Joyful Sorrow - a Column by Kristin Neva

Sometimes people reach out to me or my husband, Todd, to get our advice on building an accessible home. We share with them what we’ve learned over the past 14 years with his ALS and progressive disability. After Todd was diagnosed, we realized that we’d need to sell…

Handling night care has been one of the hardest parts about managing ALS for my husband, Todd, but now I’m hopeful because he’s been training himself to sleep on his back. Todd has been a side sleeper, and for years he had to be turned from side to side…

It’s hard for me to get away from home because I’m the primary caregiver for my husband, Todd, who has ALS. But I try to take daily walks in the fields and woods around our house, because nature feeds my soul. Last weekend, I managed to go to the…

I’m thankful for the way technology is developing to improve the quality of life for people with ALS, including my husband, Todd. Six years ago, I encouraged Todd to bank his voice while it was still strong. He signed up with one service and went to work recording various…

I like the Maroon 5 song “Memories” because I’m soothed by the melody, borrowed from Johann Pachelbel’s Canon in D, and I’m moved by the lyrics. One line in particular resonates with me: “The memories bring back you.” Though my husband, Todd, is still with me,…

This morning, while my husband, Todd, was sleeping in the next room, I read a few chapters of Brian Jeansonne’s new memoir, “Onward Forward — My Journey with ALS,” in which he examines with vulnerability and insight his life with the disease. In Chapter 11, Jeansonne, a spiritual…

The other day I was using the brush hog on my tractor to mow a field when I noticed that the air conditioning wasn’t working. It was hot in the cab, but not unbearable, so I continued mowing, thinking I’d get it checked the next time I had the…

On a beautiful fall evening recently, my son had a junior varsity football game. I prepared to go by helping my husband, Todd, clear his lungs again in the bathroom, and then I set him up at his computer. He couldn’t go with me because he is paralyzed and…

A friend from a lifetime ago rolled down an accessible path leading to Lake Superior in my husband’s backup power wheelchair, and I experienced a sense of déjà vu after we turned down a boardwalk trail through the woods. My husband, Todd, was able to traverse this trail in McLain…

Committing to be out of the house is tricky because my husband, Todd, has ALS, making him paralyzed below the neck and requiring noninvasive ventilation. As long as his breathing is going well, I can run errands and attend events that aren’t more than 15 minutes away. Longer…