Rediscovering Music and Memories in Our Marriage and ALS Journey

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by Kristin Neva |

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Music had been a source of connection and mild contention early in my relationship with my husband, Todd, but it hadn’t been much of either since Todd became paralyzed due to ALS.

Our first date was to an Alison Krauss & Union Station concert. Todd was new to Milwaukee when he heard that Krauss was coming to Riverside Theater. He bought two tickets, not knowing who would go with him to the concert.

I’d met Todd at a church event for early-career adults a few months earlier, and I saw him at a half-dozen gatherings after that. And then he called and asked if I wanted to go to the concert. I was a fan of Krauss, and I was interested in getting to know the new guy in our group, so I enthusiastically agreed. We both enjoyed the concert and, more important, the easy conversation that flowed between us that evening. That March 27, 2002, was the first of many dates. We got engaged in December, and we married the following August.

Todd and I found common ground in our musical taste in soulful artists, like Norah Jones and Krauss, but we each liked music that the other wasn’t fond of. Todd liked alternative rock, and I liked contemporary Christian music. And he liked his music loud.

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I liked to play music quiet enough to carry on a conversation, even when I was alone, but I would sometimes come home to his music turned up and the booming bass vibrating the floor of our house. I found it impossible to relax, so he’d turn it down or off.

Todd’s ALS diagnosis came seven years into our marriage, and a few years later, his arms were not working well enough for him to turn on his stereo when I was out of the house. Todd’s Denon stereo, bookshelf speakers, and a subwoofer sat in our living room largely unused. When we listened to music, we usually just played it through a smart speaker. Todd sometimes listened to music on his computer with little desktop speakers, but he didn’t seem to have the same passion for it as he once did.

Last week, it occurred to Todd that maybe he could connect his stereo to his computer. He doesn’t know why it took him so long to realize it, but he already had a cable that he used to digitize cassette tapes, and he could use that in reverse to connect the computer to the amplifier.

I rearranged furniture, making room for his stereo system in his office. Our son, Isaac, moved the stereo and connected it with his dad’s direction, and he screwed brackets to the wall to hold the speakers.

“There is so little that changes in my life,” he said. “I’m just here in this office day in and day out. I’m excited to have my stereo back.”

Every now and then, Todd has me put one of his old CDs in his computer so he can rip it, making MP3 files of his music library.

I smile when I walk past his office and hear the thumping bass, because he’s finding renewed enthusiasm in his music. In a life with ALS, we need to hold on to the small things that bring us joy.

The other day, I was cleaning and organizing his office, and Todd asked me to put Krauss’ “Forget About It” CD into his computer. He had me turn off his subwoofer, and we listened to music from the beginning of us.

Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.


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