Ryan & Brennish Thomson

Focal Dystonia as a cause of musician's disability

by Ryan J Thomson

These letters were originally 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. Since I was able to overcome my disability 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

 

Hear me speak about being a musician who overcame focal dystonia.  Search "Ryan Thomson dystonia" on You Tube.

 

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 successfully 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 occurred 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 Berklee 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.

 

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 attitude 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 describe 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 frisbee, 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 deductible, because breaking your arm affects all sorts of other daily activities besides music making.

 

Click here to read an essay I wrote on Making Music Left Handed.

 

Hear me speak about being a musician who overcame focal dystonia.  Search "Ryan Thomson dystonia" on You Tube.

 

Working on these letters also 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 successfully 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 Video DVD)

This article written by Ryan J Thomson, 1996