RFK Jr.’s Voice: Why It Sounds Like That

6 07 2008

rfk jr 

Kennedy’s Voice Draws Attention to Rare Disorder

RFK Jr.’s Public Speeches Piqued Curiousity about His Vocal Cords

By LAUREN COX
ABC News Medical Unit

 

When Robert Kennedy Jr. appeared on “Larry King Live” Monday, he hoped to gain attention for energy conservation. But as the public listened to his stilted, strained voice, he also drew attention to another cause.

Following the broadcast, Internet forum questions about his health multiplied. Was it a cold, or was it something serious like lung cancer? What made him sound as if he was choking up?

In truth, Kennedy has a condition called spasmodic dysphonia, a specific form of an involuntary movement disorder called dystonia that affects only the voice box.

Requests for comment and calls to Kennedy’s press representative at his Pace Environmental Clinic office were not returned.

Although the condition is by no means life-threatening, it is life-changing for the few who have it. Spasmodic dysphonia experts estimate the condition affects only .02 percent of the population. It often strikes in midlife between ages 20 and 50, and it appears in women twice as often as in men.

Patients say losing your voice hits people in their primary, intimate connection to the outside world and affects nearly every aspect of their lives.

For the few doctors who study the rare disorder, it is an uphill battle to get it diagnosed, understand its causes and train doctors across America to treat it.

You can hear audio of people with adductor spasmodic dysphonia and the less-common abductor spasmodic dysphonia at the National Spasmodic Dysphonia Association Web site

 

Hear It Coming

Lorraine Rappaport started noticing her voice changing back in the early 1980s when she was working as a school counselor in California.

“It came on gradually; it isn’t like anything that happens overnight,” said Rappaport. “My voice got very hoarse, and there were certain letters of the alphabet at the beginning of words that I could not say easily.”

Slowly, her condition started to interfere with her job and her communication with others.

“There were times where I had to stop and think, because I wanted to avoid a word because I couldn’t say it clearly.”

Rappaport started avoiding words that began with “h,” “ch,” “k” or “c” — a difficult task in English. She had never heard of spasmodic dysphonia at the time, and physicians kept telling her the problem was psychological, especially since she was getting a divorce.

“Good heavens, I went to a total of 22 different people,” Rappaport said. “I was told to go to a psychiatrist, and my husband at the time was a psychiatrist — he recognized immediately this was not a psychological condition”

Although emotional stress didn’t cause the problem, Rappaport quickly discovered that the problem caused emotional stress. Everywhere she goes her breathy, stilted voice draws attention. She now holds support groups for people with general dystonia — some of whom can’t control their vocal cords and have uncontrolled spasms in their head, neck, eyes, or leg spasms.

“It’s really, really bad when you first deal with it,” Rappaport said. “If you stop and think about it you realize your personality, your life is a result of what you can say, of what you can speak.”

Rappaport eventually left her job because of the spasmodic dysphonia. Once she started the support group she realized social isolation was a common problem.

“Speaking with them, we all did the same thing; we just let go of any social life at all because you couldn’t talk,” she said.

Rappaport gets worried when she thinks others are going undiagnosed as well.

“I have heard certain people both on television and in my social life that I guessed had a problem and probably didn’t know,” she said.

“I’ve thought of dropping [Kennedy] a note,” said Rappaport, who happens to live 20 minutes away from the Kennedy home on Cape Cod.

But Kennedy does know about spasmodic dysphonia. According to a spokesman for the NSDA, he’s an honorary board member.

 

Telling Others

“It’s a very rare disorder, and there is really very little known about it — especially back in the ’80s and ’90s,” said Dr. Phillip Song, a laryngologist at the Massachusetts Eye and Ear Infirmary in Boston. “The NSDA has gotten well organized, so you don’t see people go undiagnosed for years as much.”

People with spasmodic dysphonia in the media, such as Kennedy or National Public Radio talk show host Diane Rhem, have helped bring spasmodic dysphonia to national attention. Kennedy and Rhem both serve as honorary board members of NSDA, and Rhem wrote about her experience in her 2002 book, “Finding My Voice.”

Still, Song and other experts warn there are only a few hotbeds of treatment in Boston, New York, Chicago and California. Everywhere in between, especially outside of metropolitan areas, people with spasmodic dysphonia may be suffering and unaware, just like Rappaport first was.

 

Treatment Past and Present

By the early 1990s, Rappaport found treatment for her condition in a National Institutes of Health clinical trial using Botox injections. The NIH flew her to Maryland from California to receive the low-dose injections, and she started to see an improvement.

Only years before, in 1986, Dr. Andrew Blitzer in New York City and others discovered Botox as a nonsurgical treatment for spasmodic dysphonia. Previously, doctors tried to crush or cut the nerve leading to the vocal folds and could only provide a few years of relief before the symptoms returned.

“If you do anything surgical, the dystonia tries to win. It tries to figure out a way around its obstruction,” said Dr. Robert Bastian, spokesman for the NSDA and a Chicago-based specialist in treating spasmodic dysphonia.

Song and Bastian say doctors don’t know what exactly causes spasmodic dysphonia, but they do know that treating the nerves at the vocal cords can only help, not cure the problem.

The best guess spasmodic dysphonia experts have for now is that root of the neurological disorder lies in the basal ganglia. The basal ganglia is often called the “processing area” of the brain and it sits between the cortex — the “upper management” part of the brain as Song calls it — and the brain stem, or the “foot soldier” of the brain.

However, the most advanced research is still focused on finding physical evidence of changes in the brain, and possibly a genetic cause behind the disorder. For now, most spasmodic dysphonia patients work with the cycle of low-dose Botox treatments three times a year that leave their voices first as breathy, then normal then stilted again.

Rappaport falls among the one in 10 people with spasmodic dysphonia who suffer from the from abductor form, which is more difficult to treat with Botox than adductor dysphonia. Instead of sounding strained and stilted, she sounds breathy and weak.

Rappaport decided to stop Botox treatments for fear of building immunity — although most doctors say the low dose in spasmodic dysphonia treatments is unlikely to cause this.

“It’s not good, it’s not perfect, but I can make myself understood and that’s what matters,” Rappaport said. “But I do want to help people understand this — you become less credible because people don’t know what’s wrong with you.”

 

 


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10 responses

6 07 2008
Jennifer

Thanks for this story – I was wondering what the cause of Bobby’s vocal issue was. This helps me understand it a lot better!

Sounds like a terrible thing to live with every day. I can’t imagine opening my mouth and not being able to control the sound that comes out.

6 07 2008
Allison

The first time I listened to Ring of Fire, I thought Kennedy had a cold. Then I read about his disorder in his Wikipedia entry.

I get angry when people like Mike Gallagher and Glenn Beck make fun of Kennedy’s disability–falsely claiming it’s caused by his past drug use–in order to smear him. It’s just in bad taste.

7 07 2008
Alice McKeon

I sometimes encounter spasmodic dysphonia when I try to say “Have a good day!” the v g d combination does not sound out right, so I changed to “Have a wonderful, or, a lovely, day!” to compensate. Changing the sequence of movements is what helps. My dystonia comes and goes; it happened after throat surgeries and unfortunately involved more than the voice alone. Tongue to opening of stomach were affected; I am allergic to mold. Fortunately very minuscule medication works pretty well. Pain is rare.

7 07 2008
New Frontier

Thanks Alice for sharing some of your own personal experience in living with dystonia.

I was not aware until recently that it is progressive, and is not always confined to just one part of the body or another. For example, one lady recently told me that the disorder initially only affected her eyes, but eventually began to affect her speaking voice as well.

Allison, I’ve also heard Kennedy’s opponents imply that his vocal issue is the result of too much partying in his earlier years. Doing this not only makes them look cheap, but painfully uninformed. Anyone who has done a bit of study into dysphonia/dystonia knows that the condition is not caused by alcohol or drug use.

Sheesh – you know, doing a bit of homework before they go on air wouldn’t hurt. Accuracy comes with the dinner of being a journalist.

Then again, Glenn Beck will be the first to tell you he’s not a journalist. Not sure what Mike Gallagher’s excuse is. And Hannity? Don’t get me started. Not today…

17 07 2008
Shirley

I am glad that I will watching Larrry King tonight and Robert Kennedy Jr. was speaking..and I said…he sounds just like me. People don’t understand what’s wrong with you and it’s hard sometimes to express yourself..I had to retire early because I could no longer use the phone on my job. I loved my work…since then I live a pretty lonely life…even family sometimes are not patient with me in between my botox treatments…but I have learn to live a happy life on the inside. I will continue to pray for Robert and others with this condition..so glad I watched Larry King tonight e. I also have a great Doctor here in Florida who encourages me.

10 08 2008
margie

I’m so very glad that I now know why Robert Kennedy’s voice is the way it is.
I did not know.
Thank you for sharing this info.
He is a wonderful person & I admire him so very much!

17 08 2008
Nancy

I heard Robert Kennedy, Jr. speaking on television – and told my husband I think he has Spasmodic Dysphonia like myself.
There are times I open my mouth to speak and nothing comes out, it is very embarrasing. I am learning to live with it better as the years go by. It was very hard for me to speak on the telephone, my voice would clam up. I have learned when I first start to talk to someone on the telephone, to tell them I have a voice disorder and if they need me to repeat something to please ask me. By doing that at the beginning of the conversation it puts me more at ease and my vocal cords don’t close up as much, making it easier for me to speak. Also, everyone is so kind and tells me, “I can hear you fine “.
At the beginning of my voice disorder – people asked me if I was alright or if I had a cold – I would tell them I have a rare vocie disorder – spasmodic dysphonia. Most people have never heard of the disorder and wanted to know all about it. Now I tell people I have a voice disorder and I’m not asked to explain it.
At times my voice is better than other times, I think it is partly because I’m not as uptight and embarrased as I was when first diagnosed.
At work – when in meetings – if I had a comment on something and tried to speak nothing would come out of my mouth. I mostly stopped making comments – even though what I had to say, I felt was important to the group. When attention is called to my voice disorder- it’s like being put on “stage” my voice is much, much worse.
I am so proud to see Robert is going ahead with his speeches and not letting his voice disorder deter him from doing so. The strain on the vocal cords is very tiring, if one has very much to say. I admire him for pushing on.

18 08 2008
New Frontier

Nancy, thanks for sharing your own experience with this vocal disorder. Spasmodic Dysphonia is much misunderstood, so it’s very helpful to have this discussion here.

One thing that absolutely floored me was the astonishing response to RFK Jr.’s June 30th appearance on Larry Ling Live. Within an hour of the broadcast, our website hits exploded! Normally, this would be good news, but…

…instead of people coming here in droves to read up on Kennedy’s solutions to the nation’s problems, we were somewhat dismayed to find they only wanted to know:

“What’s wrong with RFK Jr.’s voice?”

In the days and weeks that followed, thousands of people found us by Googling search terms like “does RFK jr. have lung cancer?” “Is Bobby Kennedy Jr. ill?” (Our blog stats keep track of such things) Some even asked if he was dying! Although he has had this vocal disorder since age 42, it seems that all of a sudden, the world took notice.

And how did they notice! To this day, more than 90 days since the CNN broadcast, the post “RFK Jr.’s voice: Why it Sounds Like That” is in our top 5 posts EVERY DAY.

As an editor of this site, I find that amazing.

Not that I mind so much…like I say, it’s a healthy discussion to have. Once people understand his vocal issue and accept the sound of his voice, the sooner we can get back to talking about the real issues. The big issues. The important stuff RFK Jr. is striving to bring to our attention.

After all, it’s not the sound of his voice that matters. It’s what he’s SAYING that counts.

18 08 2008
Cathy

I am wondering if this is what I have. I work at a nursing home and once I relax with my residents my voice is ok, but if I have to talk to my boss or co-workers I am instantly self concious and it is like my voice freezes up and I do avoid adding to the discussion. If I can get past the first few words I am okay alot of the time. Oh darn it. My sister has early onset Parkinsons with dystonia…

8 09 2008
Cheryl

When I heard Robert F.Kennedy Jr. speak I knew immediately what his challenge was. I Told my husband ” Steve, he has the same disorder that I have, spasmodic dysponia”. I was pround that Robert Kennedy had the courage to make his speech. A major part of our struggle is a fear of what our society will preceive us to be. My first encounter with this disorder appeared while I was a communication Technican for the NYC Police Department in 1983. Because doctors and therapist could not identify my problem and Botox was unheard of, I I was ask to resign from my position. I became isolated and depressed a good portion of my primary years. Life was almost impossible. I could not even speak to friends or family on the phone, much more visit them. When I did manage to obtain another job of lesser pay, I was however, always passed over for management positions. I ultimately left that job and opened a home based day care. Kids are innocent and love you simply because you love them. Botox was recommended in the mid 1990′s but I was terrified about the thought of being injected(I hated needles), much more in my throat by posion. However, the need to communicate and regain my diginity out weighted my fear. I am currently the Executive Director of a not for profit agency, while enrolled at Hofstra University in their Inclusive Special Education Birth to 2nd Grade Masters program. Upon completion I look foward to providing early intervention to children so that they may have the opprotunity to a productive life with high self estem. I am 52 years young and Botox is giving me another opprotunity at life.

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