Musings About the Language of ALS

During my professional years teaching wellness classes in a hospital environment, I had to be familiar with using medical jargon. Some words sounded odd to my nonmedical ears, while others had double meanings. A few favorites I still remember are “idiopathic,” which refers to something with an unknown cause, and “unremarkable,” which is used to describe something that is within normal limits.

Now that I’m living with ALS, I’ve had to learn new terminology, and I’ve been courageous enough to question why.

Are we progressing?

Shortly after I was diagnosed, I was eager to let my neurologist know how well the physical therapist’s home exercise routine was going for me. When the doctor walked into the exam room and asked how I was doing, I smiled broadly and exclaimed, “Great. In fact, I’m progressing!” From the serious look on her face, I immediately realized I had used the wrong choice of words.

During our discussion, I learned that “progressing” is a negative term and is usually used to describe ALS symptoms worsening.

“Well then, I’m improving,” I countered. But being a conservative, serious physician, she took the next few minutes to point out the reality of ALS. Citing the statistical expectation that ALS patients do not improve, she suggested that perhaps I had “plateaued.”

But the word “plateau” just didn’t sit well with me. So, I gave it a positive spin and proposed that “I am maintaining?” She agreed, and we moved on to other matters.

Survivorship

I have several friends who are cancer survivors. So, when I hit the milestone of living with ALS past the two-to-five-year life expectancy, I wondered if I could call myself an ALS survivor.

But when I asked at our ALS support group, I was told ALS survivors are family members who’ve lost a loved one to ALS. The unspoken implication is that all ALS patients die early.

“Well, what if I survive my family members?” I quipped. The leader didn’t have an answer.

Later at home, I did a quick internet search and learned that “the American Cancer Society uses the term cancer survivor to refer to anyone who has ever been diagnosed with cancer no matter where they are in the course of their disease.”

I think it’s a viewpoint that the ALS medical community should consider adopting as well.

Why? Because over the past few decades, ALS patients have been living much longer than the two-to-five-year prediction. Patients are taking steps to slow the progression of their symptoms with the help of more available treatments and improved assistive medical equipment.

The ALS Association has even updated its website to include the statement: “While the average survival time is three years, about 20 percent of people with ALS live five years, 10 percent will survive 10 years and 5 percent will live 20 years or longer.”

And then there are the patients who ‘don’t have ALS anymore’

Through his study of “ALS reversals,” Dr. Richard Bedlack, founder and director of Duke University’s ALS clinic, has identified 50 patients who had been diagnosed with ALS and now are symptom-free. Perhaps, are these the true ALS survivors? Although not all literally "reversed their disease.

The words we use

I believe that what we patients read, say, and tell ourselves matters. It can shape our beliefs and affect our attitudes, expectations, and even our physical health.

We can all help with the evolution of ALS medical jargon to include new ways of describing our health journeys. Let’s all become “unremarkable” patients, and hope the words “rehabilitation” and “recovery” will be added to every future ALS conversation.

Better yet, let’s live well in a world without any ALS.

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Dagmar Munn
ALS and Wellness Blog

Words matter. 

And the words that matter most are the ones you say to yourself.

David Taylor-Klaus

A version of this post first appeared as my column on the ALS News Today website.