Re: A question about paranoid and mean behavior

[Guest guest]

Vallarie,

Parkinsons Dementia is LBD. It just means she got Parkinsons before she got

dementia instead of after. It sounds like your MDs haven't done an up dates

lately. But it doesn't matter what they call it, the stress for your family is

the same.

And it really sounds like your Dad needs help. I don't know if that means at

home help or NH help or one of the kids (or more) living with them. I was a

single caregiver and it is exhausting. And I didn't want to put Mom in a nh. I

didn't have the money for at home care. After 3 years I just couldn't keep up

any more.

Mom had extremes in her reactions to meds and I just kept her off them too. Or

if I gave her any, it was so little that she didn't know she was getting any.

Your Mom needs some sypathetic help and it doesn't sound like your Dad can do

that. No matter, your family will need to find a nh eventually, so looking now

before it becomes an emergency will help make it easier later.

Hope your turkey was a good one..

Hugs,

Donna R

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in

a nh.

She was almost 89 when she died in '02. No dx other than mine.

A question about paranoid and mean behavior

Hi Everybody.

My dad and I are still dealing with mom's paranoia and rather mean behavior.

She just called me and told me he was trying to kill her and was putting stuff

in her medicine. He is having a hard time getting her to take anything the

doctor has precribed. She was taking Respiradone (not sure if I am spelling

that right) last week which was prescribed by the psychiatrist. I thought that

was suppose to help the paranoia and agressiveness. She seemed almost her old

self last week but yesterday the evil twin came back and I guess she is still

here. I don't think dad was giving the full dose since it really knocked her

out and maybe that is the problem. Of course now she is so angry with him she

won't take anything. The only thing she will take is her Parkinson medication

which of course has side effects. My question to you all that have gone through

this is, is this a new thing we will be dealing with daily now? It seems like

it comes and goes for several days at a time.

I am trying to get used to this as its new but its really hard when she is

telling me horrible things my dad is doing to her like beating her and threating

to kill her with a gun. I know she is afraid. She saw the psycharitrist a week

ago but got mad and told him she wasn't crazy but everyone else is.

Its a living hell for my dad and I just pray this is something we can get under

control soon. Its so unlike my moms normal personaility.

We have been told my mom does not have LBD but Parkinson Dementia. I don't

really know what the difference is as it seems to me the symptoms seem the same.

Vallerie

[Guest guest]

Hi Donna,

Hmm, I have been doing more research today and it does look like Parkinson's

Dementia does have the Lewy Body involvement. It is so complicated. I

personally wonder if the high doses of Siniment my mom takes is causing much of

the paranoia? We have tried to cut back but then the Parkinson symptons are

unbearable. My dad is pretty informed on Parkinson's Disease but the dementia

symptons recently have become very challenging.

We are going to try and get by with home care instead of a NH. After reading so

much online it just seems like you either spend a pile of money in a NH or you

spend a pile of money keeping them home. I do realize its very hard to get

really good in care help at home and I assume its private pay. However, if mom

ends up in a nursing home it will be private pay anyway as she does not have any

NH insurance. I know Medicare pays for a little while but I assume after that

its either private pay or Medicaid.

Its all very complicated and its taken me time to research. We just got her

into seeing a Psychiatrist that is supposedly experience in dealing with the

mental needs of the elderly. Guess only time will tell if he has any good

advise on coping with the more challenging behavior problems.

I know a NH may be in the not to distance future and it grieves me to even

think about that. However, I am not going to bring mom into my home because I

know I can not emotionally cope with the aggressive behaviors. I do not have

any more brothers or sisters having my only brother die from cancer 13 years

ago. Its just dad and me. I do have a very good husband but he travels a lot

and is very busy with his job so I try not to burden him too much. I also have

two sons, one in high school and the other in Jr high. They love grandma and

its very hard for them to watch her fad. I make sure they see her weekly but

when she is angry and aggressive I keep them away. I think if she were in her

real mind she would want that.

Its a terrible journey we are on but I do count my blessings for the group. You

all have been a weath of infomation to me.

Gentle Hugs

Vallerie

[Guest guest]

Vallerie,

When we were in a similar situation, my mother's doctor reduced the sinimet

dosage, and substituted a low dosage of Requip, which works to enhance the

existing dopamines. My mother couldn't tollerate higher dosages of sinimet,

nor of higher dosages of Requip, but moderate dosages of both seemed to help

for a while.

Dann

Vallerie Edmonds wrote:

[Guest guest]

Dann,

Thanks for the info. We have tried to lower mom's dose. She has stimulators in

her brain which allow for higher doses and we have tried to cut back but when we

do she can not tolerate it. She used to take the other meds that increased the

effectiveness of the Sinimet but the last couple years those medicines made her

very paranoid. I am not familar with Requip so will check into that one.

Sinimet was her lifeline for years but now it seems to be the enemy.

Vallerie

[Guest guest]

Vallerie,

i do belive parkinson dementia is just another term for lbd.

as for the paranoid and aggressiveness, several things could bring these about.

one is an infection usualy uti, which seems to make the evil twins come out of

the woodwork. so you may want to have her checked for that.

anohter is a reaction to the parkinson meds. many of the parkinson meds do

bring out aggression and evil twins out of the woodwrok. my dad had bouts of

severe parkinson isms and we tried sinemet we tgave him two doses of 1/2 the

normal dosage and within an hour of tkaing the meds he was aggressive, paraanoid

hateful everything. he told m ehimslef that hte littleman in his head was

saying bad things, little man in his head is what he called lbd he knew it had

amans name in it. so that was his way i still laugh at it. we stopped the

sinement and it took 48 hours before it seemds to come out of his system

totally.

another trigger could be some change in the house, moving of furniture, too

mcuh company, even tv programs on tv. dad was very much influenced by the tv

he coldnt differentiate between fiction and reality.

a cold starting could also do that. just a few ideas. hope something helps.

hugs, sharon m

---- Vallerie Edmonds wrote:

Hi Everybody.

My dad and I are still dealing with mom's paranoia and rather mean behavior.

She just called me and told me he was trying to kill her and was putting stuff

in her medicine. He is having a hard time getting her to take anything the

doctor has precribed. She was taking Respiradone (not sure if I am spelling

that right) last week which was prescribed by the psychiatrist. I thought that

was suppose to help the paranoia and agressiveness. She seemed almost her old

self last week but yesterday the evil twin came back and I guess she is still

here. I don't think dad was giving the full dose since it really knocked her

out and maybe that is the problem. Of course now she is so angry with him she

won't take anything. The only thing she will take is her Parkinson medication

which of course has side effects. My question to you all that have gone through

this is, is this a new thing we will be dealing with daily now? It seems like

it comes and goes for several days at a time.

I am trying to get used to this as its new but its really hard when she is

telling me horrible things my dad is doing to her like beating her and threating

to kill her with a gun. I know she is afraid. She saw the psycharitrist a week

ago but got mad and told him she wasn't crazy but everyone else is.

Its a living hell for my dad and I just pray this is something we can get under

control soon. Its so unlike my moms normal personaility.

We have been told my mom does not have LBD but Parkinson Dementia. I don't

really know what the difference is as it seems to me the symptoms seem the same.

Vallerie

[Guest guest]

Sharon,

We had her checked out for infections about three weeks ago when the evil twin

came to visit. She didn't have any infection so we had to rule that out. I

personally believe its the high doses of Sinimet that is catching up with her.

She has been on that same drug for many many years. She started taking it when

it first came out in the 1970s. I am really not sure if we can adjust the dose

as she was always very careful to take the smallest she could take all these

years. If she does not get the dose she takes now every three hours her legs

become like iron and her feet turn inside and her feet and legs turn blue. And

in the last year her breathing becomes very shallow almost like an asthma attack

which it is not. Its all related to the Parkinson's Disease. After having it

for 35+years its any wonder she has any brain cells left at all. Over the years

she also developed the wild involuntary movements where she just flails all over

the place. She had stimulators

inserted about three years ago. They help with that problem but of course she

must take the sinimet or that becomes a terrible problem again too.

I am afraid that one medicine will just increase the need of another medicine to

counteract the bad effects. I wish we could just get her off everything but I

am not sure that we can since she is in the advance stages of Parkinsons. Its a

very cruel disease and add LBD it is almost unbearable.

Gentle Hugs

Vallerie

[Guest guest]

Dear Vallerie, I just read your note here to Sharon, and wanted to add to my

earlier comments. Is your mom's daily dose of Sinemet quite high? The literature

says it can cause hallucinations, cognitive decline, etc., along with more

directly-physical side effects. Does the MD who placed the stimulator still see

your mom and is he/she consulted when a new med is started? And has he/she

adjusted this med - as others need to be adjusted - as your mom ages and her

physical-mental conditions change? All things to check out. You are right, these

are horrific diseases. You are being a great daughter, researching and

advocating for your mom, while supporting your dad during what has to be awful

for him, too.

Stay in touch as you can.

Peace, Lin

Sharon,

We had her checked out for infections about three weeks ago when the evil twin

came to visit. She didn't have any infection so we had to rule that out. I

personally believe its the high doses of Sinimet that is catching up with her.

She has been on that same drug for many many years. She started taking it when

it first came out in the 1970s. I am really not sure if we can adjust the dose

as she was always very careful to take the smallest she could take all these

years. If she does not get the dose she takes now every three hours her legs

become like iron and her feet turn inside and her feet and legs turn blue. And

in the last year her breathing becomes very shallow almost like an asthma attack

which it is not. Its all related to the Parkinson's Disease. After having it for

35+years its any wonder she has any brain cells left at all. Over the years she

also developed the wild involuntary movements where she just flails all over the

place. She had stimulators

inserted about three years ago. They help with that problem but of course she

must take the sinimet or that becomes a terrible problem again too.

I am afraid that one medicine will just increase the need of another medicine to

counteract the bad effects. I wish we could just get her off everything but I am

not sure that we can since she is in the advance stages of Parkinsons. Its a

very cruel disease and add LBD it is almost unbearable.

Gentle Hugs

Vallerie

[Guest guest]

Vallerie,

wow, that is a long time on sinemet, and i am thinking you are right it just

might be the sinemet finally catching up with her. unfortuantely. you may have

to just deal with it. we had dad on zoloft 50mg at first, and we gave it at

nite as it made him sleepy, we changed the dose almost 9 months later to 100mg,

and hten about 4 months later to 150 mg. always given at night, this semeed to

help the aggression and helped him sleep as well too. i hope this hhelps, hugs,

sharon. ps if it continues i still would recheck for uti, maybe she was just

starting on one and wasnt sick enough to be diagnosed yet. just a a thought

hugs, s.

---- Vallerie Edmonds wrote:

Sharon,

We had her checked out for infections about three weeks ago when the evil twin

came to visit. She didn't have any infection so we had to rule that out. I

personally believe its the high doses of Sinimet that is catching up with her.

She has been on that same drug for many many years. She started taking it when

it first came out in the 1970s. I am really not sure if we can adjust the dose

as she was always very careful to take the smallest she could take all these

years. If she does not get the dose she takes now every three hours her legs

become like iron and her feet turn inside and her feet and legs turn blue. And

in the last year her breathing becomes very shallow almost like an asthma attack

which it is not. Its all related to the Parkinson's Disease. After having it

for 35+years its any wonder she has any brain cells left at all. Over the years

she also developed the wild involuntary movements where she just flails all over

the place. She had stimulators

inserted about three years ago. They help with that problem but of course she

must take the sinimet or that becomes a terrible problem again too.

I am afraid that one medicine will just increase the need of another medicine to

counteract the bad effects. I wish we could just get her off everything but I

am not sure that we can since she is in the advance stages of Parkinsons. Its a

very cruel disease and add LBD it is almost unbearable.

Gentle Hugs

Vallerie

[Guest guest]

Lin,

Yes, my mom still sees the Nuro group who put in the stimulator's usually about

every 3 or 4 months. She is scheduled to go back in Jan. Usually she is

reprogrammed. She takes very very high doses of Siniment (about 6 times the

normal dose) because of the stimulator's. I sometimes wonder if it was a bad

idea for these to be put in. It seems like most of the bad stuff started to

happen after. Of course it might just also be the age she is and might have

happened anyway.She did have a very big psychological workup before to make sure

she could tolerate them. The stimulator's do a great job of controlling the

dyskenia . Sometimes when she needs reprogramming she will shake for hours and

its terribly hard on her psychically

Sometimes I wonder if any Dr really knows whats going on or really cares. All I

want is my mom to be confortable and safe

Gentle Hugs

Vallerie

[Guest guest]

Dear Vallerie, Of course that's all you want! Me, too, for my mom and all our

LOs. The only way I can get even 50% of the way to keeping my mom safe and

comfortable is via meds. And that is a rough job for any of us. We can only take

the best advice we can get from MDs we trust - and do a a lot of research and

ask others here. I work with docs as part of my job and respect most of them.

But with the best, there are still problems. While PD is pretty well known, LBD

isn't - even by good neuros and psychiatrists. I think they care, but frankly

don't know a lot about this type of dementia. And some of the smartest I've

encountered aren't very interested in the observations of those of us who are

interacting 24-hours-a-day with the patient. Also, they don't know the meds all

that well. They're trained to know what works for what disease, but lack

knowlege of dosages, interactions, timings, etc. Medicine is still generally

taught from the perspective of caring for younger

folks. Even good ones rely a lot on the detailers (marketers) who represent

drug companies. And many have big egos, period. This is why I rely so much on

the geri-pharmacologist I spoke of. This profession DOES know meds! And my

experience is that younger docs are willing to get input from them, but not the

older ones. All that leads me to being fairly " pushy " with the docs. I believe

it means being a strong advocate for my mom. If there's a problem, I won't wait

til the next appointment - I call and call until the MD responds. We can't

annoy them, but we can insist on the best care possible in a very timely manner.

As always, hugs and peace. Lin

Vallerie Edmonds wrote:

Lin,

Yes, my mom still sees the Nuro group who put in the stimulator's usually about

every 3 or 4 months. She is scheduled to go back in Jan. Usually she is

reprogrammed. She takes very very high doses of Siniment (about 6 times the

normal dose) because of the stimulator's. I sometimes wonder if it was a bad

idea for these to be put in. It seems like most of the bad stuff started to

happen after. Of course it might just also be the age she is and might have

happened anyway.She did have a very big psychological workup before to make sure

she could tolerate them. The stimulator's do a great job of controlling the

dyskenia . Sometimes when she needs reprogramming she will shake for hours and

its terribly hard on her psychically

Sometimes I wonder if any Dr really knows whats going on or really cares. All I

want is my mom to be confortable and safe

Gentle Hugs

Vallerie

[Guest guest]

Vallarie,

There has been considerable info that the Parkinson meds and the dementia meds

fight. The balance between the meds need to be found.

Hugs

Donna R

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in

a nh.

She was almost 89 when she died in '02. No dx other than mine.

Re: A question about paranoid and mean behavior

Sharon,

We had her checked out for infections about three weeks ago when the evil twin

came to visit. She didn't have any infection so we had to rule that out. I

personally believe its the high doses of Sinimet that is catching up with her.

She has been on that same drug for many many years. She started taking it when

it first came out in the 1970s. I am really not sure if we can adjust the dose

as she was always very careful to take the smallest she could take all these

years. If she does not get the dose she takes now every three hours her legs

become like iron and her feet turn inside and her feet and legs turn blue. And

in the last year her breathing becomes very shallow almost like an asthma attack

which it is not. Its all related to the Parkinson's Disease. After having it

for 35+years its any wonder she has any brain cells left at all. Over the years

she also developed the wild involuntary movements where she just flails all over

the place. She had stimulators

inserted about three years ago. They help with that problem but of course she

must take the sinimet or that becomes a terrible problem again too.

I am afraid that one medicine will just increase the need of another medicine to

counteract the bad effects. I wish we could just get her off everything but I

am not sure that we can since she is in the advance stages of Parkinsons. Its a

very cruel disease and add LBD it is almost unbearable.

Gentle Hugs

Vallerie

[Guest guest]

Hi Vallerie,

I did this charting with Mom's pills and side effects and thought it

might be something you may want to try. I got the idea from another

caregiver on the LBDA site. This was her story:

PS My Mom got very sick with Resperidal just as your Mom...a few

days she was ok and then she turned into this psychotic person that

was out there. The Doctors insisted I try it twice over the period

of a couple of years. Before I knew about LBD I tried anything they

would suggest hoping it would help. About six months before the LBD

DX I removed the Resperidal and she will never go back on it again.

It is one of the drugs that does not get along with LBD. I am so

sorry to hear about all the trouble with your Mom. I know how

heartbreaking and difficult it is. Stay one step ahead of the

Doctors and don't let them try to intimidate you into trying things

that you know are not good for Mom. If the Doctor won't work with

you, then find a new one. My Mom's Doctor always says we are a team

because I am the one that really knows and sees Mom where, naturally,

she only sees her on short spurts. Just because they have an MD does

not make them the authority on your MOM....

My best,

Carol Incognito

PS This is her story: Please pay special attention to the end about

charting and side effects:

We all know that meds have side effects. Here is my story of LBD and

side effects of a couple, perhaps with some tips to assist you in

sorting through the tangled medication maze.

Actually I have some really good news, my husband is getting better.

A side effect for the medication for drooling (Trihexane) was

building up in his system, and making him very aggressive, they took

him off it, and his drooling is almost not noticable now!! and on the

most part he is quite pleasant to be around. More good news, as a

result of the drs finding that medications build up in his system, we

were able to get him off Diltiazem for his " High Blood Pressure "

Before mentioning all the side affects of Diltiazem with the Dr. I

inquired of the nursing staff at the assited living facility what his

blood pressures had been for last two months, then I plotted them on

a graph and calculated the average so Dr. wouldn't have to spend his

valuable time at the calculator, and presented the graph and list of

side effects highlighted to the Dr. and asked him if it might be

possible to take him off the Diltiazem, and see if perhaps some of

these side effects might be related to Diltiazem, and due to the fact

that his BP was on the average in the low 130's over 80's he agreed

to try it. Daily monitoring of BP was done for a week after, and then

just weekly since. After about 5 weeks he is doing better physically,

emotionally and mentally. We went through a short period of a couple

weeks where he was taking tumbles, but always landed gently, now

after about 3 weeks of physical therapy he is walking better. I

attribute the tumbles (but have no proof of this) to his legs and

feet getting all tangled up especially when trying to turn, and with

his body getting rid of the Diltiazem, his body needed to learn how

to walk again, without the Diltiazem in his system. Note: Some of the

side effects of Diltiazem are:altered way of walking, joint pain,

hallucinations, abnormal dreams, ankle swelling, arrhythmia,

depression, difficulty sleeping, excessive urination at night, muscle

cramps, tremor, and there are other side effects than what I have

mentioned. AND a possible symptom of overdose can be fainting there

are other symptoms of overdose as well (an overdose can be caused by

a buildup of med in the body, and/or by taking 2-3 pills in 24 hours

when only one pill should be taken) After a couple of weeks being off

Diltiazem, I noticed that his color has returned to his face, he is

looking so much better. The occassional tremors he had previously

experienced are basically gone.

You might be surprised what side effects may be caused by meds. You

might want to check out healthsquare.com, and do searches on the

internet for the meds your LO is on. It helps to find more than one

list of side effects, as some times some side effects are omitted on

one list and present on another. The overdose of Diltiazem and

fainting really caught my attention, and was not listed on all web

sites I checked out, so do some research. I hope you will find a Dr.

that will listen to what you have to say. If high BP is present in

your LO, you may want to inquire about the possibility of switching

to a different med, but as always with LBD patients, run all med

changes by the neurologist. Keep in mind that some meds need to be

tapered off slowly. You can't stop some meds cold turkey without

possible harm or death to patient. AGAIN and I cant stress this high

enough all med changes should be run by the doctors.

You may want to consider doing a spread sheet listing all the health

related issues in the first column on left then put the meds your LO

is taking at the top of each column to the right, then put X marks

under each medication when it has a side effect listed that your LO

has, you might be surprised to find a med that has many side effects

that your loved one has developed... Then do your homework and

approach your Dr. gently. One other suggestion is that you keep your

spread sheet at home when you approach the doctors as it might not be

received in a positive manner.

[Guest guest]

Donna,

I truly believe the Parkinson meds are causing a lot of the trouble. Although

her Parkinson meds have not changed in several years she is older, frailer and

more depressed than ever. We need to find a balance.

Hugs

Vallerie

[Guest guest]

Hi Vallarie,

Your email made me think of something regarding taking pills. For a while

there, we would give mom her meals with her meals and after a while you would

here a sound like " tink " , " tink " and I couldn't figure it out. Then sometimes I

would find her pills on the floor or wedged in the sofa - was someone else

giving mom meds or spilling them? I soon figured out that mom was tossing her

pills when I saw her toss them over her shoulder. I then got a pill crusher (or

you can crush them between two spoons) and gave them to her in her food or mixed

in with jam.

This may help to make sure she gets a proper dose so that you can monitor her

symptoms.

Best,

Courage

[Guest guest]

Hi Courage,

Its amazing how creative our LOs are when they don't want to do something. I

sometimes find Parkinson's meds in the carpet or on the floor as mom will

sometimes drop them. The pills are very small and sometimes I think she misses

them. She is usually pretty good about taking the Parkinson's med because she

really gets down if she doesn't get her dose and its very uncomfortable for her.

She did not like to take the Seroquel since it made her so sleepy.

Crushing in the food is a very good idea. Someone suggested adding medication to

icecream which is a good idea too. Everyone likes icecream.

Hugs

Vallerie

[Guest guest]

Hi Vallerie,

I'm not sure you received this post so I am resending it. The

charting of meds and side effects help me.

Carol

>

> Hi Vallerie,

> I did this charting with Mom's pills and side effects and thought

it

> might be something you may want to try. I got the idea from

another

> caregiver on the LBDA site. This was her story:

> PS My Mom got very sick with Resperidal just as your Mom...a few

> days she was ok and then she turned into this psychotic person that

> was out there. The Doctors insisted I try it twice over the period

> of a couple of years. Before I knew about LBD I tried anything

they

> would suggest hoping it would help. About six months before the

LBD

> DX I removed the Resperidal and she will never go back on it

again.

> It is one of the drugs that does not get along with LBD. I am so

> sorry to hear about all the trouble with your Mom. I know how

> heartbreaking and difficult it is. Stay one step ahead of the

> Doctors and don't let them try to intimidate you into trying things

> that you know are not good for Mom. If the Doctor won't work with

> you, then find a new one. My Mom's Doctor always says we are a

team

> because I am the one that really knows and sees Mom where,

naturally,

> she only sees her on short spurts. Just because they have an MD

does

> not make them the authority on your MOM....

> My best,

> Carol Incognito

>

> PS This is her story: Please pay special attention to the end about

> charting and side effects:

>

>

>

> We all know that meds have side effects. Here is my story of LBD

and

> side effects of a couple, perhaps with some tips to assist you in

> sorting through the tangled medication maze.

>

> Actually I have some really good news, my husband is getting

better.

> A side effect for the medication for drooling (Trihexane) was

> building up in his system, and making him very aggressive, they

took

> him off it, and his drooling is almost not noticable now!! and on

the

> most part he is quite pleasant to be around. More good news, as a

> result of the drs finding that medications build up in his system,

we

> were able to get him off Diltiazem for his " High Blood Pressure "

> Before mentioning all the side affects of Diltiazem with the Dr. I

> inquired of the nursing staff at the assited living facility what

his

> blood pressures had been for last two months, then I plotted them

on

> a graph and calculated the average so Dr. wouldn't have to spend

his

> valuable time at the calculator, and presented the graph and list

of

> side effects highlighted to the Dr. and asked him if it might be

> possible to take him off the Diltiazem, and see if perhaps some of

> these side effects might be related to Diltiazem, and due to the

fact

> that his BP was on the average in the low 130's over 80's he agreed

> to try it. Daily monitoring of BP was done for a week after, and

then

> just weekly since. After about 5 weeks he is doing better

physically,

> emotionally and mentally. We went through a short period of a

couple

> weeks where he was taking tumbles, but always landed gently, now

> after about 3 weeks of physical therapy he is walking better. I

> attribute the tumbles (but have no proof of this) to his legs and

> feet getting all tangled up especially when trying to turn, and

with

> his body getting rid of the Diltiazem, his body needed to learn how

> to walk again, without the Diltiazem in his system. Note: Some of

the

> side effects of Diltiazem are:altered way of walking, joint pain,

> hallucinations, abnormal dreams, ankle swelling, arrhythmia,

> depression, difficulty sleeping, excessive urination at night,

muscle

> cramps, tremor, and there are other side effects than what I have

> mentioned. AND a possible symptom of overdose can be fainting there

> are other symptoms of overdose as well (an overdose can be caused

by

> a buildup of med in the body, and/or by taking 2-3 pills in 24

hours

> when only one pill should be taken) After a couple of weeks being

off

> Diltiazem, I noticed that his color has returned to his face, he is

> looking so much better. The occassional tremors he had previously

> experienced are basically gone.

> You might be surprised what side effects may be caused by meds. You

> might want to check out healthsquare.com, and do searches on the

> internet for the meds your LO is on. It helps to find more than one

> list of side effects, as some times some side effects are omitted

on

> one list and present on another. The overdose of Diltiazem and

> fainting really caught my attention, and was not listed on all web

> sites I checked out, so do some research. I hope you will find a

Dr.

> that will listen to what you have to say. If high BP is present in

> your LO, you may want to inquire about the possibility of switching

> to a different med, but as always with LBD patients, run all med

> changes by the neurologist. Keep in mind that some meds need to be

> tapered off slowly. You can't stop some meds cold turkey without

> possible harm or death to patient. AGAIN and I cant stress this

high

> enough all med changes should be run by the doctors.

>

> You may want to consider doing a spread sheet listing all the

health

> related issues in the first column on left then put the meds your

LO

> is taking at the top of each column to the right, then put X marks

> under each medication when it has a side effect listed that your LO

> has, you might be surprised to find a med that has many side

effects

> that your loved one has developed... Then do your homework and

> approach your Dr. gently. One other suggestion is that you keep

your

> spread sheet at home when you approach the doctors as it might not

be

> received in a positive manner.

>

[Guest guest]

Dad was on Rispiridol for hallucinations and paranoia for a while when

he was still at home - now they've switched him to Seroquel. Any anti

psychotic takes a while to " kick in " and we were having trouble

getting Dad to take his. So, we'd crush it and put it in ice cream or

pudding. Worked pretty well.

Diane

>

> Hi Everybody.

> My dad and I are still dealing with mom's paranoia and rather mean

behavior. She just called me and told me he was trying to kill her

and was putting stuff in her medicine. He is having a hard time

getting her to take anything the doctor has precribed. She was taking

Respiradone (not sure if I am spelling that right) last week which was

prescribed by the psychiatrist. I thought that was suppose to help

the paranoia and agressiveness. She seemed almost her old self last

week but yesterday the evil twin came back and I guess she is still

here. I don't think dad was giving the full dose since it really

knocked her out and maybe that is the problem. Of course now she is

so angry with him she won't take anything. The only thing she will

take is her Parkinson medication which of course has side effects. My

question to you all that have gone through this is, is this a new

thing we will be dealing with daily now? It seems like it comes and

goes for several days at a time.

> I am trying to get used to this as its new but its really hard

when she is telling me horrible things my dad is doing to her like

beating her and threating to kill her with a gun. I know she is

afraid. She saw the psycharitrist a week ago but got mad and told him

she wasn't crazy but everyone else is.

> Its a living hell for my dad and I just pray this is something we

can get under control soon. Its so unlike my moms normal personaility.

> We have been told my mom does not have LBD but Parkinson Dementia.

I don't really know what the difference is as it seems to me the

symptoms seem the same.

> Vallerie

>

>

>

[Guest guest]

I went with my parents to the Psychiatrist today. Moms behavior is just

psychotic. She is hearing voices, seeing people in the house (or family members

who are living in other states, and thinking my dad is trying to kill her. This

has been going on for about a month. After doing a lot of reading and research

I was thinking that the high doses of Sinimet my mom must take to control the

Parkinson's Disease might be causing a lot of the problems now that she is so

much older. We left my dad in the waiting room and I went back with mom. She

doesn't get as agitated with me. I asked the doctor if he though that could be

some of the problem and he said he felt it was probably most of the problem. He

feels she is getting way too much dopamine to her brain and it causes a medicine

induced psychosis. He said it was one of the very bad side effects of Sinimet

and its a very fine balancing act to not overdose a long term Parkinsons suffer.

I also asked him if he thought she

had Lewy Body (I didnt' say Dementia because that upsets my mom) and he said he

really didn't feel that she did. Our Nuro group says the same thing. I just

don't know. I did tell him she did not do well on the Respirdal and we are

starting a very small dose of another antipsychotic which at this moment the

name escapes me. She will also continue to take her small dose of Seroquel. He

did say the new medicine can cause agitation in some people so we will watch

very carefully and discontinue if she doesn't get any better or gets worse. I

am going up to Cincinnati next week for moms neurology appointment and we are

also going to discus trying to reduce the amount of Sinimet moms takes. Maybe

cutting back on the fast acting and trying more of the slow release.

Dad had discontinued the Respirdal this weekend and today she wasn't as crazy.

She even told the doctor she was feeling very afraid and anxious and and lately

had been so afraid that her husband was trying to do her in. Then she said she

knew that couldn't be right because he was a wonderful person but she just

couldn't get it out of her mind and she felt like she had to fight.

Its been a roller coaster ride the last month. I sure hope we can get mom

stablized soon. I wish she didn't need the Sinimet.

Vallerie

[Guest guest]

Vallerie,

I'm sure you will see a big difference when you get her off the

Resperidal. It is a horrible drug for the elderly...

Diane

>

> I went with my parents to the Psychiatrist today. Moms behavior is

just psychotic. She is hearing voices, seeing people in the house

(or family members who are living in other states, and thinking my

dad is trying to kill her. This has been going on for about a

month. After doing a lot of reading and research I was thinking that

the high doses of Sinimet my mom must take to control the Parkinson's

Disease might be causing a lot of the problems now that she is so

much older. We left my dad in the waiting room and I went back with

mom. She doesn't get as agitated with me. I asked the doctor if he

though that could be some of the problem and he said he felt it was

probably most of the problem. He feels she is getting way too much

dopamine to her brain and it causes a medicine induced psychosis. He

said it was one of the very bad side effects of Sinimet and its a

very fine balancing act to not overdose a long term Parkinsons

suffer. I also asked him if he thought she

> had Lewy Body (I didnt' say Dementia because that upsets my mom)

and he said he really didn't feel that she did. Our Nuro group says

the same thing. I just don't know. I did tell him she did not do

well on the Respirdal and we are starting a very small dose of

another antipsychotic which at this moment the name escapes me. She

will also continue to take her small dose of Seroquel. He did say

the new medicine can cause agitation in some people so we will watch

very carefully and discontinue if she doesn't get any better or gets

worse. I am going up to Cincinnati next week for moms neurology

appointment and we are also going to discus trying to reduce the

amount of Sinimet moms takes. Maybe cutting back on the fast acting

and trying more of the slow release.

>

> Dad had discontinued the Respirdal this weekend and today she

wasn't as crazy. She even told the doctor she was feeling very

afraid and anxious and and lately had been so afraid that her

husband was trying to do her in. Then she said she knew that

couldn't be right because he was a wonderful person but she just

couldn't get it out of her mind and she felt like she had to fight.

>

> Its been a roller coaster ride the last month. I sure hope we can

get mom stablized soon. I wish she didn't need the Sinimet.

> Vallerie

>

>

>

[Guest guest]

Vallerie: It will be interesting to see if the new

antipsychotic drug will cause her problems. You can

bet that if it does, she may have LBD. Between

Respridol, the new one, and Seroquel, those are all

neuroleptics. My husband did not do well with any of

them: Geodun, Abillify, Respridol, Seroquel, and I

think some others they tried. I hope they will watch

her carefully, and if you notice anything aout the new

one, let them know right away.

Good luck.

--- " carol.incognito "

wrote:

> Vallerie,

> I'm sure you will see a big difference when you get

> her off the

> Resperidal. It is a horrible drug for the

> elderly...

> Diane

>

>

> >

> > I went with my parents to the Psychiatrist today.

> Moms behavior is

> just psychotic. She is hearing voices, seeing

> people in the house

> (or family members who are living in other states,

> and thinking my

> dad is trying to kill her. This has been going on

> for about a

> month. After doing a lot of reading and research I

> was thinking that

> the high doses of Sinimet my mom must take to

> control the Parkinson's

> Disease might be causing a lot of the problems now

> that she is so

> much older. We left my dad in the waiting room and

> I went back with

> mom. She doesn't get as agitated with me. I asked

> the doctor if he

> though that could be some of the problem and he said

> he felt it was

> probably most of the problem. He feels she is

> getting way too much

> dopamine to her brain and it causes a medicine

> induced psychosis. He

> said it was one of the very bad side effects of

> Sinimet and its a

> very fine balancing act to not overdose a long term

> Parkinsons

> suffer. I also asked him if he thought she

> > had Lewy Body (I didnt' say Dementia because that

> upsets my mom)

> and he said he really didn't feel that she did. Our

> Nuro group says

> the same thing. I just don't know. I did tell him

> she did not do

> well on the Respirdal and we are starting a very

> small dose of

> another antipsychotic which at this moment the name

> escapes me. She

> will also continue to take her small dose of

> Seroquel. He did say

> the new medicine can cause agitation in some people

> so we will watch

> very carefully and discontinue if she doesn't get

> any better or gets

> worse. I am going up to Cincinnati next week for

> moms neurology

> appointment and we are also going to discus trying

> to reduce the

> amount of Sinimet moms takes. Maybe cutting back on

> the fast acting

> and trying more of the slow release.

> >

> > Dad had discontinued the Respirdal this weekend

> and today she

> wasn't as crazy. She even told the doctor she was

> feeling very

> afraid and anxious and and lately had been so

> afraid that her

> husband was trying to do her in. Then she said she

> knew that

> couldn't be right because he was a wonderful person

> but she just

> couldn't get it out of her mind and she felt like

> she had to fight.

> >

> > Its been a roller coaster ride the last month. I

> sure hope we can

> get mom stablized soon. I wish she didn't need the

> Sinimet.

> > Vallerie

> >

> >

> > [Non-text portions of this message have been

> removed]

> >

>

>

>

________________________________________________________________________________\

____

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[Guest guest]

Hello All,

My father has been having terrible hallucinations and delusions for over a

year now...he only takes Exelon 4.5 mg in the a.m. and 50 mg of seroquel at

night, besides some other meds for his COPD and meds to help him with his

constipation. I'm getting to the point where I cannot handle all the

hallucinations and behavior that comes along with it, I'm desperately seeking to

see if anyone has had any luck with any type of drugs to help with the

hallucinations, not only are they scary for him, but he smells them, and most of

the time he tells me that it is a terrible smell that he smells. My heart is

bleeding for my Dad, if there were only a drug that we could give him to help

him rid of these hallucinations, it's making him so paranoid that I'm not sure

how much longer I can deal with it. I'm afraid for him, he gets so worked up

that he starts breathing so heavily, nothing helps to calm him down, it's like I

have to wait for the episode to pass. This is such a

frustrating disease !!

" carol.incognito " wrote:

Vallerie,

I'm sure you will see a big difference when you get her off the

Resperidal. It is a horrible drug for the elderly...

Diane

>

> I went with my parents to the Psychiatrist today. Moms behavior is

just psychotic. She is hearing voices, seeing people in the house

(or family members who are living in other states, and thinking my

dad is trying to kill her. This has been going on for about a

month. After doing a lot of reading and research I was thinking that

the high doses of Sinimet my mom must take to control the Parkinson's

Disease might be causing a lot of the problems now that she is so

much older. We left my dad in the waiting room and I went back with

mom. She doesn't get as agitated with me. I asked the doctor if he

though that could be some of the problem and he said he felt it was

probably most of the problem. He feels she is getting way too much

dopamine to her brain and it causes a medicine induced psychosis. He

said it was one of the very bad side effects of Sinimet and its a

very fine balancing act to not overdose a long term Parkinsons

suffer. I also asked him if he thought she

> had Lewy Body (I didnt' say Dementia because that upsets my mom)

and he said he really didn't feel that she did. Our Nuro group says

the same thing. I just don't know. I did tell him she did not do

well on the Respirdal and we are starting a very small dose of

another antipsychotic which at this moment the name escapes me. She

will also continue to take her small dose of Seroquel. He did say

the new medicine can cause agitation in some people so we will watch

very carefully and discontinue if she doesn't get any better or gets

worse. I am going up to Cincinnati next week for moms neurology

appointment and we are also going to discus trying to reduce the

amount of Sinimet moms takes. Maybe cutting back on the fast acting

and trying more of the slow release.

>

> Dad had discontinued the Respirdal this weekend and today she

wasn't as crazy. She even told the doctor she was feeling very

afraid and anxious and and lately had been so afraid that her

husband was trying to do her in. Then she said she knew that

couldn't be right because he was a wonderful person but she just

couldn't get it out of her mind and she felt like she had to fight.

>

> Its been a roller coaster ride the last month. I sure hope we can

get mom stablized soon. I wish she didn't need the Sinimet.

> Vallerie

>

>

>

[Guest guest]

>

> Hello All,

> My father has been having terrible hallucinations and delusions

for over a year now...he only takes Exelon 4.5 mg in the a.m. and 50

mg of seroquel at night, besides some other meds for his COPD and

meds to help him with his constipation. I'm getting to the point

where I cannot handle all the hallucinations and behavior that comes

along with it, I'm desperately seeking to see if anyone has had any

luck with any type of drugs to help with the hallucinations, not only

are they scary for him, but he smells them, and most of the time he

tells me that it is a terrible smell that he smells. My heart is

bleeding for my Dad, if there were only a drug that we could give him

to help him rid of these hallucinations, it's making him so paranoid

that I'm not sure how much longer I can deal with it. I'm afraid for

him, he gets so worked up that he starts breathing so heavily,

nothing helps to calm him down, it's like I have to wait for the

episode to pass. This is such a

> frustrating disease !!

Hi Joni,

I am so sorry to hear about your Dad's hallucinations. It must be so

horrible for him and for you.

What does his Doctor say about this? Does he want to up his

Seroquel? I know the lecture that and I attended a few

weeks back the doctor was totally against anti-psychotics except for

extreme cases and then very tiny amounts. But, what do you do when

you are having hallucinations like Dad's? I'm afraid I don't have

the answer, but I would be on the phone to the Doctor immediately and

haunting him until I got an answer. lol

My Mom has hallucinations every day but they aren't scary like your

Dad's. She sees the animals, babies, people, and bugs. Right now

she doesn't take anything for them and she is not afraid. She just

thinks it happens when she doesn't get enough sleep; which is partly

true. When she doesn't sleep well is when she will have a tendency

to hallucinate.

My best to you,

Carol Incognito

>

>

[Guest guest]

joni

your father seems to be on a low dose of exelon, exelon can be take 2 times a

time and i belive that highest mg is 6, but you have to work up to it slowly,

it took dad almost 6or 7 months to get to the max dose of 6mg 2 times a day, he

starte out with one 1.5 a day, for 4 weeks then2 times a day, then went to 3

mg once a day with 1.5 nite, thn 3.mg 2 times a day,thn 4.5 once a day and 3mg

once a day, then 4.5 twice a day, the 6 mg once a dya 4.5 once a day and then

finally 6 mg 2 times a day. he was on eachadition for 4 weeks before the other

dose was raised. he did that for about 6 months and then theidea was to add

namenda as well. dad progression of the disease was signicatlly slowed with

exelon, you cant regan what is lost, the idea is to slow down the progreesion of

the disease.

hope this helps. hugs, sharon m

---- Joni Henry wrote:

Hello All,

My father has been having terrible hallucinations and delusions for over a

year now...he only takes Exelon 4.5 mg in the a.m. and 50 mg of seroquel at

night, besides some other meds for his COPD and meds to help him with his

constipation. I'm getting to the point where I cannot handle all the

hallucinations and behavior that comes along with it, I'm desperately seeking to

see if anyone has had any luck with any type of drugs to help with the

hallucinations, not only are they scary for him, but he smells them, and most of

the time he tells me that it is a terrible smell that he smells. My heart is

bleeding for my Dad, if there were only a drug that we could give him to help

him rid of these hallucinations, it's making him so paranoid that I'm not sure

how much longer I can deal with it. I'm afraid for him, he gets so worked up

that he starts breathing so heavily, nothing helps to calm him down, it's like I

have to wait for the episode to pass. This is such a

frustrating disease !!

" carol.incognito " wrote:

Vallerie,

I'm sure you will see a big difference when you get her off the

Resperidal. It is a horrible drug for the elderly...

Diane

>

> I went with my parents to the Psychiatrist today. Moms behavior is

just psychotic. She is hearing voices, seeing people in the house

(or family members who are living in other states, and thinking my

dad is trying to kill her. This has been going on for about a

month. After doing a lot of reading and research I was thinking that

the high doses of Sinimet my mom must take to control the Parkinson's

Disease might be causing a lot of the problems now that she is so

much older. We left my dad in the waiting room and I went back with

mom. She doesn't get as agitated with me. I asked the doctor if he

though that could be some of the problem and he said he felt it was

probably most of the problem. He feels she is getting way too much

dopamine to her brain and it causes a medicine induced psychosis. He

said it was one of the very bad side effects of Sinimet and its a

very fine balancing act to not overdose a long term Parkinsons

suffer. I also asked him if he thought she

> had Lewy Body (I didnt' say Dementia because that upsets my mom)

and he said he really didn't feel that she did. Our Nuro group says

the same thing. I just don't know. I did tell him she did not do

well on the Respirdal and we are starting a very small dose of

another antipsychotic which at this moment the name escapes me. She

will also continue to take her small dose of Seroquel. He did say

the new medicine can cause agitation in some people so we will watch

very carefully and discontinue if she doesn't get any better or gets

worse. I am going up to Cincinnati next week for moms neurology

appointment and we are also going to discus trying to reduce the

amount of Sinimet moms takes. Maybe cutting back on the fast acting

and trying more of the slow release.

>

> Dad had discontinued the Respirdal this weekend and today she

wasn't as crazy. She even told the doctor she was feeling very

afraid and anxious and and lately had been so afraid that her

husband was trying to do her in. Then she said she knew that

couldn't be right because he was a wonderful person but she just

couldn't get it out of her mind and she felt like she had to fight.

>

> Its been a roller coaster ride the last month. I sure hope we can

get mom stablized soon. I wish she didn't need the Sinimet.

> Vallerie

>

>

>

[Guest guest]

Hi Joni,

My mom also had terrible anxiety and I used to split her seroquel dose rather

than the full dose at any one time- half in the late morning and the rest in the

evening. It seemed to help most of the time but not always. I also used to

give her valerian drops and they too worked some of the time. Its hard enough

coping with this disease but when you have a loved one who has bad

anxiety/terrors it makes it all the harder because you don't know what to do.

Best to you and your dad,

Courage

[Guest guest]

Courage,

I know exactly what you mean, at this point, I'm not sure what is worst..the

hallucinations and delusions are far more difficult to deal with than anything

else that we are dealing with this terrible disease...I'm learning to take it

one day at a time and just savior the good ones.

Thank you.

Joni

gaat17 wrote:

Hi Joni,

My mom also had terrible anxiety and I used to split her seroquel dose rather

than the full dose at any one time- half in the late morning and the rest in the

evening. It seemed to help most of the time but not always. I also used to give

her valerian drops and they too worked some of the time. Its hard enough coping

with this disease but when you have a loved one who has bad anxiety/terrors it

makes it all the harder because you don't know what to do.

Best to you and your dad,

Courage