Wednesday 22/03/17 6pm
Royal London Hospital for Integrated Medicine
Please confirm attendance with Nicholas.Straiton@uclh.nhs.uk
Posts Tagged ‘Dystonia’
Wednesday 22/03/17 6pm
Download our new Musician’s Focal Dystonia Factsheet here.
Dystonia is a neurological condition that causes involuntary muscle spasm leading to abnormal movements. While they are unlikely to encounter this condition, musicians may develop a rare form of task-specific dystonia known as ‘Musician’s Focal Dystonia (MFD)’. Most cases of MFD affect the upper limb (hands, fingers, wrist or forearm) in guitarists, pianists and string players. However, brass or wind players may also experience MFD in the hands and in areas relating to embouchure (mouth, lips, cheeks, jaw or tongue). Percussionists may develop dystonia in the foot.
To meet the need for guidance about Musician’s Focal Dystonia, we have developed our new Factsheet in partnership with the Association for British Orchestras (ABO) and the Musicians’ Union (MU). The Factsheet provides a brief overview of symptoms and possible risk factors, and suggestions for prevention and management plus advice for employers, including orchestra managers, and sources of further advice and support.
This publication was produced in consultation with our Dystonia Advisory Group: Dr Rebecca Whiticar (Chair), Dr Deborah Charnock, Dr David Fielding, Dr Mike Shipley, Dan Hayhurst (BAPAM); Dawn Day (ABO); Diane Widdison (MU); Katherine Butler (Clinical Specialist in Hand Therapy); Dr Mark Edwards (Consultant Neurologist); Mr John White (Upper limb orthopaedic surgeon).
We are extremely pleased to have collaborated with the ABO and BAPAM on producing this guidance which we hope will be useful to both musicians and the engagers of musicians. Although FD is relatively rare we know that being able to access the correct information for diagnosis and pathways to treatments is invaluable to the musicians that are affected. We hope that the guidance, that has had input from the top medical specialists in the field, helps contribute to the increased awareness of FD in musicians - Diane Widdison, Musicians’ Union National Organiser – Education and Training
Download our Musician’s Focal Dystonia Factsheet here.
The Pathophysiology of Dystonia
Are you a musician with focal dystonia?
A team of researchers at the UCL Institute of Neurology and The National Hospital for Neurology and Neurosurgery, led by Dr Mark Edwards, are particularly interested in hearing from musicians with focal (task-specific) dystonia. The aim is to develop methods for assessing the symptoms, and discover information which will be useful in future clinical trials. It is important to note that the study is not, in itself, a clinical trial for treatment of dystonia.
Musicians participating will need to attend multiple sessions at the Institute of Neurology with their instruments (a keyboard can be provided). You would need to able to attend 12 sessions which last one hour or less. The design requires four sessions in four consecutive days which are repeated three times with a gap of a few weeks in between. Travel expenses will be covered and times and dates are generally very flexible. The study uses transcranial magnetic stimulation within specific safe parameters. It is not invasive, does not involve pain and is generally very well tolerated by participants.
The team hope to establish a specific clinic for this type of dystonia.
If you have this form of dystonia and would like to be seen in clinic or are interested in taking part in studies please email Dr Mark Edwards, Consultant Neurologist, via: firstname.lastname@example.org.
The team will provide full information to anyone interested in taking part.
Research Ethics Committee approval for this study has been granted by the NHS National Research Ethics Service.
Arriving in Aspen for the first time the eye is struck by the immense scale of the mountains and the lush greens of the tree canopies upon them. The small but beautiful town nestles amongst this splendour providing the perfect example of wilderness chic. Further up the winding highway is the tiny ski village of Snowmass, built in the 1960s as a way of accessing the incredible skiing potential of Burnt Mountain, Elk Ridge, Brush Creek and other such evocative excursions. The grandeur of the The Viceroy Hotel, the home of the PAMA conference for the past few years, sits in a prominent position at the heart of this well planned town.
This year PAMA reached the grand old age of 30 and its focus was on ‘International Research’ and ‘The Future of Performing Arts Medicine’, two subjects at the core of recent BAPAM initiatives. Therefore, our new Diploma/MSc and our inter-collegiate research planning meant we had something good and relevant to share. As it turned out I was the last person of the conference to speak…….it goes without saying that all that had come before was a hard act to follow, but the presentation was favourably received and an invitation made to return next year to continue the conversation about R&D of Performing Arts Medicine.
There were representations from all over the map with Australia, America and Canada representing the majority of speakers. However, our own Dr Juliet Bressan from Dublin and Patrice Berque from Glasgow gave inspiring presentations on dystonia and the developments in both clinical practice and rehabilitation research. The highlight was the appearance of the founder of PAMA, Dr Alice Brandfonbrenner (pictured). She gave an inspiring and thought-provoking talk about the State of the Performing Arts Medicine Nation, receiving a standing ovation. She elicited questions such as, “What have we become?”; “Where are we going?”; “How do we develop scientifically without losing the artistry?”; “What are all these measurements of performers for?”…
Chatter in the coffee breaks was fast and furious and extremely stimulating. There was also some incredible musicianship and hospitality organised by Dr Kathleen Riley and her executive team – including violinist Cho-Liang Lin (pictured) performing astonishing Kreisler upon a multi-million dollar 1715 “Titian” Stradivarius and a remote (live but not in the room we were in) performance by Frederick Chiu of Prokofiev’s fiendish Toccata in D minor opus 11. There were also performances from many of the presenting practitioners, including a masterful rendition of “Poisoning Pigeons in the Park” by your very own Jennie Morton and Ian MacDonald.
The huge passion from all, in attempting to understand the difficult paradigms that face research into such areas as hearing loss (Dr Kris Chesky and Dr Amyn M. Alain University of North Texas) and dystonia was consistent, as was the concern that we don’t lose the artist amongst the statistics and the data (Regina Campbell, Boston). There seemed to be agreement that although there is still much to measure and access, in actual fact many research protocols are well established and providing very useful and helpful information (Prof. Dr. Christoff Zalpour, Osnabruech, Germany). This was coupled with a sense from the younger members of the conference that International Projects (Dr Christine Guptill, Ontario, Canada) needed to be expanded to include them, because future direction and opportunities within the field were not totally clear. So more to do here. Interesting presentations about psychology and mindfulness (Gail Berenson, Ohio University; Vanessa Cornett-Murtada, Minneapolis) also figured prominently sparking off keen debate.
So to the future……
The future we all hope lies in our cooperation. The Australian team (ASPAH) were very proactive this year and the we were inspired by drive of one of the world’s champions of PAM, Dr Bronwen Ackermann, setting up (in the last few weeks) the International Liaison Committee (the ILC of PAMA) to facilitate this needed global cooperation and shared thinking on a number of the current burning issues. Hopes for an International PAM Conference once every 4 years and increased presence using social media are also high on this initial agenda.
All eyes are on us here in London as we proceed with year two of the Performing Arts Medicine MSc and all fingers are busy emailing across the time-lines to secure the development and education of the next generation of experts within the field. Watch this space.
Are you a musician with focal hand dystonia?
An NHS team co-ordinated by Dr Mark Edwards (who is also Neurology Advisor to BAPAM) is conducting research into musicians’ dystonia. A number of exciting projects with the aims of better understanding this condition, and hopefully developing new treatments, are currently running.
The team are recruiting enthusiastic musicians for a retraining programme to help establish the most effective treatment strategy. The studies will be conducted at the Institute of Neurology in Queen Square, London which is a leading UK establishment in dystonia research. The work is co-ordinated by Senior Lecturer Dr Mark J Edwards and two PhD students, Dr Anna Sadnicka and Dr Panagiotis Kassavetis. At this time the team is specifically recruiting musicians with dystonia affecting the hand.
If you have this form of dystonia and are interested in taking part in studies (or if you are healthy and wish to register as a healthy volunteer) or have further questions please contact: Dr Mark Edwards, Sobell Department, 33 Queen Square, UCL Institute of Neurology, London, WC1N 3BG.
Or email Dr Edwards via: email@example.com.
Note: BAPAM is not involved with organising or overseeing this project.
Physiotherapist and former professional horn player, Patrice Berque, has been awarded the Susanne Klein-Vogelbach Special Award 2011 for his paper, A combination of constraint-induced therapy and motor control retraining and motor control retraining in the treatment of focal hand dystonia in musicians (Medical Problems of Performing Artists, vol.25:149-161).
The prize is awarded to researchers in neuroscience, orthopaedics, and anatomy whose work is oriented to a better understanding of the underlying principles of human movement and its rehabilitation, with the Special Award being granted to excellent papers from the field of physiotherapy. Movement in this context is not restricted to locomotion, rather it covers all kinds of muscular-induced human movement including mime and music. This is only the third time the Special Award has been given (it was previously won in 2004 and 2010).
Medical practitioners involved in research may be interested in applying for the award in future years. There are 2 prizes: the Main Award, endowed with (Swiss Francs) CHF 10,000 and the Special Award, endowed with CHF 2,000. The submission deadline for this year’s prize is 30 September 2012. Click here for more detailed information (Word doc).
Katherine Butler is a Clinical Specialist in Hand Therapy and a trained musician. She has worked with many performing artists with upper limb problems.
Articles authored or co-authored by Katherine Butler can be found on the publications page of her practice website and include, Injury Prevention for Musicians and Focal Hand Dystonia Affecting Musicians (an area in which she is currently performing doctoral research with Dr Karin Rosenkranz).