TO: : Re: Welcome (was 'moving')

[Guest guest]

Hi!

Could you check on something for me, please? Are we advising warnings on

" atypical " antipsychotics (like Seroquel and Clozaril) or the older, " typicals "

aka " traditional " anti-psychs? Just checking: sometimes I think I just can't see

well anymore - but maybe I just can't think straight?

Also, I did check with my PharmD colleague re Seroquel and " weakness. " I'm

writing to you separately about that.

Hope all is well NE.

Lin

From: & lt;octoryrose@... & gt;

Subject: Re: Welcome (was 'moving')

To: LBDcaregivers

Date: Monday, June 2, 2008, 6:23 AM

... I never did formally welcome you to the group - welcome! And

here's my welcome links that I try and share with new members...

I'm glad you found us.

First & amp; foremost:

NO TRADITIONAL ANTIPSYCHOTICS (e.g. Haldol),

NO BENZODIAZEPINES (e.g. Ativan)

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 & amp; tons of warnings about meds that don't

work for those w/ LBD - they are extremely sensitive to meds!

Read here:

Risperdal & amp; 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 & amp; 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

Live Chat Event with Gomperts, MD

Dr. Gomperts answered your questions on this Q & amp;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 & amp; 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 & amp;

B1; Mom became my Guardian Angel on Sept. 30th, 2006.

------------------------------------

Welcome to LBDcaregivers.

[Guest guest]

Hi -

Think I'm probably just confused - and because I can't read everything at the

links, I'm probably missing key info. I do understand an alert about

antipsychotics - and Risperidone is an atypical. But so are the two anti-psychs

generally considered " safer " for LBDers. Does our info make a distinction

between the anti-psychs and then among the atypicals?

& nbsp;

I need a computer at home so I can actually read all you've put together for us.

Thanks a lot!

& nbsp;

Lin

From: & lt;octoryrose@... & gt;

Subject: TO: : Re: Welcome (was 'moving')

To: LBDcaregivers

Date: Tuesday, June 3, 2008, 4:35 AM

Hi Lin - not sure what you mean here... In my welcome links I write:

NO TRADITIONAL ANTIPSYCHOTICS (e.g. Haldol),

NO BENZODIAZEPINES (e.g. Ativan)

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 & amp;amp; tons of warnings about meds that

don't work for those w/ LBD - they are extremely sensitive to meds!

(so I mention both - one as a no-no med (traditional), one as a

caution med (atypical))

& gt;

& gt; Hi!

& gt; Could you check on something for me, please? Are we advising

warnings on " atypical " antipsychotics (like Seroquel and Clozaril) or

the older, " typicals " aka " traditional " anti-psychs? Just

checking:

sometimes I think I just can't see well anymore - but maybe I just

can't think straight?

& gt; Also, I did check with my PharmD colleague re Seroquel

and " weakness. " I'm writing to you separately about that.

& gt; Hope all is well NE.

& gt; Lin

------------------------------------

Welcome to LBDcaregivers.

[Guest guest]

Lin - thanks again for your comments - as you've seen by my last post

I updated the 'welcome links' -- the beginning now reads:

First & foremost:

NO TRADITIONAL ANTIPSYCHOTICS (e.g. Haldol, Chlorpromazine),

NO BENZODIAZEPINES (e.g. Ativan)

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

CAUTION with some ATYPICAL ANTIPSYCHOTICS (e.g. Risperidone,

Zyprexa) - but some are used w/ success (e.g. Seroquel,

Clozaril) " Start Low, Go Slow "

>

> Dear -

> My last message sounds complicated - even to me. I mean to ask if

there is value in " warning " about Risperdal while indicating the 2

atypicals considered " safe. " I think there are folks & nbsp; where I

was pre-LBD-educated: wouldn't want to discourage use of Seroquel and

Clozaril, but do want to discourage other anti-Ps including Ris. Per

my PharmD friend, Ris is still often Rx'd by unknowing MDs, when Sero

and Cloz would be far better choices.

> & nbsp;

> May be worth a try: what do you think?

> & nbsp;

> Happy Wednesday!

> & nbsp;

> Lin