Re: Heeeelp! Plus, any experience with ECT?

[Guest guest]

In a message dated 8/29/2006 3:55:43 PM Central Daylight Time,

soniagmichaels@... writes:

Hi all,

I've been reading here for a while, but have only posted once or

twice, and never yet managed to get around to posting a full intro.

Anyway, it's crisis time, so here goes--I hope it's OK to call on

your collective wisdom.

Dad is 81, Parkinson's/Dad is 81, Parkinson's/<WBR>LBD. Has had a bad t

RAPID slide in the past few months. From evening-only hallucinations

to hallucinations all day, weakness, suicidal depression, physical

weakness and an overall longing to die.

The other day, he unscrewed his flashlight and tried to drink out of

it... then said he needed to comb my hair with it... he is agitated

to the point of being almost manic, obsessively sorting through

things, telling us he HAS to fix the stair rail (it isn't broken),

HAS to install a mirror properly on the bathroom wall (it's just

fine), HAS to pack up all the furniture, etc.

Long story short(ish)--Long story short(ish)--<WBR>as of yesterday

psychiatric-psychiatric-<WBR>geriatric ward. Not sure what they can do t

he's had DREADFUL negative reactions to ALL the meds they've tried

to reduce the hallucinations with. Olazapine, Risperdal, Seroquel,

Aricept... etc... all very bad side effects, aggression, agitation,

psychotic episodes. Yesterday when we checked him in, the

psychiatrist recommended ECT--electro-psychiatrist recommended

scares the heck out of me--sounds very " one flew over the cuckoo's

nest " horrible--but he says times have changed, and it's now an

accepted method to deal with severe depression as well as

parkinson's symptoms.

So... do any of you have experience with this as a treatment for

LBD/Parkinson'LBD/Parkinson'<WBR>s? ANY ideas what we should do n

much at wits end, having coped fairly well for so long--finally

reached the stage where we can no longer cope. We're so worried that

he is a danger to himself at home with us.

Thanks for listening,

daughter and caregiver (as assist to Mom) to Bernard, 81, Parks/LBD.

[Guest guest]

, I don't blame you. I would fire the Doctor, I'm afraid. That is how

strongly I feel about ECT with LBD. I know I am no help, but I would most

assuredly get other opinions before I would allow the ECT.

Your father's brain is damaged. It is not just an electrical misfiring, or

chemical imbalance, or nerve tangles as in AD, but plain old destruction. I

have actually read that the cells are damaged so badly that there are actually

holes in the brain where it's damaged. I would NOT allow it to be damaged

anymore. At least get other opinions.

I have just read that it is being used for control of the patient, because

they don't want to deal with him. I guess if It was done like that I would

stay in control all I could just to avoid getting another treatment. But, your

father can't help his behavior

any more than a small baby that is hungry can help from crying.

It is done differently than in the dark ages, but nonetheless it is still

ECT. Some doctors still believe in it, and promote it, just like other old

carnival medicine men.

Just because they have MD or PhD or what ever, they still are human and can

have unreasonable beliefs. That doesn't make their thinking always right. Get

other opinions Please. At least make them wait.

Imogene

Caregiver for my True Texas Gentleman husband of 35 years. He has LBD with

Parkinsonism.

In a message dated 8/29/2006 3:55:43 PM Central Daylight Time,

soniagmichaels@... writes:

Hi all,

I've been reading here for a while, but have only posted once or

twice, and never yet managed to get around to posting a full intro.

Anyway, it's crisis time, so here goes--I hope it's OK to call on

your collective wisdom.

Dad is 81, Parkinson's/Dad is 81, Parkinson's/<WBR>LBD. Has had a bad t

RAPID slide in the past few months. From evening-only hallucinations

to hallucinations all day, weakness, suicidal depression, physical

weakness and an overall longing to die.

The other day, he unscrewed his flashlight and tried to drink out of

it... then said he needed to comb my hair with it... he is agitated

to the point of being almost manic, obsessively sorting through

things, telling us he HAS to fix the stair rail (it isn't broken),

HAS to install a mirror properly on the bathroom wall (it's just

fine), HAS to pack up all the furniture, etc.

Long story short(ish)--Long story short(ish)--<WBR>as of yesterday

psychiatric-psychiatric-<WBR>geriatric ward. Not sure what they can do t

he's had DREADFUL negative reactions to ALL the meds they've tried

to reduce the hallucinations with. Olazapine, Risperdal, Seroquel,

Aricept... etc... all very bad side effects, aggression, agitation,

psychotic episodes. Yesterday when we checked him in, the

psychiatrist recommended ECT--electro-psychiatrist recommended

scares the heck out of me--sounds very " one flew over the cuckoo's

nest " horrible--but he says times have changed, and it's now an

accepted method to deal with severe depression as well as

parkinson's symptoms.

So... do any of you have experience with this as a treatment for

LBD/Parkinson'LBD/Parkinson'<WBR>s? ANY ideas what we should do n

much at wits end, having coped fairly well for so long--finally

reached the stage where we can no longer cope. We're so worried that

he is a danger to himself at home with us.

Thanks for listening,

daughter and caregiver (as assist to Mom) to Bernard, 81, Parks/LBD

[Guest guest]

Hi ,

My husband has Parkinsonism/LBD and is 80 years old.

He has gone through much the same as you're explaining

about your dad. Many times a Urinary Tract Infection

causes those types of behaviors, they become very

confused and fidgety. Has Your dad been tested for

that? Their whole personality changes to combative and

agitated.

Constipation also does this type of behavior to my

husband.

While he is in the psych-geriatric ward make sure that

he is not given Haldol or Ativan. These have such

adverse reactions that they never recover from it. I

don't know much about ECT, but in the past I have read

some negative things about it here. LBD is sensitive

to many treatments and many only make LBD worse

instead of better. It is very hard to cope with in

trying to find things to make life easier, because

most don't work. With LBD less is best as stated here

many times.

I urge you to get a UTI Urinary Tract Infection Test

done for him, if he hasn't had one done already. It

could be as simple as that. UTIs are very common with

LBD. Jan Colello

--- s wrote:

> Hi all,

> I've been reading here for a while, but have only

> posted once or

> twice, and never yet managed to get around to

> posting a full intro.

> Anyway, it's crisis time, so here goes--I hope it's

> OK to call on

> your collective wisdom.

>

> Dad is 81, Parkinson's/LBD. Has had a bad time of it

> lately, and a

> RAPID slide in the past few months. From

> evening-only hallucinations

> to hallucinations all day, weakness, suicidal

> depression, physical

> weakness and an overall longing to die.

>

> The other day, he unscrewed his flashlight and tried

> to drink out of

> it... then said he needed to comb my hair with it...

> he is agitated

> to the point of being almost manic, obsessively

> sorting through

> things, telling us he HAS to fix the stair rail (it

> isn't broken),

> HAS to install a mirror properly on the bathroom

> wall (it's just

> fine), HAS to pack up all the furniture, etc.

>

> Long story short(ish)--as of yesterday afternoon,

> he's in the

> psychiatric-geriatric ward. Not sure what they can

> do to him, since

> he's had DREADFUL negative reactions to ALL the meds

> they've tried

> to reduce the hallucinations with. Olazapine,

> Risperdal, Seroquel,

> Aricept... etc... all very bad side effects,

> aggression, agitation,

> psychotic episodes. Yesterday when we checked him

> in, the

> psychiatrist recommended ECT--electro-convlusive

> therapy. This

> scares the heck out of me--sounds very " one flew

> over the cuckoo's

> nest " horrible--but he says times have changed, and

> it's now an

> accepted method to deal with severe depression as

> well as

> parkinson's symptoms.

>

> So... do any of you have experience with this as a

> treatment for

> LBD/Parkinson's? ANY ideas what we should do next?

> We are pretty

> much at wits end, having coped fairly well for so

> long--finally

> reached the stage where we can no longer cope. We're

> so worried that

> he is a danger to himself at home with us.

>

> Thanks for listening,

>

> daughter and caregiver (as assist to Mom) to

> Bernard, 81, Parks/LBD.

>

>

>

>

>

>

>

>

> Welcome to LBDcaregivers.

>

>

>

[Guest guest]

Several years ago my friends elderly father became severly depressed and

tried to kill himself. Various meds were tried but he had no improvement.

Ultimately ECT was tried and he benefitted greatly from it. I don't know if it

is

right for LBD. I would be very cautious. I would read up on it. It doesn't seem

like it would be the right thing for a brain that already has damage.

This isn't of much help I know. Just read up on it before you decide.

Take Care

[Guest guest]

It amazes me that any doctor would recommend assaulting a patient.

Make no mistake - ECT is a violent attack on the brain.

At one time doctors recommended a complete hystorectomy to treat

depression and anxiety. Personally, I fired a doctor for using a cold

speculum.

Family and patient have the right and the responsibility to refuse

abusive treatment.

Gee, here I've spent the last couple of hours trying tone down my

reply, and this is the best I could do.

[Guest guest]

ECT = Electro Convulsive Theropy... Shock treatments ? OMG

I can't even imagine how that could help anything with LBD.

The doctor that suggested it is probably in personal need of it. Him or

her-self.

What a sicko.

Dann

loch_dhu wrote:

It amazes me that any doctor would recommend assaulting a patient.

Make no mistake - ECT is a violent attack on the brain.

At one time doctors recommended a complete hystorectomy to treat

depression and anxiety. Personally, I fired a doctor for using a cold

speculum.

Family and patient have the right and the responsibility to refuse

abusive treatment.

Gee, here I've spent the last couple of hours trying tone down my

reply, and this is the best I could do.

[Guest guest]

Marci's mom had an ECT -- from her post it sounds like it led to rapid

decline - read her post:

http://health.groups.yahoo.com/group/LBDcaregivers/message/53803

[Guest guest]

sonia,

i would nver allow an ect to be done on an lbd patient. lbd has notable

brainshrinkage due to the damaged and dead brain cells, you revive dead parts

of the brain by eect althouth i would do it if i thought there was a minute

chance of helping. but there isnt, lbd is very very different from other

dementias. i am afrid, truly afradi that this would be the death of your dad,

if not in body, althouth i fear that too, but totally in brain as well, please

reconsidcer this and dont do it, thanks sharon m

---- Iward27663@... wrote:

In a message dated 8/29/2006 3:55:43 PM Central Daylight Time,

soniagmichaels@... writes:

Hi all,

I've been reading here for a while, but have only posted once or

twice, and never yet managed to get around to posting a full intro.

Anyway, it's crisis time, so here goes--I hope it's OK to call on

your collective wisdom.

Dad is 81, Parkinson's/Dad is 81, Parkinson's/<WBR>LBD. Has had a bad t

RAPID slide in the past few months. From evening-only hallucinations

to hallucinations all day, weakness, suicidal depression, physical

weakness and an overall longing to die.

The other day, he unscrewed his flashlight and tried to drink out of

it... then said he needed to comb my hair with it... he is agitated

to the point of being almost manic, obsessively sorting through

things, telling us he HAS to fix the stair rail (it isn't broken),

HAS to install a mirror properly on the bathroom wall (it's just

fine), HAS to pack up all the furniture, etc.

Long story short(ish)--Long story short(ish)--<WBR>as of yesterday

psychiatric-psychiatric-<WBR>geriatric ward. Not sure what they can do t

he's had DREADFUL negative reactions to ALL the meds they've tried

to reduce the hallucinations with. Olazapine, Risperdal, Seroquel,

Aricept... etc... all very bad side effects, aggression, agitation,

psychotic episodes. Yesterday when we checked him in, the

psychiatrist recommended ECT--electro-psychiatrist recommended

scares the heck out of me--sounds very " one flew over the cuckoo's

nest " horrible--but he says times have changed, and it's now an

accepted method to deal with severe depression as well as

parkinson's symptoms.

So... do any of you have experience with this as a treatment for

LBD/Parkinson'LBD/Parkinson'<WBR>s? ANY ideas what we should do n

much at wits end, having coped fairly well for so long--finally

reached the stage where we can no longer cope. We're so worried that

he is a danger to himself at home with us.

Thanks for listening,

daughter and caregiver (as assist to Mom) to Bernard, 81, Parks/LBD.

[Guest guest]

Unfortunately, the decision isn't mine to make, though I'm very nervous

about the whole prospect. For one thing, the doctors are still wavering--LBD

or some other dementia, or just PD related confusion and depression? For

another thing, I simply don't have the authority--my mom is the " decider " in

this case. I have asked her to hold off until I can do some further

research, anyway, and I will probably also try to have a private chat with

the primary psychiatrist before anything proceeds. At this point, since Dad

has reacted so badly to ALL medications, the psychiatrists seem to think

that this is the " last ditch " option. They both say that there is nothing

more they can try in terms of medications.

Thanks again,

>

>Reply-To: LBDcaregivers

>To: LBDcaregivers

>Subject: Re: Heeeelp! Plus, any experience with ECT?

>Date: Wed, 30 Aug 2006 20:33:19 -0400

>

>sonia,

>i would nver allow an ect to be done on an lbd patient. lbd has notable

>brainshrinkage due to the damaged and dead brain cells, you revive dead

>parts of the brain by eect althouth i would do it if i thought there was a

>minute chance of helping. but there isnt, lbd is very very different

>from other dementias. i am afrid, truly afradi that this would be the

>death of your dad, if not in body, althouth i fear that too, but totally in

>brain as well, please reconsidcer this and dont do it, thanks sharon m

>---- Iward27663@... wrote:

>

>In a message dated 8/29/2006 3:55:43 PM Central Daylight Time,

>soniagmichaels@... writes:

>

>

>

>

>Hi all,

>I've been reading here for a while, but have only posted once or

>twice, and never yet managed to get around to posting a full intro.

>Anyway, it's crisis time, so here goes--I hope it's OK to call on

>your collective wisdom.

>

>Dad is 81, Parkinson's/Dad is 81, Parkinson's/<WBR>LBD. Has had a bad t

>RAPID slide in the past few months. From evening-only hallucinations

>to hallucinations all day, weakness, suicidal depression, physical

>weakness and an overall longing to die.

>

>The other day, he unscrewed his flashlight and tried to drink out of

>it... then said he needed to comb my hair with it... he is agitated

>to the point of being almost manic, obsessively sorting through

>things, telling us he HAS to fix the stair rail (it isn't broken),

>HAS to install a mirror properly on the bathroom wall (it's just

>fine), HAS to pack up all the furniture, etc.

>

>Long story short(ish)--Long story short(ish)--<WBR>as of yesterday

>psychiatric-psychiatric-<WBR>geriatric ward. Not sure what they can do t

>he's had DREADFUL negative reactions to ALL the meds they've tried

>to reduce the hallucinations with. Olazapine, Risperdal, Seroquel,

>Aricept... etc... all very bad side effects, aggression, agitation,

>psychotic episodes. Yesterday when we checked him in, the

>psychiatrist recommended ECT--electro-psychiatrist recommended

>scares the heck out of me--sounds very " one flew over the cuckoo's

>nest " horrible--but he says times have changed, and it's now an

>accepted method to deal with severe depression as well as

>parkinson's symptoms.

>

>So... do any of you have experience with this as a treatment for

>LBD/Parkinson'LBD/Parkinson'<WBR>s? ANY ideas what we should do n

>much at wits end, having coped fairly well for so long--finally

>reached the stage where we can no longer cope. We're so worried that

>he is a danger to himself at home with us.

>

>Thanks for listening,

>

>daughter and caregiver (as assist to Mom) to Bernard, 81, Parks/LBD.

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

,

My mom has had a series of ECT treatments because they didn't

know what else to do. I was totally against them but I am not sure

if used appropriately might help in some aspects.

My Mom's mobility was extremely limited prior to her first set of ECT

treatments. She could barely move and her hands were mainly at her

mid stomach area. They scheduled her for two weeks of treatments,

every other day to start with subsequent treatments twice a week,

down to once a week.

After her first two or three treatments she was actually moving much

better and her disposition was also improved. She could also talk easier.

I have no idea why but she did do well...until they kept giving her

treatments. Then they seemed to have a reverse effect. Her memory became worse

after they kept

giving her treatments and her posture became tilted to one side. Finally they

stopped and she was better than when she came in, but I think they should have

stopped sooner.

After she started getting worse with her mobility and actually her anxiety

again,

they did another set of ECT treatments. Same things happened, she initially

improved but they overdid them. She ended up getting one recently and her

mobility improved, her anxiety decreased but her memory became worse. I don't

know what would have happened if they stopped sooner when she felt good.

As her anxiety is getting bad again, as her mobility and wording, she is

scheduled for another treatment in two weeks, although I am begging my dad

not to because at this point I don't see why. My sister feels like they are a

trade

off; more mobility, less anxiety, less memory.

My mom was diagnosed with LBD in August of 2005 and received her first

series

of ECT treatments in December. She is quickly going down hill although I

don't know

if that is the disease's progression or from the ECT treatments.

My experience is that initially they did help but they gave her a few too

many.

I have heard not to give LBD patients ECT treatments. I wish I could offer you

a medical perspective but I hope this helps.

Marcie

Daughter to my best friend, my Mom, diagnosed with LB August 2005. The disease

is rapidly getting worse.

[Guest guest]

>> Dad is 81, Parkinson's/Dad is 81, Parkinson's/<WBR>LBD. Has had a bad t

>> RAPID slide in the past few months. From evening-only hallucinations

>> to hallucinations all day, weakness, suicidal depression, physical

>> weakness and an overall longing to die.

>>

>> The other day, he unscrewed his flashlight and tried to drink out of

>> it... then said he needed to comb my hair with it... he is agitated

>> to the point of being almost manic, obsessively sorting through

>> things, telling us he HAS to fix the stair rail (it isn't broken),

>> HAS to install a mirror properly on the bathroom wall (it's just

>> fine), HAS to pack up all the furniture, etc.

>>

As sad as this is - I have to tell you it made me smile - as my Dad

used to do the same thing. I can't tell you how many

flashlights/tape-records/clocks etc he " fixed " to the point they never

worked again (I wouldn't be surprised if he didn't even mix up parts

between different electronics ! LOL).

This most be an LBD thing ?

I'm sorry you are going through this - its and awful road and

unfortunately its down hill pretty quickly sometimes.

I doin't know anything about ECT - but it sounds scary !

HUGS

Donna

cg with Mom to Dad - who passed April 2004 from sepsis !

[Guest guest]

Right on, Marcie!

Imogene

In a message dated 8/31/2006 8:43:50 PM Central Daylight Time,

jchristensen1953@... writes:

One thing I think we

all have learned is that doctors are not always right,

even though they may think so!

--- Marci <_willenbrinbrink@willenbrinwil_

(mailto:willenbrinbrink@...) > wrote:

[Guest guest]

Marci: Don't know if you read this on my other posts,

but one of the things ECT does to people is affect the

memory. Since that is already a problem, I would

think it would not be the thing to do. Why don't you

ask the doctor(s) who are doing it what their reason

is, as like you and many others, I've never heard of

doing it for any kind of dementia. In years past, it

was given for depression, and the reason they thought

it worked was that it stimulated the electrical

impulses in the brain. With the advent of

antidepressants, which worked much better with fewer

side effects, ECT became quite extinct, although I

have heard of it being used in very severe cases of

depression if drugs don't work. One thing I think we

all have learned is that doctors are not always right,

even though they may think so!

--- Marci wrote:

> ,

> My mom has had a series of ECT treatments

> because they didn't

> know what else to do. I was totally against them

> but I am not sure

> if used appropriately might help in some aspects.

>

> My Mom's mobility was extremely limited prior

> to her first set of ECT

> treatments. She could barely move and her hands

> were mainly at her

> mid stomach area. They scheduled her for two

> weeks of treatments,

> every other day to start with subsequent

> treatments twice a week,

> down to once a week.

> After her first two or three treatments she was

> actually moving much

> better and her disposition was also improved. She

> could also talk easier.

> I have no idea why but she did do well...until

> they kept giving her treatments. Then they seemed

> to have a reverse effect. Her memory became worse

> after they kept

> giving her treatments and her posture became

> tilted to one side. Finally they

> stopped and she was better than when she came in,

> but I think they should have

> stopped sooner.

> After she started getting worse with her

> mobility and actually her anxiety again,

> they did another set of ECT treatments. Same

> things happened, she initially

> improved but they overdid them. She ended up

> getting one recently and her

> mobility improved, her anxiety decreased but her

> memory became worse. I don't

> know what would have happened if they stopped

> sooner when she felt good.

> As her anxiety is getting bad again, as her

> mobility and wording, she is

> scheduled for another treatment in two weeks,

> although I am begging my dad

> not to because at this point I don't see why. My

> sister feels like they are a trade

> off; more mobility, less anxiety, less memory.

> My mom was diagnosed with LBD in August of 2005

> and received her first series

> of ECT treatments in December. She is quickly

> going down hill although I don't know

> if that is the disease's progression or from the

> ECT treatments.

> My experience is that initially they did help

> but they gave her a few too many.

> I have heard not to give LBD patients ECT

> treatments. I wish I could offer you a medical

> perspective but I hope this helps.

>

> Marcie

>

> Daughter to my best friend, my Mom, diagnosed with

> LB August 2005. The disease

> is rapidly getting worse.

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________