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.

I Hate the Feeling of Knowing What’s Coming

I pleaded. I bargained. I threatened. But it was no use. My dog would not back away from the woods behind the shed, where he had been sprayed by a skunk just two weeks earlier. I was more panicked when he got skunked than I was now. I frantically searched…

Building a Care Team for the Marathon of ALS

Help has come and gone over the past decade since my husband, Todd, has had ALS. When it became too difficult to travel four hours away to an ALS clinic, Todd went to a local neurologist who managed his care. After a couple years, his neurologist left the area, and…

When Anger Manifests as Road Rage

Driving in our small town is usually pretty chill. People let each other in and don’t cut one another off. But right now, the roads are busier than normal. It’s construction season, and we have many out-of-town tourists. People come from big cities, where they live with more stress and…

A Taste of the Past

When my husband, Todd, was diagnosed with ALS, I grieved the loss of our dreams and our future together, but I had no idea how hard daily life would become. ALS caregiving spouses end up taking on a lot of roles. We advocate for resources and battle insurance companies.

The Many Challenges of Getting Out

Normally, we live much of our life at home. My husband, Todd, has ALS and is paralyzed. He spends his time in his wheelchair set up at his computer, and I can’t go far in case he needs help. Our traveling days are over, and we can’t visit most…

Time Travel With ALS: What If We Could?

I’ve been thinking about time travel after watching a couple movies with my husband, Todd, who has ALS. We enjoyed “About Time” during one of our date nights and “The Time Traveler’s Wife” during another. Both movies have subplots that involve love, marriage, and children. If time travel…

The Pressure of Caregiving Makes Self-care Difficult

Knowing that so much is riding on me creates a lot of pressure. I don’t get sick days, vacation, or weekends off. Taking time off to attend to my health issues requires finding and paying for caregivers for my husband, Todd, who is paralyzed due to ALS. For example, I…

Grabbing Bits of Beauty to Rejuvenate

“I am so sick of being sick,” Todd said. He’s having trouble kicking this bug that he’s been fighting for two weeks. His lungs keep filling with mucus, and I keep clearing them out. Just when we think he’s on the road to recovery because he has a long stretch…

ALS + a Cold = Stress x 10

My husband, Todd, came down with a cold last week. At this stage of his ALS progression, any cold is life-threatening. His lungs fill up with mucus, and he needs me to push on his abdomen so he can cough it out. Todd had a sore throat and a runny…