by Ryan J Thomson
These letters were orginally written in September 1996 to a web
page devoted to musician's disabilities. There was much discussion
of over use injury on the page, but almost nothing on Focal Dystonia.
I felt that it was important to spread the word of my own experiences
in order to help other persons with the same condition. Since
these communications (as of April, 1997) there has been much more
information available on the disorder More
info on dystonia
The letters follow:
Dear Paul, I just discovered your excellent page. I haven't had
a chance to explore all of the links yet, but I hope you have
a good source of focal dystonia info for other readers. I'm a
right handed violinist who has sucessfully relearned how to play
left handed. The good news is that I'm playing at a competent
level again. The bad news is that I was shuffled from doctor to
physical therapist to acupuncturist to nutritionist and every
other type of health practitioner known to man for almost 4 years
before I was finally diagnosed correctly with focal dystonia.
I even went to Dr Norris (who specializes in musician's disability)
who was very helpful in many ways and did his best, but tried
to look at my symptoms in terms of overuse, or stress, or using
my body in the wrong way.
I have a background in biology and western medicine, a masters
degree in psychology, and a great respect for alternative health
care, and I knew deep down that all of these health care folks
were missing the boat as I went from appointment to appointment.
Some of my friends began suggesting psychiatric help. After hearing
about a NOVA television program which mentioned focal dystonia
I tracked down a dystonia research team at Brigham and Women's
hospital in Boston who figured out my problem in less than 10
minutes. I wasn't crazy after all, I didn't have an over use problem(I
was born with a healthy and relaxed body that can easily sustain
many hours of continuous playing with no injury). I wasn't holding
my violin the "wrong way," as some medical specialists
had suggested.
I merely had a genetic disease, with these features: adult onset;
no known cure; it rarely goes into remission; its not usually
progressive(the good news). The very week I was diagnosed I obtained
a left handed violin and began learning to play all over again.
Everyone told me that it would be extremely hard to do and probably
impossible to regain my former skill level. Several doctors advised
against it. I couldn't see any theoretical reason why it could
not be done. My initial progress was very slow, but I kept at
it. I had 15 years experience teaching violin to beginners and
I merely did all of the things that I recommend to my students,
no matter how tedious. That was four years ago. My focal dystonia
symptoms on my right side of my body remain unchanged despite
completely changing the way I use that side of my body. I'm now
happily playing the violin left handed at about 90% of my former
skill level and still improving rapidly day by day. I intend to
be better than I used to be! regards, Ryan Thomson
Dear Paul, sure, you can reprint my previous letter, perhaps it
will help someone else! Here's more: I'd hope that any one with
some legitimate overuse or strain problem doesn't wrongly attribute
it to dystonia. I do think, however, that more medical practitioners
need to be aware of, and looking out for, genetic dystonia. Also,
it is now obvious to me that there is a viable alternative to
trying to "retrain" or bombard with Botulism toxin the
offending body parts to compensate for dystonia symptoms. (a typical
treatment for focal dystonia) That is: to find out what body parts
still work properly, and see if one can train them to do the musical
task!
Its just common sense: its much easier to get normally working
muscles to do a fine motor skill than muscles that don't respond
properly to signals from the brain. I know that this is not the
answer for everyone, but, for example, last year I met a former
professional full time guitar player, who had just been diagnosed
with focal dystonia in his fingering hand. The meeting was purely
by chance, he happened across me playing violin left handed at
a music festival, and wondered out loud why I was playing "backwards."
I explained that I had a shoulder disability, (never mentioning
the words focal dystonia) and could no longer play right handed,
so I had taught myself to play lefty because everything worked
properly on that side.
He then told me that he had just been diagnosed with a rare disease
that I probably had never heard of. He, also, had been diagnosed
with focal dystonia, and when I told him about myself, you could
see the light bulb go off in his head. It had never occured to
him to try playing left handed, but he had spent a couple of disappointing
years trying various physical treatments, trying to get his fingers
to work properly. He could still hardly play, even after all the
well intentioned (and expensive) therapy. After our talk, he went
off to locate a left handed guitar. I hope it worked out for him.
For dystonia resources, there is also a dystonia medical group
at the Mayo Clinic. There is an interesting story about this also.
I have a friend who teaches at Berkelee School of Music in Boston.
He periodically asks me to give guest lectures to his class on
my area of expertise in early country and traditional dance music.
One of the lectures I did was right after I had been diagnosed.
I happened to mention to the class about my problem, and they
became interested, asking lots of questions. At the end of the
class period, my friend was very excited about what I had talked
about and told me about this strange muscular problem that his
mother had in her neck, and her mother before her, that the doctors
had never been able to treat or explain.
I had talked about the genetic component of the problem and he
immediately saw the connection between my condition and that of
his mother. For her whole life she hadn't been able to control
the movement of her head, and found it embarrassing to go out
in public. (I'm sure that lots of visibly disabled people experience
this uncomfortable feeling) After the class he called his mother
in Minnesota and she was able to get help at the Mayo dystonia
clinic.
One of the saddest things about dystonia is that many lay people,
and even highly educated medical professionals, just refuse to
believe that a person who looks normal in every other way has
some funny little thing that they can't do or a muscle they can't
control: "What do you mean, you can't move your violin bow
back and forth? Of course you can, its easy, perhaps you're holding
it wrong."
As someone who has been very athletic, coordinated, and active
all my life I found it intensely infuriating and frustrating when
I found it impossible to communicate my symptoms in a way which
people could understand. Its very simple to me: I tell my arm
to do some easy little thing, it does something unexpected. I
try to compensate by instructing it to do the previous unexpected
thing, and it refuses and does a third thing. And so on. Unless
you've experienced it, you can't possibly imagine what is is like.
(I remember that when I was a child, I saw someone with Parkinson's
disease, and wondered why they just didn't hold their hand still
so it wouldn't shake)
Anyway, I'll get off the band wagon and plug the Dystonia Medical
Research Foundation:
One East Wacker Drive, Suite 2430, Chicago,
IL 60601-1905, phone: 312-755-0198,
fax: 312-803-0138, email: dystfndt@aol.com
They put out an excellent newsletter and
are now up to their fifth international symposium. (The major
portion of serious research in dystonia is very recent. Thanks
for your interest, Ryan Thomson
Dear Paul, Yes, I'm right handed. Yes it is true that sometimes
dystonia spreads to other parts of the body, and can spread from
one side to another. However, there is tons of new research in
the past 3 or 4 years due to lots of grants to dystonia research
labs. The latest findings show that the later in life one develops
symptoms, the less likely they are to spread from one location
to another. I'm probably in pretty good shape then, I hope. On
the other hand, I have become acquainted with a little girl in
Keene, NH, with dystonia. Her dystonia has been spreading, and
she is having a really hard time adjusting to her disease, partly
because she is so young and doesn't understand why she is different
from the other kids.
She has lost the ability to control her arms. Fortunately, she
has very supportive parents and siblings, and has a very positive
additude herself. Her legs still work fine, and she has been running,
skiing, and doing lots of other things that little kids do. She
has also become involved with a dystonia support group in NH.
Regarding one of your points, there have been large advances in
the genetic work in the past 2 years. The particular chromosome
involved has been positively located(#9), and the specific gene(DYTI)
is close to being pinpointed. The genetic transmission is dominant
in childhood onset, and is more prevalent in certain ethnic populations.
On your other point, my experience suggests that there is no reason
why anyone can't learn to play left or right handed. There is
a far bigger hassle for the instrument makers than for the musicians!
Ryan.
NOTES ADDED 3/16/99 in response to a request to discribe my symptoms:
Besides bowing a violin, I have some trouble
brushing my teeth, I have to use two hands on the brush to really
control the angle and pressure. My right hand provides the strength,
and my left helps guide the right hand in the proper direction.
Another minor annoyance is when I extend my arm straight out from
my body, like to put a cup of coffee down on a table. My arm wobbles,
and the cup sometimes drops too hard on the table, almost spilling
the contents.
The muscles in my limbs, fingers, hands, arm, are fine. What doesn't
work are some muscles in my shoulder blade that stabilize my arm.
When I exert force in certain directions with my hand, my shoulder
flops around. Fortunately though, I can do many other things fine,
depending upon what muscles are needed. I can hammer a nail, throw
a frisbe, swing an ax, eat with a spoon and fork, etc, with no
problem.
I can play right handed to a certain extent because I can force
my right arm to move back and forth while holding a bow. Because
of my shoulder wobbling around, however, I can't control the speed,
pressure, and alignment of the bow. Its like trying to pluck a
string with a pick, and only hitting the string 2 out of 3 tries!
By the way. I discovered an obscure IRS rule that says that if
your disability only affects your ability to play your instrument,
and not other life activities, and you depend upon music making
for your living, then you can deduct 100% of the medical treatment.
(sort of like deducting the cost of repairing your guitar as a
business expense) That means, for example, that if you break your
arm, that's not deductable, because breaking your arm affects
all sorts of other daily activities besides music making.
Working on these letters helped me collect
information for my books:
Playing Violin and Fiddle Left Handed,
which is a compendium of info on left handed playing from the
experiences of over 100 other lefty players, including a number
of other fiddlers and classical violinists alike who were also
able to sucessfully learn to play play left handed despite a disability.
Left Handed
Fiddling for Beginners, which a
"Teach Yourself" method for folk style fiddling, and
includes a 60 minute CD.)
copyright ©1996 Ryan J Thomson