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Independent presidential candidate Robert F. Kennedy Jr., dropped a 30-minute campaign video on social media last week explaining why his voice sounds creaky and strained.
He says he has spasmodic dysphonia, a rare neurological disorder that impacts the voice.
Spasmodic dysphonia can also be called laryngeal dystonia. A dystonia is an involuntary contraction of muscle, Seth Kaplan, MD, director of Northwell Health’s Center for Voice and Swallowing Disorders in Manhattan, told MedPage Today.
While the exact cause of the disorder is unknown, it could be due to abnormal functioning in the brain’s basal ganglia, which helps coordinate the movement of muscles, Kaplan said. While generally thought to be idiopathic, in rare instances spasmodic dysphonia has occurred after surgery or trauma, he added.
The disorder often starts with vocal hoarseness, he said. “But it is a kind of interesting presentation of hoarseness — a kind of a staccato way of speaking, like with very pointed syllables — and it’s often because they’re having difficulty controlling the way that they’re speaking and it comes off as a strained and strangled sound.”
Some patients face a lag in diagnosis when misdiagnosed with more common conditions, like essential or vocal tremor, Kaplan said.
Margaret Huston, MD, division chief of laryngology at Washington University in St. Louis, told MedPage Today that patients with spasmodic dysphonia have said speaking feels “tight” and “effortful.” But the ways in which it sounds depends on the type of spasmodic dysphonia.
Adductor spasmodic dysphonia is the most common and the voice breaks when the vocal cords vibrate against each other. On the other hand, with abductor spasmodic dysphonia, the voice breaks on the voiceless sounds. It’s possible to have both types, which is called mixed spasmodic dysphonia, she said.
Spasmodic dysphonia mostly develops when a patient is in their 30s or 40s and is more prevalent in women. Kennedy, now age 70, didn’t develop the disorder until he was in his 40s, according to an interview with News Nation from last year. There is no known cure, but there are treatments.
“Right now, Botox is the gold standard of treatment,” Huston said. Depending on the type of spasmodic dysphonia, onabotulinum toxin A (Botox) injections target different muscles. For adductor, the thyroarytenoid or vocalis muscles are targeted, and for abductor, the posterior cricoarytenoid muscle. Because the muscle-weakening effects of Botox injections wear off, injections are needed every 3 months. The dose varies, depending on the patient, with some only needing 0.5 units, though most get 1.5 to 2.5 units, she said.
And getting the right dose is crucial; too big a dose and a person may end up with what Huston described as a “Minnie Mouse” or “falsetto voice” for a week or more, and alarmingly, may have trouble speaking or swallowing for weeks at a time. With the correct dose, the high-pitched voice may still occur and patients may have to avoid thin liquids for a week, but the patient will have more ease speaking. Kaplan added that voice therapy and working with a speech pathologist can also help.
Newer treatments are also being explored, notably sodium oxybate (Xyrem), which is mostly used to treat narcolepsy. For some people with spasmodic dysphonia, the symptoms relax with alcohol consumption. A 2017 study in Laryngoscope found that among this population, “sodium oxybate reduced voice symptoms in 82.2% of alcohol-responsive [spasmodic dysphonia] patients both with and without co-occurring [voice tremor].” Another small trial from 2020 published in Stereotactic and Functional Neurosurgery explored deep brain stimulation as treatment for spasmodic dysphonia.
In the same News Nation interview, Kennedy said he saw Andrew Blitzer, MD, the pioneering researcher who first discovered Botox as a spasmodic dysphonia treatment. Kennedy also said he went to Kyoto, Japan for a “novel surgery” that improved his condition. The Kyoto ENT Surgicenter describes a procedure on their website that smooths “airflow by making the glottal gap wider during phonation.” In the U.S., various other surgical techniques have been explored, such as recurrent laryngeal nerve deneration/reinnervation, though Botox remains first-line treatment.
Huston said that while not necessarily dangerous, “voice disorders can be incredibly isolating to patients.” Hence, “by sending them on to a voice specialist and having them evaluated, we can really make an improvement in patients’ quality of life if we can improve their voice.”
Even Kennedy himself said in the News Nation interview: “I cannot listen to myself on TV… so I feel bad about you guys having to listen to me.”
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Rachael Robertson is a writer on the MedPage Today enterprise and investigative team, also covering OB/GYN news. Her print, data, and audio stories have appeared in Everyday Health, Gizmodo, the Bronx Times, and multiple podcasts. Follow
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