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

[Guest guest]

PS Peggy,

Welcome.

Donna

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

Association site at:

http://www.lewybodydisease.org

[Guest guest]

PS Peggy,

Welcome.

Donna

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

Association site at:

http://www.lewybodydisease.org

[Guest guest]

>Barb, Welcome. My Dad started out like your S. Dad.

Debbie, it is Peggy who was asking about the surgery I am sure that

she will read this and it will help to answer her question. How is

you dad doing now. Barb

[Guest guest]

Hello Peggy, and welcome to the group. I am sorry to hear about your step

father. My MIL has LBD and from reading everything I can and being a part

of this group, I have found comfort and information. You will too. Your

step dad seems to portray some of the classic LBD indicators. I have heard

from many that soon after any type of surgery, the LBD kicks into high gear.

Not sure why this is, but it seems pretty common.

As far as the best meds, that can be a very difficult challenge. What works

for some, doesn't work for others, but I can tell you for my MIL (she is 60)

the " cocktail " that works best is: Aricept 10mg, Risperidal .5mg, Paxil

30mg, Seroquel 200mg, and vitamin E 2000IU. We just recently were going

through some very hard times, horrible sleep patterns, and tons of

agitation. Then my MIL's doctor added that Seroquel and I have to say it

has been a remarkable change. Almost instantly too! We have tried many

things, but this is the only thing that has proven to work well.

This disease changes our LO's so much. Personality, characteristics, and

much more. You asked if they can bet " better " . If it is true LBD, then the

answer is sadly no. All you can do is " manage " the disease. This takes

meds and lots of support. Your Mom may have to get outside help. The

social worker at the hospital can help arrange this. Your Mom also may want

to consider an anti-depressant. This disease is horrible, and not only will

it effect your step dad, but your entire family. Watching this disease take

its hold will test your strength. Be strong, as a lot of questions from

your medical providers, and read everything you can get your hands on,

including past posts from this site. You will find so much information and

a lot of answers to questions you will have in the future. You ask what are

the stages. For us, it came on slow, with just some forgetfulness and

constant repeating of herself. Then it progressed to not remembering dates,

birthday's and having to write all that kind of stuff down. Getting lost in

her own neighborhood. Then came her personal appearance. She started

letting herself " go " which is very unusual for my otherwise, " fashionable "

MIL. She looked like she was coming apart. I can't really explain that

well! Then it just got worse, to where she started seeing people in her

home and she was calling 911 to report 2 ladies in her home trying to steal

her socks.

That was what I call stage 2. She has stayed in this stage for a long time

as I think most do stay put in this stage for a long time. Where meds

control things and you deal with the occasional " bad days " . We have been in

this stage for about 7 months and holding.

I wish you luck, strength, and courage. Please keep up posted and know you

are in my thoughts and prayers.

Good luck,

Hi! I'm new here ...

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

[Guest guest]

Hello Peggy, and welcome to the group. I am sorry to hear about your step

father. My MIL has LBD and from reading everything I can and being a part

of this group, I have found comfort and information. You will too. Your

step dad seems to portray some of the classic LBD indicators. I have heard

from many that soon after any type of surgery, the LBD kicks into high gear.

Not sure why this is, but it seems pretty common.

As far as the best meds, that can be a very difficult challenge. What works

for some, doesn't work for others, but I can tell you for my MIL (she is 60)

the " cocktail " that works best is: Aricept 10mg, Risperidal .5mg, Paxil

30mg, Seroquel 200mg, and vitamin E 2000IU. We just recently were going

through some very hard times, horrible sleep patterns, and tons of

agitation. Then my MIL's doctor added that Seroquel and I have to say it

has been a remarkable change. Almost instantly too! We have tried many

things, but this is the only thing that has proven to work well.

This disease changes our LO's so much. Personality, characteristics, and

much more. You asked if they can bet " better " . If it is true LBD, then the

answer is sadly no. All you can do is " manage " the disease. This takes

meds and lots of support. Your Mom may have to get outside help. The

social worker at the hospital can help arrange this. Your Mom also may want

to consider an anti-depressant. This disease is horrible, and not only will

it effect your step dad, but your entire family. Watching this disease take

its hold will test your strength. Be strong, as a lot of questions from

your medical providers, and read everything you can get your hands on,

including past posts from this site. You will find so much information and

a lot of answers to questions you will have in the future. You ask what are

the stages. For us, it came on slow, with just some forgetfulness and

constant repeating of herself. Then it progressed to not remembering dates,

birthday's and having to write all that kind of stuff down. Getting lost in

her own neighborhood. Then came her personal appearance. She started

letting herself " go " which is very unusual for my otherwise, " fashionable "

MIL. She looked like she was coming apart. I can't really explain that

well! Then it just got worse, to where she started seeing people in her

home and she was calling 911 to report 2 ladies in her home trying to steal

her socks.

That was what I call stage 2. She has stayed in this stage for a long time

as I think most do stay put in this stage for a long time. Where meds

control things and you deal with the occasional " bad days " . We have been in

this stage for about 7 months and holding.

I wish you luck, strength, and courage. Please keep up posted and know you

are in my thoughts and prayers.

Good luck,

Hi! I'm new here ...

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

[Guest guest]

Hello, Peggy, and welcome.

I won't go into answering your questions at this point, as I am so far behind

on posts and expect that others have offered their input. My husband's case

progresses slowly and at this point I am more concerned about the

Parkinsonism than about the cognitive aspects, as he continues to maintain as

he was nearly 4 yrs ago. I credit Aricept and his own innate efforts for

this. He takes several Sinemets, which keep him from shuffling and helped

his overall posture. He also goes to massage therapy twice weekly and

special needs exercise 2-3x/wk.

Welcome aboard - you will/have already had a lot of support. :-)

Cheryl

[Guest guest]

In a message dated 9/22/02 2:15:46 AM Central Daylight Time, bhardy@...

writes:

> 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.

Barb, your basis is different from mine, but I can attest that the more Bob

slept the worse day he had. Since hospitalization and arising earlier (and

since being on Remeron which helps him sleep better!!) we have few " fuzzy "

days anymore. But I do recall that those long, long sleeps equated to worse

performance when awake. Getting him up before he was ready only made things

worse.

Cheryl

[Guest guest]

>we have few " fuzzy " days anymore. But I do recall that those long,

>long sleeps equated to worse performance when awake.

Cheryl it is almost like they are drugged when they sleep like that,

of course she was at that time. Now my client is starting to do the

the same thing again, only this time she is not being overdrugged. We

have to wake her up to take her to the bathroom several times, and

she goes right back to sleep..it makes the night shift real easy but

don't know if it is a good thing or not. Just so hard to see her

going down hill as she has put up such a brave fight for so many

years. Barb