Columns

When my late husband, Craig, was diagnosed with ALS, we were very naïve and didn’t really know much about the disease. ALS has since been in the media more, so now people have more of an appreciation of what it means to have it. The only thing we knew…

My husband, Todd, and I celebrated our 23rd wedding anniversary this week. We’ve spent 16 of those years with ALS since Todd’s diagnosis in 2010. I’ve been thinking recently about how we have found meaning within this difficult life we’ve been living for so long. Todd and Kristin…

Nine years ago, and seven years into my husband Todd’s ALS journey, we were still trying our best to get out and have a normal life. That fall, our 8-year-old son came home from school with a flyer from a local church. They were hosting a Harvest Festival and…

While scrolling through social media the other day, I came across a question that stopped me in my tracks: How has having ALS impacted your life for the better? I scanned the replies and thought to myself, “It all depends on which chapter of my ALS journey you’re asking…

I’m writing this column from one of my favorite places with two of my most beloved people. It’s an overcast morning here at my little creek house on the eastern shore of Maryland, and I’m nestled in a rocking chair with a cup of black coffee, something I would’ve done…

I planned an end-of-summer trip to spend time with my daughter and friends near Milwaukee, Wisconsin, where my husband, Todd, and I lived when he was diagnosed with ALS 16 years ago. I needed time away from being constantly on duty. The trip also gave me a new perspective…

My husband, Todd, and I recently finished watching the NBC series “The Good Place,” a comedy that explores some of life’s big questions about meaning. In the season three finale, the character Eleanor Shellstrop searches for the answer that will make everything make sense as she tries to…

My brother and his family visited from out of town for a few days, so I planned a couple activities away from home and hired a caregiver for my husband, Todd, who has ALS and is paralyzed. Now that his neck is very weak and he needs noninvasive…

Even though I know my brain is in charge, there are days when my body seems to have a mind of its own. When that happens, I remind myself that my body is not the enemy. In fact, there is no enemy at all — just me, misunderstanding my…

Before my daughter, Marissa, was diagnosed with ALS in September 2022 at age 30, I was convinced that her symptoms could be attributed to anything except ALS. Denial made it hard to accept reality. Since then, my world has been turned upside down. Early in 2022, Marissa began experiencing…