RE: (unknown)

[Guest guest]

MaiLiis wrote: I, for one, have been struggling with what I think is

fall-out from

9/11. Hurt my back because I was careless when lifting a heavy potted

plant, and oh, so depressed. Husband, either due to fluctuations of LBD or

fall-out from my mood, is much worse. He's like a psychic vampire,

following me everywhere, feeding on what's going on with me. I know this

sounds a bit dramatic, but that's how it feels to me!

I too have been in a sort of state of numbness after 9/11. Not only for

what happened here in NY but for what happened here in our group. I felt,

rightly or wrongly, less secure about what I could express and I thank you

Mai Liis for bringing this up and for saying what you feel. It's a reminder

to me that that is what this group is here for.

I went downtown to see the WTC last Sunday. There were crowds of people and

you had to stand about 3 blocks away. Even from there the rubble rose

several stories into the air, topped by those big pieces of the facade that

you always see on the news . Everyone was silent and just took their time,

looked, and made room for the next people. I came home covered with fine

dust: the WTC and all those souls.

On a more positive note, a young cousin came from Spain to visit us.

Getting here, as you can imagine was not easy but it was nice to show him

NY for a few days.

My husband has remained about the same through all this. He did have one

incident which was kind of funny: He was moaning and moving in his sleep

and I, as I usually do, shook him gently and asked what was going on. He

said, " I've been chosen to give a talk. A talk about Margarent Short "

I asked him, " What's it about? "

And he answered, " Need I say more? "

Get it folks? Short and need I say more? That's pretty good for someone in

their sleep! Imelda

[Guest guest]

Hi everyone

I'm new to the group - I live in England - my father has LBD. He's often very

confused, hallucinating, he thinks he's in some kind of institution and my

mum is keeping him captive, she finds it very distressing. He has a heavy

tremor and finds it difficult getting in and out of chairs etc - otherwise

his motor skills are OK. He has been on a trial of Aricept for 2 weeks now -

it's not yet prescribed in all areas here. It's hard to tell whether it's

helping or not. The main problem is sleeping. My Mum is awake most of the

night. He gets up, and wants help dressing, saya he is going out etc etc then

wanders - she is frightened he will go outside and wander off.

My Mum is really frightened what will happen in the future and how quickly -

no-one seems able to tell her much. I would be so glad if someone could help

on this - we both know it isn't going to be good news but want to be

prepared, and adapt the house if necessary etc (and ourselves) - she is the

one who would benefit most from the group but does not use internet - she's

in her late 70S and thinks its too late to learn!

Any responses welcome

Suzi Iyadurai

[Guest guest]

Any responses welcome

Tell your mom, I am 69 and the internet has been my lifesaver. All she needs to know is to type and push buttons.

[Guest guest]

neurologist every two months

lucky you..a wait of less than 3-4 months between appointments is unheard of here. I have started faxing my questions so at least I have copies of my worries

[Guest guest]

--Hi Suzi,

I'm from Iowa, USA. My husband has LBD diagnosed a year ago and I was in the

same place as your mom. My husband was up/down all night, out the doors,

wanting to call the fire dept and/or police etc. It took us about 3 months to

get something similar to control of the behaviors. We started with Exelon and

added a small dose of seroquel later - we eventually got a sleep schedule, which

helped me a lot. You may get this from the Aricept but it will take time.

My husband now also reverts to these behaviors if he takes any sort of pain med

- don't know if this is LBD or med related (my husband also takes several heart

meds). It's a trade off of hard decisions that have to be made - he is somewhat

uncomfortable because of the pain in his back and legs but I can't keep him safe

if he's going out doors, up/down stairs etc because of the effects of the pain

meds.

You will find we all have different experiences with the meds and LBD involves a

lot of trial/error and adjustments. For myself (as much as for my husband) I

put him on a monthly schedule with his Internal Med doctor and he sees the

neurologist every two months. My sister-in-law is surprized that I'm that

aggressive with the doctors but it allows me access to manage the heart meds

with the LBD meds very closely. And if I need help, I will get it in less than

one or two months time. (LBD is NOT an 8 week waiting for an appointment

project).

Go to www.braintalk.org to read the LBD forum and Useful Websites. Tell you mom

that learning to get online would very easy, compared to the journey she is

about to experience. It will challenge all her patience and creativity to deal

with situations that none of us ever contemplated. Take the print outs from

posts that you think will help her - she is not alone. -lula

[Guest guest]

I don't think anyone was more afraid of the net than I am. My kids just

got me Web tv as a gift and sat with me to get me going. It sure didn't

take me long. I have used it for three years and couldn't live without

it now. I learn something all the time. Your Mom is older than I am

but she can't be more afraid than I was. And Web tv is just so easy.

Donna

How long a minute is depends on what side of the bathroom door you are

on.

[Guest guest]

Thanks so much for your replies, and I will try to get my mum onto the

internet!!!

Suzi

[Guest guest]

Hi and Welcome, Suzi.

I'm sorry to read of your dad's diagnosis, but glad you found this site. It is very, very helpful. Hopefully your mum will be convinced to try the computer.

My husband also has trouble sleeping most nights. As someone else said, I have trained myself not to get up every time I hear him wandering about, although I do get very annoyed when he turns the bright overhead light on when I'm asleep! I sleep several hours later in the AM than I would like, but must to be rested.

The outside doors on our house are deadbolted with a key, so I confiscate his keys at night and rest better knowing he can't get out. I started this last year after a very frightening episode when he went outside and injured himself while I was asleep. Your mum might consider having this done on their home.

As for the Aricept, it takes about 3 months to take full effect. Neurologist #2 doubled my husband's initial dose after only two months, sending him into a terrible state, whereupon the diagnosing neurologist went into a full tizzy at the stupidity. I moved him back to only 5mg and he was fine. Two and half years later we had to increase the dose (he now takes 5mg in AM and another 5mg in PM) and it took 3 months again to kick in. So don't be discouraged - it will take time and well worth it if it helps.

Again, welcome, and I look forward to hearing more from you.

Cheryl

[Guest guest]

Kirsty

Welcome to the group. I can understand your fear. If you are having severe

panic attacks, please get treated for them. For your asthma, there are a

number of effective treatments, which may help you cope with it, and help

return you to a more normal life.

Have you been tested for allergies? Many asthmatics have more trouble when

their seasonal allergies are active. Also a number of us have specific

triggers, like perfume, cigarette smoke, etc which can cause an attack.

We're glad you found us, and hope we can help.

Will Sawtelle c);-}>

wsawtell@...

(unknown)

Hi, my name is Kirsty and I am 22 years old.

I was diagnosed with Asthma when I was 18 month's old and have

been

in and out of hospital ever since but like alot or children never

really took it seriously.

That was until 2 years ago, I was walking into work one morning when

i had a very serious asthma attack, I was admitted Into hospital were

my condition got worse and i was taken into intensive care, which

gave me the shock of my life.

Now there is not a day that goes by that I don't worry about my

asthma, I'm now at the point were I have a panic attack every

time I

have a slight wheeze in my chest or a cold. It has now taken over my

life, I went from being a happy go luck girl with bag's of

enthusiasm

and energy, to someone that avoid's going any were or doing anything

in fear of triggering an asthma attack off.

I have lots of family that love me and a fantastic boyfriend but none

of them know how terrified i am.

I will enjoy being apart of this mailing list and hope it will help

me become more in control of it.

Take care Kirsty

[Guest guest]

Hi Kristy,

I had to laugh a little when I read your letter. You sound just like me

several years ago. I would always put on a smile and even learned how to

breath so no one noticed I was actually having a breathing problem. I

never wanted anyone to worry about me. Nothing wrong with that, its just

that it is so much easier not pretending . When I am scared , I tell

someone now. Also the older I get the more I notice that when the

breathing starts to go downhill for whatever reason, it goes downhill so

fast and sometimes out of the blue. Your best bet would be as someone

mentioned , getting allergy testing done. That way you know what to

avoid. I still go out and go shopping, but you wont find me in one of

those card shops with all the potpouri and smelly stuff in there. Last

time I did that I ended up in the er. I hope our group will be a big

help to you.

Hugs and Blessings,

Anneliese

[Guest guest]

Hi Kirsty,

I suffered from panic attacks from the age of 15, they cleared up eventually

not due to the help of my GP though. As I said They cleared up until I got

asthma. I was only diagnosed when I had a severe asthma attack and was

rushed into hospital. After that I was afraid to do anything on my own and

with out an inhaler, it was so bad that I wouldn't go from one room to

another unless I had an inhaler with me.

Then the minute I started wheezing, or getting even slightly breathless,

BANG I'd be having a panic attack again which in turn made the situation

worse which made me panic more etc.

Slowly I learned to realise that as long as I took my inhaler and took as

best as I could slow deep breathes that I would usually be ok. I still have

panic attacks and I still have bad asthma attacks, but I have gradually

learned to control both.

>

>Reply-To: asthma

>To: asthma

>Subject: (unknown)

>Date: Sun, 30 Dec 2001 18:20:54 -0000

>

>Hello everyone,

>

>I hope you all have a fantastic Christmas, thank you to all those

>people that responded to my e-mail it was very kind of you.

>

>In answer to some of your comments and questions, I had an allergy

>test done about a year ago and found out I have a reaction to

>Cat's,

>long grass and dust, I had tree cat's up to that point but all of

>them have been re homed together.

>

>I also went to my doctor about one year ago regarding my panic

>attack's and his response was very negative. So I did everything

>I

>could to find out as much information about panic attack's and

>have

>learnt a lot and have made a few new friends along the way that have

>had similar experience.

>

>I have now set up my own mailing list for people that suffer from

>panic attack's so I can give them the information that I

>didn't get

>from my GP.

>

>I still worry about my Asthma but I think everyone worry's about

>his

>or her health to a degree.

>

>I hope you all have a good New Year.

>

>Take care, Kirsty

>

>

Smiling is infectious,

You catch it like the flu,

When someone smiled at me today

I started smiling too,

I went around the corner,

And someone saw my grin

And when he smiled I realised

I'd passed it on to him!

_________________________________________________________________

MSN Photos is the easiest way to share and print your photos:

http://photos.msn.com/support/worldwide.aspx

[Guest guest]

My brother-in-law has made a couple of trips to ER as a result of asthma

attacks feeding on panic attacks feeding on asthma attacks. Now, He is being

medically treated for both.

Kirsty, there are treatments for panic attacks. If your GP isn't helping you

need to find a new one who will.

Will Sawtelle c);-}>

wsawtell@...

(unknown)

>Date: Sun, 30 Dec 2001 18:20:54 -0000

>

>Hello everyone,

>

>I hope you all have a fantastic Christmas, thank you to all those

>people that responded to my e-mail it was very kind of you.

>

>In answer to some of your comments and questions, I had an allergy

>test done about a year ago and found out I have a reaction to

>Cat's,

>long grass and dust, I had tree cat's up to that point but all of

>them have been re homed together.

>

>I also went to my doctor about one year ago regarding my panic

>attack's and his response was very negative. So I did everything

>I

>could to find out as much information about panic attack's and

>have

>learnt a lot and have made a few new friends along the way that have

>had similar experience.

>

>I have now set up my own mailing list for people that suffer from

>panic attack's so I can give them the information that I

>didn't get

>from my GP.

>

>I still worry about my Asthma but I think everyone worry's about

>his

>or her health to a degree.

>

>I hope you all have a good New Year.

>

>Take care, Kirsty

>

>

Smiling is infectious,

You catch it like the flu,

When someone smiled at me today

I started smiling too,

I went around the corner,

And someone saw my grin

And when he smiled I realised

I'd passed it on to him!

_________________________________________________________________

MSN Photos is the easiest way to share and print your photos:

http://photos.msn.com/support/worldwide.aspx

[Guest guest]

Imelda,

Thanks for the interesting article about mental stimulation and reduced chance

of Alzheimer's. It sounds so good, but I wonder just how accurate it really is.

I would think that being President of the US would be about as mentally

stimulating as it gets, but it didn't keep Reagan from getting Alzheimer's. My

husband ran a company until after he first started showing signs of dementia,

but it didn't stop him from getting LBD. I would love to believe that my

working logic problems for fun would keep me from getting Alzheimer's or LBD or

any other kind of dementia. No matter how I look at it, it just doesn't seem

fair that our loved ones have this disease. I guess an article on keeping

mentally active to ward off dementia isn't really a bad thing. I think it

bothers me because it seems to imply that the reason our loved ones have LBD is

somehow their fault - something they could have avoided by behaving differently.

was always very active mentally, and very intelligent. The one thing he

never did, though, was to drink. But, his sister never drank either, and she's

5 years older and has no signs of dementia. Go figure....

[Guest guest]

--I " m with you. My mother was a school teacher until she was in

her late sixties and she used to love to read. She was extremely

active and took care of many family members in their old age. She

loved to watch programs like Wall Street Week even though she never

had the courage to jump into stock investments, and she helped

friends understand how to budget and save for their old age without

any formal financial training. However she didn't drink and her live

involved a lot of stress due to other people's illnesses.

She was always a daydreamer and escaped into her imagination when

life was not all that pleasant in reality--and sometimes when there

was nothing wrong with reality too. Maybe that habit of daydreaming

has something to do with having delusions now. But her delusions are

more often nightmareish than pleasant escapes so maybe there's no

connection at all.

> Imelda,

> Thanks for the interesting article about mental stimulation and

reduced chance of Alzheimer's. It sounds so good, but I wonder just

how accurate it really is. I would think that being President of the

US would be about as mentally stimulating as it gets, but it didn't

keep Reagan from getting Alzheimer's. My husband ran a company until

after he first started showing signs of dementia, but it didn't stop

him from getting LBD. I would love to believe that my working logic

problems for fun would keep me from getting Alzheimer's or LBD or any

other kind of dementia. No matter how I look at it, it just doesn't

seem fair that our loved ones have this disease. I guess an article

on keeping mentally active to ward off dementia isn't really a bad

thing. I think it bothers me because it seems to imply that the

reason our loved ones have LBD is somehow their fault - something

they could have avoided by behaving differently. was always

very active mentally, and very intelligent. The one thing he never

did, though, was to drink. But, his sister never drank either, and

she's 5 years older and has no signs of dementia. Go figure....

>

>

>

>

[Guest guest]

In a message dated 4/13/02 11:00:24 PM Central Daylight Time,

mido101@... writes:

> And no one will still talk to me about LBD!!!! When ever anyone discuss her

> problems, they talk about Alzheimers.

I have this frustration, too, Donna, although it isn't for me personally. It

is that so many of the doctors in this area tend to make Alzheimer's the

umbrella, instead of dementia, under which it and LBD and many others fall.

It's as if they think that that is all the public knows and they are being

cool to perpetuate the ignorance. So sorry you can't get anyone to talk LBD

with you. Maybe it is that they feel lacking in knowledge enough that

they're afraid of looking dumb? Guess that's why we have eachother here, and

the warmth of Eve F's poem. THANK YOU, Eve! Cheryl

[Guest guest]

Arlethea,

I just had to take it a day at a time. No one knows for sure who, what

or when. I didn't think it would be 3 1/2 years later and my now 88

year old Mom would still be going strong. And at the time she was dx

Alzheimers, not LBD. I just knew she didn't seem to have what a lot of

others had and she seemed to be different in her progression.

And no one will still talk to me about LBD!!!! When ever anyone discuss

her problems, they talk about Alzheimers.

Work with what you have today. It is all we have.

Donna

A balanced diet is a cookie in each hand. Courtsey of The-Mouth.com

[Guest guest]

To anyone with medication answers-

Three days ago dads nh called, left a message saying the dr (over the

nh) had stopped dads Celebrex due to Medicare not paying for it. There

was a new order for Relafen. This is a type of anti-inflamatory med.

used to treat arthritis. I have researched it on the internet, and

there seems to be some ugly side effects. Also, since dad has started

this, he has become a little more defiant, sleeps more, and is easily

agitated. Please let me know if anyone is familiar to this med.

Thanking you in advance............confused and stressed!!

Sandie

Des Moines, IA

[Guest guest]

Thank you Donna. My husband is 53,and at first he was a real mess.But his

Dr.found nothing .But he knew Ronnie was not well.So he sent us to Indianapolis

to I.U.Medical Center.And the new doctor tested Ronnie until she found out.She

tried diffrent meds.And now Ronnie has some good days and of course he has the

bad ones too. They come more now than before. But I'm glad I found this group of

people that knows.Arletha

mido101@... wrote: Arlethea,

I just had to take it a day at a time. No one knows for sure who, what

or when. I didn't think it would be 3 1/2 years later and my now 88

year old Mom would still be going strong. And at the time she was dx

Alzheimers, not LBD. I just knew she didn't seem to have what a lot of

others had and she seemed to be different in her progression.

And no one will still talk to me about LBD!!!! When ever anyone discuss

her problems, they talk about Alzheimers.

Work with what you have today. It is all we have.

Donna

A balanced diet is a cookie in each hand. Courtsey of The-Mouth.com

[Guest guest]

Arletha

I wish I could give you a planned map of upcoming events concerning LBD.

Unfortunately, the only advice I can give is expect the unexpected.

This is known as the hour by hour disease, of which I have re-termed it

as the minute by minute disease. My dad can change from one minute to

the next. Through this I do suggest you take time for yourself and take

good care of yourself. You will need to be as physically and mentally

well as possible to face the future. Keep writing to this group and

keep asking questions.

Sandie

Des Moines, IA

[Guest guest]

Arlethea,

I think there is some advantage to working with your husband at his age.

They still want to treat him. At my Mom's age, they really all give up.

She seems fairly healthy and while there is a lot she can't do, the

neurologist called her " really demented. " Yet I still communicate with

her. But maybe that is me making the adjustments. She runs all over

the nh in her wheel chair. And she will go to the toilet if they {I}

put her on. She stay dry until I get there. How demented is that?!!!

And the thing that has carried me through has been groups like this. We

all know and understand, because we are all in similar boats.

Donna

A balanced diet is a cookie in each hand. Courtsey of The-Mouth.com

[Guest guest]

In a message dated 4/23/02 11:14:39 PM Central Daylight Time,

shirley0914@... writes:

> She couldn't eat but one bite. Looks like I will have to keep closer tabs on

> her. Hope this is just a fluctuation and she will get a little better soon.

> She kept falling asleep off and on.

Shirley, sorry to see this. Yes, it is a nasty indication of disease

progression.. Bob is occasionally able to bring his beverages to mouth, and

there are times I have to direct the straw for him. Sorry, isn't it? Cheryl

[Guest guest]

Shirley

Does your dad have a visiting nurse or social worker come to the house

to help him? He must be exhausted! Maybe it is time to check into some

sort of help in the home. Good luck, and thank you for sharing your

stories.

Sandie

Des Moines, IA

[Guest guest]

Thank you PJ! I am going to start looking for this book. Lately everything

that gets posted by Louise L. Hay has been helpful and timely. (I know, I

have probably said it before!)

Peace and Light to all!

Andie : )

Tilley, Wife to

Work at Home/Homeschooling Mom to a(10), (6) and (3)

(unknown)

Affirmations Friends:

I've been sitting here contemplating where to begin for the

message tonight after all the stress the group has been through

lately. I stumbled across a new book (a couple of months old) that I

haven't had a chance to read yet, maybe because it is more of a

workbook than a regular book. And, as I love to read, I am more

hesitant to actually do a workbook (even if it would help me)! But,

I've been sitting here for over 30 minutes looking through this book,

and I have to tell you it is excellent! And, it has helped me to

center myself and get focused again. I don't mind sharing bits and

pieces of it with you, but in all fairness to Louise Hay, it is a

brand new book. And, even though I will give her credit, and the

copyright info, I don't think it is right to share much of it with

you since it is so new. But, I encourage you to get her first book

called, " You Can Heal Your Life " , and this new book called, " You Can

Heal Your Life: Companion Book " by Louise L. Hay. There is so much

practicality and wisdom in these pages. They have the power and

strength to totally calm me down when I'm feeling frazzled,

exhausted, and very stressed out! So needless to say, I highly

recommend them. You can use the link (to the left) to order it

through HayHouse Publishing through the internet or use it to order

it by phone, or to get the address to write for it. Of course, it is

in the bookstores also, but sometimes you have to look for them, as

they are popular, and sell quickly. Well, anyway I've now rattled on

awhile not saying too much. So I will close now and let my next

message be some quotes from that wonderful book. {I assure you that

I get nothing by giving Ms. Hay free advertising, but the knowledge

that maybe I've helped someone else, just like I needed the help so

many years ago}. Anyway, I'm glad that our group is a little more

peaceful tonight. And, I wish all of you a wonderful night and a

great tomorrow. Love & Peace, a (pj)

[Guest guest]

Andie & Group,

I know I must sound like a walking billboard, however, you

just can't imagine all the improvements and blessings that have come

to myself and my family through reading Louise Hay books, listening

to Louise Hay tapes, and practicing affirmations and her positive way

of thinking!! I've already shared a couple of stories with you guys

about how it has helped, but as time goes on, maybe I'll get braver

and be able to tell you more.

And especially for those of us who may not have come from

the most functional, or wonderful, or loving of families as

children,...Louise Hay stuff REALLY HELPS then!! I love my parents

and my extended family, but,...we aren't exactly on speaking terms

right now,...and after everything I could do to help, and I mean

EVERYTHING I tried to do to patch things up, etc. It still is that

way. Because even though I can change my perception, and my

thinking,...I CANNOT change the perceptions of my parents. Yes, I

love my parents, but I have had to move on. I have to be healthy,

physically, emotionally, and spiritually -- and that meant having to

sever a close relationship with my family and its past. It is an

extremely long story, and not too understandable. But, let's just

say that: Louise Hay and her teachings came a real long way to

healing many years of pain and abuse in my life. That is why I'm so

eager to share with others. I no longer hold resentments, or hate or

anger, but no longer want to be a victim either. I am me. " I love

and approve of myself. " Okay, I've talked too much, your guys

turn!! And for those who haven't shared a little of who you are and

haven't introduced yourself to the group, please feel free to do so.

Also, let me know when your birthdays are, if you haven't already.

I'm gonna go work on the birthday calendar now. Love, a (pj)

> Thank you PJ! I am going to start looking for this book. Lately

everything

> that gets posted by Louise L. Hay has been helpful and timely. (I

know, I

> have probably said it before!)

>

> Peace and Light to all!

> Andie : )

> Tilley, Wife to

> Work at Home/Homeschooling Mom to a(10), (6) and (3)

>

>

>

>

> (unknown)

>

>

> Affirmations Friends:

>

> I've been sitting here contemplating where to begin for the

> message tonight after all the stress the group has been through

> lately. I stumbled across a new book (a couple of months old) that

I

> haven't had a chance to read yet, maybe because it is more of a

> workbook than a regular book. And, as I love to read, I am more

> hesitant to actually do a workbook (even if it would help me)! But,

> I've been sitting here for over 30 minutes looking through this

book,

> and I have to tell you it is excellent! And, it has helped me to

> center myself and get focused again. I don't mind sharing bits and

> pieces of it with you, but in all fairness to Louise Hay, it is a

> brand new book. And, even though I will give her credit, and the

> copyright info, I don't think it is right to share much of it with

> you since it is so new. But, I encourage you to get her first book

> called, " You Can Heal Your Life " , and this new book called, " You Can

> Heal Your Life: Companion Book " by Louise L. Hay. There is so much

> practicality and wisdom in these pages. They have the power and

> strength to totally calm me down when I'm feeling frazzled,

> exhausted, and very stressed out! So needless to say, I highly

> recommend them. You can use the link (to the left) to order it

> through HayHouse Publishing through the internet or use it to order

> it by phone, or to get the address to write for it. Of course, it

is

> in the bookstores also, but sometimes you have to look for them, as

> they are popular, and sell quickly. Well, anyway I've now rattled

on

> awhile not saying too much. So I will close now and let my next

> message be some quotes from that wonderful book. {I assure you that

> I get nothing by giving Ms. Hay free advertising, but the knowledge

> that maybe I've helped someone else, just like I needed the help so

> many years ago}. Anyway, I'm glad that our group is a little more

> peaceful tonight. And, I wish all of you a wonderful night and a

> great tomorrow. Love & Peace, a (pj)

>

>

>

[Guest guest]

yes, you can open the caps and put the powder in his food.Mina Moori wrote: Hello ,I have tried to email you, but I've got no response.I am giving ultraflora /good bacteria to my son. He does not swallow capsuls, so I open the capsul and hide the powder in his food. I don't know if this is the right way of giving him good bacteria. Could you please reply.Thanks ,Mina__________________________________________________________Windows Live

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