Kristin Neva,  —

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.

Articles by Kristin Neva

Things Can Change Quickly With ALS

On New Year’s Eve, I took our kids and their friends bowling. My husband, Todd, who has ALS and is paralyzed, stayed home and used his computer. As we arrived at the bowling alley, I received a text from Todd saying that he needed my help with his…

Making Game Nights Work

It feels like a win when we can figure out how to include my husband, Todd, in game nights. He is paralyzed because of amyotrophic lateral sclerosis (ALS), so any game that requires writing or moving is a challenge. That would include most games, but we can make some…

Gaining Behind-the-Wheel Experience Navigating ALS

“How am I supposed to drive when I can’t see anything?” my nearly 16-year-old daughter asked. Sara and I were logging night-driving hours, which are required before she can take the second segment of driver’s education in January. She already has 12 hours behind the wheel, mostly during the day,…

A Tree Full of Memories

We decorated for Christmas this past weekend. The kids and I went out into the woods, and my 12-year-old son, Isaac, cut down a balsam fir. My 15-year-old daughter, Sara, carried it back to our house, and we put it in the tree stand in the living room. When we…

Taking Help Wherever I Can Find It

About four years ago, I began to be overwhelmed with sadness about my husband’s continuing decline from amyotrophic lateral sclerosis (ALS). Todd and I have often said that if the disease progression would just stop, we could adjust. But managing ALS only becomes more stressful as time goes on,…

When a Season of Life Is Fading Away

I’ve been preparing for winter. I drained the hoses and hung them in the garage a few weeks ago. We used the lawnmower to pull Comet’s doghouse from our backyard to the front porch, where he will still be able to get into it after the snow accumulates. I called…

Unexpected Outcomes From Sharing Our Story

“Your YouTube channel must be taking off,” my 15-year-old daughter said. “Your edema video was recommended to me again. I was just scrolling through YouTube, and then I see it, and I’m like, ‘What’s this?’” Sara continued with increasing volume: “Oh, that’s my father’s foot! My father’s foot has…

When Fear Gives Way

“How are things going?” a friend asked. I explained that I have been concerned about my husband Todd’s breathing. He’s been waking up with headaches, which could be a sign that his breathing strength has declined due to ALS. He might benefit from noninvasive ventilation, but doesn’t want…

The Power of Puns

“Hurry! I’m having a pee-flex,” my husband said as I put on disposable gloves. I grabbed the urinal and held it for him. Todd invented the word pee-flex to describe the sudden urge to go once he drives his wheelchair into the bathroom. He is paralyzed from ALS, so…