Re: Zyprexa & Risperdal &

[Guest guest]

We've had great luck with Zyprexa - relatively small dose (5 to 7.5

mg/day, divided doses, more at night), but it *is* known to cause more

movement problems than some of the other options. A lot of people

like Seroquel better.

The apathy might be most effectively treated with a psychostimulant

like Provigil, Dexedrine or Ritalin. I've posted here about it more

than I should, there's info at the LBDA site, and in their forums, or

feel free to contact me offline so I can rave about how it changed

Cal's life in three days.

[Guest guest]

:

I'm so glad you wrote! LDB can be so frustrating, especially when learning how

to manage symptoms with medications. Here are a few things I have learned from

my father's own personal experience:

Risperdal is an EXTREMELY risky drug for patients with Lewy Body. My father was

put on this drug by a geriatric internist in Arizona last winter, even though

the packaging information says specifically not to use it with Parkinson's

patients, or those with Parkinson like symptoms. (Dad's Minnesota neurologist

later told us that this warning was put there because of the danger to those who

might have LBD, not just Parkinsons.) Dad had a terrible reaction to the drug,

instead of being sedated by it, he became extremely agitated, and his

hallucinations increased greatly.

We now have a rule in our family that we insist upon with Dad's care givers at

the nursing home: any neurological medications, including Parkinsons

medications, must be approved by Dad's neurologist, not his regular doctor. The

wrong medication, or even the wrong amount of the right medication, can cause a

lot of damage, and some of it can be irreparable. If your mom doesn't have a

neurologist, you may want to ask for a referral to one. Even though Dad was only

on Risperdal for 2 days, it took several weeks for the after effects to wear

off, and not all the effects went away.

Denial is a natural part of this disease. Remember, what your Mom is

experiencing in her head is very real to her, even though you know these things

are not " right " . So part of her denial may be trying to cover up what she knows

she has forgotten, and part of it may be

that she is experiencing a reality different from yours.

Hang in there, ! Your mom is so lucky to have a daughter like you who cares

and is there for her!

~Kirsten

[Guest guest]

Hi ,

I'm glad you were able to move your mother closer.

From reading your post, it rings familiar to me. It may be that your

mother is getting to the stage where she is going to require more

care/ attention.

It may be that she doesn't remember how to do all of these things

that you are thinking she should be able to do. I saw it with my

dad. The ability to perform these tasks that we take for granted

actually require a thought process to complete a series of steps.

My dad got where he couldn't make cereal for breakfast, couldn't use

his keys, the telephone, remotes and sometimes, even find his way

back to his apartment (from within the building...he never left the

grounds without me). If he couldn't tie his shoes, he would cut off

the extra laces. If his pants were inside out and he couldn't get

his wallet out, he was ready to cut the pocket off. Scissors,

paperclips and rubberbands were some of his favorite tools. Foods

that should be refrigerated were in the dishwasher or cabinets or

drawers. I would set his pills up in the pill boxes, but he couldn't

figure out the day, time or how to open the box.

Where he lived, we started with a " pill service " where they would

come by 3x a day to give him his meds. After a while, I added that

they would make him his breakfast, a sandwich for lunch and see that

he had dinner (he just had to go downstairs..I thought it sounded

easy, but apparently, not). I had been helping with a shower, but

decided to add that too. He always told them he had already taken

it, but I know he couldn't get the water temperature adjusted right.

It's not an easy transition, because usually they do not really think

they need the help, even though they do. He was greatful for

everything that I did, but it got to be just too much to worry about

every single minute of the day. Safety was a concern, especially

when he started leaving the stove on.

Drugs probably will not really resolve these issues or enable her to

maintain her independence. In fact, I can't imagine someone trying

to live on their own while taking antipsychotics. Maybe I've got it

all wrong, but adding more help may be a consideration at some point.

My dad had an adverse reaction to Zyprexa (within a week but stayed

on it for a month), but everyone is different with LBD, so you don't

know how your LO will react.

It usually took some sort of crisis for me to come to the realization

that I need to up the level of care, but that usually is what was

necessary.

I hope you can find the right path for you and your mom. This is not

an easy process to figure out and to find the right resources when

you need them. Prepare yourself and keep strong. Just remember that

she really needs you and is probably as frustrated as you are.

Take care and best wishes.

Daughter of Bill, 91

>

> Hello All

>

> Catching up from Mom's move and ongoing computer problems have had

me

> away from the group for a few months. I have managed to catch some

> postings and wanted to say " , congrats on your official

> engagement! " It is so nice to hear some happy news. Also thank you

> for creating the official LBD chat room where I have been able to

> reconnect with some nice chat people I had met before.

>

> Got mom moved right down the street from me in Jan. to regular

senior

> housing, NOT assisted or NH type. It is so great to be able to go

> there every day to check on her.

>

> I have noticed some changes in mom and I am not sure if they are so

> apparent because I see her more often now or whether she is really

> moving into some new phase. She seems very unmotivated to do

anything.

>

> She does get up and dressed every day. Her place is very tidy but

> although she has no physical disabilities, and has always been a

> meticulous housekeeper, she will not dust or vacuum. She always

says

> she will or she did but then doesn't. She gets very agitated if I

> offer to do it for her. In the last 3 months all of us had had a

> birthday. Mom, myself, my daughter, my sister & her daughter and my

> husband and mom has not acknowleged any of them even by just

> mentioning it. Very out of character. She will no longer go for a

> walk which she did all the time before and she has the most

> ridiculous excuses. She needs constant reminding to pay her bills &

> take her meds. She is argumentative and combative often.

>

> She has been in constant trouble at her new place for blasting her

> TV. She is deaf on one side and, of course, refuses to deal with

> that. We have gone to great lengths to set her up with a cordless

> headset which was a big argument. She now agrees to use it but then

> doesn't and then rants about the #@ & *^@!! neighbors and thin walls.

> Then gets mad at me because she thinks am always on " their " side.

> After weeks of dealing with this we found a way to turn off her TV

> speakers so she will have to use the headset. Now she just keeps

> pushing every button trying to get the sound to come out of the TV.

>

> Last week I went to see her Dr, which is our family Dr, without

her.

> He suggested adding either Zyprexa or Risperdal to her meds.

> Everything I read about both these meds says they are not

recommended

> for dementia patients. Just hoping someone has some experience with

> either of these meds that they can share. Currently mom takes

Aricept

> & Zoloft.

>

> Thanks so much,

> & Ginny now 84 years

>

[Guest guest]

I find it odd that my name is included w/ a couple of meds. LOL

Thanks for the congrats !

I'm glad your mom is living close by now. Some things you wrote rang

some familiar bells w/ my mom... Your mentioning that your mom

wouldn't go out for a walk -- same w/ my mom at one point. She became

frightened, we got companions to take her out for her walks (to the

church or pharmacy) she LOVED to walk around her city.

And I think you've heard that it was the Risperidol that did my mom

in -- that led to her rapid decline. I know everyone is different -

but I think doctors are finding Risperidol less & less appropriate

for LBD. There's a new safety message for Risperidol (as of 10/2006)

http://www.fda.gov/medwatch/safety/2006/oct06.htm for LBD.

I don't think your mom needs anti-psychotics. From your posts, it

sounds she just gets frustrated (e.g. the TV sound, etc.) instead I

would think of creative ways to avoid things that upset her. I agree

with to find more help for your mom. If the ALF cannot provide

the one-on-one help than get her companions, help with medication

management, home health aide to tidy the home, etc. Tell her it's

part of the service provided (even if it isn't)

[Guest guest]

Of course, the crazy part of LBD is the fact that our LO’s react so

differently to different medications. I’ve heard several say a modest dose

of Zyprexa was extremely beneficial to their loved one. It – I believe (at

a ¼ of the recommended lowest dose) – is the straw that broke the camels

back in my Mom’s case. The fallout was nightmarish – it really was the med

that accelerated the gentle downward spiral into a full-force nosedive.

As to your Mom’s changes – it really reminds me of my Mom – way before I

realized that anything was going wrong. It really finally dawned on me that

she’d “unlearned” how to do those basic things – even dialing the phone –

after 40 years as a telephone operator!

When it became obvious that she MUST NOT drive any longer – that’s when she

got REALLY not just MAD – but LIVID. I think that was the one thing that

she equated her independence with – sadly – that had gone quite some time

previously, only she just hadn’t figured it out. Well, I don’t think she

has yet – or likely ever will. Her thinking is just so… - well –

un-logical, un-realistic, un-safe… and, honestly, un-likely to make sense

to anyone – even herself. Heartbreaking!

Anyway – this is a hard part, huh? Okay – they’re all hard parts, but

certain hallmarks are harder to weather than others for some of us, it

seems. Many blessings to you as you seek to make wise decisions.

Dina

Care Manager to Mom, aged 67

dx'd with LBD 10/2006

[Guest guest]

-- don't worry about reposting important information. I WISH I

knew about the psychostimulant option for my mom (although by the time

I got to this board the damage was already done for her, and there was

no going back...)

But post it over & over & over -- especially when something WORKS!! we

NEED to know! And if anyone else out there has similar positive results

with pscyhostimulants please post.

Until you discussed it, I hadn't heard about it myself. (Maybe I missed

it somehow) Post away ! Post away! We're learning so much from your

posts!

[Guest guest]

Sorry I listed you with the drugs! You are so much better than the drugs!

Since I mentioned you in my post I just wanted to make sure it caught your eye.

It worked I guess. Lol

Thanks for the reminder about your mom & risperdal. I remember that now. Do

you know why they prescribed it for your mom? Dr is considering these drugs

because of my moms behavior. Her " frustration " is over the top. She is so

miserable, nasty and combative. Calls the police when we are there trying to

help

her with something. She has hit me a few times. She has no joy. I am trying

to be as creative and helpful as I can but everything upsets her. Sometimes I

think the only way to avoid upsetting her is to stay away from her but that

is impossible. She couldn't be on her own without our help.

She is NOT living at an ALF. It is just a regular senior apt. complex with

40 units. Everyone is on their own although I do see helpers coming and going

sometimes. The perfect solution would be to get helpers for her. They are not

me and maybe she would respond differently. But there is no way in hell she

is going to have strangers coming into her apt. I have offered to get her a

housekeeper and she throws a fit. I offer to clean her place myself and she

goes balistic. The other day I announced that I would vacuum and casually got

the vac out while I was chatting away about something else and she went nuts.

She has no idea that we are the reason she continues to be on her own. She

thinks she is completely taking care of herself and we are just butting in

trying to control her. I am the " frustrated " one. I totally get that it must be

so hard for her to realize that she isn't right and she needs help and to a

certain extent she must give control to helpers. So I try to let her deal with

all that she can without interfering but at some point we, the helpers, must

step in. It is a constant walk over the rice paper or eggshells.

So if you can remember the reason why risperdal was prescribed could you

share that?

Thanks

& Ginny 84 yrs

************************************** See what's free at http://www.aol.com.

[Guest guest]

Hi . I didn't realize how combative your mom can be. Sorry about

that.

<snip>Do you know why they prescribed it for your mom? <snip>

Right before mom went to the hospital to be observed, tested and in

the end received new meds inc. Risperidol... She was in an ALF (not

dementia) and she had the fluctuations, but for the past 2-3 weeks it

was mostly bad days. She called me every morning crying and scared.

She threatened to run away (even packed a bag ready to go.) She said

to her sisters that she just wanted to die. She was hallucinating

some too. And having delusions. She was in near hysterics. And our

daily visits (among myself, my sister, her two sisters) didn't help.

At this point so much had changed from her routine. From moving out

of her condo just three months prior. To losing her beloved dog in

the move. To losing her brother who passed away 5 months earlier and

she was so depressed over that. To not being allowed to smoke in her

ALF room, had to go outside, and her not understanding that she

couldn't smoke indoors only outdoors. To the staff catching her

smoking and my coming in and scolding her. To my brother who hadn't

visited in months, and then visiting for 10 minutes b/c he couldn't

handle it. All of this final broke her and she was in near hysterics.

We finally got to the point that we didn't know what to do -- we

still didn't have a diagnosis. At that time I hadn't even heard the

words 'Lewy Body Dementia'... She just had her big workup in the

dementia unit, but the neurologist wasn't part of the meeting (he was

sick that day) so we were waiting for another appt. to meet with him.

That last day I called the psychiatrist of the team in the dementia

unit and he said that she should go to the hospital to be observed &

tested. We'd finally get answers we thought. Instead another

misdiagnosis (this time Vascular Dementia + severe mood disorder they

said) and then the meds inc. Risperidol that really did her in...

Looking back... her moods were tolerable. She was never combative.

She was upset & sad & depressed & having the delusions/hallucination -

- but not combative, nor acting out in any way. She should never have

been given Risperidone.

Do contact to find out more about those psychostimulants... He

has had such luck with them. His LO, Cal, is a different person now.

You're correct that your mom does need something. Maybe Seroquel

should be tried before any other anti-psychotics.

You have read Dr. Boeve's document? With suggested dosage?

http://www.lewybodydementia.org/Boevelink.php