Thursday, March 22, 2012

Summary of my Embouchure Dystonia Rehabilitation

First, if you think you have this disorder, seek out the help of a professional neurologist. However, there are few who can properly diagnosis it. One of the most well-known neurologists in the U.S. is Dr. Frucht who has not only diagnosed several musician's with dystonia, but has published a significant amount of research on the disorder. He is also one of the founders of Musician's with Dystonia which is an affiliate of the Dystonia Medial Research Foundation. His link is on my sidebar to the right under medical referrals.

Please do not contact me asking if you have dystonia, as I am not a certified neurologists. I had to put this note here because I get a lot of people asking me to diagnose them after reading this blog post.

I've spoken with several professionals and musicians who have been debilitated, either by an injury to their face, or who have embouchure dystonia. I believe it is important to understand what works and doesn't work for others, and to look at everything objectively.

As I've rehabilitated over the years, I tried so many suggestions and advice at first because I didn't know what worked for me yet. I've had to deal with constant messages about who I should go to, what I should do, correct, or fix. All of which is mostly given out of good intention...however can be very unintentionally disrespectful, sometimes very misinformed, and can be frustrating having to deal with when I've recovered significantly. I also go to great depths to share my process and feel like no one takes the time to read it before writing to me.

Recovering from Embouchure Dystonia is a very individualized process. I can only take and leave what works and doesn't for me. It has been an evolving process to say the least, and I'm beginning to realize that trying to summarize it does not do it justice and difficult to explain thoroughly from all angles.

Also I want to mention that embouchure dystonia it is often mistaken for overuse injury or overuse syndrome. If you do not know much about the disorder, and especially if you don't have it, please realize that statements based on assumptions are not helpful and can be misleading to others. Also if you haven't read my blog very much, please don't assume things without first getting to know my process through reading several posts. I've invested several years into this blog to not only share my journey, but have links to several research, case studies, information, and studies on the disorder that can help you understand it further.

This is the simplest way I can try to explain my current process, and I'm sure I'll come back and make edits and add more as I begin to understand how to word it more properly.

Right now my rehabilitation is based on 3 main things, and is more of a holistic approach; meaning one that addresses many different layers such as retraining sensory/muscle function, body mapping, mental awareness, emotional coping/healthy self-esteem, and modifications.

Again, I am only sharing what has helped me. Embouchure Dystonia recovery is a very individualized process, so what works for me might not work for you. However, it is important for me to share what I have learned and benefited from, as there are no publicly documented recovery efforts by any musician's with embouchure dystonia in existence. Hoping this will provide a rare insight into what the neurological disorder can be like.

[1] Understanding what Dystonia is from a medical standpoint as much as I possibly can. Reading research, talking to people (medical and non-medical who deal with the disorder and the different types of dystonia), searching out various viewpoints. First and foremost, always thinking objectively while also balancing an open mind. Don't believe everything anyone tells you, but also don't avoid considering others thoughts/advice without first thinking it all through and seeing it from multiple angles. When someone says something that doesn't make sense or isn't thoroughly explained, ask more questions that pertain to how they got A+B = C and ask for them to explain and give examples or share a video if can of what they are talking about.

Also study as many articles, research, and related facial injuries or information. I have many links on this site under "links of interest" and along my sidebar on the right. I also feel it is vitally important to study not only embouchure form and function, but more importantly to study anatomy of the face; not just the muscles or the "obicularis oris" but all the muscles of the face and how they function together (Gray's Anatomy Book helps), as well all the nerves (facial and trigeminal nerves of the face), what feeds into what, what each muscles function does in the face, and also nerve-related injuries and alternative medicines and options outside of mainstream traditional medical care.

Even though there is not one culprit known to trigger dystonia, nor one method of recover that works for everyone, doesn't mean we know nothing about it.

What we do know is that it is a neurological disorder. Reprogramming sensory through retraining is what my rehabilitation routine is based on, and addressing many other areas; emotionally, mentally, physically. I believe many factors contributed to the onset of my dystonia, therefore it takes a great deal of work to not only overcome it, but approach my horn in a different way than before.

I should mention here that if you are having any pain alongside your dystonia symptoms, it's best to resolve the pain first and quit playing until fully recovered. It will only make things worse if you keep playing in pain. Sometimes rehabilitating and trying to play after being diagnosed with dystonia can cause a secondary injury from too much effort put into recovery. It is important to remember it is a process and takes significant time and patience and slow work. Nothing should be forced.

[2] Focusing on sensory-movement: reprogramming sensory by retraining muscle movement. This consists of three areas: (a) Relocation - basically playing in a different location than I normally do and building a foundation of playing based off that location. (b) embouchure tension awareness - learning how my dysfunctional embouchure functions; knowing when and where the tension and involuntary contractions/lateral pulls occur when I play, and making slight adjustments, and finding opposing movements and exercises that help release or lessen contractions in the embouchure. (c) practicing formation/muscle group motions or movements and regaining strength through specific exercises outside of playing. This is only focused on in my buzzing exercises, and not when playing the horn  - I'm not trying to force a stabilized embouchure and avoid focusing on what it should look like. I explained this better in my "beginning rehabilitation" blog posts and videos. When you become debilitated your embouchure does lose strength too because you can't play as much and you don't want to cause a secondary injury or create more tension.

Reprogramming embouchure functionality involves: rebuilding muscle strength, muscle memory, and sensory...they all go hand-in-hand. (d) stretches - moving your muscles in different ways and different stretches than you're use to doing.

[3] Building a personal routine: Which consists of (a) performance psychology - incorporating a positive mentality and rebuilding self-esteem...this helps a lot with the depression that comes with being affected by dystonia or an injury (b) retraining exercises - I use a large amount of buzzing exercises and range specific exercises. Again, I will outline my exercise routine more clearly on here soon. Also I have started posting videos of my routine...so it will all eventually be on here.

I want to add a note of caution here: Rehabilitation is a layered process, so my routine (or parts of my routine that I show) as a whole is an example of what I've slowly come to focus on as my embouchure function develops/recovers. It is an ongoing process...so for example; in the beginning I just focused on trying to produce a buzz into my mouthpiece, and slowly over time I was able to adapt and do more on my mouthpiece...so for months I worked on this; just buzzing. As I worked on buzzing and saw improvement, I was able to add on more exercises. Then a couple months later I started to focus on moving from buzzing to playing on my horn, and focused on producing a sound and eventually was able to move around and start to get to know my dysfunctional embouchure. So it is a very rigorous process because it is literally one baby step at a time...and it comes down to just relearning everything, small things that use to not be difficult before dystonia...like buzzing into a mouthpiece. I just wanted to re-emphasize that my routine is not so much a set routine, but a cumulative ...or I should say an example of what I've slowly built upon as I've recovered....what I was able to do step-by-step as my symptoms were relieving. My rehabilitation is learning how to reprogram/retrain my embouchure function or motor-skills after it's been completely deprogrammed...I don't know if I'm making an sense, but that's the best way I can describe it.

Annnnd....[4] I forgot! Some adjustments: I forgot to mention how important ice pack/heat packing is for me, and taking "women's 1-a-day vitamins". Also playing on my leg helped a ton in the beginning, and even now sometimes I don't feel comfortable enough to play off the leg. Breathing exercises and stretching exercises ...I always do them first and foremost before I start my routine! And most importantly, I play on a mouthpiece that feels good; is comfortable, and the first mouthpiece I started on actually. I played on it for a good 5-6 years since I started horn 12 years ago before switching...and now that I've gone back to it, I feel it helps out with the muscle memory some-how, and it has enough supportive back-pressure.

I have come a long ways, as my dystonia symptoms use to be prevalent in every register, and even when I buzzed. You can see this in some of my early videos under "Practice Journals" or "(Videos) Rehabilitation Practice Journal" on the side bar to the left.

3 comments:

  1. Wow. Your problem sounds so much more like an injury than what happened with me. I have developed TSFD more than once....I developed it when I was a violin major in college (and had to quit; that was before anyone knew what it was, and my teacher told me I was not practicing.) Then I developed it when trying to learn to play tennis. Then I developed it eleven years after I took up horn. In each case, I would get "herky-jerky" when I tried to do the movements associated with the activity, instead of doing it smoothly as I was trying to do. With the horn, I never got adequate instruction and kept ploughing away at the high range, and then I developed a distinct, uncontrollable lip tremor that actually sounded a lot like a very fast lip trill, and had to quit.
    For me, with all these things, I finally figured out that the problem is the WAY in which I try to learn, which is to focus strongly on what I'm trying to do physically. The brain path gets corrupted and off we go. I had a session with Jan Kagarice in which I learned that it was my focus of attention that was the problem. I can instantly stop the symptoms if I take my attention OFF my chops and put it elsewhere. Almost anywhere elsewhere....she teaches to focus on the air coming out the bell, I can't do that, but I can focus on my airstream or my big toe. When I do, the symptoms completely and immediately disappear. Trying to rebuild would put focus on my chops and actually make me worse. I can play quite fine as long as I am not nervous and keep my focus off my chops, and it gets better as I go along in a rehearsal because I'm concentrating on the music. I'm approaching 70 and obviously not trying to do anything other than have fun with my horn now, but I wanted to post this because it is just so opposite to what works for you, and is an illustration of how different this disorder is for everyone.

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  2. Thank you for commenting! I'm sorry you had to go through setbacks on multiple instruments. I'm so happy to hear you are playing for fun though and trying to avoid anxiety surrounding playing with others.

    Yes, it is a very individualized process, but so very important to share because no one else out there is willing to document their process of recovery publically or advocate for it so openly.

    Thank you for sharing insight into what does and doesn't work for you as well. Many players with FTSED struggle with taking the attention off of technique or whatever they were taught to focus on....for some they have to spend a lot of time on getting their mind in the right place for recovery.

    I have Focal Task-Specific Embouchure Dystonia and not an overuse injury. It is one of the most mistaken assumptions out there that FTSED sufferers have to deal with. There is a huge difference though.

    I too focus a lot on air, and recently wrote a blog and made a video over it called "Beginning Rehabilitation Strategies for Brass Players with Embouchure Dystonia."

    My rehabilitation is more of a holistic approach. I can't avoid playing altogether like you or avoid being aware of how my embouchure feels in order to help me adjust/modify to it through experimentation.

    There's also a difference between focusing on the embouchure form and function technique (how it should look and feel)...which should be avoided altogether. And focus on the embouchure signals being sent to you in order to help navigate and adapt to the dysfunction....what I do is more of an awareness of the sensory.

    I share my journey as a means to help others, so that they can take and leave whatever they feel might help or not help. It's never as a means to say it is the only way to rehabilitate or can be applied to all. But the fact that I'm willing to share a rare and vulnerable process, I hope that others can appreciate it with sensitivity. :-)

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  3. Here is the blog post I wrote over Standard Performance Technique Methods VS Rehabilitation Methods and Beginning Rehabilitation Strategies.

    https://focalembouchuredystonia.blogspot.com/2018/12/standard-performance-technique-methods.html?fbclid=IwAR1Q5zE-agfzba8-eKlkA4V2_5tTuIe33x5YqT6UtGt0ZyOl--2L55ya-Ro

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