May 2024
The smallest room in your home is the most dangerous -- About 235,000 people visit emergency rooms for injuries sustained in the bathroom each year. So if you're a thrill-seeker with ALS like me, the bathroom may soon become your favorite place too!
Speaking of danger, according to the Bureau of Labor Statistics, the three highest-risk jobs in America are logging, roofing, and washing me in the shower. Additionally, their average salaries are below the mean annual wage, but unless someone can put a price on eternal gratitude, my wife’s $0/year salary may have skewed those calculations. Her lingering in the shower with me brings a fivefold increase in injury resulting from shaky romantic interludes, a risk typically not encountered while roofing. Jeff and Jim, the two sturdy young firemen who rescue me from those slow, slippery slides onto the tiled floor, are now considered part of the family and, as such, receive holiday-themed ear muffs.
For baths, one can be slowly submerged in a tub with a winch, but a launch of this sort traditionally demands that a bottle of champagne be broken over my forehead, a dealbreaker for my wife.
We tried applying two valuable techniques my wife had learned in business school to help navigate my pee schedule. Toyota’s Just-In-Time manufacturing seemed ideal, as it avoids waste and overproduction, leading to better flow. A rereading of the textbook revealed that the goal is better cash flow, which explained the Not-In-Time rest stops on my way to the bathroom. Luckily, my wife learned to change my pants faster than a Formula 1 pit crew can change tires.
Also, any business student knows that the last mile is the final and most complicated phase of delivery logistics. Like an old horse that suddenly bolts when the stable comes into view, I find it difficult to contain my excitement the last foot from the toilet. But finding someone willing to take me just the final few steps proved difficult, and averting my eyes from the toilet only further slowed my already sluggish walk to the bathroom. (Have I mentioned my wife's prowess in changing pants?) The solution ultimately lay beyond the arid lecture halls of business schools and was much simpler -- Prophylactic Peeing, more commonly known around here as the Pre-Pee.
But the real heart-stopping danger in bathrooms for all of us with ALS isn't from falls on wet floors and visits to the emergency room. It’s inside our medicine cabinets – now a warehouse for withdrawn or marginally effective drugs, each one bleakly marking yet another hope deferred.
Not that I would ever snoop in your medicine cabinet.
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The mortal coil shuffle
April 2024
Last month I wrote about two questionnaires repeatedly given to participants in ALS drug trials and gave this advice about a third: Don't joke around with the Columbia-Suicide Severity Rating Scale.
I’ve never taken life’s large events too seriously—not marriage, family, or career—and have had some success at each, so why shouldn't I take life’s large last one with the same lack of sobriety? I’ll admit this may be a minority opinion. Consider this a gentle warning for the frivolity that follows.
Despite a terminal illness, I don't spend time thinking about suicide, although my exasperating behavior has long induced these thoughts in friends and family and even been wished upon me by total strangers, usually while driving. But the Columbia-Suicide Severity Rating Scale made me think about it a lot. This breath of fetid air blown in from Bethesda was mandated by the FDA for all clinical trials after an antidepressant was found, postapproval, to cause suicidal thinking. However, planning an exit strategy for ALS is usually not a sign of deep depression, but pure pragmatism.
After several clinic visits, I finally declined to answer that questionnaire and was told if I wished to continue the drug trial, I had to respond. And so I did:
“Have you planned out how you would do it?”
“I’m nothing if not a planner.”
“What was your plan?”
“Go to Michael's party store... Would that be a red flag for you?”
“Excuse me...?”
“The helium in tanks bought to fill balloons was once used to end lives, but now all commercially available helium tanks contain enough air to render them unfit for anything other than celebratory occasions, which brings us to red flags and 9/11 hijackers.”
My interviewer moved to the very edge of the chair, her feet flat on the floor as if she were about to leave. I knew she wouldn't—the FDA needed my answers.
“The 9/11 terrorists wanted to learn how to take off, not land a jet -- clearly a red flag. I imagine red flags were flying at party stores when customers in wheelchairs sought helium tanks, but no balloons”:
“Excuse me, where are your helium tanks?”
“Aisle 3... but balloons are in Aisle 6.”
“Don't need ‘em...In fact, their presence would be highly inappropriate.”
When we returned to the actual questionnaire, I disclosed that I’d begun hoarding prescribed opioids soon after my diagnosis, in the same way one carries an umbrella to ensure a bright blue sky. I plan on these drugs expiring well before I do.
Despite these assurances, once I invoked the ‘s’ word, it triggered an immediate visit from my neurologist, who luckily knows me better than the FDA does.
ALS, of course, is a competent killing machine on its own and needs no human assistance. Years before my diagnosis, my wife and I often made dinner for a dear friend living with ALS. One evening at the table, she asked if I would help “when the time came.” I readily agreed and, although my aid was ultimately unnecessary, I remember showing her a scene from a Marx Brothers movie that I knew she’d greatly appreciate:
CHICO:
I'd do anything for money.
I'd kill somebody for money.
I'd kill you for money.
[Harpo looks dejected]
No...You're my friend.
I'd kill you for free.
[Harpo smiles]
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March 2024
I continue to receive concerned queries about my health despite doing my best to discourage them by rudely replying, “How much do you want to know?” or “You can't handle the truth.”
My favorite response remains the one that quickly moves conversations anywhere else: “I’m like the man plummeting from a skyscraper who says as he passes each floor, ‘So far, so good.’”
I’ve never had so many people intent on asking questions about my health as when I participated in a clinical trial last year, each answer then recorded in a distressingly thick three-ring binder. But with some wishful thinking and an elastic sense of language, many of my responses could miraculously slow or even reverse the implacable progression of ALS, at least on paper.
I’ve already written about one such questionnaire,* the ALS Functional Rating Scale (ALS FRS-R), and the lengths one might go to avoid a loss in function. For example, the inability to use a knife is a point loss, so I slice food with a fearsome scimitar-like blade developed in the 13th century for Mongol invaders with ALS. I still avoid leeks, which are fibrous and difficult to cut, as I refuse to lose points over a vegetable.
A newer tool, the Rasch Overall ALS Disability Scale (ROADS), is said to improve tracking of symptom changes by asking subjects to rate their ability to perform a larger number of tasks as either normal, done with difficulty, or not at all.
This seems reasonable, but what if the task were the ability to speak for hours (Q20)? I'm not a filibustering senator or acting in a play by Eugene O'Neill, yet I could easily complete this task. In fact, my wife often asks if I ever tire of hearing my own voice. And despite ALS, I never do!
I also responded that I can speak in a noisy room without difficulty (Q19), as I’ve always been called a loudmouth. My interviewer gently inquired if that might be more a matter of content than volume.
I refused to answer several questions for painful personal reasons -- climbing a stepstool (Q24), for example. I haven’t used one since 1983, when I received a 3:00 am call from my dad that began with, “Aunt Lucille put a stepstool on top of the mahjong table to kill a spider and....”
My responses to a third questionnaire prompted an immediate visit from my neurologist, communications to the independent drug monitors, and possibly alarms sounding throughout the halls at the FDA in Maryland.
But you'll have to wait until next month to hear more. For now, here's some advice: Don't joke when taking the Columbia-Suicide Severity Rating Scale.
*See Confessions of a recovering ALSFRS–R addict. November 2022
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