Reflecting on 12 Years Since the ALS Diagnosis

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by Kristin Neva |

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“Kristin, if you can’t choose joy for yourself, then do it so Todd’s remaining days and years won’t be miserable,” I wrote in my journal a month after my husband, Todd, was diagnosed with ALS. “Do it so your kids can see how to live well, so they will grow up with a happy childhood.”

Wanting to cope well is one thing. Figuring out how to do so is another.

On June 10, we reached the 12-year anniversary of Todd’s ALS diagnosis. The milestone made me think about the different ways I found the strength to keep going throughout the course of his disease.

Soon after the diagnosis, I processed my grief with my good friend Jana. We walked and talked, pushing our babies in strollers. Our preschool-age daughters walked with us, pushing their dolls in toy strollers, oblivious to the magnitude of the devastating news that I was trying to wrap my mind around. My empathetic friend mostly listened, and she didn’t offer platitudes. I so appreciated her love and support.

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As the weeks went on, I recorded my thoughts and feelings in a journal. I found a counselor who helped me deal with the anxiety I felt by training my mind not to look too far into the future.

Todd tried a few alternative treatments that anecdotally had positive results in a limited number of people. It felt good to try something rather than give up.

A couple years later, we sold our house and built an accessible house near my family. Taking action and creating a beautiful home felt good.

We wrote a memoir. I found purpose in sharing our story so that others in similar situations wouldn’t feel that they were the only ones dealing with something so difficult.

A few years into the disease, we entered a difficult phase when Todd couldn’t sleep through the night without assistance. I was sleep-deprived from being up and down with him at night. He would call for me to turn him or adjust his limbs, and then I couldn’t fall back asleep, not knowing if he would call me again to scratch an itch in five minutes or an hour.

During those years, I coped by exercising. I went to the gym and worked on the elliptical until the haze lifted. Not getting uninterrupted sleep was unsustainable, and it took a toll. After a couple years of sleep deprivation, we started fundraising to hire caregivers. Friends and family who help us pay for Todd’s nighttime care have saved my sanity.

Building a creative life at home gave me a sense of purpose for a number of years. I wrote three novels, which include a character with ALS, and Todd was my editor-in-chief. Working on those projects with him was fun. We also created YouTube videos about tips that we’ve learned to help manage ALS.

How about now, after 12 years with the disease? Now that life has gotten harder for both Todd and me. After years in the battle zone with so much time and energy spent just meeting daily needs and keeping him alive. When there’s no reprieve. How do I cope?

I seek out simple pleasures. I savor a cup of tea every morning. I complete the daily Wordle. I take a nightly sauna. I look for natural beauty. No matter how weary I feel, when I walk outside and see a beautiful tree or hear birds singing, I’m glad to be alive, even with all the pain in our lives and in this world.

ALS has taken a lot of fight out of me, but I hope these small things will be enough to help me keep going.

diagnosis of ALS | ALS News Today | A landscape photo of lilacs and lupines, with taller trees in the distances, taken during Kristin's walk.

Lilacs and lupines on my walk on the 12th anniversary of Todd’s ALS diagnosis. (Photo by Kristin Neva)


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