NY Flute Fair: Focal Hand Dystonia and the Working Musician - Panel discussion with Stephanie Mortimore, Dr. Steven Frucht, Eric Phinney, and Abhik Mukherjee. Moderated by Caity Massoud.

Thank you Stephanie Mortimore, Dr. Frucht, Eric Phinney, and Abhik Mukherjee, for making such a huge stride in the area of Focal Hand Dystonia awareness and open communication with the public. This has to be the first panel of musicians with dystonia joining together at a conference to share their insight and experience. What progress!!!

TED Talk: Dr. Daniel Amen

"Behavior is the expression of the problem. Not the problem." - Dr. Daniel Amen

Sensory Tricks with Dystonia

 A list of some sensory tricks (i.e. includes motor tricks/forced tricks/reverse tricks/imagery tricks) among various dystonias.

 If you know anyone that has Focal Embouchure Dystonia or thinks they might, the list of Oromandibular Dystonia (jaw dystonia) and Cervical Dystonia (neck dystonia) sensory tricks may give them temporary relief or lessen the overall strength of the symptoms.

 It's also a tell-tail sign you have dystonia if a sensory trick works. However, not all cases report sensory tricks, and some musicians don't even realize it until the neurologist finds they have one during evaluation.

 I come across a lot of brass players with FD where the symptoms and/or tension spreads to their tongue, jaw, neck, shoulders, and upper back. Some of these listed are already common tricks among brass and wind players with ED.

The most that I have come across and been reported to me consistently is: placing something between the teeth, some type of modified guard or splint, icing the face before playing (this worked for me but not the safest), touching the face or neck, drastic change in body movement/posture, focusing on a specific object or visual, change in size or back pressure of mouthpiece, and tongue depressor.

 The key is if you can find a way to incorporate it into rehabilitation or help the sensation of the sensory trick bleed over, it may aid throughout the recovery process. A few examples of this are: "geste" - visualizing the sensory trick, imagery that tricks the brain into avoiding playing mode (ex. I had to visualize blowing on hot cocoa to stop my embouchure from automatically setting). Using a modified guard or splint while playing. Incorporating a tongue depressor throughout retraining to override the damaged brain pathway.

It's not about suppressing the dystonic symptoms or avoiding them. It's about lessening them to a degree so that you have a chance to rebuild a new pathway that the brain recognizes. It's like distracting the messed up signal temporarily so you have a chance to rewire things. Sensory tricks can come in handy if you literally can't get a sound out or things are severe. However, not everyone has a sensory trick.

An actual highly successful method of treatment among musician hand dystonia patients is splinting. And there is only one study that was conducted in Japan on modified dental splinting on three patients with embouchure dystonia with all three returning to performance. It would be great if there was more research in this area of Musician's Dystonia.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4747630/

Vibro-Tactile Stimulation as Treatment for Spasmodic Dysphonia

A look at one of the many current treatments for Spasmodic Dysphonia (vocal/laryngeal dystonia). I'm currently trying to figure out if this is the same or different than using a TENS unit, because TENS has helped me.

Dr. Keller: Large Study Finds Predictors of Musician's Dystonia

I saw my friend Richard Ware share this insightful article, so wanted to pass it on....hit "continue reading" in order to see full article.

Large Study Finds Predictors of Musician's Dystonia
Daniel M. Keller, PhD

October 09, 2019

NICE, France — A new review suggests musician's focal task-specific dystonia (MFD) often occurs subsequent to a triggering factor, such as a change in technique or increase in practice, and that many patients have concurrent ipsilateral neuropathy, particularly ulnar neuropathy, suggesting it may be an important risk factor, researchers report.

MFD affects 1% to 2% of professional musicians, is an important occupational disability, and can be career-ending. The most common form is musician focal hand dystonia (MFHD), with onset in adulthood at the peak of performance careers.

Less common is embouchure dystonia, which affects woodwind and brass players. Typical treatment with botulinum toxin injections and retraining are most often unsatisfactory.

A review of 2649 case records of performing musicians from health clinics treating performing artists at the University of California San Francisco (1984-1989) and Partners HealthCare in Boston (1989-2015) identified 240 consecutive cases (9.1%) of MFD. Cases were compared with a cohort of 532 nondystonic patients with ulnar nerve entrapment.

Speaking during a group poster tour here at the 2019 International Congress of Parkinson's Disease and Movement Disorders, Christopher Stephen, MB ChB, Massachusetts General Hospital and Brigham and Women's Hospital Performing Arts Clinic, Boston, Massachusetts, reported that "ulnar nerve entrapment had increased prevalence in focal hand dystonia — 30% as opposed to 22% in our whole musician's cohort of 2649 musicians."

In addition, of the 66 patients with MFHD and ulnar nerve entrapment, all but one were ipsilateral. "It's quite a striking finding," he said.

Predictors of MFHD versus ulnar nerve entrapment included male gender and playing professionally (both P < .0001). Predictors of worse outcome included the number of fingers involved with dystonia (P = .0009) and being an amateur musician (P = .0138).

Ten percent of the dystonic cohort had a family history of movement disorders, whereas this was very rare in patients with ulnar nerve entrapment only.

The MFD population was about 70% male, consisted mostly of professional musicians but also 30% amateurs and about 8% conservatory students. The age of onset was about 36 years but with a wide range of 10 to 67 years. About 72% performed classical music, 16% jazz, and 12% other genres.

A side predilection depended on the kind of instrument, for example, piano or plucked strings. MFHD was rare in brass and percussion players.

Of the 215 cases with MFHD, 160 (74.4%) had a pure flexion dystonia, most of them with flexion of the ring and little fingers. Extension-only dystonia occurred in 25 patients, and most of them played woodwinds.

The majority (72.2%) of MFHD patients had reported an associated event prior to developing the condition, whether musical (eg, increased practice, new technique, or a new instrument) or nonmusical (eg, concurrent neuropathy, overuse injury, or emotional stress or trauma).

Fifty-two patients (24.2%) received botulinum toxin injections, with 30% of them having substantial improvement, but most discontinued this therapy due to lack of benefit. Oral medications were minimally effective in treating dystonia in MFHD but sometimes helped treat tremor.

Of the 66 patients that had ipsilateral ulnar nerve entrapment and MFHD, 27 underwent surgery for the entrapment. Most had substantial improvement in symptoms and signs of ulnar nerve entrapment, and a minority had improvement in dystonia.

"So it could suggest that having surgery, if you do find an ipsilateral ulnar nerve entrapment with dystonia...may help some patients have a substantial improvement after surgery, but not in general," Stephen said.

He noted that changing to a different instrument helped some patients, but even then over time dystonia developed with that instrument as well. Just over half of MFHD patients continued to play but were impaired.

After Stephen's presentation, a lively discussion ensued between him and Alberto Albanese, MD, Catholic University, Milan, Italy, one of the leaders of the poster tour. Albanese raised the possibility of better training in technique to avoid dystonia.

"I was thinking that probably appropriate training to some extent prevents future dystonia because I follow the director of the conservatory in Milan, and I discussed with him many times about how to train musicians from the very beginning to try to prevent dystonia," he said.

Although an interesting idea, Stephen said the study involved people who already had dystonia and explored what were predictors of worse outcome. But he agreed that better training may help avoid dystonia. "It may also give them the expertise to be able to still play to a decent level and adjust the repertoire," he said.

"Well, it depends on the severity because they try as much as they can because they love music. So for them to stop is really a problem," Albanese concluded.

There was no funding for the study. Stephen has reported no relevant financial relationships. Albanese has received speaker's honoraria from Allergan, Ipsen, Merz, Medtronic, and Zambon.

International Congress of Parkinson's Disease and Movement Disorders 2019. Presented September 24, 2019. Abstract 1345.

Musicians Well: Flautist Julianna Nickel on Focal Dystonia and Brain Surgery

So happy to see you featured Julianna Nickel!!! What I have always looked up to most about you is your straightforwardness when it comes to pointing out the truth/facts about focal dystonia, and for always seeing both sides of an issue clearly. Thank you for continuing to share your journey! 🎶💕

MHC: Beyond "You're Doing it Wrong" and Overuse

The Backwards Brain Bicycle: What Having Musician's Focal Dystonia is Like

This is what it's like having Musicians Focal Dystonia. Except after 20+ years of daily practice, performing, and refining your skills to a high degree, you can see why it's significantly worse when the brain pathways get even slightly crossed; sensory/touch goes haywire and motor control goes out the window.

All those years of learning become our enemy and everything must be deprogrammed and reprogrammed and even though you can adapt and modify, it's never quite the same or as smooth as the old pathway that was dug.

The hardest part is letting go/stopping your brain from yelling at your body, "You're going to fall!! I must do something!!" and thus it keeps trying to resort to your default control/old pathway that no longer works. It takes tremendous work to build a new pathway, a ton of failing and relapses, and for some it seems impossible or takes years because your body and brain lack enough plasticity to overcome the damaged circuit. Also everyone is affected to various degrees and it's hard to gauge severity levels.

We really don't know how deep the rabbit hole is, so that's why I'm against those who make the notion that they have the one and only cure, or a one-size-fits-all formula to overcoming the disorder. One way of doing things won't work for everyone, and not everyone can overcome it so easily or within the same time frame. Rehabilitating is an individualized process. And a true cure means it can be scientifically tested over and over again with a proven 100% success rate in each and every individual.

Auff! Frustrating to say the least. This comes very close to a great example of what it's like having this disorder. I know there are a lot worse things in life, but when it is your livelyhood and a part of who you are, it's catastrophic losing your ability to play. 💕

Colin Williams: On Muscle Tear Recovery

A wonderful post by trombonist Colin Williams who teaches at the Manhatten School of Music. He shares his experience overcoming a major embouchure injury - muscle tear. Please read the comment section full of questions, informative answers, including links. What I love most is the respect shown for Lucinda Lewis and the late Laurie Frink; both trailblazers in helping others in the area of recovery and injury knowledge. My heroes. Not to mention Dr. McGrail and Dr. Vander Kolk who have helped several musicians via muscle tear surgery when out of all options. ❤

 

Horn Players with Dystonia Group

Recently I started a facebook group for horn players with dystonia, you can find the link here:
https://www.facebook.com/groups/frenchhorndystonia/

Clinical and Phenomenological Characteristics of Patients with Task-Specific Lingual Dystonia: Possible Association with Occupation by Kazuya Yoshida

What a great read over Task-Specific Lingual Dystonia!!!

Note: I can't help but say, "Of course Focal Task-Specific Dystonia is associated with occupation....no doubt about it!"

https://www.frontiersin.org/articles/10.3389/fneur.2017.00649/full?fbclid=IwAR0zsxluSQs4JW9a0iAfXxmm0JU5jfJjGSa5vAZ1-CuI8fN11Yj2AnJT94w

Clinical and Phenomenological Characteristics of Patients with Task-Specific Lingual Dystonia: Possible Association with Occupation by Kazuya Yoshida

Britannica: Muscle Disease Pathology

This is one of the best overviews of pathologies of muscle disease, disorders, and weakness. Written by Walter G. Bradley, Richard Humphrey, Tudor Edwards, and Ronald A. Henson. It's well written so that most who are not medical professionals can follow. I hope you read it! The section over muscle nerves and neurons explains a lot about how weakness is not simply a result of overexertion. I really wish all of this was taught to musicians as a part of their education. Not only is it important, but I find it rather fascinating in general.

https://www.britannica.com/science/muscle-disease?fbclid=IwAR0lkrLChFbcz-p7SUp9abuV6DqTwge62PNu6A3gKnWuj9H3Bj65wPgHrgc

2019: Upcoming Research Looking for Musician's with Dystonia

1st opportunity...

This is a great opportunity for guitarist with focal hand dystonia to participate in actual retraining research!! More studies on rehabilitation strategies is so important!!! Don't miss this rare opportunity.

Recently I posted/wrote a blog post over Dr. Serap as a highlighted medical professional and professional musician. You can find it on my FB and Living with Embouchure Dystonia page and my blog. 

"Retraining Strategies in the Management of Guitarists’ Dystonia

Johns Hopkins University is conducting a study on guitarists’ dystonia retraining strategies and effectiveness. Researchers from the Peabody Institute and Department of Neurology are looking for guitarists with dystonia that affects their right hands as well as healthy guitarists who play classical and fingerstyle guitar. If you are interested in participating in this study or for more information, you can directly reach Dr. Serap Bastepe-Gray at 443-939-5578 or at sbastep2@jhu.edu."

2nd opportunity...

Research Seeking for Musicians with Focal Dystonia

We are a neuroscience research group from the Massachusetts General Hospital Institute of Health Professions. We are recruiting musicians diagnosed of focal hand dystonia or adductor spasmodic dysphonia (laryngeal dystonia) to understand how dysfunctional brain networks impact involuntary movements. MRI and transcranial magnetic stimulation (TMS) will be used to measure brain activation and networks over two visits. Your contribution will help researchers/clinicians improve understanding of this disease and assist treatment development!

Location: Massachusetts General Hospital - Martinos Center for Biomedical Imaging (visit 1) and Voice Center (visit 2).

Time: 2 visits over two days. 2.5-3 hr for each visit.

Compensation: $200. Travel expense coverage up to $500 based on distance.

Funding source: National Institutes of Health (NIH)

Study contact: Yi-Ling Kuo, ykuo@mghihp.edu

Musician's Health Collective Articles

Recently I've been reading a lot of Musician's Health Collective! The author Kayleigh also teaches yoga. I wanted to share a couple of her articles that I really enjoyed recently and can't help but feel strongly about. I agree with a lot of what she says....

"If It Hurts, You're Doing It Wrong" and other Confusing Proclamations

"When We Tell Clients that Their Bodies are Tight, Weak, Strong, or that They're Doing it Wrong"

"Teacher, Am I Doing it Right?" : Searching for Meaning While Teaching

Highlighted Professional Musician and Medical Professional

Highlighted professional musician and medical professional: Dr. Bastepe-Gray.

Please check out this article about her, titled, "Musician's Get Hurt A Lot: Paging Dr. Serap Bastepe-Gray" 

I wanted to highlight her since not many might know about her. Currently located in Baltimore. Her husband is also a fellow guitar teacher at Peabody. Please read the article linked on here, it is worth the read. Can't thank her enough for the substantial amount of work she is doing to further the field of music and medicine through John Hopkins. <3

Dr. Bastepe-Gray, a physician and virtuoso guitarist, moved to the United States from Turkey in 1992 to study spinal cord regeneration as a visiting scholar at the Medical College of Pennsylvania.

She graduated from the Peabody Conservatory with a bachelor and masters in Guitar Performance in 1996 and 1999. She holds an M.D. from Hacettepe University in Ankara, Turkey, and an MScOT from Towson University.

She is the Director for Peabody Occupational Health and Injury Prevention Program, serves on the Performing Arts Medicine Committee of the Maryland State Medical Society, the Research and Education Committees of the Performing Arts Medicine Association, and the Musicians’ Health and Wellness Committee of the International Society for Music Education.

She holds joint appointments at the Johns Hopkins Department of Neurology and the Peabody Conservatory.

Her expertise comprises pain and playing related musculoskeletal and neurological upper extremity disorders that affect musical performers.

In collaboration with Dr. Alex Pantelyat of the Neurology Department, she has assembled an interdisciplinary team of 70 experts to form the Johns Hopkins Center for Music and Medicine in order to promote research and help restore and preserve the proficiencies and talents of musicians all over the world.

Chiropractic Work on Neck Begins!

Day 2 of chiropractic work on my back, upper body - shoulders, neck, jaw! Feeling a ton of relief and tension reduced. 20 more sessions to go.

I know a lot of musicians with dystonia say chiropractic help doesn't work. But for me it is important since I've always carried a lot of tension and problems in my neck. I can't tell you how many times people, especially teachers, would tell me to let my shoulders down and I would reply, "I can't. It's not like I'm forcing them into this position. They are bulky and stuck this way. It takes an absurd amount of work to unwind them. It's also the whole upper body that's this way....it doesn't derive in the shoulders."

When I was 15 my neck muscles were so tight that I couldn't move my head/face to the right. My mother who was a nurse practitioner took me to a neurologist because she thought maybe it was something worse because massage and relaxants didn't help. The neurologist said it was too early to tell if I had cervical dystonia, but most likely not the case as it is rare to onset at my age and I didn't really have more of the symptoms associated with it besides lack of range of motion and zingers attacking the back side of my neck/head. The DYT1 gene also did not show up in my blood work, and he said I would have known in early childhood if this is what I had.

Nonetheless they wanted to play it safe and gave me 10 large needles of botox injections around the base of my neck and 2 months of deep tissue massage/trigger point and it went away.

However, the tension in my neck has always been there. I saw a chiropractor briefly in my mid-20's after I was diagnosed with embouchure dystonia, but only because I threw my back out. The only work they did was on my lower back and hips. However, I never thought of using chiropractic work as a means to help with the tension in my neck and upper body.

That is why I've decided to try it now. Especially after I was informed that it is part of what is getting in the way of my recovery. I know a lot of people don't believe in psychics, but I was told by a medical intuitive that the tension in my neck and upper body has always been due to my spine. That it needs a lot of adjusments around my neck to fix it because it's never been addressed. He said it's been limiting me from recovering from the rest of my embouchure dystonia, that it was blocking my jaw movement, including nerves, and contributing to my lack of sensory feedback. This along with continuing my current rehabilitation strategies should show results.

As you know, I already work hard on relieving tension in my upper body through upper back stretches, shoulder, neck, tongue, and facial stretches. My primary form of rehabilitation has been (deprogramming and rebuilding) relieving tension and then finding a window of opportunity to get leverage and work on rebuilding a new neuropathway in that area that feels most natural, along with everything else - modifications, adaptations, etc. The reliving of the tension has contributed to a lot of my recovery, so I'm hoping the chiropractic work will as well.

Right away the chiropractor told me I need a lot of work on my neck and shoulders. He could tell it was pulling on the right side of my face.

Wish me luck!! I wish you could feel how much relief I feel in my shoulders and neck currently. It's surprising how much additional tension is lingering in there

Participation in a Research Study on Embouchure Dystonia - University of Washington - St. Louis

I don't know why I forgot to post this ages ago! I was flown out to St. Louis on January 3rd, 2018 to participate in a research study on embouchure dystonia conducted at the University of Washington St. Louis, by Aimee Morris and neurologist Dr. Joel Perlmutter.

The Dystonia Coalition team also happened to be there conducting research, so they took blood samples and videos of my playing to archive!

While in St. Louis, I was happy to visit my friend/mentor/horn player Thomas Jostlein who is the associate Principal Horn of the St. Louis Symphony, and speak with another horn player about the subject of embouchure dystonia.

Even though it wasn't a vacation, I really enjoyed the time away from Denver. I really needed the trip away. The photo above is a view from the hotel room. I spent most of the night sitting next to the window, eating an awesome dinner, looking out at the scene of the arch with all the city lights. I listened a podcast interviewing Marty Hackleman who discusses near the end of the interview his recent diagnosis of embouchure dystonia. I also started reading a hefty pile of  books (photo below) I checked out from the library before I left Denver.

I can't tell you how relieving it was to talk to Dr. Perlmutter and ask him all kinds of questions I had, such as why Deep Brain Stimulation (DBS) surgery isn't allowed on musician's with embouchure dystonia in particular in the United States, when it is quickly gaining a reputation for curing musician's with hand dystonia...or even the use of Transcranial Direct Current Stimulation (TMS). Forgive me for not explaining the jargon well or things more thoroughly, as it is sometimes all greek to me as well. He was explaining to me how the brain registers musician's dystonia in both hemispheres and why it is not as easy to target the exact location during surgery as it is when conducting surgery for Essential Tremors which can be pinpointed. It's another reason why the experimental surgery on musicians is not approved in the United States. Most of the research using DBS and/or TMS is being conducted on more life-threatening forms of neurological disorders.

It was relieving to also work with Aimee Morris as she is also a french horn player who has experienced a physical setback in the past; Bell's Palsy. She is passionate about her research, and did a fantastic job of organizing everything from booking my flight, hotel, transportation, itinerary, and meals. Dr. Perlmutter performed neurological tests, and Aimee did the fMRI imaging on my brain, and conducted the playing tests/recordings, and the questionnaire.

Here is an image of my brain I was able to take home with me. Sorry for the blurriness, as I took a picture of it from my phone. It's not often you get to see images of your own brain up close.

It was a whirlwind day of tests, blood samples, questions, playing, recording, trying to not fall asleep in the fMRI machine for an hour, and video taping, that I can't remember all the details, nor do I understand exactly how all of this was measured even though the research article explains it below.

I just know I was ecstatic to be contributing to the research as a patient, and so proud and happy to see more neurologists within the United States becoming interested in contributing to the research being done on not only musician's dystonia, but in particular embouchure dystonia, which we don't have as much research on as hand dystonia.

Thomas was also interested in contributing, so he participated as a non-dystonic horn player to the study later on. Which moved me and made me really happy hearing he did that!

Anyways! Here is the link to the research publication on NCBI. You will need a subscription to read it. I wish I could give a huge thank you to Aimee, Dr. Perlmutter and the rest of the research team. I know I'm not the only musician involved, but it meant a lot to finally participate. It makes me feel like I did something important to help further the efforts and information on the disorder somehow.

Quantitative, Clinically Relevant Acoustic Measurements of Focal Embouchure Dystonia - Morris, A.E; Norris, S.A.; Perlmutter, J.S.; Mink, JW

Although the photos below are unrelated, I wanted to add them here, since...why not!....there's already a photo of my brain above. Why not throw in a couple x-ray shots of my face since we're getting up close and personal. These are from my neuro-dentistry exams conducted in late 2014. Again, not the greatest quality because I took them on my phone.

Rehabilitation Methods for Embouchure Dystonia VS Standard Performance Technique Methods - Including Jacobs Method

It would seem common sense that when one is facing embouchure dystonia or even another type of injury, that the rehabilitation process would require both a different approach and mindset focused on the body, rather than focusing on standard techniques to facilitate recovery efforts. Yet, we unfortunately see so many turning to standard techniques to alleviate their symptoms. Even worse, we see teachers and professors trying to help their students the same way.

It is is not anyone's fault that the symptoms of embouchure dystonia are mistaken for bad technique or faulty mechanics (which it is most certainly not the case) because the symptoms are similar to most setbacks in the early stages.

It would help to understand what having embouchure dystonia is like if more musician with the disorder were open about explaining further details and consistently reminding the public that it is a neurological disorder; or to put it in layman's terms - similar to a sensory disorder. Nonetheless, any setback should be approached with less focus on technique.

As Albert Einstein says, "We cannot solve our problem with the same thinking we used when they were created." 

That is definitely not meant to imply that embouchure dystonia is due to negative reinforced thinking, a mental or emotional block, paralysis by over thinking and perfectionism,  or some type of psychogenic issue; which is unfortunately the most common misconception thrown around.

The quote is simply meant to imply that our focus now must be shifted to what the body is telling us and what we can learn from it. In this way our mindset and approach changes to recovery-mode.

In order to become better attuned with our body and what it is asking of us, we must take on what some consider mindfulness, or what I call body awareness. It is an awareness of not what signals or lack-there-of (sensory feedback from our body) are being sent to us as we adapt. It also involves studying our body functions as a whole which can be understood through learning about body somatics, body mapping, and anatomy. To take it a step further, it helps to learn about other physical traumas and diseases to the face, teeth, glands, nerves, muscles, tissue, and upper body.

In brass playing we are limited to being taught about one muscle called the obicularis oris, and sometimes the buccinator and masseter muscles if lucky. Even then, there is little known about what all is actually involved in the use of an embouchure when it comes to form and function. The embouchure is a complex wiring and intricate system involving many small and large muscle groups of the upper body, face, tongue, nerves, jaw joint, skeletal/teeth structure, and lungs. There are many who avoid going into further detail or even bringing the subject of embouchure form and function into lessons.

The teachers that do bring up embouchure form and function tend be very strict about how an embouchure should look and move, and this is usually tied heavily to Farkas studies. Most often their students are the ones subjected to embouchure changes (sometimes drastic changes when unnecessary), which is seen as one of the many possible gateways into developing embouchure dystonia.

With embouchure dystonia, it helped me to deprogram the entire embouchure. Although if feels like the the signals from the brain are causing overwhelming and unpredictable muscles hyperactivity, it paradoxically allowed me to begin understanding how my body functions as a whole through accepting, observing, and exploring the dysfunctional movements that where happening.

I learned how my dysfunctional embouchure functioned in order to start deprogramming "playing mode" and disassociating the "embouchure setting", and then rebuilt from the ground up.

Throughout rehabilitation, it is important that the mindset shift to one focused on curiosity, exploration, with the determination to embrace the hard work, while continually loving and accepting the sound coming out of our horn despite the lack of control and stability.

In order to really understand the disorder as a whole, we must dig deep to find knowledge to support our understanding of embouchure dystonia, as there are few publically accessible and promoted  resources; scientific research, case studies, information on non-traditional and traditional treatments, knowledge on causes and cures of similar maladies or trauma to the face and upper body, and body somatics in one place.

We also must be open yet objective to everyone's views on what has helped or not helped them find progress or recovery, and most importantly we must be in a good place psychologically in order to not rush rehabilitation and risk creating a secondary injury as a result.

Do not underestimate how important a healthy environment can be as well; i.e. not performing in a high demanding group or continually doing performances in the beginning stages that would take away time from investing in recovery efforts and continually putting stress on an unstable embouchure. However, not everyone can step away due to performance demands, commitments, and even harder when it is what provides ones primary income and sustains their career and reputation.

Almost every musician you speak to who has dystonia will bring up the fact that musician's dystonia is a very individualized experience and requires a personalized recovery plan or at least one that adapts to their needs as they improve. The reason they say this is because the truth is that only they know their body better than anyone else ever will. Only they can navigate through the complex and messed up signals being sent to their embouchure, can tell from day-to-day what symptoms have surfaced and which ones are a more subdued over time. Most importantly, they decide what works and doesn't work best for their own recovery.

The most noticeable symptom with having embouchure dystonia is the lack of feedback you receive from touch/sensory. The best example that I can give is that there is no sense of where your mouthpiece should set on your lips (referred to as the "sweet spot" sometimes), no feeling of grasp on the surface of notes, and an overall foreignness in the face while playing...however, this is not to be confused with tingly or needle/prickly sensations...more like a dull lack of sensation, a lack of familiarity, and no ability to taste the notes. The reason I avoid tingly feelings, is because that is usually associated with a different type of injury such as nerve damage, nerve entrapment, muscle tears, or other more severe health issues.

I constantly compare embouchure dystonia to a sensory disorder. Both dystonia and sensory disorders involve a traffic jam of signals from the brain, and both are neurological-based, yet completely different disorders.

I have a weird description of what dystonia feels like. I liken it to a leg that has fallen asleep (without being aware of it). When you try to stand up and walk, you are suddenly surprised at not knowing what part of the foot to apply pressure to, and therefore your knees begin to buckle under because you have no sensation to guide your movement of the entire leg, and you need to slow down and think about what you are doing in order to keep your balance. All you can think about is how much lack of control you have and 90% chance you'll fall flat onto the floor, so you start panicking. In the meantime, there is someone hitting your knee with a reflex hammer every time you decide to move, which makes it even more frustrating and confusing!

Like I stated above, it is hard to grasp just the surface of a note, let alone hold one out. There is definite sense of foreignness and for some they can't even distinguish the feeling of vibration, vitality, or flexibility in the embouchure.

This is why no set detailed rehabilitation method applies to all, nor can cure all. That is not to say recovery is impossible, as there are a few of us who have, and progress is definitely possible if you put in the time and effort.

How is the focal dystonia individualized you might ask? Does it really vary that much? Yes, in the smallest most delicate subtle movements. It also depends on specific symptoms, and what multiple factors may be contributing to that individuals onset of dystonia. It also depends on what effects them the most, and what helps too.

One person might find that using a sensory trick by touching an area of their face while playing reduces or eliminates a tremor on one specific note, or it could reduced in a specific range, or it could only be when they are playing loud or only when playing soft. A 2nd person might find that no sensory trick or geste works, and after trying a medication (that didn't work for the previous person) works for them and they can actually return to playing at a decent level. A 3rd person might have cervical dystonia or oral mandibular dystonia and it led to them having embouchure dystonia symptoms (coming about as a secondary disorder is very rare though). A 4th person might find that their dystonia symptoms reduce significantly after taking a nutrient supplement.

When it comes to embouchure dystonia there are common symptoms that occur; tremors, twitches, air leaks, muscle pulls/jerks, jaw closure/jaw lock/aperture clamping. But when individuals describe their symptoms in detail, about when/where/how they occur, it can vary greatly. Not everyone has all of the symptoms, and not everyone has the same severity of embouchure dystonia symptoms, and not everyone has the same reaction to different treatments.

This is why it is so hard to diagnose. There is also the issue of misdiagnosis. If someone who claims to have embouchure dystonia and is easily recovered within a month, a few weeks, or even a year by focusing on only technique building or solely emotional therapy, it is most likely a misdiagnosis. Also another sign of misdiagnosis is if the musician's core issue is pain. Embouchure Dystonia is not overuse syndrome and does not elicit pain. Unfortunately a majority of musicians who have embouchure dystonia do not make it to a complete recovery, and even fewer return to playing professionally. Most that do report full recoveries spend years or a lifetime rebuilding their neuropathways and tend to have tried or used a multitude of treatments to overcome it.

With all of that said, I want to discuss the importance of why standard performance technique methods should not be used on musicians with embouchure dystonia. I should say that, it isn't that we cannot use certain techniques, but it is the manner of which it is applied.

When you have embouchure dystonia, you can not continually practice working on articulation, range, *air control, dynamics, efficiency/accuracy, endurance, speed, scales, repertoire, etc. Anything that requires repetitive practice/tasks will only further develop the dystonia. Intense playing or anything that requires endurance or advanced skills will only lead to over-exertion. Working on refining our motor skills will only create more tension and we risk creating an injury on top of already having a disorder.

When you have embouchure dystonia, the focus cannot be on anything resembling the Arnold Jacobs Method. "Singing the music in your head as you play....singing through the phrases...singing the pitch...wind and song."

Although I understand the intention of singing transcending technique (like a sensory trick) and how this might help people with embouchure dystonia not focus on the symptoms. However it does not help to completely ignore the dystonia symptoms, as this makes things worse. Also not to mention the fact that the symptoms can't just be "played through", as musicians with embouchure dystonia lack complete control of their playing and don't even have the ability to sometimes hold onto a note for 0.47 of a second.

Visualizations tend to help musician's sometimes. However, I am talking about manipulatives such as mirror boxes for hand dystonia sufferers, or visualizing blowing on hot tea in order to trick the brain into thinking it is doing something else.

That is not to say this method can't work in the later stages near the end of recovery, because I really do value the Jacobs Method and think it should be used more often in pedagogy practices for non-injured and non-dystonic musicians. But for a majority of the process it should be avoided.

Also a huge thing to mention here that Jacob's method is often used to re-establish correct habits via a focus on purely musicality. Embouchure dystonia is neurological. Meaning it has nothing to do with correcting bad habits, our musicality, level of technical mastery on the instrument, our way of thinking - positive or negative, nor is it about overthinking or perfectionism, or have to do with a lack of correct focus on a more musical-based mindset.

It literally has to do with the brain signal(s). Imagine a CD that has a tiny scratch on it, yet this tiny scratch happens to be in a spot that causes the whole CD to skip over several songs. It is like a domino effect or the domino theory; when one signal gets even slightly messed up, the rest comes tumbling down.

My neurologist brought up a theory that makes the most sense to me, even though no one knows what causes dystonia. He said that the human brain might be attempting hyper-efficiency in order to make things easier by streamlining the refined motor skills, but instead this backfires and turns into a maladaptive trait.

As musicians we refine our motor skills over years of repetitive practice, and the brain starts to refine the signal being sent out and our playing becomes more efficient. A scan of the brain's body map of a healthy musician's hand while playing guitar or piano will show the brain recognizing each finger as an individual limb, whereas a scan of the brains body map of a musician with hand dystonia has shown the brain clumping some of the fingers together into a big blob/blur.

Musician's with hand dystonia have a lot more research on their disorder, devices to help with retraining, and sensory tricks. What does help though as a sensory trick with embouchure dystonia in some cases is touching the area of the face where the tremor is happening while playing, and even sometimes mentally imagining they are touching the area where the tremor is happening reduces it (usually a sign of a more generalized dystonia though if that happens). Some find that ice-packing the face somehow allows them to temporarily regain playing abilities....but again, this is dangerous to work with and should be done carefully as it can easily cause other injuries or mask an already existing injury if you are not sure what setback you have. However, musicians with severe embouchure dystonia, sensory tricks do not always work, and the embouchure is more complex and less understood than a hand.

It's as one of my friends said, "The muscles in the face are meant to eat, chew, and talk, not to blow into a tiny mouthpiece and accurately hit a high C over and over again. It is the strangest body part we could use to create music. It an abnormal use of those muscles."


This brings me to my next point. With embouchure dystonia, the focus cannot be on standard embouchure formation function and correction. I won't write much on this because you could write a book on embouchure form and function. But for those who do not know about it, or haven't read Farkas's studies on the art of brass playing and horn playing, there are some commonalities found among healthy and/or professional embouchures. To put it in a very short description - there are two extremes of the embouchure; a full pucker (corners brought all the way inwards and lips moved outward), and a full smile (where the corners stretch outwards towards the cheeks and the lips become spread thin/flat).
An ideal healthy embouchure should be somewhere in between the two extremes. The corner muscles of our lips hold the bulk of the strength and allow the aperture to be flexible in adjusting size (the small opening between the lips). When the corners are working properly, the chin should remain flat and not bunched. The chin can be flattened by bringing the jaw down (and in lower playing - down and forward). If the chin is bunched it causes a lot of problems later on, and especially dangerous as it puts more pressure onto the upper lip which is spread thin, whereas the lower lip needs to provide the stability. The flatness of the chin allows for more flexibility and fluidity when crossing between registers, and it allows us to adjust the lower lip. With the embouchure set up this way we can also hit the center of the pitch more accurately...or as some say the lower part of the note. This ties into air.

With embouchure dystonia even putting the horn up to the face or going into "playing mode" or "embouchure setting" will cause the dystonia to kick in and go haywire. Like I stated above that we must disassociate this link and deprogram our entire body from recognizing we are playing the horn. I go over this in great detail in the video further down and show examples.

*When you have embouchure dystonia, the focus cannot be on standard breathing techniques or exercises (with some exceptions). Again, for those who do not know about standard breathing techniques or exercises, most often in our university studies we are taught about how to properly intake air and exhale it with fluidity while aligning with the metronome.

You hear a lot about hot air, breathing from the lower abdomen and not raising the shoulders, opening the throat, imagining things like inhaling a basketball, sometimes using words like "ho" or "toh", practicing breathing exercises with the metronome and increasing your lung capacity.
Learning about the anatomy of the diaphragm, learning about the difference between mouth/corner breathing and nose breathing, recognizing the sound of proper breathing, and sometimes use breathing devices to train and measure progress

We also learn about how to exhale well supported air and focus it into a solid stream or like a jet-stream or thread of air directed into the mouthpiece, reaching out past the bell and filling every corner of the room, focusing on filling the entire room up with your sound.
We learn about how to use our air to bend the note (note bending/air bending pitches) down (also why the chin being flat and brought downwards is important) digging into the bottom of a pitch against the resistance in order to find the center of the note where it rings and you can hear the overtones. ...again...could write an entire book on this subject.

We also are taught how to use the tongue to initiate clean articulation at the beginning of a phrase on the front of our notes. This ties into tonguing...another area I will save for later. But tonguing must be left out when recovering from embouchure dystonia, at least in the beginning stage and middle stages until the embouchure becomes more functional.

What people don't realize, is that even with strong air support, we are still exerting muscle control and using proper air isn't just all about air, or just all about muscle control and flexibility...it requires both, and there is a delicate balance between the two. I will talk more about that further below.

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However, when it comes to embouchure dystonia rehabilitation, it is important to not focus on any of the standard techniques listed above. It must all be cleansed away out of your thoughts, as if you were brainwashed and need to undergo an exorcism of some sort. Do not follow or listen to the following Farkas diagram (I did the courtesy of crossing everything out for you and added a not-allowed sign...a bit over the top perhaps...but you get the point). My primary point is that standard technique can only be applied to functional embouchures. Put that stuff away and out of your mind for years to come...it can only be reintroduced way further down the road when you are almost fully recovered.

Whenever a musician who does not have dystonia tries to use conventional standard methods to address your embouchure dystonia symptoms, ignore everything they say, as it will only make things worse. Embouchure dystonia is so far beyond dysfunctional that there isn't a word that exists for it. If dystonia had an ounce of functionality, then normal standard conventional methods/techniques would fix everything easily.

With embouchure dystonia, we must focus on completely letting the embouchure be loose and letting the air initiates the sound before all else; before the tongue, before the embouchure sets, before articulation, before we even try to control it. It is about the air passing through the aperture in its most basic and relaxed natural way, before everything else goes into action.

Most importantly, we do this in order to deprogram the embouchure. Think of it as uninstalling software. Letting air swell up in our cheeks, in our corners, even frowning our corners if have to. We must practice using different muscle groups than what we are use to, and especially ones that release tension and oppose the normal setting we are use to. The goal being to completely deprogram, then slowly start reprogramming. It is a difficult thing to navigate and requires a lot of body awareness and most of journaling/documenting your observations.

I also want to mention that in standard air technique, there is a delicate balance that must be recognized and kept aware of (this actually applies to both musicians who have dystonia and those who don't). That balance is: 1. Is the air guiding the direction of your embouchure? Is it guiding the function of the embouchure muscles and directing them? OR 2. Is the embouchure/aperture guiding the direction of the air? Is it controlling or overly supporting the sound?

Ideally we want a balance of both. But, the air should be the predominant guide always. However, it is not always easy to tell because we are not usually hyper aware during playing or have time to think about it while in action. Usually when you are a normal (non-dystonia) you just play and trust the feeling of ease and comfortability, and sometimes we get too caught up in the feeling that "It feels natural"  that we forget this delicate balance and how easily the tendency to start controlling the air/sound with solely the embouchure starts to sneak in and cause problems.This is where we can sometimes get in trouble if we don't actively try to keep track of what is going on with our body/face during intense playing periods of time.

I'm not saying that this is what causes embouchure dystonia at all...please don't misinterpret what I'm saying. What I am saying is that the focus on letting the air guide the embouchure is one of the several methods/tools we use to re-establish a production of sound out of the instrument, to deprogram, and then reform a connection. But even so, the method requires tweaking, which I talk a lot about it in this video I did over Beginning Rehabilitation Strategies below:

With FTSED our embouchure is easily thrown off by even the action of bringing the right (or left...whichever is predominantly used in playing) hand up to the face (sometimes not even with the mouthpiece). It is because our muscle memory/programming has developed a embouchure setting over years of practice and growth. Eventually when you go to play, the embouchure naturally sets (also called "embouchure setting"). I call this "Playing Mode". It is because we have this embouchure setting that is programmed to react instantaneously and the signal from the brain goes into "set for playing mode." But when the signal is damaged, such as in embouchure dystonia, how can you deprogram the reaction?

For me, the key was to take away everything; the horn, the mouthpiece, even the action of bringing your dominant arm(s), hands, and body into playing posture.

Sometimes focal embouchure dystonia is so bad it carries over to some of these basic actions. The answer is to bring it all back to simply practicing passing air through the lips gently and practicing using opposite movements in our embouchure than what we are use to using. This is most important in the first month(s) and year of rehabilitating. Some practitioners will have you focus on blowing on a windmill, feather, blowing through a straw, while relaxed. Just re-focusing on letting the air pass through the lips without going into "playing mode."

For some who start rehabilitating, this is the key focus in overcoming their embouchure dystonia, whereas others will require more focus on other areas of recovery once they've re-established a sound. That is why I believe some call it "air dystonia" or say that focusing on their air was key in recovery. It continually plays a role throughout rehabilitation; constantly letting the air guide your playing, however, there are other areas that require equal attention depending on your individual symptoms, and I don't want to give the impression that it is ONLY about this act of blowing gentle air support. Recovery is like peeling layers of onion and you've got 99 million problems, and air isn't just one.

Another huge fact that is overlooked is that when an embouchure sets, most of us bring our chin forward a little bit to align with the mouthpiece if we are downstream players (especially when dropping into the very low register on horn) and opens the aperture up more, thus, the sternocleidomastoid muscle along the sides of our neck flex in order to help support the jaw muscles and movement (even if minimal movement). Go ahead and try free-buzzing high and low while keeping one hand or a couple of fingers on the sides of your neck and you will feel them subtly flex. You can try this while playing too and feel it. Try touching both sides of your neck, and touching different areas of your upper body, face, and neck to locate muscles that activate when playing.
Keep a journal of it and what you become aware of....ex. if one area is more tense than another.

I can't say this for sure, as this is only a speculation. Sometimes I think the sternocleidomastoid muscle is overactive or tension more noticeable in certain people due to their individual anatomy or because the nerve connected to the muscle is easily disturbed. I believe this muscle along with the masseter causes over tension in the neck area when playing and sometimes leads to lock jaw, TMJ, or even just a basic restricting of the air flow because the neck tenses up. I know for me, I have to work on a relieving tension in my neck a lot in order to loosen up my jaw and then facial muscles.

However, that is not to say that muscle tension isn't necessary (every muscle in playing requires one to flex, and another to oppose it, as that is how the body works in balance - antagonist and agonist muscle groups), as it is naturally flexed, but that it often tends to be overly tensed when you have embouchure dystonia and I in particular have to take extra steps to massage and relax my upper body muscles.

I cannot stress the importance of focusing on relieving muscle tension (created by the dystonia/ muscles fighting/ signals clashing) through a variety of means, and the re-direction of letting the air stream pass through the mouth gently with no muscle control. When sound is reestablished, then focusing on practicing opposite muscle movements becomes an equally important area. I cover this in the second video below.

This post has gotten quite long and I could write much more, but will stop here. If you have any questions, comments, or topic suggestions, please let me know and I will respond! Hope that this provided some insight into the neurological disorder Focal Task-specific Embouchure Dystonia.

New Website! - Focal Embouchure Dystonia

I finally designed a website to link to my blog thanks to a friend recently advising me to do so. I still have a lot more work to do on it, but maybe this will help me reach my advocacy goals and spread more awareness, and provide guidance. Thank you to those who take the time to check it out!

I'm also in the process of updating my blog and rewriting important blog posts, editing, and adding new sections. Thank you for your patience as I go through the process of cleaning house on my blog.

- Katie

https://www.focalembouchuredystonia.com/

Month of June Resource Links

Hi everyone! Please forgive me for not tending to my blog lately. I'll be taking some time away this summer to focus on other areas of my life. I do promise though that I won't forget to come on here and update things at least every 2 months at the latest, and hopefully by either September or October I will be diving back into focusing on my blog! I have been going through a lot of changes lately and excited to write more about that later. I just celebrated my birthday...since it is in early June, so thought I'd stop by and update things too while I'm on cloud 9. Also apologies to those who have written to me and I haven't replied back yet. I will be getting around to that tomorrow! :-)

Here are three links I came across recently that I found informative and interesting....

The first one is an article published in the Australian Dental Journal back in 2002 called Specific Orofacial Problems Experienced by Musicians.

Secondly, an article by Medical News Today called "What Causes Your Lip to Twitch?" which covers the different types of reasons a person might experience facial tremors or spasms. This isn't meant to say that what you're experiencing isn't embouchure dystonia if you think you have it, but to hopefully open our eyes to other disorders or situations that cause tremors, and what is typically done in those individual cases, and also most of all how important it is to get diagnosed by a neurologist in order to rule out any of these other possible health concerns.

Lastly, a post by Dr. Kenneth Casey at the Department of Neurological Surgery at Wayne State University in Detroit Michigan over Hemifacial Spasms (spasms in the face)....published on the Benign Essential Blepharospasm Research Foundation (BEBRF) website. This one is great because it covers in more detail the neurological-related reasons of how spasms/tremors occur, and the characteristics of each one. Again, not posting this to try to prove that no one has embouchure dystonia, but the importance in understanding other disorders and causes of involuntary muscle contractions. Also studying these other maladies can help us learn to pinpoint similar and varying characterstics of embouchure dystonia, in both symptoms and treatment.