Re: - Welcome New Members

[Guest guest]

Hi - My heart goes out to you. I include you, and your , in my

prayers. I agree with you, our loved ones are in there on some level. My dad

wasn't able to speak the last 2 1/2 years of his life yet his eyes would dance

when I walked in the room. Then for a few weeks when I had Exelon started he

was briefly able to sort of speak. Again, it was brief but I was thrilled I was

able to hear him again. That didn't last long yet confirmed to me that my dad

was and had been locked inside himself for quite some time. Sending you many

hugs and keeping you and in my prayers- 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 & 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/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 & 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.

> >

> >