Re: NEED YOUR OPINIONS!!!

November 2, 2006

Carol, That Doctor??? Another inept doctor!!! They do tend to be short on my

list anymore. But, they are just people, and they don't know everything.

That is why WE, yes, We are educating them.

We had an MRI done to determine the amount of shrinkage that occurred to

the brain. That can identify areas that are more effected than others, but it

will not identify any one dementia. Nothing but an autopsy at death will truly

identify what dementia it is. But, there are very good Doctors that can run

test, that can pin point it, and they go heavily by what records the

caregivers have been keeping about the patient. The Doctor needs those symptoms

the

caregiver has.

After our first inept doctor, we found a Geriatric/Psychiatrist. We are most

pleased with him. He has done wonders in stalling off my husbands bad times

that are just down the road.

Imogene

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

Parkinsonism. (This month will be 36 years with my love)

In a message dated 11/2/2006 10:21:57 PM Central Standard Time,

carol.incognito@... writes:

Hi Everyone,

I haven't been around, been recuperating from my surgery, feeling

better now.

I sent my Mother's Doctor an email regarding a PET Scan and assisted

living that I have been looking into and this was her EXACT response

tonight via email...

First of all, not everyone agrees that Lewy body dementia is a

diagnosis so it is not clear to me that either the treatment or

prognosis is well-defined. So I definitely would not order a PET

scan myself because I don't know what to do with the result, other

than what we have already tried. If the exelon has been tolerated

well, we can try raising the dose.

If you would like her to have more evaluation, then she should be

seen by a neurologist, which I would be happy to arrange. That

specialist could answer more of your questions and decide if it would

make a difference to do the scan.

The decision to move to assisted living is not based upon whether or

not she has LBD; it is based upon whether she is safe at home. The

assisted living staff can do a formal evaluation and see if she is

appropriate; her cardiac status is stable, so it really depends on

whether they ahve the dementia unit capability - if they do then that

should be a very appropriate facility for her, rather than a nursing

home.

So let me know about the neurologist. END

That is what she wrote word for word. Does anyone have any thoughts

about it? I had told her basically in my email that I wanted to

find out with a PET scan if she has LBD for sure and told her that

others had the test...I told her I was tired of guessing and needed

to know for future decisions...to know for future decisions..

email has been Severe Dementia with possible Lewy Body...

Thanks so much,

Carol Incognito

November 3, 2006

Carol, you need a good doctor!!!!! It is not you!

Get another opinion with one that knows. If you are not sure about doctors,

then try a third. We have been around doctors many, many years, so we can

pretty well " read " them, but someone that hasn't may need to get more than one

or two opinions.

When a doctor questions the need for you to see a Doctor for your Mom's

problems, I would suspect that doctor of being afraid of loosing a patient, and

credibility. I would suspect, period! That is twice now that she has thrown

objections in your path. Don't let her throw you. That is exactly what she is

trying to do. Most Doctors are glad for you to seek another opinion. I

wouldn't go back to her.

Take your diary to your own Neurologist, not a referal, (our referal was

horrible. We found our own) and ask for a mini test, and give him your diary.

Don't suggest any ailment. Let him tell you.

You have learned enough by now to know that an LBD patient is lucid as you

or me one minute and not so the next, or the next day. That is why your Mom

has lived alone for so long.

What shape are her finances in? The ability to " keep the books " is one thing

that goes early on. Did she have hallucinations early on? Of course you

wouldn't know if she was alone. She may not have told you. Nor that she was

putting on " showtime " when you were around or on the phone. Has her decline

been

gradual and steady, or up and down, so that you think she is normal, and then

the next time you turn around she isn't?

Grandual steady decline usually means Alzheimer's with the first thing to

show being memory loss. LBD usually has almost intact memory. But, they can't

figure things out for themselves. They loose the ability to do jobs or chores

they have done all their lives. Cognitive problems is an LBD hallmark.

Again, ask the Neurologist or Geriatric/Psychiatrist (which we have) to give

only the mini test, and to use your notes. That should keep your mother from

a battery of all day testing that will wear her out.

Is your Mom's doctor an accredited Neurologist or Geriatric/Psychologist? Or

is she just an MD? Don't go to her for mental problems if she isn't one or

the other beside an MD.

What are some of your Mom's symptoms? My husband on my looking back, has had

problems since 1995. That is a long time, but his first sign was not being

able to work with figure back then.

It took years for it to develop into full blown LBD. Now without a shadow of

a doubt I know he has LBD. But, you see how long it took for me to even

realize there was a problem? His first hallucination when he was awake told me

something was wrong, and also because he couldn't do jobs that he had always

done. He couldn't figure out how to do them. Does your Mom see things? People

or animals? Not necessarily scary, but just there.

I'll let you alone for a while, but I so want to help if at all possible,

Imogene

In a message dated 11/3/2006 6:01:47 PM Central Standard Time,

carol.incognito@... writes:

Dear Imogene,

Well, I'm glad that you could finally give an answer that I can

answer and that makes sense. If it is just for research, I " m sure

most insurance companies or medicare will probably not pay for it.

That makes sense.

From everything you said, I guess the most important thing is to find

a good doctor that has knowledge of LBD and will more than likely be

able to make the DX jast as in the case of your Don. I will go along

with that and be satisfied. I don't even want to put my Mom through

such a test. I did not know it was intrusive with dye. I don't want

that.

My Mom's Doctor sent me another email this afternoon after I told her

to get me the referral for the neurologist saying, " Are you sure you

really want to put her through going to see a neurologist?really wan

back and asked her why she sounds so against it and I am awaiting her

reply...

I could go in and talk to the Doctor and have a consultation with my

diary on Mom and she could probably DX it right then...just as most

of us on site have done. Maybe it's me and I go into this denial

mode. I think my biggest problem in accepting LBD 100% is that it

has been 6+ years and she has problems, for sure, but she is still

living alone and does not seem to have a lot of the severe problems I

read about on site. And it has not happened quickly. Am I just

lucky or does she not have LBD? That is my dilemma!!!

Well, thanks for your time Imogene...and I hope tonight will be calm

with Don.

Thanks,

Carol Incognito

--- In _LBDcaregivers@LBDcaregiverLBD_ (mailto:LBDcaregivers )

, Iward27663@., Iwa

>

> Maybe I need to do some more research. I have never heard of a PET

Scan

> identifying a dementia. Thanks for your information, . I

will certainly

> look into this further. I sure wish I had known yesterday, and

questioned our

> Doctor.

>

> Well--- I just stopped and called him. He said that a PET scan is

used in

> research study, but is not something used everyday, because all the

test

> identify the illness, and the PET scan will not change the

treatment. It is

> injecting dye into the patient that binds to certain proteins. So

yes, it can

> identify LBD, but as a clinical study in research. he stressed it

was in research.

>

> He said it is not necessary in identifying the dementia, because

the Doctor

> can do that. NO, I guess it's not necessary when you have an

excellent doctor

> as we have. We have never felt more secure than we do with our

Doctor. The

> first one we had was horrible, though.

> Imogene

>

> In a message dated 11/3/2006 9:51:05 AM Central Standard Time,

> jenniferlynnebrock@ jenniferly

>

> Carol,

November 3, 2006

Carol, you have done exceptionally well, and I applaud you for persuing the

PEt scan question. I did not know at first. I know very little even now, but

at least now you are on your way.

Best wishes. Oh how far do you have to travel?

Imogene

In a message dated 11/3/2006 6:05:41 PM Central Standard Time,

carol.incognito@... writes:

Hi Imogene,

It's me again..I no sooner sent the last post to you when I received

an email from the doctor. This is what she wrote:

" It is not a bad idea at all and I think it is often very helpful

support for families. Dr. Fong is very good. I am just alerting you

that it means travelling into Boston a few times. Call them on

Monday and let me know if you need my help. "

By the way, Dr. Fong is at the Beth Israel in Boston which is a

teaching Hospital with Harvard...

That was in response to my writing back to her today asking her if

she thought the testing was a bad idea. That was the impression she

had given. so, that's that...I'll call Monday and take it from there.

Carol Incog

--- In _LBDcaregivers@LBDcaregiverLBD_ (mailto:LBDcaregivers )

, Iward27663@., Iwa

>

> Maybe I need to do some more research. I have never heard of a PET

Scan

> identifying a dementia. Thanks for your information, . I

will certainly

> look into this further. I sure wish I had known yesterday, and

questioned our

> Doctor.

>

> Well--- I just stopped and called him. He said that a PET scan is

used in

> research study, but is not something used everyday, because all the

test

> identify the illness, and the PET scan will not change the

treatment. It is

> injecting dye into the patient that binds to certain proteins. So

yes, it can

> identify LBD, but as a clinical study in research. he stressed it

was in research.

>

> He said it is not necessary in identifying the dementia, because

the Doctor

> can do that. NO, I guess it's not necessary when you have an

excellent doctor

> as we have. We have never felt more secure than we do with our

Doctor. The

> first one we had was horrible, though.

> Imogene

>

> In a message dated 11/3/2006 9:51:05 AM Central Standard Time,

> jenniferlynnebrock@ jenniferly

>

> Carol,

> We recently went to a Geriatric Neurologist at the Baylor College

of

> Medicine because I too want a definite DX. The neurologist we had

been seeing would

> only say " some kind of dementia " , and also seemed to think it

didn't really

> matter what kind. I totally disagree, because we need to now what

is coming in

> the future to TRY to prepare for it. The Geriatric Neuro had a

complete

> neuro-psych test run (that took all day), and we had a PET scan

run last week. He

> told us that the PET scan can identify Lewy Bodies if present. His

initial

> opinion before the tests was Vascular Dementia with possible Lewy

Bodies. The

> PET scan will also show if it is Vascular Dementia.

> So good luck on your " next job " of finding a Dr. who knows about

all the

> different types of Dementia, including LBD. We are going next week

to get the

> results of all the tests. Any DX will be better than being in the

dark about

> the days to come.

>

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

>

November 3, 2006

Hi Meg,

I read your response and I'm sorry to hear that your husband is

sick. I know how difficult it can be. Can I ask you a question,

does have LBD and is that why they did the PET scan? What

did the PET scan show? I would be very appreciative of any info you

could shed on this subject.

My best,

Carol Incognito

>

> My husband had a PET scan..I had them download the PET scan and the

other tests (MRI) etc...that they did on and now have the

disc at home...I also go to the records room ad get copies of all his

records after each hospital stay..mind you he has been in several

hospitals but we finally found the right one for us and he only goes

there now.....

>

> Re: Re: NEED YOUR OPINIONS!!!

>

> Maybe I need to do some more research. I have never heard of a PET

Scan

>

> identifying a dementia. Thanks for your information, . I

will certainly

>

> look into this further. I sure wish I had known yesterday, and

questioned our

>

> Doctor.

>

> Well--- I just stopped and called him. He said that a PET scan is

used in

>

> research study, but is not something used everyday, because all the

test

>

> identify the illness, and the PET scan will not change the

treatment. It is

>

> injecting dye into the patient that binds to certain proteins. So

yes, it can

>

> identify LBD, but as a clinical study in research. he stressed it

was in research.

>

> He said it is not necessary in identifying the dementia, because

the Doctor

>

> can do that. NO, I guess it's not necessary when you have an

excellent doctor

>

> as we have. We have never felt more secure than we do with our

Doctor. The

>

> first one we had was horrible, though.

>

> Imogene

>

> In a message dated 11/3/2006 9:51:05 AM Central Standard Time,

>

> jenniferlynnebrock@ yahoo.com writes:

>

> Carol,

>

> We recently went to a Geriatric Neurologist at the Baylor College

of

>

> Medicine because I too want a definite DX. The neurologist we had

been seeing would

>

> only say " some kind of dementia " , and also seemed to think it

didn't really

>

> matter what kind. I totally disagree, because we need to now what

is coming in

>

> the future to TRY to prepare for it. The Geriatric Neuro had a

complete

>

> neuro-psych test run (that took all day), and we had a PET scan

run last week. He

>

> told us that the PET scan can identify Lewy Bodies if present. His

initial

>

> opinion before the tests was Vascular Dementia with possible Lewy

Bodies. The

>

> PET scan will also show if it is Vascular Dementia.

>

> So good luck on your " next job " of finding a Dr. who knows about

all the

>

> different types of Dementia, including LBD. We are going next week

to get the

>

> results of all the tests. Any DX will be better than being in the

dark about

>

> the days to come.

>

November 3, 2006

Hi Imogene,

Thanks so much for your interest in my Mom. I will try to give you

just a brief chronology of how things have gone...

9/2000 Dad died after 52 years marriage

9/2000 Immed. upon his death she was totally confused and has not

done any clothes, cooking, shopping, gone out alone or anything that

she did before this.

This same Doctor said that this happens sometimes when there is a

death. She was also seeing a psychiatrist at this time and was on

anti-depressent...also, resperidone.

She started having visual hallucinations and was prone to

seeing " cats & dogs " in the house. She also was sure my Dad was

there but she could never see his face. She also develop a real

sleeping problem which she still has. She likes to sleep during the

day and up during the night. But, she has always had disturbances

with sleep ever since I can remember. So, the doctor just sort of

brushed this off and tried to treat with meds like Trazadone and the

resperidone. I never kept her on them for very long because she

would go downhill and get worse, so i would take her off them. I

think we tried 2 or 3 diff. times with those meds.

About a year after Dad's death, in 2001, I had to take over doing her

meds. I fill a box for each day. She was trying to do them but it

was taking her all day to do a couple of boxes and it was upsetting

to her and she finally said she couldn't do it. Also at this time,

she could not do the check book and didn't understand anything about

the money. And believe me there are no high finances involved...Just

a simple SS check and that's it....She also could no longer do her

recertification for her senior housing, I have to do it...she has no

clue.

On 7/18/02 she had a clinical neuropsychological evaluation done and

testing...extensive....

I won't go through the entire report but I will give you a few

comments they made...

Ms. P is able to retain information regarding important personal

events but she forgets details of conversations.She appears able to

follow conversations but occasionally has difficulty and gropes for

words.

Imaging studies from March 2002 revealed periventricular

hypodensities consistent with chronic microvascular infarctions.

Her Father and sister both passed with Alzheimer's.

This is the important part..

Evaluation findings indicate that Ms P is of average intellectual

abilites. In this context, she performed normally on tasks sensitive

to dementia severity, test of simple attention, sustained attention,

reading, and retention of new information. IN CONTRAST...deficits

were seen on tasks of processing speed, encoding of supra-span

material (i.e., learning new material that exceeds attention span

limitations) and word retrieval.

Findings reveal deficits in more than two neurcognitive domains which

is consistent with dementia. Her neuropsychological profile and

clinical history are compatible with ischemic vascular dementia.

A trial of Aricept was suggested and tried at that time with no luck.

Well, Imogene you are probably sorry you asked now.....lol

It has good months and bad months, but pretty much the same things

for years up until maybe a years ago when she started complaining

that her legs and muscles felt all stiff and she can't walk very

good. She has to hold on to me when we are out and she walks like

she is drunk. I put this together with LBD...The doctors say it's

lack of exercise...because of her lack of doing much. But her

muscles are strong when tessted...she does have a circulation problem

with her legs that we see a specialist for.

Also, she still sees bugs all the time...there are none...the other

night she said there was a baby on the arm of her chair...she doesn't

get scared and she will even say to me that I probably think she is

crazy and she knows that it's not there but that she sees it...I just

change the subject as long as she is comfortable and will go along.

I learned not to try to convince her that there are no bugs,

husbands, babies, cats, dogs, etc in the house...her personality has

also changed from being an angel on earth to this person that says

whatever comes to her mind and sometimes it's very hurtful...but, I

chalk it up to the LBD and being sick...She takes it all out on me

because I am the caregiver and my other two sisters that see her 1 a

week get all the glory and happiness she can muster up for them...

Anyway, that's it...I'm sure I answered all your questions and then

some.... :-)

Many many hugs Imogene.....

Carol Incog

>

> Carol, you need a good doctor!!!!! It is not you!

>

> Get another opinion with one that knows. If you are not sure about

doctors,

> then try a third. We have been around doctors many, many years, so

we can

> pretty well " read " them, but someone that hasn't may need to get

more than one

> or two opinions.

>

> When a doctor questions the need for you to see a Doctor for your

Mom's

> problems, I would suspect that doctor of being afraid of loosing a

patient, and

> credibility. I would suspect, period! That is twice now that she

has thrown

> objections in your path. Don't let her throw you. That is exactly

what she is

> trying to do. Most Doctors are glad for you to seek another

opinion. I

> wouldn't go back to her.

>

> Take your diary to your own Neurologist, not a referal, (our

referal was

> horrible. We found our own) and ask for a mini test, and give him

your diary.

> Don't suggest any ailment. Let him tell you.

>

> You have learned enough by now to know that an LBD patient is

lucid as you

> or me one minute and not so the next, or the next day. That is why

your Mom

> has lived alone for so long.

> What shape are her finances in? The ability to " keep the books " is

one thing

> that goes early on. Did she have hallucinations early on? Of

course you

> wouldn't know if she was alone. She may not have told you. Nor

that she was

> putting on " showtime " when you were around or on the phone. Has

her decline been

> gradual and steady, or up and down, so that you think she is

normal, and then

> the next time you turn around she isn't?

>

> Grandual steady decline usually means Alzheimer's with the first

thing to

> show being memory loss. LBD usually has almost intact memory. But,

they can't

> figure things out for themselves. They loose the ability to do

jobs or chores

> they have done all their lives. Cognitive problems is an LBD

hallmark.

>

> Again, ask the Neurologist or Geriatric/Psychiatrist (which we

have) to give

> only the mini test, and to use your notes. That should keep your

mother from

> a battery of all day testing that will wear her out.

>

> Is your Mom's doctor an accredited Neurologist or

Geriatric/Psychologist? Or

> is she just an MD? Don't go to her for mental problems if she

isn't one or

> the other beside an MD.

>

> What are some of your Mom's symptoms? My husband on my looking

back, has had

> problems since 1995. That is a long time, but his first sign was

not being

> able to work with figure back then.

>

> It took years for it to develop into full blown LBD. Now without a

shadow of

> a doubt I know he has LBD. But, you see how long it took for me to

even

> realize there was a problem? His first hallucination when he was

awake told me

> something was wrong, and also because he couldn't do jobs that he

had always

> done. He couldn't figure out how to do them. Does your Mom see

things? People

> or animals? Not necessarily scary, but just there.

>

> I'll let you alone for a while, but I so want to help if at all

possible,

> Imogene

>

> In a message dated 11/3/2006 6:01:47 PM Central Standard Time,

> carol.incognito@... writes:

>

> Dear Imogene,

> Well, I'm glad that you could finally give an answer that I can

> answer and that makes sense. If it is just for research, I " m sure

> most insurance companies or medicare will probably not pay for it.

> That makes sense.

>

> From everything you said, I guess the most important thing is to

find

> a good doctor that has knowledge of LBD and will more than likely

be

> able to make the DX jast as in the case of your Don. I will go

along

> with that and be satisfied. I don't even want to put my Mom

through

> such a test. I did not know it was intrusive with dye. I don't

want

> that.

>

> My Mom's Doctor sent me another email this afternoon after I told

her

> to get me the referral for the neurologist saying, " Are you sure

you

> really want to put her through going to see a neurologist?really

wan

> back and asked her why she sounds so against it and I am awaiting

her

> reply...

> I could go in and talk to the Doctor and have a consultation with

my

> diary on Mom and she could probably DX it right then...just as

most

> of us on site have done. Maybe it's me and I go into this denial

> mode. I think my biggest problem in accepting LBD 100% is that it

> has been 6+ years and she has problems, for sure, but she is still

> living alone and does not seem to have a lot of the severe problems

I

> read about on site. And it has not happened quickly. Am I just

> lucky or does she not have LBD? That is my dilemma!!!

>

> Well, thanks for your time Imogene...and I hope tonight will be

calm

> with Don.

> Thanks,

> Carol Incognito

>

> --- In _LBDcaregivers@LBDcaregiverLBD_

(mailto:LBDcaregivers )

> , Iward27663@, Iwa

> >

> > Maybe I need to do some more research. I have never heard of a

PET

> Scan

> > identifying a dementia. Thanks for your information, . I

> will certainly

> > look into this further. I sure wish I had known yesterday, and

> questioned our

> > Doctor.

> >

> > Well--- I just stopped and called him. He said that a PET scan

is

> used in

> > research study, but is not something used everyday, because all

the

> test

> > identify the illness, and the PET scan will not change the

> treatment. It is

> > injecting dye into the patient that binds to certain proteins.

So

> yes, it can

> > identify LBD, but as a clinical study in research. he stressed

it

> was in research.

> >

> > He said it is not necessary in identifying the dementia, because

> the Doctor

> > can do that. NO, I guess it's not necessary when you have an

> excellent doctor

> > as we have. We have never felt more secure than we do with our

> Doctor. The

> > first one we had was horrible, though.

> > Imogene

> >

> > In a message dated 11/3/2006 9:51:05 AM Central Standard Time,

> > jenniferlynnebrock@ jenniferly

> >

> > Carol,

>

November 3, 2006

carol.

there are other clues as well, as the many that imogene listed, now you must

remembver that each lbd patient is different, so there are many variations.

dads started with halluciations, unexplained falls, and also dropping of

things, like taking a plate out of the microwave and he would drop it. very

very sad, his right hand which he was right handed was the one that was effected

the most.

you may notice a shuffling gait, you may notice the fluctuating cognitivion,

and that can flip instantly. they are also great at showtime, showing no

symptoms at doctors or for company and then when the showtime is over it is like

a light switch and they are gone again.

i looked at all teh symptoms of the lbd and told the psych that i felt that dad

had that, esp wehn he reqcted adversely to some of teh problem meds, sinemet

esp.

the doctor then aggreed that dad had lbd.

good luck and hugs, sharon m

---- Iward27663@... wrote:

Carol, you need a good doctor!!!!! It is not you!

Get another opinion with one that knows. If you are not sure about doctors,

then try a third. We have been around doctors many, many years, so we can

pretty well " read " them, but someone that hasn't may need to get more than one

or two opinions.

When a doctor questions the need for you to see a Doctor for your Mom's

problems, I would suspect that doctor of being afraid of loosing a patient, and

credibility. I would suspect, period! That is twice now that she has thrown

objections in your path. Don't let her throw you. That is exactly what she is

trying to do. Most Doctors are glad for you to seek another opinion. I

wouldn't go back to her.

Take your diary to your own Neurologist, not a referal, (our referal was

horrible. We found our own) and ask for a mini test, and give him your diary.

Don't suggest any ailment. Let him tell you.

You have learned enough by now to know that an LBD patient is lucid as you

or me one minute and not so the next, or the next day. That is why your Mom

has lived alone for so long.

What shape are her finances in? The ability to " keep the books " is one thing

that goes early on. Did she have hallucinations early on? Of course you

wouldn't know if she was alone. She may not have told you. Nor that she was

putting on " showtime " when you were around or on the phone. Has her decline

been

gradual and steady, or up and down, so that you think she is normal, and then

the next time you turn around she isn't?

Grandual steady decline usually means Alzheimer's with the first thing to

show being memory loss. LBD usually has almost intact memory. But, they can't

figure things out for themselves. They loose the ability to do jobs or chores

they have done all their lives. Cognitive problems is an LBD hallmark.

Again, ask the Neurologist or Geriatric/Psychiatrist (which we have) to give

only the mini test, and to use your notes. That should keep your mother from

a battery of all day testing that will wear her out.

Is your Mom's doctor an accredited Neurologist or Geriatric/Psychologist? Or

is she just an MD? Don't go to her for mental problems if she isn't one or

the other beside an MD.

What are some of your Mom's symptoms? My husband on my looking back, has had

problems since 1995. That is a long time, but his first sign was not being

able to work with figure back then.

It took years for it to develop into full blown LBD. Now without a shadow of

a doubt I know he has LBD. But, you see how long it took for me to even

realize there was a problem? His first hallucination when he was awake told me

something was wrong, and also because he couldn't do jobs that he had always

done. He couldn't figure out how to do them. Does your Mom see things? People

or animals? Not necessarily scary, but just there.

I'll let you alone for a while, but I so want to help if at all possible,

Imogene

In a message dated 11/3/2006 6:01:47 PM Central Standard Time,

carol.incognito@... writes:

Dear Imogene,

Well, I'm glad that you could finally give an answer that I can

answer and that makes sense. If it is just for research, I " m sure

most insurance companies or medicare will probably not pay for it.

That makes sense.

From everything you said, I guess the most important thing is to find

a good doctor that has knowledge of LBD and will more than likely be

able to make the DX jast as in the case of your Don. I will go along

with that and be satisfied. I don't even want to put my Mom through

such a test. I did not know it was intrusive with dye. I don't want

that.

My Mom's Doctor sent me another email this afternoon after I told her

to get me the referral for the neurologist saying, " Are you sure you

really want to put her through going to see a neurologist?really wan

back and asked her why she sounds so against it and I am awaiting her

reply...

I could go in and talk to the Doctor and have a consultation with my

diary on Mom and she could probably DX it right then...just as most

of us on site have done. Maybe it's me and I go into this denial

mode. I think my biggest problem in accepting LBD 100% is that it

has been 6+ years and she has problems, for sure, but she is still

living alone and does not seem to have a lot of the severe problems I

read about on site. And it has not happened quickly. Am I just

lucky or does she not have LBD? That is my dilemma!!!

Well, thanks for your time Imogene...and I hope tonight will be calm

with Don.

Thanks,

Carol Incognito

--- In _LBDcaregivers@LBDcaregiverLBD_ (mailto:LBDcaregivers )

, Iward27663@., Iwa

>

> Maybe I need to do some more research. I have never heard of a PET

Scan

> identifying a dementia. Thanks for your information, . I

will certainly

> look into this further. I sure wish I had known yesterday, and

questioned our

> Doctor.

>

> Well--- I just stopped and called him. He said that a PET scan is

used in

> research study, but is not something used everyday, because all the

test

> identify the illness, and the PET scan will not change the

treatment. It is

> injecting dye into the patient that binds to certain proteins. So

yes, it can

> identify LBD, but as a clinical study in research. he stressed it

was in research.

>

> He said it is not necessary in identifying the dementia, because

the Doctor

> can do that. NO, I guess it's not necessary when you have an

excellent doctor

> as we have. We have never felt more secure than we do with our

Doctor. The

> first one we had was horrible, though.

> Imogene

>

> In a message dated 11/3/2006 9:51:05 AM Central Standard Time,

> jenniferlynnebrock@ jenniferly

>

> Carol,

November 3, 2006

Hi Sharon,

Thanks for the help. Mom doesn't shuffle at all...she just sort of

drags very unsteadily. As I explained she walks like she is drunk.

She has never had a fall...except for trying to shoo a cat away from

under the tv she was watching and she fell out of her chair onto her

leg...that wasn't really a fall though..it was a hallucination, there

was no cat. And her hands are very steady...so, the Parkinson type

of symptoms don't seem so great, except she complains of weakness in

her legs, she even says, my muscles feel like they are dead and she

gets lots of charly horses in her legs and groin...anyone ever hear

of that??? She gets them in her hands too...they will just lock up

and she can't move them...it happens quite frequently...is that what

freezing is??? I am trying to learn so much, my head sometimes goes

in a whirlwind.

Well, thanks for your help...hope you have a good weekend Sharon,

My best,

Carol Incog

>

> Carol, you need a good doctor!!!!! It is not you!

>

> Get another opinion with one that knows. If you are not sure about

doctors,

> then try a third. We have been around doctors many, many years, so

we can

> pretty well " read " them, but someone that hasn't may need to get

more than one

> or two opinions.

>

> When a doctor questions the need for you to see a Doctor for your

Mom's

> problems, I would suspect that doctor of being afraid of loosing a

patient, and

> credibility. I would suspect, period! That is twice now that she

has thrown

> objections in your path. Don't let her throw you. That is exactly

what she is

> trying to do. Most Doctors are glad for you to seek another

opinion. I

> wouldn't go back to her.

>

> Take your diary to your own Neurologist, not a referal, (our

referal was

> horrible. We found our own) and ask for a mini test, and give him

your diary.

> Don't suggest any ailment. Let him tell you.

>

> You have learned enough by now to know that an LBD patient is

lucid as you

> or me one minute and not so the next, or the next day. That is why

your Mom

> has lived alone for so long.

> What shape are her finances in? The ability to " keep the books " is

one thing

> that goes early on. Did she have hallucinations early on? Of

course you

> wouldn't know if she was alone. She may not have told you. Nor

that she was

> putting on " showtime " when you were around or on the phone. Has

her decline been

> gradual and steady, or up and down, so that you think she is

normal, and then

> the next time you turn around she isn't?

>

> Grandual steady decline usually means Alzheimer's with the first

thing to

> show being memory loss. LBD usually has almost intact memory. But,

they can't

> figure things out for themselves. They loose the ability to do

jobs or chores

> they have done all their lives. Cognitive problems is an LBD

hallmark.

>

> Again, ask the Neurologist or Geriatric/Psychiatrist (which we

have) to give

> only the mini test, and to use your notes. That should keep your

mother from

> a battery of all day testing that will wear her out.

>

> Is your Mom's doctor an accredited Neurologist or

Geriatric/Psychologist? Or

> is she just an MD? Don't go to her for mental problems if she

isn't one or

> the other beside an MD.

>

> What are some of your Mom's symptoms? My husband on my looking

back, has had

> problems since 1995. That is a long time, but his first sign was

not being

> able to work with figure back then.

>

> It took years for it to develop into full blown LBD. Now without a

shadow of

> a doubt I know he has LBD. But, you see how long it took for me to

even

> realize there was a problem? His first hallucination when he was

awake told me

> something was wrong, and also because he couldn't do jobs that he

had always

> done. He couldn't figure out how to do them. Does your Mom see

things? People

> or animals? Not necessarily scary, but just there.

>

> I'll let you alone for a while, but I so want to help if at all

possible,

> Imogene

>

> In a message dated 11/3/2006 6:01:47 PM Central Standard Time,

> carol.incognito@... writes:

>

> Dear Imogene,

> Well, I'm glad that you could finally give an answer that I can

> answer and that makes sense. If it is just for research, I " m sure

> most insurance companies or medicare will probably not pay for it.

> That makes sense.

>

> From everything you said, I guess the most important thing is to

find

> a good doctor that has knowledge of LBD and will more than likely

be

> able to make the DX jast as in the case of your Don. I will go

along

> with that and be satisfied. I don't even want to put my Mom

through

> such a test. I did not know it was intrusive with dye. I don't

want

> that.

>

> My Mom's Doctor sent me another email this afternoon after I told

her

> to get me the referral for the neurologist saying, " Are you sure

you

> really want to put her through going to see a neurologist?really

wan

> back and asked her why she sounds so against it and I am awaiting

her

> reply...

> I could go in and talk to the Doctor and have a consultation with

my

> diary on Mom and she could probably DX it right then...just as

most

> of us on site have done. Maybe it's me and I go into this denial

> mode. I think my biggest problem in accepting LBD 100% is that it

> has been 6+ years and she has problems, for sure, but she is still

> living alone and does not seem to have a lot of the severe problems

I

> read about on site. And it has not happened quickly. Am I just

> lucky or does she not have LBD? That is my dilemma!!!

>

> Well, thanks for your time Imogene...and I hope tonight will be

calm

> with Don.

> Thanks,

> Carol Incognito

>

> --- In _LBDcaregivers@LBDcaregiverLBD_

(mailto:LBDcaregivers )

> , Iward27663@, Iwa

> >

> > Maybe I need to do some more research. I have never heard of a

PET

> Scan

> > identifying a dementia. Thanks for your information, . I

> will certainly

> > look into this further. I sure wish I had known yesterday, and

> questioned our

> > Doctor.

> >

> > Well--- I just stopped and called him. He said that a PET scan

is

> used in

> > research study, but is not something used everyday, because all

the

> test

> > identify the illness, and the PET scan will not change the

> treatment. It is

> > injecting dye into the patient that binds to certain proteins.

So

> yes, it can

> > identify LBD, but as a clinical study in research. he stressed

it

> was in research.

> >

> > He said it is not necessary in identifying the dementia, because

> the Doctor

> > can do that. NO, I guess it's not necessary when you have an

> excellent doctor

> > as we have. We have never felt more secure than we do with our

> Doctor. The

> > first one we had was horrible, though.

> > Imogene

> >

> > In a message dated 11/3/2006 9:51:05 AM Central Standard Time,

> > jenniferlynnebrock@ jenniferly

> >

> > Carol,

>

November 3, 2006

hi carol

the dragging of the foot is the shuffle, although it usually is both feet but my

dad was promoiniently onesided right sided weak, he couldnt pick up that foot

so he dragged it . he was uhable to grazp a glass or carry a plate etc.

someone at one time suggested a brand new bar of soap to be put betweeh the

fitted sheet and hte mattress to hlep ease the restless legs synodrome, teh

charley horses etc. we tried it and it seems to work, i used lavendar scented

soap as lavendar is a calming scent. it seems to work for donnie adn my dad.

i alos swear by the snuggle and downy fabric softeners, i used the lavendar

scent for bed clothes and towels and pajamas etc. adn the citric sent for

clothes , teh citrus seemed to keep dad a little perky and adn the lavendar was

calming as well. the fabric softeners make costa litlle more but i think they

are with it, and if any of you are dealing with wet adn dirty clothes from

unable to make it to teh bathroom, i swear by oxyclean deteregent treatment. i

have a urostomy so my clothes and bed sheets even tully pick up the urine sent

from my urostomy but using one capful of oxyclean with one capful of all free

and then one capful of lavendar/ctirus rinse, makes my clotehs smell fressh and

clean everytime, hugs sharon m

---- " carol.incognito " wrote: