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Medical Forum / Diseases and Disorders / Alzheimer's / April 2004

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Lewy Body Dementia

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KD - 29 Mar 2004 23:39 GMT
Hi all:

My dad has been having problems for about a year now, starting when he had a
pacemaker put in and his docs changed his heart medication and such. Some
medications made him flip out, want to leave his wife, etc. I thought it was
a result of all the drugs being fiddled with and the pacemaker being put in,
but recently he has been diagnosed with Lewy Body Dementia.

I've looked online a bit, I know it's not the same as Alzheimers, but seems
to be related. Dad can be all right some days, other days there are
hallucinations. Nothing that seems to upset him really - sometimes he'll
walk into the room and ask his wife where all the kids went, or ask why
there are so many people in his bed. Most of the hallucinations seem to be
just an imaginary fellow he calls Dave. Last night I went out to dinner with
Dad and his wife, and as I got in the car he explained how he had tried to
talk Dave into coming with us, but he didn't want to. Later on, his wife
told me how mad Dad had gotten earlier when they came to pick me up - he
asked her why she wasn't pulling up to the front door to pick up Dave. Not
getting a satisfactory answer, he got mad.

So, I've never heard of Lewy Body Dementia before. Is anyone out there
experienced with it? After doing some research online, I realize now that he
will not get better...but how fast is the downhill ride going to be? He's
only 65 and just retired two years ago.

Thanks everyone...

KD
Adelle D. Stavis, Esq. - 30 Mar 2004 05:06 GMT
> Hi all:
>
[quoted text clipped - 24 lines]
>
> KD

Hi!

Sorry you are joining us here. But glad you found us.  There is no way of
telling how fast the slide will be. It's very individual. And depends on
general state of health, among other things.

Other people are much better with the advise of what to read, and how to
prepare. All I can give is our experience with frontal lobe dementia. My
father in law had a different kind of frontal lobe dementia, but the
progression is similar to LBD.

The biggest difference is the LO's lose function from the front of the brain
first, then it creeps more towards the back. In AD, the progression is from
the back towards the front.

Memory stays a little longer, but they have trouble finding the word they
want to use, so they 'talk around' something. Control over emotion,
especially volatile ones goes sooner. And anything with an emotional
component is remembered longer than facts. They seem like the same person in
many ways, but the loss of emotional control makes them very hard to deal
with.

Hallucinations occur earlier, and motor skills hang around longer.
'Executive function,' knowing what order to do things (like bathe - take off
clothes, turn on water, get into tub, get wet...) gets lost. So they think
they know how to drive (or cook, or do woodworking...) because they remember
that they drive/drove. Get nearly violent if you suggest that maybe it's not
a good idea. But will get lost on streets they have traveled their whole
lives, even when they can remember the steps for starting and driving a car.

Later, social appropriateness can be lost - like remembering one needs to be
dressed in public. Oral skills are lost much sooner.

I would suggest doing a google search under "frontal lobe dementia." Of the
dementias, it is particularly cruel, as communication skills are lost sooner
than with AD.  And then they lose oral motor skills but can hang around for
a long time after that. It's really sad.

My FIL lost oral motor skills after anesthesia during surgery to repair a
hip fracture. He developed aspiration pneumonia and didn't recover from it.

One small consolation, if it is indeed LBD (as opposed to other forms of
FLD), it is not something which runs in families, so there is little chance
you are destined to have it.

Adelle
Mary Gordon - 30 Mar 2004 13:56 GMT
KD, I'm so sorry about your father.

If you use google and do a search, you'll find lots of good material
such as these sites
http://www.lewybodydementia.org/lbdlinks.html
http://www.zarcrom.com/users/alzheimers/odem/lewy-d.html#l1
http://www.nottingham.ac.uk/pathology/lewy/lewyhome.html
http://www.pdsg.org.uk/Factsheets/LewyBody.htm
http://www.postgradmed.com/issues/2003/05_03/stewart2.htm

When they do talk about prognosis and speed of progression, the
message is the same as this clip from the Alzheimer's Association
page:

"Lewy body Dementia differs from Alzheimer Disease in that the
progression of the disease is usually more rapid. Marked fluctuations
in confusion can vary from hour to hour or week to week. Visual
hallucinations (seeing things which are not real) are common and can
be worse during times of increased confusion. Unlike Alzheimer
Disease, memory difficulties may not be present in the early stage of
the disease."

Mary G.
OcnGypZ - 30 Mar 2004 21:08 GMT
>Subject: Lewy Body Dementia

My 67 year old cousin has Lewy Body dementia along with Parkinson's disease.

He started having problems about 5 years ago.

He has his good days.. and his bad days.
He's in a nursing home, taking the new meds. In his case, he is still very
talkative, however, his motor skills are minimal.

Hang in there.

Babette
Darryl - 30 Mar 2004 22:32 GMT
Hi KD,

Mary's posted some useful links.  Here's another that deals with one
family's experiences:
http://www.lewybodyjournal.org.

-----
The following paragraph was gleaned from:
http://www.ninds.nih.gov/health_and_medical/disorders/dementiawithlewybodies_doc.htm

"Is there any treatment?
Scientists continue to search for a specific course of therapy for
people with dementia with Lewy bodies. Treatment is symptomatic, often
involving the use of medication to control the parkinsonian and
psychiatric symptoms. However, patients should be aware that
antiparkinsonian medication that may help to reduce tremor and loss of
muscle movement may actually worsen such symptoms as hallucinations
and delusions. Similarly, neuroleptic drugs prescribed for psychiatric
symptoms may in fact markedly worsen the movement symptoms. In general
atypical antipsychotic medications are more successful than older
drugs such as haloperidol."
-----

My Dad was diagnosed with early-onset Alzheimer's disease (EOAD) at 56
years old.  At 59 he underwent several acute medication changes (i.e.,
one drug was not tapered off while the other was titrated up to
therapeutic levels) and his condition worsened drastically.
Unfortunately(?) he went from caring for himself and being able to
hold a conversation to his death within a month.  Since Dementia with
Lewy Bodies (DLB) was only revealed at autopsy, everyone worked with
the assumption that he suffered from EOAD.  Because of the rapid
decline and onset of hallucinations, he was prescribed the typical
anti-psychotic haloperidol.  This, coupled with the medication changes
and sedation by ativan (he became quite violent) were a little too
much for the old fart to handle.  

The rate of progression in DLB varies, although it is thought that it
occurs faster than in AD.  

A technical read can be found here:
http://www.emedicine.com/neuro/topic91.htm

Take care,
Darryl.

>Hi all:
>
[quoted text clipped - 24 lines]
>
>KD
KD - 30 Mar 2004 23:24 GMT
Thanks everyone, for your supportive responses.

As of now, Dad is not really that bad. He has his hallucinations, which
don't really seem to upset him. We're fortunate in that his motor function
is not really impaired, he's not showing any Parkinson's symptoms, although
he has been a bit slouched over for quite some time. At times he gets
agitated and unreasonable - for example, one recent Sunday morning he and
his wife decided to drop by our house on their way home from brunch. My
husband and I were at church. But from what my stepmother told me, he was
convinced that we were indeed home, but chose not to answer the door because
I just didn't love him, didn't care. And nothing she said could talk him out
of it. Even when I came over later that day, he was quiet and still seemed
mad at me for this imagined slight.

I am not his primary caregiver, his wife is, and I know she probably has it
worse than she lets on - certainly far worse than I do. But I seem to be the
life preserver, the one person in the world that can convince him that he is
at home and not somewhere else he doesn't belong, that he shouldn't go out
to find a job, that he is loved and cherished. If I go a day without being
on the phone with him, he takes it as a personal insult and a sure sign that
he is despised and unwanted by me. If I say I may be coming over later, or
calling, he waits eagerly for it, and gets really depressed if I'm late.

It was only recently that he was given the Lewy Body diagnosis, and on the
29th I went online and looked up what it was all about. I guess learning all
this has finally brought it all to reality for me. Some part of me has been
convinced over the past year that this is a passing thing, surely that he
would get better. I mean, he only turned 65 last year, he just retired the
year before that. It all started when he had his pacemaker put in and his
drugs switched around, surely it must have had something to with that and
with time it would all pass.

But that fantasy is over for me now. I know he's not going to get better.
The best he is today is quite likely the best he will ever be.

It's depressing, isn't it? I just got married last year, and thank God he
was still able to walk down the aisle with me on my wedding day. We're
planning to start working on having a family next year, he has always
dreamed of being a grandfather. But it will be at least a year or two before
those grandchildren come, will he be cognitive enough to able to enjoy them
by that time? Will he even last that long?

I'm finding myself growing depressed over this...I'm torn between guilt over
not being there with him every day, and not being able to deal with his
continual needs and seemingly unreasonable demands on me.

I'm sorry to be such a gloomy poster...I know that many of you have it far
worse than I do. But as you all probably know, it's just horrible to watch
this. I guess I just assumed that he would always be there. I was so looking
forward to the day when I give him a grandchild, but from what I'm reading
about this horrific disease, he may never get to enjoy his grandchildren the
way he always dreamed he would.

KD

> Hi all:
>
[quoted text clipped - 24 lines]
>
> KD
Evelyn Ruut - 31 Mar 2004 00:24 GMT
> Thanks everyone, for your supportive responses.
>
[quoted text clipped - 50 lines]
>
> KD

KD don't you dare worry for a minute about being a "gloomy poster"  That is
what this newsgroup is for, and if you ask me there is little that is
gloomier in real life than watching someone die by inches and to see the
person you knew and loved, disappear before your eyes.

We have all been in your shoes in one way or another.   My husband and I
were just getting ready to enjoy his long awaited retirement, when his mom
suddenly started behaving oddly at times.   That was about 4 years ago, and
for the last three years she has been living with us.

You are just beginning your journey with this illness, and we are coming in
to the final lap, as we are presently going through all that needs to be
done in order to place her in a professional facility, or nursing home.

Feel free to come here, vent, rant, ask questions, answer them, and just
come to find friends who are also going through the same thing.   I cannot
begin to tell you how much their support has meant to me.   I told the
posters here all that was in my heart and all the difficulties we
encountered every step of the way.   The advice and comfort I found here was
top notch.

You are welcome to join us anytime you have feelings you want to share along
the way.  It may be a journey no one wants to go on, but the friends from
this newsgroup have surely made it bearable.
Signature

Evelyn

(To reply to me personally, remove sox)

Adelle D. Stavis, Esq. - 31 Mar 2004 04:45 GMT
> Thanks everyone, for your supportive responses.
>
[quoted text clipped - 37 lines]
> those grandchildren come, will he be cognitive enough to able to enjoy them
> by that time? Will he even last that long?

(lots of important stuff snipped)

KD,

This comment about your Dad and grandchildren really hit home. And honestly,
we can't promise you anything. The answer is, possibly not. There are no
words for the sadness that invokes. That's why we gather here at this NG.
Everyone here has 'been there, felt that.'

My FIL wasn't really interested in his grandkid (we still only had one at
the time) before we realized some odd behavior was actually a symptom of the
dementia. He was just someone who had no desire to relate to someone who
wasn't automatically interested in the same hobbies he had. And the more
symptomatic he became, the less he was able to handle being around the kids,
because  their normal energy levels left him feeling very confused and
overwhelmed.

By the time we realized what the symptoms meant, he had no meaningful way to
relate to his grandkids because he had trouble remembering how one is
supposed to feel and act towards family, even when he could say, "this is my
granddaughter" (remember, emotions and executive function go away). When he
died, my kids had no emotion for him, because he was never able to make a
connection with them.

My Dad, whom we lost two years before my FIL (from cancer) lamented a few
days before he died that my son (2 at the time) wouldn't remember him as a
grandpa, only as a sick, old man.

There are never any guarantees. But we do keep a photo gallery on our fridge
which includes all members of the extended family, even those deceased. The
kids see these pictures every day and know who these people are. It's become
very important to them.

Adelle
Songbird - 31 Mar 2004 15:05 GMT
> . We're
> > planning to start working on having a family next year, he has always
[quoted text clipped - 19 lines]
>
> Adelle

Both my grandmothers died before I was born, and I was named for both of
them. My maternal grandmother died five months before my birth, but I have
always felt I *knew* her, because my mother always told me stories about her
or made comments like "your grandmother would have enjoyed that story you
wrote." She was camera-shy, but I saw the few photos my mom had on a regular
basis.

On the other hand, my father lost his mother in a drunk driver vs.
pedestrian accident when he was 15. He found her body and his stepfather's.
He had been close to her, and the memories were so painful, he never talked
about her. I never saw a photo of her until last summer, when I asked his
sister (whom I saw rarely because the family was understandably scattered
after her death) for one. I also asked my aunt for any memories she had of
her mother she was comfortable sharing, and finally I know where my blonde
hair and soprano voice came from. (She once sang with Nelson Eddy!)

So in short -- KD, take pictures now. Write down funny or tender stories to
share later. One, it may help you focus on the gift of love you have
received, which may help you through this tough time, and two, it will help
you remember things to tell your children so he will be *real* to them. As
long as he can communicate, ask him about his memories of growing up -- what
was school like? what games did he play? what chores did he do? Ask him
about the first time he saw your mother. Sometimes the past is more real
than the present, and the memories may bring him enjoyment as well.
(Obviously if he can't communicate or it frustrates him, drop it.)

I'm on the start of this journey too. This NG is a place to vent, cry,
scream, ask and laugh. So don't worry about censoring your emotions here --
as they used to say, let it all hang out, baby!!!

Songbird
Dennis P. Harris - 31 Mar 2004 07:10 GMT
> I'm torn between guilt over
> not being there with him every day, and not being able to deal with his
> continual needs and seemingly unreasonable demands on me.

DO NOT FEEL GUILTY. guilt is NOT allowed in this newsgroup.

you do what you can, and learn to accept that it's what you can
do.  you need to learn to NOT feel guilty because it does no one
any good, and you really can't change things.

you need to take care of yourself first, because if you don't you
won't be able to take care of him at all if you get sick.  you
need to take time for yourself so that you can preserve some
sanity.  you need to take time for your spouse to keep your
marriage going (and having a parent with dementia is a sure test
of whether your marriage will survive long term).

NO GUILT!
Gwen Love - 01 Apr 2004 00:19 GMT
Dennis is absolutely right; guilt is NOT allowed on this newsgroup.  We all
do/did the best we can/could with the information available at the time we
make a decision and that is all anyone can do.  NO GUILT!
Gwen

Signature

===========================================================
No one can walk all over you without you lying down on the ground first!
===========================================================

|
| > I'm torn between guilt over
[quoted text clipped - 15 lines]
|
| NO GUILT!
KD - 01 Apr 2004 22:39 GMT
Ok, I'm working on that part!  In reality I am not his primary caregiver
though, and feel a bit bad about his wife having to handle so much of it.
Even the bits that I get are hard enough.

This is such a very strange disease though...different I think than
Alzheimers, in that it comes and goes. This morning I get a call from Dad's
wife, he's been up since 2 a.m. and is being unreasonable, can I please talk
to him. So he gets on the phone, tells me he's in a trailer and doesn't know
why he's there, he wants to go home. As the discussion progresses, he's now
on a railcar, and he's supposed to be working and earning a paycheque, but
is not sure what he's supposed to be doing. I just sort of went along with
it, tried to change the subject, told him to take a break and watch some TV,
read his newspaper, but I didn't help much I don't think. He then told me
that he couldn't relax and do any of that because I had upset him - although
he changed his tune quickly when I said I didn't want to upset him and
perhaps would hang up and call back later. But then an hour or so later I
called back and spoke withh his wife, he had decided to go for a nap. He
gets up from that half hour nap and is a changed man, the one that we know.

We're also discovering that playing into his delusions can help. The other
day, he walked into his living room where his wife was playing cards on the
computer, and asks, "Where's Sue?" (her name). When she pointed out she was
right there, he said, "No not you, the other one." He was even to the point
of opening up the apartment door and looking to see if she was coming.
Finally she got up and left the room, then opened and closed the door like
she was coming in, then came over to him and greeted him. "Where have you
been?" he asked.

I am going to take the advice that was given earlier and get snapping with
my camera. If my children don't get to know him in person, I will make sure
that they know who he was before this disease started taking over his mind.

I think that we are also going to try to make this summer all that it can
be. For a couple of years we've talked about a camping expedition for
example, just an overnighter, but only talked and never done it. Well this
year, we will do it. And everything else that we can fit in, because we
don't know what tomorrow will bring...or even if tomorrow is going to have
Dad in it.

On another subject, I was wondering if there are some simple activities that
your...I don't even know what the proper term is here...your loved ones
perhaps? In my mind right now, victims seems more appropriate. Anyhow, I was
thinking simple puzzles or games or something that he could do that could
keep him busy. I don't think he could manage a card game really, maybe
checkers or something like that could occupy him. Have any of you tried
this?

It is wonderful to talk to people like all of you, people who genuinely
understand what is happening, have been there and been through it and know
what we're going through. Thank you so much for your support. I know that
many of you have it far worse than I do right now, and I am grateful for
your words of encouragement when you're all going through your own version
of this.

KD

> Hi all:
>
[quoted text clipped - 24 lines]
>
> KD
Songbird - 01 Apr 2004 23:09 GMT
> On another subject, I was wondering if there are some simple activities that
> your...I don't even know what the proper term is here...your loved ones
[quoted text clipped - 3 lines]
> checkers or something like that could occupy him. Have any of you tried
> this?

A  friend of mine's dad with AD now loves playing dominos. It is simple
enough for him to follow.

Songbird
Evelyn Ruut - 02 Apr 2004 00:09 GMT
They would often play bingo at the daycare center.   It is a simple enough
game that didn't involve any particular strategy or memory skills, and the
clients could all participate.   They would help one another with it too.
Ida only stopped participating in the last few months.

Signature

Evelyn

(To reply to me personally, remove sox)

> > On another subject, I was wondering if there are some simple activities
> that
[quoted text clipped - 10 lines]
>
> Songbird
Lesanne - 02 Apr 2004 00:58 GMT
My Mom plays a simple card game, that is basically counting - Skip Bo.
Lately she needs help, but she still enjoys it.  I have also noticed my 2
1/2 year old granddaugther orienting her.  She comes up to her several times
a day, sticks out her little hand and says, "whats your name?" "Shake hands
and tell me whats your name?"

> They would often play bingo at the daycare center.   It is a simple enough
> game that didn't involve any particular strategy or memory skills, and the
[quoted text clipped - 16 lines]
> >
> > Songbird
Gwen Love - 02 Apr 2004 03:48 GMT
Lesanne, what a sweet, smart granddaughter you have!
Gwen

Signature

=================================
Ability is what you're capable of doing.
Motivation determines what you do.
Attitude determines how well you do it.
- Lou Holtz
=================================

| My Mom plays a simple card game, that is basically counting - Skip Bo.
| Lately she needs help, but she still enjoys it.  I have also noticed my 2
[quoted text clipped - 26 lines]
| > >
| > > Songbird
Tumbleweed - 02 Apr 2004 00:02 GMT
> Ok, I'm working on that part!  In reality I am not his primary caregiver
> though, and feel a bit bad about his wife having to handle so much of it.
[quoted text clipped - 34 lines]
> don't know what tomorrow will bring...or even if tomorrow is going to have
> Dad in it.

I dont want to rain on your parade, and maybe LBD is different, but my
experience and that of many others here I think, is that moving these folks
into a strange environment can be very stressful for them (and therefore for
you!). There are also added complications that (esp for something like
camping) they may wander off and get into harm more than they might at home.
For only one night its probably not too bad, but just make sure he's not
liable to wander! What is he like on long trips?

I took my dad on a vacation a few years ago, came home early as he was
waking up every hour in the night and asking where we were, when he was
going home, etc. I thought it would be good for him as we were doing stuff
he liked all day long, but in reality he was better off at home where he at
least 'felt' safe even if he didnt always know where he was.

Then later, when he was worse, he *hated* being away, complained constantly
even when staying at relatives just overnight, on the car journey there, etc
(anything longer than 5 minutes was a very long journey to him). YMMV of
course, I hope it does.

> On another subject, I was wondering if there are some simple activities that
> your...I don't even know what the proper term is here...your loved ones
[quoted text clipped - 3 lines]
> checkers or something like that could occupy him. Have any of you tried
> this?

Must be different for everyone, my dad used to be great at card games, but
couldnt even manage simple dominos now, (and he doesnt like it) but does
enjoy things like skittles or catching. When you do find something they like
you can do it indefinitely they arent going to get tired of it :-)

> It is wonderful to talk to people like all of you, people who genuinely
> understand what is happening, have been there and been through it and know
[quoted text clipped - 4 lines]
>
> KD

IME it gets worse (as they do), and then it gets better (when they get worse
beyond a certain point) because they get too far gone too even experience
the anxiety and trauma they did before. I would advise that chances are he
will have to go into a home eventually, because 24x7 care is too much for
any one person,and you need to start thinking about that earlier rather than
later. Is daycare appropriate for LBD, to give his wife some respite? Its a
whole different experience looking after someone 24x7, something I only did
for a few short periods,and they need a break.
Signature

Tumbleweed

Remove my socks for email address

KD - 02 Apr 2004 00:59 GMT
They do have some daycare now, a homecare worker who will come in and spend
time with him two or three times a week and let his wife get out and get her
hair done or whatever, although sometimes she stays there while the person
is there. I have recently offered my own house as a place of rest during the
day - we only live a few blocks away and work during the day, the house is
vacant while we're working and I've suggested to her that she come here
while there's someone with him, watch soaps, take a nap, whatever she needs
to do. She doesn't seem too keen on the idea, but I'm hoping she will
eventually take me up on it. Otherwise she may very well burn out on this.

I know that he will quite likely have to go to a home eventually, I have
resigned myself to this fact. I recently ensured with her that she has power
of attorney, in the case that decisions have to be made for him because he
can't. It may very well be that way now, I'm not sure, but she does have the
POA already.

Regarding the camping, I think we'd be all right. We'd have tents close
together, and he'd have to climb over her to get out. She has become
accustomed to sleeping lightly, so he wouldn't likely be able to get away
without our knowledge. But we'll certainly be more on the alert during a
camping trip.

Thanks for listening...

KD

> > Ok, I'm working on that part!  In reality I am not his primary caregiver
> > though, and feel a bit bad about his wife having to handle so much of it.
[quoted text clipped - 102 lines]
>
> Remove my socks for email address
Evelyn Ruut - 02 Apr 2004 01:01 GMT
> They do have some daycare now, a homecare worker who will come in and spend
> time with him two or three times a week and let his wife get out and get her
[quoted text clipped - 19 lines]
>
> Thanks for listening...

KD, as Tumbleweed already pointed out, they usually HATE being in a strange
place and ask over and over "when are we going home?"

Ida was absolutely impossible when I took her on a short trip to NJ to visit
my father about a year ago.   Two hours down there, a nice visit and two
hours back.   A gorgeous day, and I thought "what could possibly go wrong?"

It was pure hell.   She forgot who I was, and nagged me the entire time.
It was something I never did again.    They are happiest in secure and same
surroundings.   What we see as an exciting change of scenery, they see as
unfamiliar and scary.

You could try it and see how it works out.... have a contingency plan just
in case it doesn't.

Signature

Evelyn

(To reply to me personally, remove sox)

Adelle D. Stavis, Esq. - 02 Apr 2004 01:34 GMT
My MIL's experience with taking Alan traveling was a little different. I
think it's because it played into his hobby - photography.

They had always wanted to go to the Grand Canyon. When the diagnosis of FLD
was finally made, MIL made the plans for the trip. Alan complained about the
travel part, and wanting to go home, but loved the scenery and taking
pictures. He even had moments when he thanked her for talking him into going
(didn't last, but...).

The disease process had my FIL pacing in the evening and getting lost when
he was trying to get to a specific place, but never wandering. And FLD
patients keep complex thought processes longer than AD patients (note the
complexity if KD's Dad's hallucination).

As for Day Care, what people mean is a center where the patients go for
activities. The constant mental stimulation keeps the patient more present
and using what they have. I wonder about this for FLD patients, because
their thought processes are still fairly advanced.

My FIL remembered how to do garden chores, kept the kitchen clean, and other
houskeeping stuff even when he forgot he had congestive heart failure and
refused to take his meds (getting violent if you tried to make him). He
could operate a car, but would get lost going to the hardware store. He
could compose gorgeous pictures as a photographer, but entered sweepstakes
and answered scam artists compulsively (KD - watch for compulsive behavior.
Buying the same thing over and over, answering scam mail, etc.).

All this until about six months before he wound up in the NH. And until the
anesthetic put him on that downward spiral, he was continent, could feed
himself, and could sound lucid at the beginning of a conversation until he
trailed off into a hallucination (though not bathe or shave).

Watch the paranoia that comes with the hallucinations. Getting on
antidepressants and possibly antipsychotics sooner as opposed to later. FLD
patients have fewer restraints on their emotions, and also, on acting on
these emotions. When angered or scared, the can act to protect themselves
from imaginary dangers, but in doing so, they can strike out at the nearest
peopl. Medication helps with that, but not entirely.

Adelle
Darryl - 02 Apr 2004 03:18 GMT
>Watch the paranoia that comes with the hallucinations. Getting on
>antidepressants and possibly antipsychotics sooner as opposed to later. FLD
[quoted text clipped - 4 lines]
>
>Adelle

Antipsychotics are the tricky part of DLB.  Typical antipsychotics may
be contraindicated in DLB (causing Parkinson's like symptoms) and in
fact, haloperidol may have been a trigger in my Dad's decline.  Now,
we've just learned that the atypical antipsychotics may be associated
with cerebrovascular adverse events and on March 22, the FDA realeased
a note regarding olanzapine (Zyprexa) and a risk of hyperglycemia and
diabetes:

http://www.medscape.com/viewarticle/472363
(if this link doesn't work, the article is appended below).

Back to my Dad...while it is an unpleasant story, I'll reiterate it
once more.  

My Dad wouldn't hurt a fly.  Then he started questioning my Mom and
brother quite vigorously as to their "intentions" asking them, "why
are you keeping me here".  "Here" was home.  

I was called home from school (I'm out of town) when things got bad.
His delusions and hallucinations intensified to the point where I
could drive him home (i.e., around the block) and calm him for 10 min.
or so.  Then the haldol kicked in and he became sedate but developed a
a gait disturbance and syncope (i.e., fainting) overnight!  The
following 2 days were living nightmares--his tone was frustrated and
threatening.  His 6' and 200 lbs became a bit of a concern.

Finally, on a visit to the emergency room, he became physical with me
and cleanly landed maybe 5 of about 100 puches.  These punches were
thrown with the intent to hurt and if they didn't, he sure was "going
to get a gun and shoot me".  He would have lucid moments but they
would be quickly extinguished by rage.  

I'm sure (or hope) that most DLB sufferers don't get to this stage but
it's something that all caregivers should consider once those
hallucinations/delusions become too real for everyone involved.  

Aie...

Darryl.

=====
Olanzapine Labeling Change Indicates Risk of Hyperglycemia, Diabetes

Medscape Staff Report

March 22, 2004 — Eli Lilly and Co. has notified healthcare
professionals of a revision to the labeling for olanzapine (Zyprexa),
describing the increased risk of hyperglycemia and diabetes in
patients taking the drug.

The U.S. Food and Drug Administration (FDA) has asked all
manufacturers of atypical antipsychotic medications, including Lilly,
to add this warning statement to drug labeling, according to an alert
sent today from MedWatch, the FDA's safety information and adverse
event reporting program.

In addition to olanzapine, the atypical antipsychotic class includes
clozapine (Clozaril; Novartis), risperidone (Risperdal; Janssen),
quetiapine (Seroquel; AstraZeneca), ziprasidone (Geodon; Pfizer), and
aripiprazole (Abilify; Bristol Myers Squibb and Otsuka American
Pharmaceutical).

According to the revised olanzapine labeling, "Hyperglycemia, in some
cases extreme and associated with ketoacidosis or hyperosmolar coma or
death, has been reported in patients treated with atypical
antipsychotics."

The revised labeling recommends that "[p]atients with an established
diagnosis of diabetes mellitus who are started on atypical
antipsychotics should be monitored regularly for worsening of glucose
control. Patients with risk factors for diabetes mellitus (e.g.,
obesity, family history of diabetes) who are starting treatment with
atypical antipsychotics should undergo fasting blood glucose testing
at the beginning of treatment and periodically during treatment."

In addition, all patients treated with atypical antipsychotics should
be monitored for symptoms of hyperglycemia, including polydipsia,
polyuria, polyphagia, and weakness, the labeling states. Patients who
develop symptoms of hyperglycemia during treatment with atypical
antipsychotics should undergo fasting blood glucose testing. In some
cases, hyperglycemia has resolved when the atypical antipsychotic was
discontinued; however, some patients required continuation of
anti-diabetic treatment despite discontinuation of the suspect drug.
Adelle D. Stavis, Esq. - 02 Apr 2004 20:27 GMT
> >Watch the paranoia that comes with the hallucinations. Getting on
> >antidepressants and possibly antipsychotics sooner as opposed to later. FLD
[quoted text clipped - 12 lines]
> a note regarding olanzapine (Zyprexa) and a risk of hyperglycemia and
> diabetes:

My FIL had a non-specific FLD, and not DLB. As we look into things, it may
be a form of multi-infarct dementia which just happened to affect the
frontal lobe first. The PET scan was clear that the atrophy was most
pronounced in the frontal lobe area.

But this medical difference may explain why anti-psychotics worked for him.
While my MIL never told us what all of his medications were, we know there
was an antidepressant (probably Paxil) and something to make him less
aggressive (which was non-sedating in effect, so I doubt it was a tranq.).
The result was that while he continued to relate made up info (like news
about how they were going to redesign a highway or build a building next
door), it ceased to be paranoid stuff about people following him and
stealing from him.

Adelle
KD - 02 Apr 2004 23:15 GMT
My dad is on so many meds it isn't even funny. He's got at least nine
different medications that are taken pretty much every day...two are
anti-psychotics (which seem to have helped rather than hindered - I think),
blood pressure, anti-clotting, chlolesterol lowering...the list goes on and
on.

The two antipsychotics are Seroquel (often prescribed for schizophrenia) and
Reminyl which I understand is an AD drug. Before the trouble started, I
think there were even more, related to heart problems. When all this first
started going on, before he went on those two, we wondered if it was just
this incredible mixture of drugs floating around in his body that were
wreaking havoc on his mind. His wife asked the doctor what would happen if
we just stopped them all, and they advised against it, the opinion was that
he would go downhill very rapidly. So we listened. Who knows if they were
right. We won't take the chance of taking him off any of it of course.

You all must wonder, as I do, what causes this to happen to our LOs. I
wonder about any studies that have been done, if there are factors that are
shared by many who end up with this horrible disease. I can think of several
things that could be risk factors for Dad - he had two heart attacks, triple
bypass surgery 15 years ago, has been a heavy drinker at times (though
fortunately no longer). Over the years he's been prescribed a pile of drugs.
When he retired and went from being active all the time to having nothing to
do, no purpose for getting up in the morning, and found himself bored silly
with retirement, did lack of stimulation contribute to it?  I guess I just
wonder if there are things that could have prevented this nightmare, or even
just slowed it down.

Thanks again for listening. My current task is to a) try to slow down the
guilty feelings and b) try to be there more for his wife than I currently
am. I seem to be the magic bullet a lot of times, talking to me seems to
calm him or take his mind off things, or at the very least, cheer him up.
While it's difficult to listen to his tall tales sometimes, I'm learning to
just play along and let him tell me about whatever he wants. If it makes him
feel better, then it's what I have to do.

KD

> > >Watch the paranoia that comes with the hallucinations. Getting on
> > >antidepressants and possibly antipsychotics sooner as opposed to later.
[quoted text clipped - 30 lines]
>
> Adelle
 
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