Columns

Living with ALS certainly comes with many frustrations. For me, the one that challenges me most is a symptom I can’t hide: slowness. My body simply needs more time to move, eat, and speak than everyone else around me. In a world obsessed with speed — from 10-second commercials…

My husband, Todd, was asked about his health over the Thanksgiving weekend as we caught up with some old friends. He and I explained that his breathing has been declining recently, that ALS has taken most of his lung function, and he now has to eat with his…

So what happens now? All of a sudden, I was on my own, left to navigate my world, which had changed forever. I was restless, not quite knowing what to do with myself or how to fill my time. I’d just spent the last two years fully focused on my…

The inspiration for this week’s column comes from a reader’s simple question: “How many mini-exercise sessions do you do a day?” My quick reaction was to think I’d already written quite a bit on the topic of exercise and ALS, and I’d just send along a few links.

My late husband, Jeff, grew up in a family of seven kids. The oldest and youngest were girls, with five boys in between. Jeff was right in the middle, which, he liked to explain with a laugh, made him the most well-adjusted. While all the kids were close, Jeff’s best…

We’ve been searching for a used car for our daughter, who’s in college. It’s been an interesting distraction for my husband, Todd, and me, because our days are often mundane. Our daughter is busy with classes, work, and dance, but because Todd has ALS and I am his caregiver,…

I’m looking forward to several events coming my way this holiday season. Not that my social calendar is filled up. Right now, I only have a few family get-togethers scheduled, all at restaurants with scrumptious buffets. (Yay!) I’ve learned, however, that holiday activities mixed with my ALS can add…

I recently listened to an episode of Oprah’s podcast featuring Emma Heming Willis, whose husband, actor Bruce Willis, was diagnosed with frontotemporal dementia (FTD). She wrote a book called “The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path.” FTD and ALS are closely related: About…

When my late husband, Jeff, was diagnosed with ALS in the fall of 2018, I’d heard of the disease only peripherally. Like many, I’d completed the Ice Bucket Challenge in 2014 without an inkling that someday this disease would affect someone I loved. Swept up in the momentum…

I’m always on the lookout for strategies that will help me make my life with ALS go a little bit smoother, and I’ve recently found a new one. It’s easy to do and, most importantly, it adds a layer of calm to my days. It might surprise you when…