Brain disorder leaves Robert F. Kennedy Jr. with weakened speaking ability
Dystonia, a muscle contraction disorder, is the third most common movement disorder, following essential tremor and Parkinson's disease. According to the American Association of Neurological Surgeons, as many as 250,000 Americans are affected by some type of dystonia.
This condition, which affects up to 50,000 people in North America, includes a variety of types such as lingual protrusion dystonia, cervical dystonia, and blepharospasm. One notable subset of dystonia is Spasmodic Dysphonia (SD), a condition that affects the vocal cord muscles, leading to strained or strangled speech.
Robert F. Kennedy Jr., a prominent figure, has been affected by SD. His voice, once strong, changed significantly due to this rare neurological disorder. The condition, which developed in his early 40s, has impaired his ability to speak with his former strong voice. The attempts to restore his voice are not detailed, but SD involves uncontrollable muscle spasms that make speaking physically and socially challenging.
For many people with dystonia, the condition is a lifelong battle. Dr. Hyder Jinnah, a neurologist, stated that most people with dystonia have the condition for most of their lives, and treatments are necessary to manage it. Treatments for dystonia are limited and include medications, deep-brain stimulation, physical and speech therapy, acupuncture, and medication. One common treatment is the use of botulism toxin injections, which weaken the affected muscles to prevent spasms.
Dystonia can significantly impact the lives of those who develop it. Individuals with SD often feel that their voices do not accurately portray emotions, personality, and competence. The condition can lead to physical, emotional, and functional losses, including emotional distress, job loss, forced career changes, reduced social participation, and negative changes in personal relationships.
In professions that heavily utilize the affected body part, dystonia can be particularly debilitating. For instance, musicians may lose control of fingers or an entire hand, making their work impossible. Diane Rehm, a nationally known radio talk-show host, is another example of someone who has a form of dystonia that affects her vocal cords.
Dr. Steven Frucht, director of the division of Parkinson's and Movement Disorders at NYU Langone Health, emphasized this point, stating that dystonia can affect the part of the body a person uses most for their profession.
While a small number of people may find that dystonia goes away on its own, most will require ongoing treatment to manage their symptoms. For those affected, understanding and awareness of this condition are crucial in navigating the challenges it presents.
