Columns

In the early, scary months after my late husband, Jeff, was diagnosed with ALS in the fall of 2018, I started to realize that I had no idea what we were up against. At almost 50 years old, I’d heard of ALS only through the Ice Bucket Challenge and…

When we got our goldendoodle, Comet, as a puppy almost 13 years ago, my husband, Todd, walked him around our property line to train him to stay close to home. After Todd became unsteady on his feet, he tooled around our yard on a scooter with Comet riding between his…

I’ll admit that there were times when I simply wanted to toss my ankle-foot orthoses (AFOs) into the trash bin and be done with them. In the early years after my ALS diagnosis, those braces represented one more massive change in my life that I had to learn to…

I brought “Some Bright Nowhere” by Ann Packer with me to Florida as my spring break beach read, but it wasn’t exactly light material. It’s a novel about a woman dying of cancer. Columnist Kristin Neva’s spring break beach read was “Some Bright Nowhere” by Ann Packer. (Photo by…

I originally planned to write this week about the small ways I’m maintaining my mobility and muscle strength while living with ALS. However, I waffled back and forth about whether this was a suitable topic. My hesitation wasn’t because my observations were unreliable, but because I worried readers might…

I left my husband, Todd, at home in Michigan last week while I flew with our teenage son to Florida during his spring break. Getting away takes planning and requires a lot of help at home while I’m gone. For me to be able to leave, we had to assemble…

Some days, my life with ALS feels like I’m trying to force a square peg into a round hole. On second thought, forget “some days” — I feel that way almost every day. There are the small irritations, such as having to wrestle with uncooperative Velcro on my…

When my husband Todd’s new power wheelchair was delivered, he tried a device that allowed him to control it with his eyes. It included software running on a tablet computer and an eye-tracking system mounted to the front of the chair. He found the system frustrating because he was…

My husband, Todd, and I work on New York Times puzzles while we eat breakfast. I sit next to him and feed him bites of his breakfast while I eat, too. One puzzle we work on is the Spelling Bee, where we earn points by forming words from seven different…

“Be like a duck: calm on the surface, but always paddling like the dickens underneath.” That was an ongoing joke shared among my fellow hospital department managers during my working years. It’s a quote often attributed to actor Michael Caine, and it perfectly represented our mindset: putting on…