Jewish World Review
http://www.jewishworldreview.com | (KRT) David Moore looks as if he's lifting a too-heavy barbell as he struggles to push out his name. His head cocks back, his eyes clench shut and his cheeks glow red and twitch. "Hi, I'm D-D-D D-D-D Da-David."
This can go on for 30 seconds. Sometimes he runs out of breath and must start over. Or he may just give up and apologize.
At 33, the Enumclaw, Wash., man has been stuttering for nearly all of his life, but he still cringes at the first impression he leaves.
"It's really embarrassing," he said. "You feel like that is all that they are going to notice about you."
That's why Moore was sold when he saw a new device help a stutterer speak his name fluently on a medical-miracles segment of "Oprah."
The SpeechEasy, a tiny hearing-aid-like device fits into the canal of one ear and plays back the stutterer's speech at a higher or lower pitch with a delay on the order of milliseconds. Imagine Minnie Mouse or Darth Vader inside your skull. The echo purportedly smooths stutterers' speech, though it isn't known why.
Not everyone is convinced. Some speech experts say the device is a gimmick, and once its novelty wears off, it could stop working and leave stutterers even worse off.
About 3 million people in the United States stutter. Some, like Moore, grow stuck repeating a single letter or syllable; others are struck silent midsentence.
A survey last year found that 80 percent of stutterers believe the condition has affected their school or work performance, and two-thirds said it interferes with social and family life.
Because scientists can't say why people stutter and don't know how to cure them, the SpeechEasy offers hope where there's been little before.
The device is so new it has no track record. It's expensive - up to $5,000 - and insurance won't cover it. But critics' biggest complaint is that by promising a quick fix , the SpeechEasy will keep stutterers - especially children - from learning the coping skills needed to deal with the emotional, social, even logistical challenges of the disorder.
Jesse Bilbao, 14, is often the target of sarcastic barbs hurled by middle-school classmates. His stutter renders him helpless to issue a snappy comeback.
"I have something really good to say back but I can't do it fast enough," he said.
Unlike many adolescents, Bilbao looks you straight in the eye when he speaks to you. But growing self-consciousness about his stutter is starting to send his eyes downward. At home, he is a jabbering ball of energy, said his mother, Shiela Halvorson. But at school he is reserved.
"I can tell he wants to say something but he doesn't," said Diane Peasley, his history teacher at Life Christian School in Tacoma, Wash.
Once an honor student, Jesse's grades have dropped over the past two years.
Recently, he gave an oral report on slavery in Peasley's class. To everyone watching, including his teacher, he did an admirable job, with some hesitant pauses but little stuttering. But like other stutterers, who often obsess over every minor slip, he was disappointed with his speech: "I skipped some parts and had to use some different words."
The mysteries of stuttering have confounded generations: Why are men three to four times more likely than women to stutter? Why is it that some kids grow out of it, and others don't?
Over the years, stuttering has been blamed on too-long tongues, icy mothers, repressed emotions and tickling a baby too much.
One early theory, that it was caused by carping parents, was tested in a 1939 experiment now known as the "monster" study in which researchers tried - and failed - to make Iowa orphans stutter by criticizing their speech.
Purported cures have been no less bizarre, ranging from speaking with a marble or penny in the mouth to surgical removal of part of the tongue.
Today, most researchers have scrapped the idea that the disorder is rooted in emotional problems. They now suspect a neurological basis. Psychological trauma may be involved in some cases, but anxiety and nervousness are now believed to be the result, not the cause, said J. Scott Yaruss, a speech researcher and spokesman for the National Stuttering Association.
Brain-imaging studies suggest stutterers have irregular brain activity and anatomical differences in the areas of the brain that control language and speech. Other research links stuttering with too much of the brain chemical dopamine, and suggests dopamine-blocking drugs such as the antipsychotic Zyprexa may help, though it's not widely prescribed for that purpose.
Scientists are also on the hunt for a genetic culprit. Half of stutterers have a relative who stutters, and studies of twins and adopted children suggest heredity is to blame. Many stutterers take comfort in such explanations: It means the problem is in their brains not their minds.
Lynda Voigt, a 58-year-old epidemiologist at Fred Hutchinson Cancer Research Center, said she privately wrestled with shame about her stuttering from the time she was a small child until her late-40s.
"Some of those feelings came from early theories of stuttering being more psychological, so I thought surely it was my fault," she said.
Then, about a decade ago, Voigt joined Seattle's chapter of the National Stuttering Association support group. That helped her come to terms with her stuttering, which comes in the form of long, strained pauses.
For most of her life she would stumble through a conversation, even a public speech, the whole time panicking that people thought she was demented. Now she acknowledges the difficulty and moves on.
She has learned to laugh at situations that once mortified her. Once she called a man she was newly dating.
"I could only make breathy sounds, so he thought it was an obscene phone call and said some not nice words to me and slammed down the phone," she chuckles.
The mainstream treatment for stuttering is speech therapy, which most stutterers go through either in public schools, private clinics or camp-style programs. Private therapy can run up to $100 a session and is not usually covered by insurance.
In small children, speech therapy can diminish stuttering, but speech pathologists can't identify which kids are among the three-fourths of preschool stutterers who will outgrow the problem. Once kids are well into grade school, it's not likely their stutter will ever go away completely, most speech experts agree.
Some programs teach stutterers to drag out syllables. Critics, such as stutterer and SpeechEasy inventor Joe Kalinowski, who underwent this type of therapy for years, said the result - sounding like a robot with weak batteries - is worse than stuttering.
Other programs, such as that offered by Seattle speech-language pathologist Susan Hamilton, focus on helping people stutter more fluently and confidently without so much struggling.
Hamilton, also an instructor at the University of Washington, worked with Voigt, teaching her how to ease into words, phrasing words into one breath group and keeping vocal cords vibrating.
Hamilton said the goal is for someone to practice these methods enough so that they "feel the movement like a golf swing." Voigt never got to that point. She said she finds the techniques make her concentrate too much on how she's speaking rather than on what she's saying and she uses them only for presentations.
David Moore underwent speech therapy in grade school but didn't find it useful. He assumed nothing could be done for him until he heard about the SpeechEasy.
Custom-fitted to the ear canal, the device utilizes the "choral effect." Experts aren't sure why this works, but for years noted that stutterers speak fluently when they speak in unison with someone else.
Kalinowski, a communications-sciences professor at East Carolina University, said he first noticed this phenomenon in himself when as a child he read the Lord's Prayer along with his church congregation and could say it perfectly. Alone, he tripped over nearly every word.
He theorizes an almost-simultaneous echo engages so-called mirror neurons, brain cells that allow babies and primates to imitate facial expressions and sounds. He proposes this innate mimicking ability overrides whatever in the brain causes stuttering.
Audiologists have toyed with the effect for years, but products harnessing it were ungainly, involving a fanny pack the size of a transistor radio, headphones and a microphone taped to the neck. Kalinowski's team shrunk the technology to an in-the-ear device.
So far about 2,000 people across the nation have purchased the SpeechEasy, and its maker, Janus Development Group, said it helps 80 percent to 90 percent of stutterers. Kalinowski's trials, which involved only eight people, showed, on average, a 69 percent reduction in stuttering in conversation and an 86 percent drop while reading after four months with the device. One-year results are awaited.
Earlier this month, David Moore and his wife, Crystal Moore, visited the Everett clinic of Nirvana & Associates, where speech pathologist Anna Parenna and nurse practitioner Bellisema Eban-Buonto recently began distributing the SpeechEasy.
His parents, Kathy and Gary Moore of Seattle, offered to cash out a retirement fund to help their son pay for the device, but he wanted to buy it on his own, so he used his tax refund and charged the rest.
His folks are wracked with guilt about their son's stuttering. Years ago, doctors diagnosed his stutter as a bid for attention and told the Moores to stop coddling him.
"We lowered the boom on him, so when it didn't go away we felt twice as guilty," Kathy Moore said.
Eban-Buonto warned David Moore that the SpeechEasy is not a cure. "It's more like glasses, it only helps when worn."
But when he first placed the device in his ear, it felt like a magic bullet, he said. He suddenly was able to say his name without a hitch. His wife choked back tears.
"I never really notice him stutter," she said. "But when you see him fail in his own eyes, it's the hardest thing."
There's something more at stake for David Moore. A Jehovah's Witness, he feels commanded by God to knock on doors and spread his gospel. He hopes the device will help his words do justice to his beliefs.
Parenna tallied his stuttering, finding he stumbled 1.18 times per sentence when reading without the device and .056 times with it; in conversation, he tripped up .86 times per sentence on his own compared with a .55 rate with it.
Troublesome words just slip out. Hearing David mention the movie "Daredevil," by name his dad chuckled. "He never would have made that word the first trip before."
The SpeechEasy has divided speech pathologists into two camps - "those who are selling it and those who are vehemently opposed to its marketing and lack of research," said Yaruss, an assistant professor of communication science and disorders at the University of Pittsburgh.
The SpeechEasy study was too small and, at four months, too short to indicate what the long-term outcome will be, he said. He predicts the device will go the way of white-noise machines and metronomes, gimmicks that distracted users enough that they stopped stuttering - temporarily. Stutterers might grow used to the SpeechEasy echo and eventually tune it out, he said, rendering the device useless sometime after its 30-day return policy expires.
Kalinowski points out that criticisms about lack of long-term data on the SpeechEasy can be lobbed right back at speech therapists. Because therapy is so individualized, there's little general evidence about how much it improves stuttering or for how long.
If adults can afford it and want to try the device, fine, Yaruss said, but he strongly discourages the device for kids.
"Childhood is the best time to treat stuttering with speech therapy; the older they get the harder it is to make improvements, and precious time will be lost," he said.
A key component to speech therapy is helping people overcome the shame, anxiety and what they perceive as barriers of stuttering, he said.
If the device fails, Yaruss said, besides their wallets being lightened, stutterers may be worse off if they haven't dealt with their shame and now are only happy with a level of fluency they can't maintain.
Parenna said it's not an either-or dilemma. Ideally, she said, the device should be used in concert with speech therapy so stutterers gain both immediate results and long-term coping skills.
Jesse Bilbao's parents, Shiela and Wayne Halvorson, are convinced the SpeechEasy is right for their son.
Last month, they took him to Nirvana & Associates to try it out. At first, he couldn't stop giggling at what he described as a chipmunk in his head. But after a few attempts, he was able to say, "Hello, my name is Jesse, and I love to ride my bike."
"Hello" and "Jesse" are words he usually avoids.
The Halvorsons are saving up for the device before Jesse heads to public high school in the fall.
Other stutterers, such as Voigt, have no interest in the treatment. She classifies the SpeechEasy echo with the speech-therapy techniques she finds distracting. Besides, she said, stuttering doesn't keep her from what she wants to do.
"I just expect people to wait for me," she said. "A person with a limp certainly expects people walking with her to slow down to match her pace; it seems to be a reasonable accommodation for someone to make."
David Moore has worked at Safeway since high school. A few years ago, he was moved from the produce department to cashiering, which requires thanking customers by their last name, a task that left him in cold sweats when the name began with D or B.
Several weeks after getting the SpeechEasy, he said he no longer panics when he spies the dreaded letters. He occasionally stutters, but most of the time words just slide out, leaving him looking like he'd just received a wonderful surprise.
"It's a little distracting and loud in my ear sometimes, but ... it's worth it," he said.
He said the biggest boon has been the little things. So far, he has called and made a nail appointment for his wife, ordered the tongue-twisting bay shrimp Caesar salad, given complicated directions to a stranger and said his name to anyone who will listen.
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