Re: HOW OBVIOUS LBD IS!!!

[Guest guest]

carol,

small world i have met several others in doctors waiting rooms, who hav e a

family member with lbd.

happy birthday to mom!!!! hugs, sharon m

---- " carol.incognito " wrote:

Hi everyone,

I have a very interesting story about what happened at my Mom's foot

doctor this morning. We got there and the doctor was running over an

hour late, due to an emergency, so we had to sit and wait in the

waiting room, naturally. While we were sitting there I noticed this

woman across from us, around my age, and she kept looking at us.

Well after about 15 minutes I got up to stretch and went down the

hall to get a list of her medicines that I had printed out at her PC

doctor. When I came back that woman was sitting next to the spot

where I was sitting. So there was the woman, myself and then Mom. I

smiled at her and she said to me, " I'm sorry for listening, but I

just lost my Mother and I was listening to you talking to your Mother

and I am so sad I could just cry, wishing I had my Mother here with

me " . I said I was very sorry and she seemed like she wanted to talk

so I asked her what her Mom passed from. She then looked at me with

this strange look and said, " Dementia, with Lewy Body " ...I almost

fell off my seat...I nodded to her and gave her the eyes that she

knew what I meant..so that my Mom wouldn't see or hear anything. She

said to me, " I knew it, because I was listening to the things she was

saying and how she was talking and she sounded just like my Mother "

I was floored...we continued to talk as Mother was just nodding and

looking out the window. I gave her a LBD brochure and she said I was

the first person that she ever met that knew what LBD was and she was

so happy. We continued to talk for about another 45 minutes off and

on, inbetween Mom and along with Mom. We were seeing the same Doctor

and we were in rooms across the hall...so while the Doctor was

working on Mom's feet I talked to her some more...and she told me the

details of her Mother's passing...We kissed and hugged and it was

just an instant bond between us...she wished me luck and walked away

with tears in her eyes because she said she knew the pain that was to

come...and she said I made her feel better because I helped her

realize that it would be selfish to want to keep her Mom in the pain

that she was in. She agreed but she is still angry, naturally, that

she had to get it at all...She was only 72 when she passed...and now

her Dad is not doing well...she said her Mom was always great and had

not one health problem or took one medication until she retired...and

then B A N G...this darn disease...

Well, I thought it was an interesting story because she still has a

primary care physician that calls it Dementia with possible LB...and

here's a stranger that knew from watching and listening for an hour

and she knew it absolutely...of course me, I go in and out of

denial...but, thanks to this group the links and the stories and the

CD and everything I had read and learned...my denial stage, I think

has finally passed me for good.

My best,

Carol Incog

Tomorrow is Mom's 79 Birthday...the 14th

--

Daugher of Leonard, diag May 2004, had lbd since 1993, had hip surgery from fall

7/05, aspiration pneumonia 7/05 with pulmonary embolyis, had aspiration

pneumonia and uti 8/05, died of blood pressure drop on 9/25/05,

may he rest in peace with his mom and dad,

a smile a day keeps the meanies away

[Guest guest]

Thank you for the birthday wishes Sharon...

I think the realy funny part was that he was a foot doctor!!! :-)

> Hi everyone,

> I have a very interesting story about what happened at my Mom's

foot

> doctor this morning. We got there and the doctor was running over

an

> hour late, due to an emergency, so we had to sit and wait in the

> waiting room, naturally. While we were sitting there I noticed

this

> woman across from us, around my age, and she kept looking at us.

> Well after about 15 minutes I got up to stretch and went down the

> hall to get a list of her medicines that I had printed out at her

PC

> doctor. When I came back that woman was sitting next to the spot

> where I was sitting. So there was the woman, myself and then Mom.

I

> smiled at her and she said to me, " I'm sorry for listening, but I

> just lost my Mother and I was listening to you talking to your

Mother

> and I am so sad I could just cry, wishing I had my Mother here with

> me " . I said I was very sorry and she seemed like she wanted to

talk

> so I asked her what her Mom passed from. She then looked at me

with

> this strange look and said, " Dementia, with Lewy Body " ...I almost

> fell off my seat...I nodded to her and gave her the eyes that she

> knew what I meant..so that my Mom wouldn't see or hear anything.

She

> said to me, " I knew it, because I was listening to the things she

was

> saying and how she was talking and she sounded just like my

Mother "

> I was floored...we continued to talk as Mother was just nodding and

> looking out the window. I gave her a LBD brochure and she said I

was

> the first person that she ever met that knew what LBD was and she

was

> so happy. We continued to talk for about another 45 minutes off

and

> on, inbetween Mom and along with Mom. We were seeing the same

Doctor

> and we were in rooms across the hall...so while the Doctor was

> working on Mom's feet I talked to her some more...and she told me

the

> details of her Mother's passing...We kissed and hugged and it was

> just an instant bond between us...she wished me luck and walked

away

> with tears in her eyes because she said she knew the pain that was

to

> come...and she said I made her feel better because I helped her

> realize that it would be selfish to want to keep her Mom in the

pain

> that she was in. She agreed but she is still angry, naturally,

that

> she had to get it at all...She was only 72 when she passed...and

now

> her Dad is not doing well...she said her Mom was always great and

had

> not one health problem or took one medication until she

retired...and

> then B A N G...this darn disease...

> Well, I thought it was an interesting story because she still has a

> primary care physician that calls it Dementia with possible

LB...and

> here's a stranger that knew from watching and listening for an hour

> and she knew it absolutely...of course me, I go in and out of

> denial...but, thanks to this group the links and the stories and

the

> CD and everything I had read and learned...my denial stage, I think

> has finally passed me for good.

> My best,

> Carol Incog

> Tomorrow is Mom's 79 Birthday...the 14th

>

>

>

>

> --

> Daugher of Leonard, diag May 2004, had lbd since 1993, had hip

surgery from fall 7/05, aspiration pneumonia 7/05 with pulmonary

embolyis, had aspiration pneumonia and uti 8/05, died of blood

pressure drop on 9/25/05,

> may he rest in peace with his mom and dad,

> a smile a day keeps the meanies away

>

[Guest guest]

Carol

Wish your Mom a VERY HAPPY BIRTHDAY from me.

Jacqui in Florida

[Guest guest]

Hi

Congradulations on the new baby, Malinda. How wonderful to have a new little

one in your life.

Sorry about the Gall Bladder. Had to have mine out and it was no fun. I hope

you recover real soon.

Take care and warm hugs,

Jacqui from Florida

[Guest guest]

I spoke at a Wellness Works - a health information area at our local mall this

past summer regarding services/Choices available to the elderly in our area-

and a couple that attended made me inquire. They wanted to move somewhere

before wintertime. The man made reference to the fact that he had horses to

tend to and then said " I only have 3, but I always think that I have 30 " , and

the late spring snowstorm that we had this year was just awful for him to deal

with due to that. Later when they talked with me I asked what he suffered

from if he did not mind my asking, and it was LBD.

I know that I have not written anything recently either, and have had a hard

time finding time to keep up as we have a new baby in the house! She is named

Malinda after my father (Marvin) and my husband's father (Linus) - who is still

alive. So, I am back to being fatigued like many of you caring for the older

generation. I was in the hospital 9 days and am returning this week to get my

gall bladder out - which is part of the reason I was gone 9 days the first

time. We did not know that I had trouble with that. Such fun....

Must go now as the little one is needing to nurse - best wishes to all of you

for the coming holiday season.

Renae, daughter of Marvin, diagnosed 10-31-05, deceased 11-07-05 We just had

our first year anniversary without him.

" carol.incognito " wrote:

Hi everyone,

I have a very interesting story about what happened at my Mom's foot

doctor this morning. We got there and the doctor was running over an

hour late, due to an emergency, so we had to sit and wait in the

waiting room, naturally. While we were sitting there I noticed this

woman across from us, around my age, and she kept looking at us.

Well after about 15 minutes I got up to stretch and went down the

hall to get a list of her medicines that I had printed out at her PC

doctor. When I came back that woman was sitting next to the spot

where I was sitting. So there was the woman, myself and then Mom. I

smiled at her and she said to me, " I'm sorry for listening, but I

just lost my Mother and I was listening to you talking to your Mother

and I am so sad I could just cry, wishing I had my Mother here with

me " . I said I was very sorry and she seemed like she wanted to talk

so I asked her what her Mom passed from. She then looked at me with

this strange look and said, " Dementia, with Lewy Body " ...I almost

fell off my seat...I nodded to her and gave her the eyes that she

knew what I meant..so that my Mom wouldn't see or hear anything. She

said to me, " I knew it, because I was listening to the things she was

saying and how she was talking and she sounded just like my Mother "

I was floored...we continued to talk as Mother was just nodding and

looking out the window. I gave her a LBD brochure and she said I was

the first person that she ever met that knew what LBD was and she was

so happy. We continued to talk for about another 45 minutes off and

on, inbetween Mom and along with Mom. We were seeing the same Doctor

and we were in rooms across the hall...so while the Doctor was

working on Mom's feet I talked to her some more...and she told me the

details of her Mother's passing...We kissed and hugged and it was

just an instant bond between us...she wished me luck and walked away

with tears in her eyes because she said she knew the pain that was to

come...and she said I made her feel better because I helped her

realize that it would be selfish to want to keep her Mom in the pain

that she was in. She agreed but she is still angry, naturally, that

she had to get it at all...She was only 72 when she passed...and now

her Dad is not doing well...she said her Mom was always great and had

not one health problem or took one medication until she retired...and

then B A N G...this darn disease...

Well, I thought it was an interesting story because she still has a

primary care physician that calls it Dementia with possible LB...and

here's a stranger that knew from watching and listening for an hour

and she knew it absolutely...of course me, I go in and out of

denial...but, thanks to this group the links and the stories and the

CD and everything I had read and learned...my denial stage, I think

has finally passed me for good.

My best,

Carol Incog

Tomorrow is Mom's 79 Birthday...the 14th

---------------------------------

Want to start your own business? Learn how on Yahoo! Small Business.

[Guest guest]

Carol-Incoog,

It is so strange when we do find people out of no where. My friend was telling

me about her Dad. She knew about Mom. And I asked if she thought he might have

LBD. She said, " Oh, no, the MD had said it was AD. " A week later she called

me specifically before she talked to anyone else. They had taken her Dad to a

specialist and that MD said LBD.

I knew it without even seeing him just from what she was saying.

Happy Birthday to your Mom.

Hugs.

Donna R

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in

a nh.

She was almost 89 when she died in '02. No dx other than mine.

HOW OBVIOUS LBD IS!!!

Hi everyone,

I have a very interesting story about what happened at my Mom's foot

doctor this morning. We got there and the doctor was running over an

hour late, due to an emergency, so we had to sit and wait in the

waiting room, naturally. While we were sitting there I noticed this

woman across from us, around my age, and she kept looking at us.

Well after about 15 minutes I got up to stretch and went down the

hall to get a list of her medicines that I had printed out at her PC

doctor. When I came back that woman was sitting next to the spot

where I was sitting. So there was the woman, myself and then Mom. I

smiled at her and she said to me, " I'm sorry for listening, but I

just lost my Mother and I was listening to you talking to your Mother

and I am so sad I could just cry, wishing I had my Mother here with

me " . I said I was very sorry and she seemed like she wanted to talk

so I asked her what her Mom passed from. She then looked at me with

this strange look and said, " Dementia, with Lewy Body " ...I almost

fell off my seat...I nodded to her and gave her the eyes that she

knew what I meant..so that my Mom wouldn't see or hear anything. She

said to me, " I knew it, because I was listening to the things she was

saying and how she was talking and she sounded just like my Mother "

I was floored...we continued to talk as Mother was just nodding and

looking out the window. I gave her a LBD brochure and she said I was

the first person that she ever met that knew what LBD was and she was

so happy. We continued to talk for about another 45 minutes off and

on, inbetween Mom and along with Mom. We were seeing the same Doctor

and we were in rooms across the hall...so while the Doctor was

working on Mom's feet I talked to her some more...and she told me the

details of her Mother's passing...We kissed and hugged and it was

just an instant bond between us...she wished me luck and walked away

with tears in her eyes because she said she knew the pain that was to

come...and she said I made her feel better because I helped her

realize that it would be selfish to want to keep her Mom in the pain

that she was in. She agreed but she is still angry, naturally, that

she had to get it at all...She was only 72 when she passed...and now

her Dad is not doing well...she said her Mom was always great and had

not one health problem or took one medication until she retired...and

then B A N G...this darn disease...

Well, I thought it was an interesting story because she still has a

primary care physician that calls it Dementia with possible LB...and

here's a stranger that knew from watching and listening for an hour

and she knew it absolutely...of course me, I go in and out of

denial...but, thanks to this group the links and the stories and the

CD and everything I had read and learned...my denial stage, I think

has finally passed me for good.

My best,

Carol Incog

Tomorrow is Mom's 79 Birthday...the 14th

[Guest guest]

Talk about coincidence, or as some in the group have

said " Godincidence. I'm so glad both of you found

each other and learned so much about yourselves and

this dreaded illness.

Happy Birthday to your mother, too.

--- " carol.incognito "

wrote:

> Hi everyone,

> I have a very interesting story about what happened

> at my Mom's foot

> doctor this morning. We got there and the doctor

> was running over an

> hour late, due to an emergency, so we had to sit and

> wait in the

> waiting room, naturally. While we were sitting

> there I noticed this

> woman across from us, around my age, and she kept

> looking at us.

> Well after about 15 minutes I got up to stretch and

> went down the

> hall to get a list of her medicines that I had

> printed out at her PC

> doctor. When I came back that woman was sitting

> next to the spot

> where I was sitting. So there was the woman, myself

> and then Mom. I

> smiled at her and she said to me, " I'm sorry for

> listening, but I

> just lost my Mother and I was listening to you

> talking to your Mother

> and I am so sad I could just cry, wishing I had my

> Mother here with

> me " . I said I was very sorry and she seemed like

> she wanted to talk

> so I asked her what her Mom passed from. She then

> looked at me with

> this strange look and said, " Dementia, with Lewy

> Body " ...I almost

> fell off my seat...I nodded to her and gave her the

> eyes that she

> knew what I meant..so that my Mom wouldn't see or

> hear anything. She

> said to me, " I knew it, because I was listening to

> the things she was

> saying and how she was talking and she sounded just

> like my Mother "

> I was floored...we continued to talk as Mother was

> just nodding and

> looking out the window. I gave her a LBD brochure

> and she said I was

> the first person that she ever met that knew what

> LBD was and she was

> so happy. We continued to talk for about another 45

> minutes off and

> on, inbetween Mom and along with Mom. We were

> seeing the same Doctor

> and we were in rooms across the hall...so while the

> Doctor was

> working on Mom's feet I talked to her some

> more...and she told me the

> details of her Mother's passing...We kissed and

> hugged and it was

> just an instant bond between us...she wished me luck

> and walked away

> with tears in her eyes because she said she knew the

> pain that was to

> come...and she said I made her feel better because I

> helped her

> realize that it would be selfish to want to keep her

> Mom in the pain

> that she was in. She agreed but she is still angry,

> naturally, that

> she had to get it at all...She was only 72 when she

> passed...and now

> her Dad is not doing well...she said her Mom was

> always great and had

> not one health problem or took one medication until

> she retired...and

> then B A N G...this darn disease...

> Well, I thought it was an interesting story because

> she still has a

> primary care physician that calls it Dementia with

> possible LB...and

> here's a stranger that knew from watching and

> listening for an hour

> and she knew it absolutely...of course me, I go in

> and out of

> denial...but, thanks to this group the links and the

> stories and the

> CD and everything I had read and learned...my denial

> stage, I think

> has finally passed me for good.

> My best,

> Carol Incog

> Tomorrow is Mom's 79 Birthday...the 14th

>

>

>

>

________________________________________________________________________________\

____

Cheap talk?

Check out Yahoo! Messenger's low PC-to-Phone call rates.

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[Guest guest]

Carol,

It does seem pretty obvious to us that have lived with Lewy. It made me a

bit angry that that my mom had seen nearly a dozen different doctors before one

finally suggested that I read up on LBD and wrote out the words for me.

LBD may not be so unusual: maybe, it is just being mis-diagnosed.

I have spoken with five or six people in the last year that have loved ones

with " Parkinsons " without much tremors, but they also have some dementia, and

halucinations.

Dann

" carol.incognito " wrote:

[Guest guest]

I certainly agree with Dann!

Donna R

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in

a nh.

She was almost 89 when she died in '02. No dx other than mine.

Re: HOW OBVIOUS LBD IS!!!

Carol,

It does seem pretty obvious to us that have lived with Lewy. It made me a

bit angry that that my mom had seen nearly a dozen different doctors before one

finally suggested that I read up on LBD and wrote out the words for me.

LBD may not be so unusual: maybe, it is just being mis-diagnosed.

I have spoken with five or six people in the last year that have loved ones

with " Parkinsons " without much tremors, but they also have some dementia, and

halucinations.

Dann

" carol.incognito " wrote:

[Guest guest]

Happy Birthday to your mom. I hope the day was special for the two of you.

Kath

" carol.incognito " wrote:

Hi everyone,

I have a very interesting story about what happened at my Mom's foot

doctor this morning. We got there and the doctor was running over an

hour late, due to an emergency, so we had to sit and wait in the

waiting room, naturally. While we were sitting there I noticed this

woman across from us, around my age, and she kept looking at us.

Well after about 15 minutes I got up to stretch and went down the

hall to get a list of her medicines that I had printed out at her PC

doctor. When I came back that woman was sitting next to the spot

where I was sitting. So there was the woman, myself and then Mom. I

smiled at her and she said to me, " I'm sorry for listening, but I

just lost my Mother and I was listening to you talking to your Mother

and I am so sad I could just cry, wishing I had my Mother here with

me " . I said I was very sorry and she seemed like she wanted to talk

so I asked her what her Mom passed from. She then looked at me with

this strange look and said, " Dementia, with Lewy Body " ...I almost

fell off my seat...I nodded to her and gave her the eyes that she

knew what I meant..so that my Mom wouldn't see or hear anything. She

said to me, " I knew it, because I was listening to the things she was

saying and how she was talking and she sounded just like my Mother "

I was floored...we continued to talk as Mother was just nodding and

looking out the window. I gave her a LBD brochure and she said I was

the first person that she ever met that knew what LBD was and she was

so happy. We continued to talk for about another 45 minutes off and

on, inbetween Mom and along with Mom. We were seeing the same Doctor

and we were in rooms across the hall...so while the Doctor was

working on Mom's feet I talked to her some more...and she told me the

details of her Mother's passing...We kissed and hugged and it was

just an instant bond between us...she wished me luck and walked away

with tears in her eyes because she said she knew the pain that was to

come...and she said I made her feel better because I helped her

realize that it would be selfish to want to keep her Mom in the pain

that she was in. She agreed but she is still angry, naturally, that

she had to get it at all...She was only 72 when she passed...and now

her Dad is not doing well...she said her Mom was always great and had

not one health problem or took one medication until she retired...and

then B A N G...this darn disease...

Well, I thought it was an interesting story because she still has a

primary care physician that calls it Dementia with possible LB...and

here's a stranger that knew from watching and listening for an hour

and she knew it absolutely...of course me, I go in and out of

denial...but, thanks to this group the links and the stories and the

CD and everything I had read and learned...my denial stage, I think

has finally passed me for good.

My best,

Carol Incog

Tomorrow is Mom's 79 Birthday...the 14th

[Guest guest]

Happy Birthday to your mom. I hope the day was special for the two of you.

Kath

" carol.incognito " wrote:

Hi everyone,

I have a very interesting story about what happened at my Mom's foot

doctor this morning. We got there and the doctor was running over an

hour late, due to an emergency, so we had to sit and wait in the

waiting room, naturally. While we were sitting there I noticed this

woman across from us, around my age, and she kept looking at us.

Well after about 15 minutes I got up to stretch and went down the

hall to get a list of her medicines that I had printed out at her PC

doctor. When I came back that woman was sitting next to the spot

where I was sitting. So there was the woman, myself and then Mom. I

smiled at her and she said to me, " I'm sorry for listening, but I

just lost my Mother and I was listening to you talking to your Mother

and I am so sad I could just cry, wishing I had my Mother here with

me " . I said I was very sorry and she seemed like she wanted to talk

so I asked her what her Mom passed from. She then looked at me with

this strange look and said, " Dementia, with Lewy Body " ...I almost

fell off my seat...I nodded to her and gave her the eyes that she

knew what I meant..so that my Mom wouldn't see or hear anything. She

said to me, " I knew it, because I was listening to the things she was

saying and how she was talking and she sounded just like my Mother "

I was floored...we continued to talk as Mother was just nodding and

looking out the window. I gave her a LBD brochure and she said I was

the first person that she ever met that knew what LBD was and she was

so happy. We continued to talk for about another 45 minutes off and

on, inbetween Mom and along with Mom. We were seeing the same Doctor

and we were in rooms across the hall...so while the Doctor was

working on Mom's feet I talked to her some more...and she told me the

details of her Mother's passing...We kissed and hugged and it was

just an instant bond between us...she wished me luck and walked away

with tears in her eyes because she said she knew the pain that was to

come...and she said I made her feel better because I helped her

realize that it would be selfish to want to keep her Mom in the pain

that she was in. She agreed but she is still angry, naturally, that

she had to get it at all...She was only 72 when she passed...and now

her Dad is not doing well...she said her Mom was always great and had

not one health problem or took one medication until she retired...and

then B A N G...this darn disease...

Well, I thought it was an interesting story because she still has a

primary care physician that calls it Dementia with possible LB...and

here's a stranger that knew from watching and listening for an hour

and she knew it absolutely...of course me, I go in and out of

denial...but, thanks to this group the links and the stories and the

CD and everything I had read and learned...my denial stage, I think

has finally passed me for good.

My best,

Carol Incog

Tomorrow is Mom's 79 Birthday...the 14th

[Guest guest]

Hi Dann,

Yes, I know what you mean about it seeming obvious. I was chatting

in a chat room the other night to a person that said her LO only had

frontal lobe dementia...Well, by what I asked and she told me, I am

pretty sure she had LBD...and this person had never heard of it and

it is her LO...I wasn't sure what to do in that case, I'm no Doctor,

so I just told her my Mom's symptoms...and I directed her to our

site...I didn't want to be pushy. I can always get back to her.

Should I have done more?

Left wondering,

Carol Incognito

>

>

>

[Guest guest]

Donna,

Thanks for the Birthday Wishes for Mom..we had a nice day...

Carol

>

> Carol-Incoog,

>

> It is so strange when we do find people out of no where. My friend

was telling me about her Dad. She knew about Mom. And I asked if

she thought he might have LBD. She said, " Oh, no, the MD had said

it was AD. " A week later she called me specifically before she

talked to anyone else. They had taken her Dad to a specialist and

that MD said LBD.

>

> I knew it without even seeing him just from what she was saying.

>

> Happy Birthday to your Mom.

>

> Hugs.

>

> Donna R

>

>

> Caregave for Mom (after I brought her from WI to MI) for 3 years

[Guest guest]

Dear Jacqui,

Thank you for the Birthday Wishes for MOM...she had a nice day...and

I'm exhausted... :-)

Carol

>

> Carol

> Wish your Mom a VERY HAPPY BIRTHDAY from me.

> Jacqui in Florida

>

>

>

[Guest guest]

carol, i think you did great!!!!!

i tend to sound like a medical professional becuase one i am professional

patient myslef, and permanently 100% disabled. and two i was what i call a

professional 24/7 caregiver for dad for 3 years. and i too have noticed the lbd

symptoms and have suggested the yahoo group and the website that is all you can

do, you can also contact lbda in georgia or angela in this group put attn

angela./lbda in the subject line and request brochures and keep them handy, one

in your purse ask your doctors to read them and put them out, etc. i have been

know n to give my personal email address to a cg too. but this is my choice.

sometimes you just need to talk to someone who understands.

but you did great!!!!!!

---- " carol.incognito " wrote:

Hi Dann,

Yes, I know what you mean about it seeming obvious. I was chatting

in a chat room the other night to a person that said her LO only had

frontal lobe dementia...Well, by what I asked and she told me, I am

pretty sure she had LBD...and this person had never heard of it and

it is her LO...I wasn't sure what to do in that case, I'm no Doctor,

so I just told her my Mom's symptoms...and I directed her to our

site...I didn't want to be pushy. I can always get back to her.

Should I have done more?

Left wondering,

Carol Incognito

>

>

>