Kristin Neva is an author, mother of two, and caregiver for her husband, Todd, who was diagnosed with ALS in 2010 when he was 39 years old. Knowing they would need family support, they moved to Upper Michigan and built an accessible home on property next to Kristin’s childhood home. Kristin enjoys spending time outdoors, especially on the shore of Lake Superior in the summer. Todd no longer has use of his limbs, but he stays active working on projects on his computer using adaptive technology. They try to find joy in the midst of sorrow as Todd’s health declines.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…
I had a bad cold last week and am still recovering from it. Apart from concern over my husband, Todd, catching it, because he has ALS, the hardest part was trying to keep up with his caregiving when I was fatigued and needed to rest. Something surprised me, though:…
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…
