Columns

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…

After my husband, Todd, was diagnosed with ALS, I was shattered and desperate to connect with others who might understand the pain I was feeling. I searched online for a local grief group and found one that met at a nearby church. But when I called to ask about…

I’ve been helping my husband, Todd, ever since he was diagnosed with ALS more than 15 years ago. It started with me buttoning his dress shirts before he went to work, and then I helped him shave. Eventually, he needed my help with eating, toileting, showering, scratching itches, adjusting…

During the first year after my ALS diagnosis, I was overwhelmed by the physical changes I was experiencing as I learned to eat, move, and speak in new ways. One of the most significant developments was the impact ALS had on my perception of time. It was as if…