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.

On my birthday I had everything I wanted

A couple weeks ago, a friend asked me, “What are you going to do for your birthday?” “We’ll just have a family dinner and play games,” I said. “That’s all I want.” When my husband, Todd, and I were married, we might have gone on a weekend getaway or out…

Reminiscing about our pre-ALS days brings joy

A family friend visited last week, prompting a trip down memory lane to the days long before my husband, Todd, had ALS. My teenage daughter and her boyfriend sat on the couch behind us, while Todd, our friend Abby, and I sat around the kitchen table sharing memories…

Connections provide a sense of belonging in life with ALS

Eighteen years ago when expecting my daughter, I decided to become a stay-at-home mom. Mothering a newborn was a joyful season, but it was also exhausting and isolating. Another new mom in my community who’d experienced that same isolation after leaving the workforce started a family club that offered an…

We’ve developed a dark sense of humor living with ALS

When I took my son to the doctor for his sports physical, the nurse went through a checklist of health history questions. The exchange took an unexpected turn when she asked about my husband’s health. “Is Dad healthy?” “No. He has ALS.” The nurse glanced at her computer screen.