Musician’s Focal Dystonia – an incurable curse? What you need to know in a nutshell Part I.
by Anna Détári. October 5th, 2020.
Exactly 10 years ago, after a string of contemporary solo recitals, I closed my flute case and decided I needed a holiday. The last two concerts didn’t go really well, my embouchure felt strange, and I somehow lost control over a few notes. This had never happened before, but I was overworked to the point of a breakdown and explained it with my exhaustion. So, I did something which I have never really allowed myself to do before: I left my flute at home when I went for a holiday. A week later, when I got back and wanted to start to practice for my concerts in the fall, something very strange happened.
I couldn’t produce a sound. At all.
My lips were curling into a strange position, my jaw tensed up, and the harder I tried, the more my teeth clenched. I found it very disturbing, but I could move my lips in all directions, I could make grimaces, speak without a problem, and after checking my face and teeth in the mirror, I concluded that everything seemed normal. So, I tried playing again the next day. The same thing happened. And again, on the next day. And on every single day in the following week, and following months, and the following years. After 16 years of active practice, two performance degrees, countless recitals, I found myself not being able to not make a sound.
What happened?
I’m not going into too much detail about the misery of the next years, but at least I have to say this: after four years of experimenting and retraining, I regained my former level of playing and gave my first solo recital in 2014. What I didn’t know for most of this journey was that the problem has a name - Musician’s Focal Dystonia (MFD for short) – and it is not uncommon at all. 1-2% of accomplished musicians struggle with it, mostly classical players, but there are many jazz and rock musicians as well. What I experienced in my embouchure, losing the control, spasms, tremor, tension, inability to create the movement I needed, can manifest itself in the fingers, wrists, forearms, shoulders, vocal cords, even the feet. In short, basically, any body part can be affected which helps us to create a sound on the instrument (1).
After coaching many musicians over the past five years, I also had to realise that my brutal onset - losing the ability completely in a week or so - is not typical at all. Most musicians start to experience stiffness, loss of control in certain technical aspects, deteriorating sound, quality, and speed, which is easy to explain away as a technical issue. The fact that the condition is highly task-specific (2), in other words, in only manifests itself on the instrument, reinforces the idea of us ‘not being talented enough’ and ‘not being good enough’, which leads to the usual musicians’ remedy: increased practice. Unfortunately, repeating the deteriorating movements only strengthens the symptoms instead of fixing them, and in some cases, they can spread to other tasks as well, like typing, holding objects, or drinking from a cup.
Most of us never hear about this problem until we experience it, or witness someone struggling with it. Musicians try to avoid talking about it, because it is considered to be incurable by medical professionals, making it a death sentence for a musician’s career (3). This almost superstitious fear around it prevents open communication, which leads to lack of awareness, understanding, and prevention. As a result, people do not get help in time, and many keep their symptoms secret until it spirals out of control, fearing the judgement of others, and losing their jobs and reputation. Many self-diagnose and try to fix it themselves, which, without the specific knowledge needed, rarely works. Some look for help, but unfortunately, there are many individuals out there who sell false hope for a lot of money, and from the sufferers’ perspective, it is hard to tell who to turn to.
Therefore, in this article, I try to summarise everything you need to know about the condition and offer advice for those who might have it. Apart from my personal experience and successful recovery, I’ve been coaching musicians with MFD for over five years now, and I completed an MSc degree in Performance Science at the Royal College of Music studying the condition. I’m currently in my last year of my PhD studies, building up a new framework for understanding and treating MFD. I argue that preventing, diagnosing, and treating MFD needs an interdisciplinary perspective, and including musicians at each step is crucial for creating reliable treatment strategies.
What is it?
MFD is a task-specific, neurological movement disorder (1). It differs from tendonitis, performance-related pain, and overuse syndrome because it is painless, and the muscles, tendons, and even the nerves controlling them seem to be fully functional under rigorous examination. The problem stems from the brain itself (4-6).
This doesn’t mean, however, that if pain is present, it cannot be MFD. Most of us experiencing this shocking and unbelievably strange phenomenon start forcing the movement or find certain compensatory ways to reach our goal and make music. These can include changing the posture of the hand, the wrist, the head, overusing other fingers, or overextend them, to get them out of the way, pressing the mouthpiece harder onto our lips, or forcing our heads and necks into strange positions. All of these strategies can lead to pain, and they can destabilise the system further. There are some reported cases, where the MFD onset happened as a result of playing with pain for too long, not allowing the body to heal, or simply carrying on with playing after an unrelated injury. What happens here is that the body tries to protect the place where it feels the most pain and modifies the movement patterns. If you think about how quickly you change simple movements, like grabbing a cup after cutting your finger, this makes a lot of sense. Co-morbid pain can often lead to misdiagnosis and unhelpful treatments.
The medical research and treatment strategies
While the condition has been around for at least two centuries - Robert Schumann being the first post-humus diagnosed case (7) - medical professionals started studying it intensely only in the past few decades. The bulk of the studies are looking at heredity factors (8), certain genetic makeup which makes an individual more susceptible, maladaptive neuroplasticity (the ability of the brain to reorganise connections) (6), and problems with the inhibition processes (9). The latter refers to one of the neural network’s functions which stops unnecessary movements while activating the intended task. There are interesting findings in these fields: scientists identified certain genes which can make someone more vulnerable to MFD, discovered that the neural representations of certain body parts might over-develop and overlap, giving out confusing signals, and there are inhibition problems on different levels of the brain, the brainstem and the spinal cord (4-9). I have written a blog article on the topic if you want more details here.
Unfortunately, in spite of this detailed research, the pathophysiology (the processes associated with the disorder) is poorly understood, most of the theories cannot explain the task-specific nature of the condition (10), so from a medical viewpoint, it is considered to be incurable. The medical treatments are mostly symptomatic (more of this later), and it appears that we are no closer to solving the problems than 200 years ago.
However, there are people who recovered completely. Individual musicians from all over the world showed that while MFD is difficult to overcome, it is possible. Many returned to their careers after retraining their technique, and some even offer coaching sessions to others. This is undoubtedly a long and complex journey, therefore, I would like to walk you through it in two parts. In this article, I will be focusing on describing the official medical treatments, and touch on the behavioural therapies offered by recovered musicians. In the following piece, I will point out the limitations of the current approach, and discuss less conventional methods, and non-motor contributing factors. At the end of each of the article, you will find my top 10 tips to start overcoming MFD.
Do I have it?
With a quite vague diagnostic criteria, this is a question is hard to answer sometimes. There are even articles written on how challenging the diagnosis is, and how often it gets misdiagnosed (11), but I will offer some pointers to answer this question.
Firstly, it is extremely important to rule out other, more widespread and serious neurological conditions, such as Multiplex Sclerosis, or Parkinson disease. With more severe symptoms, especially if they are experienced away from the instrument as well, a neurological test is a must.
Task-specific symptoms are more likely to be MFD, even if they start spreading to other similar activities. As an example, pianists with finger dystonia often start to have difficulty with typing. The symptoms vary hugely, some are only a weird sensation is one finger, some are full-blown spasms or twitching, and the onset can be sudden or gradual, but there are some tell-tale characteristics.
If you feel that you are losing control over your body when playing, if your fingers, wrists, shoulders, tongue or facial muscles are creating involuntary movements, it is quite likely that you have MFD. Similarly, losing certain aspects of your technique, such as difficulty playing in a certain range, tempo, articulation can be a sign. Experiencing stiffness, tension, or unresponsiveness from a body part, or the sensation that your body suddenly ‘forgot’ how to play can mean that the problem is present. I collected the most typical symptoms in the following table, but there are many other unusual reactions as well.
Strings
Left hand and arm
One frequent problem is the little finger and/or ring finger curling in (in extreme cases even under the instrument) or sticking out. Further issues can happen in the thumb: either opening up and providing no support, or clenching the instrument, losing flexibility. The left arm can become overactive or rigid and tense, and the violinists and violists can experience tremors and tension in their shoulders and neck when trying to hold the instrument. This can also be mixed with jaw issues or TMJ (Temporomandibular joint disorder), which affects the joint connecting the jaw to the skull.
Right hand and arm
The little finger and/or ring finger curling can affect the bow, often lifting it off from the strings, Additionally, the thumb can clench, squeezing the bow too hard, making fine motor control hard or impossible, usually resulting in impairment in playing separated notes or pushing the bow too hard on the strings.
Winds
Hands and arms
Little finger and ring finger problems are the most prevalent, losing fine motor control, numb feeling in the fingers, or the opposite, the finger is squeezing the keys and become hard to move or completely immobile. Most flutists have left hand issues, other winds generally struggle with the right hand. The right-hand problems can manifest in holding the instrument as well, mostly in the thumb.
Embouchure
There are a wide variety of problems which can happen in the embouchure, but there are two main types: visibly over-active movement patterns (like one corner of the mouth is lifting up), or under-activation (not being able to hold the embouchure in place).
Very often, this is accompanied by jaw tension or TMJ, and involuntary tongue movement, which often manifest itself as an articulation problem (e.g. inability to double tongue or start the first note).
Brass
Embouchure
Brass players most often have problems with the embouchure, starting with ‘first note anxiety’, the inability to start the first note with the tongue. Jaw tension, inability to play in certain ranges are typical.
Usually, over-active patterns lead to problems with lover range, and under-activation results in the loss of the high range.
Hands and arms
Although it is quite typical to have problems with the embouchure as a brass player, there are many trombone players with stiffness or tension in the shoulders, which limits their ability to change pitches accurately and quickly.
Piano
According to the literature, pianists are very vulnerable to the condition, and their dystonic patterns are diverse. Problems with curling little and ring finger are frequent, the thumb can become stiff, sticking out, or curling in. Sometimes, due to the under-activation of the rest of the hand, the middle finger sticks out to help lifting the structure (Robert Schumann suffered from this particular pattern and wrote several pieces which does not use the middle finger at all.)
Guitar
Left hand
MFD in guitarist also seem more frequent than in other instruments. The left-hand problems can include lost control in one or several fingers – again, the little finger and ring finger are often affected – squeezing the fretting board with too much force, difficulty with raising the finger, or with specific finger combinations.
Right hand
There are many different dystonic patterns in the right hand of guitarists, including over-active or under-active muscles. Using the little and ring finger is often problematic, but an over-extending thumb can also upset the fluency of the movement. I have seen several guitarists with the index or middle finger sticking out.
Percussion
Due to the many different instruments percussionists play, there can be many different patterns. This is the group where I see most non-classical players. Many problems stem from the action holding the drumstick, some fingers can create extreme pressure, in some cases even turning the wrist or the arm. Others lose their grip while playing, struggling with holding on the stick.
Percussions being played by bare hands, can produce different patterns, most often trouble with straightening the fingers, or losing the flexibility of the wrist.
I’ve worked with people who had the dystonic pattern in their foot when using pedals on a drumkit, especially rock or metal drummers with demanding material.
Voice
There are certain muscular movement patterns in the langreal muscles which can create hoarseness in the voice, or difficulty to ‘get the sound out’. However, singer’s dystonia is a little bit different, because it can affect non-musicians as well as a speech disorder. There are some researchers who claim that it is markedly different, but more research is needed to understand this particular disorder more. I don’t have any experience with singer’s dystonia; therefore, I can’t provide examples or more information here.
These patterns can stand on their own or many of them creating a more complex dystonic pattern. In addition to this, there are many atypical symptoms as well – as an example, I worked with wind players experiencing the symptoms exclusively in their necks, or pianists with upper arm and shoulder problems.
As a music psychologist, I obviously cannot officially diagnose my clients, but at the same time, that is not my priority. The diagnosis can often generate fear and anxiety due to the rigid thinking around the condition, which does not help the rehabilitation. (There are some who might feel relief if they get a diagnosis, if that’s the case, I advise them to seek out a neurologist.) I feel that putting a label on the issue creates the illusion that now we understand it, which is far from the truth. Naming it will not significantly improve the chances of recovery. A well-chosen holistic approach will help both MFD and severe recurring playing issues, which – in my view – are on the same spectrum anyway.
Medical diagnosis and treatment
If you receive a diagnosis from a neurologist, you are likely to hear that the condition is not curable, which can be extremely distressing. It is also hard to prepare for receiving such a harsh verdict, so I suggest that you keep in mind that it would be unprofessional from a neurologist to state otherwise unless they can provide a reliable cure. However, I cannot stress the fact enough that there are recovered musicians, who used a much broader and holistic approach, aided by their instrumental expertise to regain their ability. These approaches are very complex and have many individual elements, which are not researched and tested scientifically, therefore, officially, medical professionals cannot advise you to take them.
However, neurologist do offer treatments following the diagnosis, and you are likely to be directed towards one of three strategies: Botox (Botulinum Toxin) injections, oral medication, or behavioural retraining.
Botox is a symptomatic treatment since it impacts the muscle, not the neural network supporting it, in other words, it is not a neuro-modulator. It is one of the most lethal toxins known, and when injected into a muscle, it paralyses it, stopping the involuntary movement. On the other hand, it will stop all movements generated by that muscle - the patient is simply not able to use it at all for 3-4 months until the effect of the toxin wears off.
Apart from the obvious problem, that at its best, this method only creates temporary relief from the over-activation, there are a few other issues with this treatment. Firstly, the body mechanics of playing an instrument is an extremely complex movement pattern, and it requires all the muscles in the body part in question. In a healthy technique, all the facial or hand muscles take part in performing the movement. While ‘taking out’ the misbehaving one seems like a straightforward solution, it places extra workload on other neighbouring muscles, which are now forced to move in a different way than before, creating a new movement pattern, which differs from the original instrumental technique which you are trying to regain. When the toxin wears off, and the overactive muscle is ‘back online’, it creates further confusion in the system.
Secondly, the doctor needs to decide which muscle to target, which is often not an easy task. The symptoms often form a complex dystonic pattern, including underactive muscles, ones which are overreacting, and some which start to perform compensatory movements, to keep some sort of balance in the muscular structure, or simply to get the task done to a certain extent. One study looking at the injections in non-task specific dystonias showed that only 37% of them reach the target muscle (12). In other words, finding the ‘right’ muscle to paralyse is challenging and fails often.
Thirdly, once injected, the patient might experience difficulty with everyday tasks – the task-specific condition which they had is suddenly upgraded to a non-task specific one. I had clients who had difficulty holding a cup due to the overdosed Botox injection. It is not hard to imagine what that can do to instrumental practice. Also, in order to keep the muscle ‘muted’ the injection has to be repeated, which leads to another under-researched problem. While doctors were convincing their patients for decades that after 3-4 months, the effect of the injection won’t be detectable, a recent study shows that repeated injections cause muscle atrophy, i.e. loss of muscle tissue (13).
I do not argue that in certain life-situations a ‘quick fix’ might be the only option, but it is important to keep in mind, that the injection will only stop one dystonic or compensatory movement, it will not magically give back the full ability. At its best, Botox is only a short-term help, and can have negative implications to other approaches later.
The second frequently offered option is oral medication. What you need to know about these that there is no drug developed specifically for MFD. It seems like an impossible task due to the unknown pathophysiology and the wide variety of symptoms. Trihexyphenidyl – one of the drugs most often used (in Europe at least) – is a Parkinson’s disease medication which is used to improve movement control. People taking it report very little improvement and severe side effects, such as dry mouth, dizziness, memory impairment, depression, and impaired vision (14).
The third, most recently available option is participation is behavioural therapies. This umbrella term covers many different approaches. For finger dystonia, playing with splints to immobilise overactive fingers is one widely used technique, there are a few based on changing attentional focus, or ‘retuning’ the brain’s responses to certain sensory and motor stimuli. In general, all of these approaches are based on the brain’s ability to create new neuro-pathways or reactivate the pre-onset ones and abandon dystonic ones. These approaches include the musician in the process, and they work more or less as an individual instrumental lesson: you are given certain exercises to practice, and these are monitored in the following session. Even the medical literature admits that these are not only more effective, but also have no side-effects, and they aim to rehabilitate the playing rather than treating the symptoms (1,14).
They are also delivered by a wide range of people: some are doctors, some are working with different somatic approaches, such as Alexander Technique or Feldenkrais, and some are musicians who themselves recovered from the condition and teach based on their own experiences. Based on my own interview study – I talked to 14 practitioners about their methods – I would say that working with a recovered musician has many advantages. Firstly, they have a clear understanding of the instrumental technique, in other words, they know the movements they are trying to retrain from experience. Also, they understand what it feels like to be almost crippled this way – all the frustration, the anger, the impatience, and last but not least, the physical sensation of not being able to move the body as you want to. This being said, there are some fabulous doctors as well out there with in-depth knowledge who can be really helpful.
I believe that behavioural therapies are the way forward in MFD rehabilitation. It is a very complex topic, and requires a more holistic approach, time and care, understanding of the instrumental technique, posture, healthy motion, and a basic understanding of neuroscience and pedagogical theories, so I will go into detail in the second half of this article.
Meanwhile, let me give a few tips to everyone who struggles with undiagnosed, weird performance-related problems or MFD.
Top 10 tips:
1. Never force your body to perform movements! If you come from frustration and anger, it will only make matters worse, because these psychological states create physiological responses, such as increased muscular tension.
2. Approach the problem carefully! Reduce the tempo, play in a more comfortable range, play legato instead of articulating – change the material so it fits your needs, not the other way around.
3. Play simple things to reinforce what works instead of trying what does not. This is one of the key pieces: the more repetitions you put into something, the stronger the supporting neural network’s connections will get. If you keep running into the same problem and repeat it many times to force a better outcome, essentially, you’re practising the issue (or the dystonic pattern). Spend time on easy and enjoyable material!
4. Leave sufficient time to warm up – including warm-ups away from the instrument. Don’t just open the case and go for it. There are plenty of available resources on gentle warm-ups. A muscle with a good blood circulation will be less rigid and will react better, producing fewer symptoms.
5. Try to get as much sleep as you can and steer away from stressful situations as much, it’s possible.
6. Avoid drinking coffee, tea, and alcohol; these stimulate your nervous system, make you more agitated and might lead to more severe symptoms.
7. Return to a repertoire which you played with ease and joy and have good memories of it.
8. If you have more severe symptoms, or you also experience them away from the instrument, visit a neurologist to rule out other conditions.
9. Talk about it. This might be hard, but choose a few people you can trust, and share your worries about your playing. Getting in touch with a therapist can be hugely helpful as well. It reduces the psychological pressure.
10. When you are thinking about getting help, research your options thoroughly. Read reviews, ask people who have tried certain services, ask questions.
References:
1. Jabusch H. Ch., & Altenmüller, E. (2006). Focal dystonia in musicians: from phenomenology to therapy. Advances in Cognitive Psychology, 2(2-3), 207-220.
2. Hofmann, A., Grossbach, M., Baur, V., Hermsdörfer, J., Altenmüller, E. (2015). Musician’s Dystonia is Highly Task Specific: No Strong Evidence for Everyday Fine Motor Deficits in Patients. Medical Problems of Performing Artists(Vol. 30).
3. Richardson S.P, Altenmüller E., Alter, K., Alterman R.L, Chen R., Frucht, S, Furuya, S, Jankovic, J., Jinnah, H.A, Kimberley, T.J, Lungu, C., Perlmutter J.S., Prudente, C.N, Hallett, M. Research priorities in limb and task-specific dystonias. Frontiers in Neurolology. 03 May 2017 | https://doi.org/10.3389/fneur.2017.00170
4. Sussman, J. (2015). Musician’s Dystonia. Practical Neurology, 15 (4), 243-243.
5. Haslinger, B., Altenmüller, E., Castrop, F., Zimmer, C. & Dresel, C. (2010). Sensorimotor overactivity as a pathophysiologic trait of embouchure dystonia. Neurology, 74(22), 1790-1797.
6. Elbert, T., Candia, V., Altenmüller, E., Rau, H., Sterr, A., Rockstroh,…Taub, E. (1998). Alteration of digital representations in somatosensory cortex in focal hand dystonia. Neuroreport, 9(16), 3571-3575.
7. Altenmüller, E. (2006). The end of the song? Robert Schumann’s focal dystonia. In: Eckhardt Altenmüller, Mario Wiesendanger, Jürg Kesselring (Eds.) Music, motor control and the brain. New York: Oxford University Press
8. Lohmann K, Schmidt A, Schillert A, Winkler, S, Albanese A, Baas F, Bentivoglio AR, Borngaber F, Bruggeman N, Defazio G, Del Sorbo F, Deuschl G, Edwards MJ, Gasser T, Gomez-Garre T, Graf J, Groen JL, Grunewald A, Hagenah J, Hemmelmann C, Jabusch HCh, Kaji R, Kasten M, Kawakami H, Kostic VS, Liguori M, Mir P, Munchau A, Ricchiuti F, Schreiber S, Siegesmund K, Svetel M, Tissen MAJ, Valente EM, Westenberger A, Zeuner KE, Zittel S, Altenmuller E, Ziegler A, Klein C. Genome-wide association study in musician’s dystonia: a risk variant at the arylsulfatase G locus? Mov Disord. 2014;29:921–927.
9. Ridding, M.C., Sheean, G., Rothwell, J.C., Inzelberg, R. & Kujirai, T. (1995). Changes in the balance between motor cortical excitation and inhibition in focal, task specific dystonia. Journal of Neurology, Neurosurgery, and Psychiatry, 59,493-498
10. Sadnicka, A., Kornysheva, K., Rothwell, J. C., & Edwards, M. J. (2018). A unifying motor control framework for task-specific dystonia. Nature Reviews Neurology,14(2), 116–124. https://doi.org/10.1038/nrneurol.2017.146
11. Rosset-Llobet, J., Candia, V., Fabregas i Molas, S., Rosinés i Cubells, D. D., Pascual-Leone, A. (2009). The challenge of diagnosing focal hand dystonia in musicians. European Journal of Neurology,16(7), 864-869.
12. Molloy F. M., Shill H. A., Kaelin–Lang A., Karp B. I. (2002). Accuracy of muscle localization without EMG: Implications for treatment of limb dystonia. Neurology, 58, 805-807.
13. Fortuna, R. Vaz, M.A.,Youssef, A.R., Longino, D. & Herzog, W.(2011). Changes in contractile properties of muscles receiving repeat injections of botulinum toxin (Botox). Journal of Biomechanics, 44(1), 39-44.
14. Altenmüller, E. & Jabusch, H.Ch. (2006). Focal dystonia in musicians: From phenomenology to therapy. Advances in Cognitive Psychology, 2(2-3), 207-220.
BIO
Anna Détári holds her Bachelor and first Master’s degree from flute performance from the Liszt Academy of Music, Budapest and the University of Pecs, Hungary. She took part in masterclasses with Aurele Nicolet, Andras Adorjan and Istvan Matuz. After graduation, she worked as a soloist, chamber musician and orchestral musician as well as a flute teacher and wind band conductor. She was the member of the Hungarian National Operetta Theatre’s orchestra for four years, and led a successful freelancing career, focusing primarily on contemporary music. She played the first performances of many solo flute and chamber pieces and took part in masterclasses led by Gyorgy Kurtag and Laszlo Sary.
In 2010 she suffered from Musician’s Focal Dystonia (MFD), which made her unable to play her instrument. After four years of experimenting, she managed to retrain herself returned to her musical career. Soon she started to help other MFD sufferers to regain their former ability. The experience turned her interest towards music psychology, and she wished to conduct in-depth research on the condition.
In 2017 she got accepted to the Royal College of Music (London, UK) and completed an MSc in Performance Psychology with distinction. She continued her research as a Ph.D. candidate at the University of York (UK), focusing on the role of psychological, environmental, and behavioural factors in the onset of MFD. She is interested in creating a new, holistic framework to understand the condition, including music educators in the process of rehabilitation and educating them on preventative strategies.
She is the winner of the University’s PhD Spotlight Competition in 2019 for communicating her research to lay audiences, her presentation won the ESCOM Best Contribution prize at the International Conference of Students in Systematic Musicology in the same year, and her research was awarded the Alice G. Brandfonbrener Young Investigator Award offered by the Performing Arts Medicine Association in 2020. She presented at international conferences, such as the 4th International Congress on Treatment of Dystonia, in Hannover, Germany, and the International Symposium on Performance Science, in Melbourne, Australia.
Anna’s research is funded by the Arts and Humanities Research Council of the United Kingdom and the Music Department at the University of York.
Since 2015, Anna also works as a coach for musicians who suffer from MFD and collaborates with other successful practices to aid musicians. Her rehabilitation strategies are based on her personal experience and scientific research. She is also interested in body mechanics and somatic approaches and currently is in training as a Timani Level 1 teacher.
You can find out more about Anna at https://www.musicians-focal-dystonia.com/