Re:

[Guest guest]

In a message dated 8/5/02 9:29:11 PM Central Daylight Time, Mandelbh@...

writes:

> Now, to contribute something on topic: is there anyone out there concerned

> with getting a LO to stop driving?

This was a toughie, Bertha. Blessedly, I had the help of the Cognitive

Neurologist at s Hopkins, who told Bob that if he was a land resident

the doctor would be required by law to inform the state that he didn't think

Bob should be driving. He reinforced this at semi-annual visits with the use

of the spatial disorientation tests. I had to hide his vehicle through

juggling. If you REALLY want to know how I will answer, but trust me it was

a juggling act!! A painful one at that, mostly because it meant I had to

deceive Bob about bringing his vehicle back even when I KNEW he shouldn't be

driving. Very, very, very painful for all involved.

If you need the specifics of " mechanics " I have a lot of ideas gleaned from

others.

Cheryl

[Guest guest]

Bertha,

I hope that my can teach the twins to drive. If LBD or AD is

hereditary, it'll be too late for me to teach anyone to drive!! My Dad

has LBD and my Grandmother on my Mom's side had AD. So even if these

diseases skip generations, I'm not in a good genetic place if you know

what I mean!

My Dad was told by the doctor last week that he can't drive. He said

that his reflexes are not good enough to respond in an emergency and it

could be dangerous. Dad was driving very short distances (1/2 mile of

roads under 25 mph to strip mall where he could get a hair cut, pick up

a few groceries for Mom, etc.) I have to say that us kids were bugging

Mom to get him off the road because quite frankly, none of us would get

in the car with him, or let him drive his grandchildren anywhere. I

think Mom had a hard time putting her foot down because it was the last

thing that gave her a little reprieve from him. Once he stops driving,

he loses the last bit of independence and Mom has to take him everywhere.

The day after Dad was told not to drive, he asked my Mom if he could

drive and she flat out said no. She told Dad that the doctor said he

could be dangerous and if he hurt someone that she wouldn't be able to

live with the guilt and neither would he. He reluctantly agreed. Since

then, he has asked my brother in law questions about how to drive such

as " When you drive, do you line up your car with the double yellow line?

Or do you line it up with the white line on the side of the road? " I

can't imagine what is going on in his head. I just know that this isn't

the last we've heard of this driving issue. This probably sounds like

Dad is fairly coherent. It's amazing how coherent he is at times. One

day he is talking about the DOW and the next minute he is lost in

a big fog totally withdrawn and disconnected from the rest of us.

I know I'm not much help Bertha. Just thought I'd share since we are

currently attempting to deal with the driving issue.

By the way, are your children guys? gals? both? Any grandbabies? BTW, I

read that you live in Staten Island. I used to live in NY-Rockland

County just across the Bergen County NJ border. (Pearl River to be

exact.) Now I live in southern California. My family is spread out all

over the place which is going to make helping my Dad very difficult. Dad

and Mom just moved to the Cleveland suburbs to be near my older sister.

They're 5 minutes away from her. My younger sister is still in Rockland,

NY and my brother lives in Dayton. So we are definitely geographically

challenged for dealing with Dad's illness.

Mandelbh@... wrote:

> ,

> I know this has nothing to do with LBD, but ... when those boys are

> ready for

> driving lessons, they will also have a sister to teach them...

> Now, to contribute something on topic: is there anyone out there

> concerned

> with getting a LO to stop driving?

> Bertha

>

>

>

[Guest guest]

Bertha

This really made me think of my dad before LBD...he used to smoke,

drive, write letters and send cards for all holidays. He used to cook,

call me, put jigsaw puzzles together. None of this has been mentioned

for almost 3 yrs. Must be the memory loss of Lewy. hmmmmm...makes me

sad in a sense to know all that my dad has lost.

Sandie

Des Moines, IA

[Guest guest]

My MIL (by the way, her name is Patty) stopped driving a few years ago when

she frequently became lost in her neighborhood. She once got very lost

after a shopping trip going home and she had asked these " older " gentleman

for some help. Thankfully, they were good people and helped her. I can't

help but think what if she had run into some " bad " people and what could

have happened to her. I am glad she gave driving up on her own.

Re:

In a message dated 8/5/02 9:29:11 PM Central Daylight Time, Mandelbh@...

writes:

> Now, to contribute something on topic: is there anyone out there concerned

> with getting a LO to stop driving?

This was a toughie, Bertha. Blessedly, I had the help of the Cognitive

Neurologist at s Hopkins, who told Bob that if he was a land

resident

the doctor would be required by law to inform the state that he didn't think

Bob should be driving. He reinforced this at semi-annual visits with the

use

of the spatial disorientation tests. I had to hide his vehicle through

juggling. If you REALLY want to know how I will answer, but trust me it was

a juggling act!! A painful one at that, mostly because it meant I had to

deceive Bob about bringing his vehicle back even when I KNEW he shouldn't be

driving. Very, very, very painful for all involved.

If you need the specifics of " mechanics " I have a lot of ideas gleaned from

others.

Cheryl

[Guest guest]

,

Just hang in there, and visit this site!

, you will adjust to this devastating news, believe me. I remember

years ago, when our children were in their teens and Harv, (my sick hubby), a

board certified child and general psychiatrist would say, in frustration,

" Don't ask ME to deal with those kids. What do I know? "

Bottom line: when it's your own family, it's a whole other ball game.

And for decades I have been worshipping the physical and occupational

therapists for all they have done for my MIL, for me, and for Harv. And now,

you, a director of rehab. are swept away by your own family's tragedy. Yes,

when it's your own family it IS another ball game. But you will do just fine.

Give yourself a little time. And visit here, too. Keep posting, please.

Bertha

[Guest guest]

, I am wondering whether you are aware that this is not a Christian support

group,

but a support group for caregivers of all nationalities, religions, and atheists

as well.

Please, would you keep your religious belief system private.....? I....and I

may be the

most outspoken, but certainly NOT the only one who feels this way....would be

most

grateful.....and I promise to keep MY belief systems to myself, as well.

Regarding your question as to how this could happen to such a good person, I

will share

with you what I know a priest to have said to a friend. He said, " Shit

happens. "

Mai-Liis

[Guest guest]

Mai Liis,

It is so interesting you find spirituality offensive. We have talked

about a lot of things here and no one reacted to any of it that I

remember. That particular email wasn't trying to convert anyone to

anything but a natural response from one person to another.

I recently received a couple of emails about not putting " God " into

schools, gov. or anywhere else. But kids can wear all color hair and

people can body tattoo any where and wear any kind of clothes. My

personal opinion is we had better start getting more tolerant of

spirituality. We are at war right now because of someone's spiritual

intolerance.

Whenever I start thinking about this stuff, I go back to my

responsibility for myself and if I don't like it, I can delete it. I

don't need to make sure others, no matter what they choice of

spirituality, not mention it, therefore it seems to me, I make them

responsible for me. Does that make sense?

We haven't checked anyone from talking about anything else here and I

don't agree that we should check another " s spirituality . This is my

opinion and maybe there are others who have a different opinion.

Donna

If you drink a diet soda with a candy bar, the calories in the candy bar

are canceled out by the diet soda.

[Guest guest]

It is so interesting you find spirituality offensive.

No, I do not find spirituality offensive at all!

Without spirituality....believing that someone

greater than us is in charge, while we do the footwork....

there is no way I could get through this. What I do object

to are use of this site for RELIGEOUS discussions....and yes,

of course I can delete, but if that becomes one of the main

focuses I won't find any help here. I wish I could find the

words to explain!!! I've had so many bad experiences with

folks who preached relion that it sets off all my buttons.

I was, however, wrong in not writing personally and trying to

explain better, as well as expressing myself more gently.

For this, I do ask for forgiveness....please? Mai-Liis

[Guest guest]

Dear Mai-Liis,

I don't know all the personalities and the players of this website

because I am new. But if I were to guess, I'd say that you are a very

strong, passionate individual who tends to call things as she sees them.

I can relate because I am the same way. I like people like that because

I always know where I stand and I don't have to worry about being

stabbed in the back. I think it's possible that you misunderstood where

I was coming from. I don't intend to use the LBD Caregiver website as a

platform to preach the Gospel. I respect everyone's individual rights to

have their own belief's. However, in this particular scenario, I was

reaching out to a fellow Christian who was having trouble and blaming

God. I was sincerely trying to help her, not win her over. In fact,

typing those words was cathartic for me.

I intended to comfort , but I actually comforted myself because I

was reminded of a few things that I need to keep in mind too.

When you ask me to leave religion out of things, I can only do that to a

certain extent. I'm not here to try and brainwash people or convert

everyone to Christianity. I am here as a person who needs help and

wants to help. And the first place I look for as a human being in times

of suffering, is to God. For me, my Christianity is not as simple as

" wearing a sweater " that I can take off and leave at home whan it's

politically correct. Being Christian is a major part of my life. In fact

to a large extent, it defines me. I hope that you can respect that. And

I wish you nothing but the best.

Mai-Liis wrote:

>

>

> It is so interesting you find spirituality offensive.

>

> No, I do not find spirituality offensive at all!

> Without spirituality....believing that someone

> greater than us is in charge, while we do the footwork....

> there is no way I could get through this. What I do object

> to are use of this site for RELIGEOUS discussions....and yes,

> of course I can delete, but if that becomes one of the main

> focuses I won't find any help here. I wish I could find the

> words to explain!!! I've had so many bad experiences with

> folks who preached relion that it sets off all my buttons.

> I was, however, wrong in not writing personally and trying to

> explain better, as well as expressing myself more gently.

> For this, I do ask for forgiveness....please? Mai-Liis

>

>

>

[Guest guest]

,

where at in California do you live. I live in ez.

................ Shirley

_________________________________________________________________

Join the world’s largest e-mail service with MSN Hotmail.

http://www.hotmail.com

[Guest guest]

I live in Orange County...Portola Hills. It's between Irvine and Mission

Viejo. I'm not sure where ez is. Is that in LA County? I've only

been here for 6 years. I started in NY til 1988, then in MD for 7 years,

then NW Indiana (Chicago suburb) for 1 year, then here.

[Guest guest]

I'm in Mobile now, but not until spending my first 40 yrs on the SF

peninsula, most recently in San Mateo, not too far from Portola VALLEY.

Hardly know southern California. Believe ez is north of the Oakland

complex? Y'all stop making me homesick, would you please? ;-) Cheryl

[Guest guest]

Oh, I live about 400 miles from you. In the San Francisco Bay area. I did

work in LA a few times in the late 70's for two weeks at a time in Poente

Hills Mall and in Fox Hills Mall and in Riverside. I have some old friends

who live in Mission Viejo. Shirley

>

>Reply-To: LBDcaregivers

>To: LBDcaregivers

>Subject: Re:

>Date: Thu, 08 Aug 2002 08:44:01 -0700

>

>I live in Orange County...Portola Hills. It's between Irvine and Mission

>Viejo. I'm not sure where ez is. Is that in LA County? I've only

>been here for 6 years. I started in NY til 1988, then in MD for 7 years,

>then NW Indiana (Chicago suburb) for 1 year, then here.

>

>

>

_________________________________________________________________

Send and receive Hotmail on your mobile device: http://mobile.msn.com

[Guest guest]

I was worried about you. I read your first post then didn't see

anything else from you. Sounds like you have a very good handle on this

so far. Taking this day by day. I can understand how the future scares

you, and the past hurts. Like I told , love your dad today for the

man you have known and the rest will fall into place. I have been doing

this with my dad and this disease for almost 5 yrs. At times it is a

heavy load to carry and at times things seem a little easier, but I

still have made it through. You will too!! You are so lucky to have so

many siblings and to be able to for a support group. I would love to

borrow some of your siblings, including you, to have on my team. My

team is very small and limited, yet there is still hope. Keep in touch,

and take care!! Will say an extra prayer for you!

Sandie

Des Moines, IA

[Guest guest]

I was worried about you. I read your first post then didn't see

anything else from you. Sounds like you have a very good handle on this

so far. Taking this day by day. I can understand how the future scares

you, and the past hurts. Like I told , love your dad today for the

man you have known and the rest will fall into place. I have been doing

this with my dad and this disease for almost 5 yrs. At times it is a

heavy load to carry and at times things seem a little easier, but I

still have made it through. You will too!! You are so lucky to have so

many siblings and to be able to for a support group. I would love to

borrow some of your siblings, including you, to have on my team. My

team is very small and limited, yet there is still hope. Keep in touch,

and take care!! Will say an extra prayer for you!

Sandie

Des Moines, IA

[Guest guest]

Hello to all.

I've been quiet awhile. School for teachers has started and it's so

hard to find time to get to the computer to read the many messages

accumulated. I gave up my self-contained 4th grade classroom last

May after many years of teaching. It was with great sadness but I

felt it was time because of the many duties at home that made me feel

I was giving less than 100 percent to my kiddos. I've taken a part

time position at the same school of working with 1, 2 or 3 children

with special needs. It won't have all the responsibilities and take

home work of a full classroom teacher. I needed the weaning away

period since I just can't walk away from teaching just yet. Lou has

his same sitter/caregiver and we'll see how it goes.

I feel for those that don't get the rest they need during the nite.

We have those nites here as well. Lou does get up a few times to use

the bathroom, sometimes needing help. He also has those nites where

he is up every few minutes. I admit to " losing it " , all patience

going out the window, begging him to lie down and not roam. I never

know or understand why some nites are more peaceful than others. He

does take Aricept 10mg and Seroquel 25mg near bedtime. Guess what I

feel like at work on those bad nights? I need to be Superwoman to

keep my cool and not snap many times.

I am very sorry to read of the three newly diagnosed but am glad that

you have found this site and hope it can be a source of comfort and

information. Lou has been struggling with the PD diagnosis for 14

years with the LBD added 3 years ago.

I was not upset by comforting as one Catholic to another

(I'm not Catholic) but thought Eve had a good idea about these topics

for the future. But I think some of us struggle with knowing what

the big plan is here. If I was to become stronger by all this...boy

am I bulked up by now! But at my age slowly starting to crumble.

The best to all of you and I'll be out here listening when I can.

Mik

[Guest guest]

In a message dated 9/13/02 8:00:26 PM Central Daylight Time,

GKRBH@... writes:

>

<HUGGGGGGGGGGGGGGGGGGSSSSSSS> I hope you realized how much of a super mom

you REALLY are. You need to back off some, keep looking & researching &

working out the best thing for Hannah in your mind but, understand that you

may have went as far as you can for " now. " I know your standing on top

looking over the edge right now. You've got to take better care of yourself,

delegate & supervise at the present time. It's not easy to do that I know

but, if you run yourself into the ground, it won't be the best thing for that

most precious child. I've learned in this life, when door shuts, a window

opens. They are hard to find at times but, they are there. ;-) Just want you

to know that I LOVE YOU, & hang in there & pull yourself together, I know

your just hanging by a thread.

K.

[Guest guest]

In a message dated 9/13/02 8:00:26 PM Central Daylight Time,

GKRBH@... writes:

>

<HUGGGGGGGGGGGGGGGGGGSSSSSSS> I hope you realized how much of a super mom

you REALLY are. You need to back off some, keep looking & researching &

working out the best thing for Hannah in your mind but, understand that you

may have went as far as you can for " now. " I know your standing on top

looking over the edge right now. You've got to take better care of yourself,

delegate & supervise at the present time. It's not easy to do that I know

but, if you run yourself into the ground, it won't be the best thing for that

most precious child. I've learned in this life, when door shuts, a window

opens. They are hard to find at times but, they are there. ;-) Just want you

to know that I LOVE YOU, & hang in there & pull yourself together, I know

your just hanging by a thread.

K.

[Guest guest]

Doug and Carolyn Petti wrote:

Hi Carolyn,

I only found out two months ago that my son Timon 5 years has PMG. Two

years ago a genetic test was done, don´t ask me which one, and it was

normall. At this moment I actually don´t really ask myself the question

why Timon has PMG and how he got it. At some point during the pregnancy

something obviously went wrong. I don´t think it is really necesarry to

find out what went wrong or why because there is nothing I can do about

it. At this point I want to find out what I can do now to help Timon. I

spoke to my doc. about it and think that it is not necessary to find out

if it is genetic until Timon might want kids of his own. Maby I feel

like this because I have two more children, Caspar 3 years and Sophie

nearly 2, who seem to be all right. But I do wonder why you want to know

what the cause is?

Take care,

Bianca

> Hello all,

>

> I am very guilty of not keeping up on the posts but I do like to read

> and try to keep up on everything going on. Firstly, to all that are

> having bad days and struggling , my heart goes out to you and to all

> that are having babies, congratulations!!! That is wonderful news.

>

> What I would like to talk about is my never ending search for causes

> of my daughter's PMG. Especially , since we never found out the cause

> in our case. We have tried every genetic test available to us and

> looked at the most common viruses. Everything is negative and it is

> time they gave up. That is how they (the docs) feel. At this point,

> I have asked to have an Epstein Barr virus done and it is the only

> that has come back positive. We think I may have contracted the virus

> while I was pregnant. Since most people contract this as a young

> child or teen, there is no significant study on EBV and pregnancy.

> This virus is part of the mononucleosis family, as is CMV , herpes etc....

>

> So I just wanted to let everyone know my feelings on this is that it

> may have been an exposure. I hope what this will do is help anyone

> else out there, maybe there was an outside exposure during pregnancy

> ? The doctors first impression was that a virus could have been

> involved. So I will continue with this and keep you posted and I hope

> if not for me, that I would be able to help others.

>

> I will keep you posted

>

> Carolyn mom to angel and sister Ciara

>

>

>

>

>

>

>

[Guest guest]

Doug and Carolyn Petti wrote:

Hi Carolyn,

I only found out two months ago that my son Timon 5 years has PMG. Two

years ago a genetic test was done, don´t ask me which one, and it was

normall. At this moment I actually don´t really ask myself the question

why Timon has PMG and how he got it. At some point during the pregnancy

something obviously went wrong. I don´t think it is really necesarry to

find out what went wrong or why because there is nothing I can do about

it. At this point I want to find out what I can do now to help Timon. I

spoke to my doc. about it and think that it is not necessary to find out

if it is genetic until Timon might want kids of his own. Maby I feel

like this because I have two more children, Caspar 3 years and Sophie

nearly 2, who seem to be all right. But I do wonder why you want to know

what the cause is?

Take care,

Bianca

> Hello all,

>

> I am very guilty of not keeping up on the posts but I do like to read

> and try to keep up on everything going on. Firstly, to all that are

> having bad days and struggling , my heart goes out to you and to all

> that are having babies, congratulations!!! That is wonderful news.

>

> What I would like to talk about is my never ending search for causes

> of my daughter's PMG. Especially , since we never found out the cause

> in our case. We have tried every genetic test available to us and

> looked at the most common viruses. Everything is negative and it is

> time they gave up. That is how they (the docs) feel. At this point,

> I have asked to have an Epstein Barr virus done and it is the only

> that has come back positive. We think I may have contracted the virus

> while I was pregnant. Since most people contract this as a young

> child or teen, there is no significant study on EBV and pregnancy.

> This virus is part of the mononucleosis family, as is CMV , herpes etc....

>

> So I just wanted to let everyone know my feelings on this is that it

> may have been an exposure. I hope what this will do is help anyone

> else out there, maybe there was an outside exposure during pregnancy

> ? The doctors first impression was that a virus could have been

> involved. So I will continue with this and keep you posted and I hope

> if not for me, that I would be able to help others.

>

> I will keep you posted

>

> Carolyn mom to angel and sister Ciara

>

>

>

>

>

>

>

[Guest guest]

I just wanted to respond about why some people want to know the cause

of PMG. Yes, some of it is just curiosity, but also my husband and I

have many family members who have not had children (our brothers and

sisters)and they are very concerned now since we have had two

children with brain disorders. I was seldom concerned after having

my first child because by the time we found out about her brain

disorder we had already had a second child (who is " normal " ) and the

doctors told us it was most likely not genetic. Now after having a

second child with a brain disorder, we still don't know if it is

genetic, but something caused the PMG and I just think that if it can

help our family, or some other family to find a reason it will be

worth it. Anyway, I don't know about the other families, but that is

why we are continuing the search to why.

Missi bAranko

> Hi Carolyn,

>

> I only found out two months ago that my son Timon 5 years has PMG.

Two

> years ago a genetic test was done, don´t ask me which one, and it

was

> normall. At this moment I actually don´t really ask myself the

question

> why Timon has PMG and how he got it. At some point during the

pregnancy

> something obviously went wrong. I don´t think it is really

necesarry to

> find out what went wrong or why because there is nothing I can do

about

> it. At this point I want to find out what I can do now to help

Timon. I

> spoke to my doc. about it and think that it is not necessary to

find out

> if it is genetic until Timon might want kids of his own. Maby I

feel

> like this because I have two more children, Caspar 3 years and

Sophie

> nearly 2, who seem to be all right. But I do wonder why you want to

know

> what the cause is?

>

> Take care,

> Bianca

>

> > Hello all,

> >

> > I am very guilty of not keeping up on the posts but I do like to

read

> > and try to keep up on everything going on. Firstly, to all that

are

> > having bad days and struggling , my heart goes out to you and to

all

> > that are having babies, congratulations!!! That is wonderful

news.

> >

> > What I would like to talk about is my never ending search for

causes

> > of my daughter's PMG. Especially , since we never found out the

cause

> > in our case. We have tried every genetic test available to us

and

> > looked at the most common viruses. Everything is negative and it

is

> > time they gave up. That is how they (the docs) feel. At this

point,

> > I have asked to have an Epstein Barr virus done and it is the

only

> > that has come back positive. We think I may have contracted the

virus

> > while I was pregnant. Since most people contract this as a young

> > child or teen, there is no significant study on EBV and

pregnancy.

> > This virus is part of the mononucleosis family, as is CMV ,

herpes etc....

> >

> > So I just wanted to let everyone know my feelings on this is that

it

> > may have been an exposure. I hope what this will do is help

anyone

> > else out there, maybe there was an outside exposure during

pregnancy

> > ? The doctors first impression was that a virus could have been

> > involved. So I will continue with this and keep you posted and I

hope

> > if not for me, that I would be able to help others.

> >

> > I will keep you posted

> >

> > Carolyn mom to angel and sister Ciara

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

My wife and i are in a similar situation, we had one

" normal " child before austin, and some day, would

like another child. We've been tested genetically, and

family history's traced, with no sign of any problems

on either side. My wifes brothers and sisters are

still to have children also, those that have had them,

have no problems. My wife was on chlomed to help her

get pregnant, and she actually lost about 12kg early

in the pregnancy. Otherwise it was a normal pregnancy.

No smoking nor drinking etc.

Doctors have told us, we should be ok to have more

kids, but they would closely monitior the pregnancy,

if we did.

& . Parents to Emerson (4.2) and Austin

(11mnths) pmg, etc. Glg, Aust.

--- missibaranko wrote: > I

just wanted to respond about why some people want

> to know the cause

> of PMG. Yes, some of it is just curiosity, but also

> my husband and I

> have many family members who have not had children

> (our brothers and

> sisters)and they are very concerned now since we

> have had two

> children with brain disorders. I was seldom

> concerned after having

> my first child because by the time we found out

> about her brain

> disorder we had already had a second child (who is

> " normal " ) and the

> doctors told us it was most likely not genetic. Now

> after having a

> second child with a brain disorder, we still don't

> know if it is

> genetic, but something caused the PMG and I just

> think that if it can

> help our family, or some other family to find a

> reason it will be

> worth it. Anyway, I don't know about the other

> families, but that is

> why we are continuing the search to why.

>

>

> Missi bAranko

>

>

>

>

> > Hi Carolyn,

> >

> > I only found out two months ago that my son Timon

> 5 years has PMG.

> Two

> > years ago a genetic test was done, don´t ask me

> which one, and it

> was

> > normall. At this moment I actually don´t really

> ask myself the

> question

> > why Timon has PMG and how he got it. At some point

> during the

> pregnancy

> > something obviously went wrong. I don´t think it

> is really

> necesarry to

> > find out what went wrong or why because there is

> nothing I can do

> about

> > it. At this point I want to find out what I can do

> now to help

> Timon. I

> > spoke to my doc. about it and think that it is not

> necessary to

> find out

> > if it is genetic until Timon might want kids of

> his own. Maby I

> feel

> > like this because I have two more children, Caspar

> 3 years and

> Sophie

> > nearly 2, who seem to be all right. But I do

> wonder why you want to

> know

> > what the cause is?

> >

> > Take care,

> > Bianca

> >

> > > Hello all,

> > >

> > > I am very guilty of not keeping up on the posts

> but I do like to

> read

> > > and try to keep up on everything going on.

> Firstly, to all that

> are

> > > having bad days and struggling , my heart goes

> out to you and to

> all

> > > that are having babies, congratulations!!! That

> is wonderful

> news.

> > >

> > > What I would like to talk about is my never

> ending search for

> causes

> > > of my daughter's PMG. Especially , since we

> never found out the

> cause

> > > in our case. We have tried every genetic test

> available to us

> and

> > > looked at the most common viruses. Everything

> is negative and it

> is

> > > time they gave up. That is how they (the docs)

> feel. At this

> point,

> > > I have asked to have an Epstein Barr virus done

> and it is the

> only

> > > that has come back positive. We think I may

> have contracted the

> virus

> > > while I was pregnant. Since most people

> contract this as a young

> > > child or teen, there is no significant study on

> EBV and

> pregnancy.

> > > This virus is part of the mononucleosis family,

> as is CMV ,

> herpes etc....

> > >

> > > So I just wanted to let everyone know my

> feelings on this is that

> it

> > > may have been an exposure. I hope what this

> will do is help

> anyone

> > > else out there, maybe there was an outside

> exposure during

> pregnancy

> > > ? The doctors first impression was that a virus

> could have been

> > > involved. So I will continue with this and keep

> you posted and I

> hope

> > > if not for me, that I would be able to help

> others.

> > >

> > > I will keep you posted

> > >

> > > Carolyn mom to angel and sister Ciara

> > >

> > >

> > >

> > >

> > >

> > >

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

> removed]

> > >

> > >

> > >

[Guest guest]

Marie,

At the get-together Dr. Dobyns and his team of doctors are there and do

exams and give talks during the day and then in the evening everyone gets

together for a buffet style dinner and have a DJ and it is a really, really

nice chance for everyone to get together. I still have pictures from the

last get together on our family web page. Check them out.

and Kennedy(3yrs,pmg)

http://www.geocities.com/kenjenjennings/

>

>Reply-To: polymicrogyria

>To: polymicrogyria

>Subject: Date: Mon, 23 Sep 2002 21:50:26 +0100

>

>Hi

>Could you send me details of the get together - is this like a conference

>with

>Dr Dobyns or similar attending or is it more of a social gathering? I live

>in Ireland but would consider travelling.

>

>Marie

>(mum to almost 3)

>

>*************************** ADVERTISEMENT ******************************

>rsvp.ie, Ireland's most popular online dating service. Make it Happen!

>http://www.rsvp.ie

>

>

>

>

>

[Guest guest]

Marie,

At the get-together Dr. Dobyns and his team of doctors are there and do

exams and give talks during the day and then in the evening everyone gets

together for a buffet style dinner and have a DJ and it is a really, really

nice chance for everyone to get together. I still have pictures from the

last get together on our family web page. Check them out.

and Kennedy(3yrs,pmg)

http://www.geocities.com/kenjenjennings/

>

>Reply-To: polymicrogyria

>To: polymicrogyria

>Subject: Date: Mon, 23 Sep 2002 21:50:26 +0100

>

>Hi

>Could you send me details of the get together - is this like a conference

>with

>Dr Dobyns or similar attending or is it more of a social gathering? I live

>in Ireland but would consider travelling.

>

>Marie

>(mum to almost 3)

>

>*************************** ADVERTISEMENT ******************************

>rsvp.ie, Ireland's most popular online dating service. Make it Happen!

>http://www.rsvp.ie

>

>

>

>

>

[Guest guest]

-

My dad just passed away Sept. 20 - and it still seems so unreal. I am

so sorry for your loss. My heart truly goes out to you! May I ask you

a question? Did your dad every take any of the neuroleptics...like

Ativan, Haldol, Zyprexa?

The reason I ask is my dad had taken Ativan, and later Zyprexa and my

intuition tells me those drugs progressed his disease.

Please forgive me for asking, and if you chose not to answer, I will

understand. Even though I had some time to think I was preparing for my

dads passing, I have found myself in a fog, just floundering around

feeling like I don't quite fit in.

I will say a prayer of peace for you tonight ...

Sandie

Des Moines, IA