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Re: Can her med list determine what Phase of LBD she is in?

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HI L.H.

You mentioned that your mom's blood was checked but did they check her for a

UTI?

Just off the top of my head I am wondering if it wouldn't be better off to give

your mom 25mgs of seroquel in the morning and 25 in the afternoon with the full

dose at bedtime (she may not need that much if she evens out). I know this

stage when they fixate on something can be very trying on the nerves (mom wanted

to give everyone tickets - she was never a police officer) but hopefully it will

end soon. I know its hard but try to hand in there. BTW, what is Alprazolam?

Courage

Can her med list determine what Phase of LBD she is

in?

I was wondering if you can tell what phase of LBD a person is in

according to their medications?

I am familar with your Phase list. I'm certain she has been in Mid

Phase for the last 3 yrs. A few weeks back, she suddenly started

falling and confusion multiplied, then the violent attacking

outbursts. It was as if, in a 2 wk period, she just started going

downhill before our eyes. Even serious constipation became a problem.

And her brain refused to shut down for sleep.

I put her in hospital on a Saturday. She was attacking the

hospital staff cause they were trying to rape her, poison her food,

etc.

They ran EVERY POSSIBLE TEST!!! NOTHING MEDICAL FOUND!!! They searched

hard trying to find a reason.

Medicare kicked her out that Tuesday.They did do a med increase of

her Seroquel & Namenda. Hospital doctor thinks her Lexapro should

also be increased, but didn't want to do 3 changes. I do have a

recheck appt scheduled with her psychiatrist. (all 3 of her doctors

were on vacation when this happened- talk about bad timing)

Granted, she's only been home about 2 wks, but I sure can see a

difference in her. The violence and anger is gone, THANK GOD!!! but

the confusion is MUCH worse. so I rechecked your Phase list and this

still puts her in mid phase.

Morning... She is about 5'4 and 130 lbs

Aricept 10MG

Lexapro 10MG

Namenda 10MG

Alprazolam 0.25MG

Requip 0.5MG

Carbidopa/Levodopa 10/100

Stool softener Senna S

Seroquel 50MG

Noon...

Requip 0.5MG

Carbidopa/Levodopa 10/100

Stool Softener

Aspirin 81

Supper...

Requip 0.5MG

Carbidopa/Levodopa 10/100

Namenda 10MG

Alprazolam 0.25MG

Bed...

Seroquel 200MG

Her seroquel used to be 150 at bedtime ONLY. so they increased it to

200 at bedtime plus added 50 to morning, yet the hallucinations are

still here. We have troublemaking kids running all over the house.

Plus she sees numbers on everything. There are numbers on her chair,

book shelves, table, etc.

All these numbers have to do with her batches (her office job she

used to have) she is soooo upset not knowing what or how to do these

batches, where to put these batches,etc. She is asking me for help

with her batches EVERY 5 MINUTES!

I haven't been 'me' since she's been home. I'm the 'other one' and

this hasn't been our house since we've been home. I'm familar with

all these symptoms... BUT NOT AFTER A MED INCREASE!!!! They

increased her morning Namenda to 10, used to be 5.

Everyone was sooo convinced she had a mini stroke, yet nothing found.

No explanation for a sudden decline. No concussion. Blood work was

excellent, etc

If you are comfortable, could you direct your comments to my Yahoo

email. I have problems manuevering my way through this site. That's

why I don't visit here often. I would love to visit here more often,

but just never got the hang of it.

Any and all comments would be GREATLY appreciated.

AGAIN... does this med list offer hints at what phase she is in?

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L.H.

You might discuss with her physician(s) suspending the Requip. The dopamine

agonists (such as Requip and Mirapex) are notorious for prompting confusion

as well as hallucinations and/or delusions and are generally not used when

dementia has been diagnosed. Without the Requip, she might not need as much

Seroquel. You are wise to make medication changes slowly and to change only

one thing at a time.

My father (then age 83), who also takes Sinemet, suffered disturbing

delusions, serious double vision and ankle swelling during a trial of Requip

and,

later, Mirapex. The problems all vanished once he stopped taking the dopamine

agonists. The delusions have returned from time to time, but usually are

mild and much less frequent.

Best,

KB

In a message dated 3/17/2008 12:17:38 A.M. Eastern Daylight Time,

gaat@... writes:

HI L.H.

You mentioned that your mom's blood was checked but did they check her for a

UTI?

Just off the top of my head I am wondering if it wouldn't be better off to

give your mom 25mgs of seroquel in the morning and 25 in the afternoon with

the full dose at bedtime (she may not need that much if she evens out). I know

this stage when they fixate on something can be very trying on the nerves

(mom wanted to give everyone tickets - she was never a police officer) but

hopefully it will end soon. I know its hard but try to hand in there. BTW, what

is

Alprazolam?

Courage

----- Original Message -----

From: L . H.

To: _LBDcaregivers@LBDcaregiverLBD_ (mailto:LBDcaregivers )

Sent: Sunday, March 16, 2008 11:59 AM

Subject: Can her med list determine what Phase of LBD she is

in?

I was wondering if you can tell what phase of LBD a person is in

according to their medications?

I am familar with your Phase list. I'm certain she has been in Mid

Phase for the last 3 yrs. A few weeks back, she suddenly started

falling and confusion multiplied, then the violent attacking

outbursts. It was as if, in a 2 wk period, she just started going

downhill before our eyes. Even serious constipation became a problem.

And her brain refused to shut down for sleep.

I put her in hospital on a Saturday. She was attacking the

hospital staff cause they were trying to rape her, poison her food,

etc.

They ran EVERY POSSIBLE TEST!!! NOTHING MEDICAL FOUND!!! They searched

hard trying to find a reason.

Medicare kicked her out that Tuesday.They did do a med increase of

her Seroquel & Namenda. Hospital doctor thinks her Lexapro should

also be increased, but didn't want to do 3 changes. I do have a

recheck appt scheduled with her psychiatrist. (all 3 of her doctors

were on vacation when this happened- talk about bad timing)

Granted, she's only been home about 2 wks, but I sure can see a

difference in her. The violence and anger is gone, THANK GOD!!! but

the confusion is MUCH worse. so I rechecked your Phase list and this

still puts her in mid phase.

Morning... She is about 5'4 and 130 lbs

Aricept 10MG

Lexapro 10MG

Namenda 10MG

Alprazolam 0.25MG

Requip 0.5MG

Carbidopa/Levodopa 10/100

Stool softener Senna S

Seroquel 50MG

Noon...

Requip 0.5MG

Carbidopa/Levodopa 10/100

Stool Softener

Aspirin 81

Supper...

Requip 0.5MG

Carbidopa/Levodopa 10/100

Namenda 10MG

Alprazolam 0.25MG

Bed...

Seroquel 200MG

Her seroquel used to be 150 at bedtime ONLY. so they increased it to

200 at bedtime plus added 50 to morning, yet the hallucinations are

still here. We have troublemaking kids running all over the house.

Plus she sees numbers on everything. There are numbers on her chair,

book shelves, table, etc.

All these numbers have to do with her batches (her office job she

used to have) she is soooo upset not knowing what or how to do these

batches, where to put these batches,etc. She is asking me for help

with her batches EVERY 5 MINUTES!

I haven't been 'me' since she's been home. I'm the 'other one' and

this hasn't been our house since we've been home. I'm familar with

all these symptoms... BUT NOT AFTER A MED INCREASE!!!! They

increased her morning Namenda to 10, used to be 5.

Everyone was sooo convinced she had a mini stroke, yet nothing found.

No explanation for a sudden decline. No concussion. Blood work was

excellent, etc

If you are comfortable, could you direct your comments to my Yahoo

email. I have problems manuevering my way through this site. That's

why I don't visit here often. I would love to visit here more often,

but just never got the hang of it.

Any and all comments would be GREATLY appreciated.

AGAIN... does this med list offer hints at what phase she is in?

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alzaprom is generic for xanax

Can her med list determine what Phase of LBD she is

in?

I was wondering if you can tell what phase of LBD a person is in

according to their medications?

I am familar with your Phase list. I'm certain she has been in Mid

Phase for the last 3 yrs. A few weeks back, she suddenly started

falling and confusion multiplied, then the violent attacking

outbursts. It was as if, in a 2 wk period, she just started going

downhill before our eyes. Even serious constipation became a problem.

And her brain refused to shut down for sleep.

I put her in hospital on a Saturday. She was attacking the

hospital staff cause they were trying to rape her, poison her food,

etc.

They ran EVERY POSSIBLE TEST!!! NOTHING MEDICAL FOUND!!! They searched

hard trying to find a reason.

Medicare kicked her out that Tuesday.They did do a med increase of

her Seroquel & Namenda. Hospital doctor thinks her Lexapro should

also be increased, but didn't want to do 3 changes. I do have a

recheck appt scheduled with her psychiatrist. (all 3 of her doctors

were on vacation when this happened- talk about bad timing)

Granted, she's only been home about 2 wks, but I sure can see a

difference in her. The violence and anger is gone, THANK GOD!!! but

the confusion is MUCH worse. so I rechecked your Phase list and this

still puts her in mid phase.

Morning... She is about 5'4 and 130 lbs

Aricept 10MG

Lexapro 10MG

Namenda 10MG

Alprazolam 0.25MG

Requip 0.5MG

Carbidopa/Levodopa 10/100

Stool softener Senna S

Seroquel 50MG

Noon...

Requip 0.5MG

Carbidopa/Levodopa 10/100

Stool Softener

Aspirin 81

Supper...

Requip 0.5MG

Carbidopa/Levodopa 10/100

Namenda 10MG

Alprazolam 0.25MG

Bed...

Seroquel 200MG

Her seroquel used to be 150 at bedtime ONLY. so they increased it to

200 at bedtime plus added 50 to morning, yet the hallucinations are

still here. We have troublemaking kids running all over the house.

Plus she sees numbers on everything. There are numbers on her chair,

book shelves, table, etc.

All these numbers have to do with her batches (her office job she

used to have) she is soooo upset not knowing what or how to do these

batches, where to put these batches,etc. She is asking me for help

with her batches EVERY 5 MINUTES!

I haven't been 'me' since she's been home. I'm the 'other one' and

this hasn't been our house since we've been home. I'm familar with

all these symptoms... BUT NOT AFTER A MED INCREASE!!!! They

increased her morning Namenda to 10, used to be 5.

Everyone was sooo convinced she had a mini stroke, yet nothing found.

No explanation for a sudden decline. No concussion. Blood work was

excellent, etc

If you are comfortable, could you direct your comments to my Yahoo

email. I have problems manuevering my way through this site. That's

why I don't visit here often. I would love to visit here more often,

but just never got the hang of it.

Any and all comments would be GREATLY appreciated.

AGAIN... does this med list offer hints at what phase she is in?

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<snip> alzaprom is generic for xanax <snip>

I'd be careful w/ that med then... Since it's a form of

benzodiazepine... Read here:

Dementia With Lewy Bodies: A Review Of Clinical

Benzodiazepines may negatively affect cognition and produce sedation,

paradoxic agitation and increased risk of falls in the elderly

http://tinyurl.com/yq5hcq

Why such strong feelings about benzos?

Message by

http://health.groups.yahoo.com/group/LBDcaregivers/message/61849

Hazardous Benzodiazepine Regimens in the Elderly: Effects of Half-

Life, Dosage, and Duration on Risk of Hip Fracture

June 2001 - Even at modest doses, including some low doses currently

advocated in prescribing guidelines for older patients, treatment

with benzodiazepines appears to increase the risk of hip fracture.

Patients appear to be particularly vulnerable immediately after

initiating therapy and after more than 1 month of continuous use.

Benzodiazepines with shorter half-lives appear to be no safer than

longer half-life agents. Clinicians should be aware of these risks

and weigh them against potential benefits when prescribing for

elderly patients.

http://ajp.psychiatryonline.org/cgi/content/full/158/6/892

> Can her med list determine what Phase of

LBD she is in?

>

> I was wondering if you can tell what phase of LBD a person is in

> according to their medications?

>

> I am familar with your Phase list. I'm certain she has been in Mid

> Phase for the last 3 yrs. A few weeks back, she suddenly started

> falling and confusion multiplied, then the violent attacking

> outbursts. It was as if, in a 2 wk period, she just started going

> downhill before our eyes. Even serious constipation became a

problem.

> And her brain refused to shut down for sleep.

>

> I put her in hospital on a Saturday. She was attacking the

> hospital staff cause they were trying to rape her, poison her

food,

> etc.

>

> They ran EVERY POSSIBLE TEST!!! NOTHING MEDICAL FOUND!!! They

searched

> hard trying to find a reason.

>

> Medicare kicked her out that Tuesday.They did do a med increase

of

> her Seroquel & Namenda. Hospital doctor thinks her Lexapro should

> also be increased, but didn't want to do 3 changes. I do have a

> recheck appt scheduled with her psychiatrist. (all 3 of her

doctors

> were on vacation when this happened- talk about bad timing)

>

> Granted, she's only been home about 2 wks, but I sure can see a

> difference in her. The violence and anger is gone, THANK GOD!!!

but

> the confusion is MUCH worse. so I rechecked your Phase list and

this

> still puts her in mid phase.

>

> Morning... She is about 5'4 and 130 lbs

>

> Aricept 10MG

> Lexapro 10MG

> Namenda 10MG

> Alprazolam 0.25MG

> Requip 0.5MG

> Carbidopa/Levodopa 10/100

> Stool softener Senna S

> Seroquel 50MG

>

> Noon...

>

> Requip 0.5MG

> Carbidopa/Levodopa 10/100

> Stool Softener

> Aspirin 81

>

> Supper...

>

> Requip 0.5MG

> Carbidopa/Levodopa 10/100

> Namenda 10MG

> Alprazolam 0.25MG

>

> Bed...

>

> Seroquel 200MG

>

> Her seroquel used to be 150 at bedtime ONLY. so they increased it

to

> 200 at bedtime plus added 50 to morning, yet the hallucinations

are

> still here. We have troublemaking kids running all over the

house.

> Plus she sees numbers on everything. There are numbers on her

chair,

> book shelves, table, etc.

>

> All these numbers have to do with her batches (her office job she

> used to have) she is soooo upset not knowing what or how to do

these

> batches, where to put these batches,etc. She is asking me for

help

> with her batches EVERY 5 MINUTES!

>

> I haven't been 'me' since she's been home. I'm the 'other one'

and

> this hasn't been our house since we've been home. I'm familar

with

> all these symptoms... BUT NOT AFTER A MED INCREASE!!!! They

> increased her morning Namenda to 10, used to be 5.

>

> Everyone was sooo convinced she had a mini stroke, yet nothing

found.

> No explanation for a sudden decline. No concussion. Blood work

was

> excellent, etc

>

> If you are comfortable, could you direct your comments to my

Yahoo

> email. I have problems manuevering my way through this site.

That's

> why I don't visit here often. I would love to visit here more

often,

> but just never got the hang of it.

>

> Any and all comments would be GREATLY appreciated.

>

> AGAIN... does this med list offer hints at what phase she is in?

>

>

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Just hit " reply " to this email and everyone on the site will get it. If

you have a particular question and can't find it on the site, just ask and

one of us will answer you. Don't worry.

No, the meds don't tell you what phase she's in. I don't know why they

increased her Namenda right now. That has nothing to do with her

hallucinations and you should always adjust one medication--slowly--at a

time. Does she really need the Requip? Have you seen a difference with

it? Re the cardidopa: it wears off in 4-5 hours. Do you see a difference

when it wears off? In some people (my Mom being one of them), cardidopa

can worsen the hallucinations. I only gave it to her in the mornings and

then finally stopped. 200 mg of Seroquel is a huge amount. If she was

having hallucinations at 150, I don't think this will make a difference.

How long was she on 150 mg?! Was she OK for a while and then changed? Was

she checked for a urinary tract infection? (I'm assuming she was.)

" L . H. "

<hummingbird106@y

ahoo.com> To

Sent by: LBDcaregivers

LBDcaregivers@yah cc

oogroups.com

Subject

Can her med list

03/16/2008 01:00 determine what Phase of LBD she is

PM in?

Please respond to

LBDcaregivers@yah

oogroups.com

I was wondering if you can tell what phase of LBD a person is in

according to their medications?

I am familar with your Phase list. I'm certain she has been in Mid

Phase for the last 3 yrs. A few weeks back, she suddenly started

falling and confusion multiplied, then the violent attacking

outbursts. It was as if, in a 2 wk period, she just started going

downhill before our eyes. Even serious constipation became a problem.

And her brain refused to shut down for sleep.

I put her in hospital on a Saturday. She was attacking the

hospital staff cause they were trying to rape her, poison her food,

etc.

They ran EVERY POSSIBLE TEST!!! NOTHING MEDICAL FOUND!!! They searched

hard trying to find a reason.

Medicare kicked her out that Tuesday.They did do a med increase of

her Seroquel & Namenda. Hospital doctor thinks her Lexapro should

also be increased, but didn't want to do 3 changes. I do have a

recheck appt scheduled with her psychiatrist. (all 3 of her doctors

were on vacation when this happened- talk about bad timing)

Granted, she's only been home about 2 wks, but I sure can see a

difference in her. The violence and anger is gone, THANK GOD!!! but

the confusion is MUCH worse. so I rechecked your Phase list and this

still puts her in mid phase.

Morning... She is about 5'4 and 130 lbs

Aricept 10MG

Lexapro 10MG

Namenda 10MG

Alprazolam 0.25MG

Requip 0.5MG

Carbidopa/Levodopa 10/100

Stool softener Senna S

Seroquel 50MG

Noon...

Requip 0.5MG

Carbidopa/Levodopa 10/100

Stool Softener

Aspirin 81

Supper...

Requip 0.5MG

Carbidopa/Levodopa 10/100

Namenda 10MG

Alprazolam 0.25MG

Bed...

Seroquel 200MG

Her seroquel used to be 150 at bedtime ONLY. so they increased it to

200 at bedtime plus added 50 to morning, yet the hallucinations are

still here. We have troublemaking kids running all over the house.

Plus she sees numbers on everything. There are numbers on her chair,

book shelves, table, etc.

All these numbers have to do with her batches (her office job she

used to have) she is soooo upset not knowing what or how to do these

batches, where to put these batches,etc. She is asking me for help

with her batches EVERY 5 MINUTES!

I haven't been 'me' since she's been home. I'm the 'other one' and

this hasn't been our house since we've been home. I'm familar with

all these symptoms... BUT NOT AFTER A MED INCREASE!!!! They

increased her morning Namenda to 10, used to be 5.

Everyone was sooo convinced she had a mini stroke, yet nothing found.

No explanation for a sudden decline. No concussion. Blood work was

excellent, etc

If you are comfortable, could you direct your comments to my Yahoo

email. I have problems manuevering my way through this site. That's

why I don't visit here often. I would love to visit here more often,

but just never got the hang of it.

Any and all comments would be GREATLY appreciated.

AGAIN... does this med list offer hints at what phase she is in?

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Der LH,

Welcome to our group. Folks here have saved my sanity many times over. We do

share our experiences here and has already referred you to some vital

links! My mom is 80, diagnosed 5 years ago, and her health was greatly damaged

by meds that are bad for people with LBD.

I'm not a doctor or nurse - am in admin with a senior care organization. And

while I normally don't come right out and tell people what to do, I'm breaking

my own rule. PLEASE CONTACT YOUR MOM'S MD AND very seriously consider getting

heroff the Xanax: it's part of a family of meds that can be very dangerous to

our loved ones. That is based on extensive research by MDs who are LBD experts.

And, if your mom can handle the Seroquel, another med like Xanax isn't even

needed.

Sinemet and especially Requip can also be harmful. All PD meds need to be

carefully monitored in people with LBD.

This dosage of Seroquel is very high. It is quite possible such a huge dosage

would not be needed if Xanax was discontinued and the PD meds re-evaluated. A

higher dose simply won't calm your mom down if she's reacting to the Xanax and,

possibly the PD meds. Also, there is something called Neuroleptic Malignant

Syndrome, which occurs (put simply) with overdoses of meds that affect the

nervous system. Sinemet, Requip, Xanax and Seroquel all do that.

You can show your mom's MD the medication articles by Dr .Boeve

referred you to.

He is a nationally-recognized LBD expert. Some doctors simply do not know that

all dementia is different, and that what a person with Alzheimer's can handle is

not the same in LBD.

I don't mean to scare you, but having gone through an experience with my mom

who was on the same drugs and reacted as you're describing, I just really felt a

need to write this bluntly.

Meds can work wonders for our loved ones, but we must be guided by those who

are experts in working with LBD.

Please let us know what happens.

Lin

gaat wrote:

HI L.H.

You mentioned that your mom's blood was checked but did they check her for a

UTI?

Just off the top of my head I am wondering if it wouldn't be better off to give

your mom 25mgs of seroquel in the morning and 25 in the afternoon with the full

dose at bedtime (she may not need that much if she evens out). I know this stage

when they fixate on something can be very trying on the nerves (mom wanted to

give everyone tickets - she was never a police officer) but hopefully it will

end soon. I know its hard but try to hand in there. BTW, what is Alprazolam?

Courage

Can her med list determine what Phase of LBD she is in?

I was wondering if you can tell what phase of LBD a person is in

according to their medications?

I am familar with your Phase list. I'm certain she has been in Mid

Phase for the last 3 yrs. A few weeks back, she suddenly started

falling and confusion multiplied, then the violent attacking

outbursts. It was as if, in a 2 wk period, she just started going

downhill before our eyes. Even serious constipation became a problem.

And her brain refused to shut down for sleep.

I put her in hospital on a Saturday. She was attacking the

hospital staff cause they were trying to rape her, poison her food,

etc.

They ran EVERY POSSIBLE TEST!!! NOTHING MEDICAL FOUND!!! They searched

hard trying to find a reason.

Medicare kicked her out that Tuesday.They did do a med increase of

her Seroquel & Namenda. Hospital doctor thinks her Lexapro should

also be increased, but didn't want to do 3 changes. I do have a

recheck appt scheduled with her psychiatrist. (all 3 of her doctors

were on vacation when this happened- talk about bad timing)

Granted, she's only been home about 2 wks, but I sure can see a

difference in her. The violence and anger is gone, THANK GOD!!! but

the confusion is MUCH worse. so I rechecked your Phase list and this

still puts her in mid phase.

Morning... She is about 5'4 and 130 lbs

Aricept 10MG

Lexapro 10MG

Namenda 10MG

Alprazolam 0.25MG

Requip 0.5MG

Carbidopa/Levodopa 10/100

Stool softener Senna S

Seroquel 50MG

Noon...

Requip 0.5MG

Carbidopa/Levodopa 10/100

Stool Softener

Aspirin 81

Supper...

Requip 0.5MG

Carbidopa/Levodopa 10/100

Namenda 10MG

Alprazolam 0.25MG

Bed...

Seroquel 200MG

Her seroquel used to be 150 at bedtime ONLY. so they increased it to

200 at bedtime plus added 50 to morning, yet the hallucinations are

still here. We have troublemaking kids running all over the house.

Plus she sees numbers on everything. There are numbers on her chair,

book shelves, table, etc.

All these numbers have to do with her batches (her office job she

used to have) she is soooo upset not knowing what or how to do these

batches, where to put these batches,etc. She is asking me for help

with her batches EVERY 5 MINUTES!

I haven't been 'me' since she's been home. I'm the 'other one' and

this hasn't been our house since we've been home. I'm familar with

all these symptoms... BUT NOT AFTER A MED INCREASE!!!! They

increased her morning Namenda to 10, used to be 5.

Everyone was sooo convinced she had a mini stroke, yet nothing found.

No explanation for a sudden decline. No concussion. Blood work was

excellent, etc

If you are comfortable, could you direct your comments to my Yahoo

email. I have problems manuevering my way through this site. That's

why I don't visit here often. I would love to visit here more often,

but just never got the hang of it.

Any and all comments would be GREATLY appreciated.

AGAIN... does this med list offer hints at what phase she is in?

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Hello everyone. Sorry for the delay in replying. Yesterday was not a

good day, and since its 4am as I type this, I dont think today will

be much better. They also checked for bladder infection. Again...

they couldn't find any medical reason for this. She is REALLY worked

up this morning!!!

The hallucinations are still here. In fact, it is currently pitch dark

outside but she can see all sorts of activity going on outside, and

none of it is good. I had to unplug the phones cause she is trying to

call 911.

Back in Oct 2005-Jan 2006 she took a fast and sudden nose dive on us.

She ended up near bed ridden and losing the ability to swallow.

That's when the neurologist became her primary doctor and added

Requip and she was back up and walking in 6 wks. I saw no difference

in her mental issues cause she was already " whacked out " .

Her carbidopa/levodopa and Requip have remained the same ever since.

Physically, her Parkinsons symptoms are stable and impressive, as

everyone tells me. It's her " dementia " issues that are soooooo

unstable and even frustrating for her psychiatrist.

She broke her arm June 2004. That seemed to trigger the dementia. The

Parkinsons arm tremor had been there a few yrs, but she refused to

see a doctor. She was 70 yrs old and still working an office job and

snowmobiling. Then she broke her hip March 12, 2005, and she never

came out of the surgery 'right'.

The hallucinations and VIOLENCE have been a battle ever since. She

did suffer from OCD and high anxiety most of her life, but never

treated for it. Now those symptoms are x10. I consider her

psychiatrist to be her main doctor.

Her 2 nursing home experiences were BAD. She was constantly attacking

staff and I was told a psychiatric mental ward was her only option. I

quit my job July 2005, and have successfully dealt with her myself.

Although this past month is wearing me down fast.

Part of her problem with attacking people... she has this trouble

making little girl... when that trouble making little girl is around,

I KNOW life is about to go bad. I call that little girl the WITCH!!!

That WITCH tells mother that people are planning on killing her,

poisoning her food, or trying to rape her. And that's when Mother

gets VIOLENT. If she didn't hallucinate the WITCH... we wouldn't have

many of these problems. Upping her drugs DID MAKE THE WITCH GO AWAY!!!

They added Namenda back in June 2007, I think. Considering the

excessive paranoia, and lack of understanding her environment,

something had to be done. Everyone was rather surprised at the

pleasant change in her. She actually became a nicer person.

I'm trying to remember how long she has been on the Seroquel dose of

150mg. I know it's been over a year.

I know of a 12yr that take 400mg of Seroquel for Schzophrenia and a

54 yr man that takes 600 for Bi-Polar. I started researching

Bi-Polar and suspect Mother may have been that all her life. And she

always had a mean streak in her but it was always verbally mean. Now

it's physically mean. I'm not defending her dosage of Seroquel, just

know others take a LOT more.

I've been thinking back through all the various med changes, etc. I

honestly don't know how we could have avoided these decisions, unless

the choice of med was the wrong decision. She has had pleasant

results everytime... except for now.

I KNOW FOR A FACT she's been mentally off balance most her life.

(Thank God I'm adopted and dont share the gene pool) Possibly Bi-

Polar. Anybody else have this situation???? Could that be part of our

med problem?????

I will take all your med suggestions to her psychiatrist.

Thank you EVERYBODY for your warm and thoughtful replies.

Lee Howe

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Re: Seroquel dosage - at first I thought it was a high amount too -

but according to Dr. Boeve's document it can go up to 400 mg. See

here:

http://www.lewybodydementia.org/docs/DLB-BoeveContinuum04.pdf

page 16, listed as Quetiapine

>

> Hello everyone. Sorry for the delay in replying. Yesterday was not

a

> good day, and since its 4am as I type this, I dont think today will

> be much better. They also checked for bladder infection. Again...

> they couldn't find any medical reason for this. She is REALLY

worked

> up this morning!!!

>

> The hallucinations are still here. In fact, it is currently pitch

dark

> outside but she can see all sorts of activity going on outside, and

> none of it is good. I had to unplug the phones cause she is trying

to

> call 911.

>

> Back in Oct 2005-Jan 2006 she took a fast and sudden nose dive on

us.

> She ended up near bed ridden and losing the ability to swallow.

>

> That's when the neurologist became her primary doctor and added

> Requip and she was back up and walking in 6 wks. I saw no

difference

> in her mental issues cause she was already " whacked out " .

> Her carbidopa/levodopa and Requip have remained the same ever

since.

> Physically, her Parkinsons symptoms are stable and impressive, as

> everyone tells me. It's her " dementia " issues that are soooooo

> unstable and even frustrating for her psychiatrist.

>

> She broke her arm June 2004. That seemed to trigger the dementia.

The

> Parkinsons arm tremor had been there a few yrs, but she refused to

> see a doctor. She was 70 yrs old and still working an office job

and

> snowmobiling. Then she broke her hip March 12, 2005, and she never

> came out of the surgery 'right'.

>

> The hallucinations and VIOLENCE have been a battle ever since. She

> did suffer from OCD and high anxiety most of her life, but never

> treated for it. Now those symptoms are x10. I consider her

> psychiatrist to be her main doctor.

>

> Her 2 nursing home experiences were BAD. She was constantly

attacking

> staff and I was told a psychiatric mental ward was her only option.

I

> quit my job July 2005, and have successfully dealt with her myself.

> Although this past month is wearing me down fast.

>

> Part of her problem with attacking people... she has this trouble

> making little girl... when that trouble making little girl is

around,

> I KNOW life is about to go bad. I call that little girl the

WITCH!!!

> That WITCH tells mother that people are planning on killing her,

> poisoning her food, or trying to rape her. And that's when Mother

> gets VIOLENT. If she didn't hallucinate the WITCH... we wouldn't

have

> many of these problems. Upping her drugs DID MAKE THE WITCH GO

AWAY!!!

>

> They added Namenda back in June 2007, I think. Considering the

> excessive paranoia, and lack of understanding her environment,

> something had to be done. Everyone was rather surprised at the

> pleasant change in her. She actually became a nicer person.

>

> I'm trying to remember how long she has been on the Seroquel dose

of

> 150mg. I know it's been over a year.

>

> I know of a 12yr that take 400mg of Seroquel for Schzophrenia and a

> 54 yr man that takes 600 for Bi-Polar. I started researching

> Bi-Polar and suspect Mother may have been that all her life. And she

> always had a mean streak in her but it was always verbally mean.

Now

> it's physically mean. I'm not defending her dosage of Seroquel,

just

> know others take a LOT more.

>

> I've been thinking back through all the various med changes, etc. I

> honestly don't know how we could have avoided these decisions,

unless

> the choice of med was the wrong decision. She has had pleasant

> results everytime... except for now.

>

> I KNOW FOR A FACT she's been mentally off balance most her life.

> (Thank God I'm adopted and dont share the gene pool) Possibly Bi-

> Polar. Anybody else have this situation???? Could that be part of

our

> med problem?????

>

> I will take all your med suggestions to her psychiatrist.

>

> Thank you EVERYBODY for your warm and thoughtful replies.

>

> Lee Howe

>

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Her 1st trip in a nursing home was March 2005 when she broke her hip.

We put her in nursing home for 'hip rehab'. That's when the

hallucinations and violence kicked in. Almost immediately.

Those doctors put her on Risperdal and Reminyl. I wasn't POA yet...

and they just kept uping & uping the dosages. Along with a shitload

of other drugs. They said she had Alzheimers/Parkinsons both. They

just started shoving new drugs and uping dosages almost every week.

It just seemed like a Pharmaceutical nightmare. She went from a woman

with NO drugs... to a woman with 6 drugs and 12 pills a day... all in

6 wks!!!

When I quit my job in July 2005 and moved her in with me... all POA

rights were handed over to me. The 1st thing I did was FIRED all her

doctors and hired a new set of doctors. That's when she got re-

diagnosed as LBD.

Could the previous Risperdal and Reminyl have something to do with

this???

Lee Howe

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