When the words won't come: spasmodic dysphonia

Talking to Tawnya Cook face to face can sometimes be like dealing with a bad cell-phone connection.

Some of her words break up or become caught in her throat, and she has to force them out.

When Cook was 15, doctors told her the speech problem was stress related and put her on anti-anxiety medications Paxil and Xanax.

A referral in 1998 to the Department of Speech Pathology and Audiology at the University Nevada, Reno, was denied by her state of Nevada health insurance plan.

In her medical records, a notation on dated Oct. 9, 1998 reads, "Hometown Health Plan will not cover speech therapy for people who stutter."

Her supervisors talked to her about it at work. People would laugh or get frustrated or angry because she had difficulty finishing sentences.

If someone would ask her what was wrong, she'd tell them it was "breathlessness" related to stress.

"When you're told it's anxiety, and you're not feeling anxious, it makes you feel like you don't know yourself," said the 24-year-old Carson City woman. "I felt like a basket case."

After two years of therapy, Cook said, her personal life was helped greatly, "but not my voice."

Frustrated by the continued problem, she asked her therapist on March 26 for a second referral to UNR. The following day, she was on campus.

"Within 30 minutes, I had a diagnosis," she said -- spasmodic dysphonia.

According to the National Spasmodic Dysphonia Association, the condition is a neurological voice disorder that involves involuntary "spasms" of the vocal chords, causing interruptions of speech and affecting voice quality.

The cause of spasmodic dysphonia is unknown. The general medical consensus is it is a central nervous system disorder. Although stress or anxiety can be aggravating factors, they don't cause the disorder.

At UNR, Cook said, a microscope was inserted into her nose and throat. Photographs of her vocal chords as she spoke revealed she had the disorder.

A videotape provided by the clinic chronicled the struggles of others who have the condition.

"When I watched the tape, I started crying," Cook said. "I wasn't alone anymore."

Nine years after her first symptoms, she said she feels liberated.

"I'm not crazy," she said, laughing. "When people ask me what's wrong with my voice, I can tell them."

Cook said she is motivated by a desire to help others who might have the condition and are being told it's "in their heads."

"I don't want other people to have to go through what I went through. They aren't alone," she said. "Maybe people will read this and be more sympathetic to others because for whatever reason, it seems to be frustrating for the listener."

A 1997 graduate of Carson High School, Cook is an administrative assistant for the state. Although there is no cure for spasmodic dysphonia, she's content at the moment with the diagnosis.

"I want to get the word out. It's a very rare condition. It's frustrating, and it's stressful because of the unknown. Because of the diagnosis, I feel like I won the lottery."

INFORMATION

Information on spasmodic dysphonia:

www.dysphonia.org

Online support groups:

www.wemove.org/chat.html or http://www.dystonia-support.org