In 2003 I was diagnosed with focal dystonia, a disorder characterized by involuntary muscle contractions caused by what I was told was “overuse and misuse in practicing”. It manifested itself in the third finger of my left hand. When I picked up the flute my left hand would curl around the instrument making it impossible to play. For years I would have described it as it is named: focal dystonia. That is, focal to one finger on one hand, the left, and only when I picked up the flute. Over a decade since the diagnosis I would describe dystonia very differently, due in part from my training as an Andover Educator, as well as my continued experimenting and retraining.
I spent years not aware of the whole body patterns associated (and maybe even causing) the dystonic movement of my left hand. Working with a physical therapist awakened my awareness of those muscular habits. The therapist had me close my eyes as she gently traced letters on the tips of my fingers with a paper clip. On the right side, my response was immediate. I had no problem recognizing letters regardless of the speed with which she drew. The response on the left side was shocking. I felt clumsy and awkward trying to figure out the letters. Once I had gained some awareness, I realized that the muscles in my left shoulder and neck were clenched and tight.
The therapist explained that since dystonia is a sensory disorder, many patients experience an impaired sense of touch. My goal, then, was to, over time, retrain my sensory cortex while away from the flute and rebuild my sensitivity on the left side. This post will explain some of the retraining exercises I created for myself that have helped me rebuild sensitivity and awareness and lessen the dystonic movement.
To begin with, I did have my second flute rebuilt by extending the keys of the left hand and moving the G# key to the right hand. I also added sandpaper on the keys, but those things didn’t really help until I began some other exercises.
I gathered a box of objects that I carried around with me: glass beads, elastic bands, cotton balls, papers of varying textures and small toys. I began by inhibiting tension in either a balanced seated or standing position (and also on a treadmill or walking outside) and then moved the objects between hands while continuing to consider whole body awareness and the small differences between the right and left sides of my body. The goal was simply to keep breathing freely while encouraging the left side, the “dystonic side” to act more like the right side.
You are welcome to try this now with the cotton ball. How little effort does it take to “hold” the cotton ball? Do you notice a difference between the sensory feedback in your dominant and non-dominant hand? How does each react to weight? To release? Graduate to objects with different textures and weights. Is the process more or less of a challenge if the texture is smooth or rough? What’s happening with your jaw as you experiment?
This daily exercise was time consuming and exhausting in the beginning, but as time went on I could stay free and experience a sensory change in my hands in any situation, even while at a concert (which was always a challenge). I would, for example, while listening to a concert, switch between the textures of the arm of the chair, clothing fabrics, and the program. Although it would seem my attention was split, it was a way to include my body in the experience of listening. The alternative was to be tense and frozen on the left side during the listening experience.
I came to see that this exercise helped me balance internal awareness and external awareness simultaneously, a huge challenge in the years immediately following my diagnosis. This focus on the “quality of my being”, my whole being, prepared me for simple activities (different sensory inputs), more challenging activities like listening to a flute recital or recording, and eventually inhibiting dystonic movement with the flute in my hands.
*title from Guy Claxton’s Intelligence in the Flesh: Why Your Mind Needs Your Body Much More Than it Thinks