Zyprexa, the miracle drug in our life with LBD

[Guest guest]

In a message dated 2/3/02 8:35:53 PM Central Standard Time, pax@...

writes:

> I'd heard from a physician that LBD does cause a person to sleep more and to

> need to sleep more.

Welcome, Pax. So sorry for the horrible turmoil you have been through with

your mom and Zyprexa. We haven't used it here so far.

Re your comment about sleep - it is certainly true here!! My husband goes to

bed about 10:45-11:00. Just how much sleep he gets after 1-2 hours I don't

know as I had to send him back to the guest room for my own survival. But

after his 8-9AM meds he sleeps soundly until 11-1 unless I have to get him up

for something. When I do, he doesn't function at his best and will sleep at

the drop of a hat.

You asked about the 6-7 yr estimate for this disease. The literature I was

able to obtain after my husband's diagnosis in 1998 indicated an average 7 yr

life span. His PCP said that meant from dx. I can see him sick as far back

as 9 yrs ago, though. More recently I read that the life span and length of

duration of the disease is more in line with Alzheimer's - 15-20 yrs.

Again, welcome to the site, and I hope we will hear more from you.

Cheryl (caring for 72 yr old husband who is declining slowly)

[Guest guest]

In a message dated 2/3/02 8:58:26 PM Central Standard Time,

lenz_hl@... writes:

> I feel so badly for her - she's always hated the place and now they're

> forcing her to drink that ensure stuff, she's in diapers and seems

> unwilling or unable to use utensils when she eats.

I feel badly for her, too, Hez, and for you. Not only are some forced to

endure in the face of the inevitable, but loving family is forced to endure

watching.

All my best,

Cheryl

[Guest guest]

Hi,

I'm new to the list, but sadly not new to Lewy Body Disease. My mom

who is now 76 was diagnosed in May on 1999 in Seattle. We had searched

for an answer as to what was going on with her to no avail. All her

physician would say was " she doesn't have AZ " . She experienced the

falls and eventually the hallucinations, agitation and paranoia. After

an absolute breakdown with my sweetest mother brandishing forks,

knives and thinking we were trying to kill her I took her to her

doctor. They told me I had to take her to a large downtown hospital

for evaluation. Duriing her stay they actually overdosed her on

Haldol, (the absolute no-no for LBD) and totally wrecked her ability

to talk in a complete sentence and she was comatose in a fetal

position. We got her out of the hospital and she went to a full time

private memory care center which was brand new. She also had the

agitation, anger, grabbing and throwing dishware and utensils and it

was questionable whether she could stay at the center. Her whole

personality was like a entirely different person complete with foul

language out of her Baptist mouth.

By a fluke chance we read an article in the Vancouver Sun in Canada

where my sister lives. It was about Zyprexa or the generic drug name

olanzapine and it's effectiveness in the elderly. It is an

anti-psychotic and hereafter we have referred to it as the " miracle

drug " !! The turnaround was astounding, it took two weeks for us to

begin to see any changes. We began to see the smiling and laughing

sweet mother we once had come back again. The agitation, anger,

grabbing and throwing absolutely stopped. She is a small woman between

118-125 pounds, yet her dose is only effective at 7.5 mg per day. Once

during the past years, her doctor discontinued the drug without our

knowledge. the results was a disaster, within 3 weeks she was

comotose, unable to function, couldn't open her eyes or communicate

and swamped with hallucinations. We quickly had her Zyprexa restored

and two weeks later she was back again. She has had siezures as the

result of the LBD (anyone else experienced this)? When at the hospital

the doctor reduced the does to 5mg and again in two weeks she was back

to the nasty grabbing, angry, hallucinating person. Again we had the

dose returned to the 7.5 level and again in two weeks she was back to

the sweet personality. She takes a low level of Dilantin for the

seizures.

Had it not been for the Zyprexa I don't know where my mom would be

today. Even though I've been in the health care field I've never known

one medication to make such and incredible difference and then to see

the results when it is removed. I don't know if others have tried this

medication but I'd sure like to hear if you have.

It the 3 years since we have dealt with this disease she has gone from

walking and dancing to completely being in a wheelchair. We had her

walking a few steps at Christmas but it has been hard for her to not

be able to walk.

My mom now takes a nap everyday after lunch, without it by the end of

the day she also has a tendancy to be cranky. I'd heard from a

physician that LBD does cause a person to sleep more and to need to

sleep more.

Hope this helps a bit, again if anyone has experience with this drug

or with seizures and LBD, please let me know.

Another couple of questions, has anyone heard the 6-7 year estimate of

this disease? Also has anyone heard of any research in regards to

heridity and LBD?

Pax

Brooklyn, Washington State

-- In LBDcaregivers@y..., sanclown@w... wrote:

> Hey group-

> I have a question concerning hallucinations and agitation. Has

anyone

> noticed their LO being more agitated or having more hallucinations

at

> particular times of the day? My dad REALLY has been struggling with

> mornings. He DOES NOT want to get out of bed, DOES NOT want to take

> meds., and DOES NOT want to eat or change his clothes. He has been

> hitting walls, growling, and just completely combative and agitated.

> Knowing him well, I can mostly see him looking through me, thinking

> these are hallucinations and not geared toward anyone in the real

world.

> By afternoons, or even late mornings, he has calmed down, and is

much

> more pleasant. Please reply anyone.

> Sandie

> Des Moines, IA

[Guest guest]

I think longevity might also depend on how the disease presents - ie

Parkinbson's first or dementia first. Perhaps age at dx also. My mom,

being 85 now, is unlikely to live 15 more years even without LBD I would

think.

My mom is very sleepy. Now she's become agitated when awake. She has had

pneumonia since early December. She's been on 2 different antibiotics.

When the course of treatment ends it returns. I firmly believe that her

body is saying something. When they added the 3rd course of antibiotics, (

against my express instructions), she has become muchj more anxious and

psychotic. She has allergies to some antibiotics and I think they're plain

tempting fate. Either that or she cycles into the deeper psychotic state

every 4 or 5 months - also possible. I feel so badly for her - she's always

hated the place and now they're forcing her to drink that ensure stuff,

she's in diapers and seems unwilling or unable to use utensils when she

eats.

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[Guest guest]

>As for seizures, the only thing I've read is that seizures can occur

if certain meds are taken away too quickly,

>Hope this helps a bit, again if anyone has experience with this

drug or with seizures and LBD, please let me know.

When my husband was in the worst of his hallucinations (just before

dx) he said there were little devils attacking him and making his

fingers tingle. I thought he was hyperventilating and convinced him

he was OK. While he was hospitalized, I found out that tingling in

the extremities is a sign of a mild seizure.

He was on Zyprexa for a while and it did help. But he refused to

take it after a few months because it made his brain " fuzzy. "

Sally