Debilitation In Musicians
A case study of musician
from The Hamsters
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
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
"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
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
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