Re: Start up Group DLB

[Guest guest]

Lida, Hi i'm and i'm in Glasgow.

I've been with the group since January 2003 and my granda passed in August 2003

from LBD.

Start up Group DLB

I am interested to hear from anyone in the UK who is caring for

someone with Diffuse Lewy Body, please contact me. I am also

interested in starting up a group in my area (Taunton, Somerset, UK -

all of the South West) if anyone is interested please contact me.

Kinda regards.

[Guest guest]

Sorry, !!

Start up Group DLB

I am interested to hear from anyone in the UK who is caring for

someone with Diffuse Lewy Body, please contact me. I am also

interested in starting up a group in my area (Taunton, Somerset, UK -

all of the South West) if anyone is interested please contact me.

Kinda regards.

[Guest guest]

linda,

i forwarded a copy of your email to ashley who is teh chair for the Lewy Body

Socieity in the UK, she may be able to help you wiht the supprot group, i am

sure you will hear from her soon, hugs, sharon

---- Larby wrote:

I am interested to hear from anyone in the UK who is caring for

someone with Diffuse Lewy Body, please contact me. I am also

interested in starting up a group in my area (Taunton, Somerset, UK -

all of the South West) if anyone is interested please contact me.

Kinda regards.

--

I am daugher of Leonard, diagnosed May 2004, probably had lbd since 1993,.Dad

had a serious fall in 7/05 causing him to hav hip surgery .After that he

developed aspiration pneumonia 7/05 with pulmonary embolyis, which he almost

died from. He had a 2nd bout of aspiration pneumonia and uti 8/05. He died when

his blood pressure fluctuations started dropping without coming back up on

9/25/05,

may he rest in peace with his mom and dad,

a smile a day keeps the meanies away

[Guest guest]

Thanks Sharon, I have spoken to just have to find out now how to get a

website up and running.

LadySmilingAtU2@... wrote: linda,

i forwarded a copy of your email to ashley who is teh chair for the Lewy Body

Socieity in the UK, she may be able to help you wiht the supprot group, i am

sure you will hear from her soon, hugs, sharon

---- Larby wrote:

I am interested to hear from anyone in the UK who is caring for

someone with Diffuse Lewy Body, please contact me. I am also

interested in starting up a group in my area (Taunton, Somerset, UK -

all of the South West) if anyone is interested please contact me.

Kinda regards.

--

I am daugher of Leonard, diagnosed May 2004, probably had lbd since 1993,.Dad

had a serious fall in 7/05 causing him to hav hip surgery .After that he

developed aspiration pneumonia 7/05 with pulmonary embolyis, which he almost

died from. He had a 2nd bout of aspiration pneumonia and uti 8/05. He died when

his blood pressure fluctuations started dropping without coming back up on

9/25/05,

may he rest in peace with his mom and dad,

a smile a day keeps the meanies away

Welcome to LBDcaregivers.

[Guest guest]

Hi

Good to hear from you. My mother has recently been diagnosed with LBD and I

wondered if you could share with me your granda's story. It is very difficult

at the beginning not knowing what to expect. My mother seems to be going down

quite rapidly. I have five sisters and two brothers and no one would believe me

that there was anything wrong with my mother. I took her to the doctor who

referred my mum to a neurologist. Anyway after some toing and froing he

diagnosed Parkinsonism and as she suffered from hallucinations from the tablets

he diagnosed LBD. My mother has good days and bad days but as months go by I

notice she loses certain techniques she once had, ie she cannot comprehend what

she reads, she now (not always) has problems following tv programmes and can't

always understand what people are saying. She is terrified of getting lost

around town and not being able to remember how to get home (which she has done

previously but suddenly remembers and manages to

get home. Did your grama suffer from this?

My mum is now having problems when she goes to the shops as she doesn't

understand how money works any more, it is very sad and heartbreaking seeing

someone go through life and lose the little pleasures they do have.

How long did your granma go through this awful disease?

Thanks for listening and sorry it took so long to get back to you, I have to

fight my daughters to get the computer. I do have a work e-mail

(l.larby@...) which you can get me on 9-5 Monday to Friday.

Take care, look forward to hearing from you.

danny campbell wrote:

Lida, Hi i'm and i'm in Glasgow.

I've been with the group since January 2003 and my granda passed in August 2003

from LBD.

Start up Group DLB

I am interested to hear from anyone in the UK who is caring for

someone with Diffuse Lewy Body, please contact me. I am also

interested in starting up a group in my area (Taunton, Somerset, UK -

all of the South West) if anyone is interested please contact me.

Kinda regards.

[Guest guest]

i will e-mail you on your work e-mail(if thats ok),just wanted to respond

to what you've already written.

My granda was the same, with money, with shopping, with TV programmes. When

Trevor Mc would read news at ten my granda thought he was speaking to him

personaly...LOL... he thought that it was news for bert (his name was robert).

My granda's diagnosis came after being originally diagnosed with parkinsons.

There wasn't much time, only a couple of months, between that diagnosis and the

LBD one. he had gone to the bank and when he got to the teller he had forgotten

his name, sort code, account number etc...He'd been with the bank for so many

years that they knew he carried a little black book with details and names and

numbers on it so they had to call my aunt to come get him. He knew he needed

medical investigations but point blank refused at first as he knew what they

were going to tell him. Again like you my great aunt had noticed subtle changes

and had warned us but we thought she was going off her head as we'd never seen

it. In total my granda had LBD for nine years, he started to go down hill after

the bank incident and lived for another five, passing in 2003.

I'll e-mail you tonight and if you want to ask more questions then feel free to

do so. You can e-mail me personally on daniel.campbell1@....

Take care.

xx

Start up Group DLB

I am interested to hear from anyone in the UK who is caring for

someone with Diffuse Lewy Body, please contact me. I am also

interested in starting up a group in my area (Taunton, Somerset, UK -

all of the South West) if anyone is interested please contact me.

Kinda regards.

[Guest guest]

Hi, !

Your mother's story sounds exactly like my mother's story. Same progression

and it sounds like we are in the same place with it.

Where are you in the UK? My grandfather was from Cornwall and my

grandmother from the Liverpool area. I live in the US.

Gladys

-- Re: Start up Group DLB

Hi

Good to hear from you. My mother has recently been diagnosed with LBD and

I wondered if you could share with me your granda's story. It is very

difficult at the beginning not knowing what to expect. My mother seems to

be going down quite rapidly. I have five sisters and two brothers and no

one would believe me that there was anything wrong with my mother. I took

her to the doctor who referred my mum to a neurologist. Anyway after some

toing and froing he diagnosed Parkinsonism and as she suffered from

hallucinations from the tablets he diagnosed LBD. My mother has good days

and bad days but as months go by I notice she loses certain techniques she

once had, ie she cannot comprehend what she reads, she now (not always) has

problems following tv programmes and can't always understand what people are

saying. She is terrified of getting lost around town and not being able to

remember how to get home (which she has done previously but suddenly

remembers and manages to

get home. Did your grama suffer from this?

My mum is now having problems when she goes to the shops as she doesn't

understand how money works any more, it is very sad and heartbreaking seeing

someone go through life and lose the little pleasures they do have.

How long did your granma go through this awful disease?

Thanks for listening and sorry it took so long to get back to you, I have

to fight my daughters to get the computer. I do have a work e-mail (l

larby@...) which you can get me on 9-5 Monday to Friday.

Take care, look forward to hearing from you.

danny campbell wrote:

Lida, Hi i'm and i'm in Glasgow.

I've been with the group since January 2003 and my granda passed in August

2003 from LBD.

Start up Group DLB

I am interested to hear from anyone in the UK who is caring for

someone with Diffuse Lewy Body, please contact me. I am also

interested in starting up a group in my area (Taunton, Somerset, UK -

all of the South West) if anyone is interested please contact me.

Kinda regards.

[Guest guest]

That's interesting. Just yesterday, my mother told me that she was

listening to Bush all afternoon and she couldn't wait for " him to

leave " . I finally got her to realize it was the TV.

Gladys

-- Re: Start up Group DLB

i will e-mail you on your work e-mail(if thats ok),just wanted to

respond to what you've already written.

My granda was the same, with money, with shopping, with TV programmes. When

Trevor Mc would read news at ten my granda thought he was speaking to

him personaly...LOL... he thought that it was news for bert (his name was

robert). My granda's diagnosis came after being originally diagnosed with

parkinsons. There wasn't much time, only a couple of months, between that

diagnosis and the LBD one. he had gone to the bank and when he got to the

teller he had forgotten his name, sort code, account number etc...He'd been

with the bank for so many years that they knew he carried a little black

book with details and names and numbers on it so they had to call my aunt to

come get him. He knew he needed medical investigations but point blank

refused at first as he knew what they were going to tell him. Again like you

my great aunt had noticed subtle changes and had warned us but we thought

she was going off her head as we'd never seen it. In total my granda had LBD

for nine years, he started to go down hill after the bank incident and lived

for another five, passing in 2003.

I'll e-mail you tonight and if you want to ask more questions then feel free

to do so. You can e-mail me personally on daniel.campbell1@....

Take care.

xx

Start up Group DLB

I am interested to hear from anyone in the UK who is caring for

someone with Diffuse Lewy Body, please contact me. I am also

interested in starting up a group in my area (Taunton, Somerset, UK -

all of the South West) if anyone is interested please contact me.

Kinda regards.

[Guest guest]

Gladys. L.M.A.O. sometimes within the tragedy of this illness there is laughter,

if i thought G.W was talking to me all afternoon i'd ask him to leave too!!

amanda.xx

Start up Group DLB

I am interested to hear from anyone in the UK who is caring for

someone with Diffuse Lewy Body, please contact me. I am also

interested in starting up a group in my area (Taunton, Somerset, UK -

all of the South West) if anyone is interested please contact me.

Kinda regards.

[Guest guest]

Hello

I have a husband with LBD here in the UK who was diagnosed 8 years ago. No

good for a group in Taunton because I live in London. Anyone else live in

London?

Helena

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

Now you can scan emails quickly with a reading pane. Get the new Yahoo! Mail.

[Guest guest]

Hi Helena

I know you say the Taunton group is no good for you but I actually come from

London. I have lived in Croydon, Mitcham and New Malden/Kingston. I moved to

Taunton 6 years ago and have family in Surrey still. Where abouts in London are

you? My brothers and sisters are in Surrey and it is only 21/2 hours away from

Taunton and I often go back to see my family. I think my sisters and brothers

in Surrey are struggling more than I am coming to terms with my mother having

LBD as when they come to Taunton they don't believe there is anything wrong with

my mum or maybe they are just in denial, I don't know. My brother who lives in

New Malden is desperate to speak with any carers himself. He is in Australia

until the end of July though. It is al little easier for me as I see my mother

every day and I attend all her appointments and get to speak with the GP about

my mum but my family have no one to speak to. I am also going to London in

December if you are around then.

Take care.

Helena Felix wrote:

Hello

I have a husband with LBD here in the UK who was diagnosed 8 years ago. No good

for a group in Taunton because I live in London. Anyone else live in London?

Helena

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

Now you can scan emails quickly with a reading pane. Get the new Yahoo! Mail.

[Guest guest]

Hi Gladys

Thank you for emailing me. I live in Taunton but originally come from London.

My husband's family live in Falmouth, Cornwall, and we visit his mum about once

a month.

When was your mother diagnosed with LBD? Does she have Parkinsonism too? My

mother lives on her own but I visit her three times a day (once in the morning

before I go to work, lunch times and after work). My sisters and I take it in

turns to stay over for a week, each week, so she always has someone with her. I

think she feels suffocated but we worry so much about her. My mother has good

days and bad days and on her bad days she is frighted and worries that she will

get lost if she goes out,she only tells me this on her good days for some

unknown reason. It is heartbreaking. I am in the process of selling my house

and buying a bigger house in order that my mother lives with us. My mother is

on medication for her Parkinsonism which increases by one tablet a week, she has

been on previous medication which caused awful side effects. I hope this

medication agrees with her but we take each day one step at a time.

Take care.

Gladys Stefany wrote:

Hi, !

Your mother's story sounds exactly like my mother's story. Same progression

and it sounds like we are in the same place with it.

Where are you in the UK? My grandfather was from Cornwall and my

grandmother from the Liverpool area. I live in the US.

Gladys

-- Re: Start up Group DLB

Hi

Good to hear from you. My mother has recently been diagnosed with LBD and

I wondered if you could share with me your granda's story. It is very

difficult at the beginning not knowing what to expect. My mother seems to

be going down quite rapidly. I have five sisters and two brothers and no

one would believe me that there was anything wrong with my mother. I took

her to the doctor who referred my mum to a neurologist. Anyway after some

toing and froing he diagnosed Parkinsonism and as she suffered from

hallucinations from the tablets he diagnosed LBD. My mother has good days

and bad days but as months go by I notice she loses certain techniques she

once had, ie she cannot comprehend what she reads, she now (not always) has

problems following tv programmes and can't always understand what people are

saying. She is terrified of getting lost around town and not being able to

remember how to get home (which she has done previously but suddenly

remembers and manages to

get home. Did your grama suffer from this?

My mum is now having problems when she goes to the shops as she doesn't

understand how money works any more, it is very sad and heartbreaking seeing

someone go through life and lose the little pleasures they do have.

How long did your granma go through this awful disease?

Thanks for listening and sorry it took so long to get back to you, I have

to fight my daughters to get the computer. I do have a work e-mail (l

larby@...) which you can get me on 9-5 Monday to Friday.

Take care, look forward to hearing from you.

danny campbell wrote:

Lida, Hi i'm and i'm in Glasgow.

I've been with the group since January 2003 and my granda passed in August

2003 from LBD.

Start up Group DLB

I am interested to hear from anyone in the UK who is caring for

someone with Diffuse Lewy Body, please contact me. I am also

interested in starting up a group in my area (Taunton, Somerset, UK -

all of the South West) if anyone is interested please contact me.

Kinda regards.