By Laura Latzko
Toni Gold has long suffered from spasmodic dysphonia, but, frustratingly, the rare disorder is often mistaken for laryngitis or drunkenness.
To raise awareness and donations for research for the voice disorder, Gold will participate in Walk for Talk, which is set for October 12 to October 15.
During the event, participants around the country do a range of activities, such as walking, biking, swimming or surfing.
Gold will hold her own walk with the Greater Los Angeles Dysphonia Support Group on Saturday, October 14, in Playa Vista. After the leisurely 2-mile flat walk through Playa Vista, Gold will provide dessert and water. Attendees are encouraged to bring a bag lunch.
Funds raised during the local walk will go to Dysphonia International. Gold and her attendees have raised more than $15,000.
Dysphonia International is dedicated to research, education, awareness and support for individuals affected by spasmodic dysphonia and related voice conditions. It funds grants that allow researchers to test hypotheses and gather data so that they can apply for larger grants from organizations such as the National Institutes of Health.
“Walk for Talk is an event that started in 2020 during the pandemic as a way to bring our community together,” says Kimberly Kuman, executive director for Dysphonia International.
“It’s a fundraiser, but it’s also an awareness raiser and empowerment event. We have seen so many people willing to share their journey with their family and friends. It’s an event that not only brings together individuals living with vocal conditions but family, friends, health care providers like Dr. (Michael) Johns, researchers. … We encourage people, if there isn’t a walk like Toni’s, to still participate in their own way.”
Kuman says during the first three years, participants worldwide have raised more than $700,000 for the organization.
Spasmodic dysphonia causes involuntary spams in the muscles in the larynx, which can lead to a person’s voice becoming strained, breathy or whispery. It can also cause their sentences to be broken up.
The condition impacts around 50,000 people around the country.
Johns, a laryngologist and medical adviser for the support group, says a voice disorder affects more than just a person’s ability to talk.
“It is something we take for granted,” the doctor says.
“It’s the primary way that we communicate. It’s more than that. It’s certainly an expression of ourselves. It conveys a lot of our identity. We do so much with our voice dynamically for entertainment, joy, safety, to be able to yell out to someone. You don’t really appreciate how important it is to you. Most don’t until you lose it.”
Johns is the director of the USC Voice Center, where his team helps patients with voice disorders such as spasmodic dysphonia.
“With spasmodic dysphonia, you diagnose it by listening,” Johns said. “The larynx, the voice box, looks normal because the condition is a neurological condition in the brain. … On average people with spasmodic dysphonia, it takes them three to four years to get a diagnosis, and they see four or more different specialists.”
One of the most common treatments for the disorder is Botox injections into the muscles in the larynx. Gold says these treatments often are not long-lasting, and patients have to go every three to six weeks for injections. Many patients also undergo speech therapy.
Johns says having voice conditions can impact patients’ ability to work and often results in time off.
Gold developed spasmodic dysphonia when she was still working as a CEO of an independent practice association and as a financial adviser. Following her diagnosis, she was out of work for about a year.
“Thankfully, thereafter, I went on to have a successful career. But that year was obviously very traumatic,” Gold says.
“I would let people know I had a voice condition so they didn’t think something was cognitively wrong with me. And I found people to be very forgiving. They were willing to accept that my condition impacted only my voice. It doesn’t impact any other part of my body.”
She used email and letters to avoid speaking, but when she had to speak, “I did and I could.”
Gold says many people with her condition work in professions where they have to speak a great deal, such as teachers or attorneys. The diagnosis is often devasting because of how it will affect them professionally and personally.
Gold says the diagnosis and treatment are difficult because many physicians are not well versed in it.
“They have never seen a patient with spasmodic dysphonia, and there is no diagnostic exam that one can do to definitively state that one has SD,” Gold says.
“It’s only skilled specialists like Dr. Johns and his team who listen to a patient speak who can determine that a patient has SD.”
As she aged, her condition had a greater impact on her daily life.
“As I aged, which often occurs, the voice deteriorates, and it’s extremely difficult to speak in a restaurant or at a party where there’s lots of people. In fact, in speaking on a one-to-one basis with people, it’s very difficult to be understood,” Gold says.
“Kim’s organization has developed placards, which I keep in my car, that say, ‘I’m not drunk. I haven’t been drinking. I have spasmodic dysphonia. That’s why I sound that way.’
“If I’m ever stopped by a policeman, I can show them this. I also carry a small version of that placard in my wallet, so if I can’t speak or be understood, people can read that I have a voice condition.”
Dysphonia International hosts support groups throughout the United States and Canada. It also gives out awareness cards and buttons, and during the pandemic, it offered special masks for people with voice conditions.
“So much of what we do is driven by our volunteers like Toni and our community,” Kuman says.
“They say that this would be really helpful, and we put it into practice. We have books, a very extensive website, videos, just a lot of education and awareness.
“We do an annual symposium, where we can bring the leading experts together along with our community. It’s a really powerful community. It’s interesting. For a group of people that have a vocal condition, our events are some of the most talkative meetings I’ve ever been to. Like the support groups, it’s one place where nobody is going to question your voice. There’s a validation in being in a room with other people who intimately understand what it’s like to live with a vocal condition.”
Gold says the symposium is helpful because everyone “sounds the same and supports one another.”
Having a conversation with others can be challenging, she says, and demeaning.
“What happens is you do become invisible,” she says.
“People don’t want to hear what you have to say, or you get interrupted because people are impatient. So, it truly is an invisible disease. People perceive you as not being there. I tell people I’m not SD. I am more than that. You just have to listen to what I have to say.”
This year, Dysphonia International honored Gold with the Midge Kovacs Annual Awareness Award for her work in supporting others and bringing attention to the disorder. Each year, the award is given to one of the support group leaders.
“What I do for the support group and Walk for Talk is a labor of love,” Gold says.
“It’s a way for my own voice to be heard loud and clear and to help people who have nowhere else to turn as far as getting a diagnosis or, once they have that, dealing with it.”
Walk for Talk
WHEN: 10:30 a.m. Saturday,
WHERE: 6241 Crescent Park West, Playa Vista
PRICE: Free to attend, donations are accepted
INFO: email@example.com, givesignup.org/teamtoni2023, dysphonia.org/walk-for-talk.