Vincent de Paul I never knew the comical extent of my pride until ALS hit me. Prior to its impact on my life, I prided myself on my independence and the manner by which I presented myself to the…

All of These People Found Life After ALS

“You can either celebrate what you can do, or mourn what you can’t. Every day I wake up and create a new normal. I don’t dwell on what has changed, but instead, I focus on keeping busy achieving my goals.” –Augie Nieto II, fitness pioneer Nieto and I, independently,…

Let’s Get Physical: The ALS Exercise Debate

“Use it, or lose it.” That was the motivational summary statement during my first post-ALS diagnosis physical therapy (PT) session. As my condition’s horrific prognosis continued percolating in my brain, I replied, “Don’t you mean ‘use it, while you watch yourself lose it?’” There is an ongoing debate over whether…

A Picture Perfect Start to My Day?

“Be intent upon the perfection of the present day.” –William Law Today I experienced an uninterrupted utopia, recognizing that utopia may be a subjective, non-absolute concept, best expressed in the eye of the beholder. Allow me to describe what l beheld. It began with an unwanted, mildly disturbing occurrence. In…

To ‘B’ or Not to ‘B’?

That is the question. Vitamin B, that is. And any other nutritional supplement. Shortly after ALS crashed my party, I was introduced to the book “Eric Is Winning,” by Eric Edney. Edney was a long-term ALS survivor (over 20 years) who attributed his longevity to a regimen that included,…

Stumbling Upon an ALS-free Zone

“Hope is the thing with feathers” –Emily Dickinson Recently, my wife and I went to see a stand-up comedian at our local indoor stadium. My fervent hope was that our evening together would be a unifying, restorative one. It was in that spirit that we performed all of the mental and…

Right to Try vs. Right to Say No: An Open Letter to Lawmakers

Dear Congress, The recently enacted federal Right to Try Law (RTT) is really a “Right to Ask” law. And, for the pharmaceutical companies, it’s a “Right to Say No.” Which they certainly almost always will. Case in point: BrainStorm Cell Therapeutics pre-emptively announced that NurOwn, its ALS stem cell treatment candidate,…

Keeping the Faith

ALS has been a blessing to me. You read that right — a blessing. Oh, it has been many other things: ordeal, handicap, curse, millstone, scene-stealer, tormentor, humiliator, predator, interloper, income garnisher, bully, danger, satirist, infidel, and terrorist. It strives, ultimately, to be my terminator. But, if not for ALS,…