For those who are unable to access the audio file, attached is a rough transcript of the part of the interview dealing with SD. Thanks to Lylia Bennett for writing this down. The interview is the property of The Diane Rehm Show, WAMU/NPR and is reprinted here by permission.DR - Diane Rehm
RFK - Robert F. Kennedy, Jr.
DR: Bobby Kennedy you were talking before the break about these problems that your own children have with asthma. You, like me, have Spasmodic Dysphonia. You receive injections of Botulinum Toxin injections into your vocal cords to help you with that. Talk about Spasmodic Dysphonia, how you were finally diagnosed and how it has affected your life.
RFK: I have a tremble in my voice, particularly when I first start talking. I started getting letters and e-mails from people who saw me on TV or heard me on the radio. Most of them were from women because it makes my voice sound like I am crying. I was getting these letters, almost all of them from women, who said, “I saw you on the TV and it is so great to see a man who can, you know, share his emotions in public.” I was thinking, “Yeah, for every woman that writes me there are 10 guys out there who are saying, you know, “Look at this crybaby!” And then somebody wrote me a letter saying you have Spastic – Spasmodic Dystonia. And actually about three or four people wrote me that letter and one of them had the name of a doctor in New York, Dr. Andrew Blitzer who is one of the national authorities on it and I went to him and he said, “Yes, you have it.” So now I take these shots. Actually, as you know, they are shots you get Botox right into your vocal cords. They shoot it through your throat. I have to do it, like every four months. But I have been out of the country all summer, so my voice is very shaky right now because of that because I haven’t had my recent shots.
DR: I wanted people to understand that you do have that problem. How long did it take you finally to get a diagnosis after you started receiving those letters? Did you believe what you were hearing from people?”
RFK: I didn’t really know one way or the other, you know, but I got three or four letters saying you have this.
DR: Yes.
RFK: I went to the Dr. and he said, “Yes, you definitely have it.”
DR: And now you are on the Board of Directors, as I am, of the National Spasmodic Dysphonia Association.
RFK: That’s right.
DR: Good for you!
RFK: And you too. You’ve done a lot of great work in calling people’s attention to it.
DR: Well, it’s something that people do need to understand and, I hope, appreciate that does happen more frequently, actually to women than it does to men, as women age. But, you know, people call attention to it and wonder whether it’s simply nervousness or whatever it is, but it’s clearly something else. But now let’s get back to your book…
