How Music Helps Me Manage Life With a Neuromuscular Disease


There are a multitude of therapy options geared to aid healing and managing chronic illness. Most require a fair bit of effort and possibly some pain. Music, on the other hand, is one therapy that can offer physical, mental, emotional, social, and spiritual benefits to almost anyone.

Well-trained music therapists use music interventions to accomplice specific goals in the quest to improve lives. This modality is becoming increasingly relevant when treating people with speech and memory conditions such as stroke and dementia.

According to the Alzheimer’s Foundation of America, “When used appropriately, music can shift mood, manage stress-induced agitation, stimulate positive interactions, facilitate cognitive function and coordinate motor movements.”

Our brains are wired to respond to music even though it’s not essential for survival. I bet most of us experienced music before we were able to speak by hearing lullabies or musical toys meant to calm or entertain us. Today, maybe you listen to soothing meditation sounds, your favorite radio station or streaming service or get out to hear live music in a local venue or music festival.

Our neuromuscular motor system naturally moves to a rhythmic beat. When our nerves are triggered by sound, we want to assume the vibe or groove. Now, I may be dating myself, but I recall how quickly my teenage friends and I dove onto the dance floor whenever we heard American R&B band Chic tell us all to Freakout! at the start of their 1978 mega-hit Le Freak. And the fitness industry also capitalizes on music-based exercise programs to accompany Zumba and aerobic classes. Who says losing weight can’t be fun? Dance and fitness classes are beyond my ability level at this point, but listening to, and attending music events are key activities that help me to manage my emotional mood and physiological outlook with respect to my disability.

Music has an amazing ability to transform our emotions and memories by taking us on an omnidirectional roller-coaster. In fact, music is second only to our sense of smell for its ability to stimulate memories. On a social level, music is a great equalizer for audience members; everyone is there for enjoyment. It’s non-invasive and yet can also be powerfully motivating.

As a person who cannot sing, dance, play an instrument or hold a tune of any kind, I especially enjoy live shows — but all too often I bump up against the issue of accessibility. Not all venues are wheelchair accessible, and municipal building regulations have yet to comprehensively enforce public access requirements. Nonetheless, I attend as many shows and festivals as I can, and for my disability, music is my therapy of choice.

Follow this journey on Susan Wheeler-Hall’s website.

We want to hear your story. Become a Mighty contributor here.
JOIN THE CONVERSATION

Related to Charcot-Marie-Tooth Disease

woman on a bridge

What Nobody Told Me About Living With a Progressive Disease

When I was a mere 9 years old, I was officially diagnosed with Charcot-Marie-Tooth disease (CMT). My mother, who was misdiagnosed with polio, which is not a genetic disease, noticed early on that I displayed a weakness in walking. I don’t remember when the doctor visits and medical tests began, but I do recall being confused because I felt [...]
Charcot-Marie-Tooth disease.

What I Wish People Understood About Charcot-Marie-Tooth Disease

I live my life with a disability that affects the way I walk and my ability to get around. Many people who meet me wonder what happened – was I in an accident, or did I have a severe back injury? When people inquire, I usually tell them I have a progressive neuromuscular disease, and [...]
Akshima outside in a park

Why 'How Are You' Is the Most Difficult Question to Answer With My Rare Condition

“How are you?” has become the question I fear the most. 360 days a year I have consistent, unbearable pain in one part or another of my body, thanks to my incurable and progressive neurological Charcot-Marie-Tooth disease. I feel claustrophobic, trapped in my own body and often find myself lying when someone asks me how am I doing.”Very Well.” That’s my [...]

The Conversation I Had With My Daughter About Heaven That Left Me Stunned

If there is such a thing as thriving in hospice, we are witnessing it. My 4-year-old daughter, Julianna, has a severe neuromuscular disease. Though her body continues to get weaker, Julianna’s mind and spirit are bright, sharp and lovely. Last year was a desperate campaign against her disease, but now we are in a sort of [...]