Looking for information

[Guest guest]

Hello,

I am new to this group and am hoping to become more educated about LBD. I

guess I should start with some basics first. My name is Swanson. I have

been caring for my mother full time since 2/03, because of other diagnosed

medical problems. She currently has not been diagnosed with LBD, but from

everything I have read about it, this seems to be what I will have her check for

next. I'm not trying to self diagnose her but with her many other health

problems, it is difficult to just get her to a Dr. and for yet another problem

is not going to make it easier to get her to go. So, here are my questions

really, at least the first that come to mind in trying to figure out if this is

the right path to pursue or if time would be better spent in another way.

For those who are caring for someone in the more advanced

stages, is it really necessary to have a diagnosis? I mean, is putting a name

to the symptoms really important? What

Most stories I have read about learned that their loved one had

LBD once they were in a more advanced stage. So, to those of you who can look

back on your situation, what were the early warning signs (even if they were

overlooked at the time) and how long did they go on before it was realized that

there was a more serious problem going on?

What ongoing symptoms do you see in your loved one? I ask this

because with my mother, it's becoming harder and harder to tell what state of

mind she is in at any given time. She has Parkinson's like symptoms, although

her Dr. said he seriously doesn't think it is Parkinsons. This past weekend,

she was in a total different world. She was talking to people that wasn't

there, trying to do things that she couldn't physically do (she is in a wheel

chair all of the time) like get out of bed. So she fell onto the floor. Later

she didn't even know that she had done that. My brother lives in New York, but

according to her, he frequently visits her. I could just go on and on and on

with the adventures we have had lately. None of which are real. But she can't

tell the difference. Anyway, my husband noticed right away, that she had no

tremors while she was in this state. IT lasted from Friday night until mid-day

Sunday. Then she crashed, I mean finally slept hard. I had to rub her arm and

call her name loudly and such just to waken her for a meal or medicine. She is

in bed most of the time and seems to like it that way. But during this period

of hallucinations, she was more active, vocally more vibrant, and less sleepy.

Quite honesly, we seem to like her better this way because it is more like the

woman I have always known.

I'm sorry to jumble so many things together. Any information you care to share

with me would be very much appreciated. Whjether this turns out to actually be

LBD or something else, it's so nice to know that others in similar situations

are out there and so gracious to be there to support others.

Thanks you all so much for taking the time to listen.

Swanson

[Guest guest]

denise,

my name is sharon m and i am caregiver along iwth my husband donnie for my

70 year old father who was diagnosed with lbd this past may. he has probably

had lbd for almost 7years, which started with unexpliained falls, extreme

paranoid and fluctuating awareness becasme part of it. he is currently on the

3rd

level of exelon 4.5 mg twice a day. he has platuead meaning he isnt getting

worse and may een seem a little better. for how long of course we dont know.

you ask about having the diagnosis of lbd, wellk i believe it is important

beause lbd patients do not respond normally to meedicines and you would need to

be awared of whatever medicines cause her distress, like sinemet for restless

leg syndrome made dad a real bears, not even 1/4 of the dose could he take it

made him so ugly, yelling and screaming and very profane and vulgar, other

medicines make lbd patients react stragnely as welll so for that reason iti s

important to know the diagosis,. also it gave mty dad peace of mind actully

knowing e had a real disease and just wasnt imagaining soething. sigh,

i hope some of this helps, please feel free to ask questions, ake

statements, we are here to help you in any wya we can. take care and good luc,

sharon

m

a smile a day keeps the meanies away!!!

laughter is a breath of fresh air!

[Guest guest]

Hi,

I do wish that I had a diagnosis earlier so that I would not have been so angry

at my mother for some of the things she did. I thought she was having a nervous

breakdown and thought that she was doing things on purpose, just to get

attention. Boy was I wrong, but I spent so much time being angry at her rather

than angry at the disease that I missed out on what could have been some of her

last lucid days. I did eventually learn to " go with " the hallucinations and it

made both of us alot happier. Unfortunately alot of her disbeliefs were of the

paranoid nature and she was so suspicious and angry that we finally had to agree

to put her on medication to ease her mind. She is less " aware " now but a little

more calm. I believe that a diagnosis is necessary so that more doctors, nurses

and society in general become more aware of the disease. Until my mum's

diagnosis I had only heard of Alzheimers and now know that the $ for research is

being spent primarily on AD and not so much on

the other dementias.

Just my opinions!

Annette

" D. C. Swanson " wrote:

Hello,

I am new to this group and am hoping to become more educated about LBD. I guess

I should start with some basics first. My name is Swanson. I have been

caring for my mother full time since 2/03, because of other diagnosed medical

problems. She currently has not been diagnosed with LBD, but from everything I

have read about it, this seems to be what I will have her check for next. I'm

not trying to self diagnose her but with her many other health problems, it is

difficult to just get her to a Dr. and for yet another problem is not going to

make it easier to get her to go. So, here are my questions really, at least the

first that come to mind in trying to figure out if this is the right path to

pursue or if time would be better spent in another way.

For those who are caring for someone in the more advanced stages, is it really

necessary to have a diagnosis? I mean, is putting a name to the symptoms really

important? What

Most stories I have read about learned that their loved one had LBD once they

were in a more advanced stage. So, to those of you who can look back on your

situation, what were the early warning signs (even if they were overlooked at

the time) and how long did they go on before it was realized that there was a

more serious problem going on?

What ongoing symptoms do you see in your loved one? I ask this because with my

mother, it's becoming harder and harder to tell what state of mind she is in at

any given time. She has Parkinson's like symptoms, although her Dr. said he

seriously doesn't think it is Parkinsons. This past weekend, she was in a total

different world. She was talking to people that wasn't there, trying to do

things that she couldn't physically do (she is in a wheel chair all of the time)

like get out of bed. So she fell onto the floor. Later she didn't even know that

she had done that. My brother lives in New York, but according to her, he

frequently visits her. I could just go on and on and on with the adventures we

have had lately. None of which are real. But she can't tell the difference.

Anyway, my husband noticed right away, that she had no tremors while she was in

this state. IT lasted from Friday night until mid-day Sunday. Then she crashed,

I mean finally slept hard. I had to rub her arm and call

her name loudly and such just to waken her for a meal or medicine. She is in

bed most of the time and seems to like it that way. But during this period of

hallucinations, she was more active, vocally more vibrant, and less sleepy.

Quite honesly, we seem to like her better this way because it is more like the

woman I have always known.

I'm sorry to jumble so many things together. Any information you care to share

with me would be very much appreciated. Whjether this turns out to actually be

LBD or something else, it's so nice to know that others in similar situations

are out there and so gracious to be there to support others.

Thanks you all so much for taking the time to listen.

Swanson

[Guest guest]

Hello ,

Welcome to the group and nice to have you here. There is alot of

information here in the files that has helped me. I have LBD and I am

not in the late stages of the disease. Not exactly sure what stage I

am in, but I would say I have early dementia. To tell you what the

first symptom was I cannot do that as I myself am not sure where the

parkinsonism ends and the LBD begins. I can tell you that I have had

problems since my 30's. It was around ten years before I ever saw a

neurologist as I could always explain away the symptoms. It was upon

a surmounting amount of them that started affecting my ambulation and

staying erect that I finally went. As the matter of fact it was a

fall at work that first sent me to the neurologist. After going it

was another 7 years before the PD diagnosis and because the symptoms

were moving more rapidly than PD is why he gave me a parkisonism

diagnosis. I became delusional and hallucinatory in 2002 and declined

to the point I was hositalized in 2003 where I was kept for 5 weeks

before they found a good drug regimen that would bring me under

control. I now am on a plateau and I am trying to hang onto it as

long as I can. BTW I am just 55 now and have just recently learned

that it is Diffuse Lewy Body Disease. So here I am learning what I

can to hang on as long as I can and praying for a cure. I would be

pleased to answer what questions I can....Hugs....Patti

> Hello,

> I am new to this group and am hoping to become more educated about

LBD. I guess I should start with some basics first. My name is

Swanson. I have been caring for my mother full time since

2/03, because of other diagnosed medical problems. She currently has

not been diagnosed with LBD, but from everything I have read about

it, this seems to be what I will have her check for next. I'm not

trying to self diagnose her but with her many other health problems,

it is difficult to just get her to a Dr. and for yet another problem

is not going to make it easier to get her to go. So, here are my

questions really, at least the first that come to mind in trying to

figure out if this is the right path to pursue or if time would be

better spent in another way.

> For those who are caring for someone in the more

advanced stages, is it really necessary to have a diagnosis? I mean,

is putting a name to the symptoms really important? What

> Most stories I have read about learned that their

loved one had LBD once they were in a more advanced stage. So, to

those of you who can look back on your situation, what were the early

warning signs (even if they were overlooked at the time) and how long

did they go on before it was realized that there was a more serious

problem going on?

> What ongoing symptoms do you see in your loved

one? I ask this because with my mother, it's becoming harder and

harder to tell what state of mind she is in at any given time. She

has Parkinson's like symptoms, although her Dr. said he seriously

doesn't think it is Parkinsons. This past weekend, she was in a

total different world. She was talking to people that wasn't there,

trying to do things that she couldn't physically do (she is in a

wheel chair all of the time) like get out of bed. So she fell onto

the floor. Later she didn't even know that she had done that. My

brother lives in New York, but according to her, he frequently visits

her. I could just go on and on and on with the adventures we have

had lately. None of which are real. But she can't tell the

difference. Anyway, my husband noticed right away, that she had no

tremors while she was in this state. IT lasted from Friday night

until mid-day Sunday. Then she crashed, I mean finally slept hard.

I had to rub her arm and call her name loudly and such just to waken

her for a meal or medicine. She is in bed most of the time and seems

to like it that way. But during this period of hallucinations, she

was more active, vocally more vibrant, and less sleepy. Quite

honesly, we seem to like her better this way because it is more like

the woman I have always known.

>

> I'm sorry to jumble so many things together. Any information you

care to share with me would be very much appreciated. Whjether this

turns out to actually be LBD or something else, it's so nice to know

that others in similar situations are out there and so gracious to be

there to support others.

>

> Thanks you all so much for taking the time to listen.

>

> Swanson

>

>

[Guest guest]

I have to agree with the advise you have received here. My Mom has LBD and

she wasn't diagnosed until last year. She had the signs for at least 5 yrs

prior but no one found out what it was until then. She hallucinates and is

angry

quite a bit. There is an overview in the files that you might want to look

at. It gives some of the signs that indicate LBD. I handed that out to alot

of people who didn't know what it was. Including the medical people in the

Emergency Room I took her to recently. The doctors hadn't heard of it.

The right meds are important to her safety. My Mom was not doing well on

Seroquel but most people with LBD do. Right now she is on Exelon and Resperdal

(small dose) and seems to be doing better. You indicated she has other medical

problems, so does Mom. She has asbestosis around her lungs, a heart problem

and has had cancer to boot. So she is on quite a few meds. I continually

have her doctors go over her meds to make sure they all get along together.

Please get her to the right doctors asap. The more you know the better you

can take care of her.

You and your Mom are in my daily prayers.

Hugs to you

Jacqui

[Guest guest]

Not being an MD, I wouldn't attempt to diagnose your mother. In terms of

actual handling of the disease, I'm not sure a diagnosis is really absolutely

necessary. My Dad was diagnosed in 1997, early in the disease when he was

having

falls, some Parkinson-like symptoms and one day was talking to my husband

(who lives an hour away from him) in the closet. It was this last inappropriate

activity that brought us to a new neurologist who made the diagnosis. Did

giving it a name really matter? Not so much in terms of treatment, but it

helps

to give it a name and know that the various symptoms are known to the

disease. Because of the fluctuations of symptoms, it's easy to think that

someone

isn't really ill, maybe " milking " a situation or " faking " it. It's helpful to

know that the fluctuations are part and parcel of this miserable disease.

My Dad's episode with unreality lasted on and off for several weeks and

although he's become a much sicker, frailer man, has never recurred in the same

way. There are times when his blood pressure is very so low that he's not

quite

sure of where he is for very brief durations. At times he has has trouble

with judgement and direction, but on the whole is quite rooted in reality.

I wish you well in handling your mother's illness. It's a roller coaster.

The silver lining for me is that I've gotten much closer to my Dad because of

his illness and I've learned love and patience in a way that I never

experienced before, even as a parent to three children.

This board is a wonderful place to ask questions, get information and

support. There are some very loving and expressive people here, Although I'm

not a

" regular " poster, I look forward to reading the posts daily.

Gitch

[Guest guest]

,

Welcome! My Mom has been gone for 2 years and your information looked

so familiar.

I hate to rain on everyone else's parade, but having never gotten a

diagnosis for my mother, I went to specialists, and they almost

destroyed Mom. So even if you find specialists, make sure they are

aware of LBD.

THe clue that I finally had was the falls Mom was having way back in the

beginning. She never had tremors, and was first diagnosed with AD.

She lived away from me and by the time I found out all of what was

happening, she would not come and live with me until the MD gave her no

alternatives.

I had her for 3 years and she slept every other night. No one ever

believed me when I said every other night and that is all she slept. It

was the specialist who took her legs out from under her by giving her

meds he should have never given her., Mom could never take much in the

line of meds at all. When I gave her meds the MD prescribed, I usually

cut them in half or quarters.. When nothing else worked that did.

Please find some one who knows what they are doing.

Donna R