Dance Eases Symptoms of Neuromuscular Disease
Early-season snowfall covered my windshield as I sat in my decade-old minivan, the motor humming loudly. I needed to drive home, but tears clouded my vision, combining with the large, wet flakes splattering against the glass to distort the world. So, I sat, my hands over my heart, not wiping the tears away.
That’s the difference between tears of gratitude and those of despair. Gratitude tears flow slowly, tickling your cheeks and filling your heart to near-bursting. Tears of despair are forced from your body by throat-clenching sobs. As they pour down, you pinch your eyes closed and wipe them away, as if you could wipe away the heartache along with them. I don’t wipe away gratitude tears; I savor them.
For the first time in months, I was a complete person — a whole woman. -rather than someone with missing or defective parts. For an entire hour, my body responded the way I asked it to. My toes were still numb, but my legs moved in step with the instructor. My fingers tingled with the reminder of neuropathy but folded over my dance partner's hand without shaking.
A few deep inhales, and the tears slowed enough to drive home. Wondering how I could explain to my husband the gratitude of this moment, the magic of feeling like a person again, and the need to recreate this feeling every week.
Chronic illness and alternative therapies
I have Myasthenia Gravis and Chronic Inflammatory Demyelinating Polyneuropathy. Both conditions are autoimmune system disorders which means my immune system got confused and began attacking my nerves. I’ve developed problems with vision, working memory, and the connection between my brain and the muscles in my body. My limbs don't respond like they used to, and moving my right leg often takes significant concentration. I went from being a thrice-weekly runner and avid weightlifter to being a person who struggles to walk to the mailbox.
Before my diagnosis (which took nearly three years and fifteen doctors), my primary care doctor admitted she was out of ideas. She referred me to a functional neurologist, a chiropractor with special training in “the assessment, quantification, and rehabilitation of the human nervous system, utilizing sensory and cognitive-based therapies to promote neuroplasticity, integrity, and functional optimization.” I was skeptical because four other neurologists had failed to offer any ideas about treatment.
After several sessions with this new doctor, my neck pain began to ease. Not disappear, but ease to a point where I can sit at a computer for a couple of hours a day and be a productive member of society. However, my right eye continued to have trouble focusing, and my arms and legs were plagued by weakness.
During a visit when we discussed adding some interactive metronome work to reconnect the neural pathways, my doctor mentioned in an offhanded way that I might consider taking dance lessons. He mentioned that dance helped rehab a host of neurological challenges, including Parkinson’s Disease.
I nodded and ignored his comment. Dance lessons are expensive, and I’m already spending a small fortune on health-related services that my insurance company denies are necessary or helpful despite evidence to the contrary. I wasn’t about to add dance lessons to my family’s budget.
A serendipitous catalyst
Then, I woke up in a flare of pain and weakness that had me in bed for most of a week. Some days I was able to get up and get the kids to school, and some days I had the energy, after resting most of the day, to make dinner — or something that passed as dinner — for my crew.
Most of the time, however, I wasn’t able to get out of bed. Those sorts of flares send me into a negative mental spiral. It starts to feel as if this level of pain and immobility might last forever after a few days. Hopelessness breeds despair which just makes the pain worse.
During one of those despair-filled moments, I called my friend — the one who won't let me stew in negativity.
After a conversation with her, I ran myself a bath and added some lavender Epsom salts to soothe the muscle spasms that had kept me up the night before. As I soaked, I started thinking about my doctor’s suggestion that I take dance lessons. Before I could talk myself out of it, I looked up a local studio and dialed the number. I explained that I have a chronic illness that results in joint pain, lack of muscle response, and fatigue.
The woman on the phone explained that after a battle with neurologic Lyme disease, taking dance lessons changed her life and gave her back much of the function she had lost. It felt serendipitous.
I signed up for two introductory lessons during that phone call.
As I drove home after an hour of dancing, I remember how, with the music on, my right leg moved forward, backward, and sideways without stumbling. I could switch my weight from one foot to the other without losing balance, and I spun around without getting dizzy and needing to sit down.
It’s not like flowing music, and some repeated footwork eliminated the joint pain, the small joints of my toes pulsated by the end of the lesson, and my hips begged for an ice pack. The muscle spasms in my upper back and legs let me know that I’d overused them, and the nerves were tired of transporting messages.
But, for one hour, I moved like myself. I can only compare it to the feeling of freedom I used to get from sprinting down a leaf-covered trail on a cool October day. It’s a feeling I haven’t had in over two years.
Except on those nights I’d go dancing with my girlfriends. After I had to stop working, I remember people I thought were my friends asked me how I could consider myself disabled if I was able to dance. I didn’t understand it then, and shame burned my face at their words. I couldn’t explain how music impacted my ability to move.
But now, I understand.
Dance is more than physical exercise
Dance provides cardiovascular exercise, which is good for all of us, but the benefits go beyond just fitness. Ballroom dance stimulates several areas of the brain, including “the cerebellum, the somatosensory cortex, and the basal ganglia, triggering kinaesthetic, rational, musical, and emotional responses.”
Dance requires quick decision-making and learning new skills, both of which help form neural pathways that prevent neurological decline. Music influences the motor network of the brain. It calms the spasms and jerky movements that cause me to drop my coffee cup and miss when trying to apply lip gloss and allows for faster activation of the nerves required to get my right leg to move.
For people with chronic neurological autoimmune diseases, a prescription for dance can help maintain cardiovascular health, prevent neurological decline, and support emotional wellbeing. When you spend your days fighting to get your legs to walk, a period of time — however brief — where your body moves fluidly is a gift.
Alternative therapies aren’t available to most with chronic illnesses
I haven’t been back for more dance lessons because COVID shut down the studio and the prohibitive cost. Still, I recognize that I’m in a much better financial position than many with chronic illnesses.
I haven’t had to rely on disability payments because I could trade on my skills and start freelance writing and my own coaching business when I became unable to work. My partner can keep our family afloat during times that my illness prevents me from working.
I pick and choose therapies that aren’t covered by insurance, prioritizing chiropractic care, occupational therapy, physical therapy, and soon, the IVIg therapy that has a chance at sending me into remission. But, I wonder how much healthcare costs could be curtailed if alternative therapies that improve physical and mental health were covered for chronically ill patients.
If you’re someone with chronic illness looking to add dance to your therapy regimen but find the cost prohibitive, try finding a virtual option as they’re often less costly. Syzygy Dance Project (SDP) is a nonprofit organization based in San Francisco dedicated to bringing the benefits of dance to groups in need including the elderly and those with chronic illness. They offer virtual classes at this time.
Maria Chapman is a parent of five, a personal coach, and a chronic illness warrior. Follow her newsletter, Lies We Tell Ourselves, for more truth.