Re: Re: Guess I missed something

[Guest guest]

Sorry, I really missed something - when did the issue of breaking up the

group arise? I would miss everybody here and would really hate to choose

between you.

Of COURSE there are different issues for different cases, that's what makes

our contributions special.

c

At 23:53 5/13/02 -0000, you wrote:

> If you want to break up the groups, try breaking them into one group

> for the sympathy and kudos E-Mails and the other for the substance E-

> I have a terrible time trying to catch up when I0 have to

> " " " "

> There has been a lot of valuable information to show up in

> this program....such as right now I am trying to go back and find the

> They are talking about

> Is it OK for Lewy Body

> People?????

>

> Joanne

>

>

>

> " " <> wrote:

>> you are

> going separate the group.. where does daughter in law fit in..

> thanks . lindad

>> Guess I missed something

>>

>>

>> Is there a discussion about breaking the group up into separate

>> groups for spouses and children?

>>

>> I would have mixed feelings about that but I can certainly see

> that

>> there are different issues for wives than for sons and daughters.

> If

>> the focus of a caregivers' group is on the caregivers' feelings

> and

>> concerns then 2 separate groups might be most appropriate.

>>

>>

>>

>>

>>

[Guest guest]

I totally agree that the group should stay together. The larger the group the

greater the resources we have to draw on. I live in Rhode Island and have just

recently found a neurologist that knows about LBD and can't wait for my mom's

first appointment. I got to hear him speak at a new nursing home that we are

going to have my mom move to as the other she is in is very small and

inadequate. The new one is also very progressive in their treatment of patients

and specializes in Alzheimers and related diseases. I only had to describe my

moms symptoms to this doctor for him to agree that my mom most likely has LBD.

Others have never taken me seriously or dismissed it due to the fact that my mom

does not have Parkinsons disease. One doctor actually diagnosed her with

Skitzophrenia which in my moms case is totally impossible and he was the head of

the Geriatric Psychiatric ward in a major hospital. There are only two ways you

can have skitzophrenia(sp) one when they develope it between the ages of 20 to

30 years old most common and the other if someone has a MAJOR brain trauma. The

hallucinations are also different than LBD as they are more audio than visual

especially in the beginning. Whereas LBD as we well know is far more visual.

Since my mom is 78 and has never had a major brain trauma she couldn't have

skitzophrenia but since the doctor was more familia with that disease that's

what he diagnosed her with. He Eventually asked my aunt about brain traumas

that my mom may have had and when she told him she has not had one and we were

sure of it. He did admit that she couldn't have Skitzophrenia. He didn't

however change the diagnoses or look into something else further. So needless

to say I am thrilled with this new doctor and he has even mentioned the

possibility of starting a caregiver support group in my state. I am seriously

thinking about this. Also one other person at the talk has a LO that has LBD

and she is interested in information and this group. If anyone is in the RI

area and needs a good place to take their LO for any type of mental disease I

would highly recommend Hospital as this is all they do and they do lots

of research so they are always learning about the new techniques and

medications. The neurologists name is Dr. Sulloway(sp).

[Guest guest]

One doctor actually diagnosed her with Skitzophrenia which in my moms case is

totally impossible and he was the head of the Geriatric Psychiatric ward in a

major hospital. There are only two ways you can have skitzophrenia(sp) one when

they develope it between the ages of 20 to 30 years old most common and the

other if someone has a MAJOR brain trauma.

I think you are a little confused about the facts of schizophrenia. Since my

son is

schizophrenic, I hate seeing misinformation about the disease perpetuated. This

is not

the proper venue for a discussion on this disease, so I will not get into the

details.

There are definite and clear differences, but they are not the ones you quoted.

Mai-Liis

[Guest guest]

Sorry this is information I got from a medical website. If it is not correct

then they are to blame. Even the doctor that diagnosed my mom with it agreed

that this was not possible after he bothered asking. My best friends Aunt has

Skitzophrenia and they confirmed the Audio vs. visual hallucination differences

and said that my mom symptoms were very different from her aunts. I mentioned

this incase someone else was experiencing similar mis-diagnosis problems.

[Guest guest]

Well audio is more unusual but the Parkinsons symptoms don't go along with

Skitzophrenia and Skitzophrenia is a much more well known disease in the medical

industry so it is unlikely that they would have diagnosed your LO if they had

Skitzophrenia. After all why not go with the better known illness that they

don't need to do so much research on. Did your LO have a major brain trauma

such as a brain injury or major stroke? If not since I would imagine they are

not between 20 and 30 years old that pretty much rules out Skitzophrenia. Since

your LO has been diagnosed by two Neurologist I would feel pretty secure with

their diagnosis and LBD does have other symptoms such as the runny nose and the

Parkinsonlike symptoms as well as spacial orientation problems. Its good that

you are on your toes though.

[Guest guest]

Elaine, my husband who has LBD, and my son who has schizophrenia since childhood

(no

head trauma), have both had visual AND aural hallucinations. It pays to be very

skeptical of

information on the internet if you are not familiar of the credentials of the

writer. As far as

schizophrenia is concerned, there is a very good diagnostic tree in the DMS

IV....which is

followed by most practitioners....and it is not possible to shove anyone into

this diagnosis

who does not belong there. It is not a lay person's manual, and again....I

would encourage

everyone to research, but be careful of the source....and try to avoid jumping

to conclusions.

Mai-Liis

" One doctor actually diagnosed her with Skitzophrenia which in my

moms case is totally impossible ... The hallucinations are also

different than LBD as they are more audio than visual especially in

the beginning. Whereas LBD as we well know is far more visual. "

This worries me, since in my mom's case the hallucinations started

out all audio and she did go on to have visual ones, audio ones have

predominated. But she definately has the Parkinson's part of this,

and I wouldn't think that would be the case with Schizophrenia. I

hate to think my mom could be misdianosed; it seems highly unlikely

since she was diagnosed by one of the two top nuerologists in the

region, but still I worry.

Elaine

[Guest guest]

To get Skitzophrenia when you are older requires a major head trauma not when it

is developed at a younger age. Maybe that was misunderstood. Only when older

people develope it does a head trauma need to be involved. Normally someone

developes this disease between the ages of 20 to 30 years of age and that does

not have a head trauma associated with it.

[Guest guest]

But she does lean forward or tilt

sideways. She is complaining of a runny nose all the time. She drools

all the time. She sees people who are not there and she worries about

people stealing her money (I don't give her any money to steal) or

her chocolates (which probably is true).

this sounds like my father in law.. lindad

Re: Guess I missed something

I think that it is very common for psychiatrist to see an older

person being very delusional and insist that they must have been like

this when they were younger and try to fit the condition to more

common labels.

My mother was always high anxiety in general but she didn't have

hallucinations and she wasn't paranoid. I had to write up the history

of all the current dementia type problems based on what my sisters

and I had observed. I started with the first Parkinson's tremor and

detailed everything I could remember or extract from my sisters. It

all began so subtley that it was hard to write it up as a

chronological progression. But it definitly didn't start in her youth

AND it didn't start with the complete psychotic break in the hospital

after they added antibiotics to her Parkinson's meds. It was a much

more subtle shift than that.

It is possible that my mother does not have LBD -- we won't know

until there is an autopsy years from now -- maybe her brain was

damaged by the Parkinson's meds. But she does lean forward or tilt

sideways. She is complaining of a runny nose all the time. She drools

all the time. She sees people who are not there and she worries about

people stealing her money (I don't give her any money to steal) or

her chocolates (which probably is true).

I'm not sure it really matters what label you put on it. Dementia is

only a socially more acceptable label for organic brain damage or

psychosis. She is super sensative to meds and so that is important to

know. I'm not sure that anything else matters.

> Elaine, my husband who has LBD, and my son who has schizophrenia

since childhood (no

> head trauma), have both had visual AND aural hallucinations. It

pays to be very skeptical of

> information on the internet if you are not familiar of the

credentials of the writer. As far as

> schizophrenia is concerned, there is a very good diagnostic tree in

the DMS IV....which is

> followed by most practitioners....and it is not possible to shove

anyone into this diagnosis

> who does not belong there. It is not a lay person's manual, and

again....I would encourage

> everyone to research, but be careful of the source....and try to

avoid jumping to conclusions.

>

> Mai-Liis

>

>

> " One doctor actually diagnosed her with Skitzophrenia which in my

> moms case is totally impossible ... The hallucinations are also

> different than LBD as they are more audio than visual especially

in

> the beginning. Whereas LBD as we well know is far more visual. "

>

> This worries me, since in my mom's case the hallucinations

started

> out all audio and she did go on to have visual ones, audio ones

have

> predominated. But she definately has the Parkinson's part of

this,

> and I wouldn't think that would be the case with Schizophrenia. I

> hate to think my mom could be misdianosed; it seems highly

unlikely

> since she was diagnosed by one of the two top nuerologists in the

> region, but still I worry.

>

> Elaine

>

>

>

>

[Guest guest]

My mom takes Risperdol for hallucinations and it helps her sleep a little

better.............Shirley

>

>Reply-To: LBDcaregivers

>To: LBDcaregivers

>Subject: Re: Guess I missed something

>Date: Mon, 13 May 2002 23:53:43 -0000

>

>If you want to break up the groups, try breaking them into one group

>for the sympathy and kudos E-Mails and the other for the substance E-

>Mails. I have a terrible time trying to catch up when I0 have to

>keep reading those little " stick with it " ..... " you have my sympathy "

>notes. There has been a lot of valuable information to show up in

>this program....such as right now I am trying to go back and find the

>notes I remember reading on respirdal. They are talking about

>placing my husband on this med at the NH. Is it OK for Lewy Body

>People?????

>

>Joanne

>

>

>

>

> > i don't want to lose this list . so please tell me if you are

>going separate the group.. where does daughter in law fit in..

>thanks . lindad

> > Guess I missed something

> >

> >

> > Is there a discussion about breaking the group up into separate

> > groups for spouses and children?

> >

> > I would have mixed feelings about that but I can certainly see

>that

> > there are different issues for wives than for sons and daughters.

>If

> > the focus of a caregivers' group is on the caregivers' feelings

>and

> > concerns then 2 separate groups might be most appropriate.

> >

> >

> >

> >

> >