New clinical and rehabilitation perspectives on musician’s dystonia
The 7th National Dystonia Day took place in Rome. It is the yearly conference organized by the Italian Dystonia organization ARD (Associazione Italiana per la Ricerca sulla Distonia). As every year, the aim was to help people understand better Dystonia and to improve communication between doctors, patients and families. This year’s event was coordinated by Professor Antonio Suppa. The theme was musician’s dystonia, a rare but special form of the disease. It only affects the movements a person uses to play an instrument or to sing. At the opening, ARD president Flavia Cogliati spoke about how hard it is to explain this disease to other people. It is very disabling, but people can still live an almost normal life.
What is musician’s dystonia?
It is a “task-specific” movement disorder. The musician wants to make fine and precise movements, but they no longer work as they should. Often this happens only in a certain passage or on one instrument, usually the one the musician has practised most. Professor Alberto Albanese (Humanitas, Milan) explained which parts of the body are most often affected: the hand (pianists, guitarists, violinists), the mouth (wind players) and the larynx, or voice box (singers). Usually there is no pain. Musicians say “my finger doesn’t obey me”, or that their fingers bend or become stiff, or that their playing slows down. So at first, many think they have a problem with their technique. In about one case in three, the problems also appear in other activities that use the same muscles, such as writing or typing on a computer.
According to Dr Anna Castagna (Fondazione Don Gnocchi, Milan), it affects less than 5% of professional musicians. It is more common in classical music, but it also happens in pop and rock. Cristina Frosini is a pianist and the general director of the Accademia Teatro alla Scala. She said that people now get the disease at a younger age, and that many conservatory students are affected today. Diego Cossu, a voice specialist (phoniatrician), described the rare singer’s dystonia. It can be measured with special tests, and it is not caused by technique or anxiety.
Why does it develop?
For many years, people thought dystonia was a psychological disorder. Professor Angelo Quartarone (IRCCS Neurolesi Bonino-Pulejo, Messina) stressed that today we know it is a biological disorder of the brain circuits that control movement. The parts of the brain are healthy, and an MRI scan is often normal, but they do not communicate well with each other. It is as if there were “more accelerator and less brake”. When we move a finger, a healthy brain “switches off” the muscles next to it. In dystonia, this brake becomes weaker, so muscles that should stay at rest are also activated. Also, through repetition, the brain learns a wrong movement pattern and keeps it. Experts call this a “double hit”. The first part is a personal tendency, which can be genetic but does not decide everything. The second part is a trigger, such as repetitive practice in search of perfection, stress or an injury.
Recognising it early
All speakers stressed how important early diagnosis is. It often takes years before the problem is recognised. Many patients first go to an orthopaedic doctor or a hand surgeon. Fear of being judged also makes them hide their symptoms. The most common reaction is to practise more and change technique, and this usually makes things worse. “If you recognise it straight away, you can get out of it very quickly,” said Frosini. At the round table with Maria Concetta Altavista, Marcello Romano and Marcello Esposito, the speakers asked for more training for conservatory teachers and students, more information for patients and more cooperation between specialists. Professor Albanese also encouraged patients to ask their doctors to fill in the data collection form from the new dystonia classification (2025).
Treatments available today
There is no single cure. A team of different specialists has to build a “tailor-made” treatment for each patient. Botulinum toxin is still the first-choice treatment for focal forms. Dr Castagna showed that very small doses can control muscle activity without making the muscles weak. The doses are injected precisely, using ultrasound as a guide. The effect is temporary and patients need regular treatments, but for many musicians the benefit lasts for years. She added that the toxin should always be combined with other treatments. Tablets and other oral medicines, such as anticholinergics, play only a small role because of their side effects.
Rehabilitation is essential. Francesca Panuccio, an occupational therapist at Sapienza University, presented an experimental programme at the Policlinico Umberto I hospital in Rome. It has weekly sessions of about one hour, in four phases, from physiotherapy to exercises on the instrument. Patients do not have to stop playing. The instrument becomes part of the therapy, and many participants have happily started playing again. Professor Renato Pantaleo (Assisi School of Music Therapy) explained that music therapy does not cure dystonia, but it takes care of the musician. Musicians improvise without sheet music and without being judged. This reduces their fear of making mistakes and brings back the joy of playing.
Looking to the future
For the most serious cases, Professor Roberto Eleopra (Besta Neurological Institute, Milan) presented two options: deep brain stimulation, which needs surgery, and focused ultrasound, which treats a very small area of the thalamus without any cut. The first results are encouraging, but they are based on only a few cases, so larger studies are needed. New medicines that act on the causes of the disease are also being studied, but so far only in animals.
You can play again
The musicians’ stories gave hope and showed real examples of recovery. Pianist Cristina Frosini had her first symptoms in 1999, when her fingers became slower and less precise. After years of wrong diagnoses, she found out in 2005 that she had dystonia. Thanks to rehabilitation and botulinum toxin, she went back to giving concerts in 2012. Today she leads the Accademia Teatro alla Scala.
Pianist Alberto Idà, 30, teaches at the Reggio Calabria Conservatory. He developed dystonia in his right hand during a very stressful period. Thanks to the rehabilitation programme at Sapienza University, he plays in public again and has found the joy of music again.
Guitarist Roberto Porroni, an international concert performer, has lived with dystonia since 2006. Since 2019 he has had regular botulinum toxin treatment at the Fondazione Don Gnocchi, and he now gives concerts again as before. His advice: do not lose confidence in yourself, and trust qualified doctors.
Yasuyo Segawa is a Japanese pianist. Dystonia affected her right hand when she was 17. She found a new career playing music for the left hand only, and she has won prizes at international competitions. Her message: do not ask yourself what you can no longer do, but what you can do now.
Many patients and students from the nearby Sapienza University were in the audience. The conference was also streamed live on ARD’s social media and YouTube channels. Once again this year, ARD helped to raise awareness of dystonia. When this disease affects musicians, it can turn both their private life and their career upside down. The day showed that real treatment and recovery are possible, as the three stories of musicians who got back control of their hand and their music showed.
