Just before I drop off to La-La Land each Saturday night I try to come up with an idea for an ALS article for the next day that will help inform non-ALS patients to better understand the condition without sounding like I’m complaining about my plight.
Much as I hate to admit it, there are times when I must confess to harboring occasional jealousies watching people perform even the simplest of tasks that are no longer considerations for me; raising my hands, shaving, brushing my teeth, etc.
This past week I had a comment from one of past columns which went something like this; “Hey Dude, You wrote about ALS but you never explained what it is.”
So I went back and fact-checked my stories to see what the “Dude” (or “Dudette) was talking about.
172 Living with ALS articles later
This piece is the 172nd ALS column I have written since I began my personal quest to educate outsiders about the disease. It is known by many people as “Lou Gehrig’s Disease” because that is much easier to say and to remember than “amyotrophic lateral sclerosis” or ALS.
Though the popular New York Yankees first baseman was not the first person to be victimized. He was the best-known celebrity of his day to be diagnosed with ALS. To this day, Gehrig’s name sticks with the affliction as a way to generate awareness.
In the simplest of terms, ALS is a group of rare neurological diseases that mainly involve the nerve cells (neurons) responsible for controlling voluntary muscle movement. There is no cure yet and, following diagnosis, most people live about 2 to 5 years before they succumb to its deadly menace.
Over the three years of writing these articles, I have written several pieces about Lou Gehrig, including one just last week. But in case you have overlooked my various explanations, there’s another resource for information about ALS, Dude. It’s called the internet. Perhaps you’ve heard of it.
All it takes is three simple keystrokes, ALS, and BAM, you’re there.
The heterogeneity of Amyotrophic Lateral Sclerosis – ALS
Later in the week, I came across something called the “heterogeneity of ALS.”
I pride myself on having at least a slightly bigger vocabulary than “Run, Jane, run. See Dick play.” But I have to admit that even if I knew what “heterogeneity” meant, there was no way I would ever work that word into a sentence.
After all, as mentioned above, we use ALS to simplify “amyotrophic lateral sclerosis. That immediately sent me to visit Mr. Webster for some synonyms which provided me with; diverseness, heterogeneousness, manifoldness, multifariousness, and multiplicity among others.
Not exactly stimulating reading. More like a cure for insomnia or reading “George Will Rewrites Dr. Seuss.”
My next option was trying to find actual sentences. I found two, each of which I read three times before I could understand them. It didn’t matter much because even after my comprehension kicked in they were still boring.
Example #1: “He is particularly pleased with the decreasing dispersion in growth rates between countries, and declining heterogeneity of borrowing rates.” — WSJ, “ECB’s March Policy Decision: Bank Keeps Rates Unchanged,” 9 Mar. 2017
Example #2: “While not as diverse or accessible as public spaces, third places rely on a certain amount of heterogeneity to convey social importance and bring vitality.— Setha Low, The Conversation, “How cafes, bars, gyms, barbershops and other ‘third places’ create our social fabric,” 1 May 2020
Which brings us full circle back to the ALS sentence which began my search:
“You cannot even turn to a fellow sufferer for a reliable rendering of what to expect (with ALS). The heterogeneity of ALS precludes that. What one has experienced does not fully translate into a meaningful fortunetelling for anyone else.”
One of the most difficult aspects for ALS patients to deal with is its inconsistencies.
When I went to my first ALS clinic I walked in, looked around, and found it to be eye-opening. There sat a wide array of power wheelchairs crammed into the waiting room. A year later, I was still walking. Today, four years into the ordeal I, too, contribute to the motorized rolling stock that clutters the lobby.
Recently read about a woman who is working on her 10th year with ALS as she described how she continues to adapt to her rollator. The woman was diagnosed five years before me, yet she continues to walk. Granted she has assistance but nevertheless she travels under her own power.
ALS has no definitive playbook. We live, we learn and we share, but in the end, it is only the patient and their caregiver(s) who can determine the best personal course of action.
As for heterogeneity, I used the word so many times in this story, that now I can even spell it, Dude.