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Dear ,

I so appreciate being able to read such a comprehensive profile of your mother's

life. The

slide presentation at the funeral home certainly gave me a vision of who she

was, but what

you put into words clarified her life so much better. Thank you for sharing

such a heart

felt journey. You have done well including what information you have about LBD.

Well

said. I have thought about you and your sisters numerous times since losing

your mom. I

am glad you were able, together, to put so much into her tribute. Come back to

us as you

can. Happy birthday Maggie!

>

> Today my mother would have been 77 years old.

>

> For those of you who are unfamiliar with her story - I would like to, on this

the

anniversary of her birth, share her story one more time. The Globe and Mail

newspaper

runs a regular column called " Lives Lived " . The column runs about 600 words

long but the

following is a draft (that must be shortened) of what we are going to submit in

memory of

our Mother. It is a joint effort of my sisters and I.

>

> Mother, grandmother, sister, friend, businesswoman, traveler, bridge and

cryptic

crossword master. Born February 11, 1930 in Toronto. Died December 25, 2006

from

Lewy Body Disease.

>

> Lewy Body Disease is the second leading cause of degenerative dementia in the

elderly.

Although symptoms can vary, the patient nearly always has cognitive difficulties

and

hallucinations, along with features of both Alzheimer's disease and Parkinson's

disease.

>

> Our mother, Maggie , was diagnosed with Lewy Body Disease in January of

2005.

Lewy Body disease killed our mother faster than most. The average duration is 5

to 7

years; she was gone in slightly less than two years. However, in hindsight, she

had

symptoms much earlier than that and had previously been tested for, and received

medication for both Alzheimer's and Parkinson's.

>

> Maggie was born shortly after the stock market crashed. Her family didn't

suffer greatly,

but she was definitely a child of the depression. Evidence of this was apparent

in later

years when she worried a great deal about money.

>

> She attended The Bishop Strachan School (BSS), Jarvis Collegiate and the

University of

Toronto where she received a BA in History. Following graduation, she married,

had three

daughters and became a typical 1950's housewife. Her mind was too vibrant to

stay at

home cooking and cleaning so she volunteered for a variety of charitable

organizations

and, later, was involved in the early environmental movement. She belonged to

book clubs

long before they became fashionable.

>

> In the 1970's her marriage ended and she went to work for her father, a

successful

broker. She passed the Canadian Securities course. When her father retired, she

went back

to her roots and became the business manager at BSS. During holidays, she would

travel;

China, Africa, just to name a couple of destinations. She remained at BSS for

over 15 years

until her retirement in 1993.

>

> Not being one to let retirement slow her down, Maggie enrolled in a college

course in

Jerusalem that fall. She worked on her bridge game, the Globe and Mail cryptic

crossword

and improving her scores on her Nintendo. She continued to travel extensively,

took her

grandchildren to the zoo, volunteered for almost everything at the church and

spent time

with family and friends at the cottage in the Kawartha's.

>

> In 2001 or 2002, she began to notice things were not quite right. Her memory

wasn't as

sharp as it had been and she started to have problems with her handwriting. She

had

trouble when walking Patsy, her beloved standard poodle, as the strength in her

arms

seemed to disappear. At first, her family didn't take her concerns seriously,

thinking it was

just part of the normal aging process. Eventually she had a few falls. She also

began

having strange dreams. Maggie was convinced that she was in the beginning stages

of

Alzheimer's and went so far as to tell most of her friends that this was the

case.

Ultimately, she asked her general practitioner to recommend a specialist. She

passed the

memory test the first few times with flying colours but she still worried. In

2003, she was

put on medication for Alzheimer's (Exelon). Maggie had great faith in the

medical

community and was determined to fight the progression of the disease with

anything they

had to offer. The information

> given to her about Exelon gave her a renewed optimism but unfortunately the

medication made her terribly sick and she finally had to discontinue it's use.

Later they

tried her on Parkinson's medication (Sinemet). This helped her mobility somewhat

but the

hallucinations and dreams increased.

>

> In 2004 Maggie asked her daughters to help her research and find a Seniors

Residence

for her to move into. Maggie did not want to be a burden and wanted to make

sure that if

things got bad she would be living in a place of her own choosing that had

progressive

levels of care. In May 2004, Maggie moved into a lovely suite at the Briton

House and was

thrilled that she would no longer have to do her own grocery shopping or cooking

but

could still be independent with a safety net.

>

> Late in 2004 the phone calls started. Maggie began to get her nights and days

mixed

up. She started to fall asleep at odd hours and then appear in the dining room

in the

middle of the night wondering where dinner was. The staff at the Briton House

became

concerned and called her family. Maggie would call her daughters in the middle

of the

night confused and restless. One night she called 911 because she didn't know

where she

was.

>

> In January of 2005 Maggie was taken to the hospital shortly after she was

found outside

the Briton House in the middle of the night. She was agitated and violent and

completely

incoherent. It was at the hospital we first heard about Lewy Body Disease.

After her

diagnosis we looked for any and all information, as certain medications commonly

used to

treat AD and PD are contraindicated for LBD. Information on Lewy Body Disease

was hard

to come by. There is a LBD organization in the U.S. but nothing in Canada. The

only

support came from the Alzheimer's Society. Eventually we found an on-line

caregivers

support group at YAHOO! which became a God send throughout her journey.

>

> From January 2005 onwards she went downhill fast. When she returned to the

Briton

House in February it was to the Memory Floor as she now required care 24/7. Her

friends

and family were saddened to see the rapid decline from the amazing woman she

was. She

had to use a walker and was eventually fitted for a wheelchair shortly before

her death.

She had increasing trouble with her speech, and because she was not able to get

the

correct words out it became difficult to converse with her - - and was no doubt

highly

frustrating for Maggie. She still enjoyed watching sports on TV but couldn't

remember how

to turn the television set on or change the station. Maggie could no longer use

the

telephone and although she frequently carried a tattered paperback around with

her, she

could no longer read. Eating became a big problem, and eventually her ability to

swallow

became compromised. Maggie was in hospital, this time due to aspiration

pneumonia

when her family was given the hard

> choice – to prolong her life and have her aspirate again or let her go.

>

> Maggie died on Christmas Day 2006. We had hoped to have her with us longer.

However, her quality of life had severely declined and we suspect that deep in

the recesses

of her mind, she was glad to go.

>

>

> Thank you -- all of you for the help, love and care you have shown me over the

past two

years. A special thank you to in Oakville who represented the

LBDCaregivers

group by coming to the funeral home reception for Mum. I am still working

through the

grief stages and do not feel able to contribute to the group at this time.

Maybe later.

>

> Much love to all of you in your journeys.

>

> from Cresswell ON Canada

> Long distance CG to Margaret (Mum)

>

>

>

>

> ---------------------------------

> All new Yahoo! Mail -

> ---------------------------------

> Get a sneak peak at messages with a handy reading pane.

>

>

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Share on other sites

sarah

what a wonderful article to have printed in memory of your mum, i hope it helps

others get the proper diagnosis, as we all know many are misdiagnosed.

you and your sister have a great way with words, good job.

also we are glad to have you back on the site with us. i can tell you that

having this group after dads' death was just as much as a Godsend as it was

during dads battle with lbd. it feels nice to help someone who is struggling

with what we already went thru and also the kinship in the group was great, i

could still talk about dad, without someone saying i am sorry sharon or someone

being at a loss of words and then i feel like i cant talk about him, here even

17 months after his death i can still talk about him and share stories here,

that is a good feeling hugs, sharon m

---- Skrabek wrote:

Today my mother would have been 77 years old.

For those of you who are unfamiliar with her story - I would like to, on this

the anniversary of her birth, share her story one more time. The Globe and Mail

newspaper runs a regular column called " Lives Lived " . The column runs about 600

words long but the following is a draft (that must be shortened) of what we are

going to submit in memory of our Mother. It is a joint effort of my sisters and

I.

Mother, grandmother, sister, friend, businesswoman, traveler, bridge and cryptic

crossword master. Born February 11, 1930 in Toronto. Died December 25, 2006

from Lewy Body Disease.

Lewy Body Disease is the second leading cause of degenerative dementia in the

elderly. Although symptoms can vary, the patient nearly always has cognitive

difficulties and hallucinations, along with features of both AlzheimerÂ’s

disease and ParkinsonÂ’s disease.

Our mother, Maggie , was diagnosed with Lewy Body Disease in January of

2005. Lewy Body disease killed our mother faster than most. The average duration

is 5 to 7 years; she was gone in slightly less than two years. However, in

hindsight, she had symptoms much earlier than that and had previously been

tested for, and received medication for both AlzheimerÂ’s and ParkinsonÂ’s.

Maggie was born shortly after the stock market crashed. Her family didnÂ’t

suffer greatly, but she was definitely a child of the depression. Evidence of

this was apparent in later years when she worried a great deal about money.

She attended The Bishop Strachan School (BSS), Jarvis Collegiate and the

University of Toronto where she received a BA in History. Following graduation,

she married, had three daughters and became a typical 1950Â’s housewife. Her

mind was too vibrant to stay at home cooking and cleaning so she volunteered for

a variety of charitable organizations and, later, was involved in the early

environmental movement. She belonged to book clubs long before they became

fashionable.

In the 1970Â’s her marriage ended and she went to work for her father, a

successful broker. She passed the Canadian Securities course. When her father

retired, she went back to her roots and became the business manager at BSS.

During holidays, she would travel; China, Africa, just to name a couple of

destinations. She remained at BSS for over 15 years until her retirement in

1993.

Not being one to let retirement slow her down, Maggie enrolled in a college

course in Jerusalem that fall. She worked on her bridge game, the Globe and

Mail cryptic crossword and improving her scores on her Nintendo. She continued

to travel extensively, took her grandchildren to the zoo, volunteered for almost

everything at the church and spent time with family and friends at the cottage

in the KawarthaÂ’s.

In 2001 or 2002, she began to notice things were not quite right. Her memory

wasnÂ’t as sharp as it had been and she started to have problems with her

handwriting. She had trouble when walking Patsy, her beloved standard poodle, as

the strength in her arms seemed to disappear. At first, her family didnÂ’t take

her concerns seriously, thinking it was just part of the normal aging process.

Eventually she had a few falls. She also began having strange dreams. Maggie was

convinced that she was in the beginning stages of AlzheimerÂ’s and went so far

as to tell most of her friends that this was the case. Ultimately, she asked her

general practitioner to recommend a specialist. She passed the memory test the

first few times with flying colours but she still worried. In 2003, she was put

on medication for AlzheimerÂ’s (Exelon). Maggie had great faith in the medical

community and was determined to fight the progression of the disease with

anything they had to offer. The information

given to her about Exelon gave her a renewed optimism but unfortunately the

medication made her terribly sick and she finally had to discontinue itÂ’s use.

Later they tried her on ParkinsonÂ’s medication (Sinemet). This helped her

mobility somewhat but the hallucinations and dreams increased.

In 2004 Maggie asked her daughters to help her research and find a Seniors

Residence for her to move into. Maggie did not want to be a burden and wanted

to make sure that if things got bad she would be living in a place of her own

choosing that had progressive levels of care. In May 2004, Maggie moved into a

lovely suite at the Briton House and was thrilled that she would no longer have

to do her own grocery shopping or cooking but could still be independent with a

safety net.

Late in 2004 the phone calls started. Maggie began to get her nights and days

mixed up. She started to fall asleep at odd hours and then appear in the dining

room in the middle of the night wondering where dinner was. The staff at the

Briton House became concerned and called her family. Maggie would call her

daughters in the middle of the night confused and restless. One night she

called 911 because she didnÂ’t know where she was.

In January of 2005 Maggie was taken to the hospital shortly after she was found

outside the Briton House in the middle of the night. She was agitated and

violent and completely incoherent. It was at the hospital we first heard about

Lewy Body Disease. After her diagnosis we looked for any and all information,

as certain medications commonly used to treat AD and PD are contraindicated for

LBD. Information on Lewy Body Disease was hard to come by. There is a LBD

organization in the U.S. but nothing in Canada. The only support came from the

AlzheimerÂ’s Society. Eventually we found an on-line caregivers support group at

YAHOO! which became a God send throughout her journey.

From January 2005 onwards she went downhill fast. When she returned to the

Briton House in February it was to the Memory Floor as she now required care

24/7. Her friends and family were saddened to see the rapid decline from the

amazing woman she was. She had to use a walker and was eventually fitted for a

wheelchair shortly before her death. She had increasing trouble with her speech,

and because she was not able to get the correct words out it became difficult to

converse with her - - and was no doubt highly frustrating for Maggie. She still

enjoyed watching sports on TV but couldnÂ’t remember how to turn the television

set on or change the station. Maggie could no longer use the telephone and

although she frequently carried a tattered paperback around with her, she could

no longer read. Eating became a big problem, and eventually her ability to

swallow became compromised. Maggie was in hospital, this time due to aspiration

pneumonia when her family was given the hard

choice – to prolong her life and have her aspirate again or let her go.

Maggie died on Christmas Day 2006. We had hoped to have her with us longer.

However, her quality of life had severely declined and we suspect that deep in

the recesses of her mind, she was glad to go.

Thank you -- all of you for the help, love and care you have shown me over the

past two years. A special thank you to in Oakville who represented the

LBDCaregivers group by coming to the funeral home reception for Mum. I am still

working through the grief stages and do not feel able to contribute to the group

at this time. Maybe later.

Much love to all of you in your journeys.

from Cresswell ON Canada

Long distance CG to Margaret (Mum)

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

All new Yahoo! Mail -

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

Get a sneak peak at messages with a handy reading pane.

Link to comment
Share on other sites

-- What a wonderful tribute to your Mum! I see so many

similarities with your mother as with my mother. Even with the LBD, it

began around the same time. Your mother & my mother were both taken far

too young -- when each of them, no doubt, had a lot of living left to

do. May you & I follow in their footsteps and live our lives to the

fullest with lots of travel and good deeds - and we'll both be rewarded

by our guardian angels up above. Thank you for sharing!

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Share on other sites

,

What a moving tribute to your mother...full of love and memories and

a lot of straightforward information about LBD for the general

public. I enjoyed reading about your mother. I'm sure you miss her.

Take care,

Daughter of Bill, 91

>

> Today my mother would have been 77 years old.

>

> For those of you who are unfamiliar with her story - I would like

to, on this the anniversary of her birth, share her story one more

time. The Globe and Mail newspaper runs a regular column

called " Lives Lived " . The column runs about 600 words long but the

following is a draft (that must be shortened) of what we are going to

submit in memory of our Mother. It is a joint effort of my sisters

and I.

>

> Mother, grandmother, sister, friend, businesswoman, traveler,

bridge and cryptic crossword master. Born February 11, 1930 in

Toronto. Died December 25, 2006 from Lewy Body Disease.

>

> Lewy Body Disease is the second leading cause of degenerative

dementia in the elderly. Although symptoms can vary, the patient

nearly always has cognitive difficulties and hallucinations, along

with features of both Alzheimer's disease and Parkinson's disease.

>

> Our mother, Maggie , was diagnosed with Lewy Body Disease in

January of 2005. Lewy Body disease killed our mother faster than

most. The average duration is 5 to 7 years; she was gone in slightly

less than two years. However, in hindsight, she had symptoms much

earlier than that and had previously been tested for, and received

medication for both Alzheimer's and Parkinson's.

>

> Maggie was born shortly after the stock market crashed. Her family

didn't suffer greatly, but she was definitely a child of the

depression. Evidence of this was apparent in later years when she

worried a great deal about money.

>

> She attended The Bishop Strachan School (BSS), Jarvis Collegiate

and the University of Toronto where she received a BA in History.

Following graduation, she married, had three daughters and became a

typical 1950's housewife. Her mind was too vibrant to stay at home

cooking and cleaning so she volunteered for a variety of charitable

organizations and, later, was involved in the early environmental

movement. She belonged to book clubs long before they became

fashionable.

>

> In the 1970's her marriage ended and she went to work for her

father, a successful broker. She passed the Canadian Securities

course. When her father retired, she went back to her roots and

became the business manager at BSS. During holidays, she would

travel; China, Africa, just to name a couple of destinations. She

remained at BSS for over 15 years until her retirement in 1993.

>

> Not being one to let retirement slow her down, Maggie enrolled in a

college course in Jerusalem that fall. She worked on her bridge

game, the Globe and Mail cryptic crossword and improving her scores

on her Nintendo. She continued to travel extensively, took her

grandchildren to the zoo, volunteered for almost everything at the

church and spent time with family and friends at the cottage in the

Kawartha's.

>

> In 2001 or 2002, she began to notice things were not quite right.

Her memory wasn't as sharp as it had been and she started to have

problems with her handwriting. She had trouble when walking Patsy,

her beloved standard poodle, as the strength in her arms seemed to

disappear. At first, her family didn't take her concerns seriously,

thinking it was just part of the normal aging process. Eventually she

had a few falls. She also began having strange dreams. Maggie was

convinced that she was in the beginning stages of Alzheimer's and

went so far as to tell most of her friends that this was the case.

Ultimately, she asked her general practitioner to recommend a

specialist. She passed the memory test the first few times with

flying colours but she still worried. In 2003, she was put on

medication for Alzheimer's (Exelon). Maggie had great faith in the

medical community and was determined to fight the progression of the

disease with anything they had to offer. The information

> given to her about Exelon gave her a renewed optimism but

unfortunately the medication made her terribly sick and she finally

had to discontinue it's use. Later they tried her on Parkinson's

medication (Sinemet). This helped her mobility somewhat but the

hallucinations and dreams increased.

>

> In 2004 Maggie asked her daughters to help her research and find a

Seniors Residence for her to move into. Maggie did not want to be a

burden and wanted to make sure that if things got bad she would be

living in a place of her own choosing that had progressive levels of

care. In May 2004, Maggie moved into a lovely suite at the Briton

House and was thrilled that she would no longer have to do her own

grocery shopping or cooking but could still be independent with a

safety net.

>

> Late in 2004 the phone calls started. Maggie began to get her

nights and days mixed up. She started to fall asleep at odd hours and

then appear in the dining room in the middle of the night wondering

where dinner was. The staff at the Briton House became concerned and

called her family. Maggie would call her daughters in the middle of

the night confused and restless. One night she called 911 because

she didn't know where she was.

>

> In January of 2005 Maggie was taken to the hospital shortly after

she was found outside the Briton House in the middle of the night.

She was agitated and violent and completely incoherent. It was at

the hospital we first heard about Lewy Body Disease. After her

diagnosis we looked for any and all information, as certain

medications commonly used to treat AD and PD are contraindicated for

LBD. Information on Lewy Body Disease was hard to come by. There is a

LBD organization in the U.S. but nothing in Canada. The only support

came from the Alzheimer's Society. Eventually we found an on-line

caregivers support group at YAHOO! which became a God send throughout

her journey.

>

> From January 2005 onwards she went downhill fast. When she

returned to the Briton House in February it was to the Memory Floor

as she now required care 24/7. Her friends and family were saddened

to see the rapid decline from the amazing woman she was. She had to

use a walker and was eventually fitted for a wheelchair shortly

before her death. She had increasing trouble with her speech, and

because she was not able to get the correct words out it became

difficult to converse with her - - and was no doubt highly

frustrating for Maggie. She still enjoyed watching sports on TV but

couldn't remember how to turn the television set on or change the

station. Maggie could no longer use the telephone and although she

frequently carried a tattered paperback around with her, she could no

longer read. Eating became a big problem, and eventually her ability

to swallow became compromised. Maggie was in hospital, this time due

to aspiration pneumonia when her family was given the hard

> choice – to prolong her life and have her aspirate again or let

her go.

>

> Maggie died on Christmas Day 2006. We had hoped to have her with us

longer. However, her quality of life had severely declined and we

suspect that deep in the recesses of her mind, she was glad to go.

>

>

> Thank you -- all of you for the help, love and care you have shown

me over the past two years. A special thank you to in

Oakville who represented the LBDCaregivers group by coming to the

funeral home reception for Mum. I am still working through the grief

stages and do not feel able to contribute to the group at this time.

Maybe later.

>

> Much love to all of you in your journeys.

>

> from Cresswell ON Canada

> Long distance CG to Margaret (Mum)

>

>

>

>

> ---------------------------------

> All new Yahoo! Mail -

> ---------------------------------

> Get a sneak peak at messages with a handy reading pane.

>

>

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