Re: No certain diagnosis yet - does this sound familiar to anyone?

[Guest guest]

One thing is that a person can have both LBD and AD.

My mother's paranoia was STAGGERING. But you could be describing my own

mother in your words, to a T...

> My 83-year-old mother has been diagnosed with Mild Cognitive Impairment after

neuropsych testing. A neurologist said he can't tell yet whether she has DLB or

AD, although he did say that her memory lapses were not consistent with the

pattern of AD. She does have hallucinations - for instance, she thought there

was a frog on the floor of her 5th-floor apartment, she thought the woods around

her were brick buildings, and she thought we were driving on a bridge with

houses far below (we weren't). At the same time, her memory seems to indicate

some " Swiss cheese brain " - she can't remember that one of my brothers lived in

the same town (5 years ago), that she ever visited Vancouver (about 15 years

ago) or that she attended a friend's birthday party (a few months ago), so it's

not just recent memories but long-ago memories too. Because of her memory

lapses, she also has very paranoid ideation sometimes, and will come up with the

most bizarre stories to explain things. For instance, that someone stole some

art objects and temporarily stashed them in her apartment - then the intruder

became angry when he returned to collect the objects (but she'd given one away)

so he broke the towel bar in her bathroom. (In real life, the art objects were a

gift from my brother for Mother's Day last year, and she regifted one to a

friend.) I couldn't make this stuff up if I tried. Finally, for the past 3

years she's been saying (constantly) that " the eyes are getting worse and worse "

and that no glasses help. She's even gone to the ER at a famous eye hospital

several times, each time to be told that her eyes are physically fine (although

she has glaucoma). It seems that her brain isn't processing the visual input

correctly. I believe that she probably has DLB, based on what I've read, but

I'm wondering if the paranoia and memory loss is more of an indication that she

has AD. She does not have parkinsonian symptoms, although the neurologist said

that could come later - and I see from a recent post here that some DLB

sufferers never experience it. Does any of this ring a bell for any of you?

Any insight based on your experience? I've read the Whitworths' book on DLB and

much of it sounds like my mother. Any input is welcome. (No need to recommend

books - I've already checked out everything I can find in the library and on

Amazon!) Thanks so much in advance.

--

His,

Sherry

daughter/guardian of , dx 4/09 with LBD, living in a nearby NH

[Guest guest]

-

DLB typically co-occurs with AD. " Pure DLB " is quite unusual. However, note

that the diagnostic accuracy for both pure DLB and DLB+AD is less than 33%!

Most of those misdiagnosed actually had AD.

Nothing can be known until a post-mortem brain tissue analysis. If your mother

is being seen at one of the top dementia centers in the US, then find out if

they have a brain bank. That would be a good place to consider donating your

mother's brain.

Robin

>

> My 83-year-old mother has been diagnosed with Mild Cognitive Impairment after

neuropsych testing. A neurologist said he can't tell yet whether she has DLB or

AD, although he did say that her memory lapses were not consistent with the

pattern of AD. ... She does not have parkinsonian symptoms, although the

neurologist said that could come later - and I see from a recent post here that

some DLB sufferers never experience it. Does any of this ring a bell for any of

you? Any insight based on your experience? I've read the Whitworths' book on

DLB and much of it sounds like my mother. Any input is welcome. (No need to

recommend books - I've already checked out everything I can find in the library

and on Amazon!) Thanks so much in advance.

>

[Guest guest]

says: " It seems that her brain isn't processing the visual input

correctly. " What a very apt description!! I had no real proof but I think

that was true of my husband. I called it spatial problems but what you say,

is exactly it I believe. At the very beginning of our difficulty, he would

drive on the wrong side of the road. (we are rural dwellers, thank

goodness.)As LBD progressed I noticed lots of things that he did that made

me think his vision and perception was affected. I wish you good luck in

your struggles and hope that the advances being made might help your mother

and that your siblings step up and help throughout.

Leona: Caregiver for husband Ray, age 68, diagnosed 2/04 with Parkinson's

Disease. Changed doctors, diagnosed 6/06 with LBD. Almost continual downhill

slide no matter what drugs we try. 5/2/08 Ray was placed in Sunrise Nursing

Home in Oswego, NY, 1 hour from home. So far, so good! Hardest thing I have

ever done in my life, however. 3/19/09 transferred to Samaritan Keep NH in

Watertown, NY closer to home. He passed peacefully at 5:18 am on April 14,

2009. I am handling it OK.

'Love is not finding someone to live with; it's finding someone you don't

want to live without.'

[Guest guest]

Sherry , my mother too has horrible crazy hallucinations. The stories are

bizarre and hard to figure out at times.We have been messing around with meds

right now and it seems they either make her dizzy or crazier. She is on aricept

right now and we are thinking of taking her off because she has fallin 2 times

this week. It is so sad for me to watch the decline of my mom who was once such

a vibrant person become so peranoid and scared.

> > My 83-year-old mother has been diagnosed with Mild Cognitive Impairment

after neuropsych testing. A neurologist said he can't tell yet whether she has

DLB or AD, although he did say that her memory lapses were not consistent with

the pattern of AD. She does have hallucinations - for instance, she thought

there was a frog on the floor of her 5th-floor apartment, she thought the woods

around her were brick buildings, and she thought we were driving on a bridge

with houses far below (we weren't). At the same time, her memory seems to

indicate some " Swiss cheese brain " - she can't remember that one of my brothers

lived in the same town (5 years ago), that she ever visited Vancouver (about 15

years ago) or that she attended a friend's birthday party (a few months ago), so

it's not just recent memories but long-ago memories too. Because of her memory

lapses, she also has very paranoid ideation sometimes, and will come up with the

most bizarre stories to explain things. For instance, that someone stole some

art objects and temporarily stashed them in her apartment - then the intruder

became angry when he returned to collect the objects (but she'd given one away)

so he broke the towel bar in her bathroom. (In real life, the art objects were a

gift from my brother for Mother's Day last year, and she regifted one to a

friend.) I couldn't make this stuff up if I tried. Finally, for the past 3

years she's been saying (constantly) that " the eyes are getting worse and worse "

and that no glasses help. She's even gone to the ER at a famous eye hospital

several times, each time to be told that her eyes are physically fine (although

she has glaucoma). It seems that her brain isn't processing the visual input

correctly. I believe that she probably has DLB, based on what I've read, but

I'm wondering if the paranoia and memory loss is more of an indication that she

has AD. She does not have parkinsonian symptoms, although the neurologist said

that could come later - and I see from a recent post here that some DLB

sufferers never experience it. Does any of this ring a bell for any of you?

Any insight based on your experience? I've read the Whitworths' book on DLB and

much of it sounds like my mother. Any input is welcome. (No need to recommend

books - I've already checked out everything I can find in the library and on

Amazon!) Thanks so much in advance.

>

>

> --

> His,

> Sherry

> daughter/guardian of , dx 4/09 with LBD, living in a nearby NH

>

[Guest guest]

I'm very thankful that most of my mom's hallucinations have been helped

by a mix of meds, all at very low doses. It seems like she's on a lot of

meds but this " cocktail " keeps the hallucinations down to a less

terrifying and manageable level. I hope that your mom's doctor is able

to find something that works for her, that's got to be horrible!

> Sherry , my mother too has horrible crazy hallucinations. The stories are

bizarre and hard to figure out at times.We have been messing around with meds

right now and it seems they either make her dizzy or crazier. She is on aricept

right now and we are thinking of taking her off because she has fallin 2 times

this week. It is so sad for me to watch the decline of my mom who was once such

a vibrant person become so peranoid and scared.

>

>

> >

> > One thing is that a person can have both LBD and AD.

> >

> > My mother's paranoia was STAGGERING. But you could be describing my own

> > mother in your words, to a T...

[Guest guest]

, many of us here have tried to deal with difficulty seeing for our loved

ones, difficulty not helped by wearing their glasses. I had Mom to 2 different

eye doctors through her journey, both of whom claimed the prescription she was

wearing was right for the testing they did, that " something else " was at play.

This started even before we knew there was dementia going on, back in the 90s.

Eventually she didn't even want to wear her glasses as they did nothing for her.

You've come to the right place for support and to get questions answered.

>

> My 83-year-old mother has been diagnosed with Mild Cognitive Impairment after

neuropsych testing. A neurologist said he can't tell yet whether she has DLB or

AD, although he did say that her memory lapses were not consistent with the

pattern of AD. She does have hallucinations - for instance, she thought there

was a frog on the floor of her 5th-floor apartment, she thought the woods around

her were brick buildings, and she thought we were driving on a bridge with

houses far below (we weren't). At the same time, her memory seems to indicate

some " Swiss cheese brain " - she can't remember that one of my brothers lived in

the same town (5 years ago), that she ever visited Vancouver (about 15 years

ago) or that she attended a friend's birthday party (a few months ago), so it's

not just recent memories but long-ago memories too. Because of her memory

lapses, she also has very paranoid ideation sometimes, and will come up with the

most bizarre stories to explain things. For instance, that someone stole some

art objects and temporarily stashed them in her apartment - then the intruder

became angry when he returned to collect the objects (but she'd given one away)

so he broke the towel bar in her bathroom. (In real life, the art objects were a

gift from my brother for Mother's Day last year, and she regifted one to a

friend.) I couldn't make this stuff up if I tried. Finally, for the past 3

years she's been saying (constantly) that " the eyes are getting worse and worse "

and that no glasses help. She's even gone to the ER at a famous eye hospital

several times, each time to be told that her eyes are physically fine (although

she has glaucoma). It seems that her brain isn't processing the visual input

correctly. I believe that she probably has DLB, based on what I've read, but

I'm wondering if the paranoia and memory loss is more of an indication that she

has AD. She does not have parkinsonian symptoms, although the neurologist said

that could come later - and I see from a recent post here that some DLB

sufferers never experience it. Does any of this ring a bell for any of you?

Any insight based on your experience? I've read the Whitworths' book on DLB and

much of it sounds like my mother. Any input is welcome. (No need to recommend

books - I've already checked out everything I can find in the library and on

Amazon!) Thanks so much in advance.

>