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.

Why it’s vital for caregivers to set boundaries

My 13-year-old son and I started mountain biking a few summers ago during the pandemic. He quickly became a much more aggressive biker than me, tackling jumps and getting air while I try to keep my tires on the ground. He easily outpaces me, often waiting at trail…

Improving my husband’s comfort feels like a win

Ever since my husband Todd’s ALS led to his paralysis, it has been hard for him to get comfortable. This is especially true now that he wears a mask nearly 24/7 for noninvasive ventilation support. For years, I’ve jumped into action when he calls me to swat a…

The ways music has comforted us while living with ALS

A friend who visited Mayo Clinic in Rochester, Minnesota, for a serious health issue posted a video on social media of a string quartet playing in the towering glass atrium of the Gonda Building there. It brought back memories of when my husband, Todd, and I went to Mayo for…