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

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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33 Comments

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33 responses to “RFK Jr.’s Voice: Why It Sounds Like That

  1. 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.

  2. 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.

  3. 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.

  4. 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…

  5. 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.

    • storytimeknitter

      I also have the disease and have been struggling with the disease since June of 2007, while reading to preschoolers.

      I have never smoked, drank nor did drugs. I believe that for most of us with this disease that there is a secret fear of what others must (understandably) be thinking and particularly when it is difficult to find a doctor who is familiar with the disease and its treatment. Leaving us without support and with the inability to address the questions of others intelligently. I saw 2 Ear Nose and Throat specialists one did a larynxscopy. Bother said that there was NOTHING they could do! I had a Cat Scan, went to a speech therapy, took homeopathic medicines, and I saw an allergist (I was told that I might be allergic to mold). I continued to be proactive with my family physician, who took the initiative to refer me to a major hospital here in the Piedmont of North Carolina who will treat it this week with Botox treatments.

      I saw Robert Kennedy Jr. on CNN also and had the same reaction…….”he sounds like me”. Also I heard Miss Reims on radio and thought the same thing. Those of us with the disease understand the fears that we keep inside particularly when working with our voice and around others.

      Prayers go out to Robert Kennedy, Jr and all who are being challenged with this disease. Know that you are not alone. The best thing is to keep in prayer for yourself and to find treatment. Be strong and keep going.

      Please don’t shy away from others. (The hardest thing was to convey to my two closest friends that I AM being proactive. They would look at me as if to say. I wasn’t being proactive when I was. Their reaction was so hurtful when they would suggest lemon and honey and even cider vinegar :-) which were initially tried when the disease slowly began. One alluded that I wasn’t taking care of myself. How hurtful and frustrating!
      : ‘- (

      Do deal with those who don’t understand and stick with those who are supportive. Most of all do your own research to get help. Blessings! Linda

  6. 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!

  7. 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.

    • storytimeknitter

      Hi Nancy, Yes check on it. Ask you physician to see if there is a SD clinic or an Otolaryngology Clinic at an area or regional hospital at least to be diagnosed correctly.

  8. 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.

  9. 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…

  10. 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.

    • storytimeknitter

      Cheryl thanks so much for sharing. I am so happy to hear that Botox will possibly help with this disease, I feel so for your inability not to keep your job. It has been a big fear of mine. I also work with pre-K children as a public librarian and have been blessed that the kids as well as parents and child care agencies keep coming back to the library. I am more than ever after reading your statement looking forward to have my first shot of Botox in my neck on Friday. I am thankful for you that you were able to overcome this challenge. Congratulation on your new endeavers.

  11. Laura Garrigus

    I’m wondering if I can get a reply from someone. I’m suffering a voice disorder. I’d be interested in starting a support system in my area. I live in the midwest. My disorder started 2-3 years ago. I have tried a number of services to resolve this too; but I haven’t had much success so far. Voice exercises seemed to help some, but it is temporary and not reliable. I am devastated. I’m wondering what I can do to help out.

    • storytimeknitter

      I also have the disease and have been struggling with the disease since June of 2007, while reading to preschoolers. I was diagnosed with SD one year later. Those after researching on the computer. I figured it was what I had. The unfortunate thing is that not even ear nose and throat specialist said it was nothing they could do. Though they could have refered me to an Otolaryngology Clinic who would have at least tested me correctly which is what I recommend to you. I hope that you have gotten some answers but in my own situation it took me nearly 2 and one half years to not only receive a diagnosis but also to obtain the correct treatment. Please read on. I hope all is well.

      I have never smoked, drank nor did drugs. I believe that for most of us with this disease that there is a secret fear of what others must (understandably) be thinking and particularly when it is difficult to find a doctor who is familiar with the disease and its treatment. Leaving us without support and with the inability to address the questions of others intelligently. I saw 2 Ear Nose and Throat specialists one did a larynxscopy. Bother said that there was NOTHING they could do! I had a Cat Scan, went to a speech therapy, took homeopathic medicines, and I saw an allergist (I was told that I might be allergic to mold). I continued to be proactive with my family physician, who took the initiative to refer me to a major hospital here in the Piedmont of North Carolina who will treat it this week with Botox treatments.

      I saw Robert Kennedy Jr. on CNN also and had the same reaction…….”he sounds like me”. Also I heard Miss Reims on radio and thought the same thing. Those of us with the disease understand the fears that we keep inside particularly when working with our voice and around others.

      Prayers go out to Robert Kennedy, Jr and all who are being challenged with this disease. Know that you are not alone. The best thing is to keep in prayer for yourself and to find treatment. Be strong and keep going.

      Please don’t shy away from others. (The hardest thing was to convey to my two closest friends that I AM being proactive. They would look at me as if to say. I wasn’t being proactive when I was. Their reaction was so hurtful when they would suggest lemon and honey and even cider vinegar :-) which were initially tried when the disease slowly began. One alluded that I wasn’t taking care of myself. How hurtful and frustrating!
      : ‘- (

      Do deal with those who don’t understand and stick with those who are supportive. Most of all do your own research to get help. Blessings! Linda

  12. Pingback: Robert Kennedy Jr. on the present and future of America, and why he thinks Canadians should sneak over the border on election day… | SpiralTruth

  13. I have a voice just like Robert Kennedy. I’m 42 it started around 37 I would lose my voice or go horse then it would come back. I later found out I have something like ALS, its called Bulbar Palsy. It’s a fatal disease usually 3 to 5 at most 10 years. I’m doing very well with it still walking using one cane. Eating is getting very hard to do its a task. So in short please if your voice gets horse it could be something bigger please see a nurealagist I know its spelled wrong but, you know what I mean. Do not be afraid it could just be a Dystonia. Take care God Bless especially all the Kennedy’s Americans Best of the Best family.
    Douglas P

    pavingdoug@msn.com

  14. I have a voice just like Robert Kennedy. I’m 42 it started around 37 I would lose my voice or go horse then it would come back. I later found out I have something like ALS, its called Bulbar Palsy. It’s a fatal disease usually 3 to 5 at most 10 years. I’m doing very well with it still walking using one cane. Eating is getting very hard to do its a task. So in short please if your voice gets horse it could be something bigger please see a nurealagist I know its spelled wrong but, you know what I mean. Do not be afraid it could just be a Dystonia. Take care God Bless especially all the Kennedy’s Americans Best of the Best family.
    Douglas P
    pavingdoug@msn.com
    pavingdoug@msn.com

  15. Jeanne H.

    I’ve been treated for spasmodic dysphonia for over 10 yrs. with botox with quite good results.

    In Toronto we have a clinic once a month where people from all over Eastern Canada travel for injections. Here we find so many similarities in our pre treatment problems…..psychiatric, social, emotional and even financial.

    Once the condition is diagnosed we can now give a name to our voice problem and “justify” our difficulty in communication. So many can then feel more like “themselves”. Without your voice so many avoid the little daily “niceties” that allow us to share with people we meet in our day to day living, even if our families and close friends tried to be understanding. The frustration of not knowing why your voice won’t work and trying speach therapy and psychiatric help to no avail can now be put behind us.
    Just last year my identical twin was diagnosed with spasmodic dysphonia and is now being treated (on the other side of the world, Australia) successfully with botox….however, if she hadn’t been aware of the condition because of me she might have struggled for years undiagnosed.
    so….if any of you find all of this familiar….find a specialist who can give a diagnosis.

    • storytimeknitter

      Yes, I agree. It has been 2 and 1/2 years to find treatment for a diagnosis that I was given. I will be going for my first Botox treatment this week. I feel fortunate to reside in the Piedmont area of North Carolina where there is a regional hospital who has a Deprtment of Otolaryngology that offers botox treatment and can not only diagnosis but test to support their diagnosis. I can’t begine to tell you how awful I felt when both Ear Nose and Throat Specialists
      (?) told me that they could do anything. Ear, Nose and “Throat” …humm. I don’t think so. LOL Thanks for your support and Take care, Linda

  16. Kathy

    My voice began to change when I started a new anti-depressant medication — or so I thought. I stopped the medication and tried something different — but there was still something wrong with my voice. I kept asking people if I sounded different and they said my voice sounded weaker, but no one could put a finger on it. I kept thinking I sounded like Katherine Hepburn, but then it hit me one day — that I sounded like Robert F Kennedy Jr. I have not been diagnosed yet, but I fully intend to see my ENT. Last April I had sinus surgery, so I have always had a lot of problems with drainage and clearing my throat. That was bad enough. But now my voice — this is very difficult for me.

    • Meredith Branch

      Kathy, some of the medications to treat depression, e.g. wellbutrin, can be very activating and make one’s dysphonia worse. You might try a different med. Zoloft, prozac and other ssri’s worked for me without exacerabing my voice problems.

  17. Joe

    I started having problems about three years ago. At the time, I didn’t know what was happening or that it was a true “medical condition.” My symptoms became more regular and severe to the point that I couldn’t have a normal conversation with my wife, place a phone order for pizza, chat with the grocery clerk, or perform some of my job functions as a software engineer.

    Reading up on the oddities of the condition, I happened on an article about Scott Adams recovering from SD, and I realized that some of the peculiarities I had noticed about the condition matched his experience… in particular, having the ability to sing, rhyme, use accent, etc without a problem.

    I was devastated to learn that the cause was unknown and that there was no known cure. However, I was encouraged by Adams’ story as well as the stories of a doctor in LA that did give some assistance to Adams and claimed to successfully treat and cure others.

    I was not comfortable with the idea of surgical or botox treatments, and the LA doctor was too expensive for me. Insurance wouldn’t pay for him, because he was not mainstream. In fact, the medical community responded to his claims by saying that anyone so cured must have been misdiagnosed to begin with. I couldn’t accept that, especially given that the root causation is not well understood.

    It did seem to me that the ability to sing, rhyme, and make certain sounds better than others could provide the basis for at least some kind of strategy to effect some improvement by conscious compensation. By practicing heavily, reading nighttime stories to my daughter and listening to what worked and didn’t work, I slowly improved my abilities to speak in a more regular fashion.

    The theory was simple but still difficult in practice. I got the basic idea after sifting through some difficult material written by the LA doctor, Dr. Morton Cooper. His fundamental suggestion is to heavily practice voicing from the “mask”, to consciously push and produce sounds from the facial area rather than from the back of the throat. It took a while to get what that meant, but after months of effort where I concentrated on using my lips and tongue to make sounds, varying the rate of my sentences to speak faster and more fluidly, I noticed that I was on the right track.

    At this stage, I don’t think I’ll ever be completely free of this, and some days are harder than others, but about 80% of the time, the practice is fairly automatic and speech comes with relative ease. Some days are tougher than others, and I need to remind myself about the basics. As a result, I believe that for some (I can’t speak for anyone but myself), these results can be achieved through practice and training, grounded in the basic strategy of speaking from the mask with the aim of developing right habits toward a more consistent outcome.

    I felt I had reached 90% at one point, but I’d say I range from 80%-90%, and chipping away at that last 10% is tough. After getting “good” it’s difficult to continue working at training myself harder for smaller returns. However, I find that without continued application and conscious attention to “good practices”, I tend to slip and need refreshers.

    I hope that this information, though sparse, might help others. Please feel free to contact me if you have further questions or have any useful experiences of your own – zergworld@hotmail.com

    Thanks.

  18. chrisy58

    Joe,

    I just wanted to thank you for sharing your story. It is one of encouragment and inspiration. I wish you the best as you continue to to battle this disease. Good luck and my you be a blessing to others.

    Best Wishes
    Chrisy

  19. Matt Crane (UK)

    I’m so encouraged that someone in the public eye is raising awareness of our condition. I’ve been a sufferer (in the UK) since 2002. Yes it’s tough, but with faith, determination, a sense of humour and treatment there is no need to stop speaking. In fact the more we speak the more people ask – what’s wrong with your voice? The perfect opportunity for us to share why we sound the way we do. Politics aside, I have the utmost respect for Robert Kennedy Jr for continuing to speak publicly despite the condition. FYI Scott Adams – author of the “Dilbert” comic strip also has Spasmodic Dysphonia (aka Laryngeal Dystonia) and now incorporates that into his public speaking events on the funny side of office life. If they can do it – so can we – keep talking people!!!

  20. E. Bates

    I have had the same affliction since early 2000. Not fun but I gave up apologizing for my voice a long time ago and decided that people will just have to listen a little closer to me when I talk. AND THAT’S not a bad thing altogether. Thank’s so much for sharing all of this. I’ve e-mailed the article to all my friends.

  21. Barbara White

    I had Spasmodic Dysphonia and had the SLAD surgery at UCLA by Dr. Gerald Berke. It was successful. I’m wondering why Robert Kennedy doesn’t use Botox. That worked great for me but had to have shots every 3 or 4 months. It gave me a completely normal voice. I now have another voice disorder. Pardoxal Vocal Fold Mootion. My voice is normal most of the time but it affects my breathing. I probably had both disorders together but the SD was more promonate until I had the surgery. I did have some breathing difficulties before the surgery but not all the time. I know the Kennedy’s can afford Botox injections every few months and that in itself would give him a normal voice.

    • Barbara – RFK Jr. does get Botox shots every 3-4 months and has been on this course of treatment for a few years now. Unfortunately, as you know the effect is only temporary and doesn’t seem to restore full normal voice function in his case.

  22. RJ LaPierre

    I admire Robert Kennedy’s work as an author “Deadly Immunity” and was curious as to what was affecting his speech. Thank you for the information.

  23. Barbara White

    So glad that RFKennedy has found the solution for his voice. I’ve wondered when he would get the message. That’s great.

    Be blessed
    Barbara White

  24. Frances E. Willett

    I’ve been trying to send this page to my mother. Would appreciate it if it would go through. She has been very involved with my healing for SD. I would like her to read this article but it won’t go through to her.

    Thanks,
    Barbara White

  25. Mark P. Kessinger

    I just came across this site. I have lived with spasmodic dysphonia for years. The real kicker? I was an opera performance major in college. When I was younger, I used to receive many compliments on my speaking, as well as singing voice. When I was first diagnosed, Botox was not around, so there was really no way to treat the symptoms. My otolaryngologist recommended speech therapy, which I quit after about a year because I realized it was making matters worse (by making me more self-conscious of my speech). So I’ve just sort of lived with it. Sometimes it’s barely noticeable; under stress, however, I can have a hard time making myself understood. It has been frustrating beyond belief, because, apart from the disorder, I am a well-spoken, fairly articulate person. But it has held me back both personally and professionally.

    So, now, I am considering the botulinim toxin injections. Was wondering if anybody here has had any experience with that treatment, and what the quality of that experience might have been?

  26. Joe

    The following doctor says he can cure spasmodic dysphonia very quickly by using a few uh umms and finding your natural tone. Check out the website voice-doctor.com

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