“My body looks the same, but it works differently now.” A friend told me that 30 years ago, following her abdominal surgery. I remember nodding to show compassion, while secretly thinking, “I haven’t a clue what she’s talking about.” Decades later, living with ALS, I finally understand. When I…
Three years after my husband, Todd, was diagnosed with ALS, I was learning how to live with the ongoing ache of grief. I found myself crying as I watched our then 7-year-old daughter, Sara, ice skate in her program’s spring show. She and the other girls were wearing sparkly…
When my late husband, Jeff, was diagnosed with ALS in 2018, I knew it would bring emotional challenges for both of us. I expected — correctly, as it turns out — that we’d feel scared, anxious, and sad. I recognized the immediate and lingering shock it brought in different…
Every step of an ALS journey is difficult, but somehow we’re wired with the ability to forget much of the pain and remember the good. I wrote last week about our current challenge of finding nighttime caregivers. After getting all of the shifts covered, one of our caregivers…
I’m always on the lookout for strategies to help my day-to-day life with ALS go more smoothly. Recently, I found a surprising spark of inspiration in a junk drawer in the kitchen. It wasn’t something hiding inside the drawer that helped; instead, it was my frustrating encounter with the…
“I feel like crying,” I wrote in my journal after a second caregiver decided to leave in December. “I can do 18 hours a day on duty, but I need to sleep sometimes.” For a few months, we had had a reliable team of nighttime caregivers for my husband,…
My recent holiday season was overall fun and festive. It did, however, offer a pointed lesson in living with ALS. It began one morning as I was getting ready for a special lunch with relatives. I sat on a folding chair, struggling to put on a sock, and from…
Dear Dagmar, I know the news is still fresh. There are so many things I want to tell you, but I’ll keep this letter focused. That’s mainly because I know being contacted by your future self can be startling enough, but added to that, being told you have ALS…
I feel a sense of accomplishment as this year ends. We made it. My husband, Todd, has hung on, with much effort to keep his lungs clear and filled with air, and we’ve kept persevering even as his ALS keeps progressing. Todd hasn’t had his breathing tested since December…
Every year, I make and sell Christmas wreaths. Much of my day is filled with caring for my husband, Todd, who has ALS, along with household tasks such as laundry, meals, dishes, and snow removal. But I often have a couple of hours each day — after I set…
