Re: Digest Number 4880

[Guest guest]

Dear Friends:

Good morning! It's about 11:oo, A. M. , a good time for me before sunsetting

takes over, it seems.

Sneezing a bit this morning, as my dear caregiver, Sharon blesses me in the

background. And a God bless you to each of you and yours. I know personally

it's not easy. It's going on maybe 11 years now for Sharon and me, oh and the

couple years before it was even diagnosed. At first, it was early stages of

Alzheimer's Disease and later, much later, it was diagnosed as Lewy Body Disease

with Parkinson's like effects.

Although I don't write often, I do read much of what is on LBD Association. I

have mixed blessings presently...for the fleeting moment. Goes up and down.

One would think I was a yo-yo. Feels like that with my emotions at times.

I search the computer when I'm up to it for information on how I can survive

just a little longer with LBD. With the little on line, most of it is for and

by caregivers of LBD. I often in disgust ask why not a few notes from those

like me. Lost in the fog, but for a few moments when we come out for a grasp of

breath. Where is the every day survival guide for those of us with the

disease? Things that might be plain basic and should be known by all to some,

may not

even be thought of our thought of and forgotten by others.

Where do I go from here? What do I do now? I wanted to say that I've enjoyed

moments by Ginnie Burkholder. Reflections on her LBJ husband and her

own struggles. So many times it is just the stuggles of the caregiver which

must be dealt with also. Perhaps two things can be done with the same amout of

enertgy.There is so little in print on the horrors of LBJ. So little infomation

available. I just might have a little time left on planet Earth and Sharon, I

hope after I go, that she can have some good years left but we need a

community to surround us with the how to's, what has failed, what has helped

them and

with daily prayers and friendship.

Please...and thank you.

Chip Gerber, Florida

</HTML>

[Guest guest]

Dear Chip,

It's always wonderful to see an email from you. I'm sending you lots of

love, hugs and peace.

xx, Norma

cglaughter1@wmcon

nect.com

Sent by: To

LBDcaregivers@yah LBDcaregivers

oogroups.com cc

Subject

01/16/2008 11:25 Re: Digest Number

AM 4880

Please respond to

LBDcaregivers@yah

oogroups.com

Dear Friends:

Good morning! It's about 11:oo, A. M. , a good time for me before

sunsetting

takes over, it seems.

Sneezing a bit this morning, as my dear caregiver, Sharon blesses me in the

background. And a God bless you to each of you and yours. I know personally

it's not easy. It's going on maybe 11 years now for Sharon and me, oh and

the

couple years before it was even diagnosed. At first, it was early stages of

Alzheimer's Disease and later, much later, it was diagnosed as Lewy Body

Disease

with Parkinson's like effects.

Although I don't write often, I do read much of what is on LBD Association.

I

have mixed blessings presently...for the fleeting moment. Goes up and down.

One would think I was a yo-yo. Feels like that with my emotions at times.

I search the computer when I'm up to it for information on how I can

survive

just a little longer with LBD. With the little on line, most of it is for

and

by caregivers of LBD. I often in disgust ask why not a few notes from those

like me. Lost in the fog, but for a few moments when we come out for a

grasp of

breath. Where is the every day survival guide for those of us with the

disease? Things that might be plain basic and should be known by all to

some, may not

even be thought of our thought of and forgotten by others.

Where do I go from here? What do I do now? I wanted to say that I've

enjoyed

moments by Ginnie Burkholder. Reflections on her LBJ husband and

her

own struggles. So many times it is just the stuggles of the caregiver which

must be dealt with also. Perhaps two things can be done with the same amout

of

enertgy.There is so little in print on the horrors of LBJ. So little

infomation

available. I just might have a little time left on planet Earth and Sharon,

I

hope after I go, that she can have some good years left but we need a

community to surround us with the how to's, what has failed, what has

helped them and

with daily prayers and friendship.

Please...and thank you.

Chip Gerber, Florida

</HTML>

[Guest guest]

Chip,

I get what you are looking for, and you're right, I don't think there is

anything out there that delineates all the facets.

I know our LO really doesn't want to know anything about her disease. Most of

our LO's are past being able to understand what is going to happen.

I, too, would like to read a good, non-clinical description.

I am anxious to hear what people might suggest.

I know people will say every case if different, but we all would like better

road maps for what we are facing.

It is sheer frustration that makes us so crazy.

We know we aren't headed anyplace good, and we know it is a rough ride for

all who are involved.

There isn't a one of us caregivers who wouldn't give away all we own to spare

our LO from this disease. If my dying today would make anyone's LBD go away,

I'd be willing to give my life.

We are all scared shitless, and when the poop rules, we don't know what to do.

We are trying to do our best for our person, and yet we don't have the manual,

either.

This seems like a pilgrimage of virgin travelers. It's anyone's guess if we

are doing right, we are all just trying to do our best, and trying to keep the

courage to keep going.

We try to share our victories, and defeats, in hopes someone else can use the

information.

We all throw the laundry in the same machines, and wait to see what will fit

after the spin cycle.

It's so wonderful that people who have already lost loved ones stay with the

site.

We're looking for the answers, and even the right questions.

You have submitted a great question! let's see what comes up!

Carol

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

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

I just read the piece written by the ALZ patient asking for patience

from caregivers. I think it might have more overtones of ALZ than

LBD.

What would you add or subtract from your side?

Where are we making mistakes that you could help us avoid in dealing

with the patient?

I copied the piece and marked some things and thought I would share

it with my patient when she is having a really " on " day.

If you start something here, and we can add to it, or understand it

better, you would be making a huge contribution.

Everything LBD seems to be new frontier.

We probably sound pretty whiny and selfish on a good vent day, and it

is only our frustration.

Can you give us some insight?

I am in Fort Myers. What general region of the state are you in?

My husband has some Parkinson's symptoms, but the doctor says it is

not, but his mom having LBD, makes him nervous.

I'll look forward to posts, and wish you good days that you can give

us the inside story.

Carol

>

> Dear Friends:

> Good morning! It's about 11:oo, A. M. , a good time for me before

sunsetting

> takes over, it seems.

> Sneezing a bit this morning, as my dear caregiver, Sharon blesses

me in the

> background. And a God bless you to each of you and yours. I know

personally

> it's not easy. It's going on maybe 11 years now for Sharon and me,

oh and the

> couple years before it was even diagnosed. At first, it was early

stages of

> Alzheimer's Disease and later, much later, it was diagnosed as Lewy

Body Disease

> with Parkinson's like effects.

> Although I don't write often, I do read much of what is on LBD

Association. I

> have mixed blessings presently...for the fleeting moment. Goes up

and down.

> One would think I was a yo-yo. Feels like that with my emotions at

times.

> I search the computer when I'm up to it for information on how I

can survive

> just a little longer with LBD. With the little on line, most of it

is for and

> by caregivers of LBD. I often in disgust ask why not a few notes

from those

> like me. Lost in the fog, but for a few moments when we come out

for a grasp of

> breath. Where is the every day survival guide for those of us with

the

> disease? Things that might be plain basic and should be known by

all to some, may not

> even be thought of our thought of and forgotten by others.

> Where do I go from here? What do I do now? I wanted to say that

I've enjoyed

> moments by Ginnie Burkholder. Reflections on her LBJ husband

and her

> own struggles. So many times it is just the stuggles of the

caregiver which

> must be dealt with also. Perhaps two things can be done with the

same amout of

> enertgy.There is so little in print on the horrors of LBJ. So

little infomation

> available. I just might have a little time left on planet Earth and

Sharon, I

> hope after I go, that she can have some good years left but we need

a

> community to surround us with the how to's, what has failed, what

has helped them and

> with daily prayers and friendship.

> Please...and thank you.

> Chip Gerber, Florida

> </HTML>

>

>

>

[Guest guest]

Chip,

You bring up some excellent points and hopefully someone on the LBDA website

will read this and perhaps talk to you more in depth about this.

Sending you and Sharon much strength.

Courage

Re: Digest Number 4880

Dear Friends:

Good morning! It's about 11:oo, A. M. , a good time for me before sunsetting

takes over, it seems.

Sneezing a bit this morning, as my dear caregiver, Sharon blesses me in the

background. And a God bless you to each of you and yours. I know personally

it's not easy. It's going on maybe 11 years now for Sharon and me, oh and the

couple years before it was even diagnosed. At first, it was early stages of

Alzheimer's Disease and later, much later, it was diagnosed as Lewy Body

Disease

with Parkinson's like effects.

Although I don't write often, I do read much of what is on LBD Association. I

have mixed blessings presently...for the fleeting moment. Goes up and down.

One would think I was a yo-yo. Feels like that with my emotions at times.

I search the computer when I'm up to it for information on how I can survive

just a little longer with LBD. With the little on line, most of it is for and

by caregivers of LBD. I often in disgust ask why not a few notes from those

like me. Lost in the fog, but for a few moments when we come out for a grasp

of

breath. Where is the every day survival guide for those of us with the

disease? Things that might be plain basic and should be known by all to some,

may not

even be thought of our thought of and forgotten by others.

Where do I go from here? What do I do now? I wanted to say that I've enjoyed

moments by Ginnie Burkholder. Reflections on her LBJ husband and her

own struggles. So many times it is just the stuggles of the caregiver which

must be dealt with also. Perhaps two things can be done with the same amout of

enertgy.There is so little in print on the horrors of LBJ. So little

infomation

available. I just might have a little time left on planet Earth and Sharon, I

hope after I go, that she can have some good years left but we need a

community to surround us with the how to's, what has failed, what has helped

them and

with daily prayers and friendship.

Please...and thank you.

Chip Gerber, Florida

</HTML>