Re: Taking Care of Mom

[Guest guest]

Hi , Welcome to this wonderful LBD List. I can't really help you as

my husband has not progressed as far as your Mom. I will say this, LBD is

different from AD. So that is confirmed. Some people have a little AD mixed in,

which sometimes makes it difficult to diagnose what it is for sure.

It sounds as if your mother has Parkinsonism with the LBD which is most

common, and may even have some frontal lobe problems that cause apathy.

I am sure in time a few answers will appear.

Imogene

Caregiver for my True Texas Gentleman husband of 35 years. He has LBD with

Parkinsonism, and Frontal Lobe Disease with Apathy, ans AD

In a message dated 5/21/2006 1:23:08 AM Central Daylight Time,

shellkocz@... writes:

Hi everyone - I am new to boards. Mom was diagnosed with LBD almost

3 years ago. Can anyone tell me what to expect with this disease.

Mom has other issues, macular degeneration, bipolor disorder and

type II diabetes. She has been in and out of hospitals last 4 years

with pneumonia and lithium toxicity. She has stopped taking lithium

as of 2 years ago and managing quite well on zyprexa and lexapro.

Dad passed away 2 years ago with Alzheimers and they say LBD is

similar but I do not see any similarities. With Alz. we saw a

marked decline with dad but Moms decline seems much slower. Her

neuro. diagnosed definintely when he saw her PET/SPECT scan

results. Mom has alot of stiffnes, shuffling gait. Had

hallucinations (bus coming through living room, flowers growing on

walls, etc.) 2 years ago but those have stopped. She has had some

memory decline, but not overly significant. Still recognizes family

and understands everything going on around her, forgets time and

which day it is, but remembers everything about the red sox. What I

am seeing is disinterest in great=grandkids occasionally and she is

sleeping alot. Sometimes 12 hours a night and off and on all day.

Mothers day she was falling asleep with the whole family here, kids

and all and she nodded off sitting up at kitchen table. Quess my

question is how do the symptoms start and progress. Are there

stages as in Alz. Dr. has not given me a clear answer. Mom is

living with my husband and myself in an in-law we built on when dad

got diagnosed. Its been a long 4 years and I need to know what to

expect. This disease to me is very different from Alzheimers.

thanks for your time. Shell

[Guest guest]

Hi Shell - welcome to the board. Some good sites to read about LBD

are the following:

www.lbda.org

www.lewybodyjournal.org

http://www.zarcrom.com/users/alzheimers/odem/lewy00.html

http://www.postgradmed.com/issues/2003/05_03/stewart2.htm

Hope the sites help answer some of your questions. You're correct

that it's different than Alzheimers. Some memory issues are similar

to ALZ but then add on parkinsonism, hallucinations, depression, REM

sleep disorder, and I may be missing a couple. Also with LBD there

are fluctuations. I see them even now with my mom who is in a NH.

Friday's visit she was very confused - kept trying to tell me

something but couldn't get the words out. Unfortunately this time I

couldn't grasp what she was trying to tell me. But Saturday's visit

was much better. She made better sense and was able to tell me some

things - other things were still confusing. And we actually shared a

laugh... The best thing to describe LBD - a roller coaster ride!

You're in the right place - welcome and be sure to read the files and

databases on the board - some useful info there. My mom's " LBD story "

is on there too - hopefully something from it will help you.

; 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) and as of 4/21 on Exelon.

>

> Hi everyone - I am new to boards. Mom was diagnosed with LBD

almost

> 3 years ago. Can anyone tell me what to expect with this disease.

> Mom has other issues, macular degeneration, bipolor disorder and

> type II diabetes. She has been in and out of hospitals last 4

years

> with pneumonia and lithium toxicity. She has stopped taking

lithium

> as of 2 years ago and managing quite well on zyprexa and lexapro.

> Dad passed away 2 years ago with Alzheimers and they say LBD is

> similar but I do not see any similarities. With Alz. we saw a

> marked decline with dad but Moms decline seems much slower. Her

> neuro. diagnosed definintely when he saw her PET/SPECT scan

> results. Mom has alot of stiffnes, shuffling gait. Had

> hallucinations (bus coming through living room, flowers growing on

> walls, etc.) 2 years ago but those have stopped. She has had some

> memory decline, but not overly significant. Still recognizes

family

> and understands everything going on around her, forgets time and

> which day it is, but remembers everything about the red sox. What

I

> am seeing is disinterest in great=grandkids occasionally and she is

> sleeping alot. Sometimes 12 hours a night and off and on all day.

> Mothers day she was falling asleep with the whole family here, kids

> and all and she nodded off sitting up at kitchen table. Quess my

> question is how do the symptoms start and progress. Are there

> stages as in Alz. Dr. has not given me a clear answer. Mom is

> living with my husband and myself in an in-law we built on when dad

> got diagnosed. Its been a long 4 years and I need to know what to

> expect. This disease to me is very different from Alzheimers.

> thanks for your time. Shell

>

[Guest guest]

, thank you for the sites on LBD. I have been going to Google.com

and have found many there, but this puts it right at my finger tips.

Thanks

Imogene

Caregiver for my True Texas Gentleman husband of 35 years. He has LBD with

Parkinsonism, and Frontal Lobe Disease with Apathy, and AD. (The Apathy is

caused by frontal lobe damaged cells. MY husband is not depressed. I haven't

seen it, and according to the Geriatric/Psycriatrist Test, my LO isn't

depressed.)

In a message dated 5/21/2006 6:31:06 AM Central Daylight Time,

octoryrose@... writes:

www.lbda.org

www.lewybodyjournal.org

http://www.zarcrom.com/users/alzheimers/odem/lewy00.html

http://www.postgradmed.com/issues/2003/05_03/stewart2.htm

[Guest guest]

Thank you Imogene - what kind of symptoms is your husband showing...

Iward27663@... wrote:

Hi , Welcome to this wonderful LBD List. I can't really help you as

my husband has not progressed as far as your Mom. I will say this, LBD is

different from AD. So that is confirmed. Some people have a little AD mixed in,

which sometimes makes it difficult to diagnose what it is for sure.

It sounds as if your mother has Parkinsonism with the LBD which is most

common, and may even have some frontal lobe problems that cause apathy.

I am sure in time a few answers will appear.

Imogene

Caregiver for my True Texas Gentleman husband of 35 years. He has LBD with

Parkinsonism, and Frontal Lobe Disease with Apathy, ans AD

In a message dated 5/21/2006 1:23:08 AM Central Daylight Time,

shellkocz@... writes:

Hi everyone - I am new to boards. Mom was diagnosed with LBD almost

3 years ago. Can anyone tell me what to expect with this disease.

Mom has other issues, macular degeneration, bipolor disorder and

type II diabetes. She has been in and out of hospitals last 4 years

with pneumonia and lithium toxicity. She has stopped taking lithium

as of 2 years ago and managing quite well on zyprexa and lexapro.

Dad passed away 2 years ago with Alzheimers and they say LBD is

similar but I do not see any similarities. With Alz. we saw a

marked decline with dad but Moms decline seems much slower. Her

neuro. diagnosed definintely when he saw her PET/SPECT scan

results. Mom has alot of stiffnes, shuffling gait. Had

hallucinations (bus coming through living room, flowers growing on

walls, etc.) 2 years ago but those have stopped. She has had some

memory decline, but not overly significant. Still recognizes family

and understands everything going on around her, forgets time and

which day it is, but remembers everything about the red sox. What I

am seeing is disinterest in great=grandkids occasionally and she is

sleeping alot. Sometimes 12 hours a night and off and on all day.

Mothers day she was falling asleep with the whole family here, kids

and all and she nodded off sitting up at kitchen table. Quess my

question is how do the symptoms start and progress. Are there

stages as in Alz. Dr. has not given me a clear answer. Mom is

living with my husband and myself in an in-law we built on when dad

got diagnosed. Its been a long 4 years and I need to know what to

expect. This disease to me is very different from Alzheimers.

thanks for your time. Shell

[Guest guest]

, it is hard to say. He doesn't drive, or use the lawn mower.

Projects are too difficult to figure out. He painted a Carrousel that I was

making

our of a hanging lamp, and he sprayed all the paper that I had careful taped

over the parts I didn't want painted. But, he didn't spray the glass that I

wanted painted. He had long drips, but I said, " That's alright, as it is a gift

that you did while you are ill. " We both decided the color was too dark, so

we bought a can of lighter pink and he made such a mess of the paint that now

I have to scrape it all off, and repaint it myself.

Everything he has touched falls far below par for him. He doesn't do much

anymore. Mostly just sits and looks at magazine or watches TV. He usually naps

a little in the mornings, and sleeps a couple of hours in the afternoons.

He has hallucinations mostly at night. He converses very fluently, but

sometimes

things are said inappropriately and at the wrong time. Sometimes his

sentences don't make any sense at all.

I have not been keeping a journal on everything, and I need to do that. I

made a three page list the give to his doctor, but have not kept a day to day

journal.

I am too tired right now to think very clearly, so I will tell you more when

I am a little more chipper.

Imogene

In a message dated 5/21/2006 11:10:31 PM Central Daylight Time,

shellkocz@... writes:

Thank you Imogene - what kind of symptoms is your husband showing...

Iward27663@... wrote:

Hi , Welcome to this wonderful LBD List. I can't really help you as

my husband has not progressed as far as your Mom. I will say this, LBD is

different from AD. So that is confirmed. Some people have a little AD mixed

in,

which sometimes makes it difficult to diagnose what it is for sure.

It sounds as if your mother has Parkinsonism with the LBD which is most

common, and may even have some frontal lobe problems that cause apathy.

I am sure in time a few answers will appear.

Imogene

Caregiver for my True Texas Gentleman husband of 35 years. He has LBD with

Parkinsonism, and Frontal Lobe Disease with Apathy, ans AD

In a message dated 5/21/2006 1:23:08 AM Central Daylight Time,

shellkocz@... writes:

Hi everyone - I am new to boards. Mom was diagnosed with LBD almost

3 years ago. Can anyone tell me what to expect with this disease.

Mom has other issues, macular degeneration, bipolor disorder and

type II diabetes. She has been in and out of hospitals last 4 years

with pneumonia and lithium toxicity. She has stopped taking lithium

as of 2 years ago and managing quite well on zyprexa and lexapro.

Dad passed away 2 years ago with Alzheimers and they say LBD is

similar but I do not see any similarities. With Alz. we saw a

marked decline with dad but Moms decline seems much slower. Her

neuro. diagnosed definintely when he saw her PET/SPECT scan

results. Mom has alot of stiffnes, shuffling gait. Had

hallucinations (bus coming through living room, flowers growing on

walls, etc.) 2 years ago but those have stopped. She has had some

memory decline, but not overly significant. Still recognizes family

and understands everything going on around her, forgets time and

which day it is, but remembers everything about the red sox. What I

am seeing is disinterest in great=grandkids occasionally and she is

sleeping alot. Sometimes 12 hours a night and off and on all day.

Mothers day she was falling asleep with the whole family here, kids

and all and she nodded off sitting up at kitchen table. Quess my

question is how do the symptoms start and progress. Are there

stages as in Alz. Dr. has not given me a clear answer. Mom is

living with my husband and myself in an in-law we built on when dad

got diagnosed. Its been a long 4 years and I need to know what to

expect. This disease to me is very different from Alzheimers.

thanks for your time. Shell

[Guest guest]

Hi Imogene - sounds like my Dad. Its harder with Mom. Since she developed

Macular Degeneration about 15 yrs ago she doesnt do much. My Dad took over

everything, cooking, cleaning,driving,checkbooks. When he was diagnosed with

ALZ we knew we were in for it. After Dad died Mom was still dusting and using

the microwave with the help of velcro (we love velcro), now it is a struggle for

her to get out of recliner. She is gaining weight and her legs and back hurt

alot (spinal stenosis). Thank goodness they allowed us to sell their house and

put an in-law addition on ours. At the time Mom had not been diagnosed with LBD

so I figured we would be taking care of just Dad. Boy did I get a double

whammy.

Iward27663@... wrote:

, it is hard to say. He doesn't drive, or use the lawn mower.

Projects are too difficult to figure out. He painted a Carrousel that I was

making

our of a hanging lamp, and he sprayed all the paper that I had careful taped

over the parts I didn't want painted. But, he didn't spray the glass that I

wanted painted. He had long drips, but I said, " That's alright, as it is a gift

that you did while you are ill. " We both decided the color was too dark, so

we bought a can of lighter pink and he made such a mess of the paint that now

I have to scrape it all off, and repaint it myself.

Everything he has touched falls far below par for him. He doesn't do much

anymore. Mostly just sits and looks at magazine or watches TV. He usually naps

a little in the mornings, and sleeps a couple of hours in the afternoons.

He has hallucinations mostly at night. He converses very fluently, but

sometimes

things are said inappropriately and at the wrong time. Sometimes his

sentences don't make any sense at all.

I have not been keeping a journal on everything, and I need to do that. I

made a three page list the give to his doctor, but have not kept a day to day

journal.

I am too tired right now to think very clearly, so I will tell you more when

I am a little more chipper.

Imogene

In a message dated 5/21/2006 11:10:31 PM Central Daylight Time,

shellkocz@... writes:

Thank you Imogene - what kind of symptoms is your husband showing...

Iward27663@... wrote:

Hi , Welcome to this wonderful LBD List. I can't really help you as

my husband has not progressed as far as your Mom. I will say this, LBD is

different from AD. So that is confirmed. Some people have a little AD mixed

in,

which sometimes makes it difficult to diagnose what it is for sure.

It sounds as if your mother has Parkinsonism with the LBD which is most

common, and may even have some frontal lobe problems that cause apathy.

I am sure in time a few answers will appear.

Imogene

Caregiver for my True Texas Gentleman husband of 35 years. He has LBD with

Parkinsonism, and Frontal Lobe Disease with Apathy, ans AD

In a message dated 5/21/2006 1:23:08 AM Central Daylight Time,

shellkocz@... writes:

Hi everyone - I am new to boards. Mom was diagnosed with LBD almost

3 years ago. Can anyone tell me what to expect with this disease.

Mom has other issues, macular degeneration, bipolor disorder and

type II diabetes. She has been in and out of hospitals last 4 years

with pneumonia and lithium toxicity. She has stopped taking lithium

as of 2 years ago and managing quite well on zyprexa and lexapro.

Dad passed away 2 years ago with Alzheimers and they say LBD is

similar but I do not see any similarities. With Alz. we saw a

marked decline with dad but Moms decline seems much slower. Her

neuro. diagnosed definintely when he saw her PET/SPECT scan

results. Mom has alot of stiffnes, shuffling gait. Had

hallucinations (bus coming through living room, flowers growing on

walls, etc.) 2 years ago but those have stopped. She has had some

memory decline, but not overly significant. Still recognizes family

and understands everything going on around her, forgets time and

which day it is, but remembers everything about the red sox. What I

am seeing is disinterest in great=grandkids occasionally and she is

sleeping alot. Sometimes 12 hours a night and off and on all day.

Mothers day she was falling asleep with the whole family here, kids

and all and she nodded off sitting up at kitchen table. Quess my

question is how do the symptoms start and progress. Are there

stages as in Alz. Dr. has not given me a clear answer. Mom is

living with my husband and myself in an in-law we built on when dad

got diagnosed. Its been a long 4 years and I need to know what to

expect. This disease to me is very different from Alzheimers.

thanks for your time. Shell