Your Incredible Neighbors: GV woman loses her voice, not her spunk

Wilma Myers’ life changed drastically in 1985 when, for reasons unknown at the time, she started having difficulty with speech and breathing.

Words wouldn’t come out right, there was extreme tension in her vocal cords, and she could no longer speak normally. It was much like stuttering, only different, she explained in a detailed e-mail interview.

Initially told by doctors that “it was all in her head,” it took five years until she was diagnosed with “Spasmodic Dysphonia” a rare condition where the vocal cords contract involuntarily, causing the person to be unable to speak normally.

During the five-year period from onset of symptoms to diagnosis, Myers said, she went from doctor to doctor to speech therapist.

“They all told me it was in my head… I walked out of many offices crying, or mad. I had every test you could think of.”

She explained that spasmodic dysphonia, which affects more than 50,000 Americans, has been around for a long time but had been catalogued as mental illness. The National Spasmodic Dysphonia Association says the disorder is part of the same family of movement disorders as Parkinson’s disease.

Myers found a doctor who performed surgery to sever her left vocal cord and said, “It was a huge mistake, but many of us in those days made the same mistake. It isn’t used now.”

After that surgery, she completely lost the use of her voice for two years.

Referred to doctors at the National Institutes of Health, Myers was finally diagnosed by medical professionals who could put a name to the disorder.

Asked if there had been any physical or emotional trauma that may have caused this condition Myers said that in 1981, while living in Oregon, El Nino removed 350 feet of her and her husband’s oceanfront property.

The speech problems were gradual and began to appear over a period of a year when they returned to California.

Myers said, “My wonderful husband, who is very quiet, had to speak for both of us. It was a very difficult time. I have many longtime friends who were my support therapy.”

Myers was referred to Dr. Afshin J. Emami in Tucson, who injected botox into her right unparalyzed vocal cords. “Sometimes they work and sometimes not. I can talk slightly, and it is strained.”

Her good friends understand and help. She writes most things down and uses e-mail for 99 percent of her communications and business. She can’t use the phone.

“I made a small business card about my SD. It has all my information on it. I carry it with me every place and it solves many problems.”

While most everyone has met people who are blind or deaf, they have never met someone who virtually can’t speak. Young people get embarrassed, Myers said.

With normal hearing, she and her husband have taken sign language classes but it isn’t feasible because most others can’t communicate via signing, she said.

Since being diagnosed, Myers has participated in clinical studies about SD. She says the condition is caused by a loop in the brain and that one recent study revealed new information about where and why it is in the brain tissues. But there is no cure.

Active her entire adult life teaching fiber art in schools, a community college on the Oregon coast and recreation centers, she has volunteered, traveled and taught as a fiber designer worldwide for needlework companies.

Determined not to let this difficult and speech-limiting condition rule her life, Myers says, “I am 81 years young and enjoying every minute of my life… be it not the life I would have planned because of my medical voice problem.

“I have been a teacher and volunteer forever. I will always continue this. My mother inspired me. She was the same.”

Myers said it isn’t uncommon for SD to have a negative impact on personal relationships and careers. “Many have lost their jobs, friends and family. Social Security will not recognize this condition.”

She’s hoping to start a support group for those with SD, their family and friends in Green Valley/Sahuarita/Tucson and surrounding areas. “We all need to support one another. We all need a shoulder to cry on, share our problems with, pick ourselves up and start over.

“Many of my SD friends are like me; many have other ailments, too. And they’re busy, helping others.”

Anyone interested in an SD support group may contact Myers at wpm_7@cox.net.

Ellen Sussman is a freelance writer in Green Valley. Contact her at ellen2414@cox.net.