Suffering from a vocal disorder, Toni Gold is doing everything to help others
Story By Christina Fuoco-Karasinski | PHOTOS BY LUIS CHAVEZ
Toni Gold considers herself one of the lucky ones.
The Playa Vista resident was quickly diagnosed with a neurological disorder called spasmodic dysphonia more than 50 years ago.
It impacts the vocal cords and makes speech difficult to produce. The “orphan” disease impacts more than 50,000 people.
“Back 50 years ago, there wasn’t much known about SD,” she says. “I saw a neurologist who was injecting Botox into the vocal cords to relieve the symptoms. Botox is the only way that one’s voice can be somewhat normal. Unfortunately, Botox doesn’t work for me.”
To bring awareness and to raise funds for research, the National Spasmodic Dysphonia Association is hosting the virtual Walk for Talk October 7 to October 11. Gold has organized her own walk on Saturday, October 16, in Playa Vista. To participate, email email@example.com or to donate, visit givesignup.org/tonigold.
“I have lived with SD for more than 50 years, although the last 10 years have seen a more rapid decline in my voice quality,” she says. “For this reason, I decided to have my voice be heard loud and clear by participating in the NSDA’s Walk for Talk fundraising event.”
Last year, the association’s walk raised more than $228,000 nationally. Gold’s fundraiser collected $5,000 with 25 attendees. In addition, Gold committed to contribute $20,000 annually for five years.
“I’d rather do it when I’m alive, when the money can be used to research a cure because right now there is no cure,” Gold says.
“We are aiming to raise money to research a cure, but we also want to raise awareness of the condition. For example, people think that I’ve had a stroke, or they don’t ask. I use that experience to make it educational and tell people that I have a vocal condition that’s called spasmodic dysphonia. It affects no other part of my body.”
There are two forms of National Spasmodic Dysphonia: adductor spasmodic dysphonia (AdSD) and abductor spasmodic dysphonia (AbSD), according to the National Spasmodic Dysphonia Association. Spasmodic dysphonia can also be combined with other disorders, making it more difficult to diagnose and treat.
Adductor SD, the most common form, affects approximately 80% to 90% of people with SD. In this type, spasms, usually in the thyroarytenoid muscle (TA), force the vocal folds together in adduction, or closing. AdSD can also affect the lateral cricoarytenoid muscle (LCA) or interarytenoid (IA). When looking at the larynx, an adductor SD case would show vocal folds that stay closed longer or close with more force. These spasms occur particularly on “voiced” speech sounds.
AbSD, a less common form, occurs in approximately 10% to 20% of cases and results from spasms when the posterior cricoarytenoid muscles (PCA) abducts, or opens, the vocal folds. In AbSD, the spasms in the abductor muscles cause the vocal folds to remain open for a longer duration than should normally occur on these sound combinations. This results in the voice taking longer to complete the voiceless sounds, which makes the speaker sound “breathy.” AbSD causes problems with the production of “voiceless” speech sounds, which normally sound “airy” or “breathy” when produced.
Gold has a combination of both, which is the most difficult to treat, she says.
“Botox injections may, in the majority of the people, alleviate the symptoms, but the Botox only lasts about three months,” she says. “For people who do find Botox alleviates their symptoms, they have to go back every couple of months and get additional injections.”
Gold sought help at age 23 when she could not say words like hospital. Gold, 75, has been her own medical advocate, visiting doctors in Los Angeles, Chicago, New York and Portland. Up until 10 years ago, her voice was somewhat OK. With age, her voice has deteriorated.
“I have two terrific careers, one as the CEO of an IPA (independent practice association), an organization that negotiated agreement with the HMOs,” she says. “The last 12 years of my career was as a financial adviser at Smith Barney. I retired in 2012.”
“My voice wasn’t that bad and every position that I had I had to do a lot of public speaking, which I was able to do for a while.”
Upon retirement, Gold became a support group leader in California for the National Spasmodic Dysphonia Association. Prior to COVID-19, the members were meeting quarterly at a physician’s office in Beverly Hills. Now it meets quarterly, but through Zoom featuring well-known speakers. The next meeting is October 30.
“What we miss via Zoom is the confidentiality of people sharing their stories,” she says.
Gold is more than happy to share her story in the hopes it will raise awareness.
“Although speech is controlled by the brain, researchers are trying to identify the exact part of the brain that causes SD,” she says. “I’m also Jewish and there has been some research that leads one to believe that the genetic default might be carrying through a Jew’s lineage. It’s very, very common. I just hope others benefit from my story.
“Living with a voice disorder is a daily challenge because verbal communication is the primary way I interact with people. I must constantly remind myself and others that SD is not who I am, but rather a personal characteristic that makes me unique. Just as my social world has been contracting (due to my inability to communicate), my virtual world is expanding. As the leader of the Los Angeles SD Support Group, I am able to interact with countless others who, like me, cannot be heard.”