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Nick,

Welcome to our family! I am SO happy to see you and Steve and other

younger members of the group taking charge of your health at a young

age (I know you probably hate to be called young, sorry). :) My only

regret since starting on this fitness journey 19 months ago was that

I waited until I was 31 before I finally woke up! Think about the

head start that you have, coming to your senses in your 20s!!

I can tell that you are really committed to your program, and we are

here to help you every step of the way, so PLEASE do not hesitate to

ask questions, or to vent to us if you run into any problems! We can

give you pats on the back, do the happy dance with you, or even give

you a *poke* or kick if needed. :)

Jen B.

C6W11D2

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Janie,

You are ahead of me on the grandkids. I only have 5...but 4 of

them live with us right now. And the other one lives nearby.

Chronic pain often times causes chronic fatigue. You and Ella

mentioned the fatigue. I find that when my pain is worst that I

experience overwhleming chronic fatigue. Controlling the pain is

essential for me to control the fatigue. Fatigue can also be the

result of sleep disturbances. These are questions only you and

your doctor can answer together.

Ray

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" Ray in Virginia " wrote:

>Janie,

>You are ahead of me on the grandkids.  I only have 5...but 4 of

>them live with us right now.  And the other one lives nearby.

My first is due any day now! Next step is to smack my son upside the head! I

told my kids years ago that the first one to make me a grandfather would earn

it! I've said for years that my age didn't bother me, (I'll be 45 in 16 days),

but the fact that any of my kids could make me a grandfather at anytime really

worried me. Seriously though, I wish he'd be able to convince her to marry him.

He wants to but she doesn't. He's 20 and she's almost 18.

One other good thing is that my youngest turns 18 in 87 more days. He's moving

out on his birthday. HOORAY!!!! Back to peace and quiet in the house.

Hugs to all.

Jami

__________________________________________________________________

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the convenience of buying online with Shop@Netscape!

http://shopnow.netscape.com/

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Hi Kiddo!

Glad you decided to quit " lurkin " and chat w/ the group. You are gonna love it

here. I am hoping we can hook up on Yahoo and chat sometime soon.

Warm fuzzy hugzzzzzzz,

Di

McKee wrote:

> Hello, my name is Janie,and I'm new at this.I also have chronic pain.Sometimes

the doctors acts like the pain is all in your head.I have days that I can't

hardly move,but I have to make myself get up .I have 5 grandkids and one on the

way.I'm 46 and some days I feel like 96.Also I'm Judy's sister-in-law.I'm

looking forward to talking to everyone.....Janie

>

>

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I'm still in serious

pain. My surgeon is re-evaluating me in a couple of

weeks (2 months post-surgery) to see if I've improved

any, which, unfortunately, I haven't.

Hi Judy,

Glad you found the group here.

I have couple herniated discs, many prematurely degenerated,

vertebra and curvature issues, I am just past 30. I haven't had any

surgery but have degeneration- I read that the decreased space puts

more of a load on the facet joints( I found out in Gray's anatomy)

and there is as a result increased pressure on the nerves. I was told

there is nothing surgically that can be done for me, surgery is

primarily done to alleviate the possibility of compromising function

but there is no guarantee of pain reduction or eradication.

I know there are many lucky people out there who have had surgery

and have so much less pain and it makes me want to run right out and

get it! But I have heard more often that it can actually get worse.I

will have to if I ever get numb all the time or have loss of bladder

function, etc. I have heard that even with 'successful' cases that

surgery can take a very very long time to heal, too. With

degeneration there is less chance of full 'recovery' Also, no two

people are alike,the way their nerves run exactly, even so two people

could have the same problem and one have more pain.

I'm glad you found this group, I hope you find support and

feel less alone because that you are not.

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if it helps with dealing with things, working

at overcoming the fear has to be worth the effort.

A,

I know I have to deal with my fear or it will destroy me. I was in counseling a

few years ago (when I had insurance) and the counselor said all she could see

when she looked at me was fear. I have since left my ex, so things are better,

but I still am afraid to post here, lest my nada, FOO or ex finds these posts

and reads them.

Hania (who will keep posting through her fear)

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Hi ,

Welcome to ModOasis (Moderated Oasis). I'm the moderator but I try to

hang loose and stay on the fringes because I don't know all the answers

and I haven't experienced all the experiences of those who post here. I

first learned about BPD seven years ago and have been helping Randi on

the NonBP Family of WelcomeToOz lists (she's the listowner) and at

Randi's BPD Central website ever since. I also post under the screen

name of . I completed my degrees in psychology

many years before BPD was recognized as a mental health " personality

disorder " diagnostic category.

BPD first appeared as a diagnostic category in the DSM, the

psychiatrist's bible, in 1980. The first book about BPD for the lay

public was Kreisman's " I Hate You - Don't Leave Me " . It was published in

1989. Randi wrote a 56-page booklet title " Walking On Eggshells " in

mid-1996 and " Stop Walking On Eggshells " was published by Harbinger's in

1998.

I'll send you (and any anyone else who wants it) a copy of the list

Guidelines. The Guidelines are posted to all the WelcomeToOz lists at

the beginning of each month. The Guidelines define how the lists

function and what is acceptable behavior by those who post to the

WelcomeToOz lists. Randi Kreger co-wrote one of the 'texts' for these

lists -- the book, " Stop Walking On Eggshells " . The other 'text' for the

posters on this list is Ann Lawson's book, " Understanding The

Borderline Mother " which was published in the year 2000.

The listmembers on this list send their posts to

ModOasis

Yahoogroups is our listserv and distributes a copy of each person's post

to all the active members on the list.

One can receive the posts " individually " , as they're sent to the

listserv, in packages of 25 ( " digest " form) throughout the day, or they

can set their account at the listserv to " NoMail " when they go on

vacation. One can set/re-set their preference at the listserv after

signing in at the listserv with one's Yahoo ID at:

http://www.yahoogroups.com/group/ModOasis

Or, one can <press> " Messages " on the left, after signing in at the

listserv, and read the posts in the archives. One can also read and post

to the list from there.

Also, the abbreviations used on these WelcomeToOz Family of NonBP lists

are in Section 8 of the Guidelines.

One copy of the Guidelines will soon be on their way to you.

Welcome aboard,

- Edith

One of the Moderators / WelcomeToOz Family of NonBP Email Support Groups

jkhtrip@... wrote:

>

> Hello Edith:

>

> I appreciate your reply to my mail. The person with BPD is my mother. My

> full sister and my half sister also have BPD. My half brother and I are very

> much effected by this. Of course, I am writing on my behalf and wanted to

> convey a complete picture of the family dynamic.

>

> By posting a question, could you please explain how I do this. I am not only

> new to this group, but to yahoo also. I am not sure how to start to approach

> this, but I am sure that I could use some form of support group. Possibly,

> you could send me on the right path.

>

> -

>

> In a message dated 1/7/2003 5:58:34 AM Eastern Standard Time,

> wondrrkid@... writes:

>

> > Hi ,

> >

> > No problem. We'll be glad to help if we can. Just post a question and

> > you're sure to get answers.

> > Is the person with BPD your mother or your father?

> >

> > - Edith

> > Moderator

> >

> > " K. Hall " wrote:

> > >

> > > Hello:

> > >

> > > My name is Jame sand I am a new member. I couold use any help

> > > getting to know how this works.

> > >

> > > I hope to make contact with individuals as soon as posssible.

> > >

> > >

> > .

> >

> > To get off the list, send a blank message to

> > ModOasis-unsubscribe . Send questions & amp; concerns to

> > ModOasis-owner . & quot;Stop Walking on Eggshells, & quot; a

> > primer for non-BPs can be ordered via 1-888-35-SHELL (). For

> > the table of contents, see http://www.BPDCentral.com

> >

> >

> >

> >

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OK , I just sent you a copy of the Guidelines.

In posting, there are a couple things to keep in mind that I forgot to

mention before. One is to use " I " statements, rather and " you " or " you

should (do whatever) " statements. KOs (Kids of BPs) have been told what

to do and what to think all our lives so we don't like to be told what

to do or think. Also, the " Do unto others ... " thing applies. Otherwise,

read the Guidelines and its " All systems GO! "

- Edith

jkhtrip@... wrote:

>

> Hello and thanks.

>

> Any hint as to how to approach this forum properly and not be out of bounds

> would always be appreciated.

>

> Do I just post questions to the group as a whole? Can I ask or tell how I

> feel? I am not only new to this group, but to yahoo as well.

>

> I have always wondered if there were others who went through what I did and

> still do. I hope I can learn to use this forum properly and not only

> benefit, but be of some help to others who I am sure suffer as I have and do.

>

> Much Thanks,

>

>

>

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Hi ,

Its a good idea to post one's thoughts (and responses) to the list. That

way everyone learns.

- Edith

jkhtrip@... wrote:

>

> Thanks Ilene:

>

> I am now enlightened about the phrase nada. It is so funny that it describes

> how I have always felt. I am 43 with a BPD mother age 75.

>

> I will post as soon as I learn what is appropriate and what is not. Is it OK

> to contact individuals directly in this group, or is that a no no in every

> case.

>

> Thanks much for your welcome and introduction.

>

>

>

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Welcome Malene-

I have found great support/education here- I'm sure you will too.

Take care,

Christy

New Member

Hey List,

Well, mostly I guess I will sit back and listen for a while. My mom

has borderline personality disorder, and right now, well the games

are overwhelming. I am hurt and angry as living hell. I havent heard

from her since we had a big fight on the phone where I held her

responsible for a whole bunch of lies she had told me.

Anyways, it is all quite hurtful these days, and I just dont know

what to do no more. I know if I cut contact with her then the suicide

threats etc, etc will go totally bananas. So far I have satisfied

myself with the very far physical distance there is between us, and

just handled her for visits and phone calls. But by now I am frankly

also so angry that I am about to the place where I dont care about

her suicide threats and bad health any more. She has done it to

herself with the last 20 years of heavy drinking.

Ahh well.. I will sit back and listen for a while. Maybe some other

folks here no the list have found ways of dealing that I have yet to

see.

Thanks,

Malene

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Thanks for that glossary, Edith, very helpful - I think you forgot

one, though:

Jaw-Dropping Revelation: " You mean there's a NAME for that???? " ;)

My own personal Jaw-Dropping Revelations:

BPD

Distortion Campaign

PAS (Parental Alienation Syndrome)

Projection

Splitting

I found out about BPD (wow, do they know my mom???) a week ago,

joined this list two days after that, and pretty much ever since then

I've been stunned at finding out that there are other people who have

been through some of the same stuff as I have. I have both of those

books on order, and as I doubt I'll ever go to a therapist (my BPD

mom used therapists - she'd find one, convince him/her that she was a

victim of an abusive family, and then troop us all in to be

confronted by him/her. While cerebrally I know that therapists can be

useful, at a deeper level I don't think I can ever go to one), this

list is pretty much my only support group. I'm glad I found it.

>

> > Hey List,

> >

> > Well, mostly I guess I will sit back and listen for a while. My

mom

> > has borderline personality disorder, and right now, well the games

> > are overwhelming. I am hurt and angry as living hell.

>

> The anger is good but the emotional hurt can be very painful.

>

> > I havent heard

> > from her since we had a big fight on the phone where I held her

> > responsible for a whole bunch of lies she had told me.

>

> Hmmm, OK. I'll run some stuff by you...

>

> BPs come in different flavors. Some are high-functioning, some are

> low-functioning. They're all spread out along a continuum between

the

> two extremes. And, they have an assortment of any five or more of

the 9

> diagnostic DSM criteria. BPs are mentally ill. They don't use real-

world

> logic. And, because we KOs (Kids Of BPs) have no background

in " normal " ,

> we have nothing normal to compare their behavior with. KOs are in an

> unchosen relationship with their nada/fada (BP mother or BP

father). In

> other words, we didn't ask for a parent with a mental disorder but

> that's what we got.

>

> To continue. BPs use rationalization (ie, they tell lies),

projection

> (they blame others), denial, and splitting as (unconscious) ego

defense

> mechanisms. The ego defenses are automatically triggered whenever a

BP

> is confronted. BPs have a very tiny and/or fragmented ego. And, when

> they're on the defensive (to protect their ego) the defense

mechanisms

> happen automatically -- and they don't operate based on real-world

> logic. BPs can also be manipulative, and they lack empathy, etc

etc. But

> the defense mechanisms " just happen " . Ofttimes the BP will say later

> that they don't remember what happened when chaos happened. This

can be

> true because some of them dissociate (for example, while raging).

>

> The lies are nada's (ego protective) rationalizations. And, when

> confronted, that must have brought out her denial, projection,

and/or

> splitting (into all good or all bad). This isn't the easiest stuff

in

> the world to learn about. I hope you have a copy of SWOE.

>

> > Anyways, it is all quite hurtful these days,

>

> Yes, but she's not necessarily using real-world logic and she may

not

> mean what she says. Plus, you've not yet learned to not take her

stuff

> personally. This is hard for KOs to understand because the KO's

pain is

> real and they believe their BP parent is being honest and truthful.

>

> > and I just dont know

> > what to do no more.

>

> But you ended up here and that's good.

>

> > I know if I cut contact with her then the suicide

> > threats etc, etc will go totally bananas.

>

> Yes, and that's an ace card that she holds. She planted that 'hook'

in

> you early in your life and she knows that she can control your

behavior

> (ie, she knows that you'll feel FOG (Fear, Obligation, and/or

Guilt))

> when she yanks on that hook. Nadas (BP mothers) lack empathy so they

> don't know how bad it hurts their KO when they do stuff like that.

They

> can read us (our reactions) like a book so the idea is to learn to

not

> react -- like it says in the post on Control Freaks that I posted

> earlier. If the KO doesn't show a reaction, then it takes the air

out of

> their nada's balloon. Plus there's lots other stuff we can share

with

> you.

>

> > So far I have satisfied

> > myself with the very far physical distance there is between us,

and

> > just handled her for visits and phone calls. But by now I am

frankly

> > also so angry that I am about to the place where I dont care about

> > her suicide threats and bad health any more. She has done it to

> > herself with the last 20 years of heavy drinking.

>

> BPs are often substance abusers. But, actually, everyone is

responsible

> for their own behavior -- even nadas. When they do FOG stuff its

really

> hard on a KO. We can offer validation and support here. You'll learn

> about boundaries (ie, limits). And you'll learn that it gets gets

worse

> before it gets better if/when you start setting limits. You're at

the

> point now where you're trying to decide what to do about setting

limits.

>

> > Ahh well.. I will sit back and listen for a while. Maybe some

other

> > folks here on the list have found ways of dealing that I have yet

to

> > see.

>

> A-OK Malene. I'm glad you finally found us. Fix yourself a cup of

hot

> chocolate and cozy up in one of our comfy chairs and post when ever

you

> want. The best way to get answers around here is to ask questions

but

> sometimes its hard to figure out what questions to ask.

>

> I've pasted our vocabulary list at the end of this post. See below.

>

> - Edith

> Moderator/Facilitator/Gal Friday: WelcomeToOz Family of NonBP Lists

>

> <<

> ++ WelcomeToOz Guidelines : Section 8 / Abbreviations ++

>

> ABBREVIATIONS: The WTO lists have abbreviations and their own

> vernacular. Words commonly used include:

>

> BP: person in your life who has BPD or whom YOU THINK has BPD

traits.

> BPD: Borderline Personality Disorder.

> BPSO: BP Significant Other. XBPSO=Ex BPSO (this has many

variations).

> DBT: Dialectic Behavioral Therapy, a cognitive-behavioral therapy

> that has been successful in the treatment of BPD. Also

see 'Therapies'

> at www.BPDCentral.com website.

> DEAR: Communication technique used to set limits and ask for things.

> See at www.BPDCentral.com (press 'Library').

> Defense Mechanisms: projection, denial, splitting, and

rationalization.

> Distortion campaign: a deliberate attempt by someone to smear your

> name because they have split you as all bad. They feel justified

and

> may tell lies or truly believe their distortions. May or may not

> involve the law.

> DSM-IV: Diagnostic and Statistical Manual, edition 4, published by

the

> American Psychiatric Association. Used for diagnostic and

insurance

> purposes.

> Fada: Used by some of the NonBP adult children of BPDs on the Oasis

> lists to refer to their BP father who was not-a-father in the true

> sense of the word.

> Fleas: Unhealthy behavioral reactions learned while living with a

BP.

> FOG: Fear, Obligation and Guilt, which make you susceptible to

> emotional blackmail.

> FOO: Family Of Origin (includes one's original mother, father, and

> other children).

> HF: High functioning.

> Hoovered: after the vacuum cleaner, to be sucked back into the

> relationship for another ride on the BPD rollercoaster.

> Intermittent reinforcement: when good outcomes happen on an

> unpredictable schedule, thereby reinforcing (ie, rewarding)

behavior.

> Examples: when the BP sometimes acts 'normal', when you sometimes

> don't observe limits (this is rewarding to the BP).

> KO: Kid Of [a BP].

> L & L: The booklet titled " Love and Loathing " .

> Lasagna therapy: A type of therapy whereby lasagna is dumped over

the

> head of a BP who constantly criticizes the way one eats--so much

so

> one won't eat with the family anymore. Salad dumping in the lap

is an

> adjunct part of this therapy. Currently under double-blind test

trials

> at several prestigious universities. <wink>

> LF: Low functioning.

> Light Bulb Effect: the realization that you're not crazy and BPD may

> explain the other person's behavior.

> LOL: Laughing Out Loud.

> Me2: " Me too " . Like, that happened to me, too.

> Mirroring: Not absorbing the BP's projections and reflecting them

back

> to the BP.

> Nada: Used by some of the NonBP adult offspring of BPDs on

the 'Oasis'

> lists to refer to their BP mother who was not-a-mother in the true

> sense of the word.

> NPD: Narcissistic Personality Disorder.

> NonBP: Person who is affected by someone else's BPD -- eg, you and

> your family.

> OCD: Obsessive Compulsive Disorder.

> Oz: the " Twilight Zone " feeling of not knowing what is real because

of

> the BP's distortions.

> PAS: Parental Alienation Syndrome: When a parent deliberately and

> repeatedly makes the other parent the " bad guy " and the child

believes

> the accusations (such as " Daddy doesn't love you. " ) A form of

child

> abuse.

> Projection: When a person denies certain feelings by attributing

them

> to someone else.

> PUVAS and DEAR: Communication techniques you can download at the

> www.BPDCentral.com library. DEAR is about setting personal limits

and

> PUVAS is about ONE of the communication techniques you can use to

> communicate with BPs. Other techniques in SWOE are defusing and

> walking away.

> Rationalization: Good-sounding reasons but not necessarily truthful.

> ROFL: Rolling on the floor laughing.

> SKids: Step kids.

> SO: Significant Other.

> Splitting: Black and white thinking, practiced by both Nons and BPs.

> Sponging: Absorbing the BP's projections and bad feelings. (See

> " mirroring " )

> STB-ex: Soon-to-be ex [husband, wife, or SO]

> SWOE: The book " Stop Walking on Eggshells. "

> SWOEW: The workbook to SWOE.

> Trigger: not a horse, but something that takes a person back to an

> earlier trauma. They respond to the current situation and also

relive

> the past one. For example, a BP's criticism about your clothes

> triggers you because your father did the same thing.

> UBM: Book titled " Understanding The Borderline Mother " .

>

> >>

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Hello Edith,

And thanks for your kind words. Yes, it is good to talk someone about all

this. Even more so to people who dont give me all the predictable answers of

how badly my nada needs me taking care of her right now. Because my need is

to find ways to set boundaries. I want to be kind about this. I dont want to

hurt her. Yes, I know she is sick. I guess my main issue is that ever since

my parents divorce when I was 5 I was my nada's main friend, confidante and

caretaker. I just dont have it in me to give any more, and I like the

boundaries that I have been setting for a few years now. Of course each one

of those boundaries makes her try to split me off from others. However, by

now, we are down to that most people finally sees through her. Her drinking

has simply gotten so horrifically out of hand, that its completely impossible

to ignore, along with the behaviors of course.

>

> BPs come in different flavors. Some are high-functioning, some are

> low-functioning. They're all spread out along a continuum between the

> two extremes. And, they have an assortment of any five or more of the 9

> diagnostic DSM criteria. BPs are mentally ill. They don't use real-world

> logic. And, because we KOs (Kids Of BPs) have no background in " normal " ,

> we have nothing normal to compare their behavior with. KOs are in an

> unchosen relationship with their nada/fada (BP mother or BP father). In

> other words, we didn't ask for a parent with a mental disorder but

> that's what we got.

I believe the only behavior off that list that my nada does not have is the

tendency to cut or self injure. I have never seen her do that. However she

smokes like a chimney and drinks like a sponge so I guess that is enough self

destruction for her. At the same time she is decently high functioning, in

that she can hold a job and atleast on the surface looks like she can take

care of herself. She still comes completely apart when/if she is alone in the

house, and since my grandmother recently passed away she has lots of time to

be alone in the with no company but the bottle. Gawd I am glad I dont have to

be there to watch it.

>

> To continue. BPs use rationalization (ie, they tell lies), projection

> (they blame others), denial, and splitting as (unconscious) ego defense

> mechanisms. The ego defenses are automatically triggered whenever a BP

> is confronted. BPs have a very tiny and/or fragmented ego.

I started seeing through all my mom's ego defenses already as a teen,

although I didnt have the sophistication or knowledge to communicate it to

people. I tried to explain to my Dad how my mom would run around in the house

and split everyone out against each other, but he didnt believe me. He

thought I was an unstable teen. Now where the games and the lies has finally

reached proportions that cant be hidden he finally believes me. He still

claims that she was *never* before like this. Which I just happen to know is

a crock of bullcrap. The problem still is though that I am the only one who

gives my nada a sense of who she is. I am her one and only. The only one she

will ever truly love and need. Unfortunately, that brings with it that she

expects me to be there for all her emotional needs. No boundaries. We are

supposed to be Mother/Daughter and there is not supposed to be any physical

or emotional boundaries between us.

>

> The lies are nada's (ego protective) rationalizations. And, when

> confronted, that must have brought out her denial, projection, and/or

> splitting (into all good or all bad). This isn't the easiest stuff in

> the world to learn about. I hope you have a copy of SWOE.

I dont have a copy of the book you refer to. However, I do have some

psychology knowledge, so I think I know what you are talking about.

>

> Yes, but she's not necessarily using real-world logic and she may not

> mean what she says. Plus, you've not yet learned to not take her stuff

> personally. This is hard for KOs to understand because the KO's pain is

> real and they believe their BP parent is being honest and truthful.

Actually, at this point I WANT to take it personally. I dont want to focus on

how hard she has it. How poor she is. How much she needs me. I want to be

able to get hurt by her behavior, to say I AM HURT. I want to not focus on

what she is feeling. I just cant any more. I want my feelings to be ok, I

want the room to be who I am, to feel how I feel. Even if sometimes it

absolutely sucks.

>

> Yes, and that's an ace card that she holds. She planted that 'hook' in

> you early in your life and she knows that she can control your behavior

> (ie, she knows that you'll feel FOG (Fear, Obligation, and/or Guilt))

> when she yanks on that hook. Nadas (BP mothers) lack empathy so they

> don't know how bad it hurts their KO when they do stuff like that. They

> can read us (our reactions) like a book so the idea is to learn to not

> react -- like it says in the post on Control Freaks that I posted

> earlier. If the KO doesn't show a reaction, then it takes the air out of

> their nada's balloon. Plus there's lots other stuff we can share with

> you.

Actually what happened is when I was 19 I cut contact with her for around 5

yrs. Maybe a little more. We got back in contact around 6+ yrs ago. Mainly we

got into contact when I moved out of the country I was raised in and moved to

the US. I guess I could handle being in contact with her across the pond.

lol. At the time all her suicide threats and other behaviors just didnt help

her any in that I still cut the contact and up until now this has served as a

protection for me. My nada knows that I can live without her. She feels she

cant live without me. This means her fear of losing me has made her atleast

try to tone down some of those behaviors. The current crisis has been

provoked by my grandmothers recent death. (and a magnificent lady my

grandmother was, and BTW my nada is not the only one who grieves for my

grandmother). My nadas splitting games and lies has right now alienated her

from her siblings, from my counsins, and from me. I am not going to call her

right now, but if she calls me then I will take the call. She said she wanted

to visit for xmas and I guess I can live with that as well. She will be on my

turf so that gives me some power. She has maybe a couple of friends, and a

ton of drinking buddies and aquintances left in her life, but who knows how

long they will last. Not to mention who knows how long her kidney or liver

can still stay alive? Rumor has it her kidneys are beginning to act up.

ly the doctors in the european country that I come from are fairly

stupid when it comes to noticing alcohol related physical diseases, and the

culture in general seem to think that alcoholism is normal. I have considered

calling her doctor and letting him know about her drinking, but I am afraid

that it wont do any good so I have procrastinated on it.

>

> BPs are often substance abusers. But, actually, everyone is responsible

> for their own behavior -- even nadas. When they do FOG stuff its really

> hard on a KO. We can offer validation and support here. You'll learn

> about boundaries (ie, limits). And you'll learn that it gets gets worse

> before it gets better if/when you start setting limits. You're at the

> point now where you're trying to decide what to do about setting limits.

Well, maybe a little further than the point of starting to set limits :o).

Thing is, I would love to find a way to set limits for her now that does not

necessarily end up in her feeling ever so abandoned and rejected. Last time I

cut contact and left her everyone ended up turning against me due to my nadas

clever splitting games. Apart from the fact that I still do care about her

getting hurt, and has no intention to hurt her, I would also like to see it

be a little less dramatic this time around. So far my Dad is actually on my

side. Last time he was on my side until my mom's suicide threats took

overwhelming proportions, then he turned against me. He has never really been

on my side though because he feels it is his fault that my mom started to

lose it in drink, due to the divorce, and he has wanted me to find a way to

make up for that. He finally admitted to me that his emphasis on getting me

to make my nada better was based in his guilt over leaving her. Maybe after

having admitted that he can finally back off and also admit that neither him

nor I could do anything for my nada. She is also still very inlove with him,

and so he feels it is important for him to keep a physical distance to her.

He has remarried many years ago of course. My nada's lack of boundaries with

my dad involves sexual content so he has no trouble understanding why he has

to keep the boundaries intact. I have tried to explain to him that I need to

keep my boundaries intact for the same reasons. But of course he doesnt

consider that I mean it very literally.

>

> A-OK Malene. I'm glad you finally found us. Fix yourself a cup of hot

> chocolate and cozy up in one of our comfy chairs and post when ever you

> want. The best way to get answers around here is to ask questions but

> sometimes its hard to figure out what questions to ask.

Thanks for the welcome.

>

> I've pasted our vocabulary list at the end of this post. See below.

<big grin> yes, i can see that i will need it.

Warm Regards

Malene

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In a message dated 3/10/03 4:25:27 AM Pacific Standard Time,

bothsidesnow2003@... writes:

Thanks Deirdra,

Yeah... although my mom is not discriminating when it comes to drink. Her

preference is still scotch.

Nice to hear from you,

Malene

> Hey Malene, Welcome. I am new too. My mom's favorite cocktail was a pack

> of lies mixed with Canadian Club. I am glad you are here, sounds like our

> Mom's are pretty similar.

> Deidra

>

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In a message dated 3/10/03 6:31:58 AM Pacific Standard Time,

christy@... writes:

Thanks Christy,

Malene

> Welcome Malene-

> I have found great support/education here- I'm sure you will too.

> Take care,

> Christy

>

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In a message dated 3/10/03 9:28:06 AM Pacific Standard Time,

ipedersen@... writes:

Hey Ilene,

Thanks for the welcome. I have not actually gotten any of those books yet.

Dont know why I never considered there would be support materials and groups

out there for children of borderline parents.

It is harder for me to threaten with the police since my nada is far away

across the pond. I am not quite sure what the rules are over there for doing

wellfare checks, but I could just call the local police station and ask them

if that option is available to me. I work at a suicide and crisis hotline so

it shouldnt be nothing new for me. Nice idea actually. Not the least, my nada

actually threatens my dad more than she does me. She knows I am more on to

her games than he is. But if I give him that option.. then it might work.

I have the problems of my nada's health as well. She is only 64, but her

health is not very good. I am in several different minds about this to tell

you the truth. I am worried about her. I am also in a sense trying to prepare

myself to lose her, and it is not a comforting thought. Unrealistic as I know

it is, as long as she is alive there might be an option to affect some kind

of repair of our relationship.

Anyways,

Thanks for the kind words,

Malene

>

> Hi and welcome! I think our wonderful moderator Edith said it all

> pretty much! Have you read SWOE or UTBM yet? they are great books. I

> also got a lot of help from " Toxic Parents " and " Codependent No More " .

> There is plenty to learn from lurking and posting on this list. The

> validation is wonderful and heaven knows we need all we can get! My

> nada threatened suicide a few times and when I finally got fed up enough

> 2 yrs ago, she really went berserk. My therapist told me not to read

> her letters or write her and that was so hard. Randi and Edith and this

> group helped me stay firm. One way that KOs here have found to deal

> with those suricide threats is by saying very calmly, that they are

> worried about nada and going to call the police to come and check on

> her. That ususally puts the ball (and responsiblility!) back in her

> court. We have been taught by nada that we are responsible for her and

> everyone else's feelings. We aren't! that is probably hard to unlearn,

> but it can be done. I've also learned that my expectations and hopes ,

> when they aren't met, can lead to MY anger and resentment. So now I'm

> changing my expectations about nada. A BP is mentally ill and I cannot

> expect her to behave normally. ( that doesn't mean I want a relationship

> with her, because I don't. My nada is 89 and I'm an only child. Right

> now I'm writing her occasionally because I'm 2100 miles away and need

> some way to monitor her health. My cousins had agreed to help me when I

> cut off contact, but they didn't, so I'm back in a semi-relationship.)

> Remember, you don't have to take abusive behavior from anyone! Btw,

> " Boundaries " is another good book about setting limits with abusive people.

> Keep reading and posting when you feel like it!

>

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In a message dated 3/10/03 10:35:43 AM Pacific Standard Time,

sherby2k@... writes:

Hey ,

I just wanted to tell you that I was once in a long term relationship with

someone whom i had hired to help me, but who ended up abusing me terribly. It

was horrifically difficult to hire a therapist after that experience, but I

found someone very patient, and kind, who was able to help me through that

fear.

It has been a good experience to get some real help.

warm regards

Malene

> and as I doubt I'll ever go to a therapist (my BPD

> mom used therapists - she'd find one, convince him/her that she was a

> victim of an abusive family, and then troop us all in to be

> confronted by him/her. While cerebrally I know that therapists can be

> useful, at a deeper level I don't think I can ever go to one), this

> list is pretty much my only support group. I'm glad I found it.

>

>

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Hi and welcome! I think our wonderful moderator Edith said it all

pretty much! Have you read SWOE or UTBM yet? they are great books. I

also got a lot of help from " Toxic Parents " and " Codependent No More " .

There is plenty to learn from lurking and posting on this list. The

validation is wonderful and heaven knows we need all we can get! My

nada threatened suicide a few times and when I finally got fed up enough

2 yrs ago, she really went berserk. My therapist told me not to read

her letters or write her and that was so hard. Randi and Edith and this

group helped me stay firm. One way that KOs here have found to deal

with those suricide threats is by saying very calmly, that they are

worried about nada and going to call the police to come and check on

her. That ususally puts the ball (and responsiblility!) back in her

court. We have been taught by nada that we are responsible for her and

everyone else's feelings. We aren't! that is probably hard to unlearn,

but it can be done. I've also learned that my expectations and hopes ,

when they aren't met, can lead to MY anger and resentment. So now I'm

changing my expectations about nada. A BP is mentally ill and I cannot

expect her to behave normally. ( that doesn't mean I want a relationship

with her, because I don't. My nada is 89 and I'm an only child. Right

now I'm writing her occasionally because I'm 2100 miles away and need

some way to monitor her health. My cousins had agreed to help me when I

cut off contact, but they didn't, so I'm back in a semi-relationship.)

Remember, you don't have to take abusive behavior from anyone! Btw,

" Boundaries " is another good book about setting limits with abusive people.

Keep reading and posting when you feel like it!

Ilene

Edith wrote:

> randerdk wrote:

>

> > Hey List,

> >

> > Well, mostly I guess I will sit back and listen for a while. My mom

> > has borderline personality disorder, and right now, well the games

> > are overwhelming. I am hurt and angry as living hell.

>

> The anger is good but the emotional hurt can be very painful.

>

> > I havent heard

> > from her since we had a big fight on the phone where I held her

> > responsible for a whole bunch of lies she had told me.

>

> Hmmm, OK. I'll run some stuff by you...

>

> BPs come in different flavors. Some are high-functioning, some are

> low-functioning. They're all spread out along a continuum between the

> two extremes. And, they have an assortment of any five or more of the 9

> diagnostic DSM criteria. BPs are mentally ill. They don't use real-world

> logic. And, because we KOs (Kids Of BPs) have no background in " normal " ,

> we have nothing normal to compare their behavior with. KOs are in an

> unchosen relationship with their nada/fada (BP mother or BP father). In

> other words, we didn't ask for a parent with a mental disorder but

> that's what we got.

>

> To continue. BPs use rationalization (ie, they tell lies), projection

> (they blame others), denial, and splitting as (unconscious) ego defense

> mechanisms. The ego defenses are automatically triggered whenever a BP

> is confronted. BPs have a very tiny and/or fragmented ego. And, when

> they're on the defensive (to protect their ego) the defense mechanisms

> happen automatically -- and they don't operate based on real-world

> logic. BPs can also be manipulative, and they lack empathy, etc etc. But

> the defense mechanisms " just happen " . Ofttimes the BP will say later

> that they don't remember what happened when chaos happened. This can be

> true because some of them dissociate (for example, while raging).

>

> The lies are nada's (ego protective) rationalizations. And, when

> confronted, that must have brought out her denial, projection, and/or

> splitting (into all good or all bad). This isn't the easiest stuff in

> the world to learn about. I hope you have a copy of SWOE.

>

> > Anyways, it is all quite hurtful these days,

>

> Yes, but she's not necessarily using real-world logic and she may not

> mean what she says. Plus, you've not yet learned to not take her stuff

> personally. This is hard for KOs to understand because the KO's pain is

> real and they believe their BP parent is being honest and truthful.

>

> > and I just dont know

> > what to do no more.

>

> But you ended up here and that's good.

>

> > I know if I cut contact with her then the suicide

> > threats etc, etc will go totally bananas.

>

> Yes, and that's an ace card that she holds. She planted that 'hook' in

> you early in your life and she knows that she can control your behavior

> (ie, she knows that you'll feel FOG (Fear, Obligation, and/or Guilt))

> when she yanks on that hook. Nadas (BP mothers) lack empathy so they

> don't know how bad it hurts their KO when they do stuff like that. They

> can read us (our reactions) like a book so the idea is to learn to not

> react -- like it says in the post on Control Freaks that I posted

> earlier. If the KO doesn't show a reaction, then it takes the air out of

> their nada's balloon. Plus there's lots other stuff we can share with

> you.

>

> > So far I have satisfied

> > myself with the very far physical distance there is between us, and

> > just handled her for visits and phone calls. But by now I am frankly

> > also so angry that I am about to the place where I dont care about

> > her suicide threats and bad health any more. She has done it to

> > herself with the last 20 years of heavy drinking.

>

> BPs are often substance abusers. But, actually, everyone is responsible

> for their own behavior -- even nadas. When they do FOG stuff its really

> hard on a KO. We can offer validation and support here. You'll learn

> about boundaries (ie, limits). And you'll learn that it gets gets worse

> before it gets better if/when you start setting limits. You're at the

> point now where you're trying to decide what to do about setting limits.

>

> > Ahh well.. I will sit back and listen for a while. Maybe some other

> > folks here on the list have found ways of dealing that I have yet to

> > see.

>

> A-OK Malene. I'm glad you finally found us. Fix yourself a cup of hot

> chocolate and cozy up in one of our comfy chairs and post when ever you

> want. The best way to get answers around here is to ask questions but

> sometimes its hard to figure out what questions to ask.

>

> I've pasted our vocabulary list at the end of this post. See below.

>

> - Edith

> Moderator/Facilitator/Gal Friday: WelcomeToOz Family of NonBP Lists

>

> <<

> ++ WelcomeToOz Guidelines : Section 8 / Abbreviations ++

>

> ABBREVIATIONS: The WTO lists have abbreviations and their own

> vernacular. Words commonly used include:

>

> BP: person in your life who has BPD or whom YOU THINK has BPD traits.

> BPD: Borderline Personality Disorder.

> BPSO: BP Significant Other. XBPSO=Ex BPSO (this has many variations).

> DBT: Dialectic Behavioral Therapy, a cognitive-behavioral therapy

> that has been successful in the treatment of BPD. Also see 'Therapies'

> at www.BPDCentral.com website.

> DEAR: Communication technique used to set limits and ask for things.

> See at www.BPDCentral.com (press 'Library').

> Defense Mechanisms: projection, denial, splitting, and rationalization.

> Distortion campaign: a deliberate attempt by someone to smear your

> name because they have split you as all bad. They feel justified and

> may tell lies or truly believe their distortions. May or may not

> involve the law.

> DSM-IV: Diagnostic and Statistical Manual, edition 4, published by the

> American Psychiatric Association. Used for diagnostic and insurance

> purposes.

> Fada: Used by some of the NonBP adult children of BPDs on the Oasis

> lists to refer to their BP father who was not-a-father in the true

> sense of the word.

> Fleas: Unhealthy behavioral reactions learned while living with a BP.

> FOG: Fear, Obligation and Guilt, which make you susceptible to

> emotional blackmail.

> FOO: Family Of Origin (includes one's original mother, father, and

> other children).

> HF: High functioning.

> Hoovered: after the vacuum cleaner, to be sucked back into the

> relationship for another ride on the BPD rollercoaster.

> Intermittent reinforcement: when good outcomes happen on an

> unpredictable schedule, thereby reinforcing (ie, rewarding) behavior.

> Examples: when the BP sometimes acts 'normal', when you sometimes

> don't observe limits (this is rewarding to the BP).

> KO: Kid Of [a BP].

> L & L: The booklet titled " Love and Loathing " .

> Lasagna therapy: A type of therapy whereby lasagna is dumped over the

> head of a BP who constantly criticizes the way one eats--so much so

> one won't eat with the family anymore. Salad dumping in the lap is an

> adjunct part of this therapy. Currently under double-blind test trials

> at several prestigious universities. <wink>

> LF: Low functioning.

> Light Bulb Effect: the realization that you're not crazy and BPD may

> explain the other person's behavior.

> LOL: Laughing Out Loud.

> Me2: " Me too " . Like, that happened to me, too.

> Mirroring: Not absorbing the BP's projections and reflecting them back

> to the BP.

> Nada: Used by some of the NonBP adult offspring of BPDs on the 'Oasis'

> lists to refer to their BP mother who was not-a-mother in the true

> sense of the word.

> NPD: Narcissistic Personality Disorder.

> NonBP: Person who is affected by someone else's BPD -- eg, you and

> your family.

> OCD: Obsessive Compulsive Disorder.

> Oz: the " Twilight Zone " feeling of not knowing what is real because of

> the BP's distortions.

> PAS: Parental Alienation Syndrome: When a parent deliberately and

> repeatedly makes the other parent the " bad guy " and the child believes

> the accusations (such as " Daddy doesn't love you. " ) A form of child

> abuse.

> Projection: When a person denies certain feelings by attributing them

> to someone else.

> PUVAS and DEAR: Communication techniques you can download at the

> www.BPDCentral.com library. DEAR is about setting personal limits and

> PUVAS is about ONE of the communication techniques you can use to

> communicate with BPs. Other techniques in SWOE are defusing and

> walking away.

> Rationalization: Good-sounding reasons but not necessarily truthful.

> ROFL: Rolling on the floor laughing.

> SKids: Step kids.

> SO: Significant Other.

> Splitting: Black and white thinking, practiced by both Nons and BPs.

> Sponging: Absorbing the BP's projections and bad feelings. (See

> " mirroring " )

> STB-ex: Soon-to-be ex [husband, wife, or SO]

> SWOE: The book " Stop Walking on Eggshells. "

> SWOEW: The workbook to SWOE.

> Trigger: not a horse, but something that takes a person back to an

> earlier trauma. They respond to the current situation and also relive

> the past one. For example, a BP's criticism about your clothes

> triggers you because your father did the same thing.

> UBM: Book titled " Understanding The Borderline Mother " .

>

> >>

>

>

>

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The really ironic part for me is that my nada used the " Boundaries "

book as a weapon against the rest of the family for years...she would

say " See? This book tells me that I need to set boundaries so you

stop abusing me. " In fact, she started a church group called

Boundaries for abused/battered women. You wouldn't believe the looks

the rest of the family got from those group members.

I stayed far away from that book, and now I wonder what would have

happened if I had read it all those years ago.

Thanks, Edith. I'm gonna go back and read that Control Freak article

(I started it when you first posted but I got called away). I've

already learned tons of good information from this list.

> > Thanks for that glossary, Edith, very helpful - I think you forgot

> > one, though:

> >

> > Jaw-Dropping Revelation: " You mean there's a NAME for that???? " ;)

>

>

> Ah yes, the " lightbulb effect " . I think that one is in Randi's SWOE.

>

> > My own personal Jaw-Dropping Revelations:

> >

> > BPD

> > Distortion Campaign

> > PAS (Parental Alienation Syndrome)

> > Projection

> > Splitting

>

> You're getting there. We know a lot more now compared to when I had

my

> light-bulb experience seven years ago. BPD first appeared in the

DSM in

> 1980, Kreisman's I Hate You - Don't Leave Me was published in 1989,

and

> then SWOE was published in 1998. I studied psychology in the 60's

and

> there were no answers about personality disorders then. And there's

> still lots to learn even now.

>

> > I found out about BPD (wow, do they know my mom???) a week ago,

> > joined this list two days after that, and pretty much ever since

then

> > I've been stunned at finding out that there are other people who

have

> > been through some of the same stuff as I have. I have both of

those

> > books on order, and as I doubt I'll ever go to a therapist (my BPD

> > mom used therapists - she'd find one, convince him/her that she

was a

> > victim of an abusive family, and then troop us all in to be

> > confronted by him/her. While cerebrally I know that therapists

can be

> > useful, at a deeper level I don't think I can ever go to one),

this

> > list is pretty much my only support group. I'm glad I found it.

>

> And we're glad you're here. I never went to a therapist. I learned

> something from every KO that ever posted to the Oasis lists over the

> years. It is only now that therapists are getting the special

training

> that's necessary in order to help BPs and their family members. I'll

> post some info about therapy/therapists later, in another post.

>

> Speaking of SWOE, I'll post a part of Larry J Siever's Forward,

from p

> viii of SWOE, that kinda sums up some of the BPD stuff:

>

> " ... when we see the adult BP, we see an individual who has learned

a

> variety of " techniques " to manage their own self-esteem and

emotional

> swings by trying to control the behaviors of those they depend on

and

> wanting to stay near them. They have difficulty seeing how their

> controlling behaviors are destructive to their relationshps because

they

> know no other alternative. The crucial point that the authors

emphasize

> again and again, particularly in the later stages of the book, is

the

> need for the BP to take responsibility for their behavior and for

the

> non-BP to also take responsibility for their role in the

relationship.

> Whatever has transpired before for both parties, it is only by

taking on

> responsibility for these behaviors as an adult that the possibility

of

> true change can occur... "

>

> Edith here.

> We KOs were in an unchosen (rather than chosen) relationship with

our

> nada/fada so our problems in certain aspects are different and

unique.

> But, the words I want to point out that are significant in the above

> paragraph, are the words control and controlling. In controlling

their

> KOs, nadas and fadas tended to over-control. And that's why I

thought

> the post the other day re Control Freaks was important. It, like

SWOE

> and UBM, bears reading and re-reading. The only book that was

written

> specifically for KOs so far is Ann Lawson's Understanding

The

> Borderline Mother (UBM, 2000). And the books on Boundaries, Toxic

> Parents, Co-dependence, The Dance of Anger, & etc can all help.

There's

> a listing of books in the Reference section of SWOE and also on the

BPD

> Central website at:

> http://www.bpdcentral.com/books/more_books.shtml

>

> We KOs proceed one tiny step at a time along the healing path. Lots

of

> KOs are numbed out emotionally when they first join this list and

part

> of the healing process for them is to get in touch with their

feelings.

>

> - Edith

> Moderator/Facilitator /

> WelcomeToOz Family of NonBP Email Support Groups

>

> .

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Hi, la,

Welcome to the group! I am so glad you found us, but I am sorry about

your father. It is so great that you found a good doctor. Alot of us in this

group share a similar story about going through several doctors before we

found a good one. Some people have even lost their LO before they received a

proper diagnosis. Those of us who know what we are dealing with are already

ahead

of the game, at least for a while. Please let us know how things are going,

and your English is beautiful!

Hugs,

Piper

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Hi la,

I'm glad to hear of someone else who experienced a great improvement

in their loved one. I did, too. My mother was in a rehab place that

was EXCELLENT, thank goodness. After 50 days of halucinations,

slumping left, and not being able to walk really well, she improved

to the point where we are considering the possibility of bringing her

home. Right now, the plan is for long-term care because she needs a

lot of physical therapy due to the Parkinson's part of the problem.

Anyway, for the last 26 days she is clear in her thinking, can walk

straight (since being diagnosed and given sinement for the muscle

rigidity) and is SO much better. It is quite a delemna we are in.

I'm glad your dad was able to come home, and it sounds like he has

character like my mom. I think she did not want to go to a nursing

home, and was trying extra hard. This along with physical therapy,

carefully monitored nutrition, and being diagnosed properly with LBD

and given Sinement (she also takes Aricept) did wonders for her.

To complicate our problem, she has osteoporosis and cracked 2

vertebrae while at home, which was what landed her in the hospital,

and hence why we are extra cautious about bringing her home.

It is a scary thing, but thank goodness for the " good times. " How

long has your dad been doing so well? God Bless you and I'm happy

things are going well for you. Your English is EXCELLENT, too!

Kathy

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Welcome to our group.

It is difficult to understand this disease. However it is great having

people who do understand and do try to help.

God Bless you and your family.

M

>

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>FILETIME=[8BE516D0:01C3D3AF]

>

>Hi everybody,

>

>I'm a new member. My name is la, I'm Italian (so forgive my

>mistakes), but live and work in London.

>

>My father (69 years old) has been diagnosed LBD only recently. We

>know that a clear LBD diagnosis can be done only post-mortem, but it

>looks very likely he has LBD since he is responding very well to the

>new medical treatment.

>For two years we had no diagnosis. He was clearly ill, treated as an

>Alzheimer patient with a Parkinson component, but with no result from

>the medicines. In summer 2002 he was walking 1 hour a day with my mum

>in the mountains, and in October 2002 he was almost unable to stay

>upright. We had bad luck with incapable doctors (or, better to say,

>with doctors who had no curiosity, nor will to understand what my

>father had, only saying it was a difficult case), wrong surgical

>operations and bad rehabilitation hospitals. In March 2003 my father

>was declared unable to walk for the rest of his life. We didn't stop

>searching for better doctors and finally we found a good hospital in

>Monza (close to Milan) and an excellent neurologist who tried several

>treatments before the actual one.

>

>As Phyllis wrote in her post, the same happened to my father: he

>started getting better and better. We know he will never recover, but

>his quality of life is much better now than after 3 months in the

>rehabilitation hospital.

>The neurologist said that if he reacted well to the new treatment,

>this was a sign it can be LBD. The good news is that he has now the

>right medicines, the bad is that LBD is (if possible) worse than

>Alzheimer.

>He now talks more, is more active, wants to stay up longer, stay with

>my mum and other people (but he cannot leave home) and, very

>important for him, started walking again with the aid of a device (I

>don't know the name of it in English, but it's a round structure,

>with wheels... 'walker' maybe?). My father has always had a very

>strong character and I'm sure this is helping him (and us) a lot to

>go through all this.

>

>As I said, I live in London. My father lives with my mum in Milan,

>where my sister lives as well. I have also a brother but he is near

>Venice. So, it's my mum who mainly assists my father. Being so far

>away is hard. In the last few days I was reading your posts, and I

>realized how lucky we are to have still my father present. Being part

>of this group it's also a way I can help my family even from here.

>When I've read things that my dad does as well, I called my mum and

>reassured her that it's part of this awful illness (if this can be

>reassuring...).

>

>I went back to Milan for Christmas and I cannot forget my father

>waiting for me upright, proudly smiling while he was showing to me

>that he could walk again. I was almost crying for happiness. I was so

>much looking forward to being back to talk to him, to tell him about

>me and my life in London! Unfortunately, the day after, he fell down

>the bed. He didn't hurt himself much, but it had a psychological

>negative effect. The next days he was again bad, depressed, very

>tired, he played eventually cards to please us. I could not talk to

>him much, because he didn't want to show his feelings (my dad has

>never showed his feelings much). Fortunately, after 4 days, he came

>back as when I arrived :-) I am absolutely sure that, together with

>the right medical treatments, it's his character and the fact that

>finally we have found a doctor who sees a man, not a hopeless body.

>It was extremely helpful also for him to start a physiotherapy at

>home. A physiotherapist comes to my parents' place 3 times a week

>and, again, she immediately said he wanted him to walk again.

>

>All the best to all of you and you LOs,

>la

_________________________________________________________________

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Welcome to the group la. Let me first say that I am so jealous that

you get to live in to beautiful places in the world! (I live in Toronto,

Canada).

I am so glad that through your persistence that you were able to find a good

doctor who was willing to listen and work with your dad - this makes such a

big difference! Can I ask what medications your father is taking? I am

always interested in the medications as I have to often tweak my mother's

medications to either get her walking again or out of sleeping all day.

All the best to you and your family.

Courage

New member

>Hi everybody,

>

>I'm a new member. My name is la, I'm Italian (so forgive my

>mistakes), but live and work in London.

>

>My father (69 years old) has been diagnosed LBD only recently. We

>know that a clear LBD diagnosis can be done only post-mortem, but it

>looks very likely he has LBD since he is responding very well to the

>new medical treatment.

>For two years we had no diagnosis. He was clearly ill, treated as an

>Alzheimer patient with a Parkinson component, but with no result from

>the medicines. In summer 2002 he was walking 1 hour a day with my mum

>in the mountains, and in October 2002 he was almost unable to stay

>upright. We had bad luck with incapable doctors (or, better to say,

>with doctors who had no curiosity, nor will to understand what my

>father had, only saying it was a difficult case), wrong surgical

>operations and bad rehabilitation hospitals. In March 2003 my father

>was declared unable to walk for the rest of his life. We didn't stop

>searching for better doctors and finally we found a good hospital in

>Monza (close to Milan) and an excellent neurologist who tried several

>treatments before the actual one.

>

>As Phyllis wrote in her post, the same happened to my father: he

>started getting better and better. We know he will never recover, but

>his quality of life is much better now than after 3 months in the

>rehabilitation hospital.

>The neurologist said that if he reacted well to the new treatment,

>this was a sign it can be LBD. The good news is that he has now the

>right medicines, the bad is that LBD is (if possible) worse than

>Alzheimer.

>He now talks more, is more active, wants to stay up longer, stay with

>my mum and other people (but he cannot leave home) and, very

>important for him, started walking again with the aid of a device (I

>don't know the name of it in English, but it's a round structure,

>with wheels... 'walker' maybe?). My father has always had a very

>strong character and I'm sure this is helping him (and us) a lot to

>go through all this.

>

>As I said, I live in London. My father lives with my mum in Milan,

>where my sister lives as well. I have also a brother but he is near

>Venice. So, it's my mum who mainly assists my father. Being so far

>away is hard. In the last few days I was reading your posts, and I

>realized how lucky we are to have still my father present. Being part

>of this group it's also a way I can help my family even from here.

>When I've read things that my dad does as well, I called my mum and

>reassured her that it's part of this awful illness (if this can be

>reassuring...).

>

>I went back to Milan for Christmas and I cannot forget my father

>waiting for me upright, proudly smiling while he was showing to me

>that he could walk again. I was almost crying for happiness. I was so

>much looking forward to being back to talk to him, to tell him about

>me and my life in London! Unfortunately, the day after, he fell down

>the bed. He didn't hurt himself much, but it had a psychological

>negative effect. The next days he was again bad, depressed, very

>tired, he played eventually cards to please us. I could not talk to

>him much, because he didn't want to show his feelings (my dad has

>never showed his feelings much). Fortunately, after 4 days, he came

>back as when I arrived :-) I am absolutely sure that, together with

>the right medical treatments, it's his character and the fact that

>finally we have found a doctor who sees a man, not a hopeless body.

>It was extremely helpful also for him to start a physiotherapy at

>home. A physiotherapist comes to my parents' place 3 times a week

>and, again, she immediately said he wanted him to walk again.

>

>All the best to all of you and you LOs,

>la

>

>Welcome to LBDcaregivers.

>

>

>

>

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In a message dated 1/5/04 11:20:53 AM Central Standard Time,

pgabriella@... writes:

la

Hi la,

Can I ask what meds your father is taking?

Thanks,

Deb

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Hi Deb,

I copy and paste here one of my previous messages.

Take care,

la

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>X-eGroups-Remote-IP: 212.67.96.160

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>X-Yahoo-Profile: pgabriella

>Mailing-List: list LBDcaregivers ; contact

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>Date: Wed, 7 Jan 2004 19:23:17 +0000

>Subject: " Italian " medications

>Reply-To: LBDcaregivers

>

>Hi Courage and Josie:

>

>My father took Excelon since last June, then he switched to Madopar

>(same name in the U.S.: active ingredients are Levodopa and

>Benserazide) and Memac (in the U.S. it is called Aricept, as you can

>see at

>http://www.behavenet.com/capsules/treatments/drugs/donepezil.htm and

>the active ingredient is Donepezil).

>Against depression and to help him to sleep he's taking Trittico

>(Tradozone is the main ingredient and you should have it in the U.S.

>with the same name:

>http://sl.schofield3.home.att.net/medicine/psychiatric_drugs_chart.html).

>

>Madopar was given to him because of his rigidity in the movements. We

>think this helped him a lot to start walking again. It gives him also

>a better control on his muscles.

>

>So it looks that they're not revolutionary European medications not

>yet available in the U.S.. In my opinion, every person reacts

>differently: the neurologist tried several medications on my dad

>before we found that this 'mix' works best. At least now... but I

>cannot always think that the worst will come.

>

>

>Cheers,

>la

>

>In a message dated 1/5/04 11:20:53 AM Central Standard Time,

>pgabriella@... writes:

>la

>Hi la,

>

>Can I ask what meds your father is taking?

>

>Thanks,

Deb

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Why did you have a thyroidectomy? Do you have any recent labs that you would like to post? The doc list is in "Files." kady williams wrote: Hello everyone, I have joined this group because I live in Texas and want to know more about this sometimes dreadful disease I have with people close to me. I live in Fort Worth, Texas. I had a total thyroidectomy in 2004, but have not fully

recovered yet. I heard that it's a long process. I still have hypo symptoms and need adjustments on my meds quite frequently. I recently started taking Armour after several years on Levoxithryrone and had it adjusted down to .10 mg because I was overmedicated all this time. I've lost some weight and even though I try to eat nutritiously, I still have severe IBS. I just don't know what to do. If anyone can give me some insight on doc, rememdies, etc that can help me, I sure appreciate your help. Kady

Yahoo! Messenger with Voice. PC-to-Phone calls for ridiculously low rates.

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