Focal Dystonia in Pipers – Readers Respond With Touching Personal Stories

We make no apology for this third and final (for now) article on Musician’s Focal Dystonia (MFD). You only have to read the comments below to realise the anguish this distressing condition has caused pipers. We are grateful to these correspondents for sharing their experiences and to Norman Matheson whose erudite articles brought the matter once more to pipers’ attention.

Bill Currie: ‘Some 15 years ago I consulted the late Dr Alice Brandfonbrener, founder and director of the Medical Program for Performing Artists at the Rehab Institute of Chicago about my inability to play a proper rhythmic crunluath passage. By the time I met her, I knew the problem was my E finger. I showed her the problem and she said focal dystonia was the culprit. She explained in no uncertain words that somewhere between my brain and E finger there was a lesion that interrupted the brain-muscle connection. As far as she knew there was no cure.

‘Undeterred, I doubled my obsessive efforts to control my offending finger with daily finger exercises, But it only got worse, as Mr Matheson points out can happen. Moreover, I devoloped a painful condition in my E finger called a ‘trigger finger’ for which I am being treated with injections in the palm of my hand. Thanks to Mr Matheson for writing that I am not alone in the annals of pipers’ woes. I should have listened to my good friend and tutor JD MacKenzie of Dornie who told me to give it up saying, ‘You can enjoy piobaireachd without the crunluath.’ Amen.’

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Kevin McLean: ‘Thanks to everyone who has contributed to this really insightful discussion so far. Ruth Chiles is still alive – I spoke with her just a few days ago and have an appointment with her in the near future. In speaking with a few of her successful patients, she uses a technique called Brainspotting which can help regenerate some of the neural pathways that have been corrupted by MFD. There are many practitioners who perform Brainspotting and in speaking with one of them, they believe this can play a part in re-training the brain and re-generating neural pathways. I’ll be trying this shortly.

‘In terms of the ‘bleak outlook’, a few treatments have been effective for me. EMDR allowed me to go from having symptoms just by touching a chanter to being able to play simple tunes without any symptoms, and this improvement has lasted over the past six months. Direct Neurofeedback has also, more recently, significantly improved my condition. My symptoms went from about a 7/10 to a 4/10 over the past three months of doing it.

‘It’s also interesting to note some of the ultrasound clinical trials that are ongoing or have recently been completed that offer hope for MFD as well. One six year study done in Toronto is set to conclude in December of this year, and will hopefully prove fruitful.

‘In my opinion, it’s really important that musicians don’t give up hope that MFD can be not only managed, but completely moved past. There are a lot of success stories out there, and it comes down to the desire and work ethic of the person for whether or not they’ll be able to form the new neural pathways necessary to continue playing.’

‘I loved playing as much as anyone…but there is a line between enjoyment and obsession…don’t be too hard on yourself…’

Clive Douglas

Clive Douglas: ‘Brilliant article by Norman! I had a few consultations with an expert on Focal Dystonia about 30 years ago at the Western General Hospital in Edinburgh. I can’t remember his name, but I do remember that he was the subject of an extensive article in the Herald around that time. It was through the article that I made contact.

‘I had already had an operation at Canniesburn Hospital to cure the problem with my ‘E’ finger by that point. Needless to say, the operation was not successful. I had never heard of Focal Dystonia until my consultations at the Royal. The doctor mentioned the possible treatments noted by Norman, but he was clear that it was very unlikey to bring any lasting cure.

‘Interesting that Norman mentions Writer’s Cramp as a similar affliction. I did mention to the doctor the possibility of re learning left handed. He cautioned against this. His view was that, as with Writer Cramp, the condition commonly returns to the new playing set up not long after the switch has been made. Like all good doctor jokes he did give me the good news and bad news routine at the first consultation. The ‘bad’ news was that there was no cure for Focal Dystonia. Some people did seem to ‘snap’ out of it, but this was rare. The ‘good’ news was that piping wasn’t my profession!

‘The doctor noted that most of the patients he saw were professional musicians and their careers had been destroyed by the condition. I can absolutely relate to Norman’s comments. The harder I tried to overcome the condition the worse it got. The disapointment of realising that a new playing position. or a differently shaped bag, elastic bands on your fingers , or injections were producing no improvement was hard to deal with.

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‘I do think the onset of Focal Dystonia it is related to an unhealthy drive to improve. I don’t think that too much practice alone causes the problem, but I do feel that the combination of too much pressure to improve, win prizes, meet your own and other peoples expectations combined with too much practice definitely creates the right breeding ground for Dystonia.

‘I do think there is an important lesson here for all young pipers. I loved playing as much as anyone. I loved the band, the solo work and competitions, but there’s a line between enjoyment and obsession. Don’t be too hard on yourself, enjoy the music and if that enjoyment bring success, whatever that ‘success’ might be, then that’s great. But don’t push too hard.

‘I look back now at how I went about trying to improve and I suspect I got it all wrong and the methods I used were the perfect set up for developing Focal Dystonia. I’ve suffered for over 30 years and I still remember the first strange sensations when the Dystonia started. I suspect that I have been lucky in that the development of the Dystonia did stop in my case, so I can still play a tune to a very limited standard.
Please be careful. I laughed at people who said ‘hey, its only a hobby’, but how I wish I had listened to them.’

Andrew Robson: ‘These have been great articles. I was struck by MFD around 2004. I was devastated. A decent enough piper, I served in the Black Watch and was a member of Tayside Police PB. I eventually gave up. When my kids started playing I got involved helping their bands.

‘I occasionally pick up their pipes and can play piobaireachd grounds, first variations etc quite well but Scotland the Brave is impossible. I’m content being a drone tuner these days. I’ve a purpose again and it’s very satisfying when the bands have a good sound in the circle.’

1 thought on “Focal Dystonia in Pipers – Readers Respond With Touching Personal Stories

  1. I have FD. I got diagnosed a number of years back by a neurosurgeon in Aberdeen. I have it in my right hand on my G, B and C fingers and get a terrible painful tremor. Sometimes my fingers get stuck and I can’t place them back on the chanter. It causes a lot of pain in my hand, wrist and forearm. I was put on medications but it didn’t help. I have rested my hand for a number of years but would like to start playing again.

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