Re: Hi! I'm new here ...

[Guest guest]

In a message dated 9/21/2002 2:47:35 PM Central Daylight Time, bhardy@...

writes:

> The drugs that are dangerous for LBD are the

> anti-psycotic drugs, my husband was put on one and ended up in the

> hospital.

Barb, would you remind me one more time is seroquel traditionally a " good "

drug for LBD or a " bad " one. I know that each case is different. One moment

I'm comforted by the fact that it is the drug of choice and then I see it on

a list as being a neuroleptic. I " m confused. Kathie/Kate

[Guest guest]

>Hi everyone! I'm new here and am searching for any and all info I

>can find. My step-dad was just diagnosed a week ago as having LBD.

>Prior to the neurologist giving this diagnosis, no one in my family

>had ever heard of it.

Peggy I am glad that you found this site and I just want to welcome

you for now. You will find a lot of answers and support here. My

husband,76, was diagnosed with LBD a short time ago and has just

started a new drug. The drugs that are dangerous for LBD are the

anti-psycotic drugs, my husband was put on one and ended up in the

hospital. Some of the newer anti-psycotic drugs though are helping

some of the LO's (loved ones) here. Nothing seems to work the same

for everyone. I hope your step father is in a good nh, there are

some good ones out there, and if he doesn't improve and has to stay

in that enviroment that your mother will be able to accept it. Again

welcome and I am sure I will have more to say later. God Bless Barb

[Guest guest]

Hello!

The seroquel is helping my Mom now, hopefully it's a good one. With the LBD you

never know what is good and what is bad, everything works so differently with

each individual.

My hugs and thoughts are with you,

[Guest guest]

Peggy, sorry to hear about your dad, it sounds a lot like my mom's

situation. The fact that your dad had open heart surgery makes it seem so

much more unfair. My mom fell and had to have hip replacement surgery last

Friday. How much do they have to suffer, just doesn't seem fair. The drug

you mentioned Seroquel is the one they gave my mom in the beginning too but

now she just takes Risperadol. Different people react differently to

different medications. Good luck, at least you will get the support and

understanding you need here and a chance to vent, wishing your Dad and your

family well, Shirley

>

>Reply-To: LBDcaregivers

>To: LBDcaregivers

>Subject: Hi! I'm new here ...

>Date: Sat, 21 Sep 2002 18:36:18 -0000

>

>Hi everyone! I'm new here and am searching for any and all info I

>can find. My step-dad was just diagnosed a week ago as having LBD.

>Prior to the neurologist giving this diagnosis, no one in my family

>had ever heard of it. Let me give a brief history .. my step-dad is

>75 years old. Five years ago, he was treated for spinal menigistis

>and enchyphalitis. Over time, he started developing some memory loss

>symptoms common with elderly dementia. He was prescribed Aricept. A

>little over a year ago, he was diagnosed as having Parkingsonism and

>given medicine for that. I believe my mom said he was taking Cynamet

>(sp?) for the Parkingsonism symptoms. He would has had the

>shuffling gait for a year or so now, some very slight trembling at

>times and the falls and freeze ups from time to time. He experienced

>some mild hallucinations, seeing people that weren't there, etc, but

>mostly his meds keep this down. His dementia has progress slowly

>over the past 2-3 or more years. Then on Sept. 5, he had open heart

>double by-pass surgery. Currently he is recovering nicely

>physically from the heart surgery but ... his memory loss has

>excelled, his hallucinations have been extremely exagerated, his

>confusion extreme at times and he has to be queued for most things.

>These extreme conditions came about after the surgery. We were told

>that sometimes it takes awhile for all the meds from surgery to wear

>off, however, surgery was just over two weeks ago. He has had some

>very good days, but never whole days. He can appear very lucid one

>minute and two hours later be seeing guys hanging from ropes on his

>hospital room wall. My mom, who is 73 years old, is the only person

>available to care for him and cannot do so alone. Mentally she is a

>very anxious, nervous, someone depressed person with a bad back. In

>home nursing care would be too vague in my step-dad's current

>condition. He has made his progress from ICU to Step-down and then

>Skilled Nursing as a result of his open heart surgery, but now, next

>week we are moving him to a nursing home facility for more skilled

>care. We, currently are moving him as a short term patient needing

>more skilled care. We will take each day as it comes to see what

>progress is made. Meanwhile, the neurologist has been in to see him

>3 times and was there on one of his bad days. This is when he gave

>the diagnosis of LBD. This is all so new to us. And I've read some

>of the posts here and viewed many sites about Lewy Body and it's

>rather frightening to say the least. I see so often all these

>complications about giving the wrong meds and nursing homes being

>totally unaware of this disease and how it affects everything. I

>will continue to hang out here and read all that I can so I can

>better guide and inform my mother. She is beside herself for even

>having to put him in a nursing home and now wishes they had never

>consented to the heart surgery. But, we can't go back, so now we

>must go forward and gather what we can for his benefit. So, any and

>all info any of you can throw my way, just start throwing. I am as

>naive and dumb to this disease as the next person and know that we

>can not continue to walk through this blind.

>

>Things I wonder about are .. what meds are best? (currently they

>have him on Exelon) Is there known facts supporting that the

>surgerical procedure could have enhanced his condition? Is it

>possible that it could get better? How well can his conditions be

>controlled with meds? What are the stages, if any, as far as

>severity?

>

>I'm sure I'll come up with more as time goes by, but for now, I just

>wanted to get my foot in the door and get myself and our situation

>introduced.

>

>Again, Hi to all and please feel free to share whatever you can with

>me.

>God bless you all,

>Peggy

>

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[Guest guest]

Peggy

Welcome to a group where experiences are valid and caring for others is

beyond love itself.

In answer to some of your questions, this is a neurological degenerative

disease taking on characteristics of Alzheimer's and Parkinson's all in

one person. Every thing you described best tells the story.

Unfortunately there is no real time line to follow and no book to read

for future knowledge. Each person has so many similarities, yet so

different. I found with my dad when he had a mild heart attack and

angio-plasty 6 yrs ago his disease progressed very quickly as well. To

our knowledge the progression rate is quicker than Alzheimer's (AD) and

as you said medications can be hard to figure out. Exelon is a good

med. and hopefully your step-dad is able to tolerate it. My dad did

much better on it and for quite a while.

Other than that, please continue to ask questions and vent as needed.

Many people in this group have " been there, done that " at some point or

another and are willing to help in all aspects necessary.

I would suggest to keep prayer as a priority and there you will find

strength, knowledge, and courage to face all that will come your way.

You are added to my growing prayer list and find peace in knowing you

are not alone.

God Bless~

Sandie

Des Moines, IA

[Guest guest]

>Barb, would you remind me one more time is seroquel traditionally

>a " good " drug for LBD or a " bad " one. I know that each case is

>different. One moment I'm comforted by the fact that it is the drug

>of choice and then I see it on a list as being a neuroleptic. I " m

>confused.

Kathie/Kate From what I have been reading is that the newer

antipsychotic/neuroleptic drugs do work for some LBD'ers. Seroquel is

an antipsychotic drug but is one of the newer ones, several people in

this site and the caringspouses site have LO's that are doing well on

it. The antipsychotic drug that put my husband in the hospital was

Risperdal, and there are several people on the two sites that are

doing okay with that. It is real hard to say how any one person is

going to react to a drug. Bill started on Aricept on 9/11 (won't

forget that date) it is not a antipsychotic but is used for

Alzheimers. The last two nights he has slept good and the

hallucinations are not as bad but we don't know if it is the drug

yet. Have thought of asking his doctor about Seroquel as several

people said their LO's started sleeping better after they started

it. From what I have heard some of these drugs can take a long time

to get full benfits from them.

So it just depends what you LO can tolerate, I do know that if they

put Bill back on a antipsychotic I will insist that he be in the

hospital so they can keep a close eye on him. How are you guys

doing? Barb

[Guest guest]

>Barb, would you remind me one more time is seroquel traditionally

>a " good " drug for LBD or a " bad " one. I know that each case is

>different. One moment I'm comforted by the fact that it is the drug

>of choice and then I see it on a list as being a neuroleptic. I " m

>confused.

Kathie/Kate From what I have been reading is that the newer

antipsychotic/neuroleptic drugs do work for some LBD'ers. Seroquel is

an antipsychotic drug but is one of the newer ones, several people in

this site and the caringspouses site have LO's that are doing well on

it. The antipsychotic drug that put my husband in the hospital was

Risperdal, and there are several people on the two sites that are

doing okay with that. It is real hard to say how any one person is

going to react to a drug. Bill started on Aricept on 9/11 (won't

forget that date) it is not a antipsychotic but is used for

Alzheimers. The last two nights he has slept good and the

hallucinations are not as bad but we don't know if it is the drug

yet. Have thought of asking his doctor about Seroquel as several

people said their LO's started sleeping better after they started

it. From what I have heard some of these drugs can take a long time

to get full benfits from them.

So it just depends what you LO can tolerate, I do know that if they

put Bill back on a antipsychotic I will insist that he be in the

hospital so they can keep a close eye on him. How are you guys

doing? Barb

[Guest guest]

Barb, mom has been taking Trazadone for sleep and is now sleeping 6-7 hours

a night compared to 2-3 she was getting. Pluse tylonel and Risperdol plus a

patch for pain also.Shirley>

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[Guest guest]

Barb, mom has been taking Trazadone for sleep and is now sleeping 6-7 hours

a night compared to 2-3 she was getting. Pluse tylonel and Risperdol plus a

patch for pain also.Shirley>

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[Guest guest]

>Barb, mom has been taking Trazadone for sleep and is now sleeping 6-

>7 hours a night compared to 2-3 she was getting. Pluse tylonel and

>Risperdol plus a patch for pain also.

Thanks Shirley I have also been looking at antidepressants. Bill's

doctor appt is the 30th and I intend to discuss several of these

drugs with him, but I want him to check with Bill's neurologist

before we put him on anything else. If he keeps sleeping as well as

he has the last few nights we probably will not put him on anything

for now.

I would like to caution you about the pain patch in conjunction with

some of the other meds. The lady I take care of really had a bad

turn about 2 years ago. She was unresponsive most of the time and

abusive some of the time (she is not normally). Everytime she was

taken into the doctor with a new complaint, jittery, in pain,

depressed, sleeplessness etc...they would put her on a differant

drug. Her dementia was so bad that when several children and

grandchildren came home for Christmas she did not know them, she

asked her daughter what all of these people were doing in her house.

The doctor here was convinced that it was caused by the Parkingson's

but I thought it was happening too fast.

With her neurologist helping us long distance we started taking her

off of some of the drugs and replacing some of the others. It took

us 4 months. The pain patch was about the 3rd to go and was the

worst one to get her off of. It is a narcotic, she was in a lot of

pain after but when we got her off of it we noticed a decided

improvement. We left it up to her if she wanted to go back on it or

not, she said she could live with the pain but didn't want to lose

her mind again.

She still takes a lot of drugs but we have her pain under control now

with Tylenol arthritis formula and Vioxx. She no longer takes a pill

for anxity or a tranquilizer, her antidepressant is Paxil. The last 2

months the dementia has gotton worse again but not like before, she

is calmer with periods of restlessness. We will take a look at

medications again with her.

I got way to wordy again but just want to caution you on the pain

patch what you think are actions from the disease might be caused by

the drug.

[Guest guest]

>Pluse tylonel and Risperdol plus a patch for pain also.

Shirley sorry I met to start that whole thing off by asking if your

mom is on a prescription pain patch? There are some over the counter

ones that are not narcotic. Barb

[Guest guest]

Barb,

thanks for your concern. The pain patch is because of the Hip replacement. I

think it would just be while she is in the nursing home wouldn't it? I hope

so. What do you think? Shirley

PS be as wordy as you want, then I won't feel so bad when I get wordy.

>I got way to wordy again but just want to caution you on the pain

>patch what you think are actions from the disease might be caused by

>the drug.

>

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[Guest guest]

Sandie, Thanks for your kind words, but you're the one who deserves

them right now. You have my most heartfelt sympathy, caring and

understanding in the lost of your dad yesterday. I'm here on this

board because of the most recent diagnosis of LBD for my step-dad.

However, I lost my own dad just less than 6 months ago to lung

cancer at the age of 75. My heart and prayers go out to you and your

family.

(BTW we are almost 'neighbors' if you know of the QuadCity Area,

which includes Davenport, IA)

God Bless you and bring you comfort,

Peggy

[Guest guest]

> Hi everyone! I'm new here and am searching for any and all info I

> can find. My step-dad was just diagnosed a week ago as having

LBD.

Thanks to everyone who responded. I noticed, Barb, that you said

your husband was just recently diagnosed with LBD. What kind of

symptoms had he been having before this diagnosis? And for how

long? What makes a doctor suddenly or finally decide that he's

dealing with a patient with LBD? How do they come to determine

that? From everything I've researched, there is not tests to run.

So, is it all just a guessing game based on symptoms? Can trauma's,

such as surgery, intensify or speed up the symptoms and/or LBD? How

controllable is this disease?

We are all so confused since for a couple years now my step-dad was

being treated for Parkingsonism and early dementia, and now suddenly

because of the intense hallucinations, tremors, shaking and

confusion, he is diagnosed as having LBD. So, what exactly does

this mean? No one has been very informative in the medical fields

thus far. The best I got from the neurologist was him writing the

name down so I could do my own internet research. Anymore info ya

all want to share, I'm surely open to hear it.

God Bless

Peggy

[Guest guest]

Barb

Is your hubby still on Ativan? It sure is amazing how one med. can be

so beneficial for one person and not for another. Keeping you in my

prayers. Also, I haven't seen in here lately...I hope she is well

and that life is treating her good. :-))

Sandie

Des Moines, IA

[Guest guest]

Barb

Just wanted to share that I found out dad was wearing a pain patch -

Duragesic (sp). Had just heard about it Friday morning around 10:00.

I was told it was used more for end of life measures to keep the person

comfortable. Then every now and then he would let staff put on his

Nitrex patch (for his heart), otherwise he was on no other meds. and was

at such peace. Please let us know how the next dr. visit for Bill goes

and if there are any changes.

Sandie

Des Moines, IA

[Guest guest]

Peggy

Yes I am aware of the Quad Cities area. Also, another quinkidink...my

mom died of lung cancer only she was 47 and I was 19. I am now 39.

Strange the similarities found so often in this group that makes the

world seem smaller each day. As for now, cherish each and every moment

with your step-dad. Each day is a gift even in a healthy life. I look

forward to future posts from you. Thank you for your thoughtfullness

and care. Your prayers are also greatly appreciated. Sending hugs to

you!

Sandie

Des Moines, IA

P.S. Debbie, Leanne, and Lula...we have another Iowan and her name is

Peggy

[Guest guest]

Peggy

My dads diagnosis took almost a year. There were several tests done to

determine the diagnosis...mainly by process of elimination. Dad had

blood work for possible lead poisoning. Urine tests for infection

and/or heavy metals. CAT scans, office visits, and 2 trips to Iowa

City. The one and only test I decided not to do is spinal fluid. Could

determine possible deterioration of cells. So far all of those test

results could prove confusion, hallucinations and/or Lewy Body Dementia.

While in the dr. office, he would ask my dad memory questions, have him

identify objects in pictures (another symptom of LBD, is word

substitution as this is a thought process disease) and dad had to show

how he walked. Also the dr. (neurologist) had dad do several physical

tests with his hands...touch his finger to his nose, pat his leg first

palm down, then palm up, palm down and so on. Dad seem to fail most of

them immediately...little coordination. The story goes on but for now I

am tired. I hope some of this helps. I will answer more again soon.

You are in my prayers neighbor!!

Sandie

Des Moines, IA

[Guest guest]

>thanks for your concern. The pain patch is because of the Hip

>replacement. I think it would just be while she is in the nursing

>home wouldn't it? I hope so. What do you think?

Shirley I forgot about the hip replacement. My client has a cronic

bad back and she was on it for that, at first we thought it was

great. The pain would not let her get more then a few hours of sleep

at a time, she can't move herself when in bed. She started sleeping

good and then after about six weeks she started sleeping to good, 10-

12 hours at a time and when she was awake she was constantly

agitated. But if we had been smart and just used it for a few weeks

and then tried something else it would have probably been okay-they

really are great, and of course she was on all of the other mind-

altering drugs too. Check with your doctor and see if they need to

take her off of it gradually...if it is only for a few weeks they may

not have to. How is your mom doing now? Barb

[Guest guest]

>thanks for your concern. The pain patch is because of the Hip

>replacement. I think it would just be while she is in the nursing

>home wouldn't it? I hope so. What do you think?

Shirley I forgot about the hip replacement. My client has a cronic

bad back and she was on it for that, at first we thought it was

great. The pain would not let her get more then a few hours of sleep

at a time, she can't move herself when in bed. She started sleeping

good and then after about six weeks she started sleeping to good, 10-

12 hours at a time and when she was awake she was constantly

agitated. But if we had been smart and just used it for a few weeks

and then tried something else it would have probably been okay-they

really are great, and of course she was on all of the other mind-

altering drugs too. Check with your doctor and see if they need to

take her off of it gradually...if it is only for a few weeks they may

not have to. How is your mom doing now? Barb

[Guest guest]

>I noticed, Barb, that you said your husband was just recently

>diagnosed with LBD. What kind of symptoms had he been having

>before this diagnosis? And for how long? What makes a doctor

>suddenly or finally decide that he's dealing with a patient with

>LBD? How do they come to determine that?

Peggy my husband was diagnosed 2 years ago with Parkinson's also. He

was put on Sinemet at that time. This spring he started having

hallucinations, started small..worm holes in the rug I put it down to

bad eyesite and maybe a little dementia. When the hallucinations

started getting real bad, bugs and snakes and people in the house and

a call to 911 (as you read more of the stories this all gets to

sounding real familiar.)

We live on a small island in Alaska and the only doctors here are

GP's. His neurologist is in Washington and we only see him once a

year. We went to see his doctor here about the hallucinations and he

put him on Risperdal. I had ordered a new book on Parkinson's. I am

caregiver for a lady with PD and all of the books she had are

outdated. I read one paragraph in the new book about hallucinations

and LBD...it stated that if hallucinations and dementia started

within a few years of PD diagnosis that it might be LBD. That is all

it said. I told his doctor about that and he kind of shrugged it

off. I had not done any research on it at that time and didn't know

about the danger of the antipsychotics. Bill was given Risperdal on

Friday and by Monday he would just sit in the kitchen, he wouldn't

watch tv or play with the dog he just sat and cried because he didn't

know what was happening to him. I called the doctor and he said to

stop the Risperdal...I already had. He said that he didn't think it

was the med and the only way to find out was to take it away and then

give it back if he improved to see if he had the same reaction!

That was all done over the phone in the morning, by noon I was really

upset and called the clinic and said that Bill would see the doctor

even if I had to bring him into emergency. They worked us in and in

the meantime the doctor and a young visiting student had done some

research on LBD and Bill's doctor had contacted his neurologist who

said it was probably LBD. They put Bill in the hospital for

observation. To rule out the possibility of a brain tumour we flew to

Ketchikan a few days after that for a cat scan.

No they do not have a sure fire way to tell if it is LBD same as PD.

But on several of the sites with information it will give the

clinical symptoms that are used to determine if it is. Early onset

of hallucinations is one of them. If you have not already done so go

to your search engine and type in lewy body disease and you will find

a lot of informative sites. Also probably some of the other people

on here will steer you to some of the better ones. My memory is so

bad I can never remember what the addresses are.

So many of the medical field have not heard of this..nobody here has

so Bill is the first one in this town to be dx with it although I am

sure there have been others. Several people on this site have

mentioned problems starting after surgery or worsening after

surgery.

The good news is that for a time if you find the right " cocktail " for

your step father he could get a lot better for a while and that too

is a guessing game. It also can take as long as 3 months before you

see the full benefit of a drug. Is there a choice of neurologist in

the area where your mom and step dad are? If so maybe there is one

who is familiar with LBD. I was sory to hear about your dad that is

a tough one to go through. God Bless, Barb

[Guest guest]

>Is your hubby still on Ativan? It sure is amazing how one med. can

>be so beneficial for one person and not for another. Keeping you in

>my prayers. Also, I haven't seen in here lately...I hope she

>is well and that life is treating her good. :-))

Sandie Bill is still taking Ativan, he can have 2 a day but I only

give him one at night and the other one in the am if he had a bad

night. Tried giving him both at night but it didn't make any

differance. I wanted to ask you what your drug book says it is.

Bill's neurologist said that it is the same sedative that they give

to you before surgery (we always called it the " I don't give a damm

drug " ) only this is a much smaller dose. My drug book states that it

is a sedative not a antipsychotic. I did take note of what you said

though, and am hopeing that Bill will get on a cocktail that will

work for him and we can stop the Ativan, I don't think it is doing

that much for him anyway. The Aricept might be starting to kick in,

he has slept good for 2 nights in a row and it is after midnight and

he is still sleeping...usually he has been up 2 or 3 times by now.

I am sure will be back on one of these days, she has 4 kids and

although 2 are no longer home she is kept pretty busy. I haven't

heard from her this week so will give her a call tomorrow (I guess

that is later today) and let her know about your dad. My thoughts

and prayers are with you for the next couple of days. Hugs, Barb

[Guest guest]

In a message dated 09/21/02 11:36:11 PM Central Daylight Time,

Granmeme1@... writes:

> Can trauma's,

> such as surgery, intensify or speed up the symptoms and/or LBD? How

> controllable is this disease?

>

>

Barb,

Welcome. My Dad started out like your S. Dad. It became so much more

noticeable right after prostate surgery. He was ripping out tubes needles and

trying to get out of the hospital from fear of where he was. The dementia

became much more noticeable after that and the disease progressed much

quicker. His neurologist told us that it is very common for LBD patients to

show the dragon of the disease after a trauma.

Another Iowan,

Debbie C.

[Guest guest]

Peggy,

You might want to go to previous messages and do some reading in the

archives.

My 88 year old Mom was never dx'ed with anything but Alzheimers, but I

believe she is LBD. My reasons for that is she was different from her

AD friends. Mom didn't sleep every other night, she had hallucinations,

she was very sensitive to drugs, she was prone to falls, and push comes

to shove, she still knows, after 4 years of the real bad stuff, what is

happening and can voice that. I describe AD patients as going slowly

down a real big hill. Mom's decline has been a series of steps and the

steps aren't all the same size. There are narrow ones and wide ones

depending on what is happening.

And what the fact of the matter is nothing is known without an autopsy.

And that is obviously done later if it is important to know. There have

been others here who thought the dx was LBD and found out at autopsy

their LO had AD.

At the bottom of this message is the LBD website to click on and learn

more.

Donna

To learn more about LBD Disease, please visit the Lewy Body Disease

Association site at:

http://www.lewybodydisease.org

[Guest guest]

Peggy,

You might want to go to previous messages and do some reading in the

archives.

My 88 year old Mom was never dx'ed with anything but Alzheimers, but I

believe she is LBD. My reasons for that is she was different from her

AD friends. Mom didn't sleep every other night, she had hallucinations,

she was very sensitive to drugs, she was prone to falls, and push comes

to shove, she still knows, after 4 years of the real bad stuff, what is

happening and can voice that. I describe AD patients as going slowly

down a real big hill. Mom's decline has been a series of steps and the

steps aren't all the same size. There are narrow ones and wide ones

depending on what is happening.

And what the fact of the matter is nothing is known without an autopsy.

And that is obviously done later if it is important to know. There have

been others here who thought the dx was LBD and found out at autopsy

their LO had AD.

At the bottom of this message is the LBD website to click on and learn

more.

Donna

To learn more about LBD Disease, please visit the Lewy Body Disease

Association site at:

http://www.lewybodydisease.org