Mirror, Mirror on the Wall, What’s the Fairest Resolution of Them All?

Rick Jobus avatar

by Rick Jobus |

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“Mirror in the bathroom

Please talk free

The door is locked

Just you and me.”

The time for annual resolutions to be implemented has arrived. The most impactful betterment plans arise from an honestly objective self-review. What more appropriate figurative venue to stage that introspective intervention than “Mirror in the Bathroom,” as depicted by ska band The English Beat?

Each year, I attempt to capture a year-end snapshot of myself. I reflect back on the prior 12 months for insight regarding the good, the bad, and the ugly. I seek to identify cause-and-effect factors that will frame my resolve in the new year. 

Not unexpectedly, the result is always a mixed bag. Some areas scream for an overhaul, some are fine going forward, and occasionally one emerges as an asset to be emphasized. In that spirit, I again take stock.

Except for ALS, I ended the year in robust health. Regular feedback regarding heart rate, blood pressure, blood oxygen level, and weight are all affirming. I take no maintenance prescription medications.

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We Must Rely on Our Resilience

That tells me that my daily routine of food, dietary supplements, passive exercise, and deep — albeit, relative to my shallow maximum — breathing can justifiably continue. Of course, I’ll keep an ear to the ground for any research-based, or anecdotally reported, inspiration to consider modifying my regimen. But for now, the status quo is appropriate.

In contrast, my response to ALS’s incessant advances begs for a “Shark Tank”-like rethink. In particular, two elements of my anti-ALS effort are obvious loss leaders.

I have fretted over and groused about my eroding verbal skills for years now. Failing to take any action has now rendered me an incommunicado mute. I find myself the equivalent of Marcel Marceau without animated gestures, or Harpo Marx without props. Having already hatched a scheme to avail myself of eye gaze-activated speech-generation technology, my 2022 resolution is to become the Daniel Webster of robotalk. 

The other noteworthy gaping sinkhole of my 2021 existence could have been anticipated with just a smidgen of foresight. As this is being written, I have yet another painful, foul, secreting, open cesspool festering on my leg. Like the infected wound of more than a year ago, it began as an annoying, occasional irritant, brought on by the perfect storm of friction, pressure, and immobility. Lack of attention allowed it to spiral out of control.

A resolution, and a welcome observation

In the new year and beyond, I pledge to be proactive. To forestall pressure sore development, protective boots will be worn, and my legs will be repositioned daily. I will also instruct my aides to inspect my legs, back, and buttocks — again, each day — for the faintest hint of discoloration. An antiseptic healing cream will be at the ready for early prophylactic treatment. Additionally, a wound care doctor and nurse are now members of my ALS rolodex.

Although it’s just me and the bathroom mirror behind closed doors, external input is welcome, as I attempt to put my best “Auld Lang Syne” (ironically, with the initials ALS) foot forward. Unsolicited feedback is often the most candid, and potentially beneficial. On one hand, it can painfully illustrate troubling differences in public and self-image. Conversely, it can gratifyingly highlight an unwitting collateral strength. This past Saturday, a pleasant, serendipitous critique — of the latter variety — sprang from an unlikely source.

Since switching home health agencies this summer, I’ve been tended to by a dizzying array of aides. Owing to demand outweighing supply, exacerbated by COVID-19 and tourist season in Florida, scheduling anomalies have become the norm. As a result, my “regular” Saturday aide has only cared for me six times.

Despite the many fits and starts brought on by seeking to cultivate a routine in the midst of a decidedly nonroutine set of challenges, a “normalcy” of sorts has been achieved. All it took was repeated viewings of a YouTube video demonstrating my uncommon transfer lift, frequent amendments to my enumerated to-do list, and the comic misadventure of my attempts to offer spoken guidance. That serpentine process left scant opportunity for rapport-building.

However, our interactions did make my garbled “Mary, thank you for everything” decipherable, prior to her departure last Saturday. Surprisingly, she responded, “No, it’s me who needs to thank you.” Correctly reading the puzzled expression on my face, she decided to elaborate.

She admitted that she had been struggling with her faith. She went on to explain that the strength of my faith was obvious. Her conclusion was that if faith could thrive in my circumstances, she had to reenergize her own. It was a behavioral confirmation of the highest order.

Consequently, beyond continuing my nutrition and exercise strategy, and shoring up two glaring shortcomings, I will double down on God.

Happy New Year!

***

Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to ALS.

Comments

Trevor Bower avatar

Trevor Bower

Thank you for your very inciteful column. Every day for me isn't an adventure anymore. I'm just glad to be able to get out of bed and take care of my daily routines solo. I keep wondering what is next? I'm just getting over the mysterious leg ulcers. Where did they come from? I must say I did have a wonderful visiting nurse twice each week until the open festering sores were gone. Her humor and advice were something I looked forward to each visit. I wonder if there is a manual, a guide book, a map to allow us to look ahead beyond each stop sign and bend in the road? As it is now it is like driving down the road into a fog bank not knowing how soon we may reach a dead end or find a new crossroad option taking me out of the fog to a bright sun shine filled day.

Reply
Rick Jobus avatar

Rick Jobus

Trevor, If you ever find the "magic" manual, please remember to secure a copy for me.

Jan Jeffreys avatar

Jan Jeffreys

You are truly a gifted writer and connecting your story to music is not only clever. but just so creative. In my opinion, your writings are entertaining, the highlight of this forum and definitely of this ALS site!!!

With that said, I have three questions for you Rick:

1- "no maintenance prescription meds", please explain. Does no, mean no ALS meds ???
I was diagnosed one year ago, so Riluzole 2x daily plus Radacava for the last five months.

2- What is your "daily routine of food" ? I totally lost my voice and eating is an extreme challenge:... my blender has become my friend!

3- "Dietary supplements", please share what are they?

I look forward to your answers.

"And there's a hand my trusty friend and here's a hand o' mine"

From an X-Milwaukeean to an X-Chi-town neighbor"

Reply
Rick Jobus avatar

Rick Jobus

Jan, thank you for the kind words. To answer your questions:

1) No medications whatsoever. I took riluzole years ago, until it was cost prohibitive.

2) My diet is:
A.M. Breakfast sandwich, eaten layer-by-layer
Midday Soft fruit – bananas/mangos
P.M. fish/turkey/chicken/ground beef (finely cut), soft veggies, mashed potatoes, guacamole, and pudding

3) My supplements are:
Via spray
Vitamin B12
Vitamin D3/K2
Glutathione
Fulvic Acid
Advanced Prostrate
Multi-Vitamin blend

Via capsule
Theracurmin
MitoQ antioxidant
Cranberry extract

Via liquid
Protein

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