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I want to give a great thanks to you for all the information you

have provided, with a special thanks to Jim W. on the LBD/med files.

In my unhappiness and disbelief with my mom's situation and how it

has spiraled, I can say now 100% she declined because her physician

gave her RISPERDAL! Her whole history has just made no sense to us

and the more I'm reading the more I'm sure of this.

No matter how ignorant we were, we had told her caregivers over and

over to watch the meds they gave her because she has always been

sensitive to them. Now bear in mind we did not have the LBD

diagnosis either. We thought we were dealing with Parkinson's! But

once she became " catatonic " , sleeping almost round the clock, we all

become shell shocked. We had no idea what was happening. By early

July we demanded that all meds be stopped. And thank God for that

move, because we're sure we would have lost her. By this time she

was in a NH but as a rehab setting. This is when her bedsore

situation began too, along with the fact she couldn't be aroused to

get nourishment. During a PT session in her bed, her BP dropped,

sending her to the hospital again. They then discovered the Stage

IV bedsore. So I guess I'm writing again because your information

has greatly helped to show how this horrible situation began, became

even more complicated by the series of other incidents, that my

beautiful mother never had a chance!

I also saw Benadryl on there. My mother was taking that on and off

too because we thought she had allegeries. She had to carry tissues

with her constantly but this never seemed to stop the symptoms.

Only wish we knew then what we know now, so we could have written

down what may have happened to her mentally during that time.

So for now, Mom is on the feeding tube and had her GP know what he

knows now I'm sure this would not have been done. But being in

another NH facility, mom has " another GP " now who started giving her

Reminyl on 10/7, 4mg 2x daily thru her Gtube. We did not see to much

of a change but 2 weeks ago he increased it and some family members

and staff members are saying she is talking so much more that we can

only hope this will help her.

But at this point, she has been bedridden since the end of June, on

the feeding tube since the end of July, and if she is able to stay

awake and be aware and carry on conversations again, she will also

be aware of her situation! She has already told her granddaughter

during a great visit not to visit her again because she doesn't want

her to see her like this! That would be my mother! So now our fears

are not of losing her but of how devastated she will be of her

situation.

I for one am telling everyone in my family not to take any kind of

neuroleptic drugs and Bendryl. Until the medical profession can tell

us this is not hereditary, we should not take any changes! There

are other alternative meds that can be used. Of course this will be

a long time in coming, won't it, since the majority of health care

professionals don't even know about LBD!

As someone in one post mentioned and I laughed and agree - I'm going

to eat anything and everything so my body will give out before my

mind knows what is happening.

This is a horrible disease (what an understatement). So many of you

have been above and beyond helpful to us and each other. If anything

we say to one other can help another family, I pray that it does. I

has helped me!

Thank you with all my heart -- all members of this group!

Elaine

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  • 1 month later...

, all drugs have a brand name and a generic name,crazy i know.

Olanzapine is zyprexa,going to work now,speak to you later.

amanda.x

Drugs

Just been talking to dads doctor.

She was talking about Olanzapine. I'm quietly trying not to sound thick,

thinking, 'is that Seroquel or is Seroquel actually Quetiapine???'

I've worked it out now but what I want to know is this...

Why do drugs have to have at least 3 different names? And why do they have

to have such stupid names? And why can't I remember how to spell them?

Why can't the doctor say 'your dads on 50mg of Trevor and 100mg of Kylie'?

In fact why can't I be on 100mg of Kylie. Sounds nice.... Anybody know where

I can buy some?

Welcome to LBDcaregivers.

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

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You know I don't think he's even on Olanzapine! Thats what confused me.

And I couldn't even remember the word 'Aricept'. Blimey, what's happening to

me?

Memory like a.....

Er..... Umm......

What do you call those things with little holes in? Use them in the

kitchen... For cleaning stuff under that other thing that water comes out

of....

Re: Drugs

, all drugs have a brand name and a generic name,crazy i know.

Olanzapine is zyprexa,going to work now,speak to you later.

amanda.x

Drugs

Just been talking to dads doctor.

She was talking about Olanzapine. I'm quietly trying not to sound

thick,

thinking, 'is that Seroquel or is Seroquel actually Quetiapine???'

I've worked it out now but what I want to know is this...

Why do drugs have to have at least 3 different names? And why do they

have

to have such stupid names? And why can't I remember how to spell them?

Why can't the doctor say 'your dads on 50mg of Trevor and 100mg of

Kylie'?

In fact why can't I be on 100mg of Kylie. Sounds nice.... Anybody know

where

I can buy some?

Welcome to LBDcaregivers.

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

--

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,do you think you could get Clooney's(of the ) kind?

.x

Drugs

>

>

> Just been talking to dads doctor.

> She was talking about Olanzapine. I'm quietly trying not to sound

>thick,

> thinking, 'is that Seroquel or is Seroquel actually Quetiapine???'

>

> I've worked it out now but what I want to know is this...

>

> Why do drugs have to have at least 3 different names? And why do

they

>have

> to have such stupid names? And why can't I remember how to spell

them?

> Why can't the doctor say 'your dads on 50mg of Trevor and 100mg of

>Kylie'?

> In fact why can't I be on 100mg of Kylie. Sounds nice.... Anybody

know

>where

> I can buy some?

>

>

>

>

>

> Welcome to LBDcaregivers.

>

>

>

>

>

> -------------------------------------------------------------------------

-

>--

>

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Now let me see .......most certainly a large dose of Brosnan, another

of Gibson, a good dose of Peck and half a tab of Pitt. That should get me

through a day or two! Of course, I always retain the right to switch to

other pills once these are no longer effective! :)

Courage

Re: Drugs

> >

> >

> > , all drugs have a brand name and a generic name,crazy i know.

> > Olanzapine is zyprexa,going to work now,speak to you later.

> > amanda.x

> > Drugs

> >

> >

> > Just been talking to dads doctor.

> > She was talking about Olanzapine. I'm quietly trying not to sound

> >thick,

> > thinking, 'is that Seroquel or is Seroquel actually Quetiapine???'

> >

> > I've worked it out now but what I want to know is this...

> >

> > Why do drugs have to have at least 3 different names? And why do

>they

> >have

> > to have such stupid names? And why can't I remember how to spell

> them?

> > Why can't the doctor say 'your dads on 50mg of Trevor and 100mg of

> >Kylie'?

> > In fact why can't I be on 100mg of Kylie. Sounds nice.... Anybody

> know

> >where

> > I can buy some?

> >

> >

> >

> >

> >

> > Welcome to LBDcaregivers.

> >

> >

> >

> >

> >

>

>> ------------------------------------------------------------------------

-

> -

> >--

> >

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