Focal Dystonia

Tommy Lovelace is a guitarist with Focal Dystonia. His message in our old guestbook inspired this page. Tommy lives is from Rockport, Texas, USA.

Message from Tommy:

...I made up my mind to keep trying all available options before going to left-handed playing. I taught myself to write left-handed, shave, eat, drink, type with 5 fingers on the left hand and the ones that aren't curled up on the right hand! I guess I drew the line on guitar playing. Call it stubborn (or stupid!).

I gave up playing for this stuff for 10 years and sold my 1974 D-35. I returned 2 1/2 years ago and bought a brand new D1R w/ piezo, etc., which I dearly love! Before I give it up again, I'll send my Martin back and have it switched to left-handed.

I purchased a small beginner's left-handed guitar and started teaching myself again. If you ever wonder what a beginning student or a person in rehab goes through, try playing left-handed!

I have also decided to go back for very light, graduated botox injections. Those, combined with Ritalin or Adderal (Yes - The ADHD medication. This is a chemical imbalance in the brain.) allow me to hit about 75%, or better, of the notes. But, when it wears off in the middle of a gig I'm reduced to banging out rhythm with my middle finger! Better than nothing! I'm teaching my rhythm player my lead licks.

By the way, I found great picks at Guitar Emporium in Louisville and Cotten's in Nashville. They are made by Fred Smith and are called "Speed Picks", he also makes the "Slick Pick". Since I strum with the finger that is compliant at the time, I am going to invent my own "finger pick" that I can use on my "good" fingers. This pick will be like a Fred Smith Speed Pick but will fit over my index and middle fingers like a Sitar pick. Fred Kelly is interested in making me a prototype of my pick idea.

Fingernails are OK but I need a pick strumming sound for my music. I am not able to grip a flat pick. I have to glue one on! Right now my right 3 fingers are curled up like boiled shrimps as I try to type this to you. May as well laugh about it!

The support is active but I have not received any response from the email I have posted. I have spent literally hours on the net referencing dytonia pages. New ones come up all time so I have to keep my ear to the ground. I am always looking. Maybe someday they will find a cure. They have located the gene, that's a start!

I got this stuff in 1975 after years of playing hard, fast bluegrass rhthym guitar, all day and all night.

My advise to new guitarists is this:
WARM UP PROPERLY,
TAKE FREQUENT BREAKS
DRINK 8 GLASSES OF WATER EACH DAY!

What are the dystonias?

The dystonias are movement disorders in which sustained muscle contractions cause twisting and repetitive movements or abnormal postures. The movements, which are involuntary and sometimes painful, may affect a single muscle; a group of muscles such as those in the arms, legs, or neck; or the entire body. Diminished intelligence and emotional imbalance are not usually features of the dystonias. Focal dystonia is localized to a specific part of the body.

What are the symptoms?

Early symptoms may include a deterioration in handwriting after writing several lines, foot cramps, and a tendency of one foot to pull up or drag after running or walking some distance. The neck may turn or pull involuntarily, especially when tired. Other possible symptoms are tremor and voice or speech difficulties. The initial symptoms can be very mild and may be noticeable only after prolonged exertion, stress, or fatigue. Over a period of time, the symptoms may become more noticeable and widespread and be unrelenting; sometimes, however, there is little or no progression.

Where can I get more information?

Six privately supported voluntary health agencies supply information about the dystonias and their own activities and services:
American Speech-Language-Hearing Association
10801 Rockville Pike
Rockville, Maryland 20852
(301) 571-0457
(800) 638-8255 (toll free, except Alaska, Hawaii and Maryland)

Benign Essential Blepharospasm Research Foundation, Inc.
P.O. Box 12468, 3155 Stagg Drive, Suite 110
Beaumont, Texas 77726-2568
(409) 832-0788

Dystonia Medical Research Foundation
One East Wacker Drive, Suite 2430
Chicago, Illinois 60601-1905
(312) 755-0198

National Foundation for Jewish Genetic Diseases, Inc.
250 Park Avenue, Suite 1000
New York, New York 10177
(212) 371-1030

National Spasmodic Torticollis Association, Inc.
P.O. Box 5849, Orange County, California 92863-5849
(800) HURTFUL (487-8385)

For further information, contact:
National Institute of Neurological Disorders and Stroke
Office of Scientific and Health Reports
Building 31, Room 8A16, Bethesda, Maryland 20892
(301)496-5751 (800) 352-9424

Focal Dystonia as a cause of musician's disability

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

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.

Piano player learns violin

Thank you for your posting on dystonia in musicians. I had studied piano since age 5, and played all of my life. After obtaining a Bachelor of Music Performance, I went on to graduate school. By age 23, my right hand wasn't what it used to be, and I blamed myself for not being able to play up to par. I decided that I should seek a new vocation, and obtained a Bachelor of Science in physics. I continued to play well for some years, but by the time I was thirty, my right hand (fingers 3, 4 and 5) would not function properly. I fell into a deep depression. I was finally diagnosed with focal dystonia, and I tried everything from Klonopin to Botox. Nothing worked.

My wife and I bought a house two years ago, and much to my surprise, a violinist in the Pittsburgh Symphony lived two doors down. I decided to begin violin lessons with him in 1996. I am now the proud owner of a beautiful Helmuth Keller violin (being a Sr. Engineer now, I could afford a decent fiddle), and I love playing it. I still find it frustrating that I cannot play the piano anymore, but I've found a new discipline of music that I can enjoy just as much if not more. I have learned to welcome the challenge of "starting over".

Fortunately I have no problems bowing whatsoever from the dystonia. It is becoming very natural, and my right hand still remains relaxed.

I found your letter about the violinist with dystonia inspiring in that he/she would make the best of a bad situation. If you would like to share my letter with others, you may feel free to do so.
Best Regards, Ronald Birkelbach

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