My brief foray into Dystonia: should we be ‘prescribing’ music therapy?

Music therapy can help patients with movement disorders improve motor functioning, improve mood, decrease anxiety, express and process emotions, acknowledge and confront their illness or symptoms, develop a stable identity and improve motivation for therapy.

Recently, I experienced an episode of dystonia, out of the blue, completely unexpected and rare in my case. Dystonia is a movement disorder. Muscles contract involuntarily and can spasm, often in repetitive motion, tremor and may cause the patient to physically twist.

Initially, I was intrigued. Being a music therapist, I have seen dystonic spasms and contractions in patients.  Before I was even worried for myself, I marvelled at how my body could contract, fold up, and move about like it had a mind of its own.

Soon the intrigue wore off. The uncontrolled, intensive and intrusive spasms in my face, trunk, neck and hands became tiring. All this movement. All this contraction. I could keep the contractions mostly at bay for short periods, enough to have a coffee at one of my favourite spots with a friend, although the twitches around my face, lips in particular, were still present. It was worse for me at night. When I became tired I lost the energy I needed to exert whatever control I could muster to restrain the spasms and contractions. My body would automatically seize up and contort in ways I didn’t think possible! I would lie awake for hours just being with these contortions.

I got tired. I got scared. And then I got emotional. Even my emotions stopped playing ball and ambushed me with unexpected bouts of sadness, seemingly rooted in the trauma of experiencing such an unusual degree of loss of control of my body.

man falling dystonia music therapy

About Dystonia

Dystonia is a movement disorder. Muscles contract involuntarily and can spasm, often in repetitive, rhythmical motion and may cause the patient to twist. Dystonia is sometimes painful and it may affect one’s speech. Dystonia can severely disrupt one’s lifestyle, work, social life and ability to care for oneself, depending on the severity. It can also affect one’s self-esteem, one’s sense of personal power and leave one feeling fearful. Understandably, dystonia may lead to depression, feelings of hopelessness and negative emotions because of a lack of agency and control over one’s body. Dystonia can be distressing for the patient and for the family.

As many as 250,000 people in the United States have dystonia, making it the third most common movement disorder behind essential tremor and Parkinson’s disease. It is a condition that knows no age, ethnic or racial boundaries – it can affect young children to older adults of all races and ethnicities.

There are many causes for dystonia including:

My brief experience brought to my full attention the plight of many with symptoms of dystonia. Being a music therapist, I couldn’t help but be keenly aware of the specialised and effective interventions music therapy has to offer.

Should we be treating patients with movement disorders with more clinical music-making? Should we be ‘prescribing’ music?

Fortunately, my dystonic episode was short-lived. While it was uncomfortable, there was a great deal to learn. In my brief experience of dystonia, I tried my best to experiment with music therapy techniques and exercises. I found that while playing the piano, my symptoms were almost non-existent.  I also found that specialised music therapy exercises using vocals and tongue (or relevant body part) movement, as well as music and full body engagement exercises led to a feeling of increased agency, relief and control over my body. While I have worked with patients with dystonia, this experience afforded me an unbelievable window into the difficulty that some of these patients experience, as well as a clearer view as to how music therapy techniques are uniquely placed to offer relief, rehabilitation and experiences of freedom that may not be otherwise possible.

The research supports my experience: the brighter side of music in dystonia’ shows how playing the piano, can cause an “instant and complete improvement” in dystonia symptoms. This finding was unexpected because symptoms of dystonia are expected to worsen with activity. Piano playing — an active music making experience — seems to have a paradoxical effect.
Music therapists are able to treat dystonia at a musical-therapeutic level.

Music therapists view human beings musically. Our breathing is rhythm, our voices melody, our tone timbre, our way of speaking articulation, our movement form, for example. Repetitive twists and spasms can be viewed as musical events and be treated using clinical musical interventions. Music therapy, the clinical use of music processes, interventions and exercises in the music therapy relationship, can have an ordering, relieving and empowering function.

Rhythm, often with melody, used in music therapy are powerful forces for drawing the patient into a sequence of controlled rhythmic movements. Music therapists and the particular music therapy techniques helps to motivate, encourage and reward controlled movements, sometimes allowing for extended range of motion or more controlled movements.</strong> Music therapy techniques also allow a client to use their bodies more intentionally and to develop a different relationship with their body, pain or discomfort. 

Because of the musical nature of the therapy, the patient may naturally or automatically feel an inherent motivation to complete the therapeutic movement within the musical frame.  Difficult therapy sessions can be  made easier for the patient, even more enjoyable, by the medium of music, and may increases patient motivation to take part in therapy. 

We all have an innate understanding of the ability (the “power”) of music to prompt movement, restraint, expression and relief. Music therapists are highly trained and skilled in using music clinically, deliberately and specifically to work toward therapeutic goals in a way that music uniquely offers.

The transferability of these techniques into the patient’s life show great promise in the cutting edge research and practice coming out of Neurologic Music Therapy. These music therapy techniques give patients with dystonia hope and allow them to recognise that even with their symptoms, they can yet experience a measure of control and selfhood.

A music therapist will require that you have seen a medical doctor if you present with dystonia. There are also pharmacological treatment options, that should be explored. In extreme cases of dystonia or related conditions, music therapy addressing dystonia should be provided multiple times per week in order for neuroplastic rehabilitation to take place. There is a great deal research on music therapy and related disorders, including Parkinson’s, Huntington’s Disease, and many more.

We all have an innate understanding of the ability of music to move us, prompt physical movement, restraint, expression and relief. Music therapists are highly trained and skilled in using music clinically and deliberately to achieve therapeutic goals and are doing such work worldwide, including in Cape Town, South Africa.

What do you think? Should doctors be ‘prescribing’ music making for patients with dystonia?

What would you want as part of your treatment protocol if you experienced Dystonia?

Share this page with anyone whom you think may benefit from music therapy, or who might like to know more. If you want to book a music therapy session or consultation, please email me via the contact form, clicking here.

Melissa Ellse holds a Bachelor of Music (University of Cape Town) and a Masters in Music Therapy (cum laude, University of Pretoria). She is a part-time lecturer in music therapy at the University of Cape Town and a research supervisor at the University of Pretoria. She practices as a registered music therapist in the Southern Suburbs of Cape Town. She is registered with the Health Professions Council of South Africa (HPCSA reg no AT 0001350).

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