Musician's Focal Dystonia. Part 2: A Mere Neurological Disorder?
by Anna Detari. December 15, 2020.
Welcome back to the second part of my article about Musician’s Focal Dystonia (MFD)! Similarly to the first part, this will also include the state of the art in scientific research and my own personal recommendations. As you might remember, in the first part I talked about the widely available treatment options and some of the facts we know. If you missed it, you can find it here. In this part, I’m going continue by describing how behavioural therapies work and will venture on, into more controversial territory: the under-researched role of body mechanics and psychological distress in the onset and treatment of MFD.
What are behavioural therapies?
Behavioural therapies are essentially movement therapies, during which the patient takes different approaches to practice healthy playing movements while trying to avoid the symptoms. These are presented in the literature as something strikingly new and ground-breaking, but if we think about it, it is not more than some form of carefully modified instrumental practice. Every single musician with MFD goes through a ‘behavioural treatment’, because they keep on practising, approaching their problem in various ways, the only question is that if this practice is self-led or aided by an external practitioner.
Self-led approaches usually have very low success rates and there are many reasons for this. When a musician undergoes the experience of not being able to move their bodies as they want to, the usual response is either forceful (trying harder, repeat more times, using more muscular activity) or includes some form of modification (changing the instrument, the position of the body, placing plasters on the keys, wearing gloves etc).
Forcing a movement is never a good idea, it usually creates more tension in the system and leads to more severe symptoms in the end. This is not something you can power through.
The second option can also backfire. First, it can seem promising, especially in highly task-specific cases, but the initial success is usually achieved because as we make changes and play the instrument differently, the brain receives different sensory and motor feedback from the body. This results in avoiding the habitual, dystonic reaction. However, our brain is highly adaptable, therefore in most cases, the symptoms start to pop up in the new setting as well. In some cases, this little window of symptom-free playing can be used to start building up healthy movement, but very few musicians understand how to use it.
The other main reason for the rare success of self-led therapy is that in spite of decades of instrumental practise, we know very little of how we actually play the instrument. It is a highly complex and refined cooperation between the central and peripheral nervous system, joints, muscles, connective tissues etc., and once we start to master it, it becomes unconscious. Therefore, it is very hard to spot where the problem is, and what can we do to correct it. Additionally, we all have our playing habits, but the movements which ‘feel right’, are not necessarily correct. Changing these without external help is an enormous challenge because we are working against our own nervous system, so to speak, which automatically tries to create the familiar, well-practised movement patterns. Actively and consciously moving in a different way might make us feel weird, strange, even unsafe, and in the middle of the retraining, it is hard to tell whether this unfamiliarity means that we are moving in the right direction or ruining our ability even further.
The literature and ongoing practices
When it comes to aided behavioural therapies, the literature is scarce, especially if we compare it to the number of studies looking at the symptomatic Botox injections and oral medication.
Most of these pieces describe strategies for finger dystonias (1-4), some using splints to prevent involuntary movements or special exercises to avoid the symptoms. Slow and controlled practice, playing easy repertoire while consciously monitoring the affected body part seem to be the most important elements. To the best of my knowledge, there is no scholarly article published which describes a behavioural retraining strategy for embouchure dystonias, or other less prevalent problems, like issues with the shoulder, neck or feet.
All the published material comes from medical centres offering individual programs or doctors specialising in Musician’s Dystonia in various hospitals and research centres. It is hard to tell the exact success rates of these programs, but the general consensus seems to be that while improvement is possible, full recovery is rare.
However, there are many undocumented practices working with all kinds of dystonia. These are mostly led by musicians who recovered successfully and built various retraining programs based on their experiences. There is very little information available on what exactly happens in these individual sessions, or how well these coaches are doing in term of rehabilitating their patients. Also, these individuals differ greatly in their preparedness, approach, and experiences. On one end of the scale, you can find truly caring, and knowledgeable coaches who apart from using their own experiences, follow and use the latest scientific findings and continuously seek to improve their therapies, on the other end, unfortunately, there are some who are making false claims about their success with patients while understanding very little of the condition itself. As part of my PhD research, I talked to 14 practitioners to collect data on their strategies and observations of their clients, and I have written a piece about how a retraining session usually looks like here.
In conclusion, it seems that we have room for improvement, especially when it comes to scientific research on these therapies and documenting ongoing practices. While it is really hard to say anything concrete about how these are structured due to the huge variability between the individual cases, looking at the state of the art, I identified two main points which are probably the most severely neglected, yet, in my view, crucial to secure a full recovery. If you are struggling with the symptoms, these are two areas you can start working on immediately, they will not interfere with any other treatment you might be already receiving but can considerably improve the chances of recovery.
Body mechanics
Most of the literature focuses exclusively on the symptom itself – and you could say, that sounds right, doesn’t it? We have to address the problem, and that’s where the problem is!
Well, yes, and no.
A team of practitioners, including a neurologist, a hand surgeon, a paediatrician and a physiotherapist (5), report about their approach which they developed and refined while treating more than 700 patients. In this paper, they stress the importance of attending to the general body mechanics, posture, and proprioception (the body’s ability to refer to its own position in space). From the four main steps of their retraining program, three is dedicated to improving general body mechanics, strengthening muscles, and align the clients’ posture. My own data from my interview study with private practitioners shows that many use postural exercises in their programs, and I cannot agree more that it is indeed a cornerstone of the rehabilitation.
In order to understand why, we need to take a detour into the field of anatomy. Historically, the elements of the human body were studied in separation, identifying the main function of the muscles or the mechanics of how the joints worked. More recently, their interconnectedness through connective tissue draws more and more attention. The fascia, a fibrous tissue which wraps around all our organs, muscles, nerves, blood vessels, binding the elements flexibly together, plays a much greater role in movement than previously thought. Essentially, there are ‘muscle trains’ in our body, groups of muscles which are so deeply connected that one cannot move or change without having an impact on the other. This system enables the body to proportionally distribute the workload between joints, bones, and muscles. But what happens if due to a misaligned posture, the fascia gets ‘pulled’ too hard in some places, and are too ‘loose’ in others? The workload with which the body needs to deal with will be placed disproportionally onto a few key points, while others will not be positioned well enough to take part in the work. According to Dr Thomas W. Meyers, author of the book, Anatomy trains (6), this is the basis for most injuries.
Translating this to MFD, if we play for decades with a wrong, misaligned posture, that will have a lasting effect on the anatomical structure itself, and as a consequence, on how we use our fingers, shoulders, embouchure etc. A twitching finger might be a ‘learned’ downstream consequence of problems with the shoulder joint, or weakness in the back muscles, a trembling lip of a head posture or a misaligned jaw.
But MFD is a neurological problem, isn’t it? – I hear you say.
Yes, MFD is a condition which happens due to changes in the brain, most likely through neuroplasticity. But what informs neuroplasticity? The movement itself. In other words, the brain is going to create neural connections and networks based on the information and feedback it receives from the body. If the overall functioning is not ideal, we are learning and getting used to movements which are placing way too much stress on certain parts, often not feeling a slow deterioration. My own findings show that many musicians with MFD struggled with certain technical aspects of their playing well before the onset: a ‘lazy’ finger, a tense tongue, a lack of flexibility or speed in the arms. Interestingly, they often started to notice the first MFD symptoms while trying to improve said skill. This finding is also reinforced by a ground-breaking paper published in the Nature Reviews Neurology, which offers a new theory to describe the origins of MFD. In this paper, Anna Sadnicka and her colleagues, identify ‘unresolvable mismatch between the capacity of the motor system and the task requirements’ as a possible trigger (7. p.7).
The other main problem which comes with postural issues is altered or decreased proprioception. As mentioned before, proprioception is the brain’s ability to identify the body’s position in space. As an example, if you close your eyes, and someone moves your outstretched arm, you will be able to tell not only the direction of that movement but its speed and the exact position it was moved to. You can think about this as your inner GPS, which uses gravity and your connection to the ground as starting points. If your postural alignment is not ideal, this ‘picture’ in the brain can get fuzzy, and as a result, moving the body in space will – subconsciously – feel like driving in a heavy fog. There is a sense of uncertainty, and we cannot be sure of the outcome of the actions, which can completely undermine the entire retraining process. A recent study about locomotor (movement) disorders and proprioception published in the Nature Reviews Neurology stated that ‘it is more important to improve function than to correct isolated clinical signs’ (8, p781). In the words of one of my interviewees, a private practitioner: ‘It's global before it's specific. And that I believe is one of the biggest mistakes that educators make, that clinicians make, especially because of this specialization, that we all make.’
So how to work on our embodiment? There is a wide range of somatic approaches available, Timani, Alexander Technique, Feldenkrais and many others. Conscious slow movement of the entire body, getting a better sense of alignment, working on posture will all improve your proprioception, and this part of the rehabilitation needs to be treated as equally important as the exercises which target the symptoms themselves.
Psychological factors
Hippocrates once said: ‘It is more important to know what sort of person has the disease than to know what sort of disease the person has.’
This more than two and a half thousand-year-old wisdom from the figure traditionally regarded as the ‘father of medicine’ got somehow forgotten and dismissed as modern medicine developed. Currently, medicine is mostly governed by a reductionist view, assuming that any complex issue can be understood if divide it into small, measurable segments, and study those.
Undoubtedly, this approach led to a tremendous success, from vaccines to neurosurgery, and saved countless lives. However, as pointed out in the literature, when treating chronic illnesses, a more holistic approach, considering multiple triggering factors, including psychological traits is the way forward to effectively trait these patients (9).
However, the current research into MFD does not yet seem to follow these new suggestions, nor does it plan to do so in the future. A collaborative paper identifying the research priorities in focal limb dystonia still advises researchers to move forward with their studies examining botox injections and invasive and non-invasive brain surgeries (10), ignoring the growing evidence of the interconnectedness of neurological and psychological issues (11).
There are many reasons why researchers are reluctant to examine psychological problems in task-specific dystonia sufferers: firstly, the approach is viewed as outdated due to the fact that historically, the condition was treated as a type of ‘hysteria’. Also, most neurologists feel it is irrelevant because the reductionist classification tells them that this is a neurological condition, and they view their patients’ psychological distress as a less important, secondary reaction to the symptoms themselves. The question of whether certain psychological issues, such as anxiety could have been present before the onset, maybe even as a contributor is largely dismissed, there are only four published papers on the topic (12-15). Musicians with MFD, on the other hand, don’t want to hear about the topic because the word ‘psychological’ spells out in their head as ‘it’s your fault’, ‘it’s all in your head’, ‘you’re crazy’.
This sharp distinction between neurology and psychiatry is not always helpful, especially when we are trying to understand a task-specific movement disorder. After all, our emotions, cognitions, and psychological reactions are created and governed by the same system which controls movement, regulates the work of our organs: our nervous system. And we have only one of that. Separating the two fields is artificial, and there is rapidly growing amount of evidence is presented to show that in many ways, they are inseparable.
More and more papers are written on how conditions which were classified as ‘neurological’ are often accompanied by psychological issues (16), and how ‘psychological’ conditions, such as depression, can create lasting structural changes in the brain (11), and there are regions in the brain which seem to be responsible for both movement and emotion (17). Some researchers even suggested merging the two fields and call them ‘disorders of the central nervous system’ (11). I have written a long piece about this here.
In my view, psychological distress is part – maybe even a trigger – of the condition and has further implications on the rehabilitation. Attending to these non-motor symptoms, such as anxiety, depression, and other mental health issues is equally important than working on the body itself. Why? Because how we feel will have a direct impact on the movements we are performing. Just imagine the simple act of walking. How are you going to do it when you are pacing up and down while waiting for a job interview? How would that feel comparted to strolling in the park on a Sunday afternoon? Let’s just imagine that even if the movement itself is similar, it will have a hugely different quality to it. Using this example, let’s imagine fixing a trembling lip or a spasming finger while exploding with anxiety versus in a calm mindset.
Obviously, we need to be grounded, centred, focused, and calm when we work on the issue to be successful with our practice or therapy. Achieving this mindset can be extremely challenging, given the amount of distress, feelings of loss, anger, self-blame we might be feeling. Therefore, it is crucial to start training our mindset, similarly to our body and to start it away from the instrument. Some of this work can be done within somatic approaches, Feldenkrais, Alexander Technique, yoga, Thai Chi, Timani, all have elements which impact cognition, emotions, and our mental health. Breathing practices, like Pranayama, meditation in any form can be extremely helpful. Using the help of a counsellor can be greatly beneficial. There are many different great approaches out there, but my personal favourite is Internal Family Systems therapy (IFS), which greatly helped me to build self-compassion.
The main takeaway message here, that this is a complex issue, calling for a complex treatment strategy. We cannot look at the symptom in isolation, neither on a physical nor on a psychological level. And it takes, time, often more than we are willing to give in the first place. But on the bright side – and I can speak for many of my clients as much as for myself – this journey towards embodiment, deeper understanding of our relationship to music and the instrument, clarity on healthy instrumental technique, developing patience and self-compassion, improving mental health does much-much more at the end than simply helping us to get rid of the symptom. It leads to an improved quality of life as a person and as a musician.
Top tips:
1. Consider improving your general mental and physical health as important as instrumental practice and rehabilitation strategies.
2. Move! If you haven’t done much before, start with light exercises, gentle walks or restorative yoga. If you already work out in some form, make it frequent and enjoyable.
3. Take a few lessons with a Timani, Alexander Technique, or Feldenkrais Method practitioner to understand how to improve your posture and proprioception. Many practitioners work online these days!
4. Start a meditation or contemplation practice - 15-20 minutes of undisturbed time with yourself, no music, no devices, just staying with your thoughts. Alternatively, you can try out a meditation app. For beginners, I can recommend Headspace, for those who already have a practice, I suggest having a look at Waking Up.
5. Start a simple breathing practice – the free Breathing App can support you with that. You can listen to the founder, the famous yoga teacher Eddie Stern talk about it here: https://www.youtube.com/watch?v=xXpsoGHnEiU
6. If it is possible, find a therapist or counsellor to talk to. Going through this experience can be extremely hard, and we need to acknowledge that. A professional can help greatly to support you throughout the process.
7. Do your research! There are amazing videos online for free on many mental health topics. Learn new things and get excited! Self-compassion, mindfulness, exercise, posture, nutrition - there are so many different ways you can support yourself!
8. Keep some form of a diary, follow the improvement in your retraining and in your physical and mental health. The progress is often slow, and recording it will help you to get a better picture of the overall process.
References:
1. Candia, V., Wienbruch, Ch., Elbert, T., Rockstroh, B. & Ray, W. (2003). Effective behavioural treatment of focal hand dystonia in musicians alters somatosensory cortical organization. Proceedings of the National Academy of Sciences of the United States of America, 100(13), 7942-7946.
2. Candia, V., Rosset-Llobet, J., Elbert, T. & Pascual-Leone, A. (2005). Changing the brain through therapy for musicians' hand dystonia. Annals New York Academy of Sciences, 1060, 335-342.
3. Vugt, F.T. van, Boullet, L, Jabusch, H.C. & Altenmuller, E. (2014). Musician’s dystonia in pianists: long-term evaluation of retraining and other therapies. Parkinsonism &Related Disorders, 20(1), 8-12.
4. Berque, P., Gray, H. Harkness, C. & McFadyen, A. (2013). A combination of constraint induced therapy and motor control retraining in the treatment of focal hand dystonia in musicians. Medical Problems of Performing Artists, 25(4), 149-153.
5. Tubiana, R. (2003). Prolonged Neuromuscular Rehabilitation for Musician’s Focal Dystonia. Medical Problems of Performing Artists, 18(4), 166-169.
6. Thomas W. Meyers, Anatomy trains
7. 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
8. Dietz, V. (2002). Proprioception and locomotor disorders. Nature Reviews Neurology, 3, 781-790.
9. Ahn, A. C., Tewari, M., Poon, C.S. & Phillips, R.S. (2006) The limits of reductionism in medicine: could systems biology offer and alternative? PloS Medicine, 3(6), e208.
10. 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 Neurology. 03 May 2017 | https://doi.org/10.3389/fneur.2017.00170
11. White, P.D., Rickards, H. & Zeman, A.Z. (2012). Time to end the distinction between mental and neurological illnesses. British Medical Journal, 344, 24-28.
12. Jabusch H. Ch., Müller, S. V., & Altenmüller, E. (2004). Anxiety in musicians with focal dystonia and those with chronic pain. Movement Disorders, 19 (10), 1169-1238.
13. Jabusch H. Ch., & Altenmüller, E. (2004). Anxiety as an aggravating factor during onset of focal dystonia in musicians. Medical Problems of Performing Artists, 19 (2), 75-81.
14. Enders, L., Spector, J.T., Altenmüller, E., Schmidt, A., Klein, Ch., Jabusch, H.Ch. (2011). Musician’s dystonia and comorbid anxiety: Two sides of the same coin? Movement Disorders, 26(3), 539-542.
15. Ioannou, C.I. & Altenmüller, E. (2014). Psychological characteristics in musician’s dystonia: a new diagnostic classification. Neuropsychologia, 61, 80-88.
16. Lencer, R., Steinlechner, S., Stahlberg, J., Rehling, H., Orth, M., Baeumer, T, … Hagenah, J. (2009). Primary Focal Dystonia: Evidence for distinct neuropsychiatric and personality profiles. Journal of Neurology, Neurosurgery and Psychiatry, 80(10), 1176-1190.
17. Ron, M.A. (2009). Primary focal dystonia – A disease of brain and mind: Motor and psychiatric manifestations have a common neurobiological basis. Journal of Neurology, Neurosurgery and Psychiatry, 80(10), 1059.
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.