To all our new memebers: Please save this..!!!!!!

[Guest guest]

For Pearl, Angie, Cesca, Shelia, , and all the other new members who have

arrived: Please save this and spend some time reading it. It is full of all

kinds of invaluable information.

I know it is long, but just try one site a day. has spent long hours

getting it all in a readable system.

We often hear that someone disconnects because they get " to much mail. " Please

know you can stay with the group and just turn your email off to your home. You

can go to Yahoo and read whatever mail you like and when ever you like,

There is also another format that will send you messages in a " Digest " form.

There will be 25 messages in one email.

Do check the bottom of a group email and it will take you into Yahoo very

easily. And you can " edit " your membership. Or use these links that

has set up to take you into Yahoo.

Hope this helps,

Hugs,

PS. I am feeling a bit overwhelmed right now as usually there are two of us

monitoring this group. And is on vacation. Just to remind the new

people, if your messages don't show up right away, that is because they need to

be approved by me before they will be sent on to the group temporarily. We do

that with all new members when they first arrive.

Donna R

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in

a nh.

She was almost 89 when she died in '02. No dx other than mine.

Re: vaca reminder

OK - leaving shortly... waiting for who went to p/u the car rental...

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To make sure you have the latest - here:

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I'm glad you found us.

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First & foremost:

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

NO�BENZODIAZEPINES (e.g.�Ativan)�

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

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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!

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Read here:

Risperdal & Haldol

Message w/ collection of articles re: above

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

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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 �

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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 �

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Evaluating Meds

Advice from a PharmaD via Lin

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

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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://www.lewybodydementia.org/AR0504BFB.php

Diagnostic Review & Medicine Management

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

and treating DLB/LBD. Includes recommended dosages.

http://www.lewybodydementia.org/Boevelink.php

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*** 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/DS/00795.html

LBD Brochure

(to print use legal size paper)

http://www.lewybodydementia.org/docs/LBDAbroch_webLGL.pdf

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" 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.lewybodydementia.org/docs/gomperts_transcript.pdf

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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)