Joyful Sorrow - a Column by Kristin Neva

patients, strength, bittersweet

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.

Searching for Markers on the Difficult Path of ALS

I followed the directions on my phone to the Lily Creek Nature Sanctuary in Michigan’s Upper Peninsula. The 40-acre forest preserve with maple, paper birch, and balsam fir is only five minutes from my home, but I’d never been there. I’d seen an advertisement for a hike and…

Staying Grounded in a New Year While Living With ALS

On Saturday afternoon, I was feeling apprehensive that 2023 would be an even harder year for my husband, Todd, and me than previous ones. Todd’s breathing continues to weaken due to ALS. The beginning of the year is often a time when people take stock of their lives;…

Why Dependency Is a Reality of Life With ALS

Dependency is a difficult reality of ALS. My husband, Todd, fought to preserve his independence as long as possible, but he lost each battle to progressive disability. When his legs became noticeably weak, he got a walking stick, and then a scooter, followed by a power wheelchair. He lost…