hello

[Guest guest]

HI Margaret,

This disease is so very awful - for the person dx'd with it and the

family members who must watch their Loved One (LO) decline more and more

each day. My mom, too, had terrible anxiety and nothing we tried seemed

to help. Eventually we tried Seroquel but at a very low dose as she

turned into a zombie at a regular dose.

So much of what you described will ring true to everyone here. I have

made a point of keeping my mom away from medications like Haldol,

Ativan, etc. as these meds can make this condition worse. I was

constantly tweaking with her meds and now that my mom is in the later

stages of the disease I have had her taken off all meds except for

Aricept. BTW, what meds is your father taking? There is a list of meds

on the website that many here have shared that resulted in negative

effects in their LO that you might want to look at.

I am sending you and yours strength for the road ahead. Make the most

of his good days/moments as they will sustain you.

Courage

[Guest guest]

hello margaret,

welcome to our family, although it saddens me that yhou had to look us up.

feel free to vent scream cry, laugh, tell stories, whatever you need to us,

for we understand what you are going thru and will not judge you instead we

will listen and cry with you.

my name is sharon, my husband donnie and i took care of my dad from jan 2003

until his death 9/25/05/.

my dad also went very very quickly.

he s tarted in 93 with hallucinations, like your dad, of people being out to

kill him, my dad did have top security clearance as a navy helicopter pilot

butwas never privy to anything that the cia or kgb would be inteeresteed in

him. he was convinced that all the neighbors 'were in on it' and after him,

ready to kill him if they could get a clear shot of him, or would kidnap me

and torture me just to get to him. in 2000 dad started te unexplained falls

he would be hanging his laundry out and the next thing he knew he would be

on the ground with no clue how he got there. he would frequently drop

things as well, even breaking some of his prized collection pieces. so on

thanksgiving 2002 dad asked us to move down with him and we did jan 19 2003,

donnie left his large family and a job of 12 years to come to florida to

help me with dad, we werent married at the time.

for the first year we were here, dad was pretty much bedriiden by choice.

he could get up to go to the restroom but we needed to be nearby incase he

fell. he was no longer able to cook for himslef, but could feed himslef,

the only change we had to make was to cut his food into bite size pieces for

him becuase he forgot how to cut foods and would put huge hunks of meat into

his mouth and choike on it. as the second year we were here came, dad had

developed severe parkinsonism shakes but they were usually one hand only,

but he woke up and his whole body was in shaking spasms and he couldnt stop

so i called the ambulane and took him to the hosp . well he was in for 3

weeks including 2 in ICU when a weekend fill in edoctor mentioned that he

though t dad had lbd i looked it up and it described daddy to a T . dad

was then brought to a neurologist who started him on exelon which was our

miracle drug, dads speech was much better, and his attitude increased as

well, he didnt seem to fall as much either. that lasted about 1 year and

duriing the time he topped out on exelon and namenda was added, he wasnt on

namenda for 3 weeks when his blood pressue tookk a sharp drop, he would

bottom out, (orthostatic bp, the drop of bp from sitting to standing,

standing to walking, etc) so we had to stop all dementia meds. july 2005,

dad fell and fractured his hip and had to have hip surgery, after that he

was never able to walk again, they replaced the ball in his hip, but dad was

unable to wear teh brace he needed to and the hip jiont kept coming out of

socket. the surgeon, and myslef with dads consent was not ot operate

anymore as it took too much functioning away from dad. he had aspiraiton

pneumonia and a pulmonary embolyis (lung blood clot) the end of july spent 3

week in icu with a ventilator and declined even more. by now he was only

eating purreed foods, and thickened liquids. back to a new nh (nursing

home) where he did fairly well, this is where he popped the hip jiont again,

butuntil then he had physical therapy everyday trying to get him to walk

again, but when the hip joint kept coming out, we all knew his walking days

were over. very very sad. dad had a second bout of aspiratoin pneumonia and

this made him so weak. we hadmade arrangement for him to come home oct 5

but dad died sept 25. it is an awful disease, dad had dr jekyll mr hyde

dauys, where he treated me like a whore would be treated by jher pimp.

upset me quite alot, this group saved my sanityh for sure.

i am a memeber of the help line where you can call ir you need to vent to

something. myy cell phone number with free incoming calls is ,

please feel free to call if you want. hugs sharon m

-- hello

Hello. I am new to this group, but am glad to have found you. I

have read all the recent posts and many archived ones with great interest,

hoping to find someone with an experience like ours. Our dad (74) was just

diagnosed with this horrible illness by a gerontologist who says she is

fairly confident in the diagnosis. What I've read seems consistent with

what we've experienced. We have a lot to learn and I would value any

thoughts about our experience.

My dad has suffered for decades from sleep apnea, so often napped during

the day, and even as a young man did not have a great memory for names etc,

so we may well have missed many early signs. The earliest thing I can point

to is June 2004 when he was upset and started an argument over a political

matter -- not at all his style and just totally out of keeping with his kind

" walk lightly on the earth " personality. We also noticed he was forgetting

how to do certain things. By Dec 2004, he was having trouble playing chess

-- remembering the moves the pieces make -- which was disturbing as he is a

master-level player. In June 2005 we all noticed that he was hunching over

quite a bit and his walk had a shuffle to it, though he could still get

around and we didn't see any shaking or other parkinson-like symptoms. Then

at the end of the month he fell while walking down a marble staircase and

injured his shoulder, which required months of physical therapy, but which

he handled well

and seemed to have recovered from. One marked change in his personality,

though, is that he was beset by anxiety -- worried about money, worried

about safety etc. This was really out of keeping with the person he's been

all his life.

Then in early October, my mother and dad were on a trip in Canada, and my

father awoke in an absolute panic, insisting the building was on fire and

trying to wake other guests. There was no calming him down or convincing

him they were safe. He wanted to use the bathroom but when he opened the

door and saw his reflection in the mirror, he was convinced someone else was

in there and was even more intent on leaving the hotel. They came home from

the trip the next morning, and were plunged into a living hell --

hallucinations (seeing people, animals, babies in the house); persecutory

delusions (certain there were assasins out to get him, people taping his

life etc.); and very little sleep most nights. He would fall asleep but

then wake to go to the bathroom (which he needed to do with great frequency)

and be completely agitated and upset -- either we were on a boat that was

sinking, or someone was breaking in or trying to kill him etc. These

episodes were punctuated by periods of

near normalcy -- he knew everyone, was rational etc. Most of the scary

stuff was at night.

We had several appointments with a neurologist and began a dizzying array

of medications: risperdol (no help with delusions, caused serious physical

side effects); haldol (same); atavan; seroquel; trazodone; arricept. I'm

sure I am leaving some out. Still had the night episodes and daytime

hallucinations and still not sleeping more than 2-3 hours/night. When he

was awake at night, he walked all over the house and often seemed to be in a

trance of sorts -- not really aware of whoever was up with him. He would

move things around, try to turn furniture over, and otherwise be in constant

motion. He often would unlock doors and try go outside.

Things reached a head early this month when he thought my mother was an

intruder and he got aggressive, though did not hurt her. She was scared for

her safety and wanted help trying to find the right meds, so the next day

she took him to the hospital. He showered and dressed himself, went there

willingly, but became upset when they talked about admitting him, at which

point they pinned him down, injected 4 mg Haldol and put him in restraints.

After that, we had a family member there every minute next to him. He was

really out of it from the haldol: could barely walk, only speak a few words

in a whisper, not eating or drinking, incontinent at times. They put him on

Abilify but there wasn't much else happening therapeutically, so we took him

home after 3 days. He was in bad shape at first, but slowly got better,

though he started doing things like taking off his outer clothing (says it

bothered him), " freezing " like a statue, and crawling on the floor, and

sleeping at night

remained a big problem, though there were no more signs of aggression. As

before, these periods were offset by times when he was so lucid and clear we

felt like he was miraculously " back " to himself -- generally following those

few precious nights when he would be able to sleep. Whether lucid or

confused, he is anxious most of the time.

He's now in an assisted living, with 24 hour a day help. We know this may

not last as a solution, but it is helpful now, especially because he can

walk up and down the hall at night which he has such great need to do. He

seems ok there, though most everyone else has Alzheimers, which is very

different. When he is lucid, it is lonely. We'd all rather have him with

us -- but the being up all night every night just wore everyone out, along

with the days that we couldn't reach him. We are trying to see the way

ahead and wonder what is next. The gerontologist says our course has been

very fast, even for a fast moving disease like LBD. We have a new

prescription for remerol, which we will try for the insomnia. Other than

that, we are praying amidst the tears -- so sad for all he has lost, for the

person he was and will no longer be, though we are still blessed by glimmers

of it from time to time. He has mentioned several times that he thinks his

time left is short, though he

does not wish to die. We want to try to make whatever time he has left as

pleasant as it can be. Today he won a trivia contest at the assisted living

place, and then asked an aide if she could help him because, he told her, he

knows he is losing his mind.

I'd love to hear any reactions to this, though I know if you are on this

list you have your own hands full trying to deal with this illness. Thanks

for any thoughts you care to send.

---------------------------------

Yahoo! Shopping

Find Great Deals on Holiday Gifts at Yahoo! Shopping

[Guest guest]

Welcome Margaret,

This is a a closed group and if you have changed your name, I don't think you

will have a big issue. We have a lot of people who post with their full name.

Glad you found us and hope you can get good direction and help when you need it.

My Mom died in '02 and I had her at home with me for 3 years and the 4th year in

a nh nearby.

I think someone already posted the worse part is the meds. I could use very few

on Mom and it was later that I did that. I cut " normal " pills as she reacted to

badly to them. Less is more with this disease. Check out the " links " at the

LBD page:

http://www.lewybodydementia.org

You should be able to click on that and find the last three or four newsletters

and other good info on the links.

Come back often and let us know how your Dad is doing and especially how you are

doing.

Donna R

hello

Hello. I am new to this group, but am glad to have found you. I have

read all the recent posts and many archived ones with great interest, hoping to

find someone with an experience like ours. Our dad (74) was just diagnosed with

this horrible illness by a gerontologist who says she is fairly confident in the

diagnosis. What I've read seems consistent with what we've experienced. We

have a lot to learn and I would value any thoughts about our experience.

My dad has suffered for decades from sleep apnea, so often napped during the

day, and even as a young man did not have a great memory for names etc, so we

may well have missed many early signs. The earliest thing I can point to is

June 2004 when he was upset and started an argument over a political matter --

not at all his style and just totally out of keeping with his kind, " walk

lightly on the earth " personality. We also noticed he was forgetting how to do

certain things. By Dec 2004, he was having trouble playing chess -- remembering

the moves the pieces make -- which was disturbing as he is a master-level

player. In June 2005 we all noticed that he was hunching over quite a bit and

his walk had a shuffle to it, though he could still get around and we didn't see

any shaking or other parkinson-like symptoms. Then at the end of the month he

fell while walking down a marble staircase and injured his shoulder, which

required months of physical therapy, but which he hand

led well

and seemed to have recovered from. One marked change in his personality,

though, is that he was beset by anxiety -- worried about money, worried about

safety etc. This was really out of keeping with the person he's been all his

life.

Then in early October, my mother and dad were on a trip in Canada, and my

father awoke in an absolute panic, insisting the building was on fire and trying

to wake other guests. There was no calming him down or convincing him they were

safe. He wanted to use the bathroom but when he opened the door and saw his

reflection in the mirror, he was convinced someone else was in there and was

even more intent on leaving the hotel. They came home from the trip the next

morning, and were plunged into a living hell -- hallucinations (seeing people,

animals, babies in the house); persecutory delusions (certain there were

assasins out to get him, people taping his life etc.); and very little sleep

most nights. He would fall asleep but then wake to go to the bathroom (which he

needed to do with great frequency) and be completely agitated and upset --

either we were on a boat that was sinking, or someone was breaking in or trying

to kill him etc. These episodes were punctuated by per

iods of

near normalcy -- he knew everyone, was rational etc. Most of the scary stuff

was at night.

We had several appointments with a neurologist and began a dizzying array of

medications: risperdol (no help with delusions, caused serious physical side

effects); haldol (same); atavan; seroquel; trazodone; arricept. I'm sure I am

leaving some out. Still had the night episodes and daytime hallucinations and

still not sleeping more than 2-3 hours/night. When he was awake at night, he

walked all over the house and often seemed to be in a trance of sorts -- not

really aware of whoever was up with him. He would move things around, try to

turn furniture over, and otherwise be in constant motion. He often would unlock

doors and try go outside.

Things reached a head early this month when he thought my mother was an

intruder and he got aggressive, though did not hurt her. She was scared for her

safety and wanted help trying to find the right meds, so the next day she took

him to the hospital. He showered and dressed himself, went there willingly, but

became upset when they talked about admitting him, at which point they pinned

him down, injected 4 mg Haldol and put him in restraints. After that, we had a

family member there every minute next to him. He was really out of it from the

haldol: could barely walk, only speak a few words in a whisper, not eating or

drinking, incontinent at times. They put him on Abilify but there wasn't much

else happening therapeutically, so we took him home after 3 days. He was in bad

shape at first, but slowly got better, though he started doing things like

taking off his outer clothing (says it bothered him), " freezing " like a statue,

and crawling on the floor, and sleeping at n

ight

remained a big problem, though there were no more signs of aggression. As

before, these periods were offset by times when he was so lucid and clear we

felt like he was miraculously " back " to himself -- generally following those few

precious nights when he would be able to sleep. Whether lucid or confused, he is

anxious most of the time.

He's now in an assisted living, with 24 hour a day help. We know this may not

last as a solution, but it is helpful now, especially because he can walk up and

down the hall at night which he has such great need to do. He seems ok there,

though most everyone else has Alzheimers, which is very different. When he is

lucid, it is lonely. We'd all rather have him with us -- but the being up all

night every night just wore everyone out, along with the days that we couldn't

reach him. We are trying to see the way ahead and wonder what is next. The

gerontologist says our course has been very fast, even for a fast moving disease

like LBD. We have a new prescription for remerol, which we will try for the

insomnia. Other than that, we are praying amidst the tears -- so sad for all he

has lost, for the person he was and will no longer be, though we are still

blessed by glimmers of it from time to time. He has mentioned several times

that he thinks his time left is short, thoug

h he

does not wish to die. We want to try to make whatever time he has left as

pleasant as it can be. Today he won a trivia contest at the assisted living

place, and then asked an aide if she could help him because, he told her, he

knows he is losing his mind.

I'd love to hear any reactions to this, though I know if you are on this list

you have your own hands full trying to deal with this illness. Thanks for any

thoughts you care to send.

---------------------------------

Yahoo! Shopping

Find Great Deals on Holiday Gifts at Yahoo! Shopping

[Guest guest]

,

Welcome! Sorry you have to be here. And we are a most supportive group who

will understand.

If you click on the .org under my name on this message, it will also take you to

the LBDA and their web page. If you click on the link, you will find lots of

good info.

Some of it you may want to copy so your Mom can do her own reading. You have

some pretty important people in the UK who also know what you are going through.

Sally and can be found on the UK link that is on the .org page I was

talking about. One of the foremost people who is on our Scientific Advisory

Board is from there with you. He has just participated in writing a book.

" Dementia with Lewy Bodies "

O'Brien, Ames, Mc (Authors)

& Francis (I believe Publishers)

I think there are lots of other MDs who contributed to the writing. It is most

expensive (Over $100. ) But the latest info. Probably can be found in Med

library near you or maybe even the area library. It is fairly new Book

And meantime there is lots of info on the website. Keep in contact. Lots of

good people here will tell you their experience. One of the most unfortunate

things, is that while there are similarities, each person has lots of different

reactions to the disease and to the drugs.

Donna R

Do you want to read more about Lewy Body? You can also read the Thistle, the

LBD Newsletter. Just click on:

http://www.lewybodydementia.org

Hello

Hi everyone,

My name is and it looks like my father has LBD. He has all the

symptoms and is getting worse.

I live in the UK (London) I am looking for any information that I can

offer to my mother who is looking after Dad as she does not have

internet access.

Any advice gratefully received,

Welcome to LBDcaregivers.

[Guest guest]

You mentioned that your husband sleeps but wets during the night. We use a

catheter, a condom-like thing which then drains into a bag. It is wonderful

for those who are dealing with someone who sleeps through the night and isn't

struggling to get the thing off. It literally changed my life not having to

get up several times a night and THEN not be able to fall back asleep. It

made me a zombie. Arlene

[Guest guest]

Arlene...read your response..Where did you get the catherter..meg

Zweibeers@... wrote:

You mentioned that your husband sleeps but wets during the night. We use a

catheter, a condom-like thing which then drains into a bag. It is wonderful

for those who are dealing with someone who sleeps through the night and isn't

struggling to get the thing off. It literally changed my life not having to

get up several times a night and THEN not be able to fall back asleep. It

made me a zombie. Arlene

[Guest guest]

Sorry to hear that. I totally understand. My RSD started in my neck and

left arm and not too long after that I started getting the same pain in my

right arm...now it is full body!!! It is really awful to feel all that pain

in every fiber of my body and the swelling gets really bad! Good luck. I

hope it isn't spreading!

Gentle hugs, Debi

-- Hello

hello all, yeah its another letter of me complaning,, I feel my RSD is

moving to my right foot now.. identical pain on the oppoiste foot and

area, *sigh*

To read these messages on the Hugs web site go to:

http://groups.yahoo.com/group/Hugs-N-Pain

you can contact me privately at starlyin@...

Rose

Owner/ Moderator Hugs N Pain

God Bless our Troops

Please Pray for them

[Guest guest]

Oh Lordy...I'm so sorry the pain is moving. It's done that to me, and it

hurts like heqq...you not only have pain on one side, you have it on both

sides..or all over your body....

<sigh>

You know, it was funny when sent that article about the woman who

said that her 'change of attitude' had a lot to do with her pain level...I

had to laugh, when I read further, and saw that her attitude wasn't so good,

when her batteries failed on her morphine pump...LOLOLOLOL...I shouldn't

laugh because I know she was in pain...but I just have to grin at these

people who say it's all 'attitude' and that your pain won't be so bad if you

change your attitude...

Just remember to change the batteries on your pain management pump, too,

huh? <snort>

Yeah, I'll change my attitude and move around more, when the pain is at a

level where I CAN...when I wake up in the morning, and all the muscles in my

body are screaming..it's a little hard to think about smiling, you know?

Guess I need to change the batteries on my attitude. <shriek>

gustate et videte quam bonus sit Dominus....

le

Sr. St. of the Cross, OCDS

" I always feel I have to take a stand, and there's always someone on hand to

hate me for standing there. I always feel I have to open my mouth, and every

time I do I offend someone somewhere. "

--Ani diFranco, " What If No One's Watching "

Wife to Salvador, Mom to (7), our child of the heart in Ecuador, Manda,

our child of the heart in Idaho, and 6 wee babes in God's tender arms.

[Guest guest]

In a message dated 2/22/2006 9:23:11 P.M. US Eastern Standard Time,

kaffyt_bear@... writes:

Yeah Michigan does not

have a good RSD doc. do they exist ????

anywherenear the indiana line?

[Guest guest]

Well Im early for todays post, whishing no pain and and sleep would

come. seems Like what I do and say isnt the right thing , I cant

spread myself in 25 places at once and must pick whats important to me

and thats my family, Ive had a hard time getting on to chat , to which

again I feel some are in dis belief and felt that I let them down in

time of need, Im human and I have feelings,Im in pain to, I have a

family to, somedays I feel like crying what ABOUT ME ? but I put on

my smile and forget about me and try to find the right things to say

and do to comfort others, They say stress makes RSD flare up and yet

its those people that adds the stress, DO they NOT care ? does anyone

care ? Im hurting Im in pain, I dont not feel like laughing for I

feel like curling up and shut out the world, I want to find comfort,

Im tired of settling for ok , again I repete does anyone care ? Kathi

[Guest guest]

A BIG welcome to all the newbies!.....havent posted in a while-had surgery

on my left wrist. doc said things went better than expected, but doubts that

i will ever be able to return to nursing. (work in the ob/gyne

dept)....still have post-op pain...will begin therapy at the end of the

month. filed for disabilityon 2/14, as i have 4 major joints

affected....never thought at 38 yrs old, (39 in april), i would possibly be

on disability.......sux!!!!! sherri

Stay strong and healthy

>From: ScarletCatnRuby2@...

>Reply-To: Hugs-N-Pain

>To: Hugs-N-Pain

>Subject: Re: Hello I'm new/

>Date: Thu, 9 Mar 2006 13:48:42 EST

>

>

>In a message dated 3/9/2006 1:46:28 P.M. Eastern Standard Time,

>mustangsally351@... writes:

>

>Thanks for the welcome to the group. You know what is funny with my son

>is

>the moans and groans when he picks something up or gets up out of his

>highchair, because he hears me when I do stuff groaning and moaning. LOL

>It is so cute to here a two year old groun when he gets up. Poor little

>guy.

>

>

>

>HA Sonya... they are funny what they pick up. My daughter is 3 and she

>now

>has sympathy pain for me. When I go to eat, she will watch me and I see

>her

>clutch her cheek, and make faces like I do. PO KID!!!!

>

>LOL Sonya I give ya credit for doing your hair everyday... hahahah not me

>man. UP IN A CLIP!

>

>

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