Editor's Note

Call It Courage

I can tell how difficult a story is to write by the number of times I jump up in the middle of it and take a lap around the office to clear my head.

As I wrote this month’s cover story on ALS, I just about wore out the carpet with my walking. Heck, I had to rewrite this column twice.

I know it’s ignorant and useless to say one medical condition is “better” or “worse” than another, and that’s not my intent. But ALS — with its extreme, progressive loss of muscle control, lack of predictability and terribly short timeline — seems unbearably and especially cruel.

Among our experts speaking on ALS in this issue is Alisa Brownlee, ATP, the national assistive technology consultant to the national ALS Association (ALSA) office. Alisa hears about developments around the country, as reported by 46 ALSA-affiliated clinics (e-mail Alisa at abrownlee@alsa-national.org if you need help finding a clinic near you or your client). There wasn’t enough room to include everything I learned from Alisa, so here are a few snippets I had to leave out of the story:

  • For reasons not yet clear, many ALS patients also test positive for Lyme Disease. Understandably, many patients cling to the possibility that they have Lyme Disease, not ALS, potentially slowing the process of finalizing a diagnosis and providing appropriate assistive technology.
  • Not yet documented by research, but being reported by ALS clinics: a type of ALS dubbed “rapid progression,” whose patients are declining in three to six months. Also unknown: Why this form of ALS is happening among younger men, including those in their 20s.
  • ALS’ quick progression is well known, but I was unaware that other timelines existed, too — for instance, the window for a patient to acquire a feeding tube to fight off weight loss. Once respiratory compromise makes it impossible for ALS patients to safely lie fl at for the surgical procedure, many surgeons won’t dare insert a feeding tube.

I’d always thought ALS was a relatively straightforward condition with a predictable course. In reality, ALS seems almost whimsical in how patients are first affected and how they progress. For instance, Alisa said people with the “bibrachial” form of ALS “can walk, but literally they have no arm function. If they were to trip, they would have no ability to catch themselves. Arm swing is a part of the gait cycle; you move your arm and trunk in opposition to your opposite leg for postural stability and balance. There is no question that (bibrachial patients) do not have the postural stability to ambulate, and they will lose their balance because they don’t have the opposing weight shift.”

ALS is so intimidating in its presentation and progression that even funding sources — at least the larger and better-established ones — argue relatively rarely when power positioning features show up on ALS patients’ claims, though Alisa says more education still needs to get out to payors.

ALS is emotionally devastating for patients and their families, but I also wondered about its toll on providers. John Calcavecchia is an ATG Rehab ATP who works largely with ALS clients. I asked what he found rewarding in working with this patient population.

He thought a moment, then said, “At one time as a therapist, I used to treat workers’ comp and see people improve and walk out the door: ‘John, you’re the best, I feel great, I’m going to go out and play racquetball again.’ With (the ALS) population, there’s an end game, and it’s not a good one. My goals are very simple. What makes me happy is when I see, one, they’re comfortable in their chair, and two, they’re independent and they’re trying to do as much as they can without feeling like a burden to anyone else. We’re not providing a drug that cures it. We’re trying to make these days that you have left on earth comfortable and independent… and free to do whatever you want.”

In To Kill a Mockingbird, Atticus Finch explains to his young son what courage is: “It’s when you know you’re licked before you begin, but you begin anyway and you see it through no matter what.” That seems an apt metaphor for what patients, caregivers, families, clinicians and providers are called upon to do when the diagnosis is ALS.

This article originally appeared in the May 2010 issue of Mobility Management.

About the Author

Laurie Watanabe is the editor of Mobility Management. She can be reached at lwatanabe@1105media.com.

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