A rare brain disorder robbed Robert F. Kennedy Jr. of his strong speaking voice
Kennedy's vocal rasp is not caused by an infection or respiratory condition. Instead, he has spasmodic dysphonia, a rare neurological condition in which the muscles that open and close his vocal cords spasm involuntarily, creating a strained or strangled quality to his speech.
Kennedy, 71, has publicly discussed how the condition robbed him of his typically strong speaking voice in his early 40s.
'At that time, I was making a lot of my income doing public speaking, and I could speak to large halls without any amplification,' Kennedy said in a February 2024 interview while running for president.
'When I was 42 years old, I got struck with a disease, a neurological disease, an injury called spasmodic dysphonia, and it makes my voice tremble,' he said, adding that 'I think it makes it problematical for people to listen to me. I cannot listen to myself on TV.'
Muscle contraction disorder begins in the brain
Spasmodic dysphonia affects up to 50,000 people in North America, and is a subset of dystonia, a muscle contraction disorder that can affect many parts of the body. In one type of vocal dystonia called lingual protrusion dystonia, a person's tongue can protrude when they try to speak, strangling their words.
The most common form, cervical dystonia, affects the neck, causing wobbling or worse, the inability to hold the head upright. Blepharospasm, another kind of dystonia, is a forced squeezing shut of the eyelids that reduces or blocks vision. Still other types of dystonia can focus on the legs, hands and feet, even the entire body.
While the disorder is relatively unknown, as many as 250,000 Americans have some type of dystonia, according to the American Association of Neurological Surgeons. It's the third most common movement disorder behind essential tremor and Parkinson's disease.
Dystonia is thought to begin in the part of the brain called the basal ganglia that controls how muscles contract. When the condition strikes, that signal is distorted, causing muscles to move involuntarily or get stuck in an abnormal position.
Treatments for dystonia are limited. Some medications can help distract the brain, and those are usually tried first. Deep-brain stimulation is a last resort for all but those with widespread dystonia in many body parts, which, sadly, are often children, experts say. Physical and speech therapy are usually a part of the treatment plan; acupuncture and medication may also help.
'A small number of people, maybe 5%, will find that it goes away just like it came, and we don't really know why,' neurologist Dr. Hyder Jinnah told CNN in an earlier interview.
'Most people have it for most of their life once it starts, and so we have to figure out ways to treat it,' said Jinnah, a professor of neurology and human genetics at Emory University in Atlanta.
Injections of botulism toxin relax muscles; it is often the treatment of choice for some types of dystonia, such as blepharospasm.
'It doesn't treat the disorder; it treats their phenomena,' Dr. Andrew Blitzer, an otolaryngologist at Mount Sinai in New York City, told CNN previously. 'We can't change the brain signal coming in to the muscle, but we can weaken the muscle so it can't go into spasm.'
Attacks the part of the body used most
For a reason no doctor understands, dystonia often attacks the part of the body a person uses most for his or her profession. Diane Rehm, who was a nationally known radio talk-show host for decades and now has a podcast, has a form of dystonia that affects her vocal cords.
'How can you have a disorder where everything about the brain and the hand functions normally except the hand can't perform one exquisite task like writing or playing a musical instrument?' New York neurologist Dr. Steven Frucht, director of the division of Parkinson's and Movement Disorders at NYU Langone Health, told CNN in an earlier interview.
A violinist and pianist himself, Frucht treats many musicians with the disorder. Trumpet players will suddenly be unable to use their lips. Guitar players, writers and pianists will lose control of fingers or an entire hand.
'You would think that this cannot happen,' Frucht said. 'And yet after seeing hundreds of patients, I can say it most certainly can. And it does.'
Spasmodic dysphonia, or SD, can dramatically affect the lives of those who develop it, according to Dysphonia International, a nonprofit educational and support organization.
'Many individuals with SD feel that their voices don't accurately portray emotions, personality, and competence,' according to its website.
'Individuals experience physical, emotional, and functional losses including emotional distress, loss of job or salary, forced career change, reduced social participation, and negative changes in personal relationships due to spasmodic dysphonia.'
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