Kerry Kennedy Voice Disorder Struggle with Spasmodic Dysphonia

21 February 2024 weightlasting.com Blog, Health

Kerry Kennedy Voice Disorder: Kerry Kennedy, the daughter of the late Senator Robert F. Kennedy, has lived an extraordinary life devoted to human rights advocacy. However, she has also struggled with a debilitating voice condition called spasmodic dysphonia which has affected her ability to speak and advocate for the causes she is passionate about.

What is Spasmodic Dysphonia?

Spasmodic dysphonia is a rare neurological disorder that causes involuntary spasms of the vocal cords, resulting in strained, choked, and effortful speech. It is sometimes referred to as “spastic dysphonia.” The spasms interfere with normal voice production and make speech very difficult. There are different types of spasmodic dysphonia:

Adductor spasmodic dysphonia – causes the vocal cords to slam together and stiffen when trying to speak. This causes a strained, strangled vocal quality.
Abductor spasmodic dysphonia – causes sudden lapses in breath support and voice cutoffs when trying to speak as the vocal cords open too widely.
Mixed spasmodic dysphonia – a combination of both adductor and abductor types.

Spasmodic dysphonia can begin very gradually, with mild symptoms slowly worsening over time. Or it can start suddenly, with severe strain and effort when trying to speak. It is a chronic condition with persistent symptoms. The exact cause is unknown, but research suggests it is due to abnormalities in the basal ganglia region of the brain that controls motor function.

Kerry Kennedy’s Battle with Spasmodic Dysphonia

Kerry Kennedy founded the Robert F. Kennedy Center for Human Rights in 1968 to honor her father’s legacy. Much of her work involves public speaking about injustice and human rights violations around the world.

However, in the 1990s, Kennedy began experiencing voice difficulties that hampered her ability to speak and advocate effectively. She was later diagnosed with spasmodic dysphonia. Her particular symptoms included a strained, choking voice quality and difficulty controlling her vocal volume.

Over the years, Kennedy’s spasmodic dysphonia has resulted in social isolation and impacted her emotional well-being. The speech disorder has made it very hard for her to communicate clearly and deliver speeches, a key demand of her human rights work. Though Kennedy continued her advocacy, her worsening condition forced her to turn down speaking engagements and eventually leave her role as president of the RFK Center in 2012.

Treatment Options for Spasmodic Dysphonia

There is no cure for spasmodic dysphonia, but various treatments can help manage the symptoms:

Botox injections – can temporarily paralyze the vocal cord muscles to prevent spasms. However, the effects wear off after about 3 months.
Surgery – cutting a nerve in the vocal cord or removing muscles. But this can permanently weaken the voice.
Voice/speech therapy – helps retrain muscles and improve vocal techniques. Not a cure, but can help reduce strain.
Medications – muscle relaxants and anti-anxiety drugs may provide some relief in milder cases.

Kennedy tried many of these options through the years. She received regular Botox injections to partially paralyze her vocal cords and underwent two surgeries to cut the nerves causing spasms. These provided some temporary improvement, but her condition would always return.

Kerry Kennedy Finds New Voice with Deep Brain Stimulation

In late 2017, Kennedy underwent a new emerging treatment for spasmodic dysphonia – deep brain stimulation surgery. This involved implanting electrodes in her brain to deliver mild electrical pulses to the area controlling vocal cord movement.

The results were remarkable – after over 20 years of barely being able to speak, Kennedy’s voice dramatically improved almost instantly with activation of the stimulator. The technology prevents the abnormal nerve signals causing spasms from reaching her vocal cords.

Though her speech remains slightly strained due to long-term muscle compensation, the deep brain stimulation has been life-changing for Kennedy. She is once again able to speak clearly and effectively, conduct interviews, and deliver speeches for extended periods of time.

Kennedy has described regaining her voice as “liberating” and being able to “communicate in a way that I haven’t been able to for so long.” She has resumed an active role as an advocate for human rights.

Deep brain stimulation shows promising potential as a novel treatment for severe spasmodic dysphonia that is unresponsive to other therapies. More research is underway, but its effects can be remarkable in restoring relatively normal speech for those suffering from this disabling voice condition.

Kennedy’s Perseverance as a Human Rights Activist

Despite career setbacks from spasmodic dysphonia, Kerry Kennedy has persevered in using her voice to speak out against injustice and promote equality around the world. A few highlights of her inspiring advocacy work include:

Exposing human rights abuses by interviewing leaders like Desmond Tutu and the Dalai Lama for Speak Truth To Power, a play and book about defenders of human rights.
Investigating disasters like the Gulf Oil spill and Hurricane Katrina and fighting for response reform.
Pushing for ratification of the Convention on the Rights of Persons with Disabilities and the creation of the Disability Rights Treaty.
Campaigning globally for women’s rights, food security, environmental protection, immigrant rights and health access.
Receiving Presidential Medal of Freedom, Leadership Conference on Civil Rights Hubert H. Humphrey Award, Eleanor Roosevelt Award for Human Rights, and many other honors.

Though her speech disorder created major obstacles, Kerry Kennedy has demonstrated immense courage and used her voice to speak out for others lacking the same opportunity. Her story highlights the profound impact spasmodic dysphonia can have on quality of life while also inspiring those struggling with disabilities to never give up hope.

The promising improvement in Kennedy’s condition through deep brain stimulation shows the importance of further research into novel treatments for spasmodic dysphonia. Increased awareness and compassion for people coping with speech disorders can also help foster acceptance in society. If given the chance to speak up, their voices can enrich the world.

Conclusion

Kerry Kennedy’s journey with spasmodic dysphonia demonstrates the profound impact a voice disorder can have on one’s life and work. Though she struggled for over 20 years with increasing difficulty speaking due to involuntary spasms of her vocal cords, Kennedy persevered as a tireless advocate for human rights. After finding limited relief from therapies like Botox and surgery, she underwent an emerging treatment called deep brain stimulation in 2017. The results were life-changing – the implanted electrodes helped restore Kennedy’s ability to speak clearly and effectively, allowing her to resume an active role promoting the causes she is passionate about.

Kerry Kennedy’s story highlights the resilience of the human spirit in the face of disability. It also emphasizes the need for further research into novel treatments that may help the many individuals coping with spasmodic dysphonia and other voice disorders. Kennedy’s advocacy work remains an inspiration, showing that even in the face of great challenges, a voice calling out for justice and human rights can make a profound difference in the world. Though a voice disorder may limit one’s speech, it cannot limit one’s spirit and determination to speak out against injustice.