Focal Dystonia

The Cleveland Clinic* tells us, “Focal dystonia is a neurological disorder. It causes involuntary muscle contractions in one body part. You may have muscle twitches in your neck, face, jaw, feet or hands. Focal dystonia that affects hands and wrists is common in musicians, athletes and writers. In golfers and baseball players, people often call focal dystonia ‘the Yips.’ . . . Although dystonia is one of the most common types of movement disorders, focal dystonia is relatively rare. It affects about 3 in every 10,000 people in the United States. . . . Focal dystonia is idiopathic, which means experts can’t point to one factor that causes it.”

     [*NOTE: the webpage has been updated; the quote is from an earlier iteration.]

There can be a psychological component as well, but which is the chicken and which the egg is a question. Genetics can be a factor. In 2014, The New Yorker published an excellent article on the on the Yips.

Musician’s Dystonia can be soul-crushing. It can especially tough when it is not taken seriously or doubted. I had phone conversation years ago with a person in tears because their teacher told them they were faking it. Sometimes what appears to be dystonia is not, but faking it seems vanishingly unlikely. My personal experience with dystonia is discussed in Decline & Fall.

The Dystonia Medical Research Foundation tells us, “Experts estimate about 1% of professional musicians are affected by dystonia, but there are likely large numbers of musicians living with symptoms who remain unidentified. Almost all individuals with musician’s dystonia are classically trained, and most are male. Up to 25% have a family history of dystonia.” National Institutes of Medicine’s MedlinePlus.com says “. . . at least 10 percent of affected individuals have a family history of focal dystonia.” Interestingly, the Cleveland Clinic indicates, “Women and people assigned female at birth develop focal dystonia about three times as often as men and people assigned male at birth do.”

Larry Zalkind frankly discusses his dystonia, his recovery, and a genetic component, in great depth, on Anthony Plog‘s podcast here. Larry says, “There are 28 dystonia genes. . . . I don’t have any dystonia genes . . . [but] the surgeon who did my surgery said, ‘Oh you have a gene; we just haven’t discovered it yet.’”

Much remains to be learned.

Self-diagnosis is a very bad idea, over-diagnosis may be a thing, and psyching one’s self into a problem is possible. A neurologist – preferably with expertise in embouchure dystonia – should make any diagnosis. Travel may be involved. Dr. Steven Frucht helped me; he is a world-class expert in embouchure dystonia.

However, diagnosis is NOT treatment. There are many therapies for dystonia; some work for some; others for others; some not at all. I know how I got out from under dystonia; I’m not sure I could teach it. It presents differently in different individuals. I am pretty sure Alexander Technique and Body Mapping can help prevent it.

Embouchure Dystonia: Mind Over Grey Matter, a presentation by Dr. Peter Iltis, Professor of Kinesiology at Gordon College, is just excellent.

MedlinePlus has more information here.

Musician’s Wellness has helped some.

David Vining’s Dystonia Narrative is revealing.

I have it on good authority that The Embouchure Project is the real deal. (they also have a FaceBook Group.) These are their stated principles:

• We will take no money. While professionals in the network will charge for their time as usual, The Embouchure Project is completely free to access.
• We do not have all the answers. While we hope to help, we do not have one philosophy that governs our recommendations. We believe that each person finds their own path to recovery. We facilitate the beginning of that journey.
• Science comes first. We want the network to help right now, with the goal of improving outcomes by formally studying potential solutions and proving efficacy. The long term goals is to eliminate Embouchure Syndrome and Dystonia.

 

“NOTE: Gabriel Radford, one of the founders of The Embouchure Project has written: “. . . if someone claims they can ‘fix you’ that you should be very suspicious. If someone claims to have the solution that no one else has, you should look the other way. Up to 1/3 of people with embouchure dystonia will not get better no matter what they do, and no matter who they see, and no matter how much time it takes. You are not here because it is your fault. You didn’t do anything wrong. You have a diagnosable condition that there is no known cure for.”

IMPORTANT: Musicians’ Dystonia is rare. Again, amateur/self-diagnosis is a serious mistake – and can lead down a rabbit-hole, through a labyrinth, with a can-of-worms at the bottom.