Minding My Manners: ALS and Etiquette

“Manners are a sensitive awareness of the feelings of others. If you have that awareness, you have good manners, no matter what fork you use.” ―Emily Post

In case we ever meet, I want to apologize in advance if I ever appear insensitive to, or unaware of, your feelings. That is absolutely not the case. In fact, if anything, ALS has made me hyper-perceptive as to how my circumstances affect those I interact with. Please allow me to prepare you, as best I can.

If our encounter is conversation only, there are certain realities I cannot avoid. I can no longer speak well. Put another way, I am often unintelligible. Be assured that my slurred and labored attempts at speech are not evidence of me disrespecting your arrival by consuming alcohol beforehand.

I suffer from ALS-related dysarthria. Dysarthria is when muscle weakness causes changes in speech. It interferes with the ability to:

• Produce clear sounds (articulate).
• Control the quality of the sound (timber) or what your voice sounds like.
• Maintain the natural rhythm of speech (prosody), which helps others understand the person’s intended message.

What you hear is the best that I can do. No amount of you talking more loudly or slowly will change that. If you politely pretend to understand me, the chances are that I will detect it immediately, as your response will likely not be in context with what I am striving to convey. If you sympathetically attempt to finish my sentence and are incorrect, it prompts me to start over.

Either scenario is a source of potential consternation for me. Should any outward sign of frustration be on display from me, it is with myself, never with you. Please keep that in mind. Better yet, to proactively disarm my ill-mannered inner child, perhaps consider a “grin and bear it” approach. Eventually, we’ll find a way of translating my utterances. We may even invent a new word or two.

Dysarthria also manifests through the diaphragm, where weakness makes drawing an adequate breath to speak difficult. This results in an erratic, often decreased, speech volume. Adding proverbial “insult to injury” are the unpredictable moments when words come out more forcefully than expected. Casual onlookers and folks not accustomed to my communication limitations often mistake these outbursts for expressions of anger. They rarely are. As luck would have it, words that are easier for me to pronounce are most susceptible to the decibel emphasis. When I say “no” to the uninitiated, it can conjure up images of a “terrible twos” temper tantrum.

Since the same muscles used for speaking are used for eating and drinking, almost everyone with ALS will eventually also experience problems with swallowing. A secondary outcome of impaired swallowing is excess saliva in the mouth. The disease does not cause the overproduction of saliva, as people often think, but instead prevents the regular swallowing of it. Consequently, there are times when you address me that my mouth will be full of saliva. Then my choice is to respond and drool, or wait and appear to ignore you rudely. I judge drooling to be the greater social offense, so at times, I will not spontaneously answer you.

If our meeting overlaps into a shared repast, swallowing challenges also govern my mealtime behavior. Given the ALS-induced weakness in my lips, tongue, soft palate, pharynx (the muscles in the throat that squeeze foods through to the esophagus), and the larynx (the upper part of the airway that needs to close quickly to prevent choking), eating and drinking safely is a constant concern. Precautionary methods involve staring straight ahead while refraining from any dialogue or (worse yet) laughter until all remnants of the mouthful have passed. This may encompass several minutes for a particular bite. Worst case (thankfully rarely), I have no choice but to invoke a Dr. Seuss-like idiom: When in doubt, spit it out.

Since my facial muscles are a mixed bag, ranging from slightly to mostly functional, my countenance may appear, without provocation, comatose, comedic, or alarming. In extreme moments, if frozen, my expression resembles a macabre character that Edgar Allan Poe would have pride of authorship over.

With all that said, if you can tolerate my B-side version of “The Picture of Dorian Gray” and other elements of the “theatre of the absurd” ALS carny show, I’ll be delighted. And at the very least, you can be forewarned and forearmed for the experience.

Oh, one more thing: I’ll definitely use the wrong fork. Owing to a decline in fine motor skills and manual dexterity, my dining implement of choice is a fat, rubber-handled utensil bent at a 45-degree angle.

Again, my apologies.

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