Re: Re: 20/20 Is looking for video diaries

April 27, 2012

I TOTALLY agree.. I don't 'lash out' when something bothers me... I wouldn't have any friends if I did, since so many sounds bother me. The most I do is glare at someone if they won't stop a noise--but I don't let them see me glare.

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Not sure I get this. Our reactions? Do they think we go into a violent tantrum and start frothing at the mouth? I don't think a video of me being tense and gritting my teeth would be all that helpful or informative. Talking with people is one thing. Wanting footage of " reactions " makes it sound like a carnival side show.

>

> http://abcnews.go.com/Health/mailform?id=16211628

>

> Send Us Your Misophonia Video Diaries

> Share Your Story With '20/20'

> THE BELOW WAS COPIED AND PASTED FROM THE WEBSITE

> " Misophonia is a condition characterized by extreme and persistent negative reactions to simple everyday sounds.Misophonia is a condition characterized by extreme and persistent negative reactions to simple everyday sounds. Symptoms include responding with rage or anxiety to offending noises.

>

> Do you suffer from misophonia? " 20/20 " wants you to share your story by recording a video diary of your reactions to audio triggers. As a video diary may be difficult to shoot in some circumstances, footage can also be recorded by a friend or family member. We also ask that your filming of other people not be done surreptitiously; cameras should be in full view.

>

> And then there's info where to upload the video and your contact info. I think that as many people who can do this should do it. We won't all be used, but the numbers will be impressive and may get us even more attention.

>

April 27, 2012

I read the request differently. I do not think they are asking for a home-movie of us reacting to our trigger sounds. I think they are asking for something more akin to a diary entry, but in video format. Like they want me to sit in front of my video camera and tell about when I was 22 and I actually punched someone for chewing his gum louder after I asked him to chew it more quietly. Or how I had little cards made up asking people to chew with their mouths shut and I would hand them to noisy eaters in movie theaters (because turning around and telling them that they eat like a cow and they need to either learn to keep their f@$%ing mouth shut or stay in the pasture NEVER, EVER worked - I can't imagine why ;-) ).Sandy Both of you make excellent points. Submit them to the site as comments? Liesa > > > > Not sure I get this. Our reactions? Do they think we go into a > violent tantrum and start frothing at the mouth? I don't think a video > of me being tense and gritting my teeth would be all that helpful or > informative. Talking with people is one thing. Wanting footage of > "reactions" makes it sound like a carnival side show.

April 28, 2012

That's exactly what I tried to explain to the 20/20 producers. Sent from my iPhone

For me, the real video is deep inside. I've learned to keep those reactions hidden away from everyone for almost 50 years now. The only real "picture" others see is the fleeing or attitude change... they have no idea how much I am hurting on the inside. How would I video that?

> >> > http://abcnews.go.com/Health/mailform?id=16211628> > > > Send Us Your Misophonia Video Diaries> > Share Your Story With '20/20'> > THE BELOW WAS COPIED AND PASTED FROM THE WEBSITE> > "Misophonia is a condition characterized by extreme and persistent negative reactions to simple everyday sounds.Misophonia is a condition characterized by extreme and persistent negative reactions to simple everyday sounds. Symptoms include responding with rage or anxiety to offending noises. > > > > Do you suffer from misophonia? "20/20" wants you to share your story by recording a video diary of your reactions to audio triggers. As a video diary may be difficult to shoot in some circumstances, footage can also be recorded by a friend or family member. We also ask that your filming of other people not be done surreptitiously; cameras should be in full view. > > > > And then there's info where to upload the video and your contact info. I think that as many people who can do this should do it. We won't all be used, but the numbers will be impressive and may get us even more attention.> >>

April 28, 2012

As I've told you before Bernadette, I am incredibly proud of you and and your whole family for putting yourself out like that. The producers also told me they want visual experiences from people from their triggers. As i told them most of us adults simply don't do that and those who do would be hesitant to show it. They said they'd put the word out and see why they get. I like Arabs idea of doing a VoiceOver. But whatever any on does is a step in the right direction as the people shown with this to the public the better Sent from my iPhoneOn Apr 28, 2012, at 9:08 AM, "wouldlovetofindacurefor4s" wrote:

They ARE looking for people's reactions to their triggers. We are the

family that 20/20 filmed. My daughter is only 14 and she does NOT have

control over her reactions. My daughter does go into a rage and can't

control herself. Her last rage lasted a full hour a few weeks ago just

because I said, "hi" and my voice cracked. This rage included hitting

and verbal attacks. I did not want to put my daughter through this. It

would not be fair to deliberately trigger her and put her through that

much suffering. She has too much guilt and depression following the

rage. I am proud of my daughter for doing this but scared exposing

our horrific story for all to see. (Including talking about her rage and

suicide attempts. ) Our only purpose is to help raise awareness to help

find a cure. We went into the city to be interviewed by Vargas

and with Dr. J., then the cameras and producers came to our house on

Thursday at 6:30am and stayed the entire day until 7:30pm. They have

been wonderful. They were ALL VERY compassionate to my family

throughout this whole experience. Even the camera guy and sound guy

gave us a hug and a kiss when leaving our house. I have a big event I

have to attend today but when I return I will write more about our

experience. I PRAY we did JUSTICE for all of you who suffer so

greatly. I pray this helps someone. I pray this helps raise awareness.

On a side note, I got an email from one of 's old therapist saying

she had another patient come in who also suffers from misophonia and she

thanked me for educating her on it. That made my day.

> > > >

> > > > Not sure I get this. Our reactions? Do they think we go into a

> > > violent tantrum and start frothing at the mouth? I don't think a

> > video

> > > of me being tense and gritting my teeth would be all that helpful

or

> > > informative. Talking with people is one thing. Wanting footage of

> > > "reactions" makes it sound like a carnival side show.

> >

>

April 28, 2012

i just want to say thank you , and thank you again, for you and your families courage and strength..you are a godsend..

Subject: Re: 20/20 Is looking for video diariesTo: Soundsensitivity Date: Saturday, April 28, 2012, 9:08 AM

They ARE looking for people's reactions to their triggers. We are thefamily that 20/20 filmed. My daughter is only 14 and she does NOT havecontrol over her reactions. My daughter does go into a rage and can'tcontrol herself. Her last rage lasted a full hour a few weeks ago justbecause I said, "hi" and my voice cracked. This rage included hittingand verbal attacks. I did not want to put my daughter through this. Itwould not be fair to deliberately trigger her and put her through thatmuch suffering. She has too much guilt and depression following therage. I am proud of my daughter for doing this but scared exposingour horrific story for all to see. (Including talking about her rage andsuicide attempts. ) Our only purpose is to help raise awareness to helpfind a cure. We went into the city to be interviewed by Vargasand with Dr. J., then the cameras and producers came to our house onThursday

at 6:30am and stayed the entire day until 7:30pm. They havebeen wonderful. They were ALL VERY compassionate to my familythroughout this whole experience. Even the camera guy and sound guygave us a hug and a kiss when leaving our house. I have a big event Ihave to attend today but when I return I will write more about ourexperience. I PRAY we did JUSTICE for all of you who suffer sogreatly. I pray this helps someone. I pray this helps raise awareness.On a side note, I got an email from one of 's old therapist sayingshe had another patient come in who also suffers from misophonia and shethanked me for educating her on it. That made my day.> > > >> > > > Not sure I get this. Our reactions? Do they think we go into a> > > violent tantrum and start frothing at the mouth? I don't think a> > video> > > of me being tense and gritting my teeth would be all that helpfulor> > > informative. Talking with people is one thing. Wanting footage of> > > "reactions" makes it sound like a carnival side show.> >> >>

April 28, 2012

That is so great- I can't thank you enough for doing that for all of us- you and your daughter are wonderful!Did you happen to get a sense of how the show was portraying misophonia ie: as an auditory or a neurological problem? Again can't thank you enough- you're both very courageous. To: Soundsensitivity Sent: Saturday, April 28, 2012 12:08 PM Subject: Re: 20/20 Is looking for video diaries