Re: get the word out to major academic hospitals/clinics

[Guest guest]

I guess I still don't totally understand what you are wanting us to do.In one e-mail, you talk about pressing to get a name of a doctor who may be willing to see us. That is something I will not do for two reasons. 1) I do not make phone calls and 2) I have no intention of driving 15 hours away to see a doctor... and to lead them on as if I am really going to do that is not fair to them.

But then you talk about writing our stories and sending them through e-mail to hospitals. That is definitely something I would do, if we could find a list of places to send them.But the two things are totally different and have two different purposes--the first (to me at least) is trying to get in to see a specialist (which is not feasible for me at this point) and the second is to get the word out there to doctors.

So can you please clarify what exactly you are wanting us to do? The first, the second, both?---------------------------------------------------------

♥

" Hope is more than a word; it's a state of being. It's a firm belief God will come through. Life brings rain... hope turns every drop into the power to bloom like never before. " -Holley Gerth ♥

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i've been told we have 1500 members;most write their stories very well. now we can put to use our writing ability to let the medical community know how this group suffers daily with " sounds/visuals " . it is my belief that we must start with major neurology depts in large reknown facilities like johns hopkins,boston childrens hospital/harvard medical,strong memorial/univ. of rochester,cleveland clinic and mayo clinic just to name a few. it is my belief in this condition that the brain is interpreting innocent sounds incorrectly as danger/threat. there is an immediate,involuntary fear response where anger builds(fight/flight). if we can start with neurology/neuroscience persons and continue to press for referrals and suggestions i believe we will succeed in finding a few advocates in a position of importance to help our cause. we must get our stories from the blog out into the light of day. but we need everyone to participate because no one(on the outside)knows about us or our stories. our stories/struggles need to find a way to the medical community. are we up for the challenge??????

[Guest guest]

sarah, i am presently calling and emailing different medical professionals who

may be able to help us. most say they never heard of misophonia or 4s and are

unable to help for that reason. i explain that they may in fact be able to help

or point us in the right direction with a personal referral(so i might talk to

them) to someone else they know who they think may help. by referral i mean its

another person with expertise i can converse with as we search for the right

someone who will further our cause. its not someone i would necessarily travel

to see unless they wished me to. this is detective work;its taking ones time and

talking with some of the smartest people in research,neurology,brain studies etc

so they know about our group of sufferers. its letting the medical community

know of our plight and our members. someone out there will surely take up this

cause if we can locate them. its not easy but the word has to get out. you can

do this any way you want. i do it my way which has gotten me conversations with

some great medical people. you can too and multiply it by 1500 if everyone gives

it a go.

>

> >

> >

> > i've been told we have 1500 members;most write their stories very well. now

> > we can put to use our writing ability to let the medical community know how

> > this group suffers daily with " sounds/visuals " . it is my belief that we must

> > start with major neurology depts in large reknown facilities like johns

> > hopkins,boston childrens hospital/harvard medical,strong memorial/univ. of

> > rochester,cleveland clinic and mayo clinic just to name a few. it is my

> > belief in this condition that the brain is interpreting innocent sounds

> > incorrectly as danger/threat. there is an immediate,involuntary fear

> > response where anger builds(fight/flight). if we can start with

> > neurology/neuroscience persons and continue to press for referrals and

> > suggestions i believe we will succeed in finding a few advocates in a

> > position of importance to help our cause. we must get our stories from the

> > blog out into the light of day. but we need everyone to participate because

> > no one(on the outside)knows about us or our stories. our stories/struggles

> > need to find a way to the medical community. are we up for the

> > challenge??????

> >

> >

> >

>

[Guest guest]

I know I am---can you get a list of emails and we can post a date that we want to have our stories/emails sent? I think we should send them around the same date so that they take notice. From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of Greg ZarichnySent: Monday, April 18, 2011 8:54 AMTo: Soundsensitivity Subject: get the word out to major academic hospitals/clinics i've been told we have 1500 members;most write their stories very well. now we can put to use our writing ability to let the medical community know how this group suffers daily with " sounds/visuals " . it is my belief that we must start with major neurology depts in large reknown facilities like johns hopkins,boston childrens hospital/harvard medical,strong memorial/univ. of rochester,cleveland clinic and mayo clinic just to name a few. it is my belief in this condition that the brain is interpreting innocent sounds incorrectly as danger/threat. there is an immediate,involuntary fear response where anger builds(fight/flight). if we can start with neurology/neuroscience persons and continue to press for referrals and suggestions i believe we will succeed in finding a few advocates in a position of importance to help our cause. we must get our stories from the blog out into the light of day. but we need everyone to participate because no one(on the outside)knows about us or our stories. our stories/struggles need to find a way to the medical community. are we up for the challenge??????

[Guest guest]

I just looked on the National Institute of Health website and found an email for the Neuropsychology Lab which does research into such things as memory, attention, and perception. I think they would be a great place for an mass email of our stories. From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of Kathy HoweSent: Monday, April 18, 2011 10:43 PMTo: Soundsensitivity Subject: RE: get the word out to major academic hospitals/clinics I know I am---can you get a list of emails and we can post a date that we want to have our stories/emails sent? I think we should send them around the same date so that they take notice. From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of Greg ZarichnySent: Monday, April 18, 2011 8:54 AMTo: Soundsensitivity Subject: get the word out to major academic hospitals/clinics i've been told we have 1500 members;most write their stories very well. now we can put to use our writing ability to let the medical community know how this group suffers daily with " sounds/visuals " . it is my belief that we must start with major neurology depts in large reknown facilities like johns hopkins,boston childrens hospital/harvard medical,strong memorial/univ. of rochester,cleveland clinic and mayo clinic just to name a few. it is my belief in this condition that the brain is interpreting innocent sounds incorrectly as danger/threat. there is an immediate,involuntary fear response where anger builds(fight/flight). if we can start with neurology/neuroscience persons and continue to press for referrals and suggestions i believe we will succeed in finding a few advocates in a position of importance to help our cause. we must get our stories from the blog out into the light of day. but we need everyone to participate because no one(on the outside)knows about us or our stories. our stories/struggles need to find a way to the medical community. are we up for the challenge??????

[Guest guest]

i'm wondering would it be potentially more effective to compile our collective

stories (short versions, of course) and send them along to places in one go? it

may be forceful/useful to see, all at once, how many people are impacted and the

severe disruption it creates in leading our normal lives...

>

> i've been told we have 1500 members;most write their stories very well. now we

can put to use our writing ability to let the medical community know how this

group suffers daily with " sounds/visuals " . it is my belief that we must start

with major neurology depts in large reknown facilities like johns hopkins,boston

childrens hospital/harvard medical,strong memorial/univ. of rochester,cleveland

clinic and mayo clinic just to name a few. it is my belief in this condition

that the brain is interpreting innocent sounds incorrectly as danger/threat.

there is an immediate,involuntary fear response where anger

builds(fight/flight). if we can start with neurology/neuroscience persons and

continue to press for referrals and suggestions i believe we will succeed in

finding a few advocates in a position of importance to help our cause. we must

get our stories from the blog out into the light of day. but we need everyone to

participate because no one(on the outside)knows about us or our stories. our

stories/struggles need to find a way to the medical community. are we up for the

challenge??????

>

[Guest guest]

I just think that the more individual letters/emails they receive, the more of an impact it would make. It’s easy just to ignore one. From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of sullivnjSent: Wednesday, April 20, 2011 4:26 AMTo: Soundsensitivity Subject: Re: get the word out to major academic hospitals/clinics i'm wondering would it be potentially more effective to compile our collective stories (short versions, of course) and send them along to places in one go? it may be forceful/useful to see, all at once, how many people are impacted and the severe disruption it creates in leading our normal lives...>> i've been told we have 1500 members;most write their stories very well. now we can put to use our writing ability to let the medical community know how this group suffers daily with " sounds/visuals " . it is my belief that we must start with major neurology depts in large reknown facilities like johns hopkins,boston childrens hospital/harvard medical,strong memorial/univ. of rochester,cleveland clinic and mayo clinic just to name a few. it is my belief in this condition that the brain is interpreting innocent sounds incorrectly as danger/threat. there is an immediate,involuntary fear response where anger builds(fight/flight). if we can start with neurology/neuroscience persons and continue to press for referrals and suggestions i believe we will succeed in finding a few advocates in a position of importance to help our cause. we must get our stories from the blog out into the light of day. but we need everyone to participate because no one(on the outside)knows about us or our stories. our stories/struggles need to find a way to the medical community. are we up for the challenge??????>