Welcome Sheryl

[Guest guest]

Welcome Sheryl - the place no one wants to be, but grateful for it

anyway... Could you give more info about your mom? What meds is she on?

Is she seeing a LBD specialist? Is she home w/ your dad?

Here's my 'welcome post':

I'm glad you found us.

First & foremost:

NO TRADITIONAL ANTIPSYCHOTICS (e.g. Haldol),

NO BENZODIAZEPINES (e.g. Ativan)

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

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

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

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

Evaluating Meds

Advice from a PharmaD via Lin

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

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

*** 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

" 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 on this Q & A session from March

2007 http://www.lewybodydementia.org/docs/gomperts_transcript.pdf

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)

>

> Thanks for allowing me membership. I am seeking help more for my dad

(the caregiver). Thought I'd give this a whirl for a while, and if I

think he could benefit from it, I'll forward on membership info to him.

>

> ~Sheryl Orman

> Islamorada, Florida Keys

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