RE: For Sandiel

[Guest guest]

Hi Sandie,

Wow, only 48! I don't know how you handled it all. It must seem like a

milestone with all you've been through. Wishing you the best in life with

lots of joy from here on out. You really deserve it.

Marcie, daughter of Marjorie, age 82, dx 5/2011

_____

From: LBDcaregivers [mailto:LBDcaregivers ]

On Behalf Of Sandie /

Sent: Sunday, January 15, 2012 8:59 PM

To: LBDcaregivers

Subject: RE: For Marcie and All

Hi Marcie- Thank you for your reply. I turned 48 in July last year and I

tell you it was a milestone. I couldn't wait to get away from 47. Just seems

like a marked age. It's coming up on 29 years since my mom passed and 10

years for my dad. I remember both passings like it were yesterday. I

remember posting when my dad passed...Dad Won His Battle. :-) I don't think

you sound selfish. I think everyone has a limit to what they can handle. I

was the carer for my dad even though I have an older brother. He was busy a

lot and couldn't seem to handle very much of the caring. I just did it. I

drove my dad to hospitals, to doctor visits, rode in ambulances with my dad

fighting and flailing, spent the night in chairs so dad wasn't alone, oh how

the list goes on and on. We just do what we need to do and with what we are

able to handle. I loved your story how cleaning gives your mom peace and you

feel you are honoring her in cleaning. I think that is brilliant. I agree

with Jan that each person, whether LBD or not, has a niche and we can

connect with them if we join them in their niche. Great job for doing that

for your mom! You will make it through this. Many wishes, prayers, and hugs

to you- 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.

> > >

> > >