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.

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…

Our Date Night Movie Hit Too Close to Home

Last weekend, my husband, Todd, and I watched the movie “The Electrical Life of Louis Wain,” about an eccentric artist in Victorian England. Wain’s comical and endearing illustrations of cats changed people’s perceptions of them and led to them being more accepted as household pets. From the description,…