SPEAKING OUT
For stutterers, it’s not always easy. Now, Jeffrey Shames is ready.

BY JAMIE TALAN
NEWSDAY STAFF WRITER
Jeffrey Shames always went for the silent roles.
As a child, he’d pass up a lobster dinner - his favorite - because words beginning with “l” were hard for him to say. It didn’t stop there. Words beginning with vowels came to an abrupt halt in his mouth. No matter how hard he tried, words never flowed smoothly for Shames.

Now, at 47, this lifelong stutterer is taking on a speaking role - as a mentor to a younger generation of stutterers. He’s featured in a very personal documentary, “Spit It Out,” and in the opening scene he is seen sitting on a beach, his mouth filled with stones - one of the first known “therapies” on record for stuttering. Shames was trying to recapture the moments when the ancient Greek orator Demosthenes would stand at the ocean with stones in his mouth to cure his stuttering. “It’s dramatic for the film,” he said. “But it doesn’t work.”

Shame in childhood
In his childhood, circa 1960s, the world did not embrace those with a stammer. Shames recounts his father’s shame and opposition to therapy for his son. His mother, who was more sympathetic but unwilling to talk openly about her child’s trouble spitting out words, did not reveal that she, too, had a childhood stutter until Shames began interviewing her for the film.

“A large part of a stutterer’s life is what they do to not stutter,” said Shames, who works for a nonprofit housing agency in Manhattan. He describes the film, which he wrote and produced, as a journey to self-acceptance. Even as he was making it, he joined a theater group for people who stutter - an experience that he said gave him a shot of confidence he’d never felt before.

There are about 3 million people in the United States who stutter. The problem often begins in childhood. More than half stop stuttering in adolescence or later, but scientists have yet to understand why. Shames’ mother stopped stuttering when she left for college and was hoping her son would have the same experience.

Scientists have yet to nail down the causes of stuttering. One who devotes a sizable part of his research to the subject is a doctor who has spent much of his life stuttering. The work of Dr. Gerald Maguire, an associate professor of psychiatry at the University of California at Irvine, has led to some of the first medications that reduce the frequency of a person’s stutter. The way these drugs work has, in turn, identified a basic brain pathology that may give rise to stuttering.

A brain abnormality
“Stuttering is related to an abnormality in the timing and the initiation of speech,” Maguire said in an interview. Brain scans of stutterers show an abnormality in the region known as the striatum, which regulates timing. The striatum loops together activity in the region where words are formed with the region that is active when words are spoken. Maguire said the striatum is far less active in stutterers.

The striatum is rich with the brain chemical dopamine, and Maguire found dopamine levels in the striatum of stutterers are 50 to 200 percent higher than normal. He has been testing olanzapine, a schizophrenia drug that works to block dopamine, and has been using it himself for seven years. He credits the medicine for his near-fluid speech; during a telephone interview, his stutter is barely noticeable. The drug and other anti-psychotic medicines have not been approved for stuttering, however, and are not recommended for children, he added.

For Shames, a stuttering life has become worth living. By accepting his stutter, he is more comfortable with himself, he said. He does not take a medication and, like most stutterers, has developed a number of secondary problems in an attempt to deal with his stutter: He closes his eyes, swallows and tries to use “ummm” so words beginning with vowels flow off the “ummm.” His neck and mouth tense up, and he tries to speak very quickly to get in as many words as possible before the next speech block. Some people move their heads, some kick their heels, and others hold their breath before attempting a problematic word.

There are a variety of speech therapies, and some stutterers wind up trying many of them. Shames spent much of his adult life learning these anti-stuttering techniques but said he hasn’t relied on them in about a decade.

Singular ways of speaking
Each stutterer has a singular way of speaking. Shames pauses before speaking a tricky word. He said most stutterers have problems with hard consonants like b, m and n. Some people memorize substitute words. “People become a walking thesaurus,” Shames said.
Some stutterers are also turning to devices that promise help. Jeffrey J. Felixbrod is a clinical psychologist from Manhasset who wears a miniature electronic device in his ear that he says controls his stuttering. He has been promoting and selling the device, called a Fluency Master, for several years.

When Felixbrod was a child, the prominent theory was that stuttering was a learned, though abnormal, speaking pattern.
He supports the theory that stuttering is caused by a problem in the muscle movements that are called upon to generate speech. The muscles, he said, are overstepping their boundaries, triggering tension and making the mouth move incorrectly.

The Fluency Master
Some research has shown that the speech muscles of stutterers do not perform the correct sequence of movements necessary to produce fluent speech. Felixbrod said a tiny microphone in the Fluency Master detects the signal from the vocal cords, then transmits it to circuitry housed in a tiny hearing aid case worn behind the ear. The device amplifies the signal. The brain uses the enhanced signal to guide speech muscle movements. He said he spent more than 40 years stuttering and almost lost his job a few times because his supervisors thought patients wouldn’t be able to deal with his strange sounds and skipped words.

Other devices on the market play tones that distract the speaker from thinking too much about what he is trying to say.
Felixbrod compares the various devices, which are not federally regulated, to glasses or a hearing aid. Studies have shown that they can reduce stuttering from 20 syllables per 100 words to four syllables per 100 words.

“For the first time in my life, I was ordering things off a menu,” said Felixbrod, who celebrated his 50th birthday four years ago with the new device in place. He became president of the company that develops and sells it. (It costs $3,500.)
Maguire said cognitive or behavioral therapy is also useful in treating the social anxieties that develop on the heels of stuttering.

Film festival premiere
These days, Shames enthusiastically talks about stuttering. As he was writing the documentary, he hired Jonathan Skurnik, an independent cinematographer in New York City, to direct it. The film premiered at the international film festival at the Brooklyn Museum recently and was shown again two weeks ago during the annual meeting of the National Stutterers Association in Baltimore.

“I want this to help children understand that they can feel comfortable with themselves,” he said. “And I want people who don’t stutter to understand that this is nothing worthy of a snicker, or slapstick humor.”

“ When I was young, we really suffered in silence,” Shames said recently. “Now, there are support groups and associations, and we build our world around other people who stutter. We help one another. “ It’s a big difference.”