Re: lost brain mass (was: Lewy Body and Parkinson's Dementia)

[Guest guest]

I didn't think there was much brain atrophy in LBD....??

>

> Thank you for this website. My mother, 80 yrs old, was diagnosed

last

> week with LBD. In February we were told that she had literally lost

> brain mass, likened to someone who has lost weight. Where does the

> weight go? Well that's where her brain went. She's had " dreams " for

> many months, and now we are told they are hallucinations and that is

> part of LBD. Originally we had been told that it was Alzheimer's and

> UTI when the dreams got really bad. Now we know it's LBD. This is

> all very new to me and my siblings. Any info you can supply will be

> greatly appreciated.

>

[Guest guest]

Well it is 4 AM! I have been up reading LBD " stuff " for several hours. The

Lewy Hours of the morning <grins>.

Doctors describing Lewy Body Disease, along with longer discriptive words,

some times use the adjectivies " Diffuse, Diverse, and Trophic " (same root as

atrophy = which means something like 'to eat away').

Basically with the kind of LBD that my mother had, the doctor told us that her

brain cells were dying . However, his words were kinder: disguised in longer 50

cent words. None the less, they are dying, " being eaten away " across the

spectrum of brain.

My mom's LBD wasn't attacking just a single region of the brain, as in

Alzheimers. That is probably why she could do " show time " and seem so normal,

and then be really odd at other times. One of the papers that I read this

morning talked about " Fluctuating Consciousness "

http://www.pdcaregiver.org/LewyDisease.html

The url below shortened up with (tinyurl) leads to a whole book on LBD (

over 500 pages. Most of the pages of the book, ( but not all of the pages )

are available to read on google books site.

http://tinyurl.com/2jn2bc

Author - 1996 - Medical - 541 pages

In fact, diffuse Lewy body disease may be the second most common form of ...

Diverse denominations, such as 'cortical Lewy body dementia'

What was frustrating for me, reading and skimming this book, was that for

years, my mother's doctors had access to this well of knowledge. Yet initially,

her diagnosis was just " Parkinsons " . They saw her every couple months, and

basically did nothing other than just upping the dosage of levo-dopa.

Mom never had PD tremors. The heavier dosages of Levo-dopa didn't help to

make her move any faster, but rather contributed to her halucinations, and

disorientaton " the dizzys " she call them.

Dann

rriddle_travel wrote:

I didn't think there was much brain atrophy in LBD....??

>

> Thank you for this website. My mother, 80 yrs old, was diagnosed

last

> week with LBD. In February we were told that she had literally lost

> brain mass, likened to someone who has lost weight. Where does the

> weight go? Well that's where her brain went. She's had " dreams " for

> many months, and now we are told they are hallucinations and that is

> part of LBD. Originally we had been told that it was Alzheimer's and

> UTI when the dreams got really bad. Now we know it's LBD. This is

> all very new to me and my siblings. Any info you can supply will be

> greatly appreciated.

>

[Guest guest]

The neurologist didn't use the word atrophy. He used the words lost, vanished,

disappeared, etc. I asked if he meant atrophy and he said absolutely not. He

meant disappeared. Her MRI showed equal parts on both sides of her brain that

no longer existed. And as I said he said it was like someone who lost weight...

where does the lost weight go? I could tell that he was just as surprised at

this finding as I was. He also said that Mom should go through a complete

evaluation (written that takes about 3 hours) to see exactly what functions have

been lost.

Well, Mom can't sit through something that long and exhausting. She tires very

easily from just moving from one room to another and now she nods off quite

often during the day.

Evidently last night, as I slept pretty soundly, she had hallucinations and I

found things moved around this morning. She accused me of not caring and

well... I lost my temper and on it goes from there. I know that she is upset by

what is happening to her, but does she realize it's happening to all of us too?

rriddle_travel wrote:

I didn't think there was much brain atrophy in LBD....??

>

> Thank you for this website. My mother, 80 yrs old, was diagnosed

last

> week with LBD. In February we were told that she had literally lost

> brain mass, likened to someone who has lost weight. Where does the

> weight go? Well that's where her brain went. She's had " dreams " for

> many months, and now we are told they are hallucinations and that is

> part of LBD. Originally we had been told that it was Alzheimer's and

> UTI when the dreams got really bad. Now we know it's LBD. This is

> all very new to me and my siblings. Any info you can supply will be

> greatly appreciated.

>

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

Be a better sports nut! Let your teams follow you with Yahoo Mobile. Try it now.

[Guest guest]

Martie,

My guess is that if you have an MD who hasn't seen that and doesn't call it

atrophy, there is a problem. (With the MD.) I would find one who understand

Dementia! There are few elderly today who wouldn't have some shrinkage of the

brain even without dementia.

I would find one who works with the elderly and who understands dementia. I

wouldn't put my Mom through a three hour test until they were in the very early

stages. It doesn't sound like you Mom is in the early stages.

No, You Mom doesn't know what she is putting you through, even though it seems

like she does. Her mind is not functioning in a reasonable way. She really is

doing the best she can do. I just had to keep reminding myself that Mom had

digressed in her abilities. It is like taking a teenager and just keep moving

backward. I couldn't expect my 4 year old g-daughter to understand some things

either. It is very similar.

We have to change our expectations. They can't do the same things they use to

be able to do. When I found myself getting frustrated, I had to remind myself

of how her level of frustration was that no one understand and countered

everything I said and did. And there is nothing they can do about it.

Hope this helps. I know how frustrating it can be.

Hugs,

Donna R

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in

a nh.

She was almost 89 when she died in '02. No dx other than mine.

Re: Re: lost brain mass (was: Lewy Body and Parkinson's

Dementia)

The neurologist didn't use the word atrophy. He used the words lost, vanished,

disappeared, etc. I asked if he meant atrophy and he said absolutely not. He

meant disappeared. Her MRI showed equal parts on both sides of her brain that

no longer existed. And as I said he said it was like someone who lost weight...

where does the lost weight go? I could tell that he was just as surprised at

this finding as I was. He also said that Mom should go through a complete

evaluation (written that takes about 3 hours) to see exactly what functions have

been lost.

Well, Mom can't sit through something that long and exhausting. She tires very

easily from just moving from one room to another and now she nods off quite

often during the day.

Evidently last night, as I slept pretty soundly, she had hallucinations and I

found things moved around this morning. She accused me of not caring and

well... I lost my temper and on it goes from there. I know that she is upset by

what is happening to her, but does she realize it's happening to all of us too?

rriddle_travel wrote:

I didn't think there was much brain atrophy in LBD....??

>

> Thank you for this website. My mother, 80 yrs old, was diagnosed

last

> week with LBD. In February we were told that she had literally lost

> brain mass, likened to someone who has lost weight. Where does the

> weight go? Well that's where her brain went. She's had " dreams " for

> many months, and now we are told they are hallucinations and that is

> part of LBD. Originally we had been told that it was Alzheimer's and

> UTI when the dreams got really bad. Now we know it's LBD. This is

> all very new to me and my siblings. Any info you can supply will be

> greatly appreciated.

>

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

Be a better sports nut! Let your teams follow you with Yahoo Mobile. Try it now.

[Guest guest]

I think the MD may be making a point that it wasn't atrophy from

disuse; ie, her brain didn't atrophy because she stopped using it, it

experienced generalized cell death and cortical volume loss.

That said, MRI and autopsy studies in DLB have generally found that

DLB symptoms are less a function of overall volume loss, and more a

function of death of very specific cells that generate certain

neurotransmitters which are then distributed through the brain.

Research initially focused on dopamine (the PD model), and

acetylcholine (like early AD models) and is just starting to touch on

orexin/hypocretin and vasopressin. It's the targeted loss of these

cells in brains that look otherwise normal that leads to DLB symptoms.

In my cursory review, I can tell you that despite symptoms that are

extremely florid if untreated (every single one of the major and

supportive symptoms, at a level that individually would impair

function), Cal's MRI is actually better looking than age-matched

controls. In his neuropsych evaluations, his problems were strongly

focal and his scores were otherwise in the upper 5% for his

age/education range. DLB is not a disease of general brain atrophy -

if it were, it wouldn't be as treatable as it is.

(nb, I'm back from Phoenix, mom is on the path to recovery after

getting some extremely clever radiation that took just five days and

doesn't leave you burnt or scarred up like the old-time technology,

and things are getting back to normal here. She's expected to make a

full functional recovery in the coming weeks. I can't say enough

wonderful things about the neuro and oncology services at Mayo in

sdale.)

[Guest guest]

Dear ,

Thank you for your information. I find that every bit I'm being given by all

of you is precious. We are all in the same situation but in different stages.

Thanks again.

Martie Eichfeld

epthompson wrote:

I think the MD may be making a point that it wasn't atrophy from

disuse; ie, her brain didn't atrophy because she stopped using it, it

experienced generalized cell death and cortical volume loss.

That said, MRI and autopsy studies in DLB have generally found that

DLB symptoms are less a function of overall volume loss, and more a

function of death of very specific cells that generate certain

neurotransmitters which are then distributed through the brain.

Research initially focused on dopamine (the PD model), and

acetylcholine (like early AD models) and is just starting to touch on

orexin/hypocretin and vasopressin. It's the targeted loss of these

cells in brains that look otherwise normal that leads to DLB symptoms.

In my cursory review, I can tell you that despite symptoms that are

extremely florid if untreated (every single one of the major and

supportive symptoms, at a level that individually would impair

function), Cal's MRI is actually better looking than age-matched

controls. In his neuropsych evaluations, his problems were strongly

focal and his scores were otherwise in the upper 5% for his

age/education range. DLB is not a disease of general brain atrophy -

if it were, it wouldn't be as treatable as it is.

(nb, I'm back from Phoenix, mom is on the path to recovery after

getting some extremely clever radiation that took just five days and

doesn't leave you burnt or scarred up like the old-time technology,

and things are getting back to normal here. She's expected to make a

full functional recovery in the coming weeks. I can't say enough

wonderful things about the neuro and oncology services at Mayo in

sdale.)

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

Be a better pen pal. Text or chat with friends inside Yahoo! Mail. See how.

[Guest guest]

Dear Donna,

Mom is seeing a geriatric neurologist at the New Jersey Institute for

Successful Aging which is affiliated with UMDNJ hospitals. I am more confident

with the info he has given us than with her previous neurologist.

As I told Imogene, I really may have misunderstood him last March. Mom has

deteriorated so much since then that I'm just very worried.

Thanks for your information and caring.

Martie

Donna Mido wrote:

Martie,

My guess is that if you have an MD who hasn't seen that and doesn't call it

atrophy, there is a problem. (With the MD.) I would find one who understand

Dementia! There are few elderly today who wouldn't have some shrinkage of the

brain even without dementia.

I would find one who works with the elderly and who understands dementia. I

wouldn't put my Mom through a three hour test until they were in the very early

stages. It doesn't sound like you Mom is in the early stages.

No, You Mom doesn't know what she is putting you through, even though it seems

like she does. Her mind is not functioning in a reasonable way. She really is

doing the best she can do. I just had to keep reminding myself that Mom had

digressed in her abilities. It is like taking a teenager and just keep moving

backward. I couldn't expect my 4 year old g-daughter to understand some things

either. It is very similar.

We have to change our expectations. They can't do the same things they use to be

able to do. When I found myself getting frustrated, I had to remind myself of

how her level of frustration was that no one understand and countered everything

I said and did. And there is nothing they can do about it.

Hope this helps. I know how frustrating it can be.

Hugs,

Donna R

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in

a nh.

She was almost 89 when she died in '02. No dx other than mine.

Re: Re: lost brain mass (was: Lewy Body and Parkinson's

Dementia)

The neurologist didn't use the word atrophy. He used the words lost, vanished,

disappeared, etc. I asked if he meant atrophy and he said absolutely not. He

meant disappeared. Her MRI showed equal parts on both sides of her brain that no

longer existed. And as I said he said it was like someone who lost weight...

where does the lost weight go? I could tell that he was just as surprised at

this finding as I was. He also said that Mom should go through a complete

evaluation (written that takes about 3 hours) to see exactly what functions have

been lost.

Well, Mom can't sit through something that long and exhausting. She tires very

easily from just moving from one room to another and now she nods off quite

often during the day.

Evidently last night, as I slept pretty soundly, she had hallucinations and I

found things moved around this morning. She accused me of not caring and well...

I lost my temper and on it goes from there. I know that she is upset by what is

happening to her, but does she realize it's happening to all of us too?

rriddle_travel wrote:

I didn't think there was much brain atrophy in LBD....??

>

> Thank you for this website. My mother, 80 yrs old, was diagnosed

last

> week with LBD. In February we were told that she had literally lost

> brain mass, likened to someone who has lost weight. Where does the

> weight go? Well that's where her brain went. She's had " dreams " for

> many months, and now we are told they are hallucinations and that is

> part of LBD. Originally we had been told that it was Alzheimer's and

> UTI when the dreams got really bad. Now we know it's LBD. This is

> all very new to me and my siblings. Any info you can supply will be

> greatly appreciated.

>

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

Be a better sports nut! Let your teams follow you with Yahoo Mobile. Try it now.

[Guest guest]

Hey,

Just to add to this discussion - my Dad has had at least two MRIs since he has

been exhibiting DLB behaviour / physical symptoms (he has never " officially "

been diagnosed with DLB) which showed his brain has shrunken. I saw the MRI -

the actual brain mass is smaller than a regular person, but if there were actual

regions of the brain that the brain has lost mass from - I can't answer that

question. A neurologist did not review the scan, as the family doc and the

psychiatrist were looking for organic irregularities that were causing the

bizarre behaviour and physical problems. (i.e.: brain tumor)

The psychiatrist has attributed it to alcohol abuse. This is a common precursor

to DLB, whether it causes DLB, I don't know.

He too was a master at " Show time! " and still hallucinates, but not nearly as

badly as he used to, as now they adjust his meds as needed. He is on 50 mg of

seroquel daily - 25 mg morning, and 25 mg at bedtime.

Dad was, and still is a highly intelligent person. He too, did not lose this

brain mass from inactivity. He has a VERY active imagination, and was a very

busy guy before this snuck up on him.

Re: lost brain mass (was: Lewy Body and Parkinson's

Dementia)

I didn't think there was much brain atrophy in LBD....??

>

> Thank you for this website. My mother, 80 yrs old, was diagnosed

last

> week with LBD. In February we were told that she had literally lost

> brain mass, likened to someone who has lost weight. Where does the

> weight go? Well that's where her brain went. She's had " dreams " for

> many months, and now we are told they are hallucinations and that is

> part of LBD. Originally we had been told that it was Alzheimer's and

> UTI when the dreams got really bad. Now we know it's LBD. This is

> all very new to me and my siblings. Any info you can supply will be

> greatly appreciated.

>

Be smarter than spam. See how smart SpamGuard is at giving junk email the

boot with the All-new Yahoo! Mail. Click on Options in Mail and switch to New

Mail today or register for free at http://mail.yahoo.ca