sissydude LOVES: from dystonia to dancing to madonna (via laura f. via globe and mail)

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GLOBE & MAIL by WENCY LEUNG

Joaquin Farias has spent the past two decades trying to understand dystonia, a confounding and sometimes debilitating syndrome believed to be the third-most-common neurological movement disorder, after essential tremor and Parkinson’s disease.

His work has been influenced by his own experience. As a 21-year-old studying to become a professional musician in Spain, he began to develop dystonia in his right hand. His fingers would involuntarily curl into a fist. Gradually, it became almost impossible to play the piano.

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Doctors recommended only rest and muscle relaxants, dismissing it as a persistent condition of unknown cause. But determined to regain fluid mobility, he took it upon himself to relearn how to unclench his hand by inventing exercises, such as trying to pick up objects over and over. It took two years of tenacious self-training to, as he puts it, “move right” again. It took three more years to “feel right,” to perform those same movements without inexplicable accompanying feelings of emotional distress.

rest of the story after the jump…

Dr. Farias, who holds a PhD in medicine and sciences applied to sport and exercise, has used these self-taught techniques to develop a cost-effective and drug-free way to rehabilitate others with the condition. His approach relies on neuroplasticity, the brain’s ability to rewire itself. Training clients to move again, he says, helps their brains learn to process motor and sensory signals normally again.

He has seen astounding results. Now an adjunct professor with the University of Toronto’s Music and Health Research Collaboratory, he shows no sign of impairment and has likewise helped hundreds of clients, including professional musicians and dancers.

He believes he is on to something groundbreaking, yet his methods are not widely recognized, in part because dystonia is so ill understood.

The actual prevalence of dystonia is unknown, though there are several forms of the disorder. Generalized dystonia, which affects the whole body, may be genetic, caused by stroke or tumours in the brain, or related to other conditions such as Parkinson’s disease, according to Dr. Robert Chen, a professor of neurology at the University of Toronto and senior scientist at the Toronto Western Research Institute, who specializes in movement disorders.

Focal dystonia, meanwhile, affects one muscle or a group of muscles, and often has no obvious cause. Because focal dystonia may be associated with tasks involving repetitive movements, it’s sometimes known as writer’s cramp or musician’s dystonias. Standard treatments depend on the type of dystonia, but generally involve medication, injections of botulinum toxin, deep brain stimulation, or a combination, Dr. Chen says. “We think dystonia is not only a disorder of the movement, it’s also a disorder of how the sensation – the input – is being processed in the brain,” he explains.

Dr. Farias takes this idea further. He hypothesizes that in dystonia, the insular cortex, a processing hub of the brain that’s critical for controlling motions and emotions, mixes up sensations of pain and emotions, and reacts by sending signals to the body to physically avoid pain or emotional stress. Such a mix-up could explain why focal dystonia in musicians, dancers and athletes gets worse with practice, as repetition may reinforce faulty neuropathways. (The insular cortex also plays a role in attention – which is noteworthy, since Dr. Farias’s clients tend to move freely when distracted.) “The same way people repress emotions … it looks like we can also repress motions.”

In some cases, Dr. Farias says, dystonia can be brought on by an intense experience, whether it’s a car accident that triggers the brain to inhibit movement toward the side of the body that was affected, or such as a fear of failure at a critical juncture in a singer’s career, which could cause the vocal chords to seize up.

He also hypothesizes that individuals with hyper-plastic brains – those who are exceptionally fast learners – may be more susceptible to the disorder.

Unlocking repressed motions can’t be done through talk therapy, but through movement, he believes, since dystonia involves areas of the brain involved in motor function, rather than language. The first step is to determine, and make clients aware of, the motions they have repressed. Then, he trains them to recover those lost movements, and to repeat them until the movements feel comfortable, neutralizing any associated sensations of pain or distress. He does this by getting his clients to mimic his own movement, to practise in front of a mirror, and to move in different contexts. For example, if clients show no signs of dystonia when dancing, Dr. Farias trains them to transfer those movements to walking or standing.

After four consecutive days (at a cost of $1,200 for six hours of sessions), Most of his clients are able to regain some lost movements after a few days of training, he says. The process of getting them to “feel right” while doing those motions, however, may take much longer. Although he started off working with musicians with focal dystonia, he has found his approach has worked on clients with various forms, including general dystonia related to Parkinson’s disease. But he acknowledges he is still refining his methods and has developed only an alternative to traditional therapy, not a cure.

“It’s an interesting approach,” Dr. Chen notes, adding that researchers in Germany, Switzerland and the U.S. also have used neuroplastic approaches for dystonia with promising results. But proper trials are still needed.

Dr. Farias, however, says it has been “impossible” to find financing to research his approach formally. After some hesitation, he explains: “Nobody cares because you cannot make money [from it].”

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