Re: Re: 3 main LBD symptoms/Robin

[Guest guest]

I second that!  Thank you for everything, Robin!

Helene

 

________________________________

To: LBDcaregivers

Sent: Wednesday, September 7, 2011 2:39 PM

Subject: Re: 3 main LBD symptoms/Robin

 

Robin, you are always so informative when you jump in here. I can't imagine the

numbers of caregivers you have helped in understanding and dealing with LBD. I

just wanted to let you know once again how much you are appreciated and what an

asset you are to this group.

> >

> > I have read that these 3 symptoms are what separate LBD from PD and

Alzheimer's: 1. patients have detailed and vivid Hallucinations early in the

disease. 2. people with LBD show marked fluctuations in their cognitive

functioning- sometimes referred to as 'good days' 'bad days'. 3. Lbd has

EDS(excessive daytime sleeping) and have restless, disturbed sleep w/

behavioral acting out, at night. How important is it to have these symptoms to

have LBD? Can you caregivers out there tell me if that is what you experience

with your LO ? Is my wife's doctor missing something ? She hasn't had

hallucinations, doesn't have good days and then bad days, and she sleeps like

a log at night. She has cognitive problems, walking problems, and had delusions

with paranoia. She has never had those 3 main symptoms. She is on various meds

and they gave her ECT in the hospital for psychotic depression before he came up

with possible LBD?? Anyone know if ECT can

damage your brain? The video they will show you makes it sound harmless and a

slam dunk cure for serious depression. Any thoughts would be helpful.

..........gary (wife Kay-age 59- going on 2 years with something terrible)

> >

>

[Guest guest]

Hello all, We have been told about LBD, and are relaizing that yes,this is what

is going on with my husband.  The Dr. have talked to us but, my husband really

thinks that all of the symptions are from taking " seroquel " " . " Arcept " amd

Namenda " He wants to cut them all  half in fact he has cut his seroquel down

already.Are we going to be in trouble??

Subject: Re: Re: 3 main LBD symptoms/Robin

To: " LBDcaregivers " <LBDcaregivers >

Date: Wednesday, September 7, 2011, 12:45 PM

 

I second that!  Thank you for everything, Robin!

Helene

 

________________________________

To: LBDcaregivers

Sent: Wednesday, September 7, 2011 2:39 PM

Subject: Re: 3 main LBD symptoms/Robin

 

Robin, you are always so informative when you jump in here. I can't imagine the

numbers of caregivers you have helped in understanding and dealing with LBD. I

just wanted to let you know once again how much you are appreciated and what an

asset you are to this group.

> >

> > I have read that these 3 symptoms are what separate LBD from PD and

Alzheimer's: 1. patients have detailed and vivid Hallucinations early in the

disease. 2. people with LBD show marked fluctuations in their cognitive

functioning- sometimes referred to as 'good days' 'bad days'. 3. Lbd has

EDS(excessive daytime sleeping) and have restless, disturbed sleep w/ behavioral

acting out, at night. How important is it to have these symptoms to have LBD?

Can you caregivers out there tell me if that is what you experience with your LO

? Is my wife's doctor missing something ? She hasn't had hallucinations, doesn't

have good days and then bad days, and she sleeps like a log at night. She has

cognitive problems, walking problems, and had delusions with paranoia. She has

never had those 3 main symptoms. She is on various meds and they gave her ECT in

the hospital for psychotic depression before he came up with possible LBD??

Anyone know if ECT can

damage your brain? The video they will show you makes it sound harmless and a

slam dunk cure for serious depression. Any thoughts would be helpful.

..........gary (wife Kay-age 59- going on 2 years with something terrible)

> >

>

[Guest guest]

Thanks for the information and much need input. We have a Dr. app. nest week and

am going to ask more about these 3 med.  The side affects are what we are

really going thru I have in the back of my mind, that maybe the problem is just

the med.  Our family think different  Guess well see.  Thanks again.

Subject: Re: 3 main LBD symptoms/Robin

To: LBDcaregivers

Date: Friday, September 9, 2011, 10:54 AM

 

Carole, my gut tells me that if your husband is high functioning enough to

determine that he wants to cut back the Seroquel a bit, that I would go for it.

Between his feelings of how he reacts to the meds and your observations, you

could come to the best possible cocktail for him. How most of us would

appreciate that kind of feedback! Just remind him that he needs to cut back a

little at a time, one med at a time so he can best determine what is doing what

to him, and make sure you are overseeing. Many of our los need med adjustment

after starting but certainly aren't in a position to determine how to do the

tweaking.

We have recently started my mil on Aricept. The downhill slide since then tells

me she could be reacting poorly to it, she thinks it is the med. I am listening

to her input and while we persist to give it time to turn around and become more

positive for her we are checking into blood work and testing for her other

varying physical problems. Another test today and then back to the doctor for

all results, a full accounting to him of what she is going through and the best

determination we can make of where to go next with her and meds. She is still

high functioning enough to give us good feedback and we can see her decline

since starting the Aricept as well. I'm suspicious there might be LBD with her

but so far she has just been diagnosed with mild dementia so I haven't jumped in

on this site as a renewed caregiver. I just appreciate the response she can give

us as to how she has declined and know she needs guidance as to how to deal with

it. If it were up

to her she would just stop the Aricept and be done with trying to improve the

obvious signs of dementia she exhibits. I appreciate that the Aricept might not

be the drug of choice for her but that there must be something she will rally a

bit on. So far her input is part of the key. I wish I had the knowledge I have

now when my mother with PDD/LBD was reacting poorly to her meds and am taking

that knowledge forward with me for MIL.

All the best to you and your dh as you sort through this time.

[Guest guest]

We have had our Dr. app. and both of them say, leave the med as they are. My

husband said ok. They all said that he needs to make himself stay awake and to

do some walking.  He still can make that choice, so we are going for it

Subject: Re: 3 main LBD symptoms/Robin

To: LBDcaregivers

Date: Friday, September 9, 2011, 10:54 AM

 

Carole, my gut tells me that if your husband is high functioning enough to

determine that he wants to cut back the Seroquel a bit, that I would go for it.

Between his feelings of how he reacts to the meds and your observations, you

could come to the best possible cocktail for him. How most of us would

appreciate that kind of feedback! Just remind him that he needs to cut back a

little at a time, one med at a time so he can best determine what is doing what

to him, and make sure you are overseeing. Many of our los need med adjustment

after starting but certainly aren't in a position to determine how to do the

tweaking.

We have recently started my mil on Aricept. The downhill slide since then tells

me she could be reacting poorly to it, she thinks it is the med. I am listening

to her input and while we persist to give it time to turn around and become more

positive for her we are checking into blood work and testing for her other

varying physical problems. Another test today and then back to the doctor for

all results, a full accounting to him of what she is going through and the best

determination we can make of where to go next with her and meds. She is still

high functioning enough to give us good feedback and we can see her decline

since starting the Aricept as well. I'm suspicious there might be LBD with her

but so far she has just been diagnosed with mild dementia so I haven't jumped in

on this site as a renewed caregiver. I just appreciate the response she can give

us as to how she has declined and know she needs guidance as to how to deal with

it. If it were up

to her she would just stop the Aricept and be done with trying to improve the

obvious signs of dementia she exhibits. I appreciate that the Aricept might not

be the drug of choice for her but that there must be something she will rally a

bit on. So far her input is part of the key. I wish I had the knowledge I have

now when my mother with PDD/LBD was reacting poorly to her meds and am taking

that knowledge forward with me for MIL.

All the best to you and your dh as you sort through this time.