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Recovery from task specific embouchure dystonia in brass players: a multiple case study
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Recovery from task specific embouchure dystonia in brass players: a multiple case study
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Content
Recovery from Task Specific Embouchure Dystonia in Brass Players:
A Multiple Case Study
by
Douglas J Shabe
A Dissertation Presented to the
THE THORNTON SCHOOL OF MUSIC
UNIVERSITY OF SOUTHERN CALIFORNIA
Submitted in partial fulfillment of the
Requirements for the degree of
DOCTOR OF MUSICAL ARTS
Music Teaching and Learning
May 2019
Advisory Committee:
Dr. Peter Webster, Chair
Dr. Beatriz Ilari
Dr. Susan Helfter
ii
Dedication
To every musician affected by focal dystonia. You are not alone.
iii
Acknowledgements
First and foremost, I would like to acknowledge my wife, Dr. Claire Fedoruk. Without
her unwavering support and patience, I never could have accomplished any of this. Secondly, I
would like to thank Dr. Peter Webster for his valuable input and encouragement, and Dr. Beatriz
Ilari and Dr. Susan Helfter for their willingness to serve on my committee. Finally, I would like
to acknowledge all of the amazing people, professors and students that I met and worked with at
the University of Southern California. All of you made my time there incredibly enjoyable and
valuable.
iv
Table of Contents
Dedication ...................................................................................................................................... ii
Acknowledgements ...................................................................................................................... iii
Abstract ...................................................................................................................................... viiii
List of Tables ................................................................................................................................ ix
List of Figures ................................................................................................................................ x
Chapter 1 – Introduction ............................................................................................................. 1
Organization of Chapter 1 ....................................................................................................... 3
Purpose .................................................................................................................................... 3
Need ........................................................................................................................................ 4
Professional Musicians ....................................................................................................... 4
Music Students and Amateur Musicians ............................................................................. 5
Research Questions ................................................................................................................... 6
Definitions .................................................................................................................................. 7
Background for This Study .................................................................................................... 11
History of the Identification of Dystonia .............................................................................. 11
Diagnosis............................................................................................................................... 13
Focal Dystonia in Musicians .................................................................................................. 13
Personal Perspective ......................................................................................................... 15
Triggering Factors and Commonalities ................................................................................ 15
Personal Accounts by Performing Musicians ....................................................................... 17
Marie Louise Neunecker…………………………………………………………………17
Joanna Cowan White……………………………………………………………...……..18
Michael Mulcahy…………………………………………………………………...……18
Peter Iltis…………………………………………………………………………………19
v
Joachin Farias…………………………………………………………………………….19
Alex Klein………………………………………………………………………………..20
David Vining……………………………………………………………………………..20
Organization of Remaining Chapters ................................................................................... 20
Chapter 2 – Review of Literature .............................................................................................. 22
Introduction ............................................................................................................................. 22
Neurology of Focal Dystonia .................................................................................................. 22
Etiology .................................................................................................................................... 29
Genetics ................................................................................................................................. 29
Injury ..................................................................................................................................... 30
Overuse ................................................................................................................................. 31
Psychological Factors ........................................................................................................... 33
Combining Sensory and Psychological Factors .................................................................... 36
Non-Dystonic Tremors ........................................................................................................... 37
Rehabilitation .......................................................................................................................... 38
Medical ................................................................................................................................. 38
Non-Invasive Medical Procedures ........................................................................................ 39
Behavioral ............................................................................................................................. 40
Pedagogical ........................................................................................................................... 42
Summary .................................................................................................................................. 46
Chapter 3 – Methodology ........................................................................................................... 49
Delimitations ............................................................................................................................ 49
Design ....................................................................................................................................... 49
External Subject Selection ..................................................................................................... 50
Institutional Review Board .................................................................................................... 51
vi
Interview Question Development and Data Collection ....................................................... 52
Scripted Questions ................................................................................................................ 52
Data Collection ..................................................................................................................... 54
Trustworthiness of Data ........................................................................................................ 55
Data Analysis ........................................................................................................................... 55
Summary .................................................................................................................................. 59
Chapter 4 - George Jones Case Study ....................................................................................... 61
Introduction ............................................................................................................................. 61
Background ............................................................................................................................. 61
Personal Story with Dystonia ................................................................................................. 62
Precipitating Factors ............................................................................................................. 62
Analysis of Precipitating Factors .......................................................................................... 65
Recovery ............................................................................................................................... 68
Analysis of Recovery Factors ............................................................................................... 74
Conclusion ............................................................................................................................... 76
Chapter 5: Joseph Walker Case Study ..................................................................................... 79
Introduction ............................................................................................................................. 79
Background ............................................................................................................................. 79
Personal Story with Dystonia ................................................................................................. 80
Precipitating Factors ............................................................................................................. 80
Analysis of Precipitating Factors .......................................................................................... 84
Recovery Process .................................................................................................................. 87
Analysis of Recovery Factors ............................................................................................... 90
Conclusion ............................................................................................................................... 93
vii
Chapter 6 - My Experience ........................................................................................................ 96
Introduction ............................................................................................................................. 96
Background ............................................................................................................................. 96
Personal Story with Dystonia ................................................................................................. 97
Precipitating Factors ............................................................................................................. 97
Analysis of Precipitating Factors ........................................................................................ 102
Recovery ................................................................................................................................. 104
Analysis of Recovery Factors ............................................................................................. 107
Meaning for This Study ........................................................................................................ 109
Chapter 7: Conclusions and Implications .............................................................................. 111
Conclusions ............................................................................................................................ 111
Implications for Further Research ...................................................................................... 116
Implications for Practice ...................................................................................................... 117
References .................................................................................................................................. 121
Appendix A – IRB Approval Form ......................................................................................... 133
Appendix B: Further Resources ............................................................................................. 136
Appendix C - Scripted interview questions ............................................................................ 138
Appendix D: George Jones Interview ..................................................................................... 139
Appendix E: Joseph Walker Interview ................................................................................... 156
viii
Abstract
The world of the performing musician is one of high pressure that comes from the
expected high standards they have to live up to and that they expect from themselves. The
pressure that musicians put themselves under can manifest itself in physical problems such as
focal dystonia. Knowledge of the contributing factors and potential rehabilitation strategies
cannot only give players hope for recovery, but also the information to prevent it from happening
in the first place. This dissertation presents a multiple case study of two performing brass
musicians who developed focal dystonia of the embouchure, also known as embouchure
dystonia, combined with an autoethnography of the author’s experience of battling embouchure
dystonia, and our attempts at recovery. Extensive research into the current state of focal dystonia
research was done to establish a base of knowledge. That knowledge was used to develop
interview questions for the two participants and interpret the findings of the qualitative data
collected. The research knowledge, as well as the qualitative data from the case studies, was also
used to interpret the author’s experience. The author determined that behavioral, environmental,
and psychological factors were of prime importance in the subjects’ development of focal
dystonia, and that modifications of those factors are essential for the best chance at recovery.
Keywords: Focal Dystonia, Embouchure Dystonia, Music Teaching and Learning, Music
Education
ix
List of Tables
Table 1: Precipitating Factors…………………………..p. 58
Table 2: Recovery Factors……….……………………..p. 59
x
List of Figures
Figure 1: Cerebral Cortex-Functional Areas………………………….p. 23
Figure 2: Sensory Homonculous…………..………………………….p. 24
Figure 3: MRI of the brain showing overlap of sensory inputs..…….p. 25
Figure 4: Proposed Abnormal Feedback Loop.……………………….p. 27
Figure 5: Dystonic Feedback Loop………...………………………….p. 34
Figure 6: Sensory and Psychological Triggering Factors.…………….p. 36
Figure 7: Emerging Code Evolution……….………………………….p. 57
Figure 8: Orbicularis Oris………………….………………………….p. 64
Figure 9: Levator Labii Superioris ………...………………………….p. 83
Figure 10: Muscles of the Head, Face, and Neck …………………….p. 98
1
Chapter 1 – Introduction
Consider the following scenario:
You have spent years of your life refining the skills necessary to play your brass
instrument at a high level of proficiency. The thousands of hours spent in the practice
room have paid dividends, and now you are either at, or approaching, the top of the
highly competitive world of professional music performance. But one day as you are
practicing, you notice one pitch that just does not feel right. The note will not center,
perhaps the tone is not as free and resonant as usual.
All musicians have been taught that if something is not sounding good, you need
to spend extra time practicing that problem area. For brass players, the long accepted
practice is to use long tones. So you begin to focus on the problem note. Long tone after
long tone, but it does not improve. You think to yourself, “Hmm, I guess I’ll just have to
work harder on this in the practice room.”
The day’s rehearsal begins and you are looking forward with great anticipation to
another day of great music making. But in the back of your mind you are still thinking
about that problem note, and, to make matters worse, the repertoire that you are playing
that day has a very exposed section where that note figures prominently in your part. The
entire time you are obsessing about that one note, not being in the present for all of the
other music that you have to play before that exposed moment. You might even play the
note quietly to yourself, perhaps into a practice mute during the rehearsal, in hopes that it
will rectify itself before your big moment.
The anxiety builds as the moment of truth approaches. The passage comes and
goes. It sounded fairly good, but not up to your standard. Nobody else seems to notice,
but you know that something isn’t quite right, and you spend the rest of rehearsal
2
thinking about it. “Did my colleagues notice? Are they just being polite and not saying
anything,” are some of the thoughts that go through your mind?
The next day you wake up with great resolve to tackle the problem. More work,
more long tones, and the problem only gets worse. After several days of this, you begin
to notice that other pitches are now starting to get unstable, too. It seems that the harder
you work, the more problems you have. Eventually your confidence is shot and every
rehearsal is sheer terror. You feel that everybody is looking at you and wondering what
is going on. You feel like a charlatan and doubt why you ever thought you were any
good in the first place. Perhaps you think that you have just been fooling yourself all of
this time.
You seek out the advice of teachers who offer the usual platitudes of, “Use more
air,” or, “Take some time off.” None of this is helpful and the downward spiral
continues.
Eventually you find your way to medical doctors and specialists trying to see if
they can offer you a solution. Ultimately, a neurologist informs you that you have a
movement disorder called focal dystonia, and your career is over because there is no
medical cure for this ailment. Or is there some hope?
The description above is all too real in the lives of a select number of musicians whose
professional lives are profoundly changed by focal dystonia. This study is designed to provide
first-hand information on this disorder by defining focal dystonia, what the most current medical
research is, how it relates to musicians, and to portray how three musicians have worked through
the realities of its effects.
3
Organization of Chapter 1
Chapter 1 is an overview of the study with an introduction to give the reader a sense of
what a sufferer of focal dystonia experiences when the condition first appears and progresses.
Purpose and need are described along with the research questions. Definitions of the highly
technical vocabulary are presented and a historical discussion of the disorder. A presentation of
triggering factors and commonalities is then followed by personal accounts by performing
musicians. The chapter concludes with a discussion of the importance of focal dystonia
knowledge for students and amateurs and a description of the organization of the dissertation.
Purpose
Using a careful review of the most recent literature as a base, this study is devoted to a
case study of two adult brass players who have worked to recover from this disorder. In doing
so, I intend to shed more light on this disorder. I will summarize commonalities and differences
in their circumstances through a series of intensive interviews with each player. Because I,
myself, have been struggling with effects of this movement disorder in my career, I will also use
my own engagement as an additional lens to shed a perspective on this interview data. The
intent is that this study might help others find hope for their own healing and help to create the
likelihood that a more open productive discussion will follow. It is hoped that qualitative
evidence from two case studies, and my personal reflection, will show that focal dystonia is now
better understood and more treatable then was once realized. Further, it is imagined that this
work might inform music educators and other professionals in a way that will allow them to be
helpful to others.
4
Need
Professional Musicians
The world of the performing musician is one of high pressure that comes from the
expected high standards they have to live up to and that they expect from themselves. The
pressure that musicians put themselves under can manifest itself in physical problems such as
focal dystonia (MacDonald, R., Kreutz, G., & Mitchell, L., 2012). Knowledge of the
contributing factors and potential rehabilitation strategies cannot only give players hope for
recovery, but also the information to prevent it from happening in the first place.
One of the difficulties in dealing with focal dystonia is the lack of knowledge within the
musical community, contributing to a stigma about the condition. At the time I became
subjected to embouchure dystonia (around 1999), there was little information on treatment, and
the general thought was that no cure or even potential for rehabilitation existed (Vining, 2014;
White, 2008). I did not share this information with anyone for fear of being told that my playing
career was over. In an article describing her battle with focal dystonia, Joanna Cowan White
(2007) addresses this issue.
Compounding the challenge of focal dystonia is the stigma surrounding it. Until
recently, there has been little information about focal dystonia prognosis, so
performers and teachers, understandably, keep quiet. When those who deal with
this confusing and devastating condition are without support, hopelessness sets in.
(p. 27)
White concludes:
In the meantime, sharing information and having empathy toward musicians who
deal with performance challenges can help us all. While musicians and
researchers work on the focal dystonia puzzle, we can each contribute by keeping
5
ourselves informed about musician’s wellness and by fostering a holistic and
healthy approach to the learning, performing, and teaching of music (p. 34).
Stahl and Frucht (2016) recently conducted a review of the state of research and
knowledge about focal dystonia. They concluded that some progress had been made in
understanding the etiology, pathophysiology, and risk factors; but clearly a need exists for more
research regarding the creation of more therapeutic options.
The Dystonia Medical Research Foundation (DMFR) has stated on its website that part of
its mission is, “to advance research for more treatments and ultimately a cure,” and, “to promote
awareness and education.” (Dystonia Medical Research Foundation: Mission & History, n.d.)
Musicians With Dystonia, a program within the DMRF, specifically states a goal, “to fund
research, to spread awareness and education, and to provide medical referrals and practical
assistance to affected musicians.” (Dystonia Medical Research Foundation: Musicians With
Dystonia, n.d.)
Music Students and Amateur Musicians
While most cases of focal dystonia that have been published are about professional
musicians, it is important to note that the disorder affects amateurs and students, too. Wristen
(2014) cited several studies addressing injuries among younger players, both in college and
before. One study showed that 80% of entering freshman at Northwestern University in 2007
experienced pain from playing their instruments. Another study found 49% of students in a
youth orchestra experienced music-related injury.
In light of these findings, the National Association of Schools of Music is adopting
standards requiring schools to provide information to students and faculty about health and
wellness for musicians. The current NASM handbook requires degree-granting institutions to
provide the following for their students:
6
Students enrolled in music unit programs and faculty and staff with employment status in
the music unit must be provided basic information about the maintenance of health and safety
within the contexts of practice, performance, teaching, and listening. For music majors and
music faculty and staff, general topics include, but are not limited to, basic information regarding
the maintenance of hearing, vocal, and musculoskeletal health and injury prevention. (NASM
Handbook, 2017-2018, p. 67).
It is apparent that more research into the causes and potential therapies is necessary in the
field of musician’s dystonia. This project is intended to add important information to the current
knowledge base on this disorder. The musical community needs to become more acquainted
with the current research on focal dystonia to help demystify the condition, create an open
dialogue, and empower all musicians to find the help they are seeking.
Research Questions
The following questions will guide the research, both in the review of literature and how
the three case studies both support and potentially stand at odds with the current scientific
findings. Furthermore, the stories of the case study subjects will provide insight into further
research for potentially successful therapies.
1. What levels of success have focal dystonia patients experienced with current
available treatments?
2. What are the current medical theories regarding focal dystonia and how do they
inform the treatment and rehabilitation process?
3. How have two specific cases from the world of brass music performance dealt with
recovery from embouchure dystonia?
4. How does my personal experience with focal dystonia add meaning to the
discussion?
7
5. In what ways do the three case studies relate to the current research?
Definitions
There is a substantial amount of medical terminology used in the review of literature and
throughout this dissertation. To help the reader have a better understanding, definitions of the
terms follow. Terms considered common knowledge have not been cited.
Adrenaline: a stress hormone produced in the adrenal glands that increase the heart rate
and strength of contraction. Part of the “fight-or-flight” response. Also known as
epinephrine.
Antagonist Muscles: muscles that work in opposition to each other.
Anticholinergic drugs: drugs that block the neurotransmitter acetylcholine, which is
involved in transmitting signals that affect muscle contraction, learning, and
memory.
Autonomic Nervous System: part of the nervous system that controls involuntary
functions such as heart rate, digestion, and respiration.
Basal Ganglia: a snail-shaped set of nuclei that are located deep in the center of the
brain. It regulates the initiation and coordination of motor activity.
Basolateral Amygdala: a combination of nuclei in the brain that is conditioned to
perceive fear to help protect the organism from injury.
Blepharospasm: dystonia of the eyelids that causes involuntary tight closure.
Cerebellum: located at the lower real part of the brain, it is part of the brain that
coordinates input from the sensory cortex and motor response. It is very
important in balance and voluntary muscle movement.
Cerebrum: the largest and most forward part of the brain. It is divided into four lobes
and is responsible for movement and higher thought processes.
8
Cortical Shock: when a stressful or traumatic situation initiates a response in the
autonomic and central nervous system, disconnecting some neural pathways and
over-exciting others (Farias, 2016).
Dystonia: “Dystonia is characterized by persistent or intermittent muscle contractions
causing abnormal, often repetitive, movements, postures, or both. The movements
are usually patterned and twisting, and may resemble a tremor. Dystonia is often
initiated or worsened by voluntary movements, and symptoms may “overflow”
into adjacent muscles.” (“What is dystonia?”, n.d.)
Electroencephalography (EEG): a test that detects electrical activity in the brain using
small metal discs attached to the scalp.
Embouchure Dystonia: dystonia of the muscles of the lips, face, or jaw that affect the
ability of a wind instrument player to play their instrument. Also referred to as
Task Specific Embouchure Dystonia. The dystonia is typically not present when
the person is not playing their instrument.
Etiology: the study of causation or origination of a disease or condition.
Jaw/Masticatory Dystonia: dystonia of the jaw muscles.
Laryngeal Dystonia: dystonia of the larynx.
Levator Labii Superioris: the facial muscles that raise the upper lip.
Lingual Dystonia: dystonia of the tongue.
Magnetic Resonance Imaging (MRI): a device that uses a magnetic field and radio
waves to create pictures of internal organs.
Maladaptive Plasticity: when the brain reorganizes its neural connections in a way that
creates negative or unwanted outcomes.
Masseter: the muscle responsible for closing the jaw.
9
Mirror movements: involuntary movements of homologous muscles during voluntary
movements of contralateral body regions.
Motor Cortex: the part of the cerebrum where voluntary motor function is planned and
executed.
Motor Overflow: an unintentional muscle contraction accompanying, but
anatomically distinct from, the primary dystonic movement.
Musician’s Dystonia: Hand dystonia and embouchure dystonia (which affects the
mouth, cheeks, jaw, and tongue) are the types of dystonia most often diagnosed in
musicians. Playing the instrument triggers the muscle spasms. The spasms are not
usually present at rest. (“Musician’s Dystonias”, n.d.)
Neuroplasticity: the brain’s ability to rewire itself to form new neural pathways
throughout life. It allows for the brain to adapt to changes in environment or
injury.
Norepinephrine: a neurotransmitter that increases the force of a contracting muscle and
is crucial to the human “fight-or-flight” response.
Nosology: the classification of diseases.
Proprioception: the ability of the brain to sense its own body parts, what position they
are in, and how much force is being used to move them.
Orbicularis Oris: the muscle ring surrounding the mouth that controls the mouth and
lips.
Oromandibular Dystonia: a focal dystonia characterized by forceful contractions of the
face, jaw, and/or tongue causing difficulty in opening and closing the mouth and
often affecting chewing and speech. If it occurs while playing a wind instrument,
it is often included under the larger group of embouchure dystonias.
10
Somatosensory Cortex: the part of the brain that receives sensory information from the
body.
Somatosensory Homonculous: a physical representation of the somatosensory cortex
based on the amount of the cortex dedicated to each part of the body.
Sensorimotor Cortex: collective term for the sensory and motor cortices.
Sensory Trick (Geste Antagoniste): touching the dystonic muscle to provide relief of
the dystonic symptoms.
Spatial Sensorimotor Constraints: in string players, those who play violin and viola
are more susceptible to dystonia in the left hand than cellists or bassists. This is
because the smaller instruments require higher spatial precision (Altenmüller &
Jabusch, 2010, p. 7).
Temporal Sensorimotor Constraints: in dystonic musicians where only one hand is
affected, the type of instrument largely determined the affected hand. Bowed
instrument players mostly suffer dystonia in the left hand, whereas guitar and
keyboard players suffer it mostly in the right hand. This is relative to the
workload and amount of fine motor control required in the affected hand
(Altenmüller & Jabusch, 2010, p. 7).
Thalamus: an area of the brain that processes sensory input and relays it to other parts
of the brain.
Torticollis: a dystonic twisting of the neck creating an abnormal head position.
Writer’s Cramp: focal dystonia of the fingers, hand, or forearm. It causes stiffness or
even uncontrollable curling of the fingers.
11
Background for This Study
History of the Identification of Dystonia
Evidence of the disorder that is now called “dystonia” dates as far back as the days of
Hippocrates (460-375 BCE) and Pliny the Elder (23–79 CE) that described rigor cervicis, a stiff
and painful neck, along with suggestions for softening up the neck muscles (Newby, Thorpe, &
Alty, 2017). Sixteenth-century Swiss physician, Felix Platerus, wrote what is considered the
earliest medical records of cervical dystonia, describing the disorder as, “a kind of spasm in
which the head was turned to the left side” (Newby 2017).
Considered the “Father of Neurology,” Jean-Martin Charcot (1825-1893) first separated
neurological disorders into two categories: organic and functional (Kumar, Aslinia, & Mazza,
2011). Organic disorders were those that could be attributed to changes in the structure of the
nervous system, and the functional disorders could not be matched to any sort of change (Newby
et al., 2017).
The term “dystonia” was first introduced in 1911 by German neurologist Hermann
Oppenheim who believed it was an organic disorder (Newby et al., 2017). Initially, there was
much debate about it being strictly a psychological or neurological issue. Until the 1970’s most
patients were referred to a psychiatrist, as it was believed that dystonia was the “expression of an
unhappy mind” (Marsden & Quinn, 1990). With the establishment of the Dystonia Medical
Research Foundation, more scientific research has been done to help understand the wide
spectrum of dystonias.
Samuel and Frances Belzberg, in response to their daughter being diagnosed with
dystonia, created the Dystonia Medical Research Foundation in 1976 in Vancouver, British
Colombia. The DMRF defines dystonia as follows.
Dystonia is characterized by persistent or intermittent muscle contractions causing
12
abnormal, often repetitive, movements, postures, or both. The movements are
usually patterned and twisting, and may resemble a tremor. Dystonia is often
initiated or worsened by voluntary movements, and symptoms may “overflow”
into adjacent muscles. (Dystonia Medical Research Foundation, n.d.).
Their very extensive website is a comprehensive encyclopedia containing the latest research,
therapies, and support systems.
Dystonia researchers Marsden and Quinn (1990) published a substantial article in the
British Medical Journal to discuss the many forms of dystonia and its potential causes. In this
extensive report, the authors gave a brief historical background sketch concerning dystonia and
explained the basic types of dystonias that affect the entire population. Symptoms and the
periods of onset for different types of dystonias are explained along with developing brain
research on the disorder. The authors stressed that dystonia is a neurological disorder and not a
psychopathological one, as was previously believed.
Curiously, faculty members of the Department of Clinical Chemistry in Edinburgh, and
the Department of Psychological Medicine at King’s College Hospital, London, published a
response to the Marsden and Quinn article in the British Medical Journal in 1990. The authors
argued that Marsden and Quinn only dealt with the organic etiology of dystonia and noted that
psychological factors were also an important aspect in its development (Whitby, Phelan, &
Prince, 1990).
The National Institutes of Health (NIH) now classify dystonia into three distinct types:
genetic, acquired, and idiopathic (“Dystonias Fact Sheet,” n.d.). According to the NIH, genetic
dystonias are those that are the result of heredity and have been found on a specific gene.
Acquired dystonias, sometimes considered as “secondary dystonias,” are those that are the result
of damage to the brain. Dystonias that do not have a clear cause are called idiopathic. Focal
13
dystonia falls into this category (“Dystonias Fact Sheet,” n.d.)).
The medical community considers Dystonia a movement disorder, along with
Parkinson’s disease and Huntington’s Disease (“Neurology - Movement Disorders,” n.d.). But
there is still a schism between those who believe it is neurologically based and those who look to
psychological origins (Newby, Thorpe, Kempster, & Alty, 2017).
Diagnosis
Albanese, Di Giovanni, and Lalli (2019) stated that there are five recognizable symptoms
of dystonia. The two primary symptoms are dystonic postures and movements, and a secondary
set of symptoms consisting of sensory tricks, mirror dystonia, and overflow dystonia. However,
there is no There is no general consensus in the medical community of diagnostic criteria for
different dystonia syndromes such as focal dystonia (Albanese et al., 2019).
There are many medical centers in the United States that have movement disorder clinics
that diagnose dystonia: John's Hopkins University Medical Center, The Mayo Clinic, and Mount
Sinai Hospital in New York are but a few.
John’s Hopkins Medical Center diagnoses dystonia with a clinical evaluation by an
expert in movement disorders. Blood tests and brain scans may be used as part of the diagnostic
process, but it depends on the type of dystonia that the patient is displaying (Johns Hopkins
Medicine, n.d.). Once a diagnosis is made, the best treatment protocol can be prescribed. Mount
Sinai Hospital engages not only neurologists to treat dystonia, but also physical and occupational
therapists, speech therapists, psychiatrists and psychologists (Johns Hopkins Medicine, n.d.).
Focal Dystonia in Musicians
In the instrumental music performance world, the importance of fine motor skills is well
understood. Any health condition that affects such skills is of major concern. “Dystonia” is
defined as a class of movement disorders in which muscles contract and spasm uncontrollably
14
(Iltis 2011). Dystonias specific to musicians belong to a class of movement disorders referred to
as focal dystonias, which are defined as, “a muscular incoordination or loss of voluntary motor
control of extensively trained movements” (Zosso & Schoeb, 2012, p. 53).
Development of this form of dystonia can cause tremendous psychological distress and
end careers. General dystonias, ones that affect any part of the body, occur in roughly .02% of
the population. In the world of musicians, focal dystonias affecting the very delicate movements
of small muscles or muscle groups that only occur while playing an instrument, or singing, are
known as task specific dystonias. Collectively, they are also referred to as musicians’ dystonias.
These movement disorders occur in approximately 1-2% of professional musicians (Altenmüller
& Jabusch, 2010).
For brass players, the most common form of musician’s dystonia is embouchure dystonia
Symptoms of this form of dystonia are uncontrolled tremors of the facial or jaw muscles. For
many years, brass players have had few resources to help them overcome embouchure dystonia.
Thankfully, this situation is changing. More is known today about embouchure dystonia than
ever before and effective treatment is more likely.
Musician’s dystonia as a broad topic has gained more attention in recent years. Research
done by Altenmüller (2013, 2010) has attempted to find the neurological causes of the disorder.
And practitioners such as Jan Kagarice and David Vining have helped to shed more light on the
topic for brass players (Fletcher, 2008). In the past, musicians were simply expected to deal with
injuries by simply “working through it,” or in more extreme circumstances to take some time off
for the body to heal (Vining, 2014). There are stigmas attached to the condition that prevent
many people from discussing it (Woo, 2011; Zosso, & Schoeb, 2012). And the vast majority of
teachers and students know little, if any, about the disorder (Bowman, 2017). During
undergraduate and masters studies in music performance at colleges, universities, and
15
conservatories, it is rare that these issues are addressed at all by teachers.
Personal Perspective
I personally have and continue to suffer from focal dystonia. The details of my personal
battle with this disorder will be presented in Chapter 6. When I began my doctoral studies, it
occurred to me in the very first days that I should use this opportunity to collect data on a topic
that is very personal me. From my own experience, and that of others, this medical problem for
musicians is a highly emotionally charged topic. The case studies that I will present display the
reality that focal dystonia can derail a player’s career very quickly and create severe
psychological consequences. Those who suffer often have to completely abandon that which
they worked so diligently to attain. They not only have to cope with the loss of something so
personal as the ability to play their instrument, but also must find a new way to support
themselves and their families.
Triggering Factors and Commonalities
Altenmüller and Jabusch (2010) conducted a large study seeking reasons that musicians
develop focal dystonia. This work resulted in the discovery of intrinsic and extrinsic triggers.
Intrinsic factors were defined as mechanical inhibition deficits, local pain from injury or overuse,
anxiety, and perfectionism. Extrinsic factors were categorized as temporal and spatial
sensorimotor constraints. The type of music played, jazz or classical crossed into both
categories. They found that classical musicians were much more likely to develop focal dystonia
than jazz musicians because of the expectation that classical musicians need to perfectly
reproduce the music on the page as opposed to the freedom that jazz music allows the player.
They also discovered that there was a genetic component since a majority of those who
developed focal dystonia (64%) had a family history of dystonia.
16
Fletcher (2008) has validated the findings of Altenmüller and Jabusch. Fletcher
maintained also that there might be commonalities among those who develop musician’s
dystonia. Typically they are highly talented musicians who play very naturally without over-
intellectualizing the process. They usually have become successful players of their instruments
and are described as having perfectionist tendencies, high levels of commitment to improving,
and very musically intuitive and expressive capabilities.
When dystonia first appears in a musician, the individual is likely to describe it in
musical terms, such as scales becoming uneven or a loss of control in the playing of their
instrument. Citing a presentation by low brass pedagogue, Jan Kagarice, Fletcher explained that
the typical first event in the development of dystonia in a brass player is a sudden change in the
sensation of playing the instrument (Fletcher, 2008). Fletcher indicated that the trigger could
come from many places: a new job, change in technique, injury, change in equipment, and stress
from any number of factors. The player then begins to focus exclusively on the symptoms and
increases the amount of practice time dedicated solely to fix the problem. This only serves to
exacerbate the problem, and anxiety and stress build to higher and higher levels.
The symptoms become the complete focus of the player's attention and the
practice regimen is increased. Unfortunately, despite the player's best efforts, the
problem worsens while fear, anxiety and stress continue to build. At this stage, the
player is either afraid others will notice the problem (or the problem has already
been noticed) and embarrassment and self-consciousness become constant. The
next result is generally the onset of depression as the problem continues to worsen
until it reaches a clinical state. Often the dystonia progresses, until playing is
virtually impossible (Fletcher, 2008, pp. 33-34)
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Personal Accounts by Performing Musicians
Marie Luise Neunecker. A professional hornist and professor of horn in Germany,
Marie-Luise Neunecker has developed a very specific view about the development of
oromandibular dystonia in brass musicians based on students that she has seen and her own
experiences. She believes that it starts with an upper lip injury, usually through overuse, that
causes the lip to become stiff. The result of this stiffness is a loss of response in the middle and
lower registers. The lips begin to cramp and have larger response problems (Neunecker, 2017).
Neunecker’s belief is that one needs to avoid focal dystonia by recognizing the symptoms
early on so that they may be counter-acted. The following symptoms are cited as early signs of
potential dystonia as listed by Neunecker:
• endurance diminishes
• there is more pressure on the upper lip
• the mouthpiece moves up
• the jaw musculature weakens
• middle and low ranges speak with difficulty and do not sound good
• the low range is difficult to play loudly
• the throat/neck/ arm region tense
• tonguing becomes more difficult
• there is a strong negative observation of one's playing
• lack of mental relaxation
(Neunecker, 2017, pp. 5-6)
To counter these response problems, players may begin using more mouthpiece pressure,
causing more damage to the lip. Neunecker suggested this increased pressure causes throat
muscles to tighten along with other parts of the body, particularly the left arm, which supports
18
the instrument. The tension of all these muscle groups causes the body to no longer perceive the
support muscles. The player then ceases to use those muscles, causing them to use even more
mouthpiece pressure for security. This snowball effect can eventually lead to embouchure or
oromandibular dystonia (Neunecker, 2017).
Joanna Cowan White. Flutist, Joanna Cowan White, shared her experiences with focal
dystonia of the facial muscles (White, 2017). Her case began to manifest itself after working on
an orchestral work with exceptionally high, strongly articulated notes. She believes that caused
an injury that created tremors and an inability to focus her lips. The condition went away, but six
years later returned when she worked on another piece that was exceptionally strenuous on the
lips. Her account of the onset of focal dystonia is particularly poignant.
I learned a beatbox piece, and two weeks later, the tremors were back. Beatboxing
does not cause focal dystonia. But it is strenuous on the lips, I’d suffered a
previous lip injury, I practiced this new technique vigorously for many days, and I
was under stress from other medical challenges. I believe all these factors
conspired in the return of the tremors.
This time, the tremors did not go away. The next month I performed at the NFA convention in
Las Vegas. I was so worried about lip tremors that my fingers started shaking as well. When I
blew into the flute later that day, even in the practice room, my lips and fingers quivered.
Actually, my fingers shook any time I held them over the flute keys” (White, 2017, p. 27).
Michael Mulcahy. During an interview regarding a newly commissioned concerto for
trombone and orchestra (Rosenthal, 2017), Michael Mulcahy, second trombonist of the Chicago
Symphony, discussed his preparations for playing solos with the orchestra. He expressed his
concern about players over-practicing and stated that he is seeing many more cases of focal
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dystonia than before. He feels that it usually begins with an injury borne from obsessive over-
practicing and that musicians must temper their practice time or more injuries will occur.
Peter Iltis. A personal history of musician’s dystonia is discussed by Peter Iltis (2002), a
professional hornist who developed focal dystonia after what he describes as, “Blasting his way,”
to a good horn sound in the lower register.
I had been dissatisfied with my playing in the low range of the instrument…I
decided to correct this and become a more flexible performer by spending many
hours practicing scales and arpeggios at extreme dynamics in the middle and
lower registers (p. 14).
At first he began to see small tremors in his lips and some of the things that had been easy for
him had gradually become more difficult. His response was simply to work harder at it, as most
musicians are instructed to do, which only made the problems worse. The result was that he had
to give up playing the horn, leading him to research his disorder. His research into focal dystonia
led him to believe that excessive practicing and perfectionist tendencies are key factors in its
development in musicians.
Joachin Farias. Dr. Joachin Farias, a musician turned neurologist who recovered from
hand dystonia, has helped a number of musicians and non-musicians recover from varying
manifestations of dystonia. In his book, Limitless: How Your Movements can Heal Your Brain
(Farias, 2016), he cited the same study on monkeys noted by Iltis but concluded different. Dr.
Farias believed that the mental state of the monkeys was a larger factor in their development of
dystonic symptoms than the repetitive nature of the tasks. He postulated that forcing the
monkeys to engage in repetitive tasks placed them in a stressful, unnatural situation. By creating
fear, hunger, pain, isolation, and an entire host of emotions in the monkeys made them adhere to
20
a rigid protocol. The stage was set for the development of dystonia. Citing the experiences of
dystonia patients that he has treated, Farias believed that repetitions performed while
experiencing extreme negative emotions is more likely to be the cause of the dystonia rather than
just the repetitions themselves.
Alex Klein. Alex Klein successfully re-auditioned for the position of principal oboe in
the Chicago Symphony Orchestra 12 years after resigning the same position in 2004 due to focal
dystonia of the third and fourth fingers of his left hand. Klein believes that his condition began
not from a particular injury, but from a sensory problem within the brain that misinterpreted the
location of those fingers (Klein, 2017). This concept of the somatosensory cortex having a
different ‘picture’ of what the body is actually doing is supported by the current research. Klein
reasoned that other muscles on the left side of his body grew more and more tense in an effort to
compensate for the conflicting messages from his brain. Ultimately, these two fingers curled
tightly into his palm and forced him to stop playing the oboe (Klein, 2017).
David Vining. Trombonist, David Vining, wrote about his experience with focal dystonia
(TSED) in his collection of letters from musicians who have dealt with dystonia and injuries
(Vining, 2014). This book contains the personal stories of twelve different professional
musicians in their own words. In describing his own story, and his discussions with others,
Vining concludes that dystonic musicians are usually ‘natural’ players with perfectionist
tendencies.
Organization of Remaining Chapters
Chapter 2 contains a focused review of the current literature on focal dystonia in
musicians with particular attention to brass players. Both the neurology and the physiology of
the disorder are examined as well as the current state of therapy and rehabilitation, and
instrumental pedagogy.
21
Chapter 3 will outline the methodology of the case studies that will follow. Along with a
discussion of the development of the methodology from the relevant literature, it will address the
selection of participants, how IRB was handled, creation of the interview questions, how the
interviews were conducted, and the creation and evolution of the codes that were used.
Chapters 4 and 5 are the case studies of the two outside participants that were drawn from
the interviews that were conducted. Each chapter will give an introduction of the participant
followed by a narrative of each person’s precipitating factors that led to focal dystonia. An
analysis of the manifestation, based on the coding that was developed, follows. The second half
of the chapter examines the recovery factors, again followed by an analysis of recovery factors
using the created codes.
Chapter 6 addresses my personal experience with focal dystonia. I recount how the
disorder manifested itself and my attempts at rehabilitation. This chapter follows a similar
format to the other case studies. A narrative of the precipitating factors and recovery factors is
presented; each followed by the coded analysis.
Chapter 7 presents a synthesis of the findings, using the coding to find commonalities and
differences in each person’s experience. A summary and implications for practice concludes the
chapter.
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Chapter 2 – Review of Literature
Introduction
This chapter contains a review of the literature, which provided the basis for this study. It
is organized from a more general discussion regarding the condition of focal dystonia to a more
focused review of the specifics of musician’s dystonia. The chapter begins with the current
research on the basic neurological factors of focal dystonia. A review of the etiology of focal
dystonia follows. Within the etiology section, psychological, sensory, injury, overuse, and
genetic factors are reviewed. Because there are causes of tremors other than focal dystonia, non-
dystonic tremors are also addressed. A review of research regarding the most recent treatment
and rehabilitation including medical, behavioral, and pedagogical interventions follows.
Similarly to the organization of the chapter, the literature was first searched to find
general information on focal dystonia. Both medical and music journals were searched. I was
particularly interested in research that had been done in the last five years. Ultimately, I had to
expand that range to ten years to collect enough relevant literature. I then sought literature that
was more specific to focal dystonia in musicians, both causes and potential rehabilitation
strategies.
Neurology of Focal Dystonia
The neurology of dystonia is the subject of a number of published articles in recent years.
The information presented here will give the reader a clearer idea of the neurological blueprint
for dystonia, including focal. Medical professionals researching the disorder have found what
they believe to be evidence of problem irregularities in the central nervous system present in
dystonic patients. Two particular places in the brain are of great interest to researchers, the
sensorimotor cortex and the basal ganglia. Altenmüller and Jabusch (2016) took a very broad
look at dystonias affecting musicians. From a neurological standpoint, the authors suggested
23
three pathophysiological findings: (1) maladaptive plasticity in the somatosensory cortex creates
reduced inhibition at different levels of the central nervous system, (2) altered sensory
perception, and (3) alterations in sensorimotor integration (p.6).
The sensorimotor cortex is located in the central part of the cerebrum and consists of the
sensory and the motor cortices. In essence, it is a thin slice that runs across both hemispheres of
the brain as shown in Figure 1. The sensory cortex receives input from the body, and then sends
impulses to the motor cortex, which coordinates a movement in response to the sensory input.
Neurologists have determined that there is a specific location near the surface of the cortex that
correlates to each part of the body. Figure 2 shows this correlation represented by the
Somatosensory Homonculous.
Figure 1. Cerebral Cortex – Functional Areas, by Lauren Keswick, 2017.
https://medicalartlibrary.com/cerebral-cortex/. 2017 Medical Art Library. Used with permission.
24
Figure 2. Sensory Homonculous. McGill University, June 29, 2010. Retrieved from
http://www.amareway.org/holisticliving/06/sensory-homunculus-cortical-homunculus-motor-
homunculus/ Copyright McGill University, 2010.
As seen in figure 2, a specific area of the cortex is assigned to each finger. In musicians
that have been diagnosed with focal hand dystonia, these areas begin to overlap creating altered
sensory perception. Figure 3 shows an MRI scan of the brain using evoked potential technology
that demonstrates the overlap of sensory inputs in the fingers in a patient suffering from dystonia
of the hand.
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Figure 3. MRI of the brain showing overlap of sensory inputs. Altenmüller (2010)
(Modified from Elbert et al.16 and Münte et al: Nat Rev Neurosci 2002; 3:473-478. Retrieved
from http://search.proquest.com.libproxy2.usc.edu/docview/753580167?accountid=14749.
Copyright Altenmüller (2010). Used with permission.
On the left side of the scan is showed the representation of sensory input of the non-
dystonic digits labeled D1-D5. The right side of the scan displays the locations of sensory input
of the dystonic hand. Here one can see the overlap of digits D3-D5, demonstrating that the
sensory cortex is having difficulty differentiating those digits on that hand. Magnetic Resonance
Imaging (MRI) and Electro Encephalography (EEG) have suggested that overlap of receptive
fields in patients suffering from dystonia causes coordination problems and firing of antagonist
muscles, resulting in dystonic tremors.
Until recently, the only MRI mapping of the sensorimotor cortex has been done on those
who are suffering from focal hand dystonia and has excluded embouchure dystonia patients. The
reason may be related to technical considerations regarding the scanner; you cannot bring any
26
piece of metal into an MRI machine, so it would be impossible to map the brain of a brass player
while they are playing the instrument. But a new project, taking place at the Max Planck
Institute for Biochemistry in Germany and at Boston University, will hopefully be able to rectify
this situation (Iltis, Schoonderwalt, Zhang, Frahm, & Altenmüller, 2015)
The MRI Brass Repository Project (Iltis et al., 2015) has developed new techniques to
create a repository of real-time MRI videos of dystonic players as well as elite brass musicians.
By using a plastic mouthpiece and tubing to simulate a brass instrument, they have been able to
make scans while the subjects play different notes. Their goal was to start a longitudinal trial
intervention with real-time MRI feedback to help in the retraining of dystonic brass players (The
MRI Brass Repository Project).
The MRI Brass Repository Project’s current research could provide some new
breakthroughs in understanding focal dystonia. The research team found that the dystonic
players were creating odd tongue formations inside of the mouth, along with extraneous lip pull.
After giving the patients a number of tongue exercises from simple, to more complex, it was
determined that they had normal control of the tongue away from the instrument. But once
layers of complexity were added with the addition of playing the instrument, the control became
worse. The intent is to create intervention by using visual feedback to create a kinesthetic link
between what the player is feeling and what they are actually seeing in the MRI recordings. It is
akin to having a player look in a mirror while playing so as to see what is really happening,
versus what they think is happening.
While the evidence for overlapping of the somatosensory locations causing musicians’
dystonia is compelling, there are also theories about the contribution of the basal ganglia in
dystonic movements. The basal ganglia is a collection of small structures (caudate, lentiform,
subthamalic nuclei, claustrum, substantia nigra, and dopaminergenic neurons) that together form
27
a snail shaped configuration directly in the center of the brain that connects to the sensory and
motor cortices (Brown & Marsden, 1998). The exact function of the basal ganglia is not known,
but it is believed to, “provide the automatic link between voluntary effort, sensory input, and the
calling up and operation of a sequence of motor programmes or thoughts” (Brown & Marsden,
1998, p. 1801).
The illustration in Figure 4 shows an abnormal feedback loop present in dystonic
musicians proposed by Konczak and Abbruzzese (2013).
Figure 4. Proposed abnormal feedback loop. Konczak and Abbruzzese (2013). Retrieved
from http://dx.doi.org.libproxy2.usc.edu/10.1016/j.neunet.2013.06.012. Copyright Medical
Problems of Performing Artists, 2013. Used with permission
In this proposed feedback loop theory, the ‘smeared’ representation of digits 1, 2, and 3
in the somatosensory cortex give imprecise directions to the motor cortex. The basal ganglia
initiates movement of the digits with input from the cerebellum and thalamus. Involuntary
movements of the digits occur feeding movement information back to the already mistuned
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somatosensory cortex and cerebellum (Konczak & Abbruzzese, 2013).
Sensing that incorrect movements are occurring, the basal ganglia initiates antagonist
muscle movements to subdue the undesired muscle contractions. The result is a constant
feedback loop that creates involuntary muscle contractions (Konczak & Abbruzzese, 2013).
Konczak and Abbruzzese support this hypothesis by citing that dystonic symptoms can be
temporarily alleviated by using sensory tricks, such as a guitarist wearing a thin glove on the
dystonic hand, or by tactile stimulation of a dystonic musculature (p. xxx). These sensory tricks
alter the prioperceptive feedback in the sensorimotor loop, therefore interrupting the loop and
reducing dystonic movements.
Although much research in the field of neurology has focused on the role of basal ganglia
in focal dystonia, there has also been recent focus on the role of the cerebellum, which is
involved in sensorimotor integration helps to coordinate voluntary muscle movements.
According to Kaji, Bhatia, & Graybiel (2018) dystonia is now considered a network disorder
rather than being located in one specific area of the brain. Autopsies performed on patients who
developed dystonia later in life showed an atrophy of the cerebellum, but no abnormalities in the
basal ganglia (Kaji et al., 2018). The findings suggest that bad inputs from the cerebellum to the
basal ganglia may create dystonic symptoms.
Neurologists have used Transcranial Magnetic Stimulation (TMS) to examine the
connectivity between the Cerebellum and the Motor Cortex (Bologna, & Berardelli, 2017). TMS
involves altering the electrical activity of the brain by placement of a stimulating coil on the
surface of the skull. Placing this coil over a specific area affects brain tissue directly beneath.
TMS work on dystonic patients has found that the Cerebellum did not provide the necessary
inhibition in the motor cortex to prevent antagonist muscle activation. Furthermore, the
researchers posited that the cerebello-thalamo-cortical pathways, the connection between the
29
between the cerebellum, the thalamus, and sensorimotor cortex, appear to play a role in focal
dystonia, but not more generalized dystonia such as Cervical Dystonia (Bologna, & Berardelli,
2017).
Etiology
The specific causes of focal dystonia are, as yet, unclear. While research has shown
evidence of maladaptive plasticity in the brains of those showing the symptoms of focal
dystonia, the definitive reasons for these changes are still inconclusive. There are a number of
theories including genetics, injury, overuse and psychological factors.
Genetics
Waddy, Fletcher, Harding, & Marsden, (1991) studied 153 first-degree relatives of 40
focal dystonia patients. Of these patients, 14 had torticollis, 16 had focal dystonia of the
cranium, and 10 had writer’s cramp. In all, 25% of those 40 patients had relatives with focal
dystonia. Further analysis showed a strong possibility of an autosomal dominant gene or genes
that were common causes of the condition.
A similar conclusion of autosomal dominant genes being a factor in development of focal
dystonia was reached by Stojanović, Cvetković, & Kostić. They surveyed 43 patients that
suffered from torticollis (21), blepharospasm (18), and writer’s cramp (4). Their results showed
that 23% of the patients had family histories of focal dystonia (1995).
More recently, a study was done by Schmidt, Jabusch, Altenmüller, Hagenah,
Brüggemann, Lohmann, . . . Klein (2009) specifically focused on focal dystonia in musicians.
To test their hypothesis of a genetic etiology in musician’s dystonia, and to identify any possible
environmental factors, the researchers studied the families of 28 patients diagnosed with
musician’s dystonia. Of those patients, 14 of them had known family histories of focal dystonia,
and 14 reported no family history at the beginning of the study. In addition to the original
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patients, 97 people were tested for focal dystonia, and 19 were ultimately diagnosed with the
disorder. In the total of 28 families that were studied, 18 of the families were “multiplex”
families, having 2 to 4 members of the family affected. In addition, autosomal dominance
appeared in at least 12 of the families. They also found no significant environmental triggers
between those who had focal dystonia and those in the family that did not.
Curiously, men are four times more likely to develop focal dystonia than women
(Altenmüller, 2010; de Hass, 2009; Stahl & Frucht, 2017). The reasons for this are unknown,
but orthopedic surgeon Jaume Rosset-Llobet hypothesized that differences in hormones may be a
contributing factor. She designed a study that examined correlations between dystonia
symptoms and the menstrual cycle. The findings suggested that hormonal changes that lead to
menstrual differences affected the cortical excitation/inhibition balance and affected brain
plasticity in a way that makes the maladaptation of the sensorimotor cortex found in dystonia
sufferers less likely to occur in women (Rosset-Llobet, 2012). She concluded that much more
research would need to be done in this area.
Injury
Peripheral nerve or muscle damage may also play a factor in the development of focal
dystonia. Some painful conditions, such as carpal tunnel syndrome, are the result of physical
overuse and nerve entrapment. Injuries could create a situation where the musician compensates
with other muscles, eventually causing maladaptation in the sensorimotor cortex (Hallet, 1999).
Hallet reported a study in which 28 of 73 musicians with dystonia of the hand showed
neuropathy of the ulnar nerve which innervates the fourth and fifth digit of the hand which
provided both flexor movement and tactile sensation (1999). In the same study, 13 of 14 patients
whose ulnar nerve neuropathy improved showed a reduction in focal dystonia symptoms.
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Estrin (2012) reported that hornist and focal dystonia patient, Glen Estrin, was not
convinced that overuse or nerve compression were factors in the development of his dystonia.
Estrin felt that pain was usually associated with those conditions and that dystonia is a
neurological disorder originating from the brain and it was almost always completely painless.
Sakai (2011) studied 1,013 professional pianists experiencing hand pain due to overuse.
The maladies the pianists were experiencing were separated into six different types:
tenosynovitis or tendinitis (242 cases), enthesopathy (273), muscle pain (168), finger joint pain
(85), neurological disturbance (229), and others (52). Of the cases attributed to neurological
disturbance, focal dystonia accounted for 168 of those affected, which is 6% of the problems
reported.
Overuse
In the early 1990’s, a study by Byl, Merzenich, and Jenkins (1996) at the San Francisco
School of Medicine undertook the task of showing that overly repetitive movements could cause
maladaptive plasticity in the brain. In this study, owl monkeys were forced to squeeze and
release a pistol grip in less than three-quarters of a second to be automatically given small pieces
of food. The intent was to induce writer’s cramp in their hands. This training took place for one
to two hours per day and included up to 3,000 repetitions during that time.
After periods of three months for one of the monkeys and six months for another,
monkeys were unable to move their fingers individually. When the researchers electronically
body mapped the brains of the monkeys, they found that the animals had developed
abnormalities. The specific areas of the brain with sensory neurons for each finger had grown up
to twenty times its original size, blurring the sensory map for each finger. The monkey’s brains
had rewired themselves in a maladaptive way. Neurons that should have been activated when a
specific area of the body was touched would fire to tactile stimuli over a large area (Byl, et. al.,
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1996). They concluded that:
Rapid, repetitive, highly stereotypic movements applied in a learning context can
actively degrade cortical representations of sensory information guiding fine
motor hand movements. This cortical plasticity/learning-based dedifferentiation
of sensory feedback information from the hand contributes to the genesis of
occupationally derived repetitive strain injuries, including focal dystonia of the
hand. (p. 508)
Surveys of musicians who have developed focal dystonia also support the theory of
overuse being a factor (Sadnicka, Kassavetis, Pareés, Meppelink, Butler, & Edwards, 2016). In
pianists, the right hand is more likely to become dystonic while the left hand in those who play
bowed string instruments is more likely to develop dystonia. The commonality is that those are
the hands that bear a larger amount of the technical burden for those instruments.
Furthermore, in dystonic musicians where only one hand is affected, the type of
instrument largely determined the affected hand. Bowed instrument players mostly suffer
dystonia in the left hand, whereas guitar and keyboard players suffer it mostly in the right hand.
This is relative to the workload and amount of fine motor control required in the affected hand.
It becomes even more acute with instruments that require finer discrimination of movement such
as playing the violin versus the contrabass (Altenmüller & Jabusch, 2010).
Altenmüller and Ioannou (2016) suggested that motor fatigue in highly skilled people
such as musicians could create a situation where muscles that are not normally used for playing
the instrument are recruited and ultimately create dystonic movements. For example, in skilled
piano players, fatigue of the long flexor muscles in the forearm may be compensated by
activation of the intrinsic muscles in the hand, which in turn results in dysfunctional movements
in the metacarpophalangeal (MCP)-joints with lack of fine control of touch, and degraded sound
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quality. These changes are accompanied by central nervous adaptations due to short-term
plasticity, and they result in reduced amplitude of movement-related potentials and in an
alteration of the topography of motor and premotor cortex activations (Altenmüller & Ioannou,
2016).
Psychological Factors
Dystonia was originally believed to be a psychological issue rather than a neurological
one, although recent research has supported the idea that maladaptation of the sensorimotor
cortex, cerebellum and basal ganglia are to blame. But there is some evidence that psychological
factors may play a role in the development of focal dystonia. Conte, Berardelli, Ferrazzano,
Pasquini, Berardelli, and Fabbrini (2015) found that psychiatric disorders were common in focal
dystonia patients. They determined that psychiatric disorders often precede the motor
manifestations of focal dystonia. Levels of depression did not mirror the severity of the
dystonia, which led them to believe that the depression, in most cases, was not the result of
dystonia.
One questionnaire study (Altenmüller, 2004) focused on different types of anxiety as
factors. Results indicated that dystonic musicians had substantially higher occurrences of social
phobias and other specific phobias. Depression and Obsessive-Compulsive
Disorder/Perfectionism were also discussed as contributing factors. All of these conditions were
present before the onset of focal dystonia in the study group.
Although published before the study by Konczak and Abbruzzese (2013), Altenmüller
(2004) noted a similar feedback loop theory. The effects of anxiety and perfectionism were also
factored into the mix. In this theoretical model, perfectionism and anxiety created threatening
experience in the performer. Any dystonic movement perceived by the somatosensory cortex
creates an even higher degree of anxiety, putting the performer into “fight or flight” stage,
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resulting in releases of epinephrine and adrenaline. Epinephrine release causes the Basolateral
Amygdala, the part of the brain that learns fear as a means of protecting the organism, to release
norepinephrine, sending a false signal to the primary motor cortex. The motor cortex misfires,
further heightening anxiety in the performer (Altenmüller, 2004). The result is a ‘snowball
effect’ illustrated in Figure 5 where the dystonic movements result in a higher fear response,
which releases more of the epinephrine and adrenaline, further exacerbating the dystonic
movements.
Figure 5. Dystonic feedback loop. Reproduced from Altenmuller and Jabusch, MPPA 2004,
adapted in part from McGaugh Science 2000 (McGaugh JL: Memory—a century of
consolidation. Science 2000; 287:248–251). Used with permission.
35
Musician and Doctor of Biomechanics, Joachin Farias, noted in a published article (2016)
that the dystonic brain develops corrupted pathways that keep the person from performing the
highly coordinated actions required for musicians. However, he is of the opinion that
psychological trauma, either caused by physical trauma or a traumatic personal event is the
trigger that causes maladaptive plasticity within the brain. He has been working with patients
suffering from many different types of dystonia, not just musicians, and has come to the
conclusion that dystonia is the, “symptom of a hypersensitive response of the nervous system”
(Farias, 2016, p. 204).
Further, Farias’s theory is that a traumatic event causes a condition known as cortical
shock. Cortical Shock occurs when a stressful or traumatic situation initiates a response in the
autonomic and central nervous system, disconnecting some neural pathways and over-exciting
others. The result of is miscommunication between the different sections of the brain: sensory,
motor, perception, cognition, and emotion. This communication problem inhibits coordinated
movement, which displays itself in dystonic movements.
Farias cited the same study done on Owl Monkeys by Byl and colleagues, but his
conclusion was different. He believed that a major factor in the maladaptive plasticity shown in
the brains of the monkeys was the mental trauma that they were subjected to during the trials.
To get the monkeys to keep squeezing the trigger to get food, they had to be put in a traumatic
mental state of extreme hunger and fear. When they did receive food, it was such a small
amount that they immediately squeezed the trigger to get more to satisfy their hunger. The
combination of repetitions and being subjected to extreme conditions ultimately caused their
problems (Farias, 2016).
36
Combining Sensory and Psychological Factors
Altenmüller and Ioannou created a very elegant diagram of the sensory and psychological
factors that they believe contribute to the development of focal dystonia in musicians shown in
Figure 6.
Figure 6. Sensory and psychological triggering factors. Altenmüller, E., & Ioannou, C. I.
(2016). Maladaptive plasticity induces degradation of fine motor skills in musicians. Zeitschrift
Für Psychologie/Journal of Psychology, 224(2), 80-9
doi:http://dx.doi.org.libproxy1.usc.edu/10.1027/2151-2604/a000242. Used with permission.
In this proposed model of psychological and sensory contributions to motor dysfunction,
the dotted area indicates the degree of importance which psychological factors are assumed. The
increasing gray to darker space shows the increase of loss in motor control (Altenmüller &
Ioannou, 2016).
37
Non-Dystonic Tremors
It is important to note that not all muscle tremors in musicians are the result of dystonia.
Parkinson’s Disease and Essential Tremor are other conditions that cause shaking and a loss of
control of the fine motor skills necessary for playing an instrument. Parkinson’s disease is a
degenerative disease of the brain. Early symptoms are muscle stiffness, slowness of movement,
and hand or arm tremors that occur when the limbs are at rest (NHS Inform, n.d.). Essential
tremor is neurological disorder that causes rhythmic shaking, most often in the hands (Mayo
Clinic, n.d.). The differences between essential tremor and focal dystonia are not always easy to
spot. Unlike focal dystonia, essential tremor is not limited to tremors that happen when trying to
perform a specific task (The Dystonia Society, n.d.). The Dystonia Society lists the following as
key differences between the two types of tremor:
• Essential tremor does not appear in combination with dystonia.
• Essential tremor has a regular oscillation while the movement in
dystonic tremor is usually irregular.
• In most cases of essential tremor the arms, hands or fingers are affected
symmetrically. In contrast, dystonic tremor can affect other parts of the body, such as
the head, without the hands or arms being affected (although dystonic tremor can also
sometimes affect the hands).
• Dystonic tremor can sometimes be temporarily relieved by a sensory trick but this is
not the case with essential tremor.
38
Rehabilitation
There are no definitive “cures” for musician’s dystonia at this time and a diagnosis of
dystonia is often considered the end of a musician’s career. Lederman (2007) undertook a
longitudinal study of 46 musicians with muscle tremors, which impaired their playing. Of those
46, 16 of them were diagnosed with dystonic tremors. The participants were followed over an
average of 3.5 years, with the longest observation lasting 19 years. Of those 16, only four
considered their playing to be unimpaired, and three others were still performing, but with some
amount of noticeable impairment. The other nine participants had ceased performing altogether.
As the musical and medical community has learned more about focal dystonia, a number of
different ways of treating the disorder, both medical and behavioral, have been tried with varying
levels of success.
Medical
One of the earliest pharmaceutical therapies that have been attempted is injection of the
affected muscles with Botulinum Toxin (Botox). The effect of Botox is to deaden the nerve
impulses that cause the muscle to contract. According to Batla, Stamelou, and Bhatia (2012),
Botox is the most popular therapeutic treatment for focal dystonia. It has been used successfully
in patients with general dystonia to reduce contractions and tremors, particularly those with
cervical dystonia of the neck and writer’s cramp.
In cases of focal hand dystonia, Botox injections have provided some relief of symptoms,
but positive results are dependent on the type of dystonic tremor and the ability to accurately
locate the proper muscles for injection. In one study, 71 musicians suffering from hand dystonia
were treated with botox. Fifty-seven of them reported improvement over a long period of time
(Altenmüller, & Ioannou, 2016).
39
For those who suffer oromandibular dystonia, treatment with Botox usually involves the
jaw muscles rather than the facial muscles. Batla et. al. (2012) reported that Botox injections
have provided some relief in these patients. Unfortunately, the negative effect of using Botox on
sufferers of musician’s dystonia is that it inhibits the fine muscle control that is necessary to
perform on an instrument at a high level and can even cause muscle atrophy (Lewis, 2017).
Trihexyphenidyl, an oral medication for treatment of Parkinson’s disease is also sometimes
prescribed. How this medication works is not exactly known, but there is conflicting evidence
about its effectiveness in treating focal dystonia. There has been some success treating focal
hand dystonia, particularly writer’s cramp. However, there is a fine line between efficacy and
adverse effects when using Trihexyphenidyl, or other anticholinergic drugs, which make its
value very limited (Lin, Shamim, & Hallett, 2006). Other oral medications such as tetrabenaze
and clonazepam have been tried, but have shown to be of little use to alleviate symptoms of focal
dystonia (Batla et al., 2012; Stahl & Frucht, 2017).
Non-Invasive Medical Procedures
Another potential therapy for focal dystonia involves non-invasive brain stimulation to
help reorganize the somatosensory cortex from its maladaptive state. Neurologists have been
experimenting with a safe and painless technique called Transcranial Magnetic Stimulation
(TMS) to do this. Repetitive TMS (rTMS) studies have shown that the motor and sensory
cortices both have a high capacity for plasticity. There is evidence that rTMS can modulate
excitability, sensory function, and motor control (Borich, Brodie, Gray, Ionta, & Boyd, 2015).
A study using rTMS to alleviate symptoms of ‘writer’s cramp’, involved 12 subjects who
were subjected to low frequency rTMS (1 Hz) for single sessions over the course of five days.
Measurements concluded that inhibition within the cortex was increased for the first three days
of treatment and the subjects’ symptoms had improved to varying extents, but failed to improve
40
over the final two days. Eight of the subjects reported some improvement during the treatment,
and seven reported that the improvement persisted for ten days or more after treatment had ended
(Kimberley, Borich, Arora, & Siebner, 2013). The authors of the study commented that while a
robust effect in alleviating the symptoms of their subjects was not achieved, the short-term
changes that were observed warranted further investigation for use of rTMS in the treatment of
dystonia.
Behavioral
Focal dystonia is a disorder of the brain, but one that is induced by experience. The
potentially good aspect of this fact is that the disorder may be able to be unlearned (Woo, 2011).
The concept of fixing the corrupt pathways that have been trained into the brain was earlier
studied by the same group led by Byl and colleagues (2003) that showed the maladaptive
plasticity induced in the brains of owl monkeys. The theory was simple. If repetitive,
simultaneous sensory input to the fingers causes focal hand dystonia then the logical treatment
would be to re-differentiate the cortical representations of those digits.
Byl and her colleagues had focal hand dystonia patients read Braille or play dominoes
blindfolded while being intensely focused on the task at hand. They were also encouraged to
visualize using their disabled hand to perform the tasks while not actually doing them. The
intent was to have them perform tasks that required high sensory discrimination, but were not
repetitive or simultaneous (2003). After taking part in Byl’s “sensorimotor retraining program,”
the patients reported an 85 to 98% improvement in their fine motor skills (Byl et al., 2003).
Although it was a small sample size of only three participants, two of them returned to
performing, demonstrating that maladaptive plasticity can be repaired in at least their cases.
Rehabilitation and retraining of musician’s dystonia of the hand has provided some
additional promising outcomes. Pianists, string players, and guitarists are the most susceptible to
41
this disorder. Constraint therapy, in the form of a splint, is applied either to the dystonic
finger(s), or to the neighboring digits, to immobilize the affected area. A study involving eight
subjects suffering form musician’s dystonia found that constraint therapy was effective in
reducing dystonic symptoms (Berque, McFadyen, Harkness, & Gray, 2013). The study involved
a twelve-month splinting protocol for musicians who played flute, oboe, bagpipes, guitar, and
accordion. In all cases, the dystonic movements were present in the fingers of the players.
Splints were applied not to the dystonic fingers, but to the neighboring digits to suppress co-
contraction while exercises were performed to retrain the affected digits. After the study period,
the musicians experienced a marked improvement in their symptoms, and longitudinally they
continued to maintain their recovery levels for years after the therapy and retraining. The
authors stated that symptoms did not show substantial improvement until six-eight months into
the study, suggesting that there is no ‘quick fix’ for focal dystonia. Therapy and retraining takes
time and commitment, but results seem promising.
Satoh, Narita, and Tomimoto (2011) conducted a case study of three different brass
players exhibiting three different types of oromandibular dystonia. One subject was a trumpeter
who had developed a tremor in the jaw (masticatory). This tremor affected the tone quality and
control of different registers of the instrument. Another subject was a hornist that experienced
weakness of the lower facial muscles (embouchure). The third subject was a trombonist who
suffered from involuntary contractions of the muscles around the mouth (embouchure) along
with difficulties in accurate tongue movement (lingual). In these case studies of three brass
players affected with embouchure dystonia, the researchers attempted different therapies. Both
the hornist and trombonist who were suffering with facial and lingual dystonias were treated with
various pharmaceutical interventions such as trihexyphenidyl, levodopa, clonazepam, valproate,
diazepam, and selective serotonin reuptake inhibitors along with sensory tricks such as biting on
42
a piece of cotton while playing, changing equipment, and cooling the muscles. None were
effective and both ceased their playing careers.
In the case of the trumpeter with masticatory dystonia, dental splints were made to help
keep the jaw from closing. After two months of using the splints, the jaw tremors began to
abate. By the sixth month of using the dental splints, the symptoms had completely disappeared
and the player was able to gradually stop using them. As of the time of publication of the study,
two years after cessation of the symptoms, the player was still symptom free.
Ultimately, the best way to remedy focal dystonia may be to take preventative measures
to keep it from occurring in the first place. A case study done by Savvidu and Myers (2016)
involved three graduate students in a “Movement and Wellness” course in a university music
program. The objective of the course was to “introduce music students to somatic practices with
the aims of preventing injury, developing kinesthetic awareness and exploring the role of the
expressive body as an integral component of musical performance” (Savvidu & Myers, 2016, p.
24). The study found that all three students experienced reduced tension during performance,
greater kinesthetic awareness, and higher levels of concentration. This increase in awareness of
what the performer’s body is actually doing may be a very important factor in prevention.
Pedagogical
Pedagogical approaches to treat or prevent focal dystonia are largely in their infancy.
Only in recent years have some studio teachers begun developing protocols for dealing with the
disorder. One of the primary contributing factors may be that university and conservatory studio
instructors are great performers who have never dealt with the sort of problems in their playing
that their students are encountering (White, 2017). The solution to the student’s problem, in the
instructors’ eyes, is to work harder, which has the potential to make the issue worse if dystonia is
a potential result. There is also a social stigma attached to admitting problems, preventing many
43
students and professionals from seeking help for fear of losing status and employment (Woo,
2011; Zosso, & Schoeb, 2012).
There are interesting and encouraging accounts, however, of performers who have found
ways to treat either themselves or their students successfully and are developing pedagogical
approaches to focal dystonia. Guitarist Apostolos Paraskevas described his recovery from focal
dystonia and put forth six basic principles for retraining: recovery as the main priority, steady
but slow daily routine, focus on the present, becoming a beginner again, be persistence, and
avoiding further injury (Paraskevas, 2014). Given those basic principles, Paraskevas suggested
that the player suffering from focal dystonia not hide their condition since doing this only creates
more tension. Also suggested was to step away from public performance until the retraining is
complete. He also advised recovering players to avoid old repertoire and think about how one
used to play the instrument since this will only cause a return to the old habits (Paraskevas,
2014).
While there is substantial evidence that maladaptive plasticity of the cerebral cortex is
evident in cases of focal dystonia, some believe that the physiology of playing the instrument is
also and perhaps more likely the cause of dystonia-related issues rather than an inherent
biological problem with the brain itself. In other words, the deficiency has been trained into the
neural networks (Woo, 2011). If this is the case, then it is possible that new, non-dystonic
movements can be trained into the brain.
One of the most respected pedagogues dealing with focal dystonia in the wind instrument
world, Jan Kagarice, has developed a protocol that is based on this principle. Jan is the founder
of Musician’s Wellness of North America, LLC. According to their website, their mission is:
…to guide instrumentalists toward efficient and functional performance practices
with a specialization in Embouchure Task Specific Dystonia retraining. Our goal
44
is to eradicate Task Specific Focal Dystonia by educating instrumentalists in
healthy motor acquisition. Motor skills become automatic, thereby freeing the
player to focus on musical communication. (Musician’s Wellness of North
America LLC, 2018)
Jan defined successful retraining as being able to play without any dystonic symptoms
and with more ease and efficiency prior to the onset of focal dystonia. While their website does
not engage in the specifics of the retraining program, it suggests three phases. An initial
consultation where the causes of focal dystonia are explained and the potential for retraining
discussed for each individual. A retraining phase which takes three to five days of intensive in-
person therapy. And, finally, up to 20 follow-up sessions (“About Us,” 2018).
After experiencing symptoms of embouchure dystonia, trombonist Alexandre Ferreira
sought out the help of Ms. Kagarice while a DMA Trombone Performance major at the
University of Kentucky. Mr. Ferreira described an intensive three-day retraining program that
consisted of two four-hour sessions per day in her studio. Retraining began by having the
student write about their life before the disorder and how it has manifested itself in their careers
(Ferreira, 2013). Jan’s approach paralleled Paraskevas’ (year) assertion that it is important to be
open about the condition to begin the retraining process. Ultimately, Kagarice’s (year) retraining
techniques involved relaxation and using different exercises to allow the body to relearn the
playing of the instrument rather than trying to force it to stop engaging the dystonic movement.
Ferreira stated that Kagarice discussed her philosophy of:
How the human body acquires knowledge in general (i.e., how a baby learns to
walk) and summarized that “most of these tasks are learned by trial and error, not
by consciously teaching the body how to do them.” Further she said that relying
too much on sensory input might disrupt in the natural process of acquiring a
45
skill. (Ferreira 2013, p. 93)
The success that Ferreira experienced with Kagarice’s (year) techniques demonstrated the brain’s
ability to change and create new neural pathways.
Trombonist Joachim Fabra has created his own method of treating focal dystonia strictly
from a psychological perspective. In a series of interviews on YouTube,
(https://www.youtube.com/watch?v=M-Sp6-k6wYE&t=39s) Mr. Fabra discusses his recovery
from the disorder and how he approaches treating others. Much like Dr. Farias, he is of the
opinion that psychological trauma is the root cause of musician’s dystonia. In these videos, he
focuses on allowing the person to release their fear, ignoring the dystonic symptoms and allow
the brain to return to a calm state by embracing their emotions to eventually diminish the threat
that is causing distress. Ultimately, the calmed brain can allow the player to regain their old
technique (Scragg, 2009).
Farias (2016) took the recovery process further than Fabra (2009). While Farias (2016)
believed in the psychological factors of recovery espoused by Fabra (2009), movement is also a
critical factor in his rehabilitation therapy. According to Farias (2016), certain muscles that are
used to play the instrument have either become hypertonic (over-stimulated) or hypotonic
(under-stimulated). Often times, a muscle becomes hypertonic because its antagonist muscle, the
one that pulls against it, has become hypotonic. Other muscles may also try to compensate for
the hypotonic muscle, the delicate balance is thrown off, and tremors, or even spasms occur (J.
Farias, personal communication, July 9-12, 2018). His theory is that a muscle becomes
hypotonic because the brain no longer recognizes it, perhaps as a result of cortical shock.
Reactivation of the hypotonic muscle requires exercises that isolate the muscle and force the
brain to recognize it again. Over time, the muscular balance will return. Furthermore, he
advocates that dystonic players not focus on one area of their playing to aid in recovery.
46
Flexibility, playing in all ranges, and variety are essential. Every person is different and a unique
approach tailored to the needs of the individual is the most effective route to recovery.
Pedagogues who are at the forefront of treating focal dystonia in musicians all suggest
successful recovery requires a holistic approach, both addressing the mental and physical aspects
of music performance and playing of the person’s instrument. From this perspective, musicians
can relearn their instrumental technique to play in a new way (Gulbranson, 2014; Peterlevitz,
2013; Zinck, 2004, 2016).
Summary
The current research suggests that focal dystonia is the result of changes in the
somatosensory cortex of the brain. Maladaptive plasticity affects specific areas of the cortex that
represent different parts of the body become blurred and overlap each other. In some cases, the
areas that control a muscle group can become enlarged and take over other areas of the cortex
that control other muscle groups. The result is a change in prioperception causing a lack of
coordination and ability for the fine muscle control necessary to perform on a musical
instrument. Malfunction of the basal ganglia has also been long suspected as a cause of focal
dystonia, although exactly how it happens is still unknown. The most recent research suggests
that changes in the cerebellum could also play a factor in focal dystonia.
Studies suggest that there are genetic, psychological, overuse, and injury factors that
contribute to the development of focal dystonia. Focal dystonia is more likely to occur in those
who have a family history of it. Psychological conditions such as anxiety, depression, and
obsessive-compulsive are often present in focal dystonia patients. Psychological trauma can also
be a triggering factor causing cortical shock, which can cause the brain to block, or no longer
recognize, certain muscles. Overuse can induce maladaptive plasticity, such as was found in the
Byl study on owl monkeys from 1996. Furthermore, overuse can lead to injuries. Injuries can
47
cause the player to engage extraneous muscles to compensate for the injured ones. Ultimately
this leads to muscular imbalance and focal dystonia.
At this time, there are no definitive cures for focal dystonia. Medical, behavioral, and
pedagogical therapies have been used with varying results. Oral medications for Parkinson’s
Disease such as Trihexyphenidyl have not been successful in musicians with focal dystonia.
And other medications like tetrabenaze and clonazepam have been of little help, either. Botox
injections have had limited success treating hand dystonia. It has also had limited success in
those who experience jaw tremors, but no success for treating embouchure dystonia, and may
actually be detrimental for those patients. A non-invasive treatment called Transcranial
Magnetic Stimulation has shown some promise, but more research will need to be done on this
type of therapy.
If the brain can experience maladaptive plasticity, there is reason to believe that it can be
retrained through new behavior. Working on muscle dexterity away from the instrument can
help to retrain the corrupted pathways within the brain. Splinting non-affected digits has shown
to be effective in some cases of hand dystonia to help retrain the dystonic finger. And sensory
tricks, such as wearing a thing glove on the dystonic hand, have also proven to be successful. In
one documented case, splinting has been successful for masticatory dystonia. Unfortunately,
sensory tricks are not available for those experiencing embouchure dystonia, as it would require
a second person be present to apply them.
New pedagogical approaches to focal dystonia are just now being developed. When a
musician begins to experience the symptoms, working harder will only exacerbate the condition.
Pedagogues working to help dystonic musicians believe that a thoughtful, holistic approach is
necessary for recovery. As difficult as it may be, all suggest that the dystonic musician be open
about their condition as the first step in rehabilitation to release some of the tension associated
48
with it. Rather than trying to fight the dystonic movement, they believe that relaxation and
relearning how to play the instrument, not trying to recover what a player once had, will
ultimately be the most successful path.
Results from this literature review helped me craft the substance of interviews with
participants in this study. They also will be used to help suggestions for practice moving
forward and for additional research.
49
Chapter 3 – Methodology
Delimitations
The topic of focal dystonia in musicians is a very large one. It would be impossible to
address all of the different manifestations of the disorder within the musical community in this
study. Players of different instruments and vocalists experience it in varying ways and in
different parts of the body. For this multiple case study, I will be telling the stories of two brass
players that suffered from focal dystonia in their embouchures, more specifically known as Task
Specific Embouchure Dystonia (TSED). I will also include a discussion of my own experience
with focal dystonia. It should be noted that this study does not specifically address focal
dystonia that can occur in the fingers, arm, or vocal folds.
Design
The design of this study is two instrumental bounded case studies combined with an
autoethnography. In order to answer research questions 1 and 2, the content in Chapters 1 and 2 were
constructed after an extensive review of the literature from both the studies in music teaching and
learning and from the medical literature. This set the stage for addressing remaining research
questions that focused on data from live subjects.
The design approach chosen for the remaining portions of this project was a multiple case
study. This helped to answer research questions 3, 4, and 5. Merraim and Tisdell stated that, “a case
study is an in-depth description and analysis of a bounded system” (2015, p. 37). A very similar
definition can be found in Creswell (2013, p. 97). Harrison and his colleagues believed that case study
research should have the goal of understanding a specific issue from the perspective of the participants
of the study. This can best be done by focused analysis on the central issue creating a final product
that is, “descriptive and heuristic in nature” (Harrison, Birks, Franklin, & Mills, 2017). This multiple
case study approach focused on a deep description of three individuals and their life experience with
50
focal dystonia.
Upon reading the case studies, it will become evident that there is a substantial amount of
narrative included. Brandell and Varkas state that the concept of the “narrative case study” is one that
has been used in social work for many years (2001). It is, “A research instrument that is used for the
in-depth study of various social and clinical problems, to understand stages or phases in processes, and
to investigate a phenomenon in its environmental context.” (Brandell & Varkas, 2001, p. 293)
Because the experience of focal dystonia is a clinical problem and goes through many stages, the
narrative form of a case study is the ideal format for studying the disorder. The first two case studies
are individuals that were interviewed and the third is my own autobiographical account.
External Subject Selection
The two external individuals involved in this study were adults who are known within the
field of music performance and their connection with focal dystonia is documented. Neither
participant requested anonymity. However, after sending the transcriptions to them for
verification/member-checking, they did request that some of the individuals mentioned in the
interviews not be identified due to the very personal nature of the information. As I made those
people and places anonymous in the interview transcriptions, it became obvious to me that using
the participants’ real names would ultimately allow a reader to determine who those mentioned
individuals were. With that in mind, I chose to use pseudonyms for both participants to avoid
revealing the people and places.
The two subjects chosen for this multiple case study are Mr. George Jones and Dr. Joseph
Walker. When I began looking for participants, I created a pool of potential subject names that I
had come across either through research or anecdotally. I contacted these individuals by email
and I soon discovered that there were not many in the brass playing community willing to openly
discuss their experience with focal dystonia. It continues to be a topic that is highly stigmatized.
51
In reality there are not many who have fully recovered to this point. Among those who have
recovered, it appears that many would rather no one know about their battle with focal dystonia
because of that stigma.
I was fortunate to have a chance meeting with George Jones at the International
Trombone Conference in Redlands, CA in 2017. He was very open about his recovery from the
disorder; a recovery designed himself with the help of many different practitioners. He was
very willing to help with this project.
Finding a second subject was more difficult. Finally, I contacted Dr. Joseph Walker, a
kinesiologist and a semi-professional musician who has been at the forefront of much of the
neurological research on the topic. He was willing to be a second case. He is a French horn
player who developed focal dystonia, recovered much of his ability, but then relapsed and is
currently not playing. Although he never completely recovered, I felt that his story would make
an effective comparison to George Jones and that his personal insights from the research he has
done would also be of great value. Finally, the cases of both external subjects were different
enough from my own personal experience to make meaningful the data as a whole.
Institutional Review Board
I followed the standard protocols for obtaining Institutional Review Board (IRB) approval from
the University of Southern California via the iStar system. George Jones was solicited in person and
Joseph Walker by email. Both were adults, requiring only their informed consent and both did not
require approval of any institution to participate in the study. The research was determined to be of
minimal risk to the participants and therefore required expedited review. I was the only researcher
involved who knew the identity of the external subjects and related names and places. IRB approval
was granted on May 15, 2018 and the approval documents can be found in Appendix A.
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Interview Question Development and Data Collection
The structure of the interviews was what Turner (2010, p. 755) referred to as a semi-formal
“General Interview.” This type of interview allowed the interviewer to modify the scripted questions
depending on the responses and resulted in a more personal approach, allowing subjects to speak as
openly as possible and on as many experiences as seemed relevant. According to McNamara (as cited
in Turner, 2010, p. 775), the strength of this type of interview is:
...to ensure that the same general areas of information are collected from each
interviewee; this provides more focus than the conversational approach, but still
allows a degree of freedom and adaptability in getting information from the
interviewee.
I saw my role to be a facilitator for the subjects to tell their story, with the intent of helping
others gain a better understanding of focal dystonia.
Scripted Questions
Initially, my strategy in formulating the scripted questions was to focus on the recovery
process. I intended to only ask the participants about their approach to rehabilitation. But as I
collected more information from the related literature, it became obvious that knowledge of the
precipitating factors can be an essential part of treating the disorder. A prime example was Jan
Kagarice’s protocol, described in Fletcher (2008), that first requires the player describe, in as
much detail as possible, how they developed focal dystonia. Dr. Joachin Farias further
emphasized the importance of discussing manifestation at the embouchure dystonia seminar that
I attended in July of 2018. The first activity he had each person in the room engage in was to
introduce themselves and tell the rest of the participants their story of developing focal dystonia.
Further, the interview questions were developed from the knowledge acquired from the review
of literature and my own personal experience and can be found in Appendix C. The questions were
53
initially categorized into two larger concepts: pre-dystonia and post-dystonia. The pre-dystonia
category contained questions about the participant’s experiences playing his instrument, his knowledge
of focal dystonia before the onset of it, and how it manifested itself. The post-dystonia category
questions addressed their personal reactions to having the disorder, and what strategies were used to
rehabilitate. Each of the primary questions had related sub-questions should the participant have not
adequately answer the primary question. The intent was to have enough questions to probe the
specifics of each area and encourage the participant to speak freely.
I first wanted to establish their early development as musicians. I enquired about how were
they taught and were there any traumatic events during their formative years that particularly came to
mind? From there I wanted to ask about the first experiences with symptoms. Were there any
incidents that they felt might have triggered their symptoms? I was also interested in what they thought
about their colleagues’ perception of what might have been happening. The scripted questions then
addressed the participant’s rehabilitation strategies and progress.
As one might imagine, the interviews did not go exactly as anticipated. The transcripts of the
interviews show that the participants often went their own direction after a question was asked. This
was particularly true of the Joseph Walker interview, although it does follow the earlier mentioned
goal of my being simply a facilitator for them to tell their stories. In some cases the participants
answered my questions without my asking them. Nonetheless, I was ultimately able to get answers to
my questions from both participants, even if the interview transcripts appear somewhat disjointed. The
case studies presented in Chapters 4 and 5 reorganize the interview information into a more logical
sequence.
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Data Collection
While an in-person interview would have been the most desirable, it was not practical as the
two subjects live in other parts of the country. The next best option was to request speaking to them
via Skype. They agreed and both interviews were scheduled for a Skype call, which allowed a more
personal interaction with the subjects. Interviews lasted approximately 55 minutes. The interviews
were recorded and transcribed for later analysis. Full texts for the interviews are provided in
Appendices D and E, although I have not included parts of the discussion that were not relevant to the
research topic.
The interview with George Jones took place on June 6, 2018 via Skype and was recorded by
Call Recorder for Skype for later transcription. I was at home and the interviewee was in his office at
his place of work. The interview lasted for approximately 55 minutes. The interview with Joseph
Walker took place on June 15, 2018. Because of technical issues with Skype, Joseph Walker’s
interview was conducted by speakerphone and recorded using Audacity. I was at home and the
interviewee was in his office and the interview lasted for approximately 50 minutes. I later transcribed
both interviews.
The design of the study also included an autoethnography, a biographical self-reflection
of my own experience with focal dystonia (Chapter 6). Ellis, Adams, and Bochner (2011)
defined autoethnography as, “An approach to research and writing that seeks to describe and
systematically analyze personal experience in order to understand cultural experience.”
Similarly, Bartlett and Ellis (2009) stated, “Autoethnography is an autobiographical genre that
connects the personal to the cultural, social, and political.”
I chose to include an autoethnography to offer yet another detailed perspective which was
meant to enhance the findings. According to Clandinin & Connolly (as cited in Wall, 2006),
It is suggested that the freedom of a researcher to speak as a player in a research project
55
and to mingle his or her experience with the experience of those studied is precisely
what is needed to move inquiry and knowledge further along. If a researcher’s voice is
omitted from a text, the writing is reduced to a mere summary and interpretation of the
works of others, with nothing new added (Wall, 2006, p. 3).
With this in mind, I strongly believe that my personal experience was an essential element in relating
the stories of the two participants in a more meaningful way.
Wall suggested that there is substantial variation allowed in conducting an autoethnography and
the resulting product (2006). After analyzing the data from the interviews and writing the case studies,
I decided to structure the chapter relating my personal experience in the same format for the sake of
clarity and consistency. I used the same coding system for the personal reflection chapter again for
clarity and to show the commonalities between my experience and those of the participants.
Trustworthiness of Data
After transcribing the interviews, the transcripts were sent to the participants to verify the
accuracy of the information, as is standard procedure in member-checking approaches. I also allowed
them to redact any information that they preferred I not share. Both participants verified the
information in the transcripts that are found in Appendices D and E. I chose not to do a second
member check of the case study chapter itself. My reasoning for this was that I preferred for the
conclusions of my data analysis to be my own; and not be colored by another’s opinions of my
findings.
Data Analysis
According to Saldaña (as cited in Elliot, 2018), “A code in qualitative inquiry is most often a
word or short phrase that symbolically assigns a summative, salient, essence-capturing and/or
evocative attribute for a portion of language-based or visual data” (p. 2855). Interpretation of the data
involved searching for common themes, expressions and ideas (Turner, 2010). Turner advocated using
56
a word table to show data from individual cases that fit a framework—an approach that I chose to use.
This can allow the researcher to find the similarities and differences between the cases.
My interest in ultimately finding solutions to focal dystonia led me to create a coding system
that was divided into two sections: precipitating factors and recovery factors. Within these larger
sections, I drew categories from the review of literature. The literature shows there are common
psychological, environmental, and behavioral factors in musicians that develop focal dystonia. While I
did have those priori codes in mind, I have combined them with an emerging code approach as
Creswell (2013, p. 185) advocated.
I first went through the transcripts using either single words or short phrases that captured the
essence of the different experiences the participants went through in their focal dystonia journey. After
going through the transcripts several times, I created a list of these words and expressions as Turner
(2010) suggested. For example, words and expressions included: first responses, readiness for
recovery, and motivation. After careful consideration, I found that many of the initial codes fit inside
the larger concepts of psychology, environment, behavior, and manifestation. This evolution of these
emergent codes is shown in Figure 7. The codes were then refined into a second set of codes that are
listed in Tables 1 and 2.
57
Initial Codes Refined Codes
Specific focal dystonia symptoms
Perception of symptoms Manifestation/Exacerbation
General knowledge of focal dystonia
Personal factors
Contributing factors
Mental response to diagnosis
Low points Psychological Factors
Motivation
Goals
Readiness
Employment
Traumatic Events Environmental Factors
Teachers
School
Practice habits
Actions taken Behavioral Factors
Response to symptoms/diagnosis
______________________________________________________________________________
Figure 7. Emerging Code Evolution
58
Table 1: Precipitating/Triggering Factors
________________________________________________________________________
Terms Definition
Environmental Things that affect the musician’s daily life such as their job,
School, colleagues, teachers, and traumatic events.
Psychological The musician’s mental state before the onset of symptoms.
This includes mental conditions such as anxiety, depression,
and perfectionism.
Behavioral Specific types of behaviors engaged in by the musician,
including perfectionism, and a strong commitment
to improve.
Manifestation/Exacerbation How the musician first perceived the symptoms and how the
symptoms progressed
Diagnosis Diagnosis by medical professional, and potential solutions
suggested by medical professionals.
59
Interpretation of the data involved looking for common themes, expressions and ideas (Turner,
2010). Creswell cited the term cross-case synthesis from Yin for analyzing data from a multiple case
study such as this one. He advocated using a word table to show data from individual cases that fits a
framework. This can allow the researcher to find the similarities and differences between the cases
(Creswell, 2013). Answers to research question 5 “In what ways do the three case studies relate to the
current focal dystonia research?” are found in Chapter 7. A discussion of the implications for practice
and further research conclude the chapter.
Summary
To make the subject matter of this dissertation manageable, I have only addressed focal
dystonia as it manifests itself in the embouchures of brass players. The first two chapters report
the most recent scholarship on focal dystonia from both the medical perspective and the personal
experience of performing musicians. The design of the inquiry is two instrumental bounded case
Table 2: Recovery Factors
_________________________________________________________________________
Terms Definition
Psychological Mental state(s) after diagnosis; first response, low points,
readiness, motivation, and goals.
Solutions/Therapies Interventions sought out by the musician. These may
affect both the psychological and behavioral factors.
Epiphanies/Tipping Points Moments of personal discovery, both good and bad.
Behavioral Changes in behavior during recovery.
Environmental Changes to the musician’s environment during recovery.
60
studies containing two outside participants and an autoethnography. The two subjects were
solicited personally by me and agreed to be participants in this study.
A general interview with scripted questions was conducted with both participants
remotely; one by Skype and one by phone, with both being recorded for transcription. The
transcripts were then sent to the participants for verification and approval of the content. Data
were analyzed using a combination of both priori and open coding. Those codes were further
refined into a set of descriptive second level codes.
Chapters 4 and 5 describe the experiences of the two participants in detail with an
analysis of their precipitating and recovery factors using the coding that was developed. Chapter
6 is an autoethnography that uses the same coding system to analyze the author’s experience.
Chapter 7 brings together the two case studies and autoethnography, and concludes with
implications for further research and practice.
61
Chapter 4 - George Jones Case Study
Introduction
This chapter will present a bounded instrumental case study of a musician who developed
embouchure dystonia. A brief background will first introduce the case followed by his personal
story of focal dystonia
1
. I have structured the chapter to create a narrative chronology of the
subject’s development of focal dystonia as set forth in the interview questions. There is then an
analysis of the precipitating factors based on the coding that was developed. The next section
contains a similar chronology of his recovery process followed by the coded analysis of the
recovery factors. The chapter concludes with a bringing together of the analysis of the
precipitating and recovery sections that addressed research question number 3: How have two
specific cases from the world of brass music performance dealt with recovery from embouchure
dystonia? And research question number 5: In what ways do the three case studies relate to the
current research?
Background
At the time of this study, George Jones was the Professor of Trombone/Euphonium at a
large university in the United States. Before he arrived at that position, he served on the faculties
of three other major American schools of music. He developed embouchure dystonia while
teaching trombone at a one of these music schools, which affected his employment there and
forced him to step away from public performance. Through much work and determination, he
was able to rehabilitate his playing and return to performing professionally. He has been an
orchestral and chamber musician in several important ensembles during his career and an active
1
For the remainder of this study I have chosen to use the more encompassing term “focal dystonia” when referring to
the subjects’ medical condition.
62
clinician and recitalist throughout the United States.
Personal Story with Dystonia
Precipitating Factors
George first began experiencing his dystonic symptoms while practicing, noticing that his
second-space C in the bass clef was not centering properly. At the same time, he was asked to
play in a low brass ensemble comprised of some of the world’s most famous players. He recalls
dissatisfaction with his playing, as he had trouble with late and inaccurate entrances in the soft
sections of the music. Naturally, he did what all musicians are taught to do, which is to return to
the practice room and work on the problem. He spent significant time working the second-space
C. Unfortunately, his diligent practice led to a worsening of the dystonic condition.
The aforementioned note became more and more unstable, and within weeks the dystonic
symptoms began to spread to other notes on either side of it; first to Db and B, then to D and Bb.
Eventually it expanded further, particularly in the low range in which the condition continued to
worsen. Jones relates:
It got to the point where I just couldn’t play anything. The most
frustrating part was the harder I tried, the worse it got. And as musicians we’re
not accustomed to that. We’re used to…when you practice, you improve. It
didn’t follow the normal parameters of our lives…It was a pretty quick downward
spiral. (Appendix D, p. 143)
At the same time, Jones was under a tremendous amount of personal pressure. George
and his wife had given birth to their second child, he was in the process of making a solo CD,
and had recently left a tenured position at a university to become the trombone professor at a
major conservatory. Unfortunately, he did not feel that he was a good fit at this conservatory. It
is an orchestral training ground and although he had plenty of orchestral experience, the bulk of
63
his playing was as a chamber musician and recitalist. There were many great players there who
were all working to win auditions for a very small number of major symphony positions.
Meanwhile, Mr. Jones, the new professor of trombone, was under immense pressure to verify
that he deserved his position, but he was not playing at the level expected of someone in his
position because of focal dystonia. The students did notice and gave him negative reviews.
According to George, the hyper-competitive nature of the school was not conducive to his
recovery.
Research by Lewis (2016) and Altenmüller & Jabusch (2010) has found that injuries to
the facial muscles can be a factor in the development of focal dystonia in brass players. I asked
George if there was such an instance shortly before his symptoms appeared where he suffered
such an injury. He recalled a physical trauma that may have played a part in his development of
dystonia. He had been roughhousing with his son, whose head hit his upper lip, causing a lot of
swelling. Shortly after that injury, he went on a solo recital tour in the southern United States
and was not playing up to his standard immediately before giving a recital at a university. At the
last minute, he decided to change his program from some of the more difficult music he was
going to play to make it more manageable. According to George, he “muscled through it” but
did not play well.
While George does not believe that any ‘one thing’ caused his dystonia, he does feel that
all of those experiences were factors in its development. He is also of the belief that there is a
genetic predisposition for developing dystonia. He does not claim to have scientific knowledge
of this, but research has shown that focal dystonia is more likely to occur in people who have a
family history of it (Schmidt, Jabusch, Altenmüller, Brüggemann, Lohmann, & Klein, 2009;
Stojanović, Cvetković, & Kostić, 1995; Waddy, Fletcher, Harding, & Marsden, C. D., 1991).
64
The specific type of focal dystonia from which George suffered is colloquially known as
“Lip Lock” in the neurological community. When attempting to play, the orbicularis oris
muscles surrounding the mouth, shown in Figure 8, spasm and clamp down. The harder he tried
to blow air through his lips, the tighter they would become. As with any Dystonia, there was no
pain, just a spasm of the muscles. According to George, this is a very typical expression of
dystonia that appears in low brass players. Fletcher (2008) also found that lip lock is the most
common type of dystonia in trombone and tuba players, while lip pulling by the levitator labii
superioris is most common in trumpet and horn players.
Figure 8: Public Domain, Gray’s Anatomy, 1918. Retrieved from
https://en.wikipedia.org/wiki/Orbicularis_oris_muscle#/media/File:Orbicularis_oris.jpg
When George first began experiencing dystonic symptoms, he knew nothing about it.
His response was to seek out his former teachers, in hopes that it would be a quick fix.
Unfortunately, his teachers simply scratched their heads: “they typically…people don’t know
anything.” One suggested that he watch videos of himself playing well, and replicate what he
was seeing. That was of no use. As a member of the brass community, he had heard that
65
dystonia was a death warrant for a player’s career. Beyond that, the community either knew
nothing or did not wish to speak about it.
After seeing various teachers, he sought out medical help, first from his general
practitioner and then specialists. Eventually he ended up in a neurologist’s office. This
particular doctor was not sensitive to the needs of a professional musician who makes a living
playing an instrument. The doctor’s response was, “Yeah, you have this dystonia thing. Why
don’t you just switch over to the saxophone?”
George sought out neurologists who also had a musical background and were researching
musician’s dystonia and found Dr. Richard Lederman at the Cleveland Clinic in Ohio. Dr.
Lederman recorded video of George’s embouchure, showed it to him in slow motion, and gave
him the diagnosis of focal dystonia. Dr. Lederman informed him that there was not any help
available, but that there had been very limited success with injecting patients with Botox.
George had also talked to a prominent tuba player who had tried Botox injections but had no
success. He made the appointment, but ultimately was talked out of it by his wife. He candidly
admitted that he is very glad that he did not keep the appointment.
Analysis of Precipitating Factors
Among George’s precipitating factors, environmental elements appear to be the most
compelling. Fletcher (2008) found that a job change is one of the many common triggering
factors in embouchure dystonia along with stress from other outside factors. George had left a
university teaching job where he had been recently granted tenure to accept a new position in
what he perceived to be a more prestigious school. He was not immediately given tenure at the
conservatory, so his job situation had changed from extremely stable to unknown. At the same
time, his wife had just given birth to their second child and he was in the process of making a
solo recording. All of these factors may have created substantial psychological stress for him.
66
George did not cite any psychological trauma that may have factored into his
development of focal dystonia during his interview. However, it is very possible that his
perception of not playing up to a high standard while performing with the highly acclaimed brass
ensemble when his first symptoms appeared could have created a psychologically traumatic
experience. He also did not believe that he suffered from any of the typical psychological
conditions such as anxiety or depression that are often present in musicians who become
dystonic as noted in Altenmüller and Jabusch (2010).
While not officially diagnosed by a psychologist, George did admit that he demonstrated
a certain amount of obsessive-compulsive behavior that contributed to the worsening of his
dystonic symptoms. The National Institutes of Mental Health (NIMH) defines Obsessive-
Compulsive Disorder as, “a common, chronic and long-lasting disorder in which a person has
uncontrollable, reoccurring thoughts (obsessions) and behaviors (compulsions) that he or she
feels the urge to repeat over and over” (“Obsessive-Compulsive Disorder”, n.d.). The
compulsive behavior in which George engaged was to focus solely on the few notes that he was
having difficulty producing with accurate attacks and good tone, and ignoring the other aspects
of playing the instrument.
Behaviorally, George did what most musicians do when presented with a problem
playing the instrument; he focused on it relentlessly at the expense of other aspects of his
playing. This is very common among those with musician’s dystonia, and only serves to make it
worse.
The symptoms become the complete focus of the player's attention and the
practice regimen is increased. Unfortunately, despite the player's best efforts, the
problem worsens while fear, anxiety and stress continue to build. At this stage, the
player is either afraid others will notice the problem (or the problem has already
67
been noticed) and embarrassment and self-consciousness become
constant…Often the dystonia progresses, until playing is virtually impossible
(Fletcher, 2008, p. 33).
The manifestation and exacerbation of Mr. Jones’ focal dystonia is common in the brass
world. It usually begins without pain and the player perceives a small change in the feeling of
playing the instrument, often on one or two notes (Fletcher, 2008). In his case, it was the
second-space C in the bass clef staff. The high-stress situation of playing with a group of world-
famous low brass players only served to create more problems with inaccurate and late
entrances. The player then becomes more hesitant to start a note because of increasing self-
doubt that it will be produced accurately. The result is a self-fulfilling prophecy where the lack
of confidence will likely cause an inaccurate attack, creating a snowball effect. He doubted
himself more and more as he worked harder to solve the problem, only to have the entrances
become less reliable and delayed. The issue spread to the other ranges of the instrument until he
was not able to play at all.
At the time of diagnosis, the only possible solution that the doctor gave him was to try
Botox injections, but informed him that it wasn’t likely to help very much. Fortunately, George
decided at the last minute to not go that route, as it would only serve to deaden the nerves and
not allow for the fine motor control necessary for the embouchure to function. Furthermore,
those who now work with musicians that have focal dystonia, such as Dr. Farias, strongly advise
against treatment with Botox as it can do permanent damage to the nerves of the facial muscles
(J. Farias, embouchure dystonia seminar, July 9-12, 2018).
68
Recovery
After receiving the diagnosis of focal dystonia, George experienced severe depression.
This was his lowest point. He could not play, but he had a new job, teaching trombone at a new
school. He also had two young children and a mortgage. He was not tenured and was receiving
poor reviews from his trombone students at the conservatory. At this point in his life, George
considered changing careers.
I asked George if there was a moment, while he was seriously considering a career
change, when he made up his mind to not quit playing and commit himself to recovering. He did
not have a specific answer, but said that he did not feel that he was done yet. He was not
satisfied with the neurologists’ suggestions that his career was over.
I’ve always felt, in my own mind, that I’m scrappy. I’m George v.
Goliath…Here I had this great new job, and the neurologists would
say, “Well, we don’t have any treatments. Look for another career.”
Then you go to another doctor they say, “Well, we don’t really know.”
That was unsatisfactory. (Appendix D, p. 145)
Thankfully, he had a support system. His wife encouraged him to seek psychiatric help; he did
so and found this very helpful. He also took part in Eye Movement Desensitization
Reprocessing therapy (EMDR).
EMDR is an emotional trauma therapy that uses eye movement to heal the wounds of
traumatic events. According to the EMDR Institute, much like the body healing from a wound,
the brain can heal from traumatic events once the “block” is removed that allows the bad
memory to no longer stay with the person creating immense emotional suffering. The claim is
that EMDR works more quickly and more effectively than traditional psychotherapy. Additional
information is available on the website: www.emdr.com.
69
It helped me empty my emotional garbage can. It was extremely
important. I didn’t know it at the time, but I couldn’t even think
straight because I was caught up in this whole thing, and so worried
and stressed out. So this first step of acknowledgement, and coming
to terms with things, was imperative for me. (Appendix D, p. 144)
Along with psychological therapy, George also sought out physical therapy. He received
treatment from a renowned Alexander Technique (citation) teacher for musicians. He related a
very poetic moment in his sessions:
She manipulated my head and I watched my neck lengthen. I saw it in the mirror.
I probably grew an inch. I said, “Wow, that’s unbelievable! Can you do that
again?” And she said, “I don’t need to, that’s yours.” (Appendix D, p. 145)
In those sessions he was introduced to “somatic” methods, movement therapies that are
holistic, as opposed to just medical. Somatic methods or somatic movement is a process
whereby movements are made while concentrating on the internal experience of the movement,
and ignoring the appearance or result of the movement. The concept behind somatic movement
is to focus completely on the internal sensations while making slow, deliberate movements.
Eventually the body learns the movement and then it can be sped up while maintaining control
and form.
While the physical therapist’s infectious enthusiasm for healing was an important factor,
George did share one part of the experience that was not helpful. She said to him, “Just do these
things, you’ll be fine.” That was too simplistic and was not the case for him. George was still a
long way from recovery. There were overlapping experiences during the time of the
depression—seeing medical doctors and the physical therapist while experiencing other
pressures of life. But once he felt hope and forward impetus, he felt he was in a position to begin
70
rehabilitation.
A visit to another Alexander Technique therapist introduced him to the concept of Body
Mapping; an offshoot of the Alexander Technique. The Andover Educators, a non-profit
organization dedicated to helping musicians play with greater physical awareness defines Body
Mapping as follows:
The body map is one’s self-representation in one’s own brain. If the body map is
accurate, movement is good. If the body map is inaccurate or inadequate,
movement is inefficient and injury-producing…Body Mapping is the conscious
correcting and refining of one’s body map to produce efficient, coordinated,
effective movement. Body Mapping, over time, with application, allows any
musician to play like a natural… Body Mapping not only helps musicians avoid
injury; it also enhances musicians’ technique (Andover Educators, n.d.).
George also engaged in Feldenkrais training. Feldenkrais is another somatic movement
method developed in the middle of the twentieth century. It uses conscious movement, similar to
Body Mapping, and is based on physics, biomechanics, neurology, and learning theory to
stimulate neuroplasticity (Feldenkrais Method, n.d.)
Body Mapping, along with Feldenkrais training, gave George a better sense of kinesthetic
awareness of what his body was actually doing. He noted that this knowledge and awareness
brought him to a sense of “neutral,” so he could think more clearly about retraining his trombone
playing. The movement therapies had not fixed his problems, but they had, “set the stage,” for
potential recovery.
He had come to a higher degree of kinesthetic awareness, but the lip spasms were still
occurring. It had been a year and a half since his initial diagnosis. George then sought out the
help of Jan Kagarice. Jan is well known in the music community, especially among brass
71
players, for working with people suffering from embouchure dystonia. He worked with her for
five days, and saw marked improvement, but dystonic symptoms still persisted to the point that
that he was not able to play in public and simultaneously did not receive tenure new school post.
“I did feel like I had some forward momentum, though…I felt like I was going to get
better. I was right on the edge of being able to do some stuff.” (Appendix D, p. 148) That is
when he devised his own way to recovery. George took the many things that he had learned
from the various instructors, consolidated it, and created his own protocols. He felt that he was at
a point of his body being “neutral,” was kinesthetically aware, and had improved his breathing.
Adding to all of this information, he had read a book called Mind and Brain by Jeffrey
Schwartz (Appendix D, p. 148). He was introduced to “neuroplasticity,” a theory that the brain
can learn new paths, and even reorganize itself, regardless of age. In the book, Schwartz cited
the study done by Nancy Byl (1996) and colleagues that had determined through tests with
monkeys that ten thousand repetitions appeared to change the way the brain fired and perceived
movement
2
. George zeroed in on this work and the number ten thousand as the way to achieve
what he wanted: to put a “price tag” on the number of repetitions required.
George decided to start from an embouchure effort level of ‘zero’ on the instrument: on a
scale from zero to a maximum effort of ten. This was the point where he could put the
instrument to his lips, blow air through it, and move the slide: essentially playing ‘air trombone’.
He picked a short fanfare-like section from Ballade by Eugene Bozza (1905-91), a major solo
work for trombone. Everything was the same as playing the instrument, but without any sound
other than the air rushing through the horn. For him, the most important thing was that he was
able to do this without a lip spasm. “Well, there’s no sound. But there’s no spasm.” (Appendix
D, p. 150) It was the first time since his problems began that he was able to simulate playing,
2
See Chapter 2
72
spasm free.
The other aspect of his retraining process was to also reconsider what he was thinking
while playing. George described his old approach to playing as very aggressive, “I was ‘eating
red meat’…Grrr!” (Appendix D, p. 150) He admits he did not carefully think about it, but it
worked really well for him when he was younger. The old way of thinking did not work
anymore; it had to change. To help him change his mental approach to the instrument, he wrote
short sayings on index cards that were meaningful to him such as, “Blow freely,” focusing on the
thoughts on each card as he blew air through the exercise. There were about one hundred and
fifty cards, and he would go through them, making check marks every ten repetitions, because he
wanted to count them all up to ten thousand.
While he stayed at ‘zero’ on the embouchure effort scale, he felt that he would need an
effort of two or three to actually get a sound. But whenever he tried to add the slightest effort,
the lips would immediately spasm up to ten on the effort scale. Therefore, he went back to zero
to be able to keep moving air and achieve spasm free repetitions. At approximately repetition
three thousand, without trying at all, sound suddenly popped out of the instrument.
In my head I’m still at zero. It was totally unrefined. It felt totally out of control.
And I was so happy. It didn’t matter that it didn’t sound good. All that mattered
is that I created sound, spasm free…
It took a long time to get to that point. And I think it’s meaningful that
I had this foundation that I described to you. But all of these
repetitions, as best as I could muster, they were thoughtful. I was
always thinking about what I wanted to happen. (Appendix D, p. 152)
This was his epiphany, his “Aha!” moment. All of the foundational work plus the
repetitions had yielded a spasm free playing experience and he knew at that moment he would be
73
okay. He focused on the program that he had created for himself, even when there were bad
days, refining the final product, and building enough confidence to be able to play in public.
One of the other critical elements for George was the concept of not trying to recapture
what he once had. Watching old videos of his playing had only made things worse. He knew
that he had to reinvent himself. Subsequently, when working with people who are trying to
overcome dystonia, he tells them, “Different is good.” He found that if it felt like it once did, he
was not making progress. He has come to believe that creating a new way to play is necessary to
bypass the old, aberrant neurological pathways.
Leaving the conservatory turned out to be a very positive move for George. Although he
said, “I took a big step down the career ladder,” going to his current university position, in terms
of the prestige of the job, he is very happy there. The students are respectful and curious: it is a
far better fit for his personality than the conservatory.
A final aspect of George’s recovery was that he found it necessary to redefine himself as
a musician. Prior to his dystonia, playing the trombone was everything to him. It defined who
he was: the quality of his trombone playing was tied powerfully to his self-worth. Through
therapy and recovery, it has become only another part of his life. Redefining who he is as a
person and musician took some of the pressure away from playing the trombone. It allowed him
to approach the instrument in a calmer mental state.
Shortly after arriving at his current position, he started his own company, which
publishes brass pedagogy books. The first books were authored by George himself, and
contained exercises that he developed as part of his rehabilitation and teaching. They are not
specifically intended for dystonia sufferers, but for all players. His company now offers over 35
titles that involve 56 authors.
74
Analysis of Recovery Factors
When George was diagnosed with focal dystonia and informed that his playing career
was likely over, he was psychologically at his lowest point: sinking into clinical depression. It is
certainly not surprising that a person who was providing for his family by playing the instrument
would experience this. Although he seriously considered changing careers, it was the belief that
he was not done as a musician that played a role in recovery. Also, his personal dissatisfaction
with doctors judgments that there was nothing they could do help provided additional motivation
to do everything he could to find a way to recover.
An important psychological aspect of George’s recovery was redefining himself as a
musician. In his case, a major factor was his identity. Being able to separate his personal self-
worth from the way he played the trombone was an important part of his rehabilitation. No
longer did he feel that he had to put immense pressure on himself to be perfect because he had
other interests in his life, such as his publishing company. The instrument and its performance
became another part of his life, not the center of it.
Interestingly, the negative experience at the conservatory was not a defeating factor. He
had the support of his family to do what he needed to do to get better. Encouraged by them, he
was able to seek out various therapies that essentially set the stage for his recovery. After his
fifth year at the conservatory, he decided to take the final year off, knowing that he would not be
granted tenure in his sixth year, and dedicated himself to the recovery process. A year later, he
began his current position. The new, more positive environment was another factor that enabled
George to complete his recovery process.
To help him find the road to recovery, George explored a number of different solutions:
psychotherapy, Eye Movement Desensitization Reprocessing therapy (EMDR)
3
, Alexander
3
See p. 67
75
Technique, Body Mapping, and Feldenkrais training. The combination of these different
therapies not only helped him physically, but also more importantly, put him in a psychological
position to begin retraining. According to George, he was able to attain a ‘neutral’ mental state
where he could calmly and methodically address his recovery process. It was at that point that
he began getting more specific training on recovering his ability to play the instrument. Without
having the mental part of his condition addressed, the rehabilitation process may not have been
possible at all. Being able to approach the recovery process from a calm mental state also
allowed him to push forward when there were bad days or times that he felt that he might be
regressing.
Behaviorally, George conceded that his history as a player was based on rapid
improvement without thinking excessively about it. Research by Fletcher (2008) found a
behavior pattern that musicians who develop dystonia are often those who are defined as ‘natural
players’. Essentially, they became very proficient on their instrument quickly and effortlessly
without having to think about it very much. The reasons why these types of players are more
susceptible to focal dystonia are not known, but it may be that the brain neurology that allowed
them to learn so quickly can also more easily engage in maladaptive plasticity.
After reading Schwartz’s Mind and Brain, George discovered that neural pathways could
be rebuilt from a behavioral approach. This is where he was introduced to the idea that it takes
the thousand repetitions to learn a task. By providing a ‘price tag’ on the recovery process, it
gave him a goal that he saw as being achievable.
Changing his behavioral approach to the instrument was crucial to George’s recovery.
Rather than trying to play his way out of dystonia, he did as much as he could do with the
instrument without any lip spasms occurring. He allowed himself to just put the instrument to
his lips and blow air without making any sound. As long as no spasms occurred, he felt that he
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was making progress.
Another behavioral change was changing the way he thought while blowing air through
the instrument. He knew that the old way was not going to work and he needed to find a new
approach by creating a set of cards he would read while doing his ‘air trombone’ exercises. His
process of not trying to recreate his old way of playing is supported by Paraskevas (2014) who
recommends that players recovering from focal dystonia not try to recapture what they once had,
but rather create a new way of playing the instrument.
Conclusion
George’s case offers a vivid description of events relating to research question 3: How
have two specific cases from the world of brass music performance dealt with recovery from
embouchure dystonia? His experience also supports much of the current research on the
manifestation of focal dystonia that was stated in research question 5: In what ways do the three
case studies relate to the current research? During his development of focal dystonia, he was
subjected to many of the coded precipitating factors: environmental, behavioral, and
psychological. He is a natural player who developed dystonia in his mid-thirties. The symptoms
began during a period in his life when many changes were occurring at the same time to create a
substantial amount of stress. The job environment was also highly stressful. His high drive to
improve and compulsive behaviors in trying to initially remedy the first symptoms only furthered
his symptoms until public performance became impossible.
George’s story of recovery, which is unfortunately not common to this point, is one that
can provide hope for those brass players who are working to recover from embouchure dystonia.
He was able to make changes in the recovery factors of psychology, behavior, and environment.
He experienced several epiphanies during his recovery process and developed his own solutions
and therapies that were particular to his needs. However, it also demonstrates that the player
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looking for solutions will not find them easily.
I had a hell of an incentive to get better. It wasn’t like I could take it or leave it.
And with some of the people who contact me it really is like that. They’re tired
and they’re seeing what they can do with it. There’s very little incentive for them
to put in the work that’s necessary (Appendix D, p. 143).
In our interview, George mentioned that he has worked with people who suffer from
focal dystonia, but do not appear to have the incentive to put in the dedicated work that will be
required for recovery. This is not to imply that just having an incentive to recover is all that is
necessary. What it does imply is an extended commitment is required for a chance at recovery.
He believes that each person has to find his or her own method to recover. Although he makes no
claim to be a scientist or neurologist, he is of the firm belief from his own experience that there is
no ‘prescription’ for recovery.
Similar to the findings of Paraskevas (2014), George believes it is imperative for focal
dystonia sufferers to step away from performing during their recovery period. The pressure
inherent in performance will only cause the player to regress to the old habits.
I think it’s hardest for people in those big-time orchestras. If you’re going in to
rehearse every week, it’s just not going to get better. Even if you work really hard
during the week to retrain, and then perform on the weekend, you’re just going to
deepen the groove (of dystonic movement)…you have to take time off (Appendix
D, p. 154).
George’s recovery shows that the possibility exists to overcome focal dystonia with a
smart, holistic approach. He tackled his psychological demons first, which set the stage to
overcome the physical problems. An important take away from his story is that there was no one
“magic bullet” or a single exercise that helped him recover. Mr. Jones strongly believes that
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each person dealing with focal dystonia has to find what works for him or her. Everyone is
different and a rigid protocol is self-defeating. He went through many different therapies before
he was able to develop a method that was effective for him. Copious amounts of information was
gathered, his own system devised, and he stayed committed throughout. It took him
approximately two and one half years from the time of diagnosis to full recovery.
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Chapter 5: Joseph Walker Case Study
Introduction
This chapter will present a second bounded instrumental case study of a musician who
developed embouchure dystonia. Similarly to the George Jones case study, I have structured the
chapter to create a narrative chronology of the subject’s development of focal dystonia as set
forth in the interview questions. I provide an analysis of the precipitating factors based on the
coding that was developed in Chapter 3. The next section contains a similar chronology of his
attempts at rehabilitation process by the coded analysis of the recovery factors. The chapter
concludes with a combination of the analysis of the precipitating and recovery sections that
addressed research questions number 3 and 5.
Background
At the time of this study, Joseph was a professor of kinesiology at a university in the
United States. He is a French horn player who initially desired to have a career as a performing
artist. A traumatic experience during his freshman year at music school caused him to give up
performing on the horn and change his major to kinesiology. While pursuing his doctoral degree
in kinesiology Joseph began playing the horn again, eventually earning a principal horn position
in a professional orchestra. In 2001 he was officially diagnosed with embouchure dystonia while
a member of that orchestra and was forced to resign his position. He made significant progress
in recovering from focal dystonia only to suffer a relapse. His current areas of expertise as a
kinesiologist are movement disorders and embouchure dystonia.
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Personal Story with Dystonia
Precipitating Factors
Joseph began playing the horn at age 8 and grew up in a family of horn players. As a
youth, he took to playing the horn very naturally. Regardless of his natural ability to play the
horn, some of his early experiences created immense psychological stress. One technique a
particular teacher used was to have the student play a passage or etude perfectly five times in a
row. If a mistake were made, whether it was on the first or fifth time, the student would have go
back to the beginning and start over. Joseph admitted that this technique put a lot of stress on
him as a young player. There were also other situations where stress was applied in odd ways,
although he did not clarify those. He does believe that the early stress he experienced as a young
player had a profoundly negative effect on his psyche. Joseph also admitted that he is a
perfectionist, which added to his stressful experiences playing the horn in his formative years.
Nonetheless, he developed into an excellent horn player and had the opportunity to attend a
number of prominent music schools.
Joseph enrolled in a prestigious American music school at the age of 17. After taking his
placement auditions, he placed very high within a large horn studio, even above a number of
graduate students. This was a very impressive result, but he was not able to play in any of the
orchestras that semester as he had a job working for the marching band in the fall. In the
following spring semester he auditioned for the orchestra. According to Joseph, his audition was
terrible, but he was assigned to the principal horn position of the top wind ensemble because of
the potential that his teacher saw in him.
This was a very prestigious position, especially for an eighteen-year-old freshman,
however the wind ensemble director was not supportive.
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Before I’ve played one note for him, he calls me into his office. He has me
sit down in front of his big desk, and says, “I’ve never had a freshman,
ever, in any of my ensembles.” He’s basically telling me that he
does not like the fact that I’m playing principal. That he does not care
how good I am, and that I’m going to have to prove myself to him.
Again, this is before I ever played one note for him.
(Appendix E, p. 158)
Pressure to prove himself was applied immediately. At the first rehearsal the ensemble played
the Overture to Mignon, by Ambroise Thomas, which contains a lengthy horn solo. Sitting in
your first college rehearsal would understandably create stress, but being put on the spot in this
manner would make it even worse. Joseph felt the glare of a number of graduate students sitting
in the section below him, waiting for him to fail. Unfortunately, the pressure was too much for
him, and he did not play well. “To make a long story short, that solo totally psyched me out. It
was traumatic…traumatic.” In fact, he played so poorly that he was forced to relinquish the
principal horn chair shortly afterward.
That, I would say, was a really serious precipitating trauma for me. I
think it was a deeply rooted influence on the development of this
disorder. An influence, which didn’t really hit me until many years
later…many years later…I was in my late thirties (Appendix E, p. 158).
To make matters worse, he was called into his private teacher’s office where he was excoriated
for having to relinquish the chair.
After that traumatic event, he admitted that the performance anxiety he felt was too
strong for him to continue to major in music. Joseph put the horn away and changed his major to
kinesiology. I asked him why he chose that field. He told me that athletics and horn were his
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main passions. As a high school student he both played basketball and participated in the
orchestra. On a Friday night the basketball team won a tournament in his local town and the next
morning he was playing a performance of a Mahler symphony in a local professional orchestra.
Switching to kinesiology, the science of how the body works, was a natural move for him.
While pursuing his doctoral degree in kinesiology, Joseph eventually found his way back
to playing the horn about ten years later. His private horn teacher from high school was teaching
at another college in the area and playing in the local symphony. There was an opening in the
horn section so his old teacher asked Joseph to take the audition and play with him in the
orchestra.
So I played with him in the orchestra for three years. It was fabulous, and I got
over my nerves. Everything came back. So I really pursued it heavily when I
came out to my current position. I studied with a guy from the Symphony and I
was playing (principal horn) in a second-tier orchestra in the city. And it is going
great, but that’s when my symptoms started to come into play.
(Appendix E, p. 158)
When he was about 39 years of age, Joseph began to notice his first dystonic symptoms. The
levator labii superioris on the right side of his face, shown in Figure 9, began to pull
uncontrollably.
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Figure 9: Levator Labii Superioris, By Uwe Gille - modified from Image: Gray378.png, Public
Domain. Retrieved from
https://en.wikipedia.org/wiki/Levator_labii_superioris#/media/File:Levator_labii_superioris.png
This excess pulling upset the delicate balance of the embouchure, and making it impossible to
play with a stable tone and accuracy.
While Joseph definitely believed that his traumatic events major contributing factors in
the development of his dystonia, he also believed that some of his practice habits at the time, a
result of his perfectionist nature, were also factors. He had been working exceptionally hard on
mastering his low register. “I was hammering…practicing everything in the low register
repetitively.” He was also doing isometric exercises, making muscles work against each other,
tightening the facial muscles as much as possible to build up endurance. In retrospect, he calls
those practices “idiotic,” and served to only exacerbate the problems and “hard-wire the excess
tension.”
Joseph did not know exactly what was happening other than having embouchure stability
problems until a horn student mentioned that she thought he had dystonia. He had never heard of
the condition before and made light of it at first. But after doing some research on it, he found
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that it was a real disorder.
He sought out medical help and was eventually diagnosed with Task Specific
Embouchure Dystonia by Dr. Stephen Frucht in New York City in 2001.
4
At that time,
embouchure dystonia was considered incurable and Mr. Walker was informed that his horn-
playing career was over. “And that was it…horn gone. That part of my identity and life is gone.
And it was huge…really hard.”
Analysis of Precipitating Factors
Psychologically, most musicians who develop focal dystonia display one or all of the
following traits based on the research reviewed for this study: anxiety, depression, obsessive-
compulsive disorder, and perfectionism. Joseph mentioned early on that performance anxiety
was a main factor in his decision to give up playing the horn early in his career. Although
dystonia did not manifest itself at that time, the anxiety created a highly traumatic event that
remained a part of his psyche and likely contributed to the later development of focal dystonia.
Joseph also admitted that he has perfectionist tendencies. The result of which is a mentality that
no level of proficiency is personally acceptable. This drives the player to repeat sections of
music over and over again in hopes that enough repetitions will make the passage perfect
quickly. Unfortunately, this approach usually does not work the way the player hopes, and it can
be detrimental to improvement.
A study done by Duke, Simmons & Cash (2009) found that the amount of practice time
spent on a single piece of music was not a factor in improvement. Rather, efficient strategies for
error correction were far more effective. Similarly, Dr. Adina Mornell, a concert pianist and
music psychologist at the University of Performing Arts in Munich, Germany, reported that only
4
Dr. Frucht is a neurologist at NYU Langone Health Center who treats movement disorders. A trained violinist and
pianist, he has a particular interest in working with those suffering from focal dystonia.
85
a certain amount of repetitions are beneficial before the brain ceases to learn. How many
repetitions that is varies depending on the person, but there is definitely a ‘point of diminishing
returns’ (A. Mornell, personal communication, 2015). Those with perfectionist tendencies have
a difficult time recognizing that point, at which time serious damage can be done. There is a
definite potential for damage with over-repetition.
Dr. Mornell’s findings are supported by the study done with owl monkeys by Byl and
colleagues (1996) reported in Chapter 2.
Rapid, repetitive, highly stereotypic movements applied in a learning context can
actively degrade cortical representations of sensory information guiding fine
motor hand movements…Near-simultaneous, coincident, repetitive inputs to the
skin, muscles, joints, and tendons of the hand may cause the primary sensory
cortex in the brain to lose its ability to differentiate between stimuli received from
various parts of the hand (Byl et al., 1996, p. 508).
Just as with the hand, there are specific areas of the sensorimotor cortex that correlate to
the facial muscles. Although there are no similar MRI results in the current research that show a
reorganization of facial muscle recognition, there is reason to believe that the same thing could
happen to the sensory set that controls the muscles of the face that form the brass player’s
embouchure.
The environment a musician experiences can combine with the above psychological
factors to set the stage for focal dystonia. As a young player, Joseph experienced environments
that were very challenging. Pressure being put on him by a teacher to play an etude perfectly
five times consecutively can create a negative experience, especially for those with performance
anxiety. When he began his collegiate studies, being put in the principal horn position in the top
wind ensemble generated substantial amounts of stress. To make matters worse, there was a
86
conductor who set him up for failure
The result was catastrophic for Joseph, and directly led to his abandoning his first love
for ten years, playing the horn. Even worse, it may have created a serious mental trauma that
potentially put him in a position to develop focal dystonia later in life. When Joseph first
experienced dystonic symptoms, he was in a comfortable position with a good paying job, so he
was not depending on the instrument to make a living. However, there is always some inherent
pressure playing principal horn, which likely combined with the earlier trauma to create a higher
likelihood of developing focal dystonia.
Behavioral factors are the actions taken by players that come from the traditional ways of
training musicians. We are taught that if something does not sound good to do it again, and keep
repeating it until we play it correctly. This basic tenet, along with perfectionism and a strong
desire to improve (Fletcher, 2008), creates more problems for the player. In Joseph’s case, he
became dissatisfied with his low register. To correct it, he began to focus exclusively on that
range of the horn, ignoring the rest. He was, “Hammering…practicing everything in the low
register repetitively.” As has been explained earlier, this type of heavy repetition can be
detrimental to the player. It is important for musicians to not focus on one range or aspect of
playing exclusively as one way of avoiding focal dystonia (J. Farias, personal communication,
July 9-12, 2018).
Joseph was also taxing his delicate facial muscles by doing isometric exercises to
increase his endurance. Altenmüller and Jabusch (2010), Lewis (2017), and Farias (2018) have
all suggested that overuse injuries can be precursors to focal dystonia as other muscles become
engaged to compensate for the injured muscles.
Manifestation of the disorder occurred when Joseph was between 39 and 40 years old.
According to Altenmüller and Jabusch (2010) the mean age of focal dystonia onset is the mid-
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30’s, which would put Joseph’s first experience of symptoms well within the normal age range.
In his case, the pulling of the levator labii superioris did not appear on one specific note, but
generally while playing. His type of focal dystonia, lip pulling, is the most common type of
embouchure dystonia experienced by horn and trumpet players (Fletcher, 2008). Medical
professionals offered no cures, and he was told that he would never play the horn again.
An interesting fact is that those symptoms appeared approximately ten years after he took
up the horn after a long, 10-year layoff. Although few if any studies have been specifically done
on this type of situation, the precipitating factors of injury and overuse might seem to favor the
onset of dystonia when the player is trying to build the embouchure back up after a lengthy
layoff; especially if the player tries to build up endurance too quickly. I believe, as does Joseph,
that the way his focal dystonia manifested itself may be strongly linked to the traumatic events of
his younger days as an aspiring professional hornist.
Recovery Process
The first thing Mr. Walker did after the diagnosis was to again engage his athletic side by
taking a cross-country bicycle trip with his wife, which he described as being very therapeutic.
Upon returning, he resigned his position with the Symphony, but continued to teach horn, which
he says was a positive benefit for him. After taking some time off from the instrument, he
rededicated himself to completely understanding dystonia and trying to fix it. At first he was
trying to figure out how to rehabilitate himself, but it grew into something much larger than that.
A few years later, after doing much research on the disorder, Mr. Walker picked up the
horn again, and began developing some rehabilitation protocols for himself that showed some
promise. While looking in a mirror to get visual feedback on his facial muscles, he was
astonished by the excessive tension observed while even playing what should be fairly easy notes
in the middle range of the instrument, and how that tightness became an overriding sensation
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which consumed all of his thought processes.
One of the techniques for reducing dystonic symptoms that caught his attention is
referred to as sensory tricks, also known as geste antagoniste. The concept behind sensory tricks
is that adding a new sensation, such as touching a part of the body near the dystonic area,
changes the perception in the brain of what is happening physically, thus bypassing the dystonic
‘short circuit’. The technique has been used to help people who suffer from general dystonia,
particularly torticollis. By placing a finger on the check or other part of the face in the direction
that the neck is twisting, some of the muscle contractions release, allowing the dystonic patient
to regain a more normal posture. In musicians, sensory tricks have shown promise in guitarists
who wear a thin glove on their dystonic hand. The sensory input to the brain is changed and the
hand becomes more relaxed and agile (Konczak & Abruzzese, 2013).
With this concept in mind, Joseph noticed that different things happened when he would
buzz on his mouthpiece as opposed to playing on the horn; or putting the mouthpiece in a
stopping mute and buzzing. He believed that the different sensory feedback from those different
situations helped to lessen his dystonic symptoms.
In the ensuing months, he began to experiment with changing his focus to different
sensory inputs while practicing. These included using a mirror to check for extraneous muscle
use, mental imagery of non-dystonic playing, and trying to establish muscle memory from the
non-dystonic notes to the problematic ones. The results were promising and he regained a
substantial amount of facility in his practice sessions during approximately a ten-month period
and was very optimistic about his potential recovery.
Unfortunately, there is a big difference between playing in the practice room and being
able to produce the same results under the pressure of live performance, even in rehearsals.
Although he had made large strides in the practice room, it was difficult for him to replicate that
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type of free playing when he tried to play duets with students or play in the college orchestra. He
believed that anxiety is the root cause of this problem.
Another issue that he mentioned is that he was not patient about his recovery process. As
his symptoms improved, he wanted to be back to normal immediately. Hoping that one morning
he would wake up and all would be back to the way it had been. A student who was dealing with
an embouchure change gave him a bit more realistic view. After much frustration, he and the
student sought out the advice of another horn teacher.
The new teacher used the expression, “Slow is fast.” Reminding the young player that he
had made some major changes in his playing and that patience would be required before he
would see positive results. Joseph took this idea to heart and wondered if it might take even
greater patience for an older player to make those changes as opposed to a younger one. The
premise behind his theory is the concept that neuroplasticity is reduced with age.
Trying to figure out his personal goals was important at that time. He wanted to
eventually play in the orchestra again. Although his practicing was showing great promise, the
obstacle of performance anxiety and the fear of failure were still major obstacles. So much so
that he had to question, “Why?” Why should he put himself through all of this effort for
something so elusive? Ultimately, the love of playing the horn was the answer.
As he attained greater facility in his practicing, Joseph began to play again publicly at his
church. He had attained a level of rehabilitation that allowed him to play simpler music and
hymns, and his performance anxiety seemed to have subsided. He could play again in all keys
within a comfortable range with ease and without the lip tremors.
His playing recovered to the point that he decided to once again try to play the “Concerto
No. 1 for Horn” by Richard Strauss, a cornerstone of the horn repertoire. Immediately the
symptoms returned, a very disheartening result. One of the problems in dystonia recovery is that
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going back to the repertoire that is associated with the disorder has a tendency to bring back all
of the old, dystonic patterns (Paraskevas, 2014).
So, this also is a big factor to me as I think about people who want to
rehabilitate. What’s going to be an acceptable level of recovery for you? Are you
really going to try to be in the orchestra again? Because now all of the old
familiar sensory signals, emotional signals, are there. They’re in you. You’ll
have to overcome them (Appendix E, p. 161).
Analysis of Recovery Factors
As anyone can imagine, Joseph’s psychological state after being diagnosed with focal
dystonia, a debilitating movement disorder for which there was no definite cure, was one of
personal devastation. Having something that is so tied to a person’s identity taken away is
traumatic. Rather than wallow in self-pity, however, Joseph did what he did way back in his
teenage years when he initially gave up playing the horn; he engaged his athletic side. Taking a
cross-country bike trip with his wife was an incredibly therapeutic first response, and created a
mental readiness to take on the task of researching focal dystonia and rehabilitating himself.
His original goal was to return to playing in the orchestra from which he resigned.
Unfortunately, the performance anxiety and fear of failure stayed with him and made it difficult
to play outside of the practice room with the stress of having others hearing what you are doing
either in a lesson or in a performance situation. Perhaps seeking psychological therapy to
address his anxiety could have helped this situation, but he did not pursue that avenue. Because
of the anxiety, Joseph had to once again address his motivation to keep working through what
was a difficult recovery process. Ultimately his love of playing the horn was that primary
motivation.
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Another psychological factor affecting his recovery was the desire to have everything
fixed quickly. Once he saw some improvement, he wanted to wake up the next morning and be
back to his old self. While certainly understandable, it is not reality. It can take a long time for
one’s playing to deteriorate; it will take a long time to recover it (Paraskevas, 2014).
From a behavioral perspective, Joseph realized that some of his old habits, such as
focusing on one area of the instrument and relentlessly working on it at the expense of other
parts of his playing, was not a good approach. He saw that his facial muscles had become so
tense that it was detrimental to what he wanted to achieve. Working with a mirror to see
extraneous muscle movement, using mental imagery, trying to create muscle memory from notes
that had become non-dystonic to those that were dystonic allowed him to see significant
progress.
The work done by Farias has shown that this type of approach can be very effective. He
has seen that the brain can misrepresent what the body is doing, or become blind to the action of
certain muscles. Different factors such as overuse or a traumatic event, such as those experienced
by Joseph in his younger days, can create a cortical shock that creates a block in the neurological
pathways creating ‘blind spots’ (Farias, 2016). Using a mirror helps the brain recognize what the
body is actually doing, allowing it to reconcile and reorganize these movements.
The environment that Joseph was in after the diagnosis experienced one significant
change. While he was still in the same kinesiology position and teaching horn students, he was
no longer playing in the orchestra. Unlike those who make a living playing their instruments,
Joseph had the luxury of being able to stop playing publicly without it significantly affecting his
income. Leaving the orchestra allowed him to work on the recovery process without the pressure
of performing in rehearsals and concerts. The results were that he was able to make significant
progress in regaining playing facility in about ten months. Stepping away from the performing
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stage is a very important part of the recovery process because the pressure of performing will
cause the player to revert back to old habits, essentially erasing whatever progress may have
been made in the practice room (Paraskevas, 2014; Fletcher, 2008).
During his recovery process, Joseph experienced both epiphanies and an unfortunate
tipping point. While working on his initial retraining protocols, he found that playing on just the
mouthpiece, or playing on the mouthpiece stuck into a stopping mute did not illicit dystonic
symptoms. This is corollary to the sensory trick or geste antagoniste where a new sensation is
added by touch on or near the affected muscle(s) to change the sensory perception feedback loop
in the brain. In his case, he removed one of the sensations by removing the horn itself from the
loop. This type of approach is often referred to as ‘removing a triggering factor’, but operates on
the same principal as the sensory trick (J. Farias, embouchure dystonia seminar, June 9-12,
2018).
As an aside, I will note that while attending Farias’ embouchure dystonia seminar in July
of 2018, I watched him use this approach with a flutist. He took away pieces of the instrument
until the dystonic movement stopped; even as far as having the player hold the head joint away
from the lips until the tremor stopped. He would then move it closer until the tremor started, and
pull it away again. Each time he was able to get it closer without a tremor beginning until, in
time, the player was able to blow across the tone hole without a tremor. Eventually the
instrument was reintroduced to the head joint and the same process ensued. Kagarice employs a
similar technique in her retraining protocol where she glides the mouthpiece around the player’s
lips until the dystonic response fades away (Fletcher, 2008).
Unfortunately a tipping point occurred later that sent Joseph back to square one and
discouraged him from further recovery attempts. After a long time of retraining and dealing with
his performance anxiety, he had regained a substantial amount of his technique back and had
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started playing again publicly. He could play hymn tunes and other relatively simple music in a
performance situation without dystonic symptoms. The confidence had come back to the point
that he wanted to play one of the great concertos of the horn repertoire, the Richard Strauss “First
Concerto for Horn” again. That music triggered all of the old symptoms and he couldn’t play at
all. His impatience to return to normal appeared to negate all of the progress that he had made.
Conclusion
Although Joseph was not ultimately able to return to performing, a great deal can be
learned by his story of the emergence of focal dystonia and near-recovery. His story strongly the
support the findings correlating to research question number 5: In what ways do the three case
studies relate to the current research? The current research has found a number of psychological
traits that most focal dystonia sufferers have in common: obsessive-compulsive disorder,
perfectionism, anxiety, and depression (Altenmüller, 2010).
Joseph’s triggering factors of environment, behavior, and psychology all appeared to be
evident in his development of focal dystonia. The environment that Joseph experienced during
his formative years only served to create even higher levels of psychological stress. For Joseph,
perfectionism and anxiety were major psychological factors in his dystonia experience
Knowledge of these psychological factors is important for studio teachers and ensemble
directors. Those who teach music, whether the students are aspiring professionals or hobbyists,
can do great damage if they use tactics such as high pressure or humiliation to push their students
to improve. It is also important for the player experiencing focal dystonia to address their
psychological conditions when trying to recover. If those conditions are not managed in a
healthy way, there is less potential for recovery.
Another common trait among those experiencing focal dystonia is that they were ‘natural
players’ who improve quickly without a tremendous amount of effort, just like Joseph. This is
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not to imply that all “natural players” will become dystonic. But a teacher who is aware of this
trait in a student can be more attentive to any symptoms that might start to show, and redirect the
student to healthier playing.
Joseph’s case has also demonstrated that over-repetition and obsession on one area of a
person’s playing can be highly detrimental. His compulsion to keep endlessly practicing in the
low register of the instrument was a major factor in creating and exacerbating his dystonic
symptoms. Players need to be smart about how much time and repetitions they give to any one
area, and move on to a different part of their playing before serious damage is done.
To have a better chance at rehabilitation, a player needs to reassess his or her approach to
the instrument. The primary recovery factors that Joseph showed were environmental and
epiphanies/tipping points. He had left the orchestra, and had discovered sensory tricks, which
began his recovery process. Joseph had rebuilt a substantial amount of his playing by using
visual feedback in a mirror, sensory tricks, and muscle memory from non-dystonic notes to the
dystonic ones. All of these methods proved to be effective for him. Unfortunately, he did not
substantially address his psychological factors or make behavioral changes, and that ultimately
led to the tipping point of his symptoms returning instantly after a ten-month period of progress.
When working on rehabilitation, patience is very important. Quick fixes do not exist.
Once a player finds techniques that are effective, he or she must be willing to stick to the
rehabilitation program for a substantial amount of time and not try to cheat the process. With the
knowledge that has been gleaned from the literature, it appears that if Joseph had possessed more
patience and not tried to make a major technical jump from playing hymns to playing Strauss, he
may have had a better chance at a full recovery.
“Let me be clear. I’ve given up horn playing…definitely,” he said to me when I asked
what keeps him motivated to continue his work. But his motivation to continue comes from
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several sources: pedagogy, describing dystonia, and potential interventions. According to
Joseph, the research is “cutting edge, brand new, has never been done before.” They are able to
go just about any direction with their research that they desire.
He would like to be able to more accurately describe what is happening in dystonic
players. Helping brass players play more efficiently. Being able to show the differences, both
externally and internally, between dystonic and non-dystonic players in the hope of retraining
those who experience the disorder. The MRI project has taught him things about brass pedagogy
that were unknown, and are very meaningful. He is hopeful that some of the feedback studies
will yield results that will help both rehabilitate and prevent dystonia.
Finally, I would be remiss if I did not mention that Joseph is a very spiritual person who
is a devout Christian. He looks at his experience with dystonia and his subsequent work in
dystonia research as an opportunity from a higher power guiding him. Taking a situation that
was an immense tragedy for him, and turning it into a great gift.
Although he said that he has given up playing the horn, I believe his love for the
instrument is too deep to totally quit. He shared with me his desire to be a subject in the
rehabilitation protocol study that he and a colleague are planning for spring of 2019 is evidence
of his desire to still play. He said that he has no aspirations to play in an ensemble anymore, but
would love to be able to return to making beautiful sounds on the horn again.
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Chapter 6 - My Experience
Introduction
This chapter will present an autoethnographic case study of my own experience with
focal dystonia. Similarly, to the two previous case studies, I will give a brief personal
background. Then I will discuss the precipitating factors that led to my focal dystonia, and my
attempts at recovery, with each section being followed by an analysis based on the coding. The
chapter will conclude with a discussion related to research question 4: How does my personal
experience with focal dystonia add meaning to the discussion?
Background
After completing my Bachelor of Science degree in Music Education at Penn State
University, I moved to Long Beach, California to pursue a Master of Music degree in trombone
performance. During the second year of my master’s degree, I began to develop the first
symptoms of focal dystonia. At the time I did not know why I was having these problems and
had never heard of focal dystonia. I completed my degree, and took a one-semester sabbatical
replacement assignment as the low brass instructor at Mansfield University in Pennsylvania. The
dystonic symptoms continued to worsen and eventually I ceased playing the trombone
professionally. I began my public school teaching career at the same time, and was accepted into
the Los Angeles Master Chorale. After twelve years of teaching I left my position to pursue my
doctoral studies. My recent scholarship on this movement disorder has inspired me to begin a
rehabilitation process based on the information contained in this study.
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Personal Story with Dystonia
Precipitating Factors
I can still remember it to this day. I was sitting in the back of the orchestra playing
Mahler’s “Symphony #1”. It was in the fall of my second year as a Master of Music student in
Trombone Performance at California State University, Long Beach. It was a low brass section
that I had played with on many occasions and we seemed to get along and respect each other. I
finished playing one of the octave unison sections with the tuba in the second movement and felt
really good about it. At that moment the second trombone player turned to me and said, “Try
playing it in tune next time.”
I was shocked by this comment. I had never been accused of having bad intonation
before. I made significant progress in my first year as a graduate student and played the best jury
of my life that previous spring. My goal of being a top-flight player seemed to be on track after
a lot of hard work. Shortly after that, however, I began to doubt everything that I did. I am
certainly my own worst critic, but had I just been fooling myself all these years? From that
incident forward, the doubts grew. Entrances were shaky and wrought with fear, creating a
snowball effect of tension that began to create instability in my jaw, although I perceived the
problem to be in my lips at the time.
The tremor in my jaw is a result of an imbalance in the muscles that manipulate the
mandible. There are a number of muscles that are involved in the movement of the jaw, the most
powerful of those being the masseter, which is the primary muscle that closes the jaw along with
the temporalis and medial pterygoid. These muscles are shown in Figure 10.
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Figure 10: Muscles of the Head, Face, and Neck, By Henry Vandyke Carter - Henry Gray (1918)
Anatomy of the Human Body
Gray's Anatomy, Plate 378, Public Domain. Retrieved from
https://en.wikipedia.org/wiki/Facial_muscles#/media/File:Gray378.png
The muscles that open the jaw are the digastric muscle, mylohyoid muscle, and the lateral
pterygoid. Playing a brass instrument necessitates that the jaw be able to make very small
adjustments depending on the range of the notes being played, and to hold those positions
securely. This requires a very fine balance between the six different antagonist muscles that are
not of equal strength.
The dystonic symptoms began on just one note, C# in the bass staff. Naturally, my
response was to spend extra time practicing, particularly on that note. But the instability and
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insecurity only worsened over time. The D a half step above it became unstable, as did the C
and B below. Attacks in this range became inaccurate and I could feel the tension increasing as I
attempted to unsuccessfully produce quality attacks and sound. I had no idea what was
happening. Focal dystonia was not in my lexicon and I certainly had no intention of discussing
my problems with anyone around me for fear of being mocked and ridiculed.
The overall environment of the music department at CSULB at that time was very
different from the one that I had experienced during my undergraduate years at Penn State
University. The trombone studio at Penn State was, and still is, run with a sense of family.
While people certainly had their disagreements, the competition between players was healthy,
and we all had a sense of working together to help each other become better players and
musicians. At CSULB there was very little of that familial feeling. For the most part, everyone
was out for himself or herself, and denigrating other players was treated as a sport and
considered normal behavior.
Going to rehearsals and playing concerts became more and more stressful. That fall we
played a lot of music with exposed parts for bass trombone, including Pictures at an Exhibition.
I can recall the fear I felt every time we played the Gnomus movement. It has both an exposed
solo line for the bass trombone and a long unison octave Cb, one of the notes I had the most
trouble playing, with the tuba where the entire orchestra drops out and it was only the two of us.
I had nowhere to hide and I never played it very well.
Along with orchestra and wind ensemble, I was playing in a “Tower of Power” style rock
band where each player had a microphone. As if that wasn’t scary enough for a player struggling
with his or her embouchure, the director would go down the line to have each person play a
tuning note to check the microphone levels. What terror! Everyone in the group, and in the
audience, would hear my problem. As my note quivered, he would sarcastically lampoon my
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inability to hold the note steady.
My lips grew tighter in an attempt to control the shaking, making notes in the low register
even worse. During an audition for the jazz ensembles at the school, I was asked to sight-read a
highly technical bass trombone part that was mostly below the staff by that same ensemble
director. Needless to say, I completely fell apart to the point where I simply gave up and said, “I
can’t do it.” He and the wind ensemble director chuckled at my failure. I believe he knew I
probably would not be able to play it and wanted to make a fool of me in front of another faculty
member.
As I began to prepare my graduate recital, I tried to ignore it as best I could and kept
working as hard as possible. One way or another, I was going to ‘muscle’ through this. When I
would go into my lessons, sometimes my jaw would shake. My teacher would give a confused
look, but never addressed it. I was able to play well enough at the time to successfully complete
my graduate recital and finish my master’s degree in trombone performance, but the dystonia
only grew worse in the ensuing months.
After finishing my degree, I became the director of the Moravian Trombone Choir of
Downey, CA; a position I held for 13 years. A few years later I was appointed as director of the
chancel choir. I would try to play for holidays and other events, but it was always terrifying and
not particularly successful to my ears. Compounding the problem was that my teacher from my
master’s degree was a member there, and I always felt like I had been a disappointment to him.
He had no idea what to do with my dystonia and I believe that he had essentially given up on me.
While I was at the Moravian Church, another traumatic event in my trombone career
occurred. One Christmas season the choir was presenting several movements of Messiah. I
volunteered to sing some of the bass recitatives and solos. After the performance, my teacher
from Long Beach said to me, “Shabe, you missed your calling. You’re a better singer than you
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ever were a trombone player.” It felt like a backhanded compliment. I was devastated.
The following spring, I was offered an opportunity to be the low brass professor at
Mansfield University in Pennsylvania for that semester as a sabbatical replacement. Because of
my embouchure issues, I did not feel particularly confident in my qualifications to take this
position. But my teacher from Penn State had recommended me for the job and, at that time, I
had wanted to be a studio teacher, so I went ahead and took the position. Most of the students
were nice, but there was one tuba student who refused to study with me because he felt he should
have been offered the job, even though he had not finished his degree.
I tried my best to be confident and hide my issues from the students, but inside I felt like
a complete charlatan. In the last week of that assignment, I played in a brass trio with that tuba
student and the horn professor on a faculty recital. I was terrified in the rehearsals, but I
survived. During the performance, I felt great at the beginning: my sound was ringing in the
hall. But I could feel my embouchure tightening. By the end of the piece, I was barely able to
get sound out of the instrument and my whole body was bound in knots. Although nobody said
anything, I felt completely humiliated.
After returning to Southern California, I began to ask myself if it was really worth it to
keep practicing in an attempt to correct my embouchure problems. I was terrified every time I
picked up the instrument, even only to practice in a place where nobody would be able to hear
me. By this point playing the trombone felt completely foreign to me; my hands were not
comfortable holding it and my embouchure seemed unfamiliar with the feel of the mouthpiece.
Playing had ceased to be enjoyable anymore as I wrestled with trying to control my tremors, and
I certainly was not making a lot of money doing it. I finally decided that it was not worth the
immense stress that I felt to keep playing publicly, and all but ceased performing on the
instrument. I had a degree in Music Education and a valid teaching credential, so I was able to
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get a public-school teaching job to pay the bills. But it still was a devastating turn of events to
have to give up something that I meant so much to me.
A year later I went back to Central Pennsylvania to be part of a recording session for the
Penn State Trombone Choir. All of the current students and many of the alumni had gathered to
make a recording of the big works that had been part of the history of the group. I practiced hard
for it and was able to get through the sessions adequately. My teacher from Penn State said I
played beautifully, but I thought I sounded awful. It was at this gathering that I first heard the
term “focal dystonia” and that it was a career ending disorder.
I was too frightened to seek help. I did not want to go see a doctor just to have it
confirmed that I would never be able to play again, and I was too embarrassed by the quality of
my playing to go get lessons from other teachers. I thought any teacher I went to would wonder
how on earth I had a degree in trombone performance. The potential humiliation was more than
I could bear.
Analysis of Precipitating Factors
After thorough study of the cases of George Jones and Joseph Walker and the coding that
was created to analyze their experience, I can see the substantial effect the musical environment
that was around me had on my psyche and ultimately my development of focal dystonia. The
atmosphere around the music school during my time as a master’s student was not a healthy one
conducive to improvement. The general attitude of a number of players was to belittle as many
people as possible. The result was an air of fear that pervaded rehearsals of the wind ensemble
and orchestra.
I believe that the other environments that I experienced shortly after graduating served to
make the dystonic symptoms even worse. Continuing to be around my former trombone teacher
for several years after served to perpetuate the sense of unfulfilled potential that I felt when I was
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around him. My semester as a studio teacher did not prove to be a positive one, either. I was in
a position of authority over a number of college music majors and I could not play better than
some of them because of my dystonia. All of the time I worked exceptionally hard to fix my
shortcomings, only to have them get worse.
Because I only had the ingrained concepts of endless repetition, my behavioral approach
to correcting my dystonia also exacerbated the problem. I wanted to improve my facility in the
low range of the bass trombone. As an undergraduate, I was always in awe of the ability of John,
one of our graduate bass trombone students. He had an incredible high and low range and
tremendous technique, particularly in the low register.
During my second year as a graduate student, a new undergraduate entered the program
with a similar ability to play with great agility in the low register. I wanted to correct this
shortcoming in my playing and gave it almost exclusive attention. Similarly, when my dystonic
symptoms began, I gave almost 100% of my practice attention to the unstable notes. I rarely
played any actual music anymore, mostly long tones, scales, and arpeggios centered around the
dystonic notes, which proved to only spread and intensify the instability.
Both the environmental and behavioral factors are important in the advancement of my
dystonic symptoms. I believe, however, that the factor that is of the greatest magnitude, and is
inextricably intertwined with the environmental and behavioral factors is the psychological
component. I simply was not psychologically capable of handling the stress that was created by
the environments that I was facing. Both Fletcher (2008) and Farias (2016) found that
psychological trauma is common in musicians who develop focal dystonia. Because of my
psychological limitations, events such as the comment made by a colleague in the orchestra
rehearsal or being mocked during the sound check for not being able to hold a stable note
became highly traumatic experiences that had a substantial negative effect on my psyche.
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As soon as I became a graduate student, I felt that I needed to set the same type of
example that John had when I was an undergraduate. I had put tremendous pressure on myself to
at least be as good as I remembered him being. When I gave my first jury as a graduate student
and did not play as well as I wanted to, I berated myself for not living up to that standard. I
remember saying to myself, “John never sounded that bad.” He was one of my gold standards of
what a great player should sound like. Anxiety and perfectionism, both of which I experienced,
were cited by Altenmüller and Jabusch (2010) as being pervasive in dystonic musicians before
the onset of symptoms. Healthy musicians did not display this pattern. They believe anxiety and
perfectionism combine to create a higher stress environment leading to the onset of focal
dystonia.
Recovery
From a trombone standpoint, I essentially stayed in this state of limbo for many years. I
would decide to get a practice routine going and I feel like I had made a little progress. But then,
either for work related or personal reasons, I would stop practicing for a time and felt that I had
returned to square one.
Although I no longer was playing the trombone professionally, from a music
performance standpoint, I did have other outlets. While I was finishing my masters, I was sitting
in the back of the orchestra one day when we were rehearsing Beethoven’s “Symphony #9.”
Without warning the director, I began to sing the baritone recitative in the fourth movement.
When we got to the end, the whole orchestra looked back at me and cheered. My new career as a
vocalist had begun.
The orchestra director was, at the same time, a church choir director and began hiring me
as an extra singer for some larger works he wanted to do. His wife was also directing a church
choir in Santa Monica, CA, and I eventually won the audition for the bass soloist position. I
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began taking auditions for various ensembles and was accepted into the Los Angeles Chamber
Singers and the Los Angeles Master Chorale. I have continued to be active as a freelance
vocalist, including some movie studio recording, and I’m beginning my fifth year as the music
director of a Lutheran church in Pasadena, CA.
When I began my doctoral studies in Music Teaching and Learning at USC, within the
first week I decided that focal dystonia would be my dissertation topic with the potential to help
myself, and others. After conducting the review of literature, I read about a trumpeter in
England that had a similar manifestation of focal dystonia to mine: jaw tremors (Satoh, Narita, &
Tomimoto, 2011). To mitigate the symptoms, she had dental splints made to help hold her jaw
in place. After two months of using the dental splints every time she played the trumpet her
symptoms began to disappear, and they completely ceased after six months. Over the next few
months she slowly decreased her use of the splints and eventually was able to play without them
without any recurrence of dystonic symptoms.
Naturally I was curious to attempt this type of intervention. In the Satoh et. al. study,
they first had the trumpeter put cotton between her teeth to see if there would be any change in
the tremors. I did the same thing and, “Oh my God!” the tremors were gone. This was an
epiphany. There was a way to make the tremors go away. I then made my own splints out of an
athletic mouth guard. I hadn’t been this excited about being able to play again in years. I started
practicing and was able to get a good sound and better technique than I could remember having
in a long time. Only a few weeks later, I joined a local community orchestra to get my feet wet
again. The other players were welcoming and positive; a big change from my master’s
experience, and it was enjoyable and confidence building to have some success again.
Over time, unfortunately, the tremors began again, even when using the dental splints.
They helped to stabilize the embouchure, but my jaw was not as steady anymore, and my playing
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seemed to be slowly deteriorating. I came to the conclusion that the splints had only been a
stopgap measure. I was not getting the same long-term results that the British trumpeter had
experienced, so I decided that I needed to make a change in my approach. I tried to practice
without them, and the jaw tremors were so bad that I could hardly get out a note. It was very
frustrating. I didn’t know what more I could do.
Concurrently, I was conducting my interviews for the two previous case studies. The
names Fabra and Farias were mentioned as two cutting edge practitioners who have had success
in helping musicians with focal dystonia. Mr. Fabra is a trombonist in Madrid who overcame
dystonia on his own. I discovered a number of interviews on YouTube that anyone can watch.
He focuses on allowing the musician to release their fear, ignoring the dystonic symptoms and
allowing the brain to return to a calm state. By embracing their emotions, the player can
eventually diminish the perceived psychological threat that is causing distress. Ultimately, the
calmed brain can allow the player to regain their old technique (Scragg, 2009).
Dr. Joachin Farias is a musician and neurologist living in Toronto, Canada who has
helped those with musicians and general dystonia. After thoroughly reading material on his
website and reading some of the testimonials of prominent players that he has helped, I contacted
Dr. Farias to see if he was taking clients and if it would be possible to work with him. His
assistant promptly returned my email informing me that he did a four-day workshop every year
for musicians suffering from embouchure dystonia. There was one spot left and it started in two
weeks.
I was not so sure if I wanted to do this on such short notice, or if I was even brave
enough to put myself in front of nine other people. Plus, my wife and I were leaving on a trip to
Germany and France and would only be returning two days before I would have to leave for the
workshop. Fortunately, my wife convinced me that I should go, and I booked my flight and
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accommodations for Toronto.
It was an amazing, uplifting educational experience. There were people from all walks of
life, including some prominent professionals, looking for help. The first thing he required all of
us to do was share our stories: who we were and how our dystonia had manifested itself. Then
all of us had to play in front of everyone. There were a wide variety of dystonic movements
displayed, some worse than others, but everyone seemed equally terrified at first regardless of
how bad their symptoms were. It was interesting to observe that nobody played a note the first
day until they had to, but by the last day, everyone was comfortable enough to warm up in the
room before the class started.
Dr. Farias is a strong believer in neuroplasticity. His work with general dystonia patients
as well as musicians has helped him develop a number of different facial exercises designed to,
as he explains it, “perform CPR on the hypotonic muscles.” By the end of the four-day
workshop, all of the participants showed marked improvement in their dystonic symptoms.
I returned home with a new optimism that I could improve and some new tools to work
with. To this point, only a few weeks after, progress is slow and arduous, and some days are
better than others. It is extremely frustrating that I cannot seem to pick up where I left off the
previous day, but I am seeing slight improvement with each practice session. Dr. Farias believes
that I can eventually recover if I stick with the techniques that I have learned. It will take time
and patience.
Analysis of Recovery Factors
My first experience with a potential solution was the use of dental splints. The
introduction of the splints between my teeth helped to stabilize the jaw, but the alleviating effect
was the sensory trick. By inserting the splints, it changed the sensation in my mouth,
interrupting the dystonic feedback loop proposed by Altenmüller (2004). Sensory tricks have
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proven to be very effective in moderating various types of dystonias (Loyola, Camargos, Maia,
& Cardozo 2013). But after some time, the tremors began to return, forcing me to bite down on
the splints to stabilize the shaking. That experience—combined with the fact that the low
register notes require a more open jaw position where the splints would not have a steadying
effect—caused the realization that they were not a long-term solution and I would need to find
new approaches to recovery.
The use of the dental splints did provide the opportunity for some psychological progress
to take place, however. Being able to play initially with a stable tone for the first time in many
years, I was able to enjoy playing in an ensemble again when I joined the community orchestra.
Playing with friendly, supportive people in a low stress environment allowed me to play without
the kind of debilitating fear that I had faced previously.
A change of environment has also given me the opportunity to move past the events of
the previous number of years. Perhaps most importantly was not working at the Moravian
Church anymore. Because my teacher from my masters brought me there initially and was such
a major figure in that environment, it probably kept those memories in the front of my
consciousness. Even after he had left the church and I was there for another six years without
him, his presence was always felt. Having moved to a different job, I feel the psychological
baggage from my past was, at least in part, left behind. I will also candidly admit that returning
to graduate school for a DMA and now teaching at a university where there is a positive
atmosphere has improved my psychological condition. It has enabling me to approach the
instrument with a clearer mind.
The information that I have collected has changed my behavioral approach to playing the
instrument. The Farias Neuroplasticity Seminar, along with the research from this dissertation,
showed me that doing excessive repetitions is not beneficial and can actually be destructive. I
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now make it a priority to not spend too much time on one area of the instrument or even one
etude. To do this requires that I alter my psychology of perfectionism and anxiety. Depression
runs in my family, although I was not aware of it at the time. And my experience with focal
dystonia only exacerbated my condition. I wish I had sought help sooner, but I had no idea what
my options were. During these years, I have been in therapy on and off for depression and
anxiety and I take medication for treatment. It certainly has helped me in general, and I believe
that it has helped put me in a better state of mind for my attempt at recovery
Meaning for This Study
As a musician who has suffered from focal dystonia for a long time, my experience
provides a connection to the two musicians I interviewed. As I spoke with them and transcribed
the interviews, I was able to have a keen sense of their experience. I can tell their stories from a
perspective that a healthy musician cannot possibly have. It also allows me to compare the
strategies used by each person along with my own.
As I describe my circumstances, I draw a number of parallels to the previous case studies.
Patterns emerge that are supported by the current research and the stories of Mr. George Jones
and Dr. Joseph Walker. Similar to Joseph, I had experienced some intensely embarrassing
moments as a player that ended up being very traumatic. Particularly, they happened when I was
putting the most stress on myself to live up to a standard. I am sure that most musicians have
embarrassing moments at one time or another, but I was not in a place psychologically to handle
them properly. Much like Joseph, I wanted everything I did to be perfect and did not react well
to perceived failure with the proper perspective.
Similar to George’s story, my playing problems occurred at the same time there was a
particularly large amount of pressure in my life. I was beginning to prepare a graduate recital,
which required a recital approval jury, and write a masters thesis. There was also the uncertainty
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of what I was going to do after I graduated. Would I stay in Southern California and try to make
a living, or would I pack up and return to the east coast? My personal life was not going well,
either.
My experience as a studio teacher at Mansfield University has some parallels to George’s
experience at the conservatory. In his situation, the highly competitive world of a major
conservatory was uncomfortable for him. To make the situation worse, being the new studio
instructor and beginning to display embouchure problems will cause a lack of respect among
those highly competitive students. For me there was a perceived lack of respect from a few
students, but not all of them. Nonetheless, I certainly felt out of place because of my dystonia. It
is very difficult to get better when you do not feel that the people around you respect you and
what you are trying to overcome.
Much like George, I seriously considered changing careers after the dystonia prevented
me from playing publicly. After my semester at Mansfield I realized that I did not want to be a
studio teacher, not to mention that I could not play well enough to earn a position teaching
trombone. Eventually I went to a career counselor to find out what I might consider pursuing.
Like George, deep down I felt that I was not ready to give up music as my career. Shortly after
that I was offered the public-school job that I stayed with for twelve years. Fortunately, like
Joseph, I did not have to play to make a living.
While my dedicated recovery process is still only a few weeks old, I am seeing that the
techniques that I learned in the Farias Neuroplasticity Workshop can be effective. Much like
George’s return to “neutral” and allowing his body to find its own way, the Farias techniques do
a very similar thing: allowing the brain to reactivate certain muscles that have gone dormant and
modulating out the hypertonic muscles. I will continue to apply these techniques and work to
create my own path to return to playing my instrument.
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Chapter 7: Conclusions and Implications
Conclusions
The current research on focal dystonia in musicians suggests a large set of factors that
appear to put people at risk of developing the disorder. While the purpose of the study was to
use multiple case studies to shed light on techniques for recovery, it has become clear that an
essential part of the recovery process for any individual is to carefully examine their precipitating
factors. For those who have recovered, and those who work to help others recover, this is a vital
step toward rehabilitation.
In seeking the answers to the research questions posed, the case studies have shown that a
number of commonalities exist which support current work. These commonalities parallel the
codes that emerged from analysis of the interviews and the autoethnography. Central among
these are the psychological issues of anxiety, obsessive-compulsive disorder, perfectionism, and
psychological trauma.
Fletcher (2008) and Altenmüller (2004) noted perfectionism, obsessive-compulsive
disorder, and anxiety in their studies. Joseph admitted to having highly perfectionist tendencies
and performance anxiety, while George also stated that he was somewhat obsessive-compulsive
along with his perfectionism. In both cases, when their symptoms first began, they focused on
the problem and worked even harder to fix it, only to have the dystonia become worse. I can
also corroborate having similar personality traits that led to the same results.
Farias (2018) has a different opinion on the matter of obsessive-compulsive disorder.
The topic came up during the workshop that I attended and he expressed his belief that OCD was
not a cause of focal dystonia, but actually a result of it. His theory is that focal dystonia usually
begins on just one or two notes. When this happens, the player becomes obsessed with fixing
that note at the expense of everything else in his or her playing. It is an interesting, “Which
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came first, the Chicken or the egg?” scenario. I believe one could argue it from either position.
Typically, the obsessive-compulsive musician will over-practice, which creates a greater
risk of injury. Neunecker (2017) and White (2017) noted injuries, particularly to the lips, as
having precipitated their dystonic symptoms. George mentioned suffering lip damage right
before going on a recital tour as possibly contributing to his problems. Joseph admits that he was
aggressively over-practicing in the low register. In my own case, I was playing and practicing
for many hours a day in a very inefficient way, particularly when I was preparing for my
graduate recital. I was playing through my program several times per day, often without
warming up. My philosophy for doing this was to build up more endurance than I would
possibly need to get through the recital. There is strong reason to believe that I injured my
embouchure doing this.
The result of an embouchure injury is that other muscles may begin to compensate for the
injured muscles, creating an imbalance in the embouchure that creates more tension, and
ultimately causes it to not function properly. In addition, Farias believes that once this
compensation occurs, the brain no longer perceives the injured muscle as being there and
essentially shuts it down.
Psychological trauma has been reported as a major factor in development of focal
dystonia (Iltis, 2009, 2011). Psychological trauma and fear are not just behavioral traits; they
can affect the chemistry of the brain, exacerbating dystonic movements. Altenmüller’s feedback
loop theory (2004) suggested that the hormone/neurotransmitter norepinephrine that is released
when a person is under stress causes a misfire in the motor cortex, which creates even higher
anxiety. More norepinephrine is released and the sensorimotor system spirals out of control.
With this in mind, being able to reduce anxiety in a player is an important part of recovery.
Medication can help, but psychological treatment is also highly recommended.
113
Triggering factors also are important to observe: environmental factors that affect the
musician’s psychological condition such as stress caused by a change in job, family status, and
injuries. George had just taken a new job at the conservatory, was recording a solo CD, and his
wife had just had a child. Joseph’s undergraduate experience of being set up for failure by the
wind ensemble director had occurred many years before his dystonic symptoms emerged, but it
shows how profound those experiences can be that they still affect a player many years later.
Certain behavioral traits, such as over repetition, can be related to the psychological
factors of obsessive-compulsive disorder and perfectionism. But they are also taught to the
affected musician, often from a previous teacher. These behaviors have shown to contribute to
the onset and exacerbation of focal dystonia. Both George and Joseph, and myself, worked
tirelessly at improvement, to the point of being obsessive and engaging in over-repetition; a trait
that not only helped to bring on the dystonic symptoms, but also to exacerbate them.
Focal dystonia in the embouchure can manifest itself in several ways, each of which
requires a bit of a different approach in the recovery process. In George’s case, he had “lip
lock.” For him, starting at no tension and allowing his body to add just enough to create a sound
proved to be the most effective method. In Joseph’s case, he had a tremor that pulled at the
upper right hand side of his embouchure. Various relaxation techniques showed promise, but he
likely tried to attempt playing difficult music too soon in his recovery process. Going past his
abilities at that time combined with the long held psychological demons associated with the
“Strauss Horn Concerto #1” caused his recovery to collapse. It is possible that his techniques
combined with some of the neuroplastic training exercises employed by Farias might have given
him better results.
To have a chance at recovery, the research and cases studies have shown that it is
important to address the factors of environment, behavior, and psychology. Without making
114
changes in these elements of a musician’s make up, it appears unlikely that improvement will
take place.
In George’s case, leaving the conservatory (environment) and approaching the playing of
his instrument in a new way (behavior) was an essential part of his recovery. Joseph did
experience a slight change in his environment, leaving the orchestra, but did not make a
substantial change in his behavior as it pertained to the approach of playing the instrument.
Along with his trying to play old repertoire that he was not ready for, the old habits contributed
to his relapse.
Environmental and behavioral factors are very important in recovery, but the
psychological factors seem to be the most important. To this point, the most successful therapies
for embouchure dystonia have focused on psychological changes. Cutting edge practitioners
such as Farias and Fabra have discovered that a player’s psychological condition is of prime
importance in treating focal dystonia.
Fabra (2009), whose therapy focuses almost entirely on releasing the trauma and
perceived threat, and the work of Farias (2016), have collectively shown that addressing personal
trauma is essential to recovery. In their experience, if the player does not process the trauma, the
brain will remain blocked and recovery will not be attainable. The research by Fletcher (2008),
and Paraskevas (2013), supported the findings of Fabra and Farias regarding psychological
trauma. It follows that the psychological elements that originally produced dystonia would need
to be changed if a player is going to have a chance at rehabilitation.
In the case of George Jones, he sought out psychological help, both from a psychiatrist
and from an EMDR specialist. While he did not relate to me any specifics about what was
contained in it, his statement about emptying his, “emotional garbage can,” being indispensable
for his recovery supports the current research. Although he did not seek psychological help,
115
Joseph Walker does believe that psychology is an important factor and spoke of several
traumatic experiences in his growth as a musician that he is convinced were factors in his
development of dystonia. My personal experience with psychological trauma, as explained in
the previous chapter, also lends credence to the importance of addressing psychological factors
in dystonia recovery.
In some ways, the newer approaches to treating focal dystonia have come full-circle. In
the early twentieth-century, dystonia was deemed to be a psychological problem rather than
neurological. Over time the medical community began to define it strictly as a neurological
condition. In recent years, most of the research has focused specifically on neurology. With the
help of EEG and MRI technology, neurological maladaptations within the brain of some dystonic
players can be seen. The experiments on monkeys conducted by Byl and colleagues (1996) have
shown that excessive repetition can lead to these types of maladaptations. But, as Farias claims,
we cannot know if it was just the repetitions or the repetitions combined with other factors such
as psychological stress that leads to the changes within the brain. Psychology has now returned
as a primary factor in the treatment of focal dystonia.
Perhaps one of the more interesting concepts in dystonia recovery is the theory that the
brain does not accurately perceive the movements of the body. In my discussion with George,
body mapping was one of the exercises that helped him create a higher kinesthetic awareness.
The article by Klein (2017) suggested that the brain has an inaccurate picture of what the body is
doing. Farias made a similar assertion that the brain is not aware of some of the muscle action or
inaction that is going on in the body. To remedy this disconnect between the brain and body,
close observation of the body’s movements using body mapping or Feldenkrais movement
therapy could be highly beneficial.
116
Tangential to body mapping, reactivating the hypotonic muscle(s) is a central premise
espoused by Farias in his focal dystonia recovery seminar. He suggested that this could be done
by various facial exercises using a mirror to help the brain recognize them again. Once the
hypotonic muscle begins to work, eventually balance will be restored with the antagonist
hypertonic muscle and the muscle tremors will eventually fade out.
Implications for Further Research
Embouchure dystonia research is still in its infancy. The neurological research being
done by Altenmüller and Iltis (years) is important for defining what dystonia truly is from a
neurological perspective. The more promising aspect of the MRI Project is being able to see
what is physically happening inside of a dystonic player, compared to a non-dystonic player.
Unfortunately, this type of research cannot show how the problem developed in the first
place. It is limited by only being able to see the dystonic movements of players who are in
relatively advanced states. Perhaps it would be useful if MRI research could be done on players
that are experiencing the early symptoms. That may be a difficult task as most players only
discover that they are experiencing focal dystonia, or seek help, when the symptoms have
become more advanced.
Psychology and behavioral changes appear to offer fertile ground for further research.
All three case studies presented show the significant role that the subject’s mental state played in
the manifestation and exacerbation of focal dystonia. Nagel explained in a review of literature
related to performance anxiety:
Threats to bodily and emotional integrity have significant and idiosyncratic
meaning for each individual. Psychological factors potentially confound the
presentation and/or treatment of medical conditions. Conversely, emotional
problems can exacerbate physical ailments…psychological factors can affect the
117
severity and/or course of illness and can complicate or accelerate recovery.
Further, there can be an exacerbation of a mental disorder due to a medical
condition (Nagel, 2010, p. 141).
Future research on focal dystonia might be better served by further examination of the
links between the psychological and physical connections of the disorder. Previous research by
Altenmüller and Byl showed that representations of skeletal muscles within the sensorimotor
cortex become corrupted in the brain of dystonia sufferers. Combined with the theories of
cortical shock by Farias and the physical affects of performance anxiety that Nagel explains, it
seems very possible that these corrupted pathways in the brain could very well be initiated by
psychological trauma or illness.
Implications for Practice
With the knowledge that psychology plays an important role in focal dystonia, a critical
examination of the way studio instructors and ensemble directors teach their students should be
undertaken. For generations, the method of teaching an instrument has been for a student to keep
repeating a section of music until it was learned. The research done by Altenmüller (2010), Iltis
(2002), Duke (2009), and Mornell (2015) has shown that this approach is largely not in the
student’s best interest. The brain will cease to learn after a certain number of repetitions, and
over-repetition can lead to injuries, which can ultimately be a factor in the development of focal
dystonia.
The first steps would be to create a more open dialog about musician’s wellness issues.
There is more information available now than there has ever been, but many musicians are still
reluctant to seek medical or psychological help. At least one study showed that over one half of
music students did not report their injuries to their studio teachers, nor did they seek treatment
(Pierce, 2012).
118
It is not reasonable to expect every studio teacher to become highly versed in focal
dystonia and how to recover from it. But knowledge of the resources that are available to the
student would be very advantageous. Trombonist Michael Mulcahy stated that he is seeing an
increase in cases of focal dystonia in recent years. With that knowledge, it would be beneficial if
studio teachers were aware of some of the factors that are common to those who eventually
develop focal dystonia and the symptoms. Hopefully that base of knowledge will allow studio
teachers to not only teach more effectively, but also prevent future injuries.
It would be in the students’ best interest if studio teachers reexamined their instructional
approach. It is obvious that humiliating students to motivate them is not only ineffectual, but
potentially dangerous. Examining an individual’s practice habits and working to create the most
effective methods would be of great benefit to each student. Just because the endless repetition
model might have worked for the teacher, or another student, does not mean it will work for
another person. Teachers should be compassionate about and sensitive to their students’
personal needs, rather than assuming that a student who is not getting results is not practicing
enough and simply needs to work harder. Perhaps the student really needs is to learn to work
more efficiently.
Legendary tubist Roger Bobo wrote in a blog on his website, “Let’s hope the Good ol’
days are gone forever: The good ol’ days when the enraged maestro would strike the student’s
fingers with a cane or a ruler when he or she missed a note” (Bobo, 2006). While I do not
believe that many conductors physically attack their students anymore, psychological attacks do
occur. Both Joseph’s experience and my own demonstrate this reality.
Arturo Toscanini and George Szell, famous orchestra conductors of the 20
th
century,
notoriously berated their musicians, and Fritz Reiner was infamous for calling on individual
musicians to play their parts in the middle of rehearsals; putting the fear of embarrassment in his
119
players to make sure they practiced and could handle the pressure. A now retired brass player
from the Los Angeles Philharmonic believed that, “A scared musician is a good musician”
(Bobo, 2006). Nothing could be further from the truth.
In my many years singing with the Los Angeles Master Chorale, the Los Angeles
Philharmonic, and as a freelance musician I have worked for a number of different conductors.
Some have been more adversarial than others, but none rose to the level of Toscanini, Szell or
Reiner. In that time the best performances that I have been involved with occurred when there
was a definite symbiotic relationship between the conductor and the ensemble. At the very least,
an adversarial conductor does not elicit a great performance from the ensemble. At the very
worst, that conductor can cause serious impairment to the musicians.
Pierce (2012) made a compelling argument for changing the value systems in the way
musicians are trained. She made the point that there is a pervasive attitude within the music
community of “Survival of the Fittest.” Placing an unbalanced focus on competition. She also
found that teachers, and other leading figures in the profession, often exhibit a sometime
pathological narcissism that has been termed “Maestro Syndrome.” Pierce suggested that the
music profession accepts this type of behavior from teachers, while it would likely not be
accepted in other professions.
As Pierce (2012) has noted (p. 155) ensemble directors, whether they are conducting
students or professionals must discard the old methods of instilling fear or humiliating players to
get results. Studies have shown that people who are drawn to the profession of music often are
more likely to be vulnerable to psychological injuries. In many cases this injury occurs at a
young age, which has a substantial effect on the person in higher education and into the
professional world. Pierce quotes psychologist and music therapist Louise Montello who works
with injured or stressed musicians:
120
Most musicians with the [polarized] perfectionist syndrome have experienced
some kind of narcissistic injury or performance-related abuse early in life, usually
at the hands of unaware parents and teachers (Pierce, 2012, p. 158).
Given that perfectionism is one of the hallmarks of musicians who develop focal dystonia,
conductors and teachers who engage in the “maestro syndrome” are potentially setting up their
students for serious problems in the future.
When a player begins to display dystonic symptoms, the old platitudes of, “just use more
air,” “take some time off,” or, “relax,” have proven to be largely ineffective. In the future, a
responsible teacher might recognize that the symptoms are potentially the result of something
more personal and internal. Perhaps this knowledge could point a student toward the help they
might need to prevent the student from incurring further injury, both physical and psychological,
and avoid developing focal dystonia altogether.
For those that have developed focal dystonia, there are no quick fixes. But there is more
hope now than ever before. Recovery most likely will require a holistic, multifaceted approach
involving psychology, kinesthetic awareness, physical therapy away from the instrument, and a
substantial amount of patience.
121
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Appendix A – IRB Approval Form
University of Southern California University Park Institutional Review Board
3720 South Flower Street Credit Union Building (CUB) #301
Los Angeles, CA 90089-0702
Phone: 213-821-5272
Fax: 213-821-5276
upirb@usc.edu
Date: May 15, 2018, 01:38pm
Action Taken: Approve
Principal
Investigator:
Douglas Shabe
THORNTON SCHOOL OF MUSIC
Faculty
Advisor:
Peter Webster
THORNTON SCHOOL OF MUSIC
Co-
Investigator(s):
Project Title: Task Specific Focal Dystonia
Study ID: UP-18-00283
Funding
Types:
No Funding
The linked
image
cannot be
displayed.
The file may
have been
moved,
renamed, or
deleted.
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This study has been determined to qualify for the USC Human Research Protection
Program Flexibility Policy. If there are modifications that increase risk to subjects or if the
funding status of this research is to change, you are required to submit an amendment to
the IRB for review and approval.
The University Park Institutional Review Board (UPIRB) designee determined that your project
qualifies for exemption from IRB review under the USC Human Research Protection Program
Flexibility Policy. The study was approved on 05/15/2018 and is not subject to 45 CFR 46
regulations, including informed consent requirements or further IRB review.
If there are modifications that increase risk to subjects or if the funding status of this
research is to change, you are required to submit an amendment to the IRB for review and
approval.
Consent and recruitment documents are not required to be uploaded for exempt studies; however,
researchers are reminded that USC follows the principles of the Belmont Report, which requires
all potential participants to be informed of the research study, their rights as a participant,
confidentiality of their data, etc. It is recommended that you utilize the Information Sheet For
Exempt Research and revise the template to be specific to your study. This document will not be
reviewed by the IRB. It is the responsibility of the researcher to make sure the document is
consistent with the study procedures listed in the application.
You are responsible for ensuring that your project complies with all federal, state, local and
135
institutional standards. Please check with all participating sites to make sure you have their
permission (including IRB/ethics board approval, if applicable) to conduct research prior to
beginning your study.
All submissions, including new applications, contingency responses, amendments and continuing
reviews are reviewed in the order received.
Attachments:
Recruitment Tool Instructions.doc
Information Sheet for Exempt or Flex-Exempt Studies, dated 03-29-2013.doc
Social-behavioral health-related interventions or health-outcome studies must register with clinicaltrials.gov or
other International Community of Medical Journal Editors (ICMJE) approved registries in order to be published in
an ICJME journal. The ICMJE will not accept studies for publication unless the studies are registered prior to
enrollment, despite the fact that these studies are not applicable “clinical trials” as defined by the Food and
Drug Administration (FDA). For support with registration, go to www.clinicaltrials.gov or contact Jean Chan
(jeanbcha@usc.edu, 323-442-2825).
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136
Appendix B: Further Resources
Farias, J. (2018). Farias Technique: neuroplastic movement therapy.
http://www.fariastechnique.com/focal-dystonia-ebooks/
Farias, J. (2016). Limitless: how your movements can heal your brain.
http://www.fariastechnique.com/focal-dystonia-ebooks/
Farias, J. (2012). Intertwined: how to enduce neuroplasticity.
http://www.fariastechnique.com/focal-dystonia-ebooks/
Farias, J. (2010). Rebellion of the body: understanding musicians’ focal dystonia.
http://www.fariastechnique.com/focal-dystonia-ebooks/
Lewis, L. (2018). Healthy embouchure guide for comeback and amateur brass
players. New York, NY. www.embouchures.com.
Lewis, L. (2017). Broken embouchures: a handbook for understanding embouchure
dysfunction. New York, NY. www.embouchures.com.
Lewis, L. (2016). Embouchure Rehabilitation. New York, NY.
www.embouchures.com.
Vining, D. (2014). Notes of hope: Stories by musicians coping with injuries.
Flagstaff, AZ: Mountain Peak Music.
Vining, D. (2009). The breathing book: Tenor trombone edition. Flagstaff, AZ:
Mountain Peak Music.
Sarno, J. (2006). The divided mind: the epidemic of mindbody disorders. Regan
Books: Harper Collins.
Sarno, J. (1998). The mindbody prescription: healing the body, healing the pain.
Grand Central Publishing.
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Scragg, D. and Fabra, J. (2009). Focal Dystonia: understanding and treatment as an
emotional condition. https://youtu.be/YKGq9OPN19c.
Schwartz, J. and Begley, S. (2003). The mind and brain: neuroplasticity and the
power of mental force. Harper Collins.
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Appendix C - Scripted interview questions
Could you discuss your earliest memories of playing the instrument?
-How were you taught?
Could you describe your formative years in H.S. and college?
-Were there any particularly traumatic experiences?
What was your knowledge about FD before you developed symptoms?
When did you first begin to experience symptoms?
-Do you recall any specific incident(s) that you believe may have triggered them?
-Were you working to specifically address any perceived weaknesses in your playing at
the time?
-What were your first thoughts/actions on solutions? Results?
How did you perceive your colleagues’ reactions to your condition?
-Did they notice issues with your playing?
-Did you discuss it with anyone? Why?
What information was available at the time?
-Who/what did you seek information from?
-What was your reaction to what you found?
Describe your rehabilitation path.
-Did you have particular epiphanies along the way?
-How did you handle good and bad days? Did you ever consider giving up?
-At what point did you feel that you had completely recovered?
-Do you find yourself worrying about relapse?
What suggestions do you have for further research or for those affected by FD?
Are there any other points you would like to make that I haven’t touched upon?
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Appendix D: George Jones Interview
Date of Interview: June 5, 2018
Duration: 55:37
Location: The interview was conducted via Skype. The interviewer was at home,
and the interviewee was in his office at his place of work.
Recording Device: Call Recorder for Skype.
Shabe: I think from what I understand you and I both kind of started experiencing this
about the same time…you were brave enough to do something about it. I personally didn’t
know what to do and no one around here in Southern California had any ideas. And,
pretty much, my teacher gave up on me so I just moved on (nervous chuckle) with life…
Jones: I’m sorry to hear about that. So what are you doing now, Doug?
Shabe: Well, I’m finishing my DMA at USC in music education and I fortunately found at
the same time I was having trouble with my trombone chops that I was a pretty good singer
so I’ve made my performing doing that here for a while. But I’ve never given up the idea
that I would like to be able to play, and I’ve been able to join some community groups. But
I need to focus on how to do this…my issue is in my jaw…(demonstrates) so I get that
going. What I was able to do was…it was in an article that someone wrote, a British
trumpet player, that put dental splints in. And at least it enables you to play with friends
and stuff while you’re trying to figure out what the heck’s going on. It’s a little different
than having your lips quivering, but still…
Jones: So you get a pitch quiver when you play?
Shabe: Well the jaw, the whole jaw…what happens is that it wants to clench down. It’s
that flinch reaction…it started that way after I was playing once and I thought everything
was going great, and the guy next to me said, “why don’t you try playing it in tune some
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time?” Then I immediately just decided that I didn’t know what the hell I was doing
anymore, and clenched up on everything.
Jones: Wow, sorry to hear about that
Shabe: So that’s how it went for me but nonetheless I’m hoping that all of this research
can get more people knowledgeable about the situation because it’s amazing how many
people have no idea what’s going on.
Jones: Sure
Shabe: And certainly in my case, it started people had never really heard of it but I had
heard whispers. No one ever wants to say anything cause it will happen to you…which
brings me to my first question, “What was your knowledge of Dystonia before you started
experiencing your symptoms?”
Jones: Much like you, virtually nothing. So I followed the typical track. The first thing you do
is go back and ask your old teachers what’s going on. They scratch their head. They
typically…people don’t know anything. If a musician does happen to know something about
dystonia, it’s that Dystonia is a death warrant, it’s the end of your career. Those were the
whisperings that I heard as well. So I went to musicians first and doctors second. Of course I
went to my GP who had no idea, and eventually you find your way to a specialist. Ended up in a
neurologist’s office…the first guy that I saw was not sensitive to the needs of a musician. He
said, “yeah you have this dystonia thing, why don't you just switch over to the saxophone?”
Shabe: That’s helpful
Jones: Which is only funny in retrospect…
Shabe: Right, of course
Jones: It was just devastating and there are, as you probably know, a handful of neurologists
who are also musicians, who understand the needs of musicians, and who are doing their
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research in this area. I found my way to Dr. Lederman at the Cleveland Clinic who is a very nice
man and he went through the whole thing and gave me a ‘workup’. He videotaped my
embouchure and slowed it down and gave me the diagnosis and he said, “Listen, we don’t really
have any help for you…we’ve had limited help injecting the Botox” and he was willing to do
that, “But I can’t make any promises.” He was very straightforward and I appreciated that.
And at the time I was so desperate that I went ahead and made the appointment. We
lived not too far away and I drove. You know, the Botox, once they open the bottle they have to
use it all because it expires. So he reserved a spot for me that Friday and I drove home and my
wife thankfully talked some sense to me. She said, “You know, you don’t want to deal with
this.” So I never did do it.
In the meantime, I did chat with another prominent musician, a Tuba player, who had it
done and I asked him, “What is your thought about this?” and he said, “Well, if you want to say
you did everything, go ahead, but it didn’t help me.”
Shabe: It seems that it’s just covering up the problem
Jones: Yeah
Shabe: And it’s just deadening the muscles. So how does that really help…what exactly
was going on in your face? If you can describe it…
Jones: The colloquial term that the neurologists have coined is ‘lip lock’. Which is very
descriptive, and what happened was I’d take a deep breath and get ready to blow out and the
orbicularis oris, which are the surrounding muscles, would just clamp down. Would spasm.
And the harder I’d try to blow through the aperture, the more they’d clench. And that’s a very
typical presentation for low brass players. So it was lip lock…
Shabe: So it wasn’t an actual quiver, it was a (clenching sound and hand movement) like
writer’s cramp.
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Jones: Right….
Shabe: Was there anything specifically that started it? Did it…one day it started
happening, or were there little warning signs?
Jones: So I do remember that I was practicing and I would just try to play a C in the
staff…second space up…the note just didn’t center right. So, of course, as musicians we’re
trained to go back and practice it. And that’s exactly what I did. I started really working that
range. And the more I worked it, the worse it got. The note, it just wasn’t centered and then it
started splitting. I just couldn’t find the note. And gradually over weeks, the note became two
notes. I couldn’t find the C or the B. Then I couldn’t find the C, B, or Db.
Before you know it, it expanded in both directions…Although mainly downward. But it
got to the point where I just couldn’t play anything. The most frustrating part was the harder I
tried, the worse it got. And as musicians we’re not accustomed to that. We’re used to that when
you practice, you improve. It’s quite frustrating because it didn’t follow the normal parameters
of our lives. And that’s, of course, the uncomfortable time when you don’t know what’s really
going on. And as we just described, you go to teachers and pedagogues and ultimately you get
funneled into the medical side of things. And that’s really what happened to me. Of course, as
you know, with any dystonia, there’s never any pain, like a muscle tear. If there had been pain, it
probably wouldn’t have been dystonia. And so it’s basically a muscle spasm, and it just got
worse and worse.
Shabe: So this was the time you were at the conservatory, right? Tell me a little about
your…the mental…as you were sort of falling into this, did you feel that everyone was
staring at you, or just going into this little bubble? I know that’s how I was. Everyone’s
looking out the side of their eye, “What’s wrong with him?”
Jones: Yeah, well, I was new there and I had just come from my previous job, where I was on
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faculty, and literally about a week after I was granted tenure there, somebody from the search
committee at the conservatory called me up. And they said, “we’re not finding anybody in our
searches, would you send your stuff out?” And I had everything assembled because of my
tenure pack, so I said “Why not?” I wasn’t looking, so I just sent my stuff out there. Well, just
as a footnote, as it turns out, the chair of the search committee was best friends with the guy I
took lessons with back in a long time before. Well he was real good friends with the horn
professor at the conservatory. He’s the one who called me, so I traced it all the way back to my
time with that teacher. The musical world is really small.
Anyway, I got this gig at the conservatory and, at the same time, we had our second
child, and I was making a solo CD. I reflect back on that time, not to mention, I don’t think I
was a good fit thereat all, even if I had been healthy. It’s an orchestral training
ground/conservatory, and I’m from the other side of the track. I’m a pragmatist. My
background was in chamber music, not orchestral, although I had enough experience
(orchestral). I think all of these factors contributed to my issues. I do remember a trauma that
happened when I was ‘wrasslin’ with my son. His noggin hit my upper lip and it just swelled up.
I had to do this solo tour down south, and I remember being at LSU and I was ready to give my
recital and stuff just wasn’t speaking. So I had to change my program, I muscled through it. It
was not good.
I don’t think any one of these issues caused the problem, I think it was a combination of
things. Furthermore, I think that in addition to all those things, there is a genetic X-factor. I
don’t have any scientific basis for this, other than, if it were just that you were under a lot of
stress and you played really hard, then Lindberg would have dystonia, but he doesn’t. I feel like
there has to be another variable that can only be explained by your wiring. Genetic
predisposition. So that in combination with all the other factors in my life, they all converged to
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make the situation. And being at the conservatory was not helpful because I felt that place where
the students are upwardly mobile and very competitive, the whole environment is not conducive
to getting better. So it was a pretty quick downward spiral. And very uncomfortable.
We haven’t gotten to the recovery part, but I had a hell of an incentive to get better. It
wasn’t like I could take it or leave it. And with some of the people who contact me it really is
like that. They’re tired and they’re seeing what they can do with it. There’s very little incentive
for them to put the work in that’s necessary. I don’t mean to sound like I believe that everyone
can get better, because I don’t. I have worked with people that are so bad off that I can’t imagine
them getting better. And the other point I want to make is when I work with people I don’t claim
to have any expertise beyond my own personal research and experience. I’m not a scientist or
neurologist. And I state that up front. If they want take what I did and extrapolate it and apply it
to their own situation. That’s typically the best possible outcome. Because I think to get better,
you just have to do it yourself.
Shabe: So this all goes down and you’re in a situation that you don’t feel comfortable in.
You get your diagnosis, where did your brain go from there? Was is like “I give up” or “I
can fix this” or maybe all of the above?
Jones: I don’t mind talking about it. That turns out to be the most personal part of the story for
me. Because it was “the lowest point”. Here I am with this new job, two little kids, mortgage.
I’m not tenured, I’m an asst. prof there at the conservatory. Student reviews are coming back
and they are ‘not glowing’. So there’s a lot of pressure, and I sank into clinical
depression…serious stuff…that was very scary. Again, thankfully, I had a support system, my
wife encouraged me to seek help. I talked to a psychiatrist and that was extremely helpful.
Shabe: Did you see a therapist, too. Full disclosure, I’ve done both and take medication
for depression/bipolar disorder.
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Jones: Fortunately I never got to that point, for me it was a temporary situation that I was able to
pull out of after 5 or 6 weeks. I did a therapy called EMDR (Eye Movement Desensitization
Reprocessing Therapy) There’s a way that when the eyes move back and forth it helps the right
and left-brain communicate. So that your emotions can come to the surface. People who have
been in traumas, sometimes this helps them. It’s done with eye movement, and the more high
tech version is done with headphones and beeping sounds. Originally, I thought this would help
the problem, but it didn’t. What it did do was that it helped me empty my emotional garbage
can. It was extremely important. I didn’t know it at the time, but I couldn’t even think straight
because I was caught up in this whole thing and so worried and stressed out. So this first step of
acknowledgement and coming to terms with things was imperative for me.
So in answer to your question…severe depression and at the lowest point I started
looking to change careers. I read the book “what color is your parachute” and I was on the
verge, I was ready to bag it. That was the initial reaction.
Shabe: But then something popped in you that said, “no”?
Jones: Well………..I don’t have a real good answer for that turning point. I guess I did feel like
I wasn’t done somehow. Here I had this great new job. It was unsatisfactory to me that the
neurologists would say, “Well, we don’t have any treatments, look for another career.” And I’m
thinking, “What!?” When you go to a doctor you expect a pill to correct the problem, and when
you go to (this) doctor they say, “Well, we don’t really know.” That was unsatisfactory.
For me, the flame inside of being a musician never went out and I felt like if it had
extinguished somehow, I would have moved on. There was always this flicker way deep
down…not to sound corny about it.
Shabe: I get it, believe me. I’ve thought twice in my career about changing jobs, and then
something always happened to bring me back.
146
Jones: There was one other thing that happened that’s important. I was thumbing through the
International Musician and they have these letters to the editor and there was on letter in there
from Barbara Conable. And it was something like “How Dystonias can be Treated” or
something like that. It was the very first time that I saw some glimmer of hope. I didn’t know
who she was and I didn’t know anything about it. But I just happened across it. Ironically, there
was this dialog back and forth from one issue to the next. Because in the next issue there was a
rebuttal of Barbara’s letter from Glen Estrin, and he’s on the medical side.
So he’s involved with the Dystonia research at New York Presbyterian Hospital, and
came back at her with both guns blazing and said, “You have just completely undermined all of
our work. Here we are working hard for a cure, and you come along and say that you already
have one…” There was a back and forth.
I kept thinking that this was really interesting, because, and this sounds a little goofy, but
if you were to look at Barbara’s position as being from the “State University” side of the musical
tracks, and the other side is the large drug companies. I don’t have any beef with either. I’ve
always felt, in my own mind, that I’m ‘scrappy’. I’m the David vs. Goliath. I thought to myself,
“I wonder what’s there?”
So I went to Barbara in Portland and had an Alexander lesson with her. She’s a very
talented Alexander teacher. And I remember I’m sitting in a chair in front of a mirror, and she
walked up behind me and did what Alexander teachers do. She manipulated my head and I
watched my neck lengthen. I saw it in the mirror. I probably grew an inch. I said, “Wow, that’s
unbelievable! Can you do that again?” And she said, “I don’t need to, that’s yours.” I thought
that was really poetic.
That was my introduction to somatic methods, movement therapies that are holistic as
opposed to medical. And I don’t want to send the wrong message, it wasn’t as though I was all
147
cured. But I did see an alternative pathway for the first time. And Barbara is a strong-willed
lady who is infectious with her enthusiasm for these therapies. One of the things, as I reflect on
it, that did not help, was that she said, “well, if you just do these things, you’ll be fine.” No I
won’t.
For me there was a real balance between receiving her help, and checking in with the
reality that I knew in my gut that there’s more to this than what you’re saying. I had to unlock
all of these equations to get to where I could play again. That in itself is a really long story.
There was a lot of overlap between the depression, seeing doctors, seeing Barbara, it was all
mixed up. Job hunting, kids, mortgage, it’s like ‘Waaaa’, you feel like your head’s gonna
explode. But once I saw some hope, a little more direction so that I could start to move toward
something, anything, it was better than nothing.
Shabe: You feel like a big part of that was working with Barbara on the Alexander, or I
think I also read that you went and did Jan’s (Kagarice) retraining course?
Jones: Yeah, that’s the long part of the story of the recovery. Once I got in a place where I felt
like I could start working on this, then I started seeking out these therapies. I drove from
Columbus to Cincinnati, to take a series of Alexander lessons from a man named David Nesmith
who’s a horn player. And he introduced me to something called ‘body mapping’, which is an
offshoot of the Alexander Technique.
The biggest difference is that with an Alexander teacher, they manipulate your head or
your body in some way, and body mapping is self-exploration. Body mapping is based on the
principle that you have a map or diagram in your head of the way that you believe your body is
assembled and how it’s supposed to move. And if your map is inaccurate, it will force your body
to do things that it’s not designed to do: notably in the area of breathing.
This was revelatory to me because prior to dystonia, I was a belly-dancing breather. It’s
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embedded in our traditional pedagogy, and it’s baloney. Now my message here is not that
anybody who breathes improperly will get dystonia, it’s not that simple, but for me it was one
more in a series of contributing factors. So part of the recovery was learning how to breathe
properly and mapping my body properly, and not one of these things was a panacea in and of
itself.
So what I managed to do was carve together a cocktail of therapies until I found a way to
put it together for myself. And the other thing I would say is the movement therapies, both
Alexander, body mapping, and Feldenkrais were extremely helpful. What they did was brought
me to a sense of kinesthetic awareness, and brought my body to a sense of ‘neutral’ so I could
clearly think about how to retrain. For me it felt like a two-step process, although it wasn’t
linear. It was all mixed up. The movement therapies did not directly address and fix the
problem, but they did set the stage.
So by the time I had come to this awareness, the spasm was still occurring. I felt better,
but the spasm was still occurring. I knew I wasn’t done. That’s when I found Jan and I went to
Chatauqua where she was working during the summer. And I worked with her for 4-5 days. She
was extremely helpful. But it still wasn’t done. I still felt like every time I went to blow there
was a hitch…stuttering…it was certainly improved but I still could not play in public and I
certainly couldn’t get tenure at the conservatory. So after all of that work, it still wasn’t right.
Shabe: How much time do you suppose went by from the beginning…when it started to
where you’re at this point?
Jones: I still have the letter from Dr. Frucht. I was diagnosed in May 2002. Symptoms predated
that probably by 6-8 months if not more. I feel like it took me from the time that I got the letter,
to the time that I could actually play in public, it was 2.5 years…my best estimate.
Shabe: I was thinking how long from the diagnosis to when you went to Jan…
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Jones: Maybe a year and a half. Somewhere in that area because I did feel like at that point I
had some forward momentum…I felt like I was going to get better. I was right on the edge of
being able to do some stuff…wasn’t quite there yet…there was something missing. When I
finally got to the point where I was putting it all together, that’s when I devised my own system
of consolidating everything, putting it all together, and having my own way of doing it.
Part of that came from some of the research that I had done by myself, reading books by
Jeffery Schwartz called “Mind and Brain”. And I got into ‘neuroplasticity’. Which is basically
that you can ‘teach an old dog new tricks’. As you know, science tells us the ‘golden number’ is
10,000 repetitions. The other thing from my research is…they were working on this
neuroplasticity idea with monkeys. They put the electrodes on the monkey so they could see
where the brain waves were firing. The monkey was right handed. They would encourage the
monkey to reach with the left hand, and measured the brain waves. And after 10,000 reps, the
monkey started to represent the left-handed grab in the brain. So I’m thinking, “Monkey –
Trombone Player” (laughter)…that’s just about right. And that, for me, was important, because
it put a price tag on the number of reps. So here I am…I’m at a point of ‘neutral’, I know all
about my body, I’m kinesthetically aware…Jan got my air moving…now what do I do?
Well I devised this thing where I would just blow no sound a whole bunch. The reason I
say that is I was imagining that if my spasm is in ‘effort-wise’, a 10 on a 0-10 scale. If I’m at 0,
there’s no sign of spasm, but the moment I try to engage a little bit, the meter pegged. So I’m
thinking I need a 2 or 3. I try to make a 2 or 3 and and it (pegs again)
Shabe: So you’re forming and embouchure but you’re keeping it as loose as you can, or
are you just blowing (without any formation of embouchure)
Jones: The watchword here is, ‘no spasm’ no matter what. (gets instrument for demo) I chose a
phrase that I knew would be treacherous. It’s a stupid little fanfare from the Bozza Ballade. It’s
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in the right register…the tongue…it’s just a nightmare for what I was going through.
So I took that phrase and I would blow through with exaggerated air (demonstrates). Just
moving air, using my tongue, thinking the sound I wanted…moving the slide…everything is the
same, except there’s no sound. I satisfied myself by thinking, “Well, there’s no sound, but
there’s no spasm.”
It was the first time that I was able to duplicate playing, spasm-free. Which was super-
important. Because when you get into this ‘rabbit hole’, then there’s this biofeedback. You just
know what’s gonna happen, and it just feeds on itself. You’ve gotta find a way around that.
So if you think about this pathway in your brain that’s corrupt, you’re not going to repair
the pathway…not in my opinion…I feel that I still have the corrupt pathway. What I did was a
conduit around... you remember the old Farkas “The Art of Brass Playing” with the pictures in
the middle with the Chicago section using visualizers. Well, that’s the old definition of
‘embouchure’. And it is, by definition, without motion. It’s a still, 2-dimensional picture.
There’s the problem. I had to redefine ‘embouchure’ so that it’s this (blows air across lips). It’s
motion, it doesn’t exist without air and it’s in three dimensions instead of two.
Shabe: So sitting around doing this all day (makes embouchure) isn’t going to do you any
good.
Jones: That’s not going to help. While that may seem simplistic, it was absolutely key. By the
way, as a quick footnote, there’s this product out there called ‘Chop-Sticks’. And they’re sticks
and you hold them with your lips. They’re designed to strengthen your muscles. They get
heavier….I can’t think of a less-healthy product…literally dangerous. Between me and you. If
you want to get dystonia, use these….
So back to my retraining process. The other part of this that I did, which may or may not
have scientific credence, is I thought to myself…the way to create the new pathway in your
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brain, the way to make these neurons fire together, is “What are you thinking?” Because the old
way, I was ‘eating red meat’. Grrrrr. It’s not like I thought carefully about that, it just worked
really well for me for a long time. Now it doesn’t work any more. I had to redefine how I was
playing.
I took index cards and I wrote little sayings on there like, “Blow freely.” I would put the
‘blow freely’ card on the stand. I’m looking and thinking about that phrase as I blow through
this exercise. This is brain work…brain and air. And I’m thinking, thinking, thinking. I turn
that card over and the next card says, “There is no embouchure,” or something that has meaning
to me. I think I have 150 cards with different phrases, and I’m turning cards over one at a time.
I get 10, I make a little score mark on my check sheet, because I’m going to 10,000. So as
obsessive as I was to get into this problem, it’s gonna help me get out.
Much to my surprise, mind you…I’m thinking to myself, “Here I am at zero,” in terms of
effort. I probably need a 2 or 3, which I figure I’ll get to eventually. But right now I’m gonna
stay at zero, because I have to move air. I got up to repetition 3,000, somewhere around there,
and I went to play, and I’ve got the card on the stand, (demonstrates the example). It didn’t
sound that good, but the sound came out spontaneously. And in my head I’m still at zero.
Shabe: Was it the notes you were expecting?
Jones: Yeah, it just came out. It was total Arnold Jacobs. Sing and Blow. That’s all it was.
Very simple. It took a long time to get to that point. And I think it’s meaningful that I had this
foundation that I described to you. But all of these repetitions, as best as I could muster, they
were thoughtful. I was always thinking about what I wanted to happen. And I kept thinking,
“Okay, there’s no sound, but there’s no spasm.” And if I ever incidentally incurred a spasm, I’d
stop, go have a drink of water, and then come back.
At that point, that was really my ‘Aha!’ moment. I knew at that point that I was going to
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be okay. Because from that point forward, it was just repetition and refinement…keep
thinking…that sort of thing.
To be clear, I don’t think that neurally I’m at zero effort. The reality is something
different, but I don’t care. It doesn’t matter. I couldn’t play before and I can play now, and
that’s all I care about. So that’s what happened. It took a really long time.
And in the meantime, things were not going well at the conservatory, it became clear I
was not going to get tenure. They have a system there where you go up to year 5 and get tenure
in year 6. So I took that last year off, and I was right on the cusp of being fully recovered when
this job came open. So I circulated my resumé out there and my audition here wasn’t perfect.
But I think the committee was very forward thinking, and I was open about the whole thing. I
told them everything that happened. I said, “I’m almost healed. But I’m going to get there. “
And they were all over it. It’s a big step down the career ladder, but I’m so happy.
Shabe: How is it a big step down?
V: Well, from the conservatory to here, come on, in terms of profile. My point is that I’m so
happy in that the people here appreciate what I’ve been through. And students are respectful and
curious, and that’s like the opposite of the conservatory. Anyway, a couple of years after I got
here, I decided to start my own publishing company because I had all of these things floating
around in my head. And I wanted to share what I learned, but I didn’t want to be the dystonia
poster boy…Clearly I don’t mind talking about it, but I thought that I could help people in other
ways that would be more far-reaching, so that’s how I started my publishing company.
Shabe: You said that the minute that fanfare popped out, and you had no problems with it,
you knew at that point that you could fix everything…
Jones: That was my ‘Aha!’ moment.
Shabe: From that point, were there back steps, where you started doubting yourself?
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Jones: Yeah, of course. And, to be clear, when I say that sound happened spontaneously, that’s
exactly what it felt like. It was totally unrefined. It felt totally out of control. And I was so
happy. (Laughter) It didn’t matter that it didn’t sound good. All that mattered is that I created
sound, spasm free. That’s the only thing that mattered, because from that point forward, it’s just
refinement. You just have to stick with the program, and by that point I had been doing it for
long enough that I knew had to do it. At this point I had to create enough confidence that I could
do it in front of people. You can kind of fill in those blanks. There was still more work to be
done…but I had a cold beer that night.
Shabe: It can be done!
Jones: Well, in some cases it can. One of the things I think is critical, at least it was for me, is
that you’re not trying to recapture what you once had. One of the people I worked with said,
“why don’t you just watch old videos and do what you did?” I did that, and it got worse.
There’s a big difference between trying to recapture your old glory days, and redefining the
future. So the Y in the road here is the understanding of that, and willingness to reinvent
yourself.
So when I work with people I tell them that your new motto is “different is good.” If it
feels just like it used to feel, you’re not getting better. It’s gotta be different, you have to have a
new way to play to form that conduit around the aberrant pathway.
Shabe: And that’s how you kept your brain going as you were retraining. “The old way is
over, stay on the new path. Even though I’m battling…”
V: Yeah, you’re absolutely right. If you were to brush your teeth with the other hand, you’d feel
it. You’d feel really uncoordinated. Yes, that’s exactly it. You’re basically trying to find a way
to play the trombone that avoids the old pathway. That’s not easy, and it took a long, long time.
Those old habits are pretty secure. You have to form new habits.
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Shabe: At some point they worked for you, but not anymore
Jones: Basically
Shabe: I remember reading in your book about ‘redefining yourself’ and that was part of
your recovery process.
Jones: That is correct. Prior to recovery, trombone was everything. And after, it is just another
part of my life. If you want to call that part of redefining the future, I think that is pretty clever.
Because the more you can draw the new you into focus, clarify it, then the more you know what
you’re striving for.
In the Alexander technique, they call this ‘global awareness’. So that you’re not so
myopic as to draw so much attention into a single body part that you create problems for
yourself. You need to play the trombone with your entire body, and your environment, and the
floor, etc. There are a lot of correlations there. The other correlation, at least for me, was, as I
said, I had tremendous incentive because of my work situation. I’ve often thought that I
probably could have filed some sort of lawsuit with the conservatory because I could have
contended that I did not get tenured because of a physical ailment. There probably could have
been lawyers involved and all that. I am extremely glad that I did not do that. I have no hard
feelings. It was what it was. I used to play the way that I did and I had a lot of success that way,
and now I’m doing it a different way. There’s a new job.
Shabe: And it sounds like the new job is a better fit.
Jones: Definitely
Shabe: I think I got to everything. Is there anything else you’d want to add at the end
here…I remember…you spoke of having Barbara on one side and the Medical on the
other…going at each other. Why can’t we bring the two together…the question of Dogma.
“This is the way it must be done”…at least that’s how I was brought up.
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Jones: That’s a real good point. And I see it on both sides. Barbara said, “Oh, just do this and
you’ll be fine.” And that wasn’t helpful, either. So you’re right, you’re drawing these lines in
the sand, and I feel like I took it all and mixed it all up. I made this cocktail and took charge of
my own recovery. Really kind of an Eastern Philosophy of combining modalities instead of
parallel paths.
Shabe: And I like that idea. At some point did you find that you were trying stuff that
wasn’t working and you tossed it out and tried something else.
Jones: Yeah, for sure… I think it’s hardest for people in those big time orchestras. First of all,
you have to take time off. If you’re going in to rehearse and play every week, it’s just not going
to get better. Even if you work really hard to retrain during the course of the week, and then on
the weekend. You’re just going to deepen the bad groove. It’s just treacherous. I think that is
the hardest situation….there’s a lot of stigma attached to it.
End of Transcript
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Appendix E: Joseph Walker Interview
Date of Interview: June 15, 2018
Duration: 50:23
Location: The interviewer was in his home, and the interviewee was in his office at
his place of employment. Because of technical difficulties with Skype, the interview
was conducted by phone.
Recording Device: Audacity on an IMAC Pro.
Walker: We did a case study with live MRI embouchure dystonia patients to see if they could
assimilate normal positions of the tongue inside the mouth …they’re manifesting odd tongue
conformations inside the mouth along with the usual lip pull. We put them in the scanner and we
had them do some simple exercises and noted the tongue movements that were bad. Is it that or
is it something else?
We gave them exercises from simple to more complex and we were able to demonstrate
that they have fine control of the tongue like most people. But once you add layers of
complexity, approximate playing, the control becomes worse. The idea is to use visual feedback
as an intervention strategy, over time, and you begin to establish a kinesthetic link
between…they’ve never felt their tongue before…now we’ll try to establish that link over time
and see if it has any resilience. It’s a novel thing. I’m not super optimistic about it but it’s
important enough to publish it…We’re running more tests on normal trombone players in
Germany to add to our database of knowledge for people to tap into and research.
Shabe: I watched the ones with the horn players and it was interesting how their tongue
placements changed. And how they flicked and/or goosed certain notes, which we’re often
told to avoid…(discussion about my background)…What I’d like to do is find out about
your personal journey. I saw that you came from a family of horn players and went to
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(college) as a horn major but decided you didn’t want to do that…performance anxiety you
mentioned in your presentation.
Walker: This is a timely question for you to ask…you will come across in the literature a
constellation of factors that seem to be contributing triggers. When you think about it, it’s really
interesting to reflect on what point during my playing as a kid growing up…I started at 8 yrs.
old…I grew up with the (famous horn player)…So when you’re thinking about treating dystonia,
you have to be holistic about it. There are lots of strategies. Some use botox injections, but
that’s killing off the receptors which is an artificial external treatment…you have all the way
through retraining, using splinting techniques, trying to learn new procedures…The notion of
going after the psychological components of it.
The whole world of neurologists maintain that, and they’re correct, dystonia is the
outgrowth of basal ganglia malfunction. But I had trouble getting any of them to talk about the
psychological component of it. Is there a psychosomatic component to this disorder? And to the
extent that anxiety or some trauma related to anxiety contributes to developing it. There are
many books, I’m reading one…there’s a doctor out of NY, Columbia University, basically
talking about the mind-body link…trying to summarize it in Reader’s Digest form…there’s a
guy in Spain, Joachim Fabra, I interviewed him as the ‘medical issues’ writer of the Horn
Journal. His approach is treating all dystonia as a syndrome which is indicative of deeper
psychological wound that needs to be dealt with.
So you have people from a very mechanistic/physiologic perspective, and on the other
end of the spectrum, people saying, “forget about all that noise. It’s really about getting in touch
with your inner self. Finding out where this wound or injury has occurred.
All of that as preface to my story, it really begins as a young horn player. My (teacher)
was a great horn player and great teacher. One of the strategies for teaching…now I’m not
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blaming (this teacher) for what happened to me…one of them was to play something 5 times in a
row without a mistake. Oops, that’s one, start over, back to zero. This constant pressure, well
that doesn’t help, it adds stress. I’m sure that was part of it way back when…I was a good horn
player, had a lot of opportunities. There were certain situations where the stress was put on in
odd ways. It affected my psyche for sure. And I am a perfectionist, all of those things, that
describes me.
So then comes college. I could have gone anywhere, but I get to a big music school and
my teacher had studied with another teacher at this school. I was a junior high student when he
did his doctorate and met the college teacher then and wanted to study with him when I got there.
To make a long story short, there was a political quagmire going on when I got there. There had
been two great teachers there, and my high school teacher wanted me to study with a particular
one. So I went to that person’s office as soon as I got there, 17 yrs. old, and the guy has flown
the coop. He went to Canada. I don’t know why, but he was gone. In his place came another
respected teacher, a pioneer. But, frankly, the pedagogy, I didn’t buy the things I was being told
in lessons and so forth. But I had to study with that person. That was the bottom line.
Cut to the spring semester…fall semester, I think we had about 64 horn players…took
my audition and I think I placed 15
th
, and that includes grad students. So I was in a pretty good
spot for a young kid. But I did not play in any orchestras during the fall term. I had a job in the
band department...I worked for the marching band. After that first semester I decided it was time
to get back into orchestra, so I auditioned again, and I bombed the audition. It was just
hilarious…I could tell you a story about it, but…I swore on the tape…it was just ridiculous.
Shabe: (Laughter) we’ve all been there, believe me.
Walker: So, anyway, I had a lot of potential so they put me as principal horn of the wind
ensemble, which is a pretty high falootin’ spot. And that was playing for a prominent wind
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ensemble director, which…that’s a long story, but…so before I’ve played one note for him, he
calls me into his office, has me sit down in front of his big desk, and he says, “I’ve never had a
freshman ever, in any of my ensembles.” He’d come from another big music school, so he was a
big name and had a great reputation as a wind ensemble director. So here he’s basically saying
that, “I don’t like the fact that you’re playing principal. I’ve never had one before. I don’t care
how good you are, you’re going to have to prove yourself to me.” This is before I ever played a
note…I’m 18.
So, first rehearsal, Overture to Mignon. Big horn solo. All these grad students are sitting
down the horn section looking up at this young kid just waiting for me to trip. To make a long
story short, that solo totally psyched me out. It was traumatic…traumatic…time where I
basically had to relinquish the chair. My teacher, dragged me into the office and railed on me.
“What are you doing?” Blah, blah, blah…Another teacher knew what was going on, he felt
terrible about it. That, I would say, is a really serious precipitating trauma for me. I think is a
deeply rooted influence on the development of this disorder. Which really didn’t hit me until
many years later…many years later. I was in my late 30’s.
I put the horn away completely. I just left it out of my identity until I hit about 29. I was
getting my doctorate at the time, my old teacher was teaching at a nearby university and playing
principal in the local symphony. And he said, “Come on and play with me. Take an audition.”
So I played with him in that orchestra for 3 years. It was fabulous, and I got over my nerves.
Everything came back. So I really pursued it heavily when I came out to my current position. I
studied with a guy from the symphony and I was playing in a second tier orchestra in the city.
At about 39-40 years of age. I started to notice things…for me, it is a muscle pull
phenomenon. Basically, the labioris superior muscles started pulling, and ruined the
embouchure. And it just got worse, and worse, and worse. I started seeking medical help. I
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was diagnosed in Boston, and also in NY by Stephen Frucht. And that was it…horn gone,
identity, that part of my life is gone. And it was huge…really hard. So that’s sort of the story of
things that contributed to its development. Not only that, but when I developed it, it was not just
psychological trauma, I was actually trying to master my low register. So I was hammering,
practicing, everything in the low register, repetitively. Doing everything badly. I was doing
exercises to sustain my endurance. Things like isometric contractions of my facial muscles as
tight as I could, in intervals, to try to build up their endurance. Just idiotic things…idiotic in
retrospect, that all exacerbated the problem and basically hard-wired this excess tension. So
that’s the story of how it developed. And from that point, around 2001-02, everything
subsequent to that has been an adventure into trying to figure it out. Figure out fixes. First it
was how to rehabilitate myself, and then it’s become much bigger than that. We’re trying to
figure out how to study this disorder. And that’s my story in a nutshell.
Shabe: That’s really fascinating…that’s about the same time, about 1999 when mine
started. (I discuss what happened to me)
Walker: Let me share with you a real irony to the wind ensemble director story. The guy who
basically scared the pants off me. His wife was a really fine horn player and when I was a
freshman, before I even had any problems, she blew out her chops…this was way back when
nobody knew about dystonia. The point you’re making now, what I’m hearing you say, is this
notion of there being this deep rooted trauma. That is a reality and those kind of things are
contributing. So what we have to figure out is, how do you use that as part of the rehabilitation
process. So I want to put you onto a book that I’m reading right now that I haven’t finished by
Dr. John Sarno…”The Mind Body Prescription, Healing the Body, Healing the Pain.” I’ve done
research on him, he’s the real deal. His philosophy is that you have to go through
psychotherapy, you have to get to the root of the problem. You have some sort of epiphany and,
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pa-ching! You’re cured. That’s the part that I’m not at all buying yet. I’m reading with sort of a
jaundiced eye as I sort through it.
Shabe: (discuss my experiences in LA) I met George Jones last summer and he said he
went through EMDR. Do you have any experience with that?
Walker: No, nothing.
Shabe: They basically use eye movement…they bring up traumas and use eye movement
and sounds to…the theory is somehow it rewires your brain to get past the traumas.
Walker: The other Sarno book that I haven’t read is “The Divided Mind.” When our
intervention study next spring. It’s a big study. One of the big questions that I have that Eckart
(Altenmüller) going to have to help me figure out is, “are we going to go after this component.
Is our intervention going to involve a multifaceted approach or are we going to zero in on
feedback?”
Shabe: It seems that the scientists want to be say one thing, and the practitioners have
another and nobody wants to meet in the middle. Why can’t we use all of these
techniques?
Walker: Well, that is my contention. In fact, he and I had a discussion about this 5 years ago, I
did a sabbatical at his clinic in Hannover. And we had this long discussion one day. And I asked
him, “Who is going to do the intervention study where we just go after everything?” And he
said, “You will.” We’re collaborating. He’s going to help me see this through. He’s a good
scientist and a very good clinician. What we end up doing next spring, it could be really
meaningful. What we’re trying to do is find 4 or 5 subjects in Germany who have embouchure
dystonia, who are willing to adhere to an unbelievably rigorous protocol. Absolutely no
performances, not allowed to do certain kinds of playing. It will all be building from the ground
up…production concepts to begin with, and visual feedback. Just trying to rewire/retrain.
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One of the other things about my understanding from my own situation and research is
informed…I got to the point where I was doing pretty good. I could play certain things, hymn
tunes in church. Very basic, in a comfortable range. Just thinking about melody and sound. I
could change keys without problems, etc. It got so good that I thought that I’d try some Strauss.
And in an instant, everything comes back. All of the bad motor behavior patterns. So this also is
a big factor to me as I think about people who want to rehabilitate. What’s going to be an
acceptable level of recovery for you? Are you really going to try to be in the orchestra again?
Because now all of those familiar sensory signals, emotional signals, are there. They’re in you.
You’ll have to overcome them. I’m not sure that’s possible. I agree with you about prevention.
What can we do to prevent these kind of traumas from taking place? In terms of how we
teach/practice…
Shabe: The research that I’ve done, especially being in the area of education, is that the
idea of brute repetition is a lot more damaging than it is helpful for most people.
Walker: Yeah, when you think about it, right? If you look at incidents of embouchure dystonia
in jazz musicians vs. classical, there’s a big difference. What’s the difference? The difference is
Chuck Mangione misses a note in Feels So Good, and can just say that he meant to do that. And
it doesn’t matter. Do we teach improvisation with young kids growing up? Do we let them free
associate music and just play? No. We tell them, “It goes like this…exactly.”
Sarah Willis from the Berlin Phil said to me, “But Joseph, we have to play the correct
notes. That is a problem, you know. You can’t just play whatever you want.” And I said,
“Yeah, but when you’re growing up and you’re learning what it is to be a musician, to play, how
can you teach in such a way that you don’t build these barriers, and these experiences that can be
so traumatic?”
Shabe: I’m curious about your personal experience…did you know anything about this
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condition before it happened to you?
Walker: No…I had a horn student here, very good player, and she sent me a little cartoon, and it
said, “Dr. Walker, I think you have dystonia.” And I asked, “What’s dystonia?” What are you
talking about? I made light of it, and then I started reading about it. And I realized that it was a
thing.
Shabe: And when they first gave you the diagnosis and told you to put the horn away,
where did you go from there? Did you say “fine” or “I’m gonna beat this?”
Walker: Oh, that was my attitude. My first response was to take a cross-country bike trip with
my wife. That was my first response. It was terrifically therapeutic. Then I had to come back
and officially resign from the orchestra. I kept teaching horn, interestingly enough, which was
actually better, but my initial response was to take some time off. But then, completely to
understand it and fix it.
Shabe: You’ve been doing this for a long time. What keeps you going as far as saying I
can…that you don’t just want to give up?
Walker: Let me be clear. I’ve given up on horn playing. Definitely. Do you know who Jeff
Nelson is? Horn player in the Canadian Brass for about 6 years, he went to Indiana and he’s now
teaching there. But he’s just rejoined the CB so he’s playing with them again. His big thing is
performance anxiety. He does “Fearless Performance” workshops. He and I got together about
4 years ago, and…Jeff is very unique. But he’s also extremely gifted. He got me thinking about
what my goals are. What do I want to be? I wanted him to listen to a recording of me playing
the Strauss 1. He said, “I don’t want to hear what you used to play like. Who are you now?” So
for me, honestly, I have no aspirations of going back and playing in a group at all. I’d love to
find that if I become a subject in this intervention that I’m doing, I’d love to see if I can get back
to making a beautiful sound on the horn.
164
But what keeps me going is basically by God’s grace entirely, I stumbled onto this
technology in Germany which has opened the world to me. The research that we’re doing is
cutting edge, brand new, never been done before. You can’t make any mistakes, almost. It’s just
like, “Let’s look at this. Wow, let’s talk about it. Now let’s look at this…” So all of the things
we’re doing, there’s 2 aspects that keep me going. One is, we’re learning things about brass
pedagogy that people have never known before which are meaningful and helpful. You should
read Doug Yeo’s stuff. Another name, Matthias Heyne. He’s a trombone player who has tongue
stopper’s dystonia. He can’t start notes. He’s a brilliant physicist. Doing a post-doc at Boston
University and we just started collaborating. I’m positioning for him to take over for me when I
retire because he’s great.
What keeps me going pedagogically is being able to help people play more efficiently.
Secondly, this little shimmer of hope about dystonia. Number one, describing it carefully.
Showing involvement of the tongue. Showing the difference between dystonics and non-
dystonic players. And this really hopeful thread, might there be something in these feedback
studies that can help us actually retrain some people. Those three things-pedagogy, describing
dystonia, potential interventions. That keeps me going…absolutely.
Shabe: George talked about redefining himself. The instrument wasn’t his entire life
anymore. Perhaps by the grace of God dystonia has put us where we are supposed to be.
Walker: Eric Overholt and I have become good friends recently. He’s redefined himself. This
is a very important term. As a Christian, there is the thought of God directing our steps and that
is super motivating to me. I look at this as God taking something which was an immense
tragedy, and turning it into something which an amazing gift. I still weep when I hear something
that I used to play and wish I could play it again. But I think redefining yourself is important.
Eric has become a great youth pastor in an Episcopal Church. He’s doing great things. When I
165
first met him in LA he was struggling to come back. My impression was that it wasn’t going to
happen, but I never said that to him. But he redefined himself…if you can turn the lemons into
lemonade, that’s great. And I think your approach of studying this and doing your dissertation
on it is something to that end. Who knows what your place will be.
Shabe: I’ve had this second career since I put the horn away.
Walker: What really keeps me going is the grace of God from a spiritual perspective. I rarely
get to talk about that. I have had conversations with Eckart about it. I look at it as an
opportunity. Here’s God using this vessel that’s wounded and imperfect, to glorify Him. Put
that in your dissertation. It’s very real.
Shabe: You became a Kinesiologist long before any of this happened, correct? After you
stopped playing horn at (college)?
Walker: This personifies me as a HS student…in the Spring of ’75 my basketball team we were
in the provincial championships in Calgary. We won the tournament on Friday night. On
Saturday morning I was in the Calgary Auditorium with the Calgary Symphony playing low horn
in Mahler 6. Athletics and horn, that was me. It was the natural thing to do. If the horn isn’t
there, go to this other thing you’re good at. The outgrowth of that was to get into science and
how the body works. It was a natural switch to Kinesiology. And now they’re totally melded
again.
Shabe: When you first start experiencing the symptoms, did you feel like the eyes of
everyone were on you?
Walker: I suspected they were. Nobody heard anything. I asked my second horn player if he
heard something. Or I might ask him to take a little part for me that I was having trouble with. I
was worried about it, but my impression was that nobody noticed. Until, I had a lesson with a
student one day, and that’s when things were really going south, and he noticed. And I went,
166
“Oh, boy…”
Shabe: What are your thoughts about neuroplasticity?
Walker: I’m completely convinced of its veracity. I think it’s a huge issue. We can
maladaptively plasticize, and we can positively plasticize. Though I think there are definite age
barriers that I’ve passed. I wonder if I become a subject in this project next year if I have the
physiological ability to do it.
Shabe: So if I remember correctly, you said at the beginning that going back to zero and
retraining is the way to fight this.
Walker: I think that is completely key.
Shabe: That’s what I’ve been finding. Forget what you used to be, you have to be a new
you.
Walker: Yep.
Shabe: It seems that those who have recovered have used that approach.
Walker: Well, I’d like to talk to those people who have recovered. I’m not convinced that they
all had it….as a sidebar to this, Glen Estrin is a great friend and supporter of the work we’re
doing, but he used to frustrate the heck out of me. I would tell him about all the things I was
trying to do to fix my playing. He would say, “Joseph, we had our time in the sun. I got my
Grammys, you played your gig. We gotta move on, man. Leave it behind, don't try to fight it
anymore.” His way of looking at things. I don’t know.
He and Stephen Frucht ran a conference in NYC 4 years ago, where they brought in a couple of
people who claimed recovery. And their whole mantra was that you can fix this. One of them
was a famous guitar player, but he learned to play with the other hand. One of the tuba players
there, famous tuba player who has dystonia, said, “Well, taking that example, the options on tuba
are to either blow in the other end of the tuba or put the tuba in another part of my body.” There
167
are some people who have claimed to have recovered. (guy with a dental splint…sensory trick)
Which is great if you can find something that works. For my problem, I’ve tried stuffing things
in my lips or having someone behind me touching my head. But that’s not really practical.
End of Transcript
Abstract (if available)
Abstract
The world of the performing musician is one of high pressure that comes from the expected high standards they have to live up to and that they expect from themselves. The pressure that musicians put themselves under can manifest itself in physical problems such as focal dystonia. Knowledge of the contributing factors and potential rehabilitation strategies cannot only give players hope for recovery, but also the information to prevent it from happening in the first place. This dissertation presents a multiple case study of two performing brass musicians who developed focal dystonia of the embouchure, also known as embouchure dystonia, combined with an autoethnography of the author’s experience of battling embouchure dystonia, and our attempts at recovery. Extensive research into the current state of focal dystonia research was done to establish a base of knowledge. That knowledge was used to develop interview questions for the two participants and interpret the findings of the qualitative data collected. The research knowledge, as well as the qualitative data from the case studies, was also used to interpret the author’s experience. The author determined that behavioral, environmental, and psychological factors were of prime importance in the subjects’ development of focal dystonia, and that modifications of those factors are essential for the best chance at recovery.
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Creator
Shabe, Douglas Joseph
(author)
Core Title
Recovery from task specific embouchure dystonia in brass players: a multiple case study
School
Thornton School of Music
Degree
Doctor of Musical Arts
Degree Program
Music Education
Publication Date
04/25/2019
Defense Date
03/07/2019
Publisher
University of Southern California
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Tag
embouchure dystonia,focal dystonia,Music Education,Music Teaching and Learning,OAI-PMH Harvest
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), Helfter, Susan (
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), Ilari, Beatriz (
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embouchure dystonia
focal dystonia