ALS and Wellness Blog: When things go right: My week living with ALS

Last week was good; nothing bad happened to me. Not that I was expecting bad things to happen, but as someone who lives with ALS, I feel pretty darn successful whenever I can look back and note that things went well.

I know, I know: Writing about a calm, boring, nothing-bad-happened week is not the norm. The traditional advice about writing a blog about ALS like mine recommends that I first identify a problem and then offer tips on how to solve it. Through the years, I’ve tackled many ALS-related problems, such as navigating badly designed accessible restrooms, dealing with others who don’t understand what ALS is, and strategizing to cope with challenging days.

But last week, rather than noticing what was going wrong, I decided instead to pay attention to what was going right. And something went right: My gluteus medius muscle, directly above the hip, finally made an appearance.

The backstory

At an ALS clinic visit, the physical therapist recommended home exercises to strengthen my right-side gluteus medius muscle and improve my uneven walking gait. Of the numerous exercises suggested, the only two I could do, given my balance problems when standing, were side-lying leg raises and clamshells.

Even though I’d been doing them religiously for the past several years (really!) the area remained weak and I still had a noticeable “hitch” when I walked. Then one day last week, I felt the muscle kicking in! It was what I call an “I hear more voices in the choir” moment. Let me explain.

Before ALS, I imagined I had a full choir of leg muscles that moved me through my day. Now, my ALS symptoms have me relying on fewer and less coordinated muscles. My new vision is of a small a cappella group bravely singing a song.

But when I felt that gluteus medius finally working, my a cappella group grew to a choir - - with music. Granted, some days my leg and hip muscles went back to being a small a cappella group, and on other days I had the choir with music. It didn’t matter to me, because when things went right, I felt happy. I appreciated the moment.

Seeing the glass half-full

So many of us who live with ALS expect things to go wrong and focus on the negative. Our language is peppered with statements such as “It’s just one thing after another” or “I’m waiting for the other shoe to drop.” We expect problems, then declare “See!” when they happen.

I challenge you to spend a week, or a day, only noticing the things around you that are going right. Challenges or problems may happen, but in between are the moments or even hours of calm. Notice that. Pay attention to how you’re feeling, acknowledge the nonevent, and appreciate the opportunity to feel unruffled and composed.

And then - - tell someone else about the positives in your life. Research shows that telling others about personal positive events increases our sense of well-being, especially when those you tell respond enthusiastically.

It’s a win-win situation. You’ll brighten their day, and it’s one more way we can learn to live well with ALS.

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