Re: Causes of LBD

[Guest guest]

My dad's 79 and was just diagnosed. I know the life expectancy is 5-7 years

from what I read online. I'm sure there's a difference between 60 year olds

& 80 year olds. Do you guys know? Sorry - I'm still trying to predict what

I'm in for.

Many blessings,

Mara

_____

From: LBDcaregivers [mailto:LBDcaregivers ]

On Behalf Of Dempsey

Sent: Thursday, August 18, 2005 7:00 PM

To: LBDcaregivers

Subject: Causes of LBD

While I was constructing a message to you all about my Dad for the list of

possible common denominators of LBD, I couldn't help but think something

was missing (for me anyway).

Forgive me for this .. but my Dad is still alive and I can't help but wonder

how much longer we may have with him. Could we add a question to the survey

that looks at the length of the disease? In otherwords, for those who have

lost their LO's could you tell us the time period from diagnosis to the end?

Also, I would surely appreciate knowing what, if anything, struck you at or

near the end that would be helpful to those of us still in the midst of

this.

I live in Missouri and my Dad is in Michigan. I want to be with him every

minute but can't. But, I sure want a chance to say goodbye and would like

to be with him at the end. If I knew of any warning signs I could jump in

the car and be there in 12 hours....

Thanks for understanding.

[Guest guest]

Please do not try as each individual is different.

Simmel

>

>Reply-To: LBDcaregivers

>To: <LBDcaregivers >

>Subject: RE: Causes of LBD

>Date: Thu, 18 Aug 2005 19:46:57 -0400

>

>My dad's 79 and was just diagnosed. I know the life expectancy is 5-7

>years

>from what I read online. I'm sure there's a difference between 60 year

>olds

> & 80 year olds. Do you guys know? Sorry - I'm still trying to predict

>what

>I'm in for.

>

>

>

>Many blessings,

>

>Mara

>

>

>

>

>

> _____

>

>From: LBDcaregivers [mailto:LBDcaregivers ]

>On Behalf Of Dempsey

>Sent: Thursday, August 18, 2005 7:00 PM

>To: LBDcaregivers

>Subject: Causes of LBD

>

>

>

>While I was constructing a message to you all about my Dad for the list of

>possible common denominators of LBD, I couldn't help but think something

>was missing (for me anyway).

>

>Forgive me for this .. but my Dad is still alive and I can't help but

>wonder

>how much longer we may have with him. Could we add a question to the

>survey

>that looks at the length of the disease? In otherwords, for those who have

>lost their LO's could you tell us the time period from diagnosis to the

>end?

>

>Also, I would surely appreciate knowing what, if anything, struck you at or

>near the end that would be helpful to those of us still in the midst of

>this.

>

>I live in Missouri and my Dad is in Michigan. I want to be with him every

>minute but can't. But, I sure want a chance to say goodbye and would like

>to be with him at the end. If I knew of any warning signs I could jump in

>the car and be there in 12 hours....

>

>Thanks for understanding.

>

>

[Guest guest]

Mara:

I find that one of the confusing things in the statistics is when they

say 5-7 years form onset, how exactly do you determine onset. My Mum

had minor AD & PD symptoms 5 years ago. The definative LBD symptoms

(hallucinations, shuffling gait) where triggered 6 months ago. What is

considered the onset? When do we start counting years?

--- Mara Herzberger wrote:

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

My dad's 79 and was just diagnosed. I know the life expectancy is 5-7

years

from what I read online. I'm sure there's a difference between 60 year

olds

& 80 year olds. Do you guys know? Sorry - I'm still trying to predict

what

I'm in for.

Many blessings,

Mara

_____

From: LBDcaregivers

[mailto:LBDcaregivers ]

On Behalf Of Dempsey

Sent: Thursday, August 18, 2005 7:00 PM

To: LBDcaregivers

Subject: Causes of LBD

While I was constructing a message to you all about my Dad for the list

of

possible common denominators of LBD, I couldn't help but think

something

was missing (for me anyway).

Forgive me for this .. but my Dad is still alive and I can't help but

wonder

how much longer we may have with him. Could we add a question to the

survey

that looks at the length of the disease? In otherwords, for those who

have

lost their LO's could you tell us the time period from diagnosis to the

end?

Also, I would surely appreciate knowing what, if anything, struck you

at or

near the end that would be helpful to those of us still in the midst of

this.

I live in Missouri and my Dad is in Michigan. I want to be with him

every

minute but can't. But, I sure want a chance to say goodbye and would

like

to be with him at the end. If I knew of any warning signs I could jump

in

the car and be there in 12 hours....

Thanks for understanding.

[Guest guest]

I have been asking the same question regarding a time line of what to expect.

Unfortunately, no one has been able to give a guide to the progression of the

disease as it seems to be different for each individual.

Knowing some type of time line would allow me to be better prepared to deal with

the future....

God bless,

Cheryl

Causes of LBD

While I was constructing a message to you all about my Dad for the list of

possible common denominators of LBD, I couldn't help but think something

was missing (for me anyway).

Forgive me for this .. but my Dad is still alive and I can't help but wonder

how much longer we may have with him. Could we add a question to the survey

that looks at the length of the disease? In otherwords, for those who have

lost their LO's could you tell us the time period from diagnosis to the end?

Also, I would surely appreciate knowing what, if anything, struck you at or

near the end that would be helpful to those of us still in the midst of

this.

I live in Missouri and my Dad is in Michigan. I want to be with him every

minute but can't. But, I sure want a chance to say goodbye and would like

to be with him at the end. If I knew of any warning signs I could jump in

the car and be there in 12 hours....

Thanks for understanding.

[Guest guest]

,

Where in Michigan is your Dad? I am in Howell, MI. My Father-in-law is in

Florida and was diagnosed with LBD in April of this year. He has had

parkinson's for nearly 10 years. They have taken him off all parkinson's med's

just recently. He was admitted into the hospital last night with phnemonia in

both lungs again.

I am new to the group but I know there are a couple of others from Michigan as

well.

Jo

Dempsey wrote:

While I was constructing a message to you all about my Dad for the list of

possible common denominators of LBD, I couldn't help but think something was

missing (for me anyway).

Forgive me for this .. but my Dad is still alive and I can't help but wonder how

much longer we may have with him. Could we add a question to the survey that

looks at the length of the disease? In otherwords, for those who have lost

their LO's could you tell us the time period from diagnosis to the end?

Also, I would surely appreciate knowing what, if anything, struck you at or near

the end that would be helpful to those of us still in the midst of this.

I live in Missouri and my Dad is in Michigan. I want to be with him every

minute but can't. But, I sure want a chance to say goodbye and would like to be

with him at the end. If I knew of any warning signs I could jump in the car and

be there in 12 hours....

Thanks for understanding.

[Guest guest]

Mara-

My Dad will be 88 on Oct. 19. He is in the end stage o LBD. He has been

diagnosed for about 3 years now. However, I am sure it was going on for many

years. Some indications are as follows: In 1998, he had surgery and was

totally off the wall from the pain medication and other sedation. He was so bad

that they were afraid to transfer him out of ICU. Also for years prior to that

he quite a few falls. . We just thought he was a clutz (sp). I use to beg him

to stay off his bike, but he never listened. Another thing that happened was

that when my Dad took a dip in our community pool, he lost his perception as to

where he was in the water. He slipped in the 3 feet of water and couldn't

recover. Someone had tocome to his rescue. Then in August 2001 came the big

one! Dad fell in the garage. We are not sure what happened, but the garage

looked like there was a massacre. The floor was drenched. There was a trail of

blood through the house and bathroom. All the chairs in the den were also

covered with blood. My Dad was found unconsciious by my Mother. Dad suffered a

basal skulll fracture which is a major head tramua. He spend 4 months in vaious

hospitals. He fell again in Jan 2002.. This time it was a subdural hematoma.

We still did not know at this point that LBD was the culprit. Another thing

that was prominent over the years was knee/joint stiffness. It was painful

just to watch him get out of his car. About 2 years ago, we took him to an

orthopedic Dr. for his knee pain. Much to our surprise, there was no signs of

arthiritis in his joints. I think it was the LBD doing its thing. The tremors

appeared around the time of diagnosis. I think the LBD was lurching around for

aprx. 15 years. Writing all this makes me think, why didn't I see this coming?

Although my Dad fell from time to time and there were other incidents, I think

my Dad led a a pretty good and active life up until the time of the big fall.

I hope this gives you some insight at the time frame. I wonder if there

really is any.

Best wishes to you and your Dad. I can tell he is very lucky to have you.

Gerry Deverell

Wilmington, Delaware

Causes of LBD

While I was constructing a message to you all about my Dad for the list of

possible common denominators of LBD, I couldn't help but think something

was missing (for me anyway).

Forgive me for this .. but my Dad is still alive and I can't help but wonder

how much longer we may have with him. Could we add a question to the survey

that looks at the length of the disease? In otherwords, for those who have

lost their LO's could you tell us the time period from diagnosis to the end?

Also, I would surely appreciate knowing what, if anything, struck you at or

near the end that would be helpful to those of us still in the midst of

this.

I live in Missouri and my Dad is in Michigan. I want to be with him every

minute but can't. But, I sure want a chance to say goodbye and would like

to be with him at the end. If I knew of any warning signs I could jump in

the car and be there in 12 hours....

Thanks for understanding.

[Guest guest]

Jo,

The world keeps getting smaller, eh??

My Dad is in Court Dementia Assisted Living Facility in Brighton (near

the Target on Grand River). And, my mom lives in her condo in South Lyon.

Re: Causes of LBD

,

Where in Michigan is your Dad? I am in Howell, MI. My Father-in-law is in

Florida and was diagnosed with LBD in April of this year. He has had

parkinson's for nearly 10 years. They have taken him off all parkinson's med's

just recently. He was admitted into the hospital last night with phnemonia in

both lungs again.

I am new to the group but I know there are a couple of others from Michigan as

well.

Jo

Dempsey wrote:

While I was constructing a message to you all about my Dad for the list of

possible common denominators of LBD, I couldn't help but think something was

missing (for me anyway).

Forgive me for this .. but my Dad is still alive and I can't help but wonder

how much longer we may have with him. Could we add a question to the survey

that looks at the length of the disease? In otherwords, for those who have lost

their LO's could you tell us the time period from diagnosis to the end?

Also, I would surely appreciate knowing what, if anything, struck you at or

near the end that would be helpful to those of us still in the midst of this.

I live in Missouri and my Dad is in Michigan. I want to be with him every

minute but can't. But, I sure want a chance to say goodbye and would like to be

with him at the end. If I knew of any warning signs I could jump in the car and

be there in 12 hours....

Thanks for understanding.

[Guest guest]

Great question . My dad was diagnosed w/ Parkinson's in 1998 --

w/ LBD this spring (after I brought it up). However, LBD symptoms

clearly began showing up last summer -- maybe a bit before that, but

those were much more subtle. So when is onset?

Lori

>

>

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

> My dad's 79 and was just diagnosed. I know the life expectancy is

5-7

> years

> from what I read online. I'm sure there's a difference between 60

year

> olds

> & 80 year olds. Do you guys know? Sorry - I'm still trying to

predict

> what

> I'm in for.

>

>

>

> Many blessings,

>

> Mara

>

>

>

>

>

> _____

>

> From: LBDcaregivers

> [mailto:LBDcaregivers ]

> On Behalf Of Dempsey

> Sent: Thursday, August 18, 2005 7:00 PM

> To: LBDcaregivers

> Subject: Causes of LBD

>

>

>

> While I was constructing a message to you all about my Dad for the

list

> of

> possible common denominators of LBD, I couldn't help but think

> something

> was missing (for me anyway).

>

> Forgive me for this .. but my Dad is still alive and I can't help

but

> wonder

> how much longer we may have with him. Could we add a question to

the

> survey

> that looks at the length of the disease? In otherwords, for those

who

> have

> lost their LO's could you tell us the time period from diagnosis

to the

> end?

>

> Also, I would surely appreciate knowing what, if anything, struck

you

> at or

> near the end that would be helpful to those of us still in the

midst of

> this.

>

> I live in Missouri and my Dad is in Michigan. I want to be with

him

> every

> minute but can't. But, I sure want a chance to say goodbye and

would

> like

> to be with him at the end. If I knew of any warning signs I could

jump

> in

> the car and be there in 12 hours....

>

> Thanks for understanding.

>

>

[Guest guest]

To those trying to decide how long LBD is and has been going on, it is usually

said 5-7 years from DIAGNOSIS not ONSET.

I should have had Mom to an MD to see what was happening 5 years before I did.

She wasn't living in the same state with me and was living alone. So only those

people who saw her all the time knew how bad things were. I was talking to her

every day by phone, but she was doing well at deceiving me. I didn't realize

how much I carried on the conversation and she could do an answer. I was just

thinking she was " getting older " and it never occured to me how bad her problems

really were.

She did stay with me for extended times during that first 5 years, and again I

just thought at her age, everyone gets forgetful. (she was in her early 80's.)

And when we did finally realize how bad things were, I still got the Alzheimers

diagnosis.

It is so much easier to look back and see how things progressed. Guess the

human spirit, (mine) wants to deny things could be all that bad. When she died

in '02, I finally got a look at her paper work and other things she did and

realize how things had progressed.

I imagine lots of others could " look back " and see things much more clearly too.

Donna R

Re: Causes of LBD