Dystonia Debilitation In Musicians

A case study of musician
Andy Billups
from The Hamsters

by Marc Sallis.

As any musician knows, their technical ability on their chosen instrument is what allows them to have a career, or enjoy their hobby. But few musicians think about what they would do if they were suddenly struck down with a condition which prevented them from playing.

Andy Billups is the bass player with one of Britain's hardest working live bands, The Hamsters.. The band have been on the road for over a decade, but Andy's career very nearly ended prematurely in 1992 when he realised he was suffering from Dystonia Debilitation in his hand.

"I first noticed a problem when we went into the studio to record our first CD album in 1992," he explains. "Half way through the first day of recording I realised there was something wrong with my hand, it just didn't feel right. Our drummer mentioned that it was because I'd had a week off from playing, but that was never a problem, I knew there was something wrong."

And it was not long before the condition really began to affect Andy's playing.

"Two months later we were doing a gig and I was dropping notes all over the place. So out of frustration I abandoned my finger-style technique and took one of our guitarists picks, which obviously concerned me. I didn't know what it was, so I got in touch with my doctor."

But the problem was not diagnosed straight away, and it was not until a visit to a neurology specialist in Whitechapel that Andy's worst fears were confirmed.

"At the time the band was really riding high and as long as I was still playing and doing my job, that was my main concern. Having said that, I knew my bass playing technique was good and with the on set of dystonia it was devastating. Ultimately, it made me leave the band because I lost all confidence in my playing. I felt like I was dragging weed for the band, it was like taking 50 steps back as far as my technique and playing ability was concerned."

Although dystonia is a condition which very few people have heard of, the Dystonia Society estimate that there are more than 38,000 sufferers in the UK. It is a condition which is closely related to multiple scirocious and Parkinson's disease, as it is a muscular neurological condition.

According to the UK's leading experts in Dystonia Debilitation, there is a one in twenty chance of the condition going as unannounced as it came. But that fact is no comfort to those people whose lives are being affected by the condition.

Although dystonia is a recognised condition, many medical practitioners are still not aware of it. Jutta Moon from the Dystonia Society appreciates the difficulty that doctors have in recognising the condition.

"Dystonia can be difficult to diagnose, which means that many patients remain untreated, because their symptoms have not been realised," explains Jutta. "We don't really know what causes dystonia, but it is thought that it is related to a chemical imbalance in the brain. There are probably thousands of sufferers out there who don't even realise that what they are suffering from is dystonia."

In the seven years Andy Billups has suffered from dystonia he has learnt a lot about the condition.

"There are different degrees of dystonia, one of which is a focal dystonia, which is what I have got. It's like a muscle spasm, a tightening of a muscle," explains Andy.

"You can get it anywhere, I've got it in my hands, some people get it in their neck, sometimes in the legs, but that is very rare, it normally occurs above the waistline. But you can get full dystonia, which leaves people in wheelchairs and they look like they are thoroughly contorted," adds Andy.

Although dystonia is a disabling condition, sufferers rarely experience pain.

"The weird thing is, there is no pain at all, no discomfort. The only discomfort is if you go to do something that you know you used to be able to do and in an effort to do it you get a cramp. Obviously, with me it was trying to play bass with my fingers, which I had to stop doing, because they just wouldn't work," recounts Andy.

Dystonia can appear in men, women and children of all ages and as of yet there is no cure for the condition. Something which frustrated Andy at the time.

"All the doctors said was that there was a one in twenty chance of it going and the only thing to do was to re-learn my bass playing. I was really upset, because I thought that it was really insensitive of someone, who doesn't appreciate that I had spent all my life cultivating a technique, to turn around and say 'well you can't do that any more, you've got to start again'. And in all fairness to them, seven years down the line, I've now realised that they were dead right, you've got to learn again."

But it wasn't just Andy's playing which was affected by the dystonia.

"I also had to learn how to write again and as an ex-manuscript writer I found this extremely upsetting. My handwriting now, looks like it used to, but the thing is, it is a lot more difficult to do it, because my hand takes a different guise as it holds the pen. But I've learnt how to write again and the same goes for the bass. It is a cold compromise, but it works."

Knowing the possible affects of dystonia Andy is relieved that his focal dystonia has not left him in a wheelchair.

"I have got away with murder just having it in my hands and mercifully it doesn't seem to have got any worse. Maybe because I've got on top of it mentally," ponders Andy.

"The irony is, if I had not played guitar or wrote a lot, I could have gone on a lot longer before discovering that I had got dystonia. But because of the fine muscular movements involved with playing guitar, I noticed it very early on. I have seen people contorted in wheelchairs due to dystonia, so I feel lucky to have it just in my hand."

Although Andy left the band, he soon came back and realised that just because he was suffering from dystonia all was not lost.

"I realise now that things were maybe not as bad as they seemed, but that is beside the point. It took 15 months out from the band and then to come back playing again and have people coming up to me and saying that it was good to see me back and that it all sounded good to them, for me to realise that it was worth fighting. And for the past seven years that is what I have been doing, fighting back against the condition."

Although there is no cure for dystonia, there are a number of treatments available to control the condition. Drugs are one option open to suffers, but as Jutta Moon points out, drugs don't work for everyone.

"Botulinum toxin injections are being used in some patients to combat the condition, but you cannot guarantee that it will be successful. There are also a number of other drugs which are used to make patients cope with dystonia in more comfort. Other options open to patients are treatments such as acupuncture, homeopathy and diet control, but again these treatments cannot be guaranteed to work for all patients."

Andy admits to trying all of the treatments which were available to him at the time. Ultimately though, Andy discovered that adapting and re-learning was the only real cure available to him.

"At the end of the day there is nothing much doctors can do, it depends where the dystonia is, obviously with many musicians and myself, it is in the hands. But I have heard of a drummer who got dystonia in his leg and could not operate his bass drum pedal. And he overcame the problem by customising his kit, which is something I can relate to, because I did the same sort of thing with my pick in order for me to play again," Andy enthuses.

"That is what Dystonia Debilitation is all about. It is the disability of a minuscule muscular movement, which can be overcome by altering what you do slightly in order to cornbat the condition."

Andy is a success story and an example to all those musicians who are suffering from dystonia, by proving that it is a condition which you can overcome.

"My advice to anyone would be, you have got to re-learn, do not let it grind you down. Get on with re-learning, don't give up on it. I was almost ready to give up and then I realised in time that the doctors were right. Now I am back playing with the band and doing what I did before, all due to being able to re-learn my instrument."