The ways music has comforted us while living with ALS

A friend who visited Mayo Clinic in Rochester, Minnesota, for a serious health issue posted a video on social media of a string quartet playing in the towering glass atrium of the Gonda Building there. It brought back memories of when my husband, Todd, and I went to Mayo for a second opinion after his neurologist in Milwaukee told him ALS was the possible cause of his muscle weakness.

We searched for another explanation for his symptoms, and Todd got a referral to Mayo from his primary care doctor to see a neurologist who specialized in other movement disorders. We drove six and a half hours across Wisconsin and into Minnesota for back-to-back tests and examinations. We were sad and anxious as we walked through the atrium on our way to his first appointment, but beautiful hymns sung a cappella by a group of women in simple black dresses, perhaps Mennonite, filled the cavernous space and calmed our nerves.

Music has the power to touch our souls.

The neurologist who specialized in other movement disorders couldn’t find another cause of Todd’s weakness, and he thought the suspicion of Todd’s Milwaukee neurologist was correct — it was probably ALS.

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We attended church that weekend, taking a pew toward the rear of the sanctuary. The congregation rose to sing “Here I Am to Worship,” a song from our wedding, and overcome with emotion, Todd fled from the sanctuary. I eventually found him around the back of the church. We embraced, and we both cried.

A couple weeks later, we picked up food to eat at home, but it was a beautiful day so we decided to picnic with our two young children in our front yard. I laid out a blanket and Todd opened the doors of the van and played a JJ Heller CD. Our 4-year-old daughter, Sara, sang along to “Your Hands“: “When my world is shaking/ Heaven stands/ When my heart is breaking/ I never leave your hands.” We’d played that CD many times before, but on that day the song felt personal.

Music has been a source of comfort for both me and Todd in the years since his ALS diagnosis.

Before Todd started using noninvasive ventilation, he had frequent anxiety at night and would use his Echo Show device to play calming music.

For me, attending a weekly ukulele group has become a respite from our daily lives. Strumming the uke and singing with others are meditative experiences, taking my mind away from ALS as I enter into the flow of the music.

Todd and I often listen to music while I’m cooking breakfast, although he recently told me that he can’t contribute to a conversation when music is playing because his voice is no longer loud enough to be heard over the music.

Todd frequently watches music videos on YouTube to occupy his sometimes long and boring days. He just showed me a video of a guitar trio, saying, “You might expect a guitar trio to have three guitars, but you’d be mistaken.” The video showed three men playing the strings of one guitar, and a fourth man used the same guitar for percussion. How cool is that?

Music is a joy we still have in the midst of the difficulties of life with ALS.

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