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://www.lbda.org/content/lbd-requires-comprehensive-treatment-approach

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/feature/1942/an-introduction-to-lewy-body-dementia.htm

*** 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?i\

ref=newssearch

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/node/597

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

http://www.news-medical.net/news/2005/06/20/11190.aspx

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.