ABOUT MY JOURNEY WITH FOCAL EMBOUCHURE DYSTONIA AND THE BLOG LIVING WITH EMBOUCHURE DYSTONIA
In early 2009 while completing my undergraduate degree in music performance on horn at the University of Northern Iowa, I started experiencing onset symptoms of Focal Task-Specific Embouchure Dystonia.
By 2010 I was completely disabled to the point of being unable to produce a sound out of my horn. None of my professors or anyone that I reached out to knew how to help or what was happening to me, nor about the existence of such a malady.
After months of trying to find a neurologist and more than a year passed I was officially diagnosed in 2011 thanks to a referral from my physician. Thereafter I started the process of searching for information on embouchure dystonia. It was shocking to find that barely anyone, especially professional level musicians were not speaking out about it. There is no publicly documented rehabilitation attempts or strategies and I was equally confounded with the lack of accessible quality resources (e.g. research articles, reputable practitioners, clinics, neurologists, support groups) collected in one place.
An overwhelming amount of misguided information still exists; usually published by non-dystonic musicians, psychologists, and people scheming for profitable amounts of money claiming musician's dystonia is solely a psychological or emotional behavioral disorder with no scientific publications on the details of their methods and no research to back up their claim.
Most offensive is the idea that if a musician is not able to be cured, then it is the musician's lack of commitment instead of the practitioner's method. For a disorder with an unknown cure it is easy to fall into the trap of pseudo-psychology explanations. This doesn't happen so much in the realm of hand dystonia, but primarily pushed on brass and woodwind players with embouchure dystonia.
Initially I started my blog Living with Embouchure Dystonia as a way to keep track of noted observations throughout self rehabilitation. After what is considered a career-ending diagnosis I was not going to shoulder an undertaking in silence, nor go out without a fight.
I had my first large-scale orchestra concert in 2016 and proud to say I've taken a huge step by joining a community orchestra in 2018 with the hopes of slowly reintroducing myself to performing. After making significant progress in 2013 other musicians with dystonia started reaching out for advice and guidance. It was then I realized the dire need to advocate more awareness, share information on various types of brass performance-related injuries, and collect as much embouchure dystonia research possible on my blog.
Because embouchure dystonia in particular has no publicly documented rehabilitation strategies and attempts currently, by default I am one of the few, if not only, brass players who have documented an in-depth process over the span of 10 years. The importance of this fact is one of the reason I have kept my blog going so long...in the hopes of passing on some insight into what it is like living with embouchure dystonia and managing it long-term.
Music performance-related injuries are still taboo to speak about, and the field of music and medicine is only in its infancy. It would be ideal if the music performance field followed in the footsteps of sports medicine; open about the truth that performing comes with it's own risks that are not always avoidable, but simply a consequence of the demands of the profession and quite common.
Yet, in the profession of classical music we are trapped in the old and harmful mentality that if one has superior technique, skills, and chops, they can avoid major physical setbacks. And if we do get injured or can't recover, then we surely must have poor mechanics, doing something wrong like playing with too much tension or pressure, mentally unfit, or just don't have what it takes to be a professional...when in fact this couldn't be farther from the truth!
Another flawed view is that because focal dystonia has no known cure, then one shouldn't focus on the symptoms. Yet it is important to realize that any disease or disorder with no cause and no cure must focus on symptomatic treatment because recovery is not just about the "cure", but about the overall well-being of a person too. By alleviating or significantly reducing symptoms, even if not a 100% recovery, can lead to improvement in ones happiness and restore enjoyment in playing their instrument again.
Although overall the range of treatments have proven unsuccessful, research has shown that retraining/physical rehabilitation as the most effective in comparison to other traditional treatments such as oral medication or botox, and more natural of an approach. This goes double for embouchure dystonia, as success rates are even lower in all categories of treatment except retraining where there are reported case studies. The only methods to have shown promising results (for Focal Hand Dystonia) is Deep Brain Stimulation (DBS) or Focused Ultra-Sound (FUS) brain surgery, which requires more research and very few get the opportunity especially within the United States due to the FDA restrictions. Because embouchure dystonia lacks effective treatments, stands less of a chance for brain surgery ever, and has more case studies and self reported progress through retraining, it points to the importance of bringing retraining experience to the forefront in our area of understanding....not keeping it in the dark. Yet, for many it is hard to explain in simple terms what retraining all involves.
Another issue getting in the way of recovery is due to those against traditional medical treatment, and those against non-traditional treatment. It is important to realize that by being against one or the other doesn't help those who may actually improve from one form of treatment or the other. A great example is botox. Although less effective for embouchure dystonia, there are a few out there it has helped, and it has proven helpful for many with hand dystonia. Not to mention some neurologists are trying to improve the way botox is administered to the correct muscles through research. Yet, several non-dystonic musicians advise against or misinformed about it, and this makes those who have seen improvement feel comfortable speaking up about it....and it doesn't help to judge them for relying on this form of treatment. In the end, it is up to the musician with dystonia to make their own choices in what is best for them, and it is up to the rest of us to be open-minded about the various treatment options; whether or not they work for everyone or a select few. Recovery is an highly individualized process and there is no cure-all. Therefore a cohesive/holistic/eclectic approach is ideal.
The last flawed view on musicians with dystonia is that we should not reach out to other dystonic musicians who claim to help others because they are not medical professionals, nor should we reach out to medical professionals because they don't understand musicians and depend too much on pharmaceutical drugs and don't care about us....and we should instead rely on non-injured professional musicians who have evaded injury or never had dystonia (as if this makes them more knowledgeable than those who have experienced a major physical setback, and medical professionals).
Although I am fully against the collecting of money when there is no known cure, I do fully support dystonic musicians who help others through sharing their own journey and insight. It is important for musicians with dystonia and injuries to be open with one another, otherwise we will learn nothing.
Some doctors may lack an understanding as there are few specialists who have seen and worked with musicians with dystonia, it is equally our fault as musicians for not bringing music medicine and health to the forefront and help bridge this gap between the two professions! An important reminder that neurology is also in its infancy and every attempt to conduct research is not a lost cause. It's equally important for musicians with dystonia and neurologists to come together to find and create cohesive approaches to recovery as they both have advantages of understanding the disorder from different angles.
I believe the rising number of injuries is due to these misconceptions and a flawed cultural mindset being pushed on the next generation of students and musicians - along with standard pedagogy having too much of an emphasis on perfecting technique down to the last detail. Yes, injuries are not 100% preventable, and there is no known prevention of embouchure dystonia. Yet, there isn't a doubt in my mind the current way things are being taught and enforced in today's pedagogy practices is contributing to more injuries and adding more stress to career-ending setbacks like musician's dystonia.
It is not as though organizations supporting performance art health don't exist. The issue is that in order to make a greater difference in educating others the field of music and medicine has to be important enough to collegiate music programs to want to host guests, promote educational workshops for current music students, music teachers, professors, and professional musicians.
Courses on Alexander Technique, Feldenkrais, Rolfing, musician wellness programs, and musician counseling at universities has been popping up more often in the last 5 years. Teaching body movement methods is a great start and I am happy to see more people trained in these techniques.
However, universities could go even further by bringing in guest artists who have experiences with injuries or disorders; doctors, neurologists, occupational therapist, and physical therapists (allied health professionals) who are involved in performing arts medicine and at performance art clinics; or even a panel of musicians who are deeply involved in the area of performing arts injury advocacy who can speak first hand.
Another great option is for professors to bring in individual guest artists who have dealt with major setbacks on their specific instrument, as they can relate more on a personal level, explain issues in musical terms, and demonstrate. I believe we would see a decrease in musician injuries and increased interest in the profession of performance art health. Ultimately I wish I could see that dream through in my lifetime and travel around to give open lectures on embouchure dystonia and brass performance-related injuries at universities, or at least start a conference for dystonic and injured musicians.
Naturally music students seek out advice on injuries and setbacks from active professional level players, teachers, and professors who may not have experience with their particular setback or dystonia.
Professors and professional brass players at best are able to provide knowledge on mechanics; how to not overdo pressure, using air properly, how to warm-up/down, and how to improve stamina, but rarely understand the importance of how focusing on these things will make things worse because recovering from injuries and disorders do not involve fixing errors/habits in playing, mechanics, or psychology, but solely deal with healing the inside of the body (damaged tissue, damaged neurons, etc) or restoring brain function and sensory.
That is why when it comes to major medical concerns, it is always best to reach out to a doctor or neurologist first, and then later, if trying to rehabilitate, to work with a diagnosed musician who has experienced your setback first hand and can provide further guidance. The trouble is there aren't many of us who speak out so boldly about our injuries or disorder.
Another challenge to the field of music and medicine is that musician's dystonia is hard to diagnose during onset stages due to the similar underlying symptoms of overuse injury. There are also few neurologists who have seen musicians dystonia or know how to properly diagnose it. However, the ones that have seen the most cases are highly recognized for the significant amount of research they've done on musician's dystonia and sought out, such as Dr. Eckart Altenmüller, Dr. Steven J. Frucht, Dr. Stephan U. Schuele, Dr. Mark Hallett, Dr. Richad J. Lederman, and several others.
Also, musician's with focal dystonia need each other since it is only 1-2% of us among the musician population that end up with dystonia, and it is important to share strategies, progress, and to be emotionally supportive of one another. I understand why some remain quiet about their disorder, yet, it is important to have a place to console in only those who have the disorder.
Therefore, I created three groups on facebook that I hope will help: "Horn Players with Focal Dystonia," and "Musician's with Dystonia and Neurologists Sharing Scientific Knowledge and Resources," and "Musicians with Dystonia Emotional Support Group." Musician Focal Dystonia is a very touchy subject and highly misunderstood by those who do not have it. Therefore there is a need for an exclusive place among MFD sufferers to feel safe speaking out.
If you would like to hear some wonderful musicians from around the world speak out about their journeys with focal dystonia, I did a live-stream video series in 2020 called: Musicians Dystonia Live Talks where musicians around the world share their journey's with dystonia.
It is my goal to someday write a book about the art of perseverance, to start a foundation or create a conference for musicians with dystonia. Most of all, I want to provide hope, light, and inspiration to others who suffer form this disorder.