Phyllis S. Peterson's voice has betrayed her for decades. The
75-year-old Portland resident has a neurological condition called
spasmodic dysphonia, which has reduced her speech to puffs of words
she can only force out slowly and quietly.
For nine weeks, Khalid El-Sayed's voice has taken a vacation. The
third-year University of Connecticut medical student from New
Britain hopes that treating his acid reflux will restore his voice
before he begins a rotation next month at Hartford Hospital.
Although research and imaging technology have given doctors much
clearer insights into the workings of the human voice, much about
speech - a defining human ability - remains a mystery.
While doctors still are searching for both the cause of
Peterson's disease and a treatment for it, many other speech
disorders, such as El-Sayed's, can now be diagnosed and treated -
and possibly even prevented.
Although the message sometimes gets lost in the clamor of more
publicized public health messages, people need to pay close
attention to the well-being of their own voices, which can be
silenced by stroke, illness, disease or misuse, speech pathologists
say.
Cases like Peterson's and El-Sayed's shed light on the importance
of speech, said Dr. Denis Lafreniere, director of the Voice and
Speech Clinic at the University of Connecticut Health Center.
"Every teacher, lawyer and doctor or person who answers phones
can't do their job without speech," he said. "There are people like
Pavarotti, for whom an inability to hit a single note is a disaster,
and other people who just want to be able to talk to their family."
The public hears little about speech disorders unless a celebrity
singer becomes afflicted, doctors say. Few people give their voice a
thought - unless they lose it.
"I feel that if I were blind or crippled, people would understand
more," Peterson said. "People don't seem to understand how it
affects your life."
Peterson's unusual condition, which afflicts about 50,000
Americans, is a neurological disorder that leads to a malfunction of
the muscles that control the vocal cords. Her labored speech is a
sort of forced march of sound. Through years of practice, she can
make her words audible, but they are very soft.
"My husband says he can't hear me," she said. "When I go out to
lunch, I have to go someplace that isn't too noisy."
She first experienced problems in high school when she had
trouble pronouncing the letter "H." Doctors at the time blamed her
condition on the effects of air conditioning, which had just been
introduced.
For much of her life, the problem was not much more than a
nuisance, but in her 40s, the condition worsened and doctors still
could not explain why. Some doctors suggested her disorder might be
psychological. Once, a customer in the flower shop where she worked
accused her of being drunk.
Even today, patients with spasmodic dysphonia can go years
without getting a correct diagnosis, Lafreniere said. In 1978, a
pathologist at UConn correctly diagnosed Peterson's ailment. While
she was relieved to know it had a name, she was disheartened to
learn there was no treatment.
Spasmodic dysphonia is part of a family of neurological disorders
known as dystonias - an excessive contraction that can occur in a
variety muscle groups, including those that work the eyes, neck or
hands. Writer's cramp is perhaps the best known dystonia. In the
past decade, researchers discovered that the toxin Botox can
successfully treat the adductor type of spasmodic dysphonia, a
malfunction of muscles that bring the vocal cords together.
Unfortunately for Peterson, Botox does not work on her form of the
disease, in which there is an excessive contraction of muscles that
keep the vocal cords apart.
"The operating theory is that the larynx is giving the brain
incorrect information," Lafreniere said.
Scientists have found it difficult to study voice disorders such
as spasmodic dysphonia because there are no animal models on which
to test different theories, said Dr. Christy Ludlow of the National
Institute of Neurological Disorders and Stroke, part of the National
Institutes of Health.
The study of how speech disorders originate may shed light on why
humans can talk and why great apes, our closest genetic cousins,
cannot, said Ludlow, who is conducting brain imaging studies on
people with dysphonia.
Understanding the neurological basis of speech may also lead to
new treatments for speech problems caused by stroke, traumatic brain
injuries and Parkinson's disease, she said.
Many speech disorders, however, do not have a neurological basis
and are more susceptible to treatment. For instance, acid reflux,
like that suffered by El-Sayed, and allergies can cause lesions or
polyps on the vocal cords that affect speech. In fact, speech
problems, rather than heartburn, are often the first symptom of acid
reflux, Lafreniere said. Treating the underlying problem usually
leads to an improvement in speech, he said.
Some common causes of voice problems are overuse - such as by
singers or by screaming children - and lingering effects of the
colds that cause laryngitis.
In almost all cases, even in some cases of cancer, trained speech
pathologists can help patients improve their voices, Lafreniere
said.
Imaging technology introduced in the past decade has helped
doctors understand the physiology of speech and devise new
treatments, Lafreniere said.
"We can look at all the parts separately," he said. "We know what
speech is, and what it isn't, and it's all being tied together."
For more information, contact the National Spasmodic Dysphonia
Association at www.dysphonia.org
or 800-795-6732; and the Spasmodic Dysphonia Association of
Connecticut at 203-756-6271.
