Welcome New Members

[Guest guest]

I'm glad you found us.

First & foremost:

NO TRADITIONAL ANTIPSYCHOTICS (e.g. Haldol, Chlorpromazine),

NO ANTICHOLINERGIC DRUGS (e.g. Benadryl, Tylenol PM, Detrol, Enablex)

EXTREME CAUTION with MOST BENZODIAZEPINES (e.g. Ativan)

EXTREME CAUTION with some ATYPICAL ANTIPSYCHOTICS (e.g. Risperidone, Zyprexa) -

but some are used w/ success (e.g. Seroquel, Clozaril) " Start Low, Go Slow "

Take a moment to post a possible med. before trying - this board has an archives

section w/ tons & tons of warnings about meds that don't work for those w/ LBD -

they are extremely sensitive to meds!

Read here:

Risperdal & Haldol

Message w/ collection of articles re: above

http://health.groups.yahoo.com/group/LBDcaregivers/message/70932

2006, July 2 -- ADVERSE EFFECTS OF ANTIPSYCHOTICS ARE 'TIP OF THE ICEBERG'

Letter to the Editor - by Louis R. Caplan, MD

http://health.groups.yahoo.com/group/LBDcaregivers/message/73781

Dementia With Lewy Bodies: A Review Of Clinical

Benzodiazepines (e.g. Ativan) may negatively affect cognition and produce

sedation, paradoxic agitation and increased risk of falls in the elderly

http://tinyurl.com/2n54qj

Why such strong feelings about benzos?

Message by , also includes info re: an exception to the no benzo warning,

Klonopin, that has been used with success for RBD (REM Behavior Disorder) by Dr.

Boeve.

http://health.groups.yahoo.com/group/LBDcaregivers/message/61849

A Lewy Body patient

Lewy Body symptoms make my life one of constant frustration.

by Shirley Lay

http://www.care-givers.com/DBArticles/pages/viewarticle.php?id=730

Evaluating Meds

Advice from a PharmaD via Lin

http://health.groups.yahoo.com/group/LBDcaregivers/message/75551

Legal Stuff - get it done NOW

http://health.groups.yahoo.com/group/LBDcaregivers/files/

scroll down to this document:

The Business of Dementia.doc

The 'legal' things you need to know about

Top links to important LBD resources (IMHO)

A Must Read by Dr. Bradley Boeve

A Comprehensive Approach to Treatment can Significantly Improve the

Quality of Life of Patients with the Lewy body dementias.

http://tinyurl.com/c2m5l6

Diagnostic Review & Medicine Management

by Bradley F. Boeve, MD (October 2004) Physicians guide to diagnosing

and treating DLB/LBD. Includes recommended dosages.

http://tinyurl.com/bhppca

An Introduction to Lewy Body Dementia - for newly diagnosed patients and their

family

http://www.lbda.org/index.cfm?fuseaction=product.print & product_id=10255

*** 2006, September 08 -- Lewy body dementia

From MayoClinic.com, Special to CNN.com. Norma says, " ...this is the most

detailed, accurate information I've ever read about LBD. I think it should be

sent to all new caregivers AND doctors who aren't clear. Thoughts everyone? "

Keli says, " Definately yes!!! This is very informative yet not overwhelming. It

can easily be shared with others. I intend to have my husband and children read

it, and hopefully my moms dr's as well. Very good information. "

http://www.cnn.com/HEALTH/library/lewy-body-dementia/DS00795.html?iref=newssearc\

h

LBD Brochure

(to print use legal size paper)

http://www.lbda.org/feature/1925/facts-about-lbd-brochure.htm

" Difficulties in Diagnosing Lewy Body Dementia "

by T. MD

http://www.youtube.com/LBDAtv

Live Chat Event with Gomperts, MD

Dr. Gomperts answered your questions in this Q & A session from March 2007

http://www.lbda.org/category/3515/chat-transcripts.htm

If your LO hasn't been diagnosed yet, make sure they get a FDG-PET assessment.

http://interactive.snm.org/index.cfm?PageID=7405 & RPID=627

And a summary of what's on this board:

Main board:

http://groups.yahoo.com/group/LBDcaregivers/

(Read your emails via the board vs. your `in box'. And get into all

the different sections that are available on the website. Search

archived messages here.)

Links Section:

http://health.groups.yahoo.com/group/LBDcaregivers/links

(Tons of links that is continuously a `work in progress' – all these

links are useful to the caregiver. A variety of categories neatly

organized into folders – what topic are you interested in? Find the

folder and within it find numerous links to other websites for

additional information.)

Files Section:

http://health.groups.yahoo.com/group/LBDcaregivers/files/

(Read other caregiver's stories, read about the good & bad drugs

here, print a " companion card " from here (cards to hand out in public

areas about your LO's behavior), find the locations of other

caregivers who are possibility living in your immediate area, FAQ

document, LBD Phases by LBD Caring Spouses, etc.)

Database Section:

http://health.groups.yahoo.com/group/LBDcaregivers/database

(Suggested reading, learn the common denominators about our loved

ones, medical referrals, nursing home referrals, bibliography of LBD

in literature and film, etc.)

Photos Section:

http://health.ph.groups.yahoo.com/group/LBDcaregivers/photos

(Put a face to a name.)

Polls Section:

http://health.groups.yahoo.com/group/LBDcaregivers/polls

(Several polls running re: LBD)

; loving daughter of Maureen of Boston, MA; dx'd with LBD in 2/2006

(confirmed via brain biopsy;) fell victim to rapid decline from Risperidone; Mom

fell into the 50% category of those who could not handle antipsychotics; Was

successful on Celexa, Exelon, ALA & B1; Mom became my Guardian Angel on Sept.

30th, 2006.

[Guest guest]

Even if the hospital knows, some staff - even doctors - haven't gotten the

word. Do you, or someone else in the family, have your mother's Power of

Attorney? Has your mom written a medical Directive (also called a living

will) in which she placed medical decisions in the hands of a family

member? If so, some hospitals (if they recognize the directive - most ERs

don't) will include in the chart that the medical representative must be

consulted before a new medication is administered.

HOWEVER, everything depends on the hospital's assigned doctor (not always

your own doctor) knowing what he/she is doing.

I used to go easy on the hospital my mom had been in, thinking we didn't

have the LBD diagnosis until afterward. But now I remember very clearly

that we did and that I discussed it with all shifts and her assigned

doctor. Yet, in a short time at night when no family member was there to

object, they gave her Haldol. It was weeks before she could even stay awake

for any period of time and she never recovered from it. We took Mom to a

different hospital the next time a fixable physical problem affected her

and there was a world of difference. Not only did they know the precautions

to take with LBD, they put her in a private room and let us stay with her

24/7. They even brought in a mattress so that whoever was with her at night

could sleep as well as possible. They wanted us there to help Mom

communicate.

Wherever and whenever you can, choose hospitals carefully.

Kathy

> **

>

>

> my mother was diagnosed with LBD, in nov. 2011, shes been in the hospital

> for the last 2 weeks, they have her on ativan, now i'm concerned about

> this, doesnt the hospital know what LBD patients can have and not have?

>

>

> To: LBDcaregivers

> Sent: Friday, December 9, 2011 7:40 AM

> Subject: Welcome New Members

>

>

>

> I'm glad you found us.

>

> First & foremost:

>

> NO TRADITIONAL ANTIPSYCHOTICS (e.g. Haldol, Chlorpromazine),

> NO ANTICHOLINERGIC DRUGS (e.g. Benadryl, Tylenol PM, Detrol, Enablex)

>

> EXTREME CAUTION with MOST BENZODIAZEPINES (e.g. Ativan)

> EXTREME CAUTION with some ATYPICAL ANTIPSYCHOTICS (e.g. Risperidone,

> Zyprexa) - but some are used w/ success (e.g. Seroquel, Clozaril) " Start

> Low, Go Slow "

>

> Take a moment to post a possible med. before trying - this board has an

> archives section w/ tons & tons of warnings about meds that don't work for

> those w/ LBD - they are extremely sensitive to meds!

>

> Read here:

> Risperdal & Haldol

> Message w/ collection of articles re: above

> http://health.groups.yahoo.com/group/LBDcaregivers/message/70932

>

> 2006, July 2 -- ADVERSE EFFECTS OF ANTIPSYCHOTICS ARE 'TIP OF THE ICEBERG'

> Letter to the Editor - by Louis R. Caplan, MD

> http://health.groups.yahoo.com/group/LBDcaregivers/message/73781

>

> Dementia With Lewy Bodies: A Review Of Clinical

> Benzodiazepines (e.g. Ativan) may negatively affect cognition and produce

> sedation, paradoxic agitation and increased risk of falls in the elderly

> http://tinyurl.com/2n54qj

>

> Why such strong feelings about benzos?

> Message by , also includes info re: an exception to the no benzo

> warning, Klonopin, that has been used with success for RBD (REM Behavior

> Disorder) by Dr. Boeve.

> http://health.groups.yahoo.com/group/LBDcaregivers/message/61849

>

> A Lewy Body patient

> Lewy Body symptoms make my life one of constant frustration.

> by Shirley Lay

> http://www.care-givers.com/DBArticles/pages/viewarticle.php?id=730

>

> Evaluating Meds

> Advice from a PharmaD via Lin

> http://health.groups.yahoo.com/group/LBDcaregivers/message/75551

>

> Legal Stuff - get it done NOW

> http://health.groups.yahoo.com/group/LBDcaregivers/files/

> scroll down to this document:

> The Business of Dementia.doc

> The 'legal' things you need to know about

>

> Top links to important LBD resources (IMHO)

>

> A Must Read by Dr. Bradley Boeve

> A Comprehensive Approach to Treatment can Significantly Improve the

> Quality of Life of Patients with the Lewy body dementias.

> http://tinyurl.com/c2m5l6

>

> Diagnostic Review & Medicine Management

> by Bradley F. Boeve, MD (October 2004) Physicians guide to diagnosing

> and treating DLB/LBD. Includes recommended dosages.

> http://tinyurl.com/bhppca

>

> An Introduction to Lewy Body Dementia - for newly diagnosed patients and

> their family

> http://www.lbda.org/index.cfm?fuseaction=product.print & product_id=10255

>

> *** 2006, September 08 -- Lewy body dementia

> From MayoClinic.com, Special to CNN.com. Norma says, " ...this is the most

> detailed, accurate information I've ever read about LBD. I think it should

> be sent to all new caregivers AND doctors who aren't clear. Thoughts

> everyone? " Keli says, " Definately yes!!! This is very informative yet not

> overwhelming. It can easily be shared with others. I intend to have my

> husband and children read it, and hopefully my moms dr's as well. Very good

> information. "

>

>

http://www.cnn.com/HEALTH/library/lewy-body-dementia/DS00795.html?iref=newssearc\

h

>

> LBD Brochure

> (to print use legal size paper)

> http://www.lbda.org/feature/1925/facts-about-lbd-brochure.htm

>

> " Difficulties in Diagnosing Lewy Body Dementia "

> by T. MD

> http://www.youtube.com/LBDAtv

>

> Live Chat Event with Gomperts, MD

> Dr. Gomperts answered your questions in this Q & A session from March 2007

> http://www.lbda.org/category/3515/chat-transcripts.htm

>

> If your LO hasn't been diagnosed yet, make sure they get a FDG-PET

> assessment.

> http://interactive.snm.org/index.cfm?PageID=7405 & RPID=627

>

> And a summary of what's on this board:

> Main board:

> http://groups.yahoo.com/group/LBDcaregivers/

> (Read your emails via the board vs. your `in box'. And get into all

> the different sections that are available on the website. Search

> archived messages here.)

>

> Links Section:

> http://health.groups.yahoo.com/group/LBDcaregivers/links

> (Tons of links that is continuously a `work in progress' – all these

> links are useful to the caregiver. A variety of categories neatly

> organized into folders – what topic are you interested in? Find the

> folder and within it find numerous links to other websites for

> additional information.)

>

> Files Section:

> http://health.groups.yahoo.com/group/LBDcaregivers/files/

> (Read other caregiver's stories, read about the good & bad drugs

> here, print a " companion card " from here (cards to hand out in public

> areas about your LO's behavior), find the locations of other

> caregivers who are possibility living in your immediate area, FAQ

> document, LBD Phases by LBD Caring Spouses, etc.)

>

> Database Section:

> http://health.groups.yahoo.com/group/LBDcaregivers/database

> (Suggested reading, learn the common denominators about our loved

> ones, medical referrals, nursing home referrals, bibliography of LBD

> in literature and film, etc.)

>

> Photos Section:

> http://health.ph.groups.yahoo.com/group/LBDcaregivers/photos

> (Put a face to a name.)

>

> Polls Section:

> http://health.groups.yahoo.com/group/LBDcaregivers/polls

> (Several polls running re: LBD)

>

> ; loving daughter of Maureen of Boston, MA; dx'd with LBD in

> 2/2006 (confirmed via brain biopsy;) fell victim to rapid decline from

> Risperidone; Mom fell into the 50% category of those who could not handle

> antipsychotics; Was successful on Celexa, Exelon, ALA & B1; Mom became my

> Guardian Angel on Sept. 30th, 2006.

>

>