Walking the ALS tightrope between safety and independence

Moments of daily life with my husband Todd’s ALS frequently put both of us in panic mode. It makes me wonder if we should take more precautions — but there are trade-offs.

The other day, for example, food got stuck in Todd’s throat while I was feeding him chicken Alfredo. His eyes began to water, and he tried to cough. I held up his cup and he took a drink, but water didn’t help. I grabbed a granola bar from the pantry, and he took a bite. The chewy texture sometimes helps him get other food down. This seemed to provide him some relief, but then his nose filled with mucus, so I had to use a suction machine to clear his sinuses.

That particular stressful situation might’ve been avoided if we had eliminated even more food from his safe-to-eat list. He’s already given up mixed nuts, because almonds are too jagged and Brazil nuts and walnuts are too dry. He recently realized he could no longer eat beef jerky.

Five years ago, when his breathing was still strong enough to survive the procedure, Todd had prepared for the day he could no longer swallow by having a percutaneous endoscopic gastrostomy. Soon after, I started using his feeding tube to give him his medications and supplements, but we’ve held off on using it for nutrition because his quality of life is better when he can enjoy eating real food.

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As the disease progresses, we need to continually evaluate the risk of Todd eating particular types of food. Are the stressful, and potentially life-threatening, moments worth the pleasure he gets from it?

Likewise, we need to continually evaluate the risk of him driving his wheelchair with his head array. He operates his chair by using buttons on the sides of and behind his head, but his neck is so weak that he sometimes calls for me with panic in his voice.

“I can’t switch it out of drive,” he once told me as his chair was stopped just outside of his bedroom door.

I reached out and turned his head array off and then took over driving by using the attendant control. He wasn’t able to move his head over to turn the chair to the right, and he feared he would smash his feet on the doorframe if he had continued forward.

Todd wishes he could extend his wheelchair footrests so that his toes aren’t hanging over the front edge. We don’t know why the footrests are so short. Maybe it’s because wheelchair manufacturers assume people will wear shoes. But Todd isn’t comfortable in shoes, so that would be another trade-off.

Or we could avoid the risk of him crashing into something if I just used the attendant control to drive him everywhere, but that would mean another loss of independence for him.

I wondered if perhaps it was time to get eye-gaze technology that would allow him to drive the wheelchair, but according to a Permobil blog I found, their eye-gaze drive doesn’t allow a wheelchair user to adjust the seat position. If that information is still current, it’d be a different type of loss of independence, and possibly a more critical one. Todd adjusts his seat position more frequently than he drives from one place to another.

ALS is a disease of continual losses and trade-offs. We walk a tightrope between safety and independence, and caution and quality of life.

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