Re: New to boards

[Guest guest]

Welcome to the board Alan! We'd never ask you to leave this board.

And you're not the only one here who is afflicted with dementia - at

least one other is Chip Gerber. He has enlightened us with his side

of this terrible disease and we all like to know what is going on

with our LOs and having your perspective is helpful. I'm very sorry

that you are having to deal with this disease first hand - but by the

look of your email " balivehappy " it seems that you are making sure

your life is has happy as possible and I applaud you for that. We

look forward to your contributions to this board and I hope we can be

of service to you too!

A couple of questions: What are your daily routines as of right now?

What have you found that is helping your situation?

; loving daughter of Maureen of Boston, MA; finally diagnosed

with LBD on 2/06 after also being diagnosed with everything from AD

to Vascular Dementia caused by mini strokes to Binswengers...; was

victim to rapid decline from Risperidone (or combination of

Risperidone with other drugs OR possibly received another " bad drug "

when she was observed/tested in a hospital in 10/05); in a NH since

11/05.

>

> Hi everyone!! I am just joining your boards. I must admit i feel

illegitimate as I am not a caregiver but a patient. I was diagnosed

with LBD about a month ago. I am on Aricept and Resperidal. I want to

learn more about my disease and who better to ask than caregivers. I

truly respect and admire the sacrafice you make for your loved ones.

I do not want to be a burden to mine but know in time I will be. That

is the most disheatrtening thing about this disease. I hope you will

not ask me to leave the boards because I am not a caregiver. I will

help where I can and do my best to be a contributing member.

> I am 53 years old. I have a wife and 6 grown children we are

empty nesters. I used to run multi-million dollar corporations but

can no longer do so. I hold an MBA and did consulting work but can no

longer do so. I am on SSDI, as my doctor wrote a letter I am

permanently unemployable. We live in Idaho in the States.

> Thats my quick bio of introduction. I look forward to hearing

from you and learning from you.

> Thank you Dirk

>

>

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

> New Yahoo! Messenger with Voice. Call regular phones from your PC

for low, low rates.

>

>

[Guest guest]

Welcome to the group Dirk!

We have a few members here who have been dx'd with LBD.

I look foward to hearing from you as we can help each other to learn

more about this disease and how to cope.

My mother was dx'd at 63 and she progressed very quickly to her present

bid-ridden state. This is not the case for everyone.

Nice to have you on-board.

Courage

[Guest guest]

Dirk,

You are most welcome to share here with us. Thank you for being willing to do

so. We can

learn so much from you as you can from everyone here. I am very sorry to hear

of your

diagnosis, especially at such a young age. Thankfully the children have moved

on and

your wife should have more stamina with her youth to help you through this

difficult time.

An initial recommendation, make sure she has power of attorney over your

financial and

personal matters, wills and all necessary legalities are put into place early on

in this

journey. That will ease the mind for you both, will make dealing with all so

much easier

for her.

, Oakville Ont.

Mom 92, 12 1/2 years " Parkinsons "

3 years ago LBD diagnosis, evident much longer in hindsight. Encouraged to give

up her

licence 6 years ago.

Currently immobile, in tilt wheelchair, spoonfed pureed food. Spends most of

days behind

closed eyes.

Eltroxin, Tylenol twice a day.

>

> Hi everyone!! I am just joining your boards. I must admit i feel illegitimate

as I am not a

caregiver but a patient. I was diagnosed with LBD about a month ago. I am on

Aricept and

Resperidal. I want to learn more about my disease and who better to ask than

caregivers. I

truly respect and admire the sacrafice you make for your loved ones. I do not

want to be a

burden to mine but know in time I will be. That is the most disheatrtening thing

about this

disease. I hope you will not ask me to leave the boards because I am not a

caregiver. I will

help where I can and do my best to be a contributing member.

> I am 53 years old. I have a wife and 6 grown children we are empty nesters.

I used to

run multi-million dollar corporations but can no longer do so. I hold an MBA and

did

consulting work but can no longer do so. I am on SSDI, as my doctor wrote a

letter I am

permanently unemployable. We live in Idaho in the States.

> Thats my quick bio of introduction. I look forward to hearing from you and

learning

from you.

> Thank you Dirk

>

>

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

> New Yahoo! Messenger with Voice. Call regular phones from your PC for low, low

rates.

>

>

[Guest guest]

Hi Dirk-

Welcome to our LBD support group. Please don't feel uneasy about being a person

with LBD rather than a caregiver. We have a few others that are members and

their insight is so valuable to us.

My Mother (age 87) and I were the caregivers for my Dad (age 88) who died

9/11/05 after a 4 year battle with LBD. When Dad was dx'd, he was pretty far

into his disease. We were very fortunate because my Dad's easy going

personality never changed. It was a hard task, but he was a pleasure. I have

stayed online with this great group so that I can help others and, at times, I

still lean on them for emotional support. You can do the same. You can give us

your insight and advice and we intern are always there for you.

Welcome again!

Gerry Deverell

Wilmington, De.

New to boards

Hi everyone!! I am just joining your boards. I must admit i feel illegitimate

as I am not a caregiver but a patient. I was diagnosed with LBD about a month

ago. I am on Aricept and Resperidal. I want to learn more about my disease and

who better to ask than caregivers. I truly respect and admire the sacrafice you

make for your loved ones. I do not want to be a burden to mine but know in time

I will be. That is the most disheatrtening thing about this disease. I hope you

will not ask me to leave the boards because I am not a caregiver. I will help

where I can and do my best to be a contributing member.

I am 53 years old. I have a wife and 6 grown children we are empty nesters.

I used to run multi-million dollar corporations but can no longer do so. I hold

an MBA and did consulting work but can no longer do so. I am on SSDI, as my

doctor wrote a letter I am permanently unemployable. We live in Idaho in the

States.

Thats my quick bio of introduction. I look forward to hearing from you and

learning from you.

Thank you Dirk

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

New Yahoo! Messenger with Voice. Call regular phones from your PC for low, low

rates.

[Guest guest]

Welcome Dirk, and thank you for writing. We are most happy to see anyone

reaching out for information, and sharing theirs. We all learn from each other.

No one will ever ask you to leave, but will rejoice with you in whatever you

can achieve.

My husband has a very difficult time with the computer, and is getting worse

about finding the right TV buttons. He does read, used to read avidly, but,

now, mostly watches TV. Not good.

Glad you are here. But sorry you have to be, just as we are sorry anyone has

to be here. Just stay happy.

Imogene

Caregiver for my True Texas Gentleman husband of 35 years. He has AD and

possibly LBD, is Taking Aricept and Risperdal. Age 72 in May.

In a message dated 4/1/2006 9:26:44 AM Central Standard Time,

balivehappy@... writes:

Hi everyone!! I am just joining your boards. I must admit i feel

illegitimate as I am not a caregiver but a patient. I was diagnosed with LBD

about a

month ago. I am on Aricept and Resperidal. I want to learn more about my

disease

and who better to ask than caregivers. I truly respect and admire the

sacrafice you make for your loved ones. I do not want to be a burden to mine

but

know in time I will be. That is the most disheatrtening thing about this

disease. I hope you will not ask me to leave the boards because I am not a

caregiver. I will help where I can and do my best to be a contributing member.

I am 53 years old. I have a wife and 6 grown children we are empty nesters.

I used to run multi-million dollar corporations but can no longer do so. I

hold an MBA and did consulting work but can no longer do so. I am on SSDI, as

my doctor wrote a letter I am permanently unemployable. We live in Idaho in

the States.

Thats my quick bio of introduction. I look forward to hearing from you and

learning from you.

Thank you Dirk

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

[Guest guest]

In answer to your questions. My daily routines are to do all of the

housekeeping, yardwork, shopping and cooking. That way I can feel useful and my

wife doesn't have to do anything domestic when she gets home from work. As far

as coping strategies I have a business card I made on my computer. I put one

next to the phone and carry one with me. This way when people ask for my phone

number, address, e-mail address or fax number i don't have to tell them I don't

know. Also when i get lost at the store i carry my cell phone so I can call my

wife to walk me through the steps of getting home. If I am lost as I was the

other day and can't get ahold of wife. I think about routes which may not be the

shortest but are well stored in my long term memory which is more accessible. I

used to just panic. With these steps in place I don't have to. I should not be

driving. However we live in the country and it is a necessity. Hope this answers

your questions. If you have anymore do not

hesitate to ask.

octoryrose wrote: Welcome to the board Alan! We'd never

ask you to leave this board.

And you're not the only one here who is afflicted with dementia - at

least one other is Chip Gerber. He has enlightened us with his side

of this terrible disease and we all like to know what is going on

with our LOs and having your perspective is helpful. I'm very sorry

that you are having to deal with this disease first hand - but by the

look of your email " balivehappy " it seems that you are making sure

your life is has happy as possible and I applaud you for that. We

look forward to your contributions to this board and I hope we can be

of service to you too!

A couple of questions: What are your daily routines as of right now?

What have you found that is helping your situation?

; loving daughter of Maureen of Boston, MA; finally diagnosed

with LBD on 2/06 after also being diagnosed with everything from AD

to Vascular Dementia caused by mini strokes to Binswengers...; was

victim to rapid decline from Risperidone (or combination of

Risperidone with other drugs OR possibly received another " bad drug "

when she was observed/tested in a hospital in 10/05); in a NH since

11/05.

>

> Hi everyone!! I am just joining your boards. I must admit i feel

illegitimate as I am not a caregiver but a patient. I was diagnosed

with LBD about a month ago. I am on Aricept and Resperidal. I want to

learn more about my disease and who better to ask than caregivers. I

truly respect and admire the sacrafice you make for your loved ones.

I do not want to be a burden to mine but know in time I will be. That

is the most disheatrtening thing about this disease. I hope you will

not ask me to leave the boards because I am not a caregiver. I will

help where I can and do my best to be a contributing member.

> I am 53 years old. I have a wife and 6 grown children we are

empty nesters. I used to run multi-million dollar corporations but

can no longer do so. I hold an MBA and did consulting work but can no

longer do so. I am on SSDI, as my doctor wrote a letter I am

permanently unemployable. We live in Idaho in the States.

> Thats my quick bio of introduction. I look forward to hearing

from you and learning from you.

> Thank you Dirk

>

>

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

> New Yahoo! Messenger with Voice. Call regular phones from your PC

for low, low rates.

>

>

[Guest guest]

Dirk,

Welcome aboard. Sorry you need to be here and sorry you have such an " early "

diagnosis. If you click on the LBD address after my name, you will find a

wealth of information. The latest newsletter can be found there too.

You may want to check the messages from last week. There was lots of

conversation about the resperidal medication. If you go to the bottom of any

message, or the bottom of the digest, you will find a " visit your group " that

you can click on and it will take you to the group site. You can find any of the

previous messages there. You will need to " sign in " and then you can read to

your hearts content. That is where the photos are too.

Donna R

Do you want to read more about Lewy Body? You can also read the Thistle, the

LBD Newsletter. Just click on:

http://www.lewybodydementia.org

New to boards

[Guest guest]

Good Morning Dirk,

I have been catching up on my messages, I had 549 of them yesterday!

Ahhhh!!!!

I admire you so much for sharing your experience with us. As I have read

through the messages you have written so far my heart wells up with emotion.

You are so brave and I am glad that you are here with us. Lewyville has been a

refuge for me in some very troubling times and these wonderful people have been

there each time I have needed them. So I hope that we too,can be there for you

and your wife when you need us most.

My FIL (father in law) was diagnosed in Jan 06. We saw signs of LBD 2 year

prior. I was given the honor to care for him for a week while my MIL (mother in

law) had surgery. He is a sweet man, with a great sense of humor at times. One

day as we were sitting doing a crossword puzzle, (I cheated alot cause neither

of us knew the answers), he started to rub his forehead, a sure sign that he's

troubled by something, and said he just couldn't understand this medical mess he

was in. He knows deep down that something is wrong and that his brain isn't

working right, but he can never hold on to the knowlegde that it's called Lewy

Body Disease. I see the battle within him thinking he can do stuff like

before,but then it hits him as he's trying that he really can't and he gets mad.

My MIL doesn't always help, she yells at him a lot.

I'm not sure why I shared that with you. I guess I just want you to know that

having you here will help me see things from my FIL's prospective. I didn't

realize that we had 2 others that were diagnosed as well.

I am sorry that you have to travel this wretched road, but I am glad that you

are here to share your experience with us. Again I admire you and your wife for

becoming a part of this group. It is my prayer that we can serve you in some

way as you share your experience with us.

May God richly bless you.

Tori

DIL (daugher in law) to Dizz, dx 1/06, hospitalized 2/06 w/ kidney failure, nh

(nursing home) till 3/06 for rehab. recently fell at home : 0 !!!!!!!

Alan scott wrote:

In answer to your questions. My daily routines are to do all of the

housekeeping, yardwork, shopping and cooking. That way I can feel useful and my

wife doesn't have to do anything domestic when she gets home from work. As far

as coping strategies I have a business card I made on my computer. I put one

next to the phone and carry one with me. This way when people ask for my phone

number, address, e-mail address or fax number i don't have to tell them I don't

know. Also when i get lost at the store i carry my cell phone so I can call my

wife to walk me through the steps of getting home. If I am lost as I was the

other day and can't get ahold of wife. I think about routes which may not be the

shortest but are well stored in my long term memory which is more accessible. I

used to just panic. With these steps in place I don't have to. I should not be

driving. However we live in the country and it is a necessity. Hope this answers

your questions. If you have anymore do not

hesitate to ask.

octoryrose wrote: Welcome to the board Alan! We'd never

ask you to leave this board.

And you're not the only one here who is afflicted with dementia - at

least one other is Chip Gerber. He has enlightened us with his side

of this terrible disease and we all like to know what is going on

with our LOs and having your perspective is helpful. I'm very sorry

that you are having to deal with this disease first hand - but by the

look of your email " balivehappy " it seems that you are making sure

your life is has happy as possible and I applaud you for that. We

look forward to your contributions to this board and I hope we can be

of service to you too!

A couple of questions: What are your daily routines as of right now?

What have you found that is helping your situation?

; loving daughter of Maureen of Boston, MA; finally diagnosed

with LBD on 2/06 after also being diagnosed with everything from AD

to Vascular Dementia caused by mini strokes to Binswengers...; was

victim to rapid decline from Risperidone (or combination of

Risperidone with other drugs OR possibly received another " bad drug "

when she was observed/tested in a hospital in 10/05); in a NH since

11/05.

>

> Hi everyone!! I am just joining your boards. I must admit i feel

illegitimate as I am not a caregiver but a patient. I was diagnosed

with LBD about a month ago. I am on Aricept and Resperidal. I want to

learn more about my disease and who better to ask than caregivers. I

truly respect and admire the sacrafice you make for your loved ones.

I do not want to be a burden to mine but know in time I will be. That

is the most disheatrtening thing about this disease. I hope you will

not ask me to leave the boards because I am not a caregiver. I will

help where I can and do my best to be a contributing member.

> I am 53 years old. I have a wife and 6 grown children we are

empty nesters. I used to run multi-million dollar corporations but

can no longer do so. I hold an MBA and did consulting work but can no

longer do so. I am on SSDI, as my doctor wrote a letter I am

permanently unemployable. We live in Idaho in the States.

> Thats my quick bio of introduction. I look forward to hearing

from you and learning from you.

> Thank you Dirk

>

>

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

> New Yahoo! Messenger with Voice. Call regular phones from your PC

for low, low rates.

>

>

[Guest guest]

Hi Alan

I was so sad to hear about your LBD and how truly

young you are? That was a shock to me. This disease

does not discriminate that is for sure.

We welcome you aboard!!! And do not feel illegitimate

at all we have at least one other member who is

affected by LBD. We love hearing from the other side

so to speak. It helps us deal with our loved ones and

understand just what they are going through.

Thanks for your courage.

Dena So.CA

Mother (83) at the end phases of LBD was taking

Aricept

Risperadal, Prozac, Lisinipril, Namemda, Clonzapam,

Recently admitted to Nursing Home. Lived with me 10

months(I wish it was longer)

--- Alan scott wrote:

> Hi everyone!! I am just joining your boards. I must

> admit i feel illegitimate as I am not a caregiver

> but a patient. I was diagnosed with LBD about a

> month ago. I am on Aricept and Resperidal. I want to

> learn more about my disease and who better to ask

> than caregivers. I truly respect and admire the

> sacrafice you make for your loved ones. I do not

> want to be a burden to mine but know in time I will

> be. That is the most disheatrtening thing about this

> disease. I hope you will not ask me to leave the

> boards because I am not a caregiver. I will help

> where I can and do my best to be a contributing

> member.

> I am 53 years old. I have a wife and 6 grown

> children we are empty nesters. I used to run

> multi-million dollar corporations but can no longer

> do so. I hold an MBA and did consulting work but can

> no longer do so. I am on SSDI, as my doctor wrote a

> letter I am permanently unemployable. We live in

> Idaho in the States.

> Thats my quick bio of introduction. I look forward

> to hearing from you and learning from you.

> Thank you Dirk

>

>

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

> New Yahoo! Messenger with Voice. Call regular phones

> from your PC for low, low rates.

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

__________________________________________________

[Guest guest]

Hi Dirk

Sorry I called you Alan. What a ditz I can be some

times. Sorry!!

Dena

--- Dena LEAVITT wrote:

> Hi Alan

>

> I was so sad to hear about your LBD and how truly

> young you are? That was a shock to me. This disease

> does not discriminate that is for sure.

>

> We welcome you aboard!!! And do not feel

> illegitimate

> at all we have at least one other member who is

> affected by LBD. We love hearing from the other side

> so to speak. It helps us deal with our loved ones

> and

> understand just what they are going through.

>

> Thanks for your courage.

>

> Dena So.CA

> Mother (83) at the end phases of LBD was taking

> Aricept

> Risperadal, Prozac, Lisinipril, Namemda, Clonzapam,

> Recently admitted to Nursing Home. Lived with me 10

> months(I wish it was longer)

>

> --- Alan scott wrote:

>

> > Hi everyone!! I am just joining your boards. I

> must

> > admit i feel illegitimate as I am not a caregiver

> > but a patient. I was diagnosed with LBD about a

> > month ago. I am on Aricept and Resperidal. I want

> to

> > learn more about my disease and who better to ask

> > than caregivers. I truly respect and admire the

> > sacrafice you make for your loved ones. I do not

> > want to be a burden to mine but know in time I

> will

> > be. That is the most disheatrtening thing about

> this

> > disease. I hope you will not ask me to leave the

> > boards because I am not a caregiver. I will help

> > where I can and do my best to be a contributing

> > member.

> > I am 53 years old. I have a wife and 6 grown

> > children we are empty nesters. I used to run

> > multi-million dollar corporations but can no

> longer

> > do so. I hold an MBA and did consulting work but

> can

> > no longer do so. I am on SSDI, as my doctor wrote

> a

> > letter I am permanently unemployable. We live in

> > Idaho in the States.

> > Thats my quick bio of introduction. I look

> forward

> > to hearing from you and learning from you.

> > Thank you Dirk

> >

> >

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

> > New Yahoo! Messenger with Voice. Call regular

> phones

> > from your PC for low, low rates.

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

Welcome Dirk

I am just back from a w/e away and catching up. (I also read your e-mail about

your fall)

So sorry you have the need to be with us. It is nice for us however, to have

more first hand input. It is difficult as a caregiver to put ourselves in our

LO's shoes. I will reinterate what someone else responded to you. Please,

please give up driving. There is not a day that goes by when I don't thank God

my mother gave up driving voluntarily several years ago. I understand where you

are coming from about the lack of independance but it is not only yourself you

are putting at risk.

Take care of yourself.

from Cresswell ON Canada

Long distance CG to Margaret (Mum) aged 76

Lives at The Briton House, Memory Floor, Toronto

DX Early Onset AD & PD approx. 2002

DX LBD 01/2005

Current Meds: Seroquel, Aricept, LD ASA, Levothyroxin, Calcium Suppl.

Was on: Sinemet, Excelon

Was given Risperdal in NH for a few weeks (Feb '05)

Haldol several times in Hospital Jan 05

Alan scott wrote: Hi everyone!! I am just joining

your boards. I must admit i feel illegitimate as I am not a caregiver but a

patient. I was diagnosed with LBD about a month ago. I am on Aricept and

Resperidal. I want to learn more about my disease and who better to ask than

caregivers. I truly respect and admire the sacrafice you make for your loved

ones. I do not want to be a burden to mine but know in time I will be. That is

the most disheatrtening thing about this disease. I hope you will not ask me to

leave the boards because I am not a caregiver. I will help where I can and do my

best to be a contributing member.

I am 53 years old. I have a wife and 6 grown children we are empty nesters. I

used to run multi-million dollar corporations but can no longer do so. I hold an

MBA and did consulting work but can no longer do so. I am on SSDI, as my doctor

wrote a letter I am permanently unemployable. We live in Idaho in the States.

Thats my quick bio of introduction. I look forward to hearing from you and

learning from you.

Thank you Dirk

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

New Yahoo! Messenger with Voice. Call regular phones from your PC for low, low

rates.

[Guest guest]

Dirk - thanks for sharing your routine. The business card is a smart

move - I used to make them for my mother too - they were very useful

to her.

; loving daughter of Maureen of Boston, MA; finally diagnosed

with LBD on 2/06 after also being diagnosed with everything from AD

to Vascular Dementia caused by mini strokes to Binswengers...; was

victim to rapid decline from Risperidone (or combination of

Risperidone with other drugs OR possibly received another " bad drug "

when she was observed/tested in a hospital in 10/05); in a NH since

11/05. Update: on antidepressant Celexa, 20mg (still teary, but not

as weepy)

> >

> > Hi everyone!! I am just joining your boards. I must admit i feel

> illegitimate as I am not a caregiver but a patient. I was diagnosed

> with LBD about a month ago. I am on Aricept and Resperidal. I want

to

> learn more about my disease and who better to ask than caregivers.

I

> truly respect and admire the sacrafice you make for your loved

ones.

> I do not want to be a burden to mine but know in time I will be.

That

> is the most disheatrtening thing about this disease. I hope you

will

> not ask me to leave the boards because I am not a caregiver. I will

> help where I can and do my best to be a contributing member.

> > I am 53 years old. I have a wife and 6 grown children we are

> empty nesters. I used to run multi-million dollar corporations but

> can no longer do so. I hold an MBA and did consulting work but can

no

> longer do so. I am on SSDI, as my doctor wrote a letter I am

> permanently unemployable. We live in Idaho in the States.

> > Thats my quick bio of introduction. I look forward to hearing

> from you and learning from you.

> > Thank you Dirk

> >

> >

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

> > New Yahoo! Messenger with Voice. Call regular phones from your PC

> for low, low rates.

> >

> >