On Focal Dystonia (2)

<— back to part 1

As far back as November 2012, I was noticing a strange sensation in my left hand. During a recording session, I noticed that I could not control my vibrato, and especially when the middle finger was involved. However, I simply attributed this to occupational stress, since there was no pain at all. The holidays were coming up, and I would get a good break, so I was not worried. Near Christmas time, when I was already well rested, I decided to do some practice, which was when I noticed that I had trouble keeping the middle finger on the fingerboard. Any violinist can tell you that already this is a strange turn of events. Typically, the middle finger is one of the strongest, and as far as vibrato is concerned, often the easiest finger to use. Actually, what perplexed me the most was the complete absence of pain. (I’m glad to say that I’ve never experienced pain in my musical practice. Violin playing, or indeed, playing most orchestral instruments, is not inherently comfortable, but I think it’s clear that it should never involve pain!). This made me suspect that there was more to it than the usual repetitive strain injury.

I had read the book Musicophilia by Oliver Sacks (highly recommended), so I was aware of some of the bizarre things that could happen in the brain. In particular, I recalled the famous case of the great American pianist Leon Fleisher, who completely lost the use of his right hand due to focal dystonia (unaware to him and many of the doctors he consulted at the time), and performed left-handed for decades before experimental Botox treatments enabled him gradually to return to playing with two hands. Obviously, this is a worst-case scenario – at its worst, his right hand was completely paralysed and clenched up – and unfortunately for Fleisher, the correct diagnosis and appropriate treatments were not even available to him until it was far too late. Anyway, I was at least aware of such a disorder. The two characteristics of my problem which stood out were the lack of pain, and the task-specific activation of the involuntary movements in the left hand. So what I could I do about it?

For better or for worse, when something goes wrong for a musician, we usually all have the same primary response: practise more. As I stated in part 1 of this post, and unbeknownst [side note: perfect opportunity to use this hilariously archaic word] to me at the time, this is one of the worst things someone with focal dystonia could do. The brain notices the “disobedient” fingers, then tries very hard to compensate by telling the fingers to do even weirder things, thus making the process more and more uncomfortable, creating a vicious cycle. And all this time, you are thinking, what a terrible violinist I am, I can’t even play scales in tune! or some variation of that thought. The harder you push, the more unwilling to cooperate the fingers become. Strangely enough, the worst thing about my situation was the fact that I was still “able” to perform – that is, the dystonic movements, although they were frustrating, were not severe enough to convince me to stop playing. Thus I had a false sense of security when I entered my fourth and final year at the Conservatorium of Sydney in 2013. Furthermore, I was working on an Honours performance project and thesis , and also had many important performances overseas, such as the European tour with the Australian Youth Orchestra, so I certainly wasn’t taking it easy! So far, I had not had the condition diagnosed or treated. I did consult Dr. Bronwen Ackerman, a physiotherapist with a wealth of experience treating musicians, who prescribed various stretches and finger exercises. She mentioned focal dystonia, but did not deem my case to be particularly serious (and she was not wrong). In hindsight, this would have been a good time to step back from violin playing and spend time recovering. But what use is hindsight, who tells you everything you should have done and not a single thing about overcoming the problems of the present? Seeing that it was my last year at the Conservatory, I decided to push on and finish my degree.

In June [or early July? My memory of exact dates can be a bit fuzzy] 2013, I happened to be in Europe. I had just played a recital in Oslo, at the Vigeland Summer Concert series run annually by my teacher Prof. Ole Bøhn. It was a good concert, and I was especially glad to have collaborated so well with the Norwegian pianist Geir Henning Braaten. I recall feeling particularly good about our performance of the Janacek Sonata. But, even though I played well enough to “fool” the audience (I hope the meaning of this is clear, as I do not intend to sound snobbish!), I knew my left hand was letting me down, and I realised that the problem would not simply sort itself out, like a sore muscle after sleeping at an awkward angle. Consequently, making use of the opportunity of being in Europe, my teacher and I travelled to Hannover to visit Dr. Eckart Altenmüller, who is a leading expert in musician’s medicine. Dr. Altenmüller has published dozens of articles on focal dystonia, and works at the Institute for Music Physiology and Musician’s Medicine. The existence of such an institute is sad (that there are so many medical problems associated with being a musician), fantastic (that there exists such a facility to treat, cure and research these musical maladies), and once again sad (that we do not have such a level of support and care for musicians here in Australia). Dr. Altenmüller was quick to reassure me that he had seen many patients with the exact same problems, and many have in fact recovered. The treatment he prescribed was controlled doses of the antidyskinetic drug trihexyphenidyl (pharmaceutical name Artane), starting with a tiny amount and then increasing the intake gradually and by small increments. Research has shown that this treatment can be effective (Jabusch, Zschucke et al., 2005, for instance), since it inhibits spasmodic movements, but the side effects of this drug are problematic. In my case, although symptoms were somewhat alleviated, dryness of mouth and quick onset of fatigue made this treatment unfeasible for the long term. After a few months, I stopped taking the medication in preparation for the final stretch of my Honours degree.

The last semester of my study was particularly hectic. I toured with the Australian Youth Orchestra for 4 weeks, submitted my thesis on the solo violin music of Elliott Carter, and presented my final recital, featuring music by Carter, Ives and Stravinsky. The difficulty of the repertoire I performed in my Honours recital reflects a stupid amount of determination on my part, but also shows the intriguing phenomenon of being simultaneously “able” and “unable” to play (hopefully, the meaning of this is clear). Without any scientific framework, I speculate that this is possible because of the muscle memory developed by many years of rigorous training. I probably would not have succeeded if I had bad technique. Then again, if I had not trained at such a high level and instead played the violin merely as a hobby, I would not be at risk of developing dystonia – recall that it only seems to affect those with extensive training! Such is the irony of this disorder. In any case, I did well enough to graduate with First Class Honours. I was not happy for long though, because now the problem of what to do next suddenly became serious. With my condition, my initial plans of doing postgraduate study in Germany were out of the question. I was clearly not fit for auditions.

The year 2014 turned out to be a difficult and generally unhappy one, but it didn’t start that way. In January, I was performing at the Santa Catarina Music Festival in Brazil, which was a fantastic experience. Once again, I was somehow able to muster the ability to play “through” the dystonia, but of course I knew by now that I needed a proper solution. Knowing that I would be in Europe the following month, I contacted Dr. Altenmüller to arrange another appointment. In February, at the invitation of Ole Bøhn, I travelled to Oslo, where I performed the wonderful Sonata for violin and cello by Ravel with American cellist Chris Gross. This time, everything I played felt uncomfortable. Something had changed, and I was no longer able to push through. According to Chris, I played well enough to convince most people that there was nothing wrong, but in reality I felt horrible. After this concert in Oslo, I travelled to Berlin, where I stayed for 9 [or was it 10?] days. I had always intended this period to be a real holiday, but fortunately I also had the foresight to arrange my appointment in Hannover during this time. I showed him what continued to be problematic – namely, the involuntary flexion of the ring and pinky fingers whenever the middle finger was on the fingerboard. (Incidentally, this is a typical dystonic posture; see Altenmüller & Jabusch, 2010.  If there was any doubt before, this cleared it up). After discussion, I decided to accept his recommendation for treatment with botulinum toxin (Botox). The dosage was carefully calculated, and the doctor injected the drug at a specific location in my arm, such that only the muscles controlling the dystonic fingers were affected. His expertise was impressive.

Apart from the inevitable shock and pain of having your arm muscles poked by an ominously long needle, there were virtually no side effects – I merely had to avoid picking up heavy objects with my left arm for a week or so. The tension in the muscles was alleviated, and for the first time in a while, I felt able to control my fingers again. By the end of March, I started to ease back in to playing the violin. At this point, I had accepted a position at the Sydney Con as a research student, but looking back, this seems to have been a mistake. Being associated with a music institution again, I was far too eager, and also felt a certain pressure, to get back into performing, and this most likely delayed my recovery. I realised that the treatment I received could only set up the desired physical circumstances for recovery (i.e. symptomatic relief), but it seems it did not address the neurological root of the dystonia. (See Frucht, 2009, pp. 139-141; Altenmüller & Jabusch, 2010, pp. 6-8). The brain map of my fingers, it seems, was still scrambled. Nevertheless, on certain occasions, I was (somehow!) well enough to perform: in May, I was concertmaster at the inauguration concert of a newly-founded orchestra, then called the Bruckner Orchestra Sydney, now officially known as The Musician Project; in July, I played with the Australian Youth Orchestra in Brisbane, under the baton of world-renowned Australian conductor Simone Young. I really know how to pick my concerts, don’t I?

The AYO concert in Brisbane was to be my last public performance in a long time. After returning to Sydney, I made the very difficult decision to cancel all remaining performance engagements that year. In retrospect, my circumstances in 2014 were not all that different from 2013. The dystonia had not worsened, but it had certainly persisted. For the first time, my condition was taking a psychological toll, and I found myself in the unusual position of having lost all motivation. I think I speak for many performing musicians in saying that our self-worth is correlated highly with our ability to perform well, and when we lose this ability, we are devastated. It is no wonder that musicians are often unwilling to discuss injuries. As Oliver Sacks wrote, there is a strong belief that admitting to an occupational disorder or injury would amount to “professional suicide”, and hence we have this “veil of secrecy” (pp. 292-293). Fortunately, this is changing rapidly. In the last and final part of this series, I will write about psychological aspects of dystonia, and also outline some techniques I have been using to recover.

Click here for part 3

References

Altenmüller, E., & Jabusch, H. (2010). Focal Dystonia in Musicians: Phenomenology, Pathophysiology, Triggering Factors, and Treatment. Medical Problems Of Performing Artists, 25(1). pp. 3-9.

Frucht, S. (2009) [see part 1 for full citation].

Jabusch, H-C., Zschucke, D., Schmidt, A., Schuele, S. & Altenmüller, E. (2005). Focal Dystonia in Musicians: Treatment Strategies and Long-term Outcome in 144 Patients. Movement Disorders 20(12). pp. 1623-1626.

Sacks, O. (2008). Musicophilia. London: Picador.