RE: Marcie from Sandiel

[Guest guest]

Marcie- Thank you for your positive wishes. I really appreciate it. I

remember when my brother turned 48 it seemed like such a milestone, then came my

turn. Whew, glad that's over. :-) Hoping all is well with you and your

family! Big hugs- SandieDes Moines, IAdad, Merle, passed from LBD 9-20-02, age

65

----- 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

<http://www.lbda.org/index.cfm?fuseaction=product.print

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

& product_id=10255>

& 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=newss

earch

> > >

> > > 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://interactive.snm.org/index.cfm?PageID=7405

<http://interactive.snm.org/index.cfm?PageID=7405

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

& 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' & ndash; all

these

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

> > > organized into folders & ndash; 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.

> > >

> > > ------------------------------------

> > >

> > > Welcome to LBDcaregivers.

> > >

> > >