September 13, 2006

“Stuttering is one of the last diseases it’s still O.K. to make fun of"

from an article in the new york times:

To Fight Stuttering, Doctors Look at the Brain

As a child who stuttered badly, Gerald Maguire learned the tricks of coping.

When called upon in class, he would sometimes answer in the voice of Elmer Fudd or Donald Duck because he didn’t stutter when imitating someone. He found easier-to-say synonyms for words that stymied him. And he almost never made phone calls because he stumbled over a phrase for which there was no substitute: his own name.

Now Dr. Maguire, a psychiatrist at the University of California Irvine, wants to cure the ailment that afflicts him and an estimated three million Americans. He is searching for a drug to treat stuttering, organizing clinical trials and even testing treatments on himself.

He could be getting closer. In May, Indevus Pharmaceuticals announced what it called encouraging results from the largest clinical trial ever of a drug for stuttering. Even larger trials are still needed, which could take two or three years. But if they succeed, the drug, pagoclone, could become the first medical treatment approved for stuttering. [...]

Those who stutter say the condition — marked by repetitions of syllables, long silences and the contortion of the face as a person seems to try to force the words out — can exact a terrible emotional toll. Many talk of jobs or promotions not received, of relationships broken or not pursued. Some structure their entire lives to avoid having to speak unnecessarily or to avoid being teased.

“Stuttering is one of the last diseases it’s still O.K. to make fun of,” said Ernie Canadeo, an advertising executive from Oyster Bay, N.Y., who stutters. Alan Rabinowitz, a noted wildlife conservationist, has told of how when called upon by a teacher in elementary school, he once avoided answering by stabbing his hand with a pencil so he would be taken to the hospital. [...]

One of the more popular theories from a few decades ago was that parents caused stuttering by reacting negatively to the repetitions that normally occur when children first learn to talk. But a consensus is growing that stuttering is a neurological condition, though its exact nature is not clear. Emotional stress can make stuttering worse, however. Brain imaging studies have shown that the brains of people who stammer behave differently from those of people who don’t when it comes to processing speech. [...]

[S]tuttering has been primarily treated by speech therapists, who can’t prescribe drugs and might object to the condition being treated as a medical one. [...] Pagoclone, the newest candidate [for a drug against stuttering], was initially tested as a treatment for panic disorder and anxiety. Results were mixed, and Pfizer, which had the rights to the drug, returned them to Indevus. But in those trials a few people who stuttered said their speech improved during the trial. So Indevus got a patent covering the use of the drug for stuttering and began the clinical trial, in which 88 patients got the drug and 44 a placebo.

The participants were videotaped in conversation and reading, both before starting on the drug or a placebo and four and eight weeks afterward. Evaluators, blinded to whether the patient was on the drug or the placebo when the video was made, counted the proportion of syllables stuttered and the duration of the three longest stutters. In a separate measure, clinicians evaluated the speech of their patients. In most cases, those who got the drug did better than those who got the placebo by a statistically significant amount.

the left picture shows the brain activity of a non-stutterer. you can see that several brain areas are active. the two pcitures in the middle show brain activity of a stutterer. you can see that many areas are active. this may indicate that speech production is not as automatic as it should be. finally, the right picture shows brain activity of a stutterer after behavioral (not drug) treatment. the brain seems to have "calmed down".

if you find it difficult to imagine what it is like to live with a speech impediment, here's a book recommendation for you: black swan green, by david mitchell. the book, set in england in the 1980s, follows one year in the life of 13-year-old jason taylor. jason is a stammerer, and he lives in fear of being discovered.

the guardian wrote:
"The most original aspect of Jason's voice is his powerful evocation of what it is like to have a stammer. A phantom called Hangman lives inside his head and physically blocks certain words that he is about to say. Jason has to try to find a synonym that does not begin with the forbidden letters N or S; otherwise he is taken to be stupid, as in a tragicomic moment when he cannot give the right answer to an elementary arithmetic question, because the answer is 99. He relates conversations in which his mind is always racing ahead of his tongue, desperately redrafting his thoughts, which generates a novel kind of suspense. The novel cleverly implies, without having to insist, that Jason's growing skills in inventive circumlocution, cheered on by the reader, are tied up with his hopes as a writer."

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