Dystonia

Dear Friends,

In January 2017, I suddenly experienced the inexplicable loss of ability to produce a tone on certain notes of my horn during an orchestral rehearsal.  Over the course of several weeks and months I attempted to solve this problem through various practice strategies and some periods of rest away from the horn.  Eventually I realized that my efforts were not going to succeed, and walked off stage mid-rehearsal, on June 2nd, 2017.  It is entirely possible that those were the final moments of my life spent on stage as a professional musician.

On July 3rd, 2017, I was officially diagnosed by Dr. Steven Frucht (Director, Movement Disorders Division – Mt. Sinai School of Medecine, New York) with Musicians’ Task-Specific Focal Dystonia.

This diagnoses was confirmed by Dr. Peter Iltis (Professor of Kinesiology, Gordon College) on October 7, 2017.  Dr. Iltis, who has devoted himself to studying the causes of this disorder, included me as a subject in his groundbreaking real-time MRI studies at the Max Planck Institute in Germany.

More information about the amazing work Dr. Iltis is doing can be found here:

http://www.gordon.edu/mrihorn

Below are some images from my day in the MRI:

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IMG_5165

Although I am attempting to smile for the photograph, there is no good way to express the emotions that I have been feeling since confirmation of this devastating diagnoses.  The general consensus within the musical and medical community is that Focal Dystonia has no cure.  There is no established treatment, and the causes are not yet fully understood.  I would roughly sum up the symptoms as loss of voluntary control in specific neural muscle groups.  For me, the back of my tongue and/or throat seems to close involuntarily when I attempt to play notes in the middle register of the horn.  This can be seen clearly in the picture above: notice that the figure on the left has a much more open airway (that is the ‘control’ photo of another professional hornist).  The image on the right (me) clearly has a blockage.  We are attempting to play the same pitch, and this demonstrates visually the issue that is preventing me from generating the sound I was accustomed to.  Because of this involuntary airway blockage, any attempt at performance or even personal practice is now basically impossible.

It is difficult to accept that I am not fully in control of my own body, and that I will most likely never regain my former abilities.   A dedicated routine of daily musical practice has given my life a sense of structure and purpose since I was a small child.  I am now struggling to replace the hours spent each day playing horn with a new discipline, and also formulate a new identity not centered around musical performance.

I realize I am not the first or last musician who will suffer through this devastating diagnoses.  There are many others with illustrious careers who have suffered and continue to struggle.  I am sharing my personal story here mainly to stay connected with the musical community, and as a resource for those who may not be familiar with Musician’s Focal Dystonia.

I want to thank all my friends, family, teachers and colleagues for your invaluable support.

Sending you all much love.

Alex