Re: New to Group

[Guest guest]

Celine: Welcome to the group. I just wanted to tell

you that I'm a native Nebraskan, born and raised near

Alma, NE and then lived near Holdrege, Loomis, Axtell,

and last in Minden. In 1973, we moved to Kansas for

my husband's job, but we have bunches of relatives all

over NE and remain Big Red fans.

I am sorry for your reason to be here. My husband

developed short-term memory loss in 1999 at age 69.

He was dx'd as AD and began Aricept, which held him

pretty good until 2003 or so. He finally had to quit

working in 2004, and that fall I also had to quit

working because I could no longer leave him alone. It

is a terrible job, full-time caretaking, and it really

takes it out of the caretaker. I hope your father ill

be able to get some help. I am curious who the

neurologist was that dx'd your mother. Was she from

Hastings? You were fortunate to find one who knew

anything about it, as so many don't.

Most of the symptoms you are describing are typical;

frequent UTIs, paranoia, depression, sleeping too much

or too little, not wanting to take showers and do

other personal care.

You will get lots of info from the group, so be sure

you write in all your questions and her progress.

Just about anything you need to know, you will be able

to find someone who knows something about it.

--- celine stahlnecker wrote:

> Hi Everyone!

> My name is Celine and I just subscribed to this

> group. I live in Grand Island NE. A city of about

> 42,000 right smack in the middle of the US.My mom

> Margaret is 77 and was disagnosed with Alzheimers a

> little over 2 years ago. She lives at home with my

> dad Bernard who is legally blind. We have been able

> to keep her at home because my dad is so dedicated

> to her and my family and I take turns going over

> every day to give him a break in the evenings. We

> tried having someone come in a few hours to give him

> a break but she was adamant about anyone coming in.

> We have taken her to a neurologist about 30 minutes

> from here and she diagnosed my mom with Diffuse

> Lewey Body Disease. I am 41, single, a librarian

> and I have a brother and sister that live closeby.

>

> We are barely hanging on with several issues looming

> over our heads. My mom is taking Seroquel and

> Namenda, one mild antidepressant,and a few other

> things for heart and acid reflux.

>

> Current issues:

> We can't get her to shower very often.

> Can't get her to the doctor she gets hysterical

> won't take meds.

> Very jealous....thinks her own kids are the object

> of my dad's attention.

> Hallucinates (sees things, has wild dreams

> sometimes...tried to hit my dad with a heavy metal

> cross)

> Nags often and belittles my dad.

> Has bladder infections quite a bit and those really

> make her crazy.

> Has serious depression where she talks about dying,

> running away...has a crazy look in her eyes.

> Sleeps until 12 or 1 each day. Goes to sleep about

> 11;30. Once in a while will stay up all night.

>

> We are looking for a support group or a way to get

> her to accept someone coming in to help my dad. Do

> most of you have your loved ones at home. Boy I have

> a lot to learn about this disease. I know the

> doctors here don't have a clue about this disease.

> Sad.

>

> If you know of any resources, or ANY help it would

> be sooo greatly appreciated. I feel for all of you

> that are dealing with this sad, disease.

>

> God Bless!

> Celine in Grand Island NE

> spikergirl39@...

>

>

>

>

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[Guest guest]

Hi Debbie. Welcome to the group. It's great when you are not alone any more!

>

> Hello, my name is Debbie and I am new to this group.

[Guest guest]

Hi Debbie

I want you to know that just like you, one of my triggers is the spoken letter

'S " . For me it's only when I hear it from a female voice. To say that this

sound drives me crazy would be the biggest understatement of this, or any other

century.

Anyway, welcome to the group. I'm glad you found us.

Regards

Elaine

>

> Hello, my name is Debbie and I am new to this group. I am 34 years old and

have been dealing with 4S/Misophonia since I was about 7 years old. My triggers

started with my father and his breathing & eating and has grown over the years

to many many people. These days my biggest triggers are breathing, people

speaking " S " sound, noises from another room (TV, radio, etc), gum chewing (more

of the cracking/poping noise) and many many more. Until recently I really

believed I was along and that I was just a jerk. It amazes me that there are so

many other people out there just like me and that this is really a true diorder.

I have alway been against going to a professional for help because it scares me

and I know I will cry (I hate crying in front of people especially strangers).

My family has talked about how I should go to a hypnotist to see if that would

work. I think they just don't take me seriously. Has anyone ever tried?

>

> Thank you all for reading and accepting me into your group. I look forward to

reading all of the tips and stories from everyone. I see that there are many

posts and theories that there is no cure...I refuse to believe this just yet. I

am now more than ever determinded to try and find it.

>

> Good luck to all of you

>

> Debbie

>

[Guest guest]

HI Elaine,

You are a classic 4S'er. I started at about 7. I'm will be 60 in a few months. That's a lot of years of suffering, and has been a heavy cross to bear for me. Hopefully there will be a cure for you.

We all seem to be just a baffled about the underlying causes of this condition. No lack of theories and opinions here.

Welcome to the club.... I am not quite sure how I mean that.

Mike

To: Soundsensitivity Sent: Saturday, August 13, 2011 7:30 AMSubject: Re: New to group

Hi DebbieI want you to know that just like you, one of my triggers is the spoken letter 'S". For me it's only when I hear it from a female voice. To say that this sound drives me crazy would be the biggest understatement of this, or any other century.Anyway, welcome to the group. I'm glad you found us.RegardsElaine>> Hello, my name is Debbie and I am new to this group. I am 34 years old and have been dealing with 4S/Misophonia since I was about 7 years old. My triggers started with my father and his breathing & eating and has grown over the years to many many people. These days my biggest triggers are breathing, people speaking "S" sound, noises from another room (TV, radio, etc), gum

chewing (more of the cracking/poping noise) and many many more. Until recently I really believed I was along and that I was just a jerk. It amazes me that there are so many other people out there just like me and that this is really a true diorder. I have alway been against going to a professional for help because it scares me and I know I will cry (I hate crying in front of people especially strangers). My family has talked about how I should go to a hypnotist to see if that would work. I think they just don't take me seriously. Has anyone ever tried?> > Thank you all for reading and accepting me into your group. I look forward to reading all of the tips and stories from everyone. I see that there are many posts and theories that there is no cure...I refuse to believe this just yet. I am now more than ever determinded to try and find it.> > Good luck to all of you > >

Debbie>

[Guest guest]

Hi Debbie,

My name is Joanne from the UK, I haven't checked in to the group for quite a while. I was concerned that I was picking up on other peoples triggers. Your description of your misophonia mirrors my experiences of it. So you are not alone and I know how hard it is and has been.

I am 43yrs now and my problems began when I was around 11 yrs.

I only recently divulged the term misophonia to my parents. (This site was a revelation to me). It has given me a certain amount of relief to know that they know I am not a bad person for never wanting to eat with them all those years ago, and for never wanting to be near my Dad because of the heavy breathing. It is something that I have been struggling to manage on my own for all this time.

My Dad especially was very hard on me when I was young. I remember being kicked up the stairs and being sworn at for being moody at the dinner table. It was absolute torture for me.

I tried screwing bits of tissue paper up and popping them in my ears to help block out the sound. I don't blame him for feeling this way as it must have been hell for them too.

Like you I have not plucked up courage enough as yet to speak to my GP about misophonia. I live in the fear that when I do I won't be taken seriously because the medical profession are not fully aware of this condition and there is no cure at the moment anyway.

Over the years I have however developed more visual triggers as well as auditory ones.

Coping with my own children is currently a bit of a battle especially as they are at home on their summer vacation. I can recognise however when I am starting to get uptight and try and divert my attention away. A bit of gardening is quite therapeutic.

At meal times I put the fan on in the Cooker Hood which makes a gentle sound which masks some of the trigger noises. I have made myself sit at the dinner table as I think it is important to set a good example for the children. It was hard at first but now it is a lot easier.

I have noticed that the children are a great distraction for me at family meals together. It really helps me to tune out of the focussing on a trigger noise. Eating in public places are much better for me because I have learned to look around the room and take interest in the other sounds going on which helps me to move my focus away from the trigger noises at the table.

At night I use ear-plugs because I can't get to sleep for the snoring. More often than not I remove myself from the room because I get very anxious about not being able to get to sleep because I can still hear it.

I hope we find some answers about this condition in the not too distant future. Try to stay positive and enjoy the good parts of the day and hopefully it will over-ride the negative parts.

Kind Regards

Joanne

To: Soundsensitivity@yahoogroup s.comSent: Sat, 13 August, 2011 3:54:03Subject: New to group

Hello, my name is Debbie and I am new to this group. I am 34 years old and have been dealing with 4S/Misophonia since I was about 7 years old. My triggers started with my father and his breathing & eating and has grown over the years to many many people. These days my biggest triggers are breathing, people speaking "S" sound, noises from another room (TV, radio, etc), gum chewing (more of the cracking/poping noise) and many many more. Until recently I really believed I was along and that I was just a jerk. It amazes me that there are so many other people out there just like me and that this is really a true diorder. I have alway been against going to a professional for help because it scares me and I know I will cry (I hate crying in front of people especially strangers). My family has talked about how I should go to a hypnotist to see if that would work. I think they just don't take me seriously. Has anyone ever tried?Thank you all for

reading and accepting me into your group. I look forward to reading all of the tips and stories from everyone. I see that there are many posts and theories that there is no cure...I refuse to believe this just yet. I am now more than ever determinded to try and find it.Good luck to all of you :)Debbie