The ways music has comforted us while living with ALS

In praise of a cappella public singing, ukulele groups, and an odd guitar video

Kristin Neva avatar

by Kristin Neva |

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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.

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.


Suzanne Gallo avatar

Suzanne Gallo

Great post. Even if my hubby PALS doesn’t want to listen to music: for some reason, music bothers him, but he was a guitarist, and a huge music fan, soooo- I blast music every chance I get. I listen in the house, my car, out in the far yard- and at the gym. Love it. Love music. Makes me cry. Good endorphin release.

Brian Mulhern avatar

Brian Mulhern

My ALS Top Five:
“Killing Me Softly” (Roberta Flack)/ “Doctor, Doctor” (UFO)/ “Do You Really Want to Hurt Me?” (Culture Club)/ “Don’t Touch Me There” (the Tubes)/ “I Need A New Drug” (Huey &the News)

Helia avatar


Your post made me laugh, Brian. Great black humor.

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