Last week, my kids and I drove from Michigan’s Upper Peninsula to the Milwaukee area for spring break. I have many fond memories of living there with my husband, Todd, more than a decade ago, before he got ALS. It’s too difficult for him to travel now due to…
Joyful Sorrow - a Column by Kristin Neva
I recently connected with another spousal caregiver who wondered how I felt about life now that my husband, Todd, has had ALS for nearly 14 years. She’s just a few years into life with ALS, and her husband uses a power wheelchair and speech-generation technology and receives ventilation…
I recently came across a CNN opinion piece by writer s.e. smith titled “Jokes about disability aren’t taboo. But here’s who shouldn’t be telling them.” I read on, because my husband and I often use humor to deal with the difficulty of life with ALS, as Todd…
“I’ve noticed a decline in my mental health this week,” my husband, Todd, observed after a week of being quarantined in his office. Our daughter had a bad cold, and Todd hoped to avoid the bug that would have threatened his life. He rarely leaves our home, anyhow, but…
Our family had another close call recently that caused us to our reexamine our methods of emergency communication. Due to ALS, my husband, Todd, is completely paralyzed in all his limbs and has low lung function. He is dependent on noninvasive ventilation to breathe and to talk. Without…
A couple of weeks ago, I lined up a daytime caregiver for my husband, Todd, so I could take a day trip with our 14-year-old son to ski and snowboard. During the two-hour car ride, he introduced me to the “Bellied Up” podcast, a call-in advice show with comedians…
After years of living on the edge of life and death with my husband’s ALS, I sometimes wonder if my body has quit reacting to stress in a normal way. Trying to squeeze in lunch before I ran to town for our 18-year-old daughter’s doctor appointment, I reheated…
Last Friday night, I pulled a prescription bottle out of the cupboard, preparing to take my daily antidepressant — just one half-pill of the smallest dose, but that’s been enough to take the edge off and help me cope with the ongoing grief of living with my husband’s…
Since the point where my husband, Todd, needed a wheelchair because of his ALS progression, he’s had to navigate a less than perfectly accessible world. Todd is particularly challenged in our old community, which was built up long before the passage of the Americans with Disabilities Act in…
We often feel isolated now that my husband, Todd, is homebound because of ALS. He’s paralyzed with weak lung function, and it’s just too difficult for him to get out. So we were delighted when some friends planned a game night with us at our home last weekend. We…
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