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I joined the spouse one today. I am sure it will be some help. I am not sure

that I can keep up with two groups, but am giving it a try. Myrna

New Member

I am a new member. My husband is 70 and has Alzheimer's or LBD...who knows

which???? I probably just want to listen and read for a little while.

Thanks.

Myrna

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Welcome Myrna ==

I " diagnosed " my dad after reading experiences on the

lewybodyjournal.com website. Rather than reading the main journal --

which is very long and in depth, I recommend reading the " other "

stories. They are shorter and give you a variety of peoples

experiences w/ their loved ones. I saw my Dad and our family over

and over and over again in those stories. It was so helpful to

finally understand what was going on.

Blessings,

Lori

> Welcome Myrna,

>

> If you go to the LBD page to get to caring spouses group, do stop

and read lots of the links and things. You can also go back and

read old messages if you go to the Yahoo site.

>

> Sorry you have to be here. You can request a brochure and also

read the news letter (1-3) and get some good insight. I do believe

if you find an appropiate Nero, you should be able to get a proper

diagnosis. The brochure will help you decide also and help you to

determine what is going on. As you will read from the experience of

many here, been there, done that. It will help you anticipate what

is coming and what you might be able to avoid.

>

> Keep reading and let us know you are there and what is happening.

Someone else has always been where you are.

>

> Let people know where you are located so you might find others who

are in your area and can be a real support. We are having our first

caregivers meeting in Florida in Sepember and I am sure Carol will

be updating everyone soon again. We are hoping to have more support

groups going in the near future.

>

> Donna R

>

> New Member

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Welcome Phyllis ---

A suggestion for the walking -- get an alarm system. It will alert

you she is getting up -- and the alarm may become a reminder to her

that she's not supposed to walk. My Dad had one in the hospital

when his pneumonia caused severe dilarium (sp). It really helped.

Lori

In LBDcaregivers , " phyllis_40206 "

<phyllis_40206@y...> wrote:

> OMG - my sister found this site last night and forwarded it to me

> this morning. i have been reading messages on and off all day.

i

> thought i had sent this before, but it didn't get sent somehow.

>

> my mom was dx 2-1/2 years ago and has been living with me since.

i

> have been her major caregiver and i am absolutely thrilled to find

> this site.

>

> i have already learned alot and it is sooooo nice to know that

there

> are others out there going through the same things; coherent when

> others around; the spells; the disorientation and being nasty....

>

> mom has gone down so drastically in the last month that we have

> called in hospice and goten a hospital bed. hospice has been a

god

> sent. just to know that i call call someone during the night and

get

> some answer regarding medicine, etc.

>

> we are currently trying our best to inforce the wheelchair only

> policy. mom forgets that she can't walk and sometimes just gets

up

> and takes off. she ends up having to call me, and 9 out of 10

times

> ends up having a " spell " .

>

> i don't want to make mom feel like she is a burden or that we

don't

> want her here.....we will keep her as long as we are able.....but

i

> cannot keep lifting her off the floor. she has lost so much

weight

> that she only weighs 110, however, as you all know - when she is

out

> she is dead weight and it is beginnning to have an adverse effect

on

> my back.

>

> i have sent an e-mail regarding namenda. i swear sometimes i

think

> the doctors don't know what is what. i guess that is why they

call

> it practicing. our nuerologist kept insisting that all

the " spells "

> were a result of a drop in blood pressure and had mom on so many

meds

> to raise her bp that it was going up to 240 + - and we have since

> decided that it is not the bp alone causing the seizures.

>

> after we called in hospice, our neurologist called mom and told

her

> that she was concerned about the care she was being given and the

> treatment she was receiving. i was not home at the time she

called

> and spoke with her later. i was amazed that she would question

the

> care my sister and i are giving mom - amazingly enough she can

> remember that and is now questioning so many things i do - things

> that we have been doing the same way for so long. we have taken

her

> off all the meds for bp and she is a bit better. not too much,

> however, we will take any little bit of improvement.

>

> needless to say, the dr. will no longer treat mom. that is fine

with

> us as she is associated with a learning hospital and we think she

> would keep mom alive as long as she could regardless of

> anything....just so that she can record it somewhere.

>

> i love my mother very much, however, i don't want her to be kept

> alive just to be kept alive. she is so weak, has no muscles left,

is

> so stiff and in pain - oh yes, the dr. said this is a painless

> disease and the concept of keeping her comfortable until she dies

doe

> not exist! - and she was a vital, energetic person who was always

the

> first one to go somewhere or party! now she is awake maybe 4

hours a

> day and spends most of her time in bed and confused. this is not

the

> quality of life mom wants and she has said so in lucid moments.

>

> anyway, enuf' rambling. i am sure i will be posting messages and

> seeking advice quite often. i am so relieved to find other people

> who are living the same life as i am. the dr. saw her once every

6-8

> months and did not see all that we have.

> phyllis

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what a great idea. i find that i can't relax at all - day or night - since i

never know when she is going to be jumping up. where do you get these alarms,

does anyone know? that would be wonderful as mom can't remember she can't

walk.......sounds perfect. thanks too much!

ladpr6 wrote:Welcome Phyllis ---

A suggestion for the walking -- get an alarm system. It will alert

you she is getting up -- and the alarm may become a reminder to her

that she's not supposed to walk. My Dad had one in the hospital

when his pneumonia caused severe dilarium (sp). It really helped.

Lori

In LBDcaregivers , " phyllis_40206 "

<phyllis_40206@y...> wrote:

> OMG - my sister found this site last night and forwarded it to me

> this morning. i have been reading messages on and off all day.

i

> thought i had sent this before, but it didn't get sent somehow.

>

> my mom was dx 2-1/2 years ago and has been living with me since.

i

> have been her major caregiver and i am absolutely thrilled to find

> this site.

>

> i have already learned alot and it is sooooo nice to know that

there

> are others out there going through the same things; coherent when

> others around; the spells; the disorientation and being nasty....

>

> mom has gone down so drastically in the last month that we have

> called in hospice and goten a hospital bed. hospice has been a

god

> sent. just to know that i call call someone during the night and

get

> some answer regarding medicine, etc.

>

> we are currently trying our best to inforce the wheelchair only

> policy. mom forgets that she can't walk and sometimes just gets

up

> and takes off. she ends up having to call me, and 9 out of 10

times

> ends up having a " spell " .

>

> i don't want to make mom feel like she is a burden or that we

don't

> want her here.....we will keep her as long as we are able.....but

i

> cannot keep lifting her off the floor. she has lost so much

weight

> that she only weighs 110, however, as you all know - when she is

out

> she is dead weight and it is beginnning to have an adverse effect

on

> my back.

>

> i have sent an e-mail regarding namenda. i swear sometimes i

think

> the doctors don't know what is what. i guess that is why they

call

> it practicing. our nuerologist kept insisting that all

the " spells "

> were a result of a drop in blood pressure and had mom on so many

meds

> to raise her bp that it was going up to 240 + - and we have since

> decided that it is not the bp alone causing the seizures.

>

> after we called in hospice, our neurologist called mom and told

her

> that she was concerned about the care she was being given and the

> treatment she was receiving. i was not home at the time she

called

> and spoke with her later. i was amazed that she would question

the

> care my sister and i are giving mom - amazingly enough she can

> remember that and is now questioning so many things i do - things

> that we have been doing the same way for so long. we have taken

her

> off all the meds for bp and she is a bit better. not too much,

> however, we will take any little bit of improvement.

>

> needless to say, the dr. will no longer treat mom. that is fine

with

> us as she is associated with a learning hospital and we think she

> would keep mom alive as long as she could regardless of

> anything....just so that she can record it somewhere.

>

> i love my mother very much, however, i don't want her to be kept

> alive just to be kept alive. she is so weak, has no muscles left,

is

> so stiff and in pain - oh yes, the dr. said this is a painless

> disease and the concept of keeping her comfortable until she dies

doe

> not exist! - and she was a vital, energetic person who was always

the

> first one to go somewhere or party! now she is awake maybe 4

hours a

> day and spends most of her time in bed and confused. this is not

the

> quality of life mom wants and she has said so in lucid moments.

>

> anyway, enuf' rambling. i am sure i will be posting messages and

> seeking advice quite often. i am so relieved to find other people

> who are living the same life as i am. the dr. saw her once every

6-8

> months and did not see all that we have.

> phyllis

Welcome to LBDcaregivers.

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Medical supply stores should sell these alarms. ALso places on

line. Try AgelessDesign.org or .com. Also try searches on " aids

for seniors " and variations of that.

THe one in the hospital was a strip Dad layed/sat on that rang when

he tried to get up.

Good luck,

Lori

> > OMG - my sister found this site last night and forwarded it to

me

> > this morning. i have been reading messages on and off all

day.

> i

> > thought i had sent this before, but it didn't get sent somehow.

> >

> > my mom was dx 2-1/2 years ago and has been living with me

since.

> i

> > have been her major caregiver and i am absolutely thrilled to

find

> > this site.

> >

> > i have already learned alot and it is sooooo nice to know that

> there

> > are others out there going through the same things; coherent

when

> > others around; the spells; the disorientation and being nasty....

> >

> > mom has gone down so drastically in the last month that we have

> > called in hospice and goten a hospital bed. hospice has been a

> god

> > sent. just to know that i call call someone during the night

and

> get

> > some answer regarding medicine, etc.

> >

> > we are currently trying our best to inforce the wheelchair only

> > policy. mom forgets that she can't walk and sometimes just gets

> up

> > and takes off. she ends up having to call me, and 9 out of 10

> times

> > ends up having a " spell " .

> >

> > i don't want to make mom feel like she is a burden or that we

> don't

> > want her here.....we will keep her as long as we are

able.....but

> i

> > cannot keep lifting her off the floor. she has lost so much

> weight

> > that she only weighs 110, however, as you all know - when she is

> out

> > she is dead weight and it is beginnning to have an adverse

effect

> on

> > my back.

> >

> > i have sent an e-mail regarding namenda. i swear sometimes i

> think

> > the doctors don't know what is what. i guess that is why they

> call

> > it practicing. our nuerologist kept insisting that all

> the " spells "

> > were a result of a drop in blood pressure and had mom on so many

> meds

> > to raise her bp that it was going up to 240 + - and we have

since

> > decided that it is not the bp alone causing the seizures.

> >

> > after we called in hospice, our neurologist called mom and told

> her

> > that she was concerned about the care she was being given and

the

> > treatment she was receiving. i was not home at the time she

> called

> > and spoke with her later. i was amazed that she would question

> the

> > care my sister and i are giving mom - amazingly enough she can

> > remember that and is now questioning so many things i do -

things

> > that we have been doing the same way for so long. we have taken

> her

> > off all the meds for bp and she is a bit better. not too much,

> > however, we will take any little bit of improvement.

> >

> > needless to say, the dr. will no longer treat mom. that is fine

> with

> > us as she is associated with a learning hospital and we think

she

> > would keep mom alive as long as she could regardless of

> > anything....just so that she can record it somewhere.

> >

> > i love my mother very much, however, i don't want her to be kept

> > alive just to be kept alive. she is so weak, has no muscles

left,

> is

> > so stiff and in pain - oh yes, the dr. said this is a painless

> > disease and the concept of keeping her comfortable until she

dies

> doe

> > not exist! - and she was a vital, energetic person who was

always

> the

> > first one to go somewhere or party! now she is awake maybe 4

> hours a

> > day and spends most of her time in bed and confused. this is

not

> the

> > quality of life mom wants and she has said so in lucid moments.

> >

> > anyway, enuf' rambling. i am sure i will be posting messages

and

> > seeking advice quite often. i am so relieved to find other

people

> > who are living the same life as i am. the dr. saw her once

every

> 6-8

> > months and did not see all that we have.

> > phyllis

>

>

>

>

> Welcome to LBDcaregivers.

>

>

>

>

>

>

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I don't understand how an MRI scan can diagnose that. My doctor tells me that

the brain scans on my husband are negative, but that doesn't mean he doesn't

have AD or LBD, because brain scans are not definitive. Myrna

" but an MRI scan performed in May

of this year finally gave us the diagnosis of probable LBD. " urbanmisfit9

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tears are running down my face. I, too, am so very close with my dad and this

poem says it all. Thank you so much for sharing it with me and everyone else.

I have only been part of this group for 4 days and when I get to work each

morning, this is the first thing I check. It helps me get through the day. I

pray for you and your family.

Laurie

South Bend, IN

urbanmisfit9 wrote:

I came across this mailing group while searching for information on

LBD. The reason I was looking for information is because my father

was diagnosed with dementia almost three years ago when he was just

53-years-old! At first he was misdiagnosed with Alzheimers disease

and then again with hydrocephalus, but an MRI scan performed in May

of this year finally gave us the diagnosis of probable LBD. Sadly my

father's decline has been swift, he has't had the disease three

years yet, but he is already confined to a specially adapted

hospital bed at home. He can't stand let alone walk, is barely

verbal and often has trouble identifying us. Two nurses call to my

parents house four times a day to assist my mom with looking after

my dad. I can honestly say that if you were to ever have asked me at

any point in my life who my hero is I would repliy in a

heartbeat " my dad " . All four of us cherish our father beyond words,

so what we are being forced to deal with right now is a living hell.

I've written several poems to my father one of which I've included

below, to express my love and admiration for this wonderful man.

FATHER

The echo of your voice is always with me

On occasions you've spoke inside my head

I've heard you narrate my thoughts at times

When I've mentally recited things you've said

I'm clinging to the hope you'll be just fine

My pillow bears the stains of desperate tears

I'm still struggling to accept this situation

To lose you is one of my greatest fears

I'm trying real hard to just be strong

Though I'm sure you understand the sheer strain

Bravado has now become so fundamental

To conceal the anguish coursing through each vein

I assumed that you'd be here for most my life

Pictured your joy at watching me succeed

But assumption can often lead to heartache

My misjudgement has caused my heart to bleed

It's like standing on the outside looking in

We know that there is nothing we can do

The hand of fate has dealt a bitter blow

Made the hand of life let slowly go of you

Your dreams have all faded into blackness

I never hear you singing like before

The reality of what we're all enduring

Has completely left me incensed to the core

My memories are pre-eminent recollections

Of all the precious moments we have had

No matter what our precarious future holds

You'll remain my friend, my hero...my dad

Copyright ©2005 Kane

Welcome to LBDcaregivers.

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An MRI can reveal brain atrophy..in my fathers case it

was very noticeable on his MRI...this was brought on

by excessive alcoholism and appeared in the frontal

lobe region (the area responsible for

behaviors)...this explained A LOT of dad's

increasingly verbally/physically aggressive/terrifying

behaviours... of course dad denied he was sick at all

and the was convinced doctors/mother/I were all

crazy....sadly part of the LBD can be extreme

paranoia...

--- urbanmisfit9 wrote:

>

> > I don't understand how an MRI scan can diagnose

> that. My doctor

> tells me that the brain scans on my husband are

> negative, but that

> doesn't mean he doesn't have AD or LBD, because

> brain scans are not

> definitive. Myrna

> > " but an MRI scan performed in May

> > of this year finally gave us the diagnosis of

> probable

> LBD. " urbanmisfit9

> >

> >

> > [Non-text portions of this message have been

> removed]

>

> Hence the fact that we were told and I did state in

> the

> message 'probable LBD!' There is no definate test

> for LBD it can only

> be truly diagnosed through an autopsy

>

>

>

__________________________________________________

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  • 2 weeks later...

Hi and welcome to the group.

Your mom is probably in shock and angry as hell. Who among us would

want to face up to the facts of LBD. If I were in your shoes I would

let her blow off some steam. Its going to be hard for you but please

know that our LO's tend to take out their frustration with their main

caregiver - lucky you. This too shall pass. I learned early on to just

roll with this disease and just be wherever my mother was at. If she

rambled or hallucinated I would just go with it because trying to reason

with someone with LBD is tiring - you can use your energy on something

else.

The next few weeks are going to be rough but eventually you and mom will

be able to pace yourselves and live with your new normal. When you are

able, read some posts and check out the files section for up to date

information.

Hang in there and sending you strength.

Courage

Duvall wrote:

> Hi,

>

> My name is , and I just received the diagnosis of my Mom's LBD

> last Wed. We knew something was wrong, and suspected Alzheimers, but

> I had never heard of LBD. At this point, Mom is crying, yelling at me

> about the diagnosis, calling herself an " idiot, " and " nuts, " and

> saying that she was crucified by the doctors. She's upset, and

> upsetting me terribly. She blames me for making and taking her to the

> doctor's appointments. Does anyone have any ideas on how to deal with

> this? She wants to sue everybody involved, and swears up and down

> that she doesn't have memory problems. Mom will be 81 this year, and

> still gets around fairly well. We thought her memory issues might be

> tied to a couple of falls she took in the last few years, but the

> doctors said no.

>

> Anyways, any ideas you may have would be greatly appreciated!

>

> Thank you,

>

>

>

> __________________________________________________

>

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, i am soo sorry that you ahve the uglies of LBD right now. they are so

hard to deal with. if you can try to distract your mom into thinking about

something else, in other words change the subject, otherwise agree with it and

maybe pretend to call a lawyer to make an appointment for say one month out, and

tell her mom i have an appt with a lawyer we will talke to him;/her about suing

the doc. play along maybe she will calm down then, someimtes you have to do

both inordre for them to calm down. my dad has terrifying night mares that we

hafve to console him thru and sometimes it is hard, as i am the bad guy in his

dreams and i have to assure him that i m not the bad guy but someone hwo wants

to help him. good luck hugs sharon m

Date: 2005/09/11 Sun PM 09:34:52 EDT

To: LBDcaregivers

Subject: New member

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I know I'm replying to an older post, but I'm trying to go through some of

my unread mail.

The MRI probably was looking for strokes. My dad had a cat-scan to rule out

strokes or a brain tumor. When neither were found, LBD was dx'd as the

reason for hallucinations.

Last Friday he had an EEG, a brain waves test. I could see the computer

screen from where I was sitting. There sure was a lot of " mess " on the

screen whenever he had a hallucinogenic episode. I think the test was

looking for seizure activity. Has anyone else's lo had an EEG? The doc

hasn't told me the results yet.

_____

From: LBDcaregivers [mailto:LBDcaregivers ]

On Behalf Of Myrna

Sent: Thursday, September 01, 2005 9:49 AM

To: LBDcaregivers

Subject: Re: New member

I don't understand how an MRI scan can diagnose that. My doctor tells me

that the brain scans on my husband are negative, but that doesn't mean he

doesn't have AD or LBD, because brain scans are not definitive. Myrna

" but an MRI scan performed in May

of this year finally gave us the diagnosis of probable LBD. " urbanmisfit9

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  • 3 years later...

Hello and welcome to the group! It's an exciting time to find

this place because there have been developments lately for possibly

studying this condition which is what we need so badly! I am 35 and

have had this since 10. I'll tell you, my fantasy is the same as

yours!! I'd love to live in a secluded place (beautiful of course)

where only the selected would be there! LOL. Like you said though,

I'd probably be alone. However, if I had that kind of money I'd find

a cure for this stupid condition and then we wouldn't need an

island! Anyhow, welcome and I hope you will find some ideas here

that can help you out in your daily battle!

Darlene

>

> hello everyone-

> i am a new member, just joined a couple days ago. I can't believe

> that a group like this actually exists, and that treatment options

> are being explored (even at the level of the NIH).

> I'm a 31 y/o nurse living in Billings, Montana. I have been

> sensitive to noises for.. i don't know... 15 or 16 years? Gum

> chewing/popping is the worst for me, as is eating loudly and teeth

> scraping on silverware. i haven't been able to enjoy going to a

movie

> in years b/c of the popcorn. i actually fantasize about winning the

> power ball and buying my own island- no popcorn, no gum, and people

> have to pass an " eating test " before being allowed to live on my

> island. :) sadly, i'd probably end up being the only one living

> there! (oh- and keyboard typing)

> i'm tired of thinking i'm the following: crazy, mean, hateful, a

> loner, unable to socialize, unfit for marriage. its depressing. the

> second i hear sounds i can feel my blood pressure/pulse rate/stress

> level rise dramatically and i know this is having a profound effect

> on my health. i've tried xanax and zoloft but to no avail, and i

> can't be taking xanax around the clock for the rest of my life b/c

i

> sure don't want to add an addiction on right now.

>

> so hello- and i can honestly say on this Thanksgiving, i am

> infinitely grateful that a group like this exists.

> - (p.s.- please let me know if i am posting things in the

wrong

> place, etc)

>

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Hi ,

Welcome to the group. It's great that you found us. I loved reading about your

dream of

winning Powerball, I completely relate to that - oh for some relief from this

horrible 4S

thing.

My dream is just to be able to find a cure or more realistically, a treatment

that works. I

really want nothing more than to be able feel calm when other people go about

doing

perfectly normal things, like eating or breathing near to me. I am really

encouraged by the

NIH interest, and even though I live in Sydney, I've made an application to

their study! I'd

do an awful lot to find a solution.

I've had this since I was 11 and I'm now 49. I can still remember days before I

had 4S. It

felt so blissful. This group is full of suggestions of things to try so I hope

you find some

support and inspiration here. It is also seems to be the best place to get the

latest info on

research interests etc. So stay tuned in here.

Best wishes

Ingrid.

>

> hello everyone-

> i am a new member, just joined a couple days ago. I can't believe

> that a group like this actually exists, and that treatment options

> are being explored (even at the level of the NIH).

> I'm a 31 y/o nurse living in Billings, Montana. I have been

> sensitive to noises for.. i don't know... 15 or 16 years? Gum

> chewing/popping is the worst for me, as is eating loudly and teeth

> scraping on silverware. i haven't been able to enjoy going to a movie

> in years b/c of the popcorn. i actually fantasize about winning the

> power ball and buying my own island- no popcorn, no gum, and people

> have to pass an " eating test " before being allowed to live on my

> island. :) sadly, i'd probably end up being the only one living

> there! (oh- and keyboard typing)

> i'm tired of thinking i'm the following: crazy, mean, hateful, a

> loner, unable to socialize, unfit for marriage. its depressing. the

> second i hear sounds i can feel my blood pressure/pulse rate/stress

> level rise dramatically and i know this is having a profound effect

> on my health. i've tried xanax and zoloft but to no avail, and i

> can't be taking xanax around the clock for the rest of my life b/c i

> sure don't want to add an addiction on right now.

>

> so hello- and i can honestly say on this Thanksgiving, i am

> infinitely grateful that a group like this exists.

> - (p.s.- please let me know if i am posting things in the wrong

> place, etc)

>

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,

Welcome to our group. I'm fairly close to you, I'm in western ND, north of Williston.

Anyways, glad you found us. I'm not always able to be on here, but mostly I'm just relieved that this is not something just in my mind.

Well, got heaps to do.

Oh and everyone, for some weird reason, I had a fantastic Thanksgiving without any outbreaks. Today...well...it is a different day!

Happy Friday!

Vicki

To: Soundsensitivity Sent: Thursday, November 27, 2008 9:28:06 PMSubject: Re: new member

Hi ,Welcome to the group. It's great that you found us. I loved reading about your dream of winning Powerball, I completely relate to that - oh for some relief from this horrible 4S thing. My dream is just to be able to find a cure or more realistically, a treatment that works. I really want nothing more than to be able feel calm when other people go about doing perfectly normal things, like eating or breathing near to me. I am really encouraged by the NIH interest, and even though I live in Sydney, I've made an application to their study! I'd do an awful lot to find a solution.I've had this since I was 11 and I'm now 49. I can still remember days before I had 4S. It felt so blissful. This group is full of suggestions of things to try so I hope you find some support and inspiration here. It is also seems to be the best place to get the latest info on research interests etc. So stay tuned

in here.Best wishesIngrid.>> hello everyone-> i am a new member, just joined a couple days ago. I can't believe > that a group like this actually exists, and that treatment options > are being explored (even at the level of the NIH). > I'm a 31 y/o nurse living in Billings, Montana. I have been > sensitive to noises for.. i don't know... 15 or 16 years? Gum > chewing/popping is the worst for me, as is eating loudly and teeth > scraping on silverware. i haven't been able to enjoy going to a movie > in years b/c of the popcorn. i actually fantasize about winning the > power ball and buying my own island- no popcorn, no gum, and people > have to

pass an "eating test" before being allowed to live on my > island. :) sadly, i'd probably end up being the only one living > there! (oh- and keyboard typing)> i'm tired of thinking i'm the following: crazy, mean, hateful, a > loner, unable to socialize, unfit for marriage. its depressing. the > second i hear sounds i can feel my blood pressure/pulse rate/stress > level rise dramatically and i know this is having a profound effect > on my health. i've tried xanax and zoloft but to no avail, and i > can't be taking xanax around the clock for the rest of my life b/c i > sure don't want to add an addiction on right now. > > so hello- and i can honestly say on this Thanksgiving, i am > infinitely grateful that a group like this exists.> - (p.s.- please let me know if i am posting things in the wrong > place,

etc)>

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