Re: What Stage/ How Long ?

[Guest guest]

I am new to the journey and I think everyone who comes to this list has

the same question " how long? " I did. I was told 5 years to 20 years.

There are those on this list who are going strong after 10 and others who

died after and yet another who told me she lost her husband after 15. I

don't think there is a set answer. We all wish there was. It sounds like

the disease is progressing rapidly with your wife, going from functioning 5

years ago to nearly full assistance with ADL in such a short time. Good

luck.

(57)

Monroe WA

Husband Len (63) dx Parkinson's 2011, dx LBD January 2012

From: LBDcaregivers [mailto:LBDcaregivers ]

On Behalf Of gary.s.dale@...

Sent: Sunday, April 15, 2012 11:49 AM

To: LBDcaregivers

Subject: What Stage/ How Long ?

anyone want to venture a guess as to how much longer, or what's next with my

wife (Kay, age 60 in june) ? perhaps you more experienced caregivers or

those that have already lost your loved ones? here is the history. from

2008-2010 kay seemed fine with II diabetes and FMS. was walking , driving,

working, etc. at work (teacher assist) she started having memory problems,

couldn't find materials, talked to herself. she quit her job in 2008 when

summer came. also she came to pick me up at a golf course and ended up

driving our very small car onto the golf cart road where they escorted her

w/ car to clubhouse. still seemed like something that was just an accident

and funny, at the time. 2010. 1) exhibited delusion and major depression- in

4 hospitals till they convinced me ECT was harmless and was only thing now

to stop depression and delusion- she wasn't the same since.2.) now in

wheelchair 3.)wears diapers but i set timer to avoid more work 4.)watches tv

most the day- i take her outside to sit in sun or go to drs. and lab 5.)

delusions/ depression/ and sleep are under control with meds 6.)legs getting

weaker, can't walk but i can stand her up on legs for transfers to potty,

wheelchair, etc. 7.)losing ability to use fork and spoon, forget a knife-

i'm having to feed her myself more now 8.) starting to wave at herself in

mirror every now and then. says she knows it's her but i don't think so.9.)

i ask her name and she will say " what's your name? " hard to get her to say

her own name. 10.) looked at a picture of our family and only could name me,

not herself or two daughters. 11.) she called me Peanut once, that is our

dog. 12.)she does smile and laugh a lot and likes music, cards, and pictures

and sleeps well, and enjoys the sun outside. she even said hello once to

people walking by. 13.) gaining weight from 160-170 to 190 lbs ,5' 9 " -

appetite fine 14.) FMS symptoms have seemed to disappear. i have asked the

various doctors: primary, neurologist, psychiatrist- but they don't like to

set dates. i finally got her treating doctor to tell me he thinks Kay's case

may run 8 years from start to finish. you new people can use my info. as a

guideline to how things have gone downhill for us in 4 years. every case is

different. God Bless You All..... (husband, 60 )

[Guest guest]

I am new to the journey and I think everyone who comes to this list has

the same question " how long? " I did. I was told 5 years to 20 years.

There are those on this list who are going strong after 10 and others who

died after and yet another who told me she lost her husband after 15. I

don't think there is a set answer. We all wish there was. It sounds like

the disease is progressing rapidly with your wife, going from functioning 5

years ago to nearly full assistance with ADL in such a short time. Good

luck.

(57)

Monroe WA

Husband Len (63) dx Parkinson's 2011, dx LBD January 2012

From: LBDcaregivers [mailto:LBDcaregivers ]

On Behalf Of gary.s.dale@...

Sent: Sunday, April 15, 2012 11:49 AM

To: LBDcaregivers

Subject: What Stage/ How Long ?

anyone want to venture a guess as to how much longer, or what's next with my

wife (Kay, age 60 in june) ? perhaps you more experienced caregivers or

those that have already lost your loved ones? here is the history. from

2008-2010 kay seemed fine with II diabetes and FMS. was walking , driving,

working, etc. at work (teacher assist) she started having memory problems,

couldn't find materials, talked to herself. she quit her job in 2008 when

summer came. also she came to pick me up at a golf course and ended up

driving our very small car onto the golf cart road where they escorted her

w/ car to clubhouse. still seemed like something that was just an accident

and funny, at the time. 2010. 1) exhibited delusion and major depression- in

4 hospitals till they convinced me ECT was harmless and was only thing now

to stop depression and delusion- she wasn't the same since.2.) now in

wheelchair 3.)wears diapers but i set timer to avoid more work 4.)watches tv

most the day- i take her outside to sit in sun or go to drs. and lab 5.)

delusions/ depression/ and sleep are under control with meds 6.)legs getting

weaker, can't walk but i can stand her up on legs for transfers to potty,

wheelchair, etc. 7.)losing ability to use fork and spoon, forget a knife-

i'm having to feed her myself more now 8.) starting to wave at herself in

mirror every now and then. says she knows it's her but i don't think so.9.)

i ask her name and she will say " what's your name? " hard to get her to say

her own name. 10.) looked at a picture of our family and only could name me,

not herself or two daughters. 11.) she called me Peanut once, that is our

dog. 12.)she does smile and laugh a lot and likes music, cards, and pictures

and sleeps well, and enjoys the sun outside. she even said hello once to

people walking by. 13.) gaining weight from 160-170 to 190 lbs ,5' 9 " -

appetite fine 14.) FMS symptoms have seemed to disappear. i have asked the

various doctors: primary, neurologist, psychiatrist- but they don't like to

set dates. i finally got her treating doctor to tell me he thinks Kay's case

may run 8 years from start to finish. you new people can use my info. as a

guideline to how things have gone downhill for us in 4 years. every case is

different. God Bless You All..... (husband, 60 )

[Guest guest]

My crystal ball is in the shop. Unfortunately, I think that there's a lot of

factors that can affect this (a HUGE one being meds and your doc's understanding

of the condition). I've concluded that drugs are about the least understood part

of modern medical science, especially when it comes to seniors and dementia.

For my Dad, the surgery that escalated things was when he was about 65 or so.

Like you, we didn't see the signs until we looked back much later. A couple of

years after the surgery he was in a nursing home.

By the time he was about 70 I think it was, they had fiddled with his meds and

he was no longer able to speak (although before that, he wasn't making sense

when he spoke anyhow). They changed the meds back but the damage was done. He

never spoke again, but always seemed to be happy to see us; whether he was happy

to see ANYONE coming to see him, or happy to see his only grandchild who was

then four (he always loved kids), or recognized us as his own, I do not know. He

passed away when he was 72. The last time I saw him was two days before died. He

had a bit of a cold, but certainly didn't seem ill enough to make me believe we

were going to lose him then. But as I'd said for a long time before that, we'd

lost Dad long ago. I'm not sure if it made it easier when the rest of him was

gone too.

>

> anyone want to venture a guess as to how much longer, or what's next with my

wife (Kay, age 60 in june) ? perhaps you more experienced caregivers or those

that have already lost your loved ones? here is the history. from 2008-2010

kay seemed fine with II diabetes and FMS. was walking , driving, working, etc.

at work (teacher assist) she started having memory problems, couldn't find

materials, talked to herself. she quit her job in 2008 when summer came. also

she came to pick me up at a golf course and ended up driving our very small car

onto the golf cart road where they escorted her w/ car to clubhouse. still

seemed like something that was just an accident and funny, at the time. 2010.

1) exhibited delusion and major depression- in 4 hospitals till they convinced

me ECT was harmless and was only thing now to stop depression and delusion- she

wasn't the same since.2.) now in wheelchair 3.)wears diapers but i set timer to

avoid more work 4.)watches tv most the day- i take her outside to sit in sun or

go to drs. and lab 5.) delusions/ depression/ and sleep are under control with

meds 6.)legs getting weaker, can't walk but i can stand her up on legs for

transfers to potty, wheelchair, etc. 7.)losing ability to use fork and spoon,

forget a knife- i'm having to feed her myself more now 8.) starting to wave at

herself in mirror every now and then. says she knows it's her but i don't think

so.9.) i ask her name and she will say " what's your name? " hard to get her to

say her own name. 10.) looked at a picture of our family and only could name me,

not herself or two daughters. 11.) she called me Peanut once, that is our dog.

12.)she does smile and laugh a lot and likes music, cards, and pictures and

sleeps well, and enjoys the sun outside. she even said hello once to people

walking by. 13.) gaining weight from 160-170 to 190 lbs ,5' 9 " - appetite fine

14.) FMS symptoms have seemed to disappear. i have asked the various

doctors: primary, neurologist, psychiatrist- but they don't like to set dates.

i finally got her treating doctor to tell me he thinks Kay's case may run 8

years from start to finish. you new people can use my info. as a guideline to

how things have gone downhill for us in 4 years. every case is different. God

Bless You All..... (husband, 60 )

>

[Guest guest]

My crystal ball is in the shop. Unfortunately, I think that there's a lot of

factors that can affect this (a HUGE one being meds and your doc's understanding

of the condition). I've concluded that drugs are about the least understood part

of modern medical science, especially when it comes to seniors and dementia.

For my Dad, the surgery that escalated things was when he was about 65 or so.

Like you, we didn't see the signs until we looked back much later. A couple of

years after the surgery he was in a nursing home.

By the time he was about 70 I think it was, they had fiddled with his meds and

he was no longer able to speak (although before that, he wasn't making sense

when he spoke anyhow). They changed the meds back but the damage was done. He

never spoke again, but always seemed to be happy to see us; whether he was happy

to see ANYONE coming to see him, or happy to see his only grandchild who was

then four (he always loved kids), or recognized us as his own, I do not know. He

passed away when he was 72. The last time I saw him was two days before died. He

had a bit of a cold, but certainly didn't seem ill enough to make me believe we

were going to lose him then. But as I'd said for a long time before that, we'd

lost Dad long ago. I'm not sure if it made it easier when the rest of him was

gone too.

>

> anyone want to venture a guess as to how much longer, or what's next with my

wife (Kay, age 60 in june) ? perhaps you more experienced caregivers or those

that have already lost your loved ones? here is the history. from 2008-2010

kay seemed fine with II diabetes and FMS. was walking , driving, working, etc.

at work (teacher assist) she started having memory problems, couldn't find

materials, talked to herself. she quit her job in 2008 when summer came. also

she came to pick me up at a golf course and ended up driving our very small car

onto the golf cart road where they escorted her w/ car to clubhouse. still

seemed like something that was just an accident and funny, at the time. 2010.

1) exhibited delusion and major depression- in 4 hospitals till they convinced

me ECT was harmless and was only thing now to stop depression and delusion- she

wasn't the same since.2.) now in wheelchair 3.)wears diapers but i set timer to

avoid more work 4.)watches tv most the day- i take her outside to sit in sun or

go to drs. and lab 5.) delusions/ depression/ and sleep are under control with

meds 6.)legs getting weaker, can't walk but i can stand her up on legs for

transfers to potty, wheelchair, etc. 7.)losing ability to use fork and spoon,

forget a knife- i'm having to feed her myself more now 8.) starting to wave at

herself in mirror every now and then. says she knows it's her but i don't think

so.9.) i ask her name and she will say " what's your name? " hard to get her to

say her own name. 10.) looked at a picture of our family and only could name me,

not herself or two daughters. 11.) she called me Peanut once, that is our dog.

12.)she does smile and laugh a lot and likes music, cards, and pictures and

sleeps well, and enjoys the sun outside. she even said hello once to people

walking by. 13.) gaining weight from 160-170 to 190 lbs ,5' 9 " - appetite fine

14.) FMS symptoms have seemed to disappear. i have asked the various

doctors: primary, neurologist, psychiatrist- but they don't like to set dates.

i finally got her treating doctor to tell me he thinks Kay's case may run 8

years from start to finish. you new people can use my info. as a guideline to

how things have gone downhill for us in 4 years. every case is different. God

Bless You All..... (husband, 60 )

>

[Guest guest]

Hello: My crystal ball is in the shop also! My husband is 66, still at

home. I have read anywhere from 5 to 7 years to 7 to 12 years. I have not

heard if it is from onset of symptoms or from diagnosis. I have read

" stages of LBD " listed on the web site. That is helpful to me. I have read

it, and my husband is between stage 4 and 5, he has stuff going on in both

stages. I appreciate that guideline. I should re-view it again since my

" husband blew a gasket " the other day (as I put it) he was not himself on

Thursday.

I am sorry I can't tell you how long. I can check when my crystal ball

comes back from the shop! LOL

Vivian

(husband dx with PD 2006, LBD 2010, age 66)

> **

>

>

> I am new to the journey and I think everyone who comes to this list

> has

> the same question " how long? " I did. I was told 5 years to 20 years.

> There are those on this list who are going strong after 10 and others who

> died after and yet another who told me she lost her husband after 15. I

> don't think there is a set answer. We all wish there was. It sounds like

> the disease is progressing rapidly with your wife, going from functioning 5

> years ago to nearly full assistance with ADL in such a short time. Good

> luck.

>

> (57)

>

> Monroe WA

>

> Husband Len (63) dx Parkinson's 2011, dx LBD January 2012

>

> From: LBDcaregivers [mailto:LBDcaregivers ]

> On Behalf Of gary.s.dale@...

> Sent: Sunday, April 15, 2012 11:49 AM

> To: LBDcaregivers

> Subject: What Stage/ How Long ?

>

>

> anyone want to venture a guess as to how much longer, or what's next with

> my

> wife (Kay, age 60 in june) ? perhaps you more experienced caregivers or

> those that have already lost your loved ones? here is the history. from

> 2008-2010 kay seemed fine with II diabetes and FMS. was walking , driving,

> working, etc. at work (teacher assist) she started having memory problems,

> couldn't find materials, talked to herself. she quit her job in 2008 when

> summer came. also she came to pick me up at a golf course and ended up

> driving our very small car onto the golf cart road where they escorted her

> w/ car to clubhouse. still seemed like something that was just an accident

> and funny, at the time. 2010. 1) exhibited delusion and major depression-

> in

> 4 hospitals till they convinced me ECT was harmless and was only thing now

> to stop depression and delusion- she wasn't the same since.2.) now in

> wheelchair 3.)wears diapers but i set timer to avoid more work 4.)watches

> tv

> most the day- i take her outside to sit in sun or go to drs. and lab 5.)

> delusions/ depression/ and sleep are under control with meds 6.)legs

> getting

> weaker, can't walk but i can stand her up on legs for transfers to potty,

> wheelchair, etc. 7.)losing ability to use fork and spoon, forget a knife-

> i'm having to feed her myself more now 8.) starting to wave at herself in

> mirror every now and then. says she knows it's her but i don't think so.9.)

> i ask her name and she will say " what's your name? " hard to get her to say

> her own name. 10.) looked at a picture of our family and only could name

> me,

> not herself or two daughters. 11.) she called me Peanut once, that is our

> dog. 12.)she does smile and laugh a lot and likes music, cards, and

> pictures

> and sleeps well, and enjoys the sun outside. she even said hello once to

> people walking by. 13.) gaining weight from 160-170 to 190 lbs ,5' 9 " -

> appetite fine 14.) FMS symptoms have seemed to disappear. i have asked the

> various doctors: primary, neurologist, psychiatrist- but they don't like to

> set dates. i finally got her treating doctor to tell me he thinks Kay's

> case

> may run 8 years from start to finish. you new people can use my info. as a

> guideline to how things have gone downhill for us in 4 years. every case is

> different. God Bless You All..... (husband, 60 )

>

>

[Guest guest]

Hello: My crystal ball is in the shop also! My husband is 66, still at

home. I have read anywhere from 5 to 7 years to 7 to 12 years. I have not

heard if it is from onset of symptoms or from diagnosis. I have read

" stages of LBD " listed on the web site. That is helpful to me. I have read

it, and my husband is between stage 4 and 5, he has stuff going on in both

stages. I appreciate that guideline. I should re-view it again since my

" husband blew a gasket " the other day (as I put it) he was not himself on

Thursday.

I am sorry I can't tell you how long. I can check when my crystal ball

comes back from the shop! LOL

Vivian

(husband dx with PD 2006, LBD 2010, age 66)

> **

>

>

> I am new to the journey and I think everyone who comes to this list

> has

> the same question " how long? " I did. I was told 5 years to 20 years.

> There are those on this list who are going strong after 10 and others who

> died after and yet another who told me she lost her husband after 15. I

> don't think there is a set answer. We all wish there was. It sounds like

> the disease is progressing rapidly with your wife, going from functioning 5

> years ago to nearly full assistance with ADL in such a short time. Good

> luck.

>

> (57)

>

> Monroe WA

>

> Husband Len (63) dx Parkinson's 2011, dx LBD January 2012

>

> From: LBDcaregivers [mailto:LBDcaregivers ]

> On Behalf Of gary.s.dale@...

> Sent: Sunday, April 15, 2012 11:49 AM

> To: LBDcaregivers

> Subject: What Stage/ How Long ?

>

>

> anyone want to venture a guess as to how much longer, or what's next with

> my

> wife (Kay, age 60 in june) ? perhaps you more experienced caregivers or

> those that have already lost your loved ones? here is the history. from

> 2008-2010 kay seemed fine with II diabetes and FMS. was walking , driving,

> working, etc. at work (teacher assist) she started having memory problems,

> couldn't find materials, talked to herself. she quit her job in 2008 when

> summer came. also she came to pick me up at a golf course and ended up

> driving our very small car onto the golf cart road where they escorted her

> w/ car to clubhouse. still seemed like something that was just an accident

> and funny, at the time. 2010. 1) exhibited delusion and major depression-

> in

> 4 hospitals till they convinced me ECT was harmless and was only thing now

> to stop depression and delusion- she wasn't the same since.2.) now in

> wheelchair 3.)wears diapers but i set timer to avoid more work 4.)watches

> tv

> most the day- i take her outside to sit in sun or go to drs. and lab 5.)

> delusions/ depression/ and sleep are under control with meds 6.)legs

> getting

> weaker, can't walk but i can stand her up on legs for transfers to potty,

> wheelchair, etc. 7.)losing ability to use fork and spoon, forget a knife-

> i'm having to feed her myself more now 8.) starting to wave at herself in

> mirror every now and then. says she knows it's her but i don't think so.9.)

> i ask her name and she will say " what's your name? " hard to get her to say

> her own name. 10.) looked at a picture of our family and only could name

> me,

> not herself or two daughters. 11.) she called me Peanut once, that is our

> dog. 12.)she does smile and laugh a lot and likes music, cards, and

> pictures

> and sleeps well, and enjoys the sun outside. she even said hello once to

> people walking by. 13.) gaining weight from 160-170 to 190 lbs ,5' 9 " -

> appetite fine 14.) FMS symptoms have seemed to disappear. i have asked the

> various doctors: primary, neurologist, psychiatrist- but they don't like to

> set dates. i finally got her treating doctor to tell me he thinks Kay's

> case

> may run 8 years from start to finish. you new people can use my info. as a

> guideline to how things have gone downhill for us in 4 years. every case is

> different. God Bless You All..... (husband, 60 )

>

>

[Guest guest]

Dear Judy,

Very well said! Just when you think it can't get worse... it does....

, I wish I could help you predict how things will go, but I can't... All we

can do is to try to make their journey as painless as possible, and for our own

mental health, try to have a sense of humor about life. (I'm not always

successful with that last part, but I try.)

Wishing everyone a good week ahead,

Helene in NY

(Mom 78, 12 years LBD - late stage)

>

> **

>

>

> I am new to the journey and I think everyone who comes to this list has

> the same question " how long? " I did. I was told 5 years to 20 years.

> There are those on this list who are going strong after 10 and others who

> died after and yet another who told me she lost her husband after 15. I

> don't think there is a set answer. We all wish there was. It sounds like

> the disease is progressing rapidly with your wife, going from functioning 5

> years ago to nearly full assistance with ADL in such a short time. Good

> luck.

>

> (57)

>

> Monroe WA

>

> Husband Len (63) dx Parkinson's 2011, dx LBD January 2012

>

> From: LBDcaregivers [mailto:LBDcaregivers ]

> On Behalf Of gary.s.dale@...

> Sent: Sunday, April 15, 2012 11:49 AM

> To: LBDcaregivers

> Subject: What Stage/ How Long ?

>

> anyone want to venture a guess as to how much longer, or what's next with my

> wife (Kay, age 60 in june) ? perhaps you more experienced caregivers or

> those that have already lost your loved ones? here is the history. from

> 2008-2010 kay seemed fine with II diabetes and FMS. was walking , driving,

> working, etc. at work (teacher assist) she started having memory problems,

> couldn't find materials, talked to herself. she quit her job in 2008 when

> summer came. also she came to pick me up at a golf course and ended up

> driving our very small car onto the golf cart road where they escorted her

> w/ car to clubhouse. still seemed like something that was just an accident

> and funny, at the time. 2010. 1) exhibited delusion and major depression- in

> 4 hospitals till they convinced me ECT was harmless and was only thing now

> to stop depression and delusion- she wasn't the same since.2.) now in

> wheelchair 3.)wears diapers but i set timer to avoid more work 4.)watches tv

> most the day- i take her outside to sit in sun or go to drs. and lab 5.)

> delusions/ depression/ and sleep are under control with meds 6.)legs getting

> weaker, can't walk but i can stand her up on legs for transfers to potty,

> wheelchair, etc. 7.)losing ability to use fork and spoon, forget a knife-

> i'm having to feed her myself more now 8.) starting to wave at herself in

> mirror every now and then. says she knows it's her but i don't think so.9.)

> i ask her name and she will say " what's your name? " hard to get her to say

> her own name. 10.) looked at a picture of our family and only could name me,

> not herself or two daughters. 11.) she called me Peanut once, that is our

> dog. 12.)she does smile and laugh a lot and likes music, cards, and pictures

> and sleeps well, and enjoys the sun outside. she even said hello once to

> people walking by. 13.) gaining weight from 160-170 to 190 lbs ,5' 9 " -

> appetite fine 14.) FMS symptoms have seemed to disappear. i have asked the

> various doctors: primary, neurologist, psychiatrist- but they don't like to

> set dates. i finally got her treating doctor to tell me he thinks Kay's case

> may run 8 years from start to finish. you new people can use my info. as a

> guideline to how things have gone downhill for us in 4 years. every case is

> different. God Bless You All..... (husband, 60 )

>

>

[Guest guest]

Dear Judy,

Very well said! Just when you think it can't get worse... it does....

, I wish I could help you predict how things will go, but I can't... All we

can do is to try to make their journey as painless as possible, and for our own

mental health, try to have a sense of humor about life. (I'm not always

successful with that last part, but I try.)

Wishing everyone a good week ahead,

Helene in NY

(Mom 78, 12 years LBD - late stage)

>

> **

>

>

> I am new to the journey and I think everyone who comes to this list has

> the same question " how long? " I did. I was told 5 years to 20 years.

> There are those on this list who are going strong after 10 and others who

> died after and yet another who told me she lost her husband after 15. I

> don't think there is a set answer. We all wish there was. It sounds like

> the disease is progressing rapidly with your wife, going from functioning 5

> years ago to nearly full assistance with ADL in such a short time. Good

> luck.

>

> (57)

>

> Monroe WA

>

> Husband Len (63) dx Parkinson's 2011, dx LBD January 2012

>

> From: LBDcaregivers [mailto:LBDcaregivers ]

> On Behalf Of gary.s.dale@...

> Sent: Sunday, April 15, 2012 11:49 AM

> To: LBDcaregivers

> Subject: What Stage/ How Long ?

>

> anyone want to venture a guess as to how much longer, or what's next with my

> wife (Kay, age 60 in june) ? perhaps you more experienced caregivers or

> those that have already lost your loved ones? here is the history. from

> 2008-2010 kay seemed fine with II diabetes and FMS. was walking , driving,

> working, etc. at work (teacher assist) she started having memory problems,

> couldn't find materials, talked to herself. she quit her job in 2008 when

> summer came. also she came to pick me up at a golf course and ended up

> driving our very small car onto the golf cart road where they escorted her

> w/ car to clubhouse. still seemed like something that was just an accident

> and funny, at the time. 2010. 1) exhibited delusion and major depression- in

> 4 hospitals till they convinced me ECT was harmless and was only thing now

> to stop depression and delusion- she wasn't the same since.2.) now in

> wheelchair 3.)wears diapers but i set timer to avoid more work 4.)watches tv

> most the day- i take her outside to sit in sun or go to drs. and lab 5.)

> delusions/ depression/ and sleep are under control with meds 6.)legs getting

> weaker, can't walk but i can stand her up on legs for transfers to potty,

> wheelchair, etc. 7.)losing ability to use fork and spoon, forget a knife-

> i'm having to feed her myself more now 8.) starting to wave at herself in

> mirror every now and then. says she knows it's her but i don't think so.9.)

> i ask her name and she will say " what's your name? " hard to get her to say

> her own name. 10.) looked at a picture of our family and only could name me,

> not herself or two daughters. 11.) she called me Peanut once, that is our

> dog. 12.)she does smile and laugh a lot and likes music, cards, and pictures

> and sleeps well, and enjoys the sun outside. she even said hello once to

> people walking by. 13.) gaining weight from 160-170 to 190 lbs ,5' 9 " -

> appetite fine 14.) FMS symptoms have seemed to disappear. i have asked the

> various doctors: primary, neurologist, psychiatrist- but they don't like to

> set dates. i finally got her treating doctor to tell me he thinks Kay's case

> may run 8 years from start to finish. you new people can use my info. as a

> guideline to how things have gone downhill for us in 4 years. every case is

> different. God Bless You All..... (husband, 60 )

>

>

[Guest guest]

,

I cannot add anything more than the wisdom others have posted. My feeling is

that since Lewy was only identified as a separate dementia in 1996, we don't

have the history. In addition, it is very difficult to secure an accurate DX of

Lewy, while mixed dementias involving Lewy components can often confound the

picture.

Having said that you might find the following link from Columbia University

Medical Center of value. I recently plugged in my estimates based upon my

observations and knowledge of Kathy's progression prior too and since her LewyDX

to generate a primitive prediction of sorts. Last week she had a routine follow

up with her geriatrician who specializes in dementias and he agreed the results

were consistent to what he has observed in his practice.

http://www.cumc.columbia.edu/dept/sergievsky/predictor.html

 

I can't remember where I saw this link to give proper credit. Some thoughful

person posted it on one of the various sites I follow.

Very best of luck to you.

Jeff 

When you feel like giving up, remember why you held on for so long in the first

place. " ~ Unknown

>________________________________

>

>To: LBDcaregivers

>Sent: Sunday, April 15, 2012 2:49 PM

>Subject: What Stage/ How Long ?

>

>

> 

>anyone want to venture a guess as to how much longer, or what's next with my

wife (Kay, age 60 in june) ? perhaps you more experienced caregivers or those

that have already lost your loved ones? here is the history. from 2008-2010

kay seemed fine with II diabetes and FMS. was walking , driving, working, etc.

at work (teacher assist) she started having memory problems, couldn't find

materials, talked to herself. she quit her job in 2008 when summer came. also

she came to pick me up at a golf course and ended up driving our very small car

onto the golf cart road where they escorted her w/ car to clubhouse. still

seemed like something that was just an accident and funny, at the time. 2010.

1) exhibited delusion and major depression- in 4 hospitals till they convinced

me ECT was harmless and was only thing now to stop depression and delusion- she

wasn't the same since.2.) now in wheelchair 3.)wears diapers but i set timer to

avoid more work

4.)watches tv most the day- i take her outside to sit in sun or go to drs. and

lab 5.) delusions/ depression/ and sleep are under control with meds 6.)legs

getting weaker, can't walk but i can stand her up on legs for transfers to

potty, wheelchair, etc. 7.)losing ability to use fork and spoon, forget a knife-

i'm having to feed her myself more now 8.) starting to wave at herself in mirror

every now and then. says she knows it's her but i don't think so.9.) i ask her

name and she will say " what's your name? " hard to get her to say her own name.

10.) looked at a picture of our family and only could name me, not herself or

two daughters. 11.) she called me Peanut once, that is our dog. 12.)she does

smile and laugh a lot and likes music, cards, and pictures and sleeps well, and

enjoys the sun outside. she even said hello once to people walking by. 13.)

gaining weight from 160-170 to 190 lbs ,5' 9 " - appetite fine 14.) FMS symptoms

have seemed to

disappear. i have asked the various doctors: primary, neurologist,

psychiatrist- but they don't like to set dates. i finally got her treating

doctor to tell me he thinks Kay's case may run 8 years from start to finish.

you new people can use my info. as a guideline to how things have gone downhill

for us in 4 years. every case is different. God Bless You All.....

(husband, 60 )

>

>

>

>

>

[Guest guest]

,

I cannot add anything more than the wisdom others have posted. My feeling is

that since Lewy was only identified as a separate dementia in 1996, we don't

have the history. In addition, it is very difficult to secure an accurate DX of

Lewy, while mixed dementias involving Lewy components can often confound the

picture.

Having said that you might find the following link from Columbia University

Medical Center of value. I recently plugged in my estimates based upon my

observations and knowledge of Kathy's progression prior too and since her LewyDX

to generate a primitive prediction of sorts. Last week she had a routine follow

up with her geriatrician who specializes in dementias and he agreed the results

were consistent to what he has observed in his practice.

http://www.cumc.columbia.edu/dept/sergievsky/predictor.html

 

I can't remember where I saw this link to give proper credit. Some thoughful

person posted it on one of the various sites I follow.

Very best of luck to you.

Jeff 

When you feel like giving up, remember why you held on for so long in the first

place. " ~ Unknown

>________________________________

>

>To: LBDcaregivers

>Sent: Sunday, April 15, 2012 2:49 PM

>Subject: What Stage/ How Long ?

>

>

> 

>anyone want to venture a guess as to how much longer, or what's next with my

wife (Kay, age 60 in june) ? perhaps you more experienced caregivers or those

that have already lost your loved ones? here is the history. from 2008-2010

kay seemed fine with II diabetes and FMS. was walking , driving, working, etc.

at work (teacher assist) she started having memory problems, couldn't find

materials, talked to herself. she quit her job in 2008 when summer came. also

she came to pick me up at a golf course and ended up driving our very small car

onto the golf cart road where they escorted her w/ car to clubhouse. still

seemed like something that was just an accident and funny, at the time. 2010.

1) exhibited delusion and major depression- in 4 hospitals till they convinced

me ECT was harmless and was only thing now to stop depression and delusion- she

wasn't the same since.2.) now in wheelchair 3.)wears diapers but i set timer to

avoid more work

4.)watches tv most the day- i take her outside to sit in sun or go to drs. and

lab 5.) delusions/ depression/ and sleep are under control with meds 6.)legs

getting weaker, can't walk but i can stand her up on legs for transfers to

potty, wheelchair, etc. 7.)losing ability to use fork and spoon, forget a knife-

i'm having to feed her myself more now 8.) starting to wave at herself in mirror

every now and then. says she knows it's her but i don't think so.9.) i ask her

name and she will say " what's your name? " hard to get her to say her own name.

10.) looked at a picture of our family and only could name me, not herself or

two daughters. 11.) she called me Peanut once, that is our dog. 12.)she does

smile and laugh a lot and likes music, cards, and pictures and sleeps well, and

enjoys the sun outside. she even said hello once to people walking by. 13.)

gaining weight from 160-170 to 190 lbs ,5' 9 " - appetite fine 14.) FMS symptoms

have seemed to

disappear. i have asked the various doctors: primary, neurologist,

psychiatrist- but they don't like to set dates. i finally got her treating

doctor to tell me he thinks Kay's case may run 8 years from start to finish.

you new people can use my info. as a guideline to how things have gone downhill

for us in 4 years. every case is different. God Bless You All.....

(husband, 60 )

>

>

>

>

>

[Guest guest]

thanks Jeff and everyone.  i will check out that web link you posted ,Jeff.

thanks. i didn't really expect anyone to really know the LBD length, etc. it

will be different for each of us, but we are all in the same boat- helps to know

people are rowing with me.  i will hang on.   gary  (wife  Kay, probable

LBD)

Subject: Re: What Stage/ How Long ?

To: " LBDcaregivers " <LBDcaregivers >

Date: Monday, April 16, 2012, 4:46 AM

 

,

I cannot add anything more than the wisdom others have posted. My feeling is

that since Lewy was only identified as a separate dementia in 1996, we don't

have the history. In addition, it is very difficult to secure an accurate DX of

Lewy, while mixed dementias involving Lewy components can often confound the

picture.

Having said that you might find the following link from Columbia University

Medical Center of value. I recently plugged in my estimates based upon my

observations and knowledge of Kathy's progression prior too and since her LewyDX

to generate a primitive prediction of sorts. Last week she had a routine follow

up with her geriatrician who specializes in dementias and he agreed the results

were consistent to what he has observed in his practice.

http://www.cumc.columbia.edu/dept/sergievsky/predictor.html

 

I can't remember where I saw this link to give proper credit. Some thoughful

person posted it on one of the various sites I follow.

Very best of luck to you.

Jeff 

When you feel like giving up, remember why you held on for so long in the first

place. " ~ Unknown

>________________________________

>

>To: LBDcaregivers

>Sent: Sunday, April 15, 2012 2:49 PM

>Subject: What Stage/ How Long ?

>

>

> 

>anyone want to venture a guess as to how much longer, or what's next with my

wife (Kay, age 60 in june) ? perhaps you more experienced caregivers or those

that have already lost your loved ones? here is the history. from 2008-2010 kay

seemed fine with II diabetes and FMS. was walking , driving, working, etc. at

work (teacher assist) she started having memory problems, couldn't find

materials, talked to herself. she quit her job in 2008 when summer came. also

she came to pick me up at a golf course and ended up driving our very small car

onto the golf cart road where they escorted her w/ car to clubhouse. still

seemed like something that was just an accident and funny, at the time. 2010. 1)

exhibited delusion and major depression- in 4 hospitals till they convinced me

ECT was harmless and was only thing now to stop depression and delusion- she

wasn't the same since.2.) now in wheelchair 3.)wears diapers but i set timer to

avoid more work

4.)watches tv most the day- i take her outside to sit in sun or go to drs. and

lab 5.) delusions/ depression/ and sleep are under control with meds 6.)legs

getting weaker, can't walk but i can stand her up on legs for transfers to

potty, wheelchair, etc. 7.)losing ability to use fork and spoon, forget a knife-

i'm having to feed her myself more now 8.) starting to wave at herself in mirror

every now and then. says she knows it's her but i don't think so.9.) i ask her

name and she will say " what's your name? " hard to get her to say her own name.

10.) looked at a picture of our family and only could name me, not herself or

two daughters. 11.) she called me Peanut once, that is our dog. 12.)she does

smile and laugh a lot and likes music, cards, and pictures and sleeps well, and

enjoys the sun outside. she even said hello once to people walking by. 13.)

gaining weight from 160-170 to 190 lbs ,5' 9 " - appetite fine 14.) FMS symptoms

have seemed to

disappear. i have asked the various doctors: primary, neurologist, psychiatrist-

but they don't like to set dates. i finally got her treating doctor to tell me

he thinks Kay's case may run 8 years from start to finish. you new people can

use my info. as a guideline to how things have gone downhill for us in 4 years.

every case is different. God Bless You All..... (husband, 60 )

>

>

>

>

>