Joyful Sorrow - a Column by Kristin Neva

My husband, Todd, was asked about his health over the Thanksgiving weekend as we caught up with some old friends. He and I explained that his breathing has been declining recently, that ALS has taken most of his lung function, and he now has to eat with his…

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 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…

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…

I wish I could shake the sadness I feel as my husband Todd’s caregiver after 15 years with ALS. There’s been a cloud over our lives since his diagnosis, even when his only physical symptom was a weak arm. Living with ALS has taken a toll on both…

Last week, my husband, Todd, celebrated his 55th birthday — a milestone we never anticipated after he was diagnosed with ALS at age 39 in June 2010. For his 40th birthday that October, I asked friends and family to send me pictures and their favorite memories with Todd, and…

“What do you think about having one thimbleberry design on one side of a mug and a different one on the other?” I asked my husband, Todd. We’d been brainstorming ideas for some print-on-demand items that I might try selling. Todd has had a fixed income ever since he was…

My frustration brought me to tears today, and I had to take a step back and remember to care for myself in addition to caring for my husband, Todd, who has ALS. Todd’s new wheelchair was delivered today, and like the one he’s been in for the past 11…

I caught up with an old friend last weekend. We were in a moms’ group when our now college-age children were just babies. She was visiting our small town because her son goes to college here. It’s hard to believe that we met nearly two decades ago — and harder…