Re: hi everyone

[Guest guest]

Hi Sam,

Sorry to hear that your mom is having such a hard

time. I have experienced the delusional behavior of my

husband thinking I am having an affair/affairs too.

Many of us experience this with our LO. It is part of

the LBD speaking. I have been going through this for

about 3 years now. I have managed to develop a hard

shell against it and don't take it as personally

anymore. I know it is the LBD speaking and not my

husband and I know that I have nothing to feel guilty

about when he accuses me of this, since I have done

nothing wrong to deserve these accusations. I am

accused of affairs with every male in the neighborhood

if I as much shout hello to them across the street.

When I do the grocery shopping, I leave him with a

caregiver and I am accused of going out to have an

affair and it goes on and on, so now I let it roll off

my back and go on with my duties. It is very hurtful,

but it's the LBD, not your dad. I hope that your mom

begins to see that she will have to take a break for

herself once in awhile or she will burn out and wear

down her resistance and then she will be of no help to

your dad. She may even end up in the hospital herself.

She must let go a little now and then for her own

health. I know it's easier said than done. Believe me

I had to work on it, but it is now easier for me to do

and I know that Jim is not going to suffer without me.

He usually forgets I'm even gone until I return and

then he says, " Where have you been, I was calling you "

Which he wasn't, because he had the caregiver here to

help him.

I resigned from work because of sleep deprivation. I

could no longer handle work and being up all hours of

the night and wee hours of the morning. I was sleeping

maybe only 1 to 2 hours before having to get up for

work. It is very hard with our LOs, because they have

no recognition of day and night.

Does your dad have a physical therapist or someone

that can work with him to keep his strength up to walk

if even a little. My husband is in an Adult Day

Program from 10:30 - 2:45 two days a week to keep him

stimulated physically and mentally. There is a

Physical Therapist that works with him there. He needs

assistance to walk with a walker, but he can still get

around with a little help. I use the wheelchair just

to get him around from the living room to the bathroom

on time during the day or to take him for walks, but I

try not to let him sit all day, because his legs will

atrophy from sitting long periods. There are exercises

they can do with their legs to keep their legs more

able to walk. Eventually, the disease takes it's

course and they can no longer walk, but it helps to

keep their legs going a little longer than they would

without the exercises.

It's good to hear from you Sam. Take care , I know

this disease is so hard on all families. Your family

is in my thoughts and prayers....Jan

--- ask ill tell wrote:

> Sorry to here about all of the deaths, I know its

> been awhile since i

> have been on here and for that i am sorry but as you

> all know life is

> hectiac with LBD and everyday life. just a little

> update on my Dad of

> course nothing is better he is tarting to see things

> again they

> increase med's and then decrease med's every time my

> mom is out of

> site he thinks she is fooling around on him and it

> is hard on her. The

> next day he knows he did or said something and

> apoligizies for

> anything he might of thought but we all know he

> dosent remember what

> it was. they are not sleeping well at night and it

> is taking its toll

> on my mom she needs to get away but wont leave she

> is hard headed but

> we still love her if things keep going the way they

> are now we belive

> he will be in a wheelchair within the year and that

> will be harder on

> them as they live in a 14 x 80 trailer. Well i will

> go for now and

> hope you all get much needed rest and support. You

> are all in my

> prayers and have our love and support......Sam

>

>

>

__________________________________________________

[Guest guest]

>

> One very strange aspect of my son's symptoms, which I used to

> experience as a child in reaction to my parents' sounds, is that he

> had an unwanted and distressing genital response when he is upset

> over the sounds, in other words he gets an erection but hates the

> feeling and becomes very distressed. I am very concerned about this

> as I don't want him to associate arousal with such negativity. I

> wonder if anyone else has experienced this?

Go to the files section, then go to the stories section and read the

one titled " hi " ... " another great story " posted on 1/23/08. I think

another of the stories discusses this. It's also been in another post.

He's not the only one.

[Guest guest]

Yes, I agree he's not the only one. I experienced involuntary sexual

arousal when I was irritated by sound as a child/teenager--not always,

but it was one of the more difficult things about this " disorder " that

I had to deal with. It's lessened quite a bit as I've gotten older.

I've been wondering a lot lately about the autism connection, and I've

been doing some reading on the topic. It fascinates me that 4s is so

similar to the noise sensitivity often seen in austistics. I highly

recommend the book " Too Loud Too Bright Too Fast Too Tight " by Sharon

Heller. It's about sensory defensiveness, and has some interesting

ideas about helping yourself (or your kids) feel better.

>

>

> >

> > One very strange aspect of my son's symptoms, which I used to

> > experience as a child in reaction to my parents' sounds, is that he

> > had an unwanted and distressing genital response when he is upset

> > over the sounds, in other words he gets an erection but hates the

> > feeling and becomes very distressed. I am very concerned about this

> > as I don't want him to associate arousal with such negativity. I

> > wonder if anyone else has experienced this?

>

> Go to the files section, then go to the stories section and read the

> one titled " hi " ... " another great story " posted on 1/23/08. I think

> another of the stories discusses this. It's also been in another post.

>

> He's not the only one.

>

[Guest guest]

Wow. I am so glad I mentioned the sexual arousal issue as it is incredibly validating to hear that others experience it too. Yes it is like the sound goes straight to that area, involuntarily. My symptoms in this respect have also lessened as I have grown older, but the terrible distress my seven year old son experiences has reminded me very vividly of my own as a child and as a teenager. I still get it sometimes, mostly in response to my parents, which is so upsetting, as it is purely physical and my mind and feelings are utterly repelled the thought of any sexual response to anything to do with them. I have lived with this for years but never dreamed others had this too. Thank you for sharing in this embarrassing aspect of 4S. Also, thank you for your suggestions about the reading - very helpful.

[Guest guest]

Wow. I feel like people are reading my mind. I was in a store tonight

and there was a gum chewer and I had the involuntary sexual arousal

(female), which also doesn't happen very often so I haven't really

thought it through. I stopped to think about it at the moment tonight

though and thought " I wonder if others experience this? " I then

proceeded to decide I would be too embarrassed to admit this on this

forum. Then I come home and check the forum and there it is. Thank

you for talking about it.

> >

> >

> > >

> > > One very strange aspect of my son's symptoms, which I used to

> > > experience as a child in reaction to my parents' sounds, is

that he

> > > had an unwanted and distressing genital response when he is

upset

> > > over the sounds, in other words he gets an erection but hates

the

> > > feeling and becomes very distressed. I am very concerned about

this

> > > as I don't want him to associate arousal with such negativity.

I

> > > wonder if anyone else has experienced this?

> >

> > Go to the files section, then go to the stories section and read

the

> > one titled " hi " ... " another great story " posted on 1/23/08. I

think

> > another of the stories discusses this. It's also been in another

post.

> >

> > He's not the only one.

> >

>

[Guest guest]

This is so weird - I get this too, but had never really thought of it as being

that, because clearly that makes no sense, right? And anyway, it's mild enough

that I hadn't thought about it very hard. But yes, I guess that's what it is.

It's like a kind of squirminess, like the sound is shooting right to that area

in a similar way to the way that blackboard sounds go right down your spine.

Wow, no wonder those sounds feel like an invasion.

kate

>

> Yes, I agree he's not the only one. I experienced involuntary

sexual

> arousal when I was irritated by sound as a child/teenager--not

always,

> but it was one of the more difficult things about this " disorder "

that

> I had to deal with. It's lessened quite a bit as I've gotten

older.

>

>

>

[Guest guest]

"It's like a kind of squirminess, like the sound is shooting right to that area in a similar way to the way that blackboard sounds go right down your spine." That's EXACTLY what it feels like for me too. Amazing--I really am constantly amazed that there are other people experiencing this stuff. When I was younger it was a stronger response, but it's now the "shooting" sensation that you described. There's certainly a physiological basis for that, wouldn't you think?

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[Guest guest]

i am very glad that you have raised this aspect and i think it should be a poll

question.

how do we go about arranging that?

i also suffer this and it was terrible to deal with when i was younger and still

is now. it is

intrusive and involuntary and not at all related to sexual desire.....although

it can lead to it

AND very embarrassing to talk about, even here.

i know that i seem a bit obsessed with the amygdala - and i admit that i don`t

know much

at all about physiology - even the basics, without getting into neuro -

matters.......but i

keep coming back to it and thinking is it related to ssss?

and guess what !

i have read that a damaged amygdala 'also can cause hypersexuality'

can i just say that i think that you are a wonderful mother.

thanks for sharing.

fiona

[Guest guest]

Thanks so much for setting up the poll on this issue - it will be really interesting to see the results.

This is a really intimate subject but it is so good to know my son and I are not the only ones - thank you to everyone who has shared their experiences in this respect. I have never mentioned it to anyone before, until very recently to the psychologist and my husband. But unless someone has experienced it it must sound very strange, so I'm grateful to have this forum!

[Guest guest]

Okay, I set up an anonymous poll. It's not something that's easy to

talk about, but I don't think anyone should feel embarrassed--it's

not like we've chosen to be this way, that's for sure. Any sort of

physical reaction could be a clue to what is happening to us.

>

> i am very glad that you have raised this aspect and i think it

should be a poll question.

> how do we go about arranging that?

>

> i also suffer this and it was terrible to deal with when i was

younger and still is now. it is

> intrusive and involuntary and not at all related to sexual

desire.....although it can lead to it

>

> AND very embarrassing to talk about, even here.

>

> i know that i seem a bit obsessed with the amygdala - and i admit

that i don`t know much

> at all about physiology - even the basics, without getting into

neuro - matters.......but i

> keep coming back to it and thinking is it related to ssss?

>

> and guess what !

>

> i have read that a damaged amygdala 'also can cause hypersexuality'

>

> can i just say that i think that you are a wonderful mother.

>

> thanks for sharing.

> fiona

>

[Guest guest]

I asked my daughter if she experiences any weird feelings "down there" when she hears an offensive noise, and she said yes--she feels a shooting sensation and kept thinking she was going to pee her pants. She says it's not as bad anymore. But there is definitely a clue in this physiological reaction.

-----Original Message-----From: Soundsensitivity [mailto:Soundsensitivity ]On Behalf Of smhardeSent: Saturday, March 15, 2008 12:11 PMTo: Soundsensitivity Subject: Re: hi everyone

Okay, I set up an anonymous poll. It's not something that's easy to talk about, but I don't think anyone should feel embarrassed--it's not like we've chosen to be this way, that's for sure. Any sort of physical reaction could be a clue to what is happening to us.>> i am very glad that you have raised this aspect and i think it should be a poll question. > how do we go about arranging that? > > i also suffer this and it was terrible to deal with when i was younger and still is now. it is > intrusive and involuntary and not at all related to sexual desire.....although it can lead to it> > AND very embarrassing to talk about, even here. > > i know that i seem a bit obsessed with the amygdala - and i admit that i don`t know much > at all about physiology - even the basics, without getting into neuro - matters.......but i > keep coming back to it and thinking is it related to ssss?> > and guess what !> > i have read that a damaged amygdala 'also can cause hypersexuality' > > can i just say that i think that you are a wonderful mother.> > thanks for sharing. > fiona>