Robert F Kennedy Jr. accidentally turns attention to Dystonia

Did anybody hear Robert F Kennedy Jr's interview on Larry King Live recently? Apparently he was trying to gain attention for energy conservation, but instead, concern over the sound of his voice has turned the spotlight to something else: Spasmodic Dysphonia.

You can read the story HERE

Tags: dysphonia, dystonia, famous people, interviews, robert f kennedy jr

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Permalink Reply by beka on July 7, 2008 at 12:00pm: Yup , saw this too. And already posted a note on his site :
TO GET INVOLVED MORE. I wrote this to him !!! Write ! Be Heard.
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This will not be a political question, but a question focused on cause participation. Spasmodic Dysphonia is not a life-threatening disorder, it does respond to Botox injections every 3 months. Hopefully Dr. Andrew Blitzer is doing the injections as he is one of the best in NYC when it comes to treating dysphonia.

However, I do have one objection; if being an Honorary Board member for http://www.dysphonia.org, http://www.dystonia-foundation.org and http://www.dystonia-parkinsons.org, why not “come out ” with the disorder ? It would certainly lessen questions such as those pertaining to vocal cord cancer and other medical rumors etc. after being on Larry King Live.

NIH Funding for dystonia is lousy when compared to PD and tremor. It seems that most scientists have turned to PD due to Michael J. Fox and his massively raised $$$ millions. Dystonia can be an incredibly disabling disorder. I know, as I have dystonia but still work as a ICU RN and NP here in NYC.

The Dystonia Community needs a bit of active, not passive or simply the lending of a famous name to a cause, BUT participation from those who can help make a change.

beka serdans, RN, MS, NP
Founder
http://www.care4dystonia.org; ▶ Reply to This

Permalink Reply by Ellen S on July 7, 2008 at 3:14pm: Beka,

Why don't you post the link to your message here too? That would be great!!; ▶ Reply to This

Permalink Reply by beka on July 7, 2008 at 5:35pm: How do I do this ??

beka; ▶ Reply to This

Permalink Reply by TWISTEDJAM on July 7, 2008 at 3:28pm: I'm a die hard Larry King fan and I'm sorry I did'nt get to watch this episode!

However I'm sure this will be repeated and broadcasted all over the news...which is a good thing!

Thanks for posting Ellen!

Grace; ▶ Reply to This

Permalink Reply by Robin Wood on July 7, 2008 at 9:50pm: You know what's sad ... he probably doesn't even have a clue to what dystonia really entails, no more then any of us did in the beginning.

There's probably no doc that has sat him down to expain that dystonia can and does progress; most of us started out just like him with basically a focal dystonia. Mine started in my eyes, no one ever told me, nor did I get it from any information I was able to find on the internet that my dystonia would or could progress to where it is now today. I was told I had a focal dystonia called blepharospasm, focal pertaining to or being confined to one area ... period end of subject. I was in for the shock of my life 5 years later when I started to progress, I was not prepared.

Robin; ▶ Reply to This

Permalink Reply by beka on July 8, 2008 at 8:14pm: Oh, I'm sure he has a clue about dysphonia. All the Kennedys are speakers. I have wonered if others within the family have dysphonia , or is it the Bostonian acccent ?
RFK, Jr, like his uncle Ted, has access to the best healthcare in the country and worldwide , if need be. Belonging as a Honorary Board member of a nonprofit has its duties, which each of the groups directors should be implementing. If not, then why be an Honorary Board member ? To lend your name...

Send your comments directly to http://rfkin2008.wordpress.com/voter-questions/ or drop an email to:

RFKin2008@cs.com

Don't be shy, be heard. The sites' motto for RFK, Jr is :
“The present shouts…the future whispers. Our job is to amplify the voice of the future.” — RFK Jr.

So. let's stop whispering and SHOUT.

beka; ▶ Reply to This

Permalink Reply by luvslulu on July 20, 2008 at 2:12am: I have to agree with Robin here. I was told the same thng..that MY dystonia(isn't it interesting that we "claim it" by calling it "mine"?) was going to "peak out" after 5-6 years. I am now in my 15th year and see progressions coming on.. It may stay in the same area for me ..meaning shoulders, neck, jaw and tongue.. but I feel that it is more intense now than ever. Could that be from long term use of Klonopin or long term Botox shots? Who knows for sure... but one thing I feel is for sure....RFK,JR is aware of Botox, for I have heard him talk sometimes sounding great and then hear him talk another time sounding strained.. like he is "due " for his shots. I did not see this episode on Larry King but I DID hear alot about it thru the news media.. and that's a good thing for all of us! I also seem to remember him talking about it in the past ,but I can't remember where or when I heard him discuss it.
Luvslulu... aka Penny; ▶ Reply to This

Permalink Reply by Trudy on July 19, 2008 at 1:08am: I was reading through these posts and when I read Robin's I felt a sense of relief. What I mean is, I thought it was just me that felt clueless about dystonia. I have the feeling my doctor let me out of the hospital with every expectation that all this will just go away. I honestly can't even remember her uttering the word 'dystonia' in discussing my condition.

I apologize for getting off on a tangent from the original post. I agree though that it is imperative that the community speak up -- loudly.

Trudy; ▶ Reply to This

Permalink Reply by beka on July 19, 2008 at 4:22pm: Tell us more about " Hospital Experiences , Physician Reactions ".

beka; ▶ Reply to This

Permalink Reply by Robin Wood on October 18, 2008 at 9:35am: Did anybody catch Larry King last night with RFK Jr ??? .... I did !!!

Wow I didn't realize his voice was that bad, I had missed the interview back in July.

His voice sounded strained, like it was a huge challenge to speak and he was having to force the words out with all his might. The way he sounded is excatly the way I feel when I am trying to walk and my shin muscles are in spasms ... it's like having to push 100 lbs blocks with my legs with each and every step, there is so much force on my shin muscles.

Beka, did you ever get a reply from the letter you wrote ???

Robin; ▶ Reply to This

Permalink Reply by Robin Wood on October 18, 2008 at 9:53am: Here is a couple video's with RFK Jr

http://www.truveo.com/Robert-Kennedy-Jr-on-impeachment-with-Amy-Goo...

Here is last nights episode

http://www.truveo.com/Robert-Kennedy-Jr-and-Michael-Reagen-on-Larry...; ▶ Reply to This

Permalink Reply by beka on October 19, 2008 at 7:23pm: No reply at all... I just dont understand what he and so many other celebrities are doing on some of these dystonia non profits boards, yet are not out there discussing dysphonia, lending their voice, fundraising and celebrity connections to Dystonia...

Any thoughts ...? Are they all embarrassed or are they being underutilized... Having name on a Advisory Board does nothing if there is no ACTION on their part...

beka; ▶ Reply to This