Re: Exciting news on the LBD Stages Project!

[Guest guest]

Hi, ,

Thank you so much for sharing all this with us, and for all your work on the

project. It is truly invaluable. And, thank you Peggy for getting our foot

in the door with the experts. I can't wait to see what happens with it all!

Sending big hugs and much gratitude,

Piper

[Guest guest]

, this is fantastic news. What a wonderful gift to us all and a

lovely tribute to your dad. Thanks for all your work and keeping my fingers

crossed that this information truly gets the respect it deserves and helps

all future LBD sufferers.

Courage

Exciting news on the LBD Stages Project!

>A good friend to everyone here, Peggy, also on the board of the LBD

>Association, sent an e-mail introducing my project to two experts in

>the field of LBD. One is a professor of Neurology at Drexel

>University, Carol Lippa, and the other is the reknown Prof. Ian

>Mc, possibly the foremost expert on LBD. (Also on the list is

>our very own Russ , but I haven't heard any response from him

>in a while. He's a busy guy!)

>

>They have expressed an interest in the project, and have offered to

>meet with us in Philadelphia this summer, while they are attending

>the World Conference on Alzheimer's!!!!

>

>Today I sent an introductory e-mail, along with a summary of the

>project (read it below!), plus the list of questions as it now

>stands (115 questions). I am hoping to hear their initial reaction

>to our project, and make modifications before we meet in July.

>

>I can't tell you how exciting it is to know that we will be

>receiving input from some highly respected experts in LBD! Who

>knows where it will go - possibly straight into the toilet - but

>possibly someplace none of us ever imagined!

>

>Just had to share...

>

>Love to you all,

>

>

>

>

>

>

>Here's the introduction summary...

>

>

>

>LBD Stages Project

>

>Why?

>This project began out of the frustration of caregivers, whose loved

>ones have Lewy Body Dementia (LBD). There is little information

>available to help us prepare for the difficult tightrope that we

>will walk. Yes, there are lists of symptoms, and the ultimate

>prognosis, but nothing to help us chart our way through difficult

>times. LBD varies significantly enough from Alzheimer's (AD), that

>the stages that exist for AD are of little help to the caregiver or

>other family members who need to understand the progression of the

>disease.

>

>We are not alone in needing more information. Many of us have had

>to educate family practice physicians, nurses, and both hospital and

>assisted living/nursing home staff about LBD.

>

>

>What?

>The original purpose of the project was to create a `layman's guide'

>which would identify trends in the progression of LBD, define at

>least 3 stages of the disease, and provide caregivers and families a

>roadmap by which they might anticipate problems and reduce crises,

>and educate them so they can provide useful information to the

>doctors involved. This is not a scientific study, but rather a home-

>grown attempt at something the medical community has yet to provide.

>

>Who?

>The Yahoo Health online bulletin board for LBD caregivers and

>spouses is a network of experienced and novice caregivers who have a

>family member who suffers from LBD. It is a tremendous source of

>support, information, and experience. The LBD Association is also

>participating in the ongoing development of the project.

>

>How?

>A fledgling series of questions was presented for additional input

>to a limited number of caregivers. As more common symptoms were

>identified, the list grew. Ultimately, it totaled over 80

>questions. This list was submitted to the entire Caregiver's Board,

>in addition to the " Spouses Only " Board. Over 40 responses were

>received, entered into a database and reviewed for initial trends.

>As the questions were to be answered " Yes/No " , it did not allow for

>the respondents to indicate severity or changes in frequency. The

>list is being revised now, and a draft version is attached. (It is

>a working copy only, not to be considered complete or final.)

>

>Why Not?

>Granted, there are plenty of variables that make this unscientific.

>Individual respondent's perceptions will vary. The questions might

>be too subjective. The ability to measure progress of the disease,

>by time elapsed, may prove too inaccurate because length of symptoms

>prior to diagnosis, misdiagnosis, delay of patient or their family

>to seek diagnosis, and much more might cause too much inconsistency.

>

>What Could It Be?

>Where this project goes is unknown. Perhaps it stays at the amateur

>level. But perhaps with some exposure to the scientific community,

>it might grow in scope and measurability. Could this list be a

>starting point for researchers? Could it be used to create a

>baseline of stages, and then be refined by someone who can follow

>patients through the entire course of the disease? Can the data be

>gathered by amateurs, but then analyzed by professionals?

>

>What's Next?

>The next step is to get these questions into more knowledgeable

>hands. With input from researchers and medical experts, perhaps

>this project can generate data that is helpful not just to patients,

>families and caregivers, but doctors, researchers and educators as

>well.

>

>I look forward to hearing from you.

>

>(signed my name, and address, with the following below:)

>

>Bruce's story:

>My father had been losing cognitive ability mildly for 5 years, and

>was diagnosed with Mild Cognitive Impairment and REM Sleep Behavior

>Disorder in 2002. I researched both diagnoses, learned more about

>AD and was introduced for the first time to LBD. For two years I

>watched his symptoms closely. Two back surgeries in 2003 seem to

>have increased the progression of the dementia. In March, 2004,

>after neuro-psych testing, his diagnosis was changed to LBD.

>

>This project is for you, Pop.

>

>

>

>

>

>

>Welcome to LBDcaregivers.

>

>

>

[Guest guest]

In a message dated 6/2/2004 9:34:16 PM Central Daylight Time, gaat@...

writes:

, this is fantastic news. What a wonderful gift to us all and a

lovely tribute to your dad. Thanks for all your work and keeping my fingers

crossed that this information truly gets the respect it deserves and helps

all future LBD sufferers.

Courage

Exciting news on the LBD Stages Project!

>A good friend to everyone here, Peggy, also on the board of the LBD

>Association, sent an e-mail introducing my project to two experts in

>the field of LBD. One is a professor of Neurology at Drexel

>University, Carol Lippa, and the other is the reknown Prof. Ian

>Mc, possibly the foremost expert on LBD. (Also on the list is

>our very own Russ , but I haven't heard any response from him

>in a while. He's a busy guy!)

>

>They have expressed an interest in the project, and have offered to

>meet with us in Philadelphia this summer, while they are attending

>the World Conference on Alzheimer's!!!!

>

>Today I sent an introductory e-mail, along with a summary of the

>project (read it below!), plus the list of questions as it now

>stands (115 questions). I am hoping to hear their initial reaction

>to our project, and make modifications before we meet in July.

>

>I can't tell you how exciting it is to know that we will be

>receiving input from some highly respected experts in LBD! Who

>knows where it will go - possibly straight into the toilet - but

>possibly someplace none of us ever imagined!

>

>Just had to share...

>

>Love to you all,

>

>

>

>

>

>

>Here's the introduction summary...

>

>

>

>LBD Stages Project

>

>Why?

>This project began out of the frustration of caregivers, whose loved

>ones have Lewy Body Dementia (LBD). There is little information

>available to help us prepare for the difficult tightrope that we

>will walk. Yes, there are lists of symptoms, and the ultimate

>prognosis, but nothing to help us chart our way through difficult

>times. LBD varies significantly enough from Alzheimer's (AD), that

>the stages that exist for AD are of little help to the caregiver or

>other family members who need to understand the progression of the

>disease.

>

>We are not alone in needing more information. Many of us have had

>to educate family practice physicians, nurses, and both hospital and

>assisted living/nursing home staff about LBD.

>

>

>What?

>The original purpose of the project was to create a `layman's guide'

>which would identify trends in the progression of LBD, define at

>least 3 stages of the disease, and provide caregivers and families a

>roadmap by which they might anticipate problems and reduce crises,

>and educate them so they can provide useful information to the

>doctors involved. This is not a scientific study, but rather a home-

>grown attempt at something the medical community has yet to provide.

>

>Who?

>The Yahoo Health online bulletin board for LBD caregivers and

>spouses is a network of experienced and novice caregivers who have a

>family member who suffers from LBD. It is a tremendous source of

>support, information, and experience. The LBD Association is also

>participating in the ongoing development of the project.

>

>How?

>A fledgling series of questions was presented for additional input

>to a limited number of caregivers. As more common symptoms were

>identified, the list grew. Ultimately, it totaled over 80

>questions. This list was submitted to the entire Caregiver's Board,

>in addition to the " Spouses Only " Board. Over 40 responses were

>received, entered into a database and reviewed for initial trends.

>As the questions were to be answered " Yes/No " , it did not allow for

>the respondents to indicate severity or changes in frequency. The

>list is being revised now, and a draft version is attached. (It is

>a working copy only, not to be considered complete or final.)

>

>Why Not?

>Granted, there are plenty of variables that make this unscientific.

>Individual respondent's perceptions will vary. The questions might

>be too subjective. The ability to measure progress of the disease,

>by time elapsed, may prove too inaccurate because length of symptoms

>prior to diagnosis, misdiagnosis, delay of patient or their family

>to seek diagnosis, and much more might cause too much inconsistency.

>

>What Could It Be?

>Where this project goes is unknown. Perhaps it stays at the amateur

>level. But perhaps with some exposure to the scientific community,

>it might grow in scope and measurability. Could this list be a

>starting point for researchers? Could it be used to create a

>baseline of stages, and then be refined by someone who can follow

>patients through the entire course of the disease? Can the data be

>gathered by amateurs, but then analyzed by professionals?

>

>What's Next?

>The next step is to get these questions into more knowledgeable

>hands. With input from researchers and medical experts, perhaps

>this project can generate data that is helpful not just to patients,

>families and caregivers, but doctors, researchers and educators as

>well.

>

>I look forward to hearing from you.

>

>(signed my name, and address, with the following below:)

>

>Bruce's story:

>My father had been losing cognitive ability mildly for 5 years, and

>was diagnosed with Mild Cognitive Impairment and REM Sleep Behavior

>Disorder in 2002. I researched both diagnoses, learned more about

>AD and was introduced for the first time to LBD. For two years I

>watched his symptoms closely. Two back surgeries in 2003 seem to

>have increased the progression of the dementia. In March, 2004,

>after neuro-psych testing, his diagnosis was changed to LBD.

>

>This project is for you, Pop.

>

>

>

>

>

>

>Welcome to LBDcaregivers.

>

>

oh wow, what a wonderful proposal and plan, as a brandnew member of the group

thank you for putting all of the time and effort into this, i among all the

others that are going to be new in the group do appreciate you, thanks sharon

m

[Guest guest]

and Peggy-

Just have to tell you how wonderful you both are and this is great news!!!!!!

Thank you!

Big Hug-

Sharon

Exciting news on the LBD Stages Project!

A good friend to everyone here, Peggy, also on the board of the LBD

Association, sent an e-mail introducing my project to two experts in

the field of LBD. One is a professor of Neurology at Drexel

University, Carol Lippa, and the other is the reknown Prof. Ian

Mc, possibly the foremost expert on LBD. (Also on the list is

our very own Russ , but I haven't heard any response from him

in a while. He's a busy guy!)

They have expressed an interest in the project, and have offered to

meet with us in Philadelphia this summer, while they are attending

the World Conference on Alzheimer's!!!!

Today I sent an introductory e-mail, along with a summary of the

project (read it below!), plus the list of questions as it now

stands (115 questions). I am hoping to hear their initial reaction

to our project, and make modifications before we meet in July.

I can't tell you how exciting it is to know that we will be

receiving input from some highly respected experts in LBD! Who

knows where it will go - possibly straight into the toilet - but

possibly someplace none of us ever imagined!

Just had to share...

Love to you all,

Here's the introduction summary...

LBD Stages Project

Why?

This project began out of the frustration of caregivers, whose loved

ones have Lewy Body Dementia (LBD). There is little information

available to help us prepare for the difficult tightrope that we

will walk. Yes, there are lists of symptoms, and the ultimate

prognosis, but nothing to help us chart our way through difficult

times. LBD varies significantly enough from Alzheimer's (AD), that

the stages that exist for AD are of little help to the caregiver or

other family members who need to understand the progression of the

disease.

We are not alone in needing more information. Many of us have had

to educate family practice physicians, nurses, and both hospital and

assisted living/nursing home staff about LBD.

What?

The original purpose of the project was to create a `layman's guide'

which would identify trends in the progression of LBD, define at

least 3 stages of the disease, and provide caregivers and families a

roadmap by which they might anticipate problems and reduce crises,

and educate them so they can provide useful information to the

doctors involved. This is not a scientific study, but rather a home-

grown attempt at something the medical community has yet to provide.

Who?

The Yahoo Health online bulletin board for LBD caregivers and

spouses is a network of experienced and novice caregivers who have a

family member who suffers from LBD. It is a tremendous source of

support, information, and experience. The LBD Association is also

participating in the ongoing development of the project.

How?

A fledgling series of questions was presented for additional input

to a limited number of caregivers. As more common symptoms were

identified, the list grew. Ultimately, it totaled over 80

questions. This list was submitted to the entire Caregiver's Board,

in addition to the " Spouses Only " Board. Over 40 responses were

received, entered into a database and reviewed for initial trends.

As the questions were to be answered " Yes/No " , it did not allow for

the respondents to indicate severity or changes in frequency. The

list is being revised now, and a draft version is attached. (It is

a working copy only, not to be considered complete or final.)

Why Not?

Granted, there are plenty of variables that make this unscientific.

Individual respondent's perceptions will vary. The questions might

be too subjective. The ability to measure progress of the disease,

by time elapsed, may prove too inaccurate because length of symptoms

prior to diagnosis, misdiagnosis, delay of patient or their family

to seek diagnosis, and much more might cause too much inconsistency.

What Could It Be?

Where this project goes is unknown. Perhaps it stays at the amateur

level. But perhaps with some exposure to the scientific community,

it might grow in scope and measurability. Could this list be a

starting point for researchers? Could it be used to create a

baseline of stages, and then be refined by someone who can follow

patients through the entire course of the disease? Can the data be

gathered by amateurs, but then analyzed by professionals?

What's Next?

The next step is to get these questions into more knowledgeable

hands. With input from researchers and medical experts, perhaps

this project can generate data that is helpful not just to patients,

families and caregivers, but doctors, researchers and educators as

well.

I look forward to hearing from you.

(signed my name, and address, with the following below:)

Bruce's story:

My father had been losing cognitive ability mildly for 5 years, and

was diagnosed with Mild Cognitive Impairment and REM Sleep Behavior

Disorder in 2002. I researched both diagnoses, learned more about

AD and was introduced for the first time to LBD. For two years I

watched his symptoms closely. Two back surgeries in 2003 seem to

have increased the progression of the dementia. In March, 2004,

after neuro-psych testing, his diagnosis was changed to LBD.

This project is for you, Pop.

Welcome to LBDcaregivers.

[Guest guest]

To and Peggy

If any of us can supply any info on what is going on with LO or what went on

just let us know. If we can be of any other help I have time to give some.

Simmel

Exciting news on the LBD Stages Project!

A good friend to everyone here, Peggy, also on the board of the LBD

Association, sent an e-mail introducing my project to two experts in

the field of LBD. One is a professor of Neurology at Drexel

University, Carol Lippa, and the other is the reknown Prof. Ian

Mc, possibly the foremost expert on LBD. (Also on the list is

our very own Russ , but I haven't heard any response from him

in a while. He's a busy guy!)

They have expressed an interest in the project, and have offered to

meet with us in Philadelphia this summer, while they are attending

the World Conference on Alzheimer's!!!!

Today I sent an introductory e-mail, along with a summary of the

project (read it below!), plus the list of questions as it now

stands (115 questions). I am hoping to hear their initial reaction

to our project, and make modifications before we meet in July.

I can't tell you how exciting it is to know that we will be

receiving input from some highly respected experts in LBD! Who

knows where it will go - possibly straight into the toilet - but

possibly someplace none of us ever imagined!

Just had to share...

Love to you all,

Here's the introduction summary...

LBD Stages Project

Why?

This project began out of the frustration of caregivers, whose loved

ones have Lewy Body Dementia (LBD). There is little information

available to help us prepare for the difficult tightrope that we

will walk. Yes, there are lists of symptoms, and the ultimate

prognosis, but nothing to help us chart our way through difficult

times. LBD varies significantly enough from Alzheimer's (AD), that

the stages that exist for AD are of little help to the caregiver or

other family members who need to understand the progression of the

disease.

We are not alone in needing more information. Many of us have had

to educate family practice physicians, nurses, and both hospital and

assisted living/nursing home staff about LBD.

What?

The original purpose of the project was to create a `layman's guide'

which would identify trends in the progression of LBD, define at

least 3 stages of the disease, and provide caregivers and families a

roadmap by which they might anticipate problems and reduce crises,

and educate them so they can provide useful information to the

doctors involved. This is not a scientific study, but rather a home-

grown attempt at something the medical community has yet to provide.

Who?

The Yahoo Health online bulletin board for LBD caregivers and

spouses is a network of experienced and novice caregivers who have a

family member who suffers from LBD. It is a tremendous source of

support, information, and experience. The LBD Association is also

participating in the ongoing development of the project.

How?

A fledgling series of questions was presented for additional input

to a limited number of caregivers. As more common symptoms were

identified, the list grew. Ultimately, it totaled over 80

questions. This list was submitted to the entire Caregiver's Board,

in addition to the " Spouses Only " Board. Over 40 responses were

received, entered into a database and reviewed for initial trends.

As the questions were to be answered " Yes/No " , it did not allow for

the respondents to indicate severity or changes in frequency. The

list is being revised now, and a draft version is attached. (It is

a working copy only, not to be considered complete or final.)

Why Not?

Granted, there are plenty of variables that make this unscientific.

Individual respondent's perceptions will vary. The questions might

be too subjective. The ability to measure progress of the disease,

by time elapsed, may prove too inaccurate because length of symptoms

prior to diagnosis, misdiagnosis, delay of patient or their family

to seek diagnosis, and much more might cause too much inconsistency.

What Could It Be?

Where this project goes is unknown. Perhaps it stays at the amateur

level. But perhaps with some exposure to the scientific community,

it might grow in scope and measurability. Could this list be a

starting point for researchers? Could it be used to create a

baseline of stages, and then be refined by someone who can follow

patients through the entire course of the disease? Can the data be

gathered by amateurs, but then analyzed by professionals?

What's Next?

The next step is to get these questions into more knowledgeable

hands. With input from researchers and medical experts, perhaps

this project can generate data that is helpful not just to patients,

families and caregivers, but doctors, researchers and educators as

well.

I look forward to hearing from you.

(signed my name, and address, with the following below:)

Bruce's story:

My father had been losing cognitive ability mildly for 5 years, and

was diagnosed with Mild Cognitive Impairment and REM Sleep Behavior

Disorder in 2002. I researched both diagnoses, learned more about

AD and was introduced for the first time to LBD. For two years I

watched his symptoms closely. Two back surgeries in 2003 seem to

have increased the progression of the dementia. In March, 2004,

after neuro-psych testing, his diagnosis was changed to LBD.

This project is for you, Pop.

Welcome to LBDcaregivers.