Re: 20/20 Is looking for video diaries

[Guest guest]

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.

>

[Guest guest]

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.> >>

[Guest guest]

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.

[Guest guest]

I believe they are trying to capture visible reactions to trigger sounds or

situations.....

You would probably have to have some one else film you and follow you or your

child around.

MJ

[Guest guest]

I will try to do this. More people should be aware of this so there may be

someone who could help find a better way to deal with it.

>

> 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.

>

[Guest guest]

I just submitted a video. I can send the video to anyone who wants to see what I

sent.

>

> 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.

>

[Guest guest]

I did not read this as literally as you two. I pictured a video that would show

a trigger sound (leaf blower, car stereo bass, balls bouncing, eating, etc) with

a voice-over describing how it makes you feel. Maybe a video of you walking in

the hall at school or work or at the mall or in the yard with headphones on,

again with a voice-over telling about the trigger sounds and how intolerable

they are and the rage/panic/anguish you'd feel without the ear protection.

I doubt that this highly-regarded news show would want to sensationalize this

but even if they do, it's up to us to go about it with dignity and not allow

that to happen.

> > >

> > > 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.

> > >

> >

>

[Guest guest]

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.

> >

> >

>

[Guest guest]

I would like to see it, but I don't know how you get it to me. Hope you know how. Let me know. ________________________________________________________________________> >> > 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.> >>

[Guest guest]

Thank you for showing yourselves: this might very well be a turning point for

all of us.

> > > > > >

> > > > > > 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.

> > > >

> > > >

> > >

> >

> >

>