Musicians’ Dystonia: a silent plague

Category: Clarinet Classical Interviews Saxophone | Date posted: 7 February 2015

Author: William Upton

Article by William Upton
First published in Clarinet & Saxophone magazine, Winter 2013, Volume 38 No 4 

Imagine rising to the summit of your profession, and then having it all taken away by a condition that appears to have no cure. Once one of this country’s top soprano saxophonists, Tim Redpath found himself sitting at the back of concerts in which he would once have been starring. Having myself suffered from a neck problem that briefly threatened my career, I approached Tim with huge sympathy, and found myself inspired by a story which has a remarkable and happy ending.

Many know the story of Django Rheinhart, whose meteoric career as a banjo-guitarist seemed prematurely over when he was badly injured setting fire to his gypsy caravan. Rheinhardt suffered crippling injuries to the fourth and fifth fingers of his left hand. Despite doctors’ warnings that he would never perform again Reinhardt took up the guitar and devised a unique playing style with which he emerged as the most revered jazz guitarist of all time.

Tim Redpath’s encounter with career-threatening adversity lacks some of the more colourful elements of Reinhardt’s tale; he grew up in the South of England in a house that certainly wasn’t ravaged by fire, cut his teeth in youth music festivals rather than gloomy bals musette of working class Paris, and he wasn’t struck by injury until his mid-40s, by which time he was already a well established orchestral and chamber musician. Nevertheless, his cautionary tale has a great deal to say about musical culture in Britain.

Musicians are notoriously bad at looking after their health. Their instruments are typically in better working shape than their bodies – which sometimes isn’t saying much – and they’re often more attuned to the needs of their car than their own well being. ‘If your car hesitates once on the way to a gig, you worry about whether you’re going to get there’, Tim tells me. ‘If it happens twice you take it to a garage first thing the next day. But as a musician you just put up with all the aches and pains we associate with the profession, never considering that some of these might be the warning signs of something more serious.’

For the last four years Tim has been dealing with dystonia, a neurological condition of which there is limited understanding and strictly speaking no cure, which makes his story of recovery remarkable. Dystonia is a clinical syndrome in which involuntary muscle contractions produce twisting and repetitive movements or contorted postures; it can affect the whole body, half of the body, or specific muscle groups.

Mercifully, dystonia is rare, affecting only 0.000127% of the population. Rare, that is, until you look at professional musicians, of whom two out of every 100 are likely to suffer from a particularly cruel sub-form of the condition called Focal Task Specific Dystonia – otherwise known as Musicians’ Dystonia. ‘Focal’ means that it affects only one part of the body, and ‘Task Specific’ means it only manifests when performing a particular task – playing an instrument.

Scientists remain unsure about the cause of Musicians’ Dystonia, and until recently it was often misdiagnosed as a psychological malaise, an analysis no doubt encouraged by the stereotype of the highly-strung classical musician. Today we understand that there are at least two genes linked to a predisposition to the condition, and the intense physical demands of being a musician can trigger this susceptibility.

When one learns an instrument to a high level, the brain adapts, streamlining the way it processes stimuli from, and controls movement in, the parts of the body most intimately involved in performance. In Musicians’ Dystonia, these adaptations go too far, distorting the brain’s map of the body and leading to abnormal sensorimotor processing in performance situations, causing muscles to work against one another. For pianists at their instrument this can manifest in an involuntary and uncontrollable curling of the fingers, while guitarists and percussionists can be left unable to hold their plectrums and sticks. Phil Todd, who I interviewed in 2011, was left unable to lift his right-hand fourth and fifth fingers from the keys of his flute despite having full use of his hand in day-to-day life; in his case, regular Botox injections were used to weaken the offending muscle sufficiently for him to continue performing.

For Tim the symptoms of Musicians’ Dystonia were less visually striking, affecting the muscles of his embouchure, responsible for creating a seal around the mouthpiece and controlling the vibration of the reed and the flow of air into the instrument. Tim tells me about the moment when dystonia put a stop to his career: ‘I was in the middle of a long run of performances with Opera North, culminating at Saddlers Wells, when suddenly I just couldn’t play; I had to stop at the end of the first act because my jaw was clamping shut towards the back of my head, all the muscles forcing me to bite onto the mouthpiece which would just slide out between my teeth.’ The only way Tim made it to the first interval was by putting his tongue between his back teeth, his subconscious preventing him from biting through it. At the time this was a shocking blow, and threatened to end his career in a flash, but in hindsight the early symptoms had been bothering him for years.

Embouchure Dystonia can take many shapes, resulting in severe lip tremors, loss of control of the tongue, contortions of the lip, or as in Tim’s case, involuntary jaw closure. One of its cruellest aspects is its insidious onset, the early stages of the condition indistinguishable from the telltale signs that accompany lack of practice: loss of clarity of articulation, an unfocused or out-of-tune upper register, or a slight twitch attributable to fatigue. When Tim noticed a lack of flexibility and evenness in his vibrato he turned to the practice room to solve what appeared to be a technical niggle. This was the worst thing he could have done, habituating the condition.

Tim is best known for his work as soprano saxophonist and founder member of the acclaimed Apollo Saxophone Quartet, formed in 1985 at the Royal Northern College of Music. Apollo have always had the air of an ensemble with a mission, whether it be their highly visual performance style, their drive to develop a uniquely energised post-minimalist repertoire, or their ‘us-and-them’ quest to have the saxophone taken seriously as a classical instrument. ‘Through our early years at College’, says Tim, ‘there was still this conservative attitude that you couldn’t make a living playing the saxophone, and that’s what drove us – we were young, very ambitious, and wanted to prove the establishment wrong.’

There have been films made and much ink spilt over the dynamics of top chamber ensembles. Most musicians agree that actors and writers never really come close to evoking the unique combination of friendship, professional rivalry, inspirational interplay, and suffocating proximity of which the onstage drama too often gives only a hint (Vikram Seth’s An Equal Music is a noteworthy exception); with Apollo the intensity has always there for all to see both on and off stage. ‘During the first ten years out of College, Apollo really was like a marriage in terms of the time and effort we were putting into it’, says Tim. ‘There was a great intensity about that whole period, and through the competitions we were winning we were in the unusual position that we had regular well-paid gigs.’ Of all the members Tim had arguably the hardest decision to make in committing to Apollo. He went to RNCM as a clarinettist, and by the end of his studies he was already sitting in with the BBC Philharmonic Orchestra as second clarinet to his teacher Paul Dintinger on a regular basis, and performing with the Hallé. ‘That could easily have been a career path for me, and were it not for Apollo I’d probably be sitting in an orchestra right now. But I couldn’t do Apollo and have an orchestral job, and with the exuberance of youth there really wasn’t any question about it.’

Apollo sealed their reputation when they won the 1992 Tōkyō International Chamber Music Competition, and spent the next decade commissioning major works and performing at festivals. This commitment to the festival circuit – and the amount of time new works require to learn – cut them off from the more lucrative music society gigs that had been their bread and butter, and Tim was starting to understand why they’d been told you couldn’t make a living playing the saxophone alone. ‘I was having to drive countless hours each day just to do enough work to make ends meet’, he tells me. ‘I was doing a lot of teaching alongside the quartet rehearsals and orchestral work, and of the whole quartet I was the only one who was out there playing as much clarinet as saxophone. One moment I would be playing guest principal clarinet, or Eb, or bass, or basset, and the next I would find myself in the saxophone ‘hot seat’ playing works like Shostakovich’s Paradise Moscow (a social-realist opera set in a tower block, replete with magic singing flowers and crooked officials), which has a virtuosic soprano part.’

It was in 2002 that Tim’s vibrato began to falter. Vibrato, writ plain, is little more than a fluctuation of pitch created by moving the jaw up and down, but as a musical device it can be the difference between the saxophone as a piece of plumbing, and the saxophone as second only to the human voice in expressive potential. ‘I could make the same sound I always had done, but day-by-day I lost the ability to produce a controlled, uniform vibrato’, Tim recalls. ‘I still knew what vibrato was, and what I wanted it to sound like, and I even started analysing the physical movements that make it, but my body just wouldn’t do it.’ Anybody who has ever had to take a penalty kick, or had the chance to make a winning putt, will know what happens when you begin to think about things that have always been second nature, and as such Tim’s problem only got worse. ‘I could just about cover it in Apollo, because we were never a group that used wide French vibrato, and it obviously wasn’t a prerequisite for the clarinet, but it was worrying me, and I wanted to know what was wrong.’

Tim attended a succession of clinicians, with doctors, physiotherapists, chiropractors, and vocal coaches all pointing out his excessive muscular tension and poor posture, no doubt exacerbated by long hours in the car, the weight of clarinets and saxophones on the arms and neck, and poor lifestyle. But none of them could find anything to explain his embouchure travails. ‘I was convinced it was a physical issue, but at this point when they couldn’t find anything I was starting to think Am I going mad?’ he recalls. ‘I was having to lift my top teeth off the mouthpiece to compensate for my jaw coming up, so the mouthpiece was starting to float around. This meant that things were becoming more noticeable in terms of my general control of the soprano, particularly in Apollo.’ Apollo’s planned yearlong sabbatical of 2007 couldn’t have come at a better time.

Unfortunately Musicians’ Dystonia does not improve with rest – sufferers can retire for decades but the symptoms will still manifest when they return to play – and despite Tim’s reduced workload, the problems continued to escalate. ‘A year later, I met up with Apollo and we agreed it was probably better if I left the group. At that point Apollo was a year and a half shy of its 25th anniversary. I’d dedicated 23 years of my life to the group, and leaving it wasn’t just a case of losing that playing work; Apollo was my musical identity. If it weren’t for Apollo I wouldn’t have been where I was, because you get the respect and the recognition and the exposure that comes with the ensemble. When that crutch is gone you feel very empty.’

Tim’s decision to leave Apollo was rendered somewhat irrelevant when his symptoms took a turn for the worse. ‘The real catalyst was a performance of music from The Threepenny Opera with the Northern Sinfonia at the Sage in Gateshead. I was playing lead alto, and during the rehearsal the conductor kept asking me for wider vibrato and more stylistic flair, but the more I tried the more my jaw said NO. I convinced myself it would be OK, and I went away and sat in a practice room for the whole three-hour break prior to the gig, but when nothing improved I found myself overwhelmed by a feeling of total despair. Then, halfway through the gig it was like my embouchure had completely gone, and I was hanging on for dear life just to play the melody – forget the vibrato, just get through the gig. A month later I was in Saddlers Wells and my career ground to a complete halt. I couldn’t play.’

Tim now wonders whether there was an element of hubris nemesis to his dystonia. ‘While I was freelancing in the build up to the dystonia I was performing a lot, but there was little time to practice, let alone take care of myself. Fortunately I’d always been a great sight reader, so I thought It’ll be alright, I’ll just go in there and ‘do what I do’. I just wonder if, by pulling my embouchure in all these different directions with very little focused practice on any of the instruments, I was asking for trouble.’ Added to this pot of self-destruction was the physical duress of leading Apollo, waving a soprano around without a sling (like many tall saxophonists, Tim finds a sling attached to a Selmer Mark VI soprano too restrictive). Whether or not these were contributing factors Tim was left in a situation where he couldn’t put an instrument near his face without his jaw clamping shut, and where even drinking a cup of tea or blowing on hot food could trigger his symptoms. ‘The one saving grace was that I had finally been diagnosed with Musicians’ Dystonia by a very knowledgeable physician at the charitable organisation British Association for Performance Arts Medicine (BAPAM), so at least I could put a name to it. But at the time there didn’t appear to be any effective treatment available, or very much knowledge of the condition, so that’s where it was left.’

Few people identify with their work so much as musicians. Whether you call it a job, a vocation, a calling, or a lifestyle, nothing can prepare you to face forced retirement from performing. ‘When everything ground to a halt I cut the whole musical world off. I found it hard to be around another musician because I felt like I’d lost everything that made me who I was.’ It would have been easy for Tim to slip into depression, but the drive that had made him a great performer didn’t vanish with his ability to play an instrument. ‘Dystonia in musicians has become much more publicised within the last few years’, Tim tells me. ‘However, the support required is often overlooked. Behind most musicians with dystonia, there will doubtless be a wife, partner or close family member who is living and sharing the experience of despair with the sufferer. In my case, my wife Rachel [Calaminus], herself a professional freelance violinist and violist, has experienced the journey with me. Without her constant reminders that I ‘will play again’, and her never-ending positivity, I wonder whether I would have got through it without giving in to sticking my instruments on eBay. It has been hard for her, she has had to put up with so much, but it has been worth it.’ Rachel suggested that Tim get away from the music world for a while to clear his head. ‘I’ve always loved restoration work and all things ‘practical’. I’d already taken a City and Guilds course in plumbing a few years earlier, so I decided to embark on some occupational therapy armed with a toolbox and an adjustable spanner! Once the word got out, I was working for half the musicians in South London – there must be at least a dozen bathrooms I’ve installed within this rather exclusive community.’

Some people might argue that the saxophone would serve equally well as a urinal as it is, subject to the application of solder, but others might find the career switch from musician to plumber hard to reconcile. Fortunately Tim has no qualms about the humorous side to his story. ‘I had to do that as part of the process. I love doing things, and I just wanted to get everything out of my system.’ Of course, this was easier said than done when constantly confronted by ghosts from his former life. ‘My lowest point was when I’d finished a very long day working for an orchestral musician friend, and I was just coming downstairs in my scruffs as he turned up with his fellow orchestral clarinettists for a post-gig drink.’ Being confronted by his ex-peers shocked Tim back into action. ‘It cleared my head and made me realise that I had to get back and try playing again, whatever it took.’

With the ubiquity of medical advice on the Internet it is now possible to unearth numerous resources on Musicians’ Dystonia, although as with all Internet dealings one should approach most of these with healthy scepticism. For one thing, it does not take long to realise that there is something of a rift between members of the scientific community, who will tell you that strictly speaking there is no cure, and the small but significant number of musicians who seem to have recovered from the condition. Reporting on a recent medical conference in New York, James Oestreich observed that classical guitarist David Leisner – a recovered dystonia sufferer – ‘electrified the proceedings with his challenge to the [dystonia] research foundation’s claim on its Web site that “there is no cure for dystonia at this time.”’ Tim was fortunate enough to fall on Joaquin Fabra, another musician who claims to have cured himself and led many others to a cure; his website is adorned with ‘before and after’ videos of musicians cured of dystonia. ‘Generous support from both The Musicians’ Benevolent Fund and the Royal Society of Musicians enabled me to spend five days with Fabra in Madrid’, Tim tells me. ‘Most of that time was spent talking to him about what was going on and the positive mental steps I could take. As far as he’s concerned, recovery is a thought process – a way of undoing what you’ve learnt.’ Fabra’s advice is not actually far removed from the advice of many neurological specialists, although they would doubtless consider his labelling of the condition as ‘psychological’ and ‘emotional’ problematic. His advice, however, gave Tim the hope he needed. ‘I remember the first thing he said to me was that if I get through it I’d play better than I’d played before.’

Tim returned to the UK inspired to retrain his dystonic embouchure, but this was easier said than done. ‘There were times when I could almost catch myself off-guard – put the mouthpiece in for a few seconds and just blow with ease – but then my jaw would clamp shut. It was like looking at your little finger and trying to bend it all the way to the back of your hand just by strength of will – you can’t even imagine being able to do that. In the same way, I couldn’t imagine being able to play without my jaw closing. The first step to recovery was getting over that disbelief.’

Tim tried every embouchure variation he could, but temporary respite was the best he could achieve. ‘It went on like that for two years’, he recalls. ‘I was looking at photos of other players and trying to copy their embouchures, but nothing worked and I became completely obsessive over it. During my career I’d had all this information about what an embouchure was, and now my brain couldn’t process any of it.’

Enter John Harle, a controversial figure in the saxophone world, responsible for kick-starting the careers of some of Britain’s most exciting soloists. When Tim and the rest of Apollo were in their final year at RNCM they started travelling to London for lessons with Harle, who was then taking the musical establishment by storm. ‘I started thinking back to those first lessons with John, where he told us to forget everything we’d ever learnt’, Tim tells me. ‘He got us to just put the mouthpiece in without forming an embouchure and blow as hard as possible. You make this huge, uncontrolled sound which looks after itself, and all you have to think about is moving the fingers. It trains you to breathe and blow with a complete sense of freedom, and once you can do that without thinking you gradually step back and involve the embouchure and the tongue, building up the muscle to cope with the unprecedented volume of air you’re expelling. I think everybody deals with that process of stepping back differently, and I began to wonder if I’d got it all wrong.’ Going back to the exercises from that formative year was a seminal moment for Tim, who found that although he couldn’t make a nice sound, when he didn’t worry about an embouchure his jaw didn’t clamp shut. ‘I’d got into this vicious cycle of thinking that the clarinet and saxophone had taken me all that time to learn to play, so they must be really complicated. But they’re not. I’d been trying to make subtle adjustments to my embouchure when what I needed was to wipe the slate clean and start from scratch.’

The year of 1977 is often regarded as a blemish on Glenn Gould’s otherwise remarkable career, one in which his excessive perfectionism led him to hide away from the music industry. But there is a growing theory among neurologists that the arch-hypochondriac was actually suffering from Musicians’ Dystonia of the right hand. Close scrutiny of his diaries suggests that his year of silence was instead bustling with systematic attempts to overcome the worsening condition. As Frank Wilson writes, ‘with his career at stake and apparently convinced no doctor could help him, [Gould] turned his studio into an experimental laboratory with his own body as object of enquiry. For the next year he used his eyes, his exquisitely tuned kinaesthetic sense, and his imagination, to dismantle and scrutinize virtually everything in his own posture and movements that might bear in any way on his playing.’ Gould re-emerged to make his defining musical statement – his second recording of Bach’s Goldberg Variations – and Tim’s recovery is no less remarkable. ‘After my epiphany I remember getting some repertoire out, and just playing it all. I didn’t care about the sound, and thankfully the fingers weren’t any worse for wear even after three years away from playing. I did this every single day, with a ridiculously soft reed, and slowly the sound started to develop, and I would hit on small things every week. But I couldn’t get complacent, because each time I let myself think about forming an embouchure I’d revert back to what I’d learnt to do and the jaw would spasm.’ As Tim grew in confidence he realised that he really was rebuilding an embouchure from scratch. ‘Everything felt completely alien, because every muscle was in a slightly different position to where it was before. I unlearnt 30 years of bad habits, and even now I look in the mirror everyday when I play and think, Yes, this is better than yesterday.’

Perhaps the most remarkable thing about Tim is that he feels lucky for having been given the opportunity to take a step back from a job that had lost its joy. ‘It’s very easy in the music industry to end up having to claw for air and do stupid things just to break even. As musicians we need to keep ourselves physically and mentally fit, and not take our abilities for granted. I never thought Hang on; something’s not working, until it was too late.’

The Apollo Saxophone Quartet has of course moved on to an exciting new period in its history, with Carl Raven and Jim Fieldhouse joining Rob Buckland and Andy Scott. Similarly, Tim is determined to take the Apollo spirit into unchartered territory with his new trio Trifarious. ‘During the period in which I couldn’t play and I was picking Rachel up from concerts, or sitting at the back of the hall, I used to yearn to perform’, Tim explains. ‘I made myself a promise that when I got through this we would play music together and we would go out and perform new music, including music written by the composers I’d worked with closely in the past.’ Tim and Rachel have been joined on piano by Nadine André and he has made good his promise to commission new repertoire, starting with Andy Scott and Barbara Thompson. ‘Just before the dystonia kicked in I recorded and co-produced a CD for Andy, and we had a deal that he’d write me a piece in return. All the way through this he’s been saying “Just let me know when”, and sure enough when the time came he wrote me a fantastic trio called Stride.’ Tim was more sheepish about getting back in touch with Barbara Thompson, whose struggles with Parkinson’s disease – a condition with strong links to dystonia – are well documented, but her response was characteristically warm. ‘She was just so pleased to see me, and she’d already written a piece for clarinet and piano called Russian Roulette; I just needed to persuade her to add a viola! It’s one of the most ferociously challenging pieces of music I’ve ever seen, and when she sent me the part I said “Barbara, I’m going to play this for you one day”, with more confidence than I felt.’ Before long, Barbara had expanded on Russian Roulette, turning it into a 20-minute four-movement suite. ‘I have spent and continue to spend an awful lot of time with Barbara and her husband Jon (Hiseman). Their constant positivity has been an real tonic for me, and to now have the chance to perform her music is a great privilege.’

Trifarious have now performed five concerts, and are currently recording an album for release in Spring 2014 to coincide in with a national tour celebrating Barbara Thompson’s 70th birthday year. This will feature a brand new 35-minute work commissioned by the group for Clarinet/Bass Clarinet, Viola and Piano.

Today Tim finally feels that he can see the end of the recovery process, and is enjoying every minute of his new lease of life. ‘It’s taken four and a half years to get to this point, and now it’s just a case of continued muscle building and refining. I feel that I’m playing at 80% of my full potential. I say 80% because I think that’s a healthy way to look at it, because recovery from dystonia should never be taken for granted. It crept up on me before so what’s to stop it doing the same thing again? Fabra was very wise when he told me, “Never become complacent. Always keep looking over your shoulder, just to be sure.”’

Dystonia is something of a silent plague among musicians, both in terms of the way it creeps up on us, and in terms of the lack of acknowledgement it receives. If as many as two out of every one hundred musicians suffer from the condition, then conservatoires owe it to their students to educate them about the risks and symptoms, because neurologists and musicians agree on at least one thing: the longer the symptoms go undiagnosed the more difficult it is to retrain and recover. We like to say that musicians are ‘athletes of the small muscles’, but if we are to take this analogy seriously then we are decades behind our Olympic counterparts in terms of both physical and mental wellbeing. Until we catch up we remain reliant on inspirational anecdotes such as Tim’s to guide current and future sufferers to rehabilitation.




About William Upton

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