My ‘Go-along’ Adventures Add Humor to Life With ALS

I use many strategies to keep myself engaged in life and avoid getting pulled down mentally by my ALS. Being a “go-along” is one of those strategies, and it’s a perfect partner to showing up.

But being a go-along — that is, accompanying my husband on his various errands — doesn’t make me feel like I’m just a bump on a log. Rather, I’ve learned quite a lot during our outings together. Plus, I’m helpful — sort of.

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Talking boxes

One habit left over from the pandemic is regularly visiting the drive-thru lane to order a meal. Another leftover is the dreaded malfunctioning speaker. My husband doesn’t have much patience for fast-talking order takers and scratchy speakers, so he ends up turning to me and asking, “What did they say?”

Only my version of what they said, speaking with my ALS-affected voice, is often even more garbled and slurred — so much that we’re reduced to giddy laughter, leaving the order taker on the other side of the box wondering if we’re just a couple of rowdy teenagers out for a good time.

I’m a people-watcher

Usually, my go-along adventures involve me waiting in our van while my husband pops into a store. Rather than spend my waiting time hunched over a cellphone, I prefer to observe my surroundings and the people walking by. OK, OK, I’m not a stalker, but people-watching helps me when I’m dealing with the challenges of living with ALS.

For instance, there was the time when I was adjusting to wearing ankle-foot orthoses (AFOs) while depending on a rollator to help me walk. From my parking lot view, I was surprised at the number of people who walked with a limp, a hitch in their step, or a slight lean to one side. I even spotted a few people using rollators and wearing AFOs. That helped me realize I’m not the only one with walking issues. I’m not alone in facing challenges.

Dogs in cars

One time, we had to make a quick stop at one of those gas-and-go convenience stores. While I waited, I rolled my window halfway down and began checking out the cars parked on either side of our van. I immediately noticed that the heads of those in the nearby cars were actually large dogs awaiting their owner’s return. Whenever a customer left the store and darted a little too close to one of the cars with a dog, loud barks and angry growls poured out of their half-open windows. It worked. Customers gave those cars a wide berth.

On the way home, as I shared the experience with my husband, a fun idea popped into my head. The next time I had to wait alone in the van, my husband asked, “Will you be OK?” as he got out. “Yup,” I replied, “just roll the window halfway down and if anyone gets too close, I’ll just bark.” We shared a laugh, and “I’ll just bark” has become our “I’ll be OK” catchphrase ever since.

For me, living well with ALS means changing my perspective, learning to adapt, and having a sense of humor. Try it for yourself. Together, we can help each other learn how to live with ALS.

Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.