When my late husband, Jeff, was diagnosed with ALS in the fall of 2018, there were many unknowns. We didn’t know how fast or slow his progression would be. We didn’t know the course that ALS would take in his body, or when we would need interventions like a…
Columns
A few months after my husband Todd’s ALS diagnosis, we traveled with our children from our home in southeast Wisconsin to meet up with Todd’s sister and brother-in-law at a rented condo overlooking Lake Delton in Wisconsin Dells. We had recently returned from Mayo Clinic in Minnesota, where Todd…
The challenges of caregiving have been in the news lately. Last year, Dolly Parton appeared in a video following the death of her husband, Carl Dean, to quell rumors about her own poor health after the cancellation of some shows. She said, “Back when my husband, Carl, was very sick,…
A few months ago, my husband and I decided it was time to replace the mattress set we’d slept on for the past 10 years. Though originally high-quality, its firmness had faded to the point that our bodies left two permanent troughs where we snoozed each night. Who knew a…
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…
Recent Posts
- Personal preferences key to medically assisted death requests in ALS
- Being an ALS caregiver was as hard emotionally as it was physically
- Finding moments that transcend the grief of ALS
- Enrollment complete in Phase 2b trial of add-on therapy for adults with ALS
- ALS Nexus 2026: Event spotlights care advances, community goals