Date: Mon, 09 Sep 1996 16:43:29 +0000 From: Ryan Thomson Reply-To: cfiddle@tiac.net Organization: Captain Fiddle Music To: mpaul@unlinfo.unl.edu Subject: check out focal dystonia! 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 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 and even my family began suggesting psychiatric help. Finally, three frustrating years later, I discovered 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, even now at age 47), I wasn't holding my violin the "wrong way." I merely had a genetic disease, with adult onset, with no known cure, that rarely goes into remission, and isn't usually progressive. I immediately obtained a left handed violin and began learning to play all over again. Everyone said it would be extremely hard and probably impossible. 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 happily playing the violin left handed at about 90% of my former skill level and still improving day by day. I intend to be better than I used to be! regards, Ryan Thomson: http://www.tiac.net/users/cfiddle Date: Wed, 11 Sep 1996 01:59:05 +0000 From: Ryan Thomson Reply-To: cfiddle@tiac.net Organization: Captain Fiddle Music To: mpaul@unlinfo.unl.edu Subject: more focal dystonia Dear Paul, sure, you can use my 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. 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, of course, had the same thing as me, and when I told him so, 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 therapys, 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. 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 disabled people experience this) After the class he called his mother(his family is from 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 when I was a little kid, and saw someone with Parkinson's disease, and wondered why they just didn't tense up their muscles and hold their hand still so it wouldn't shake) Now I know! Anyway, I'll get off the band wagon and mention 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. When I first developed my symptoms, the foundation didn't exist yet, as far as I know. Thanks for your interest, Ryan Thomson