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I posted the wendie plan. You find your point range, and then eat the amount of

points she lists per day. The cycle runs for a week, then you start over. It's

really very simple. So...I remember you had a day recently where you went

over on points. If you were to follow the Wendie plan, you could have one day

with a high point value. If weekends are your downfall, you could start the

plan so that your high point day hit the weekend.

Lyn

Re: Thank you

Could someone tell me exactly how the Wendi plan works,

thanks a bunch,

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  • 6 years later...
Guest guest

Matt, welcome to the board - the place no one wants to be, but

grateful for it anyway. I'm going to provide you below w/ a # of

links (my 'welcome links') and hope the info will be useful to you.

Here you go:

I'm glad you found us.

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 "

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

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

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.lewybodydementia.org/AR0504BFB.php

Diagnostic Review & 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

" 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.lewybodydementia.org/docs/gomperts_transcript.pdf

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' – 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.

>

> Hello ,

>  

>  My name is Matt. My father was diagnosed with lbd within the last

year. It has been difficult for my mother who is his main caregiver.I

need to find more ways to help her deal with what lies ahead. I

thought joining this group would be a good way to learn more ways to

do that.

>  

> Thank you,

> Matt Pacell

>

>

>

>

>

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Guest guest

Hi, Matt!

Welcome to the club none of us ever wanted to join! You'll find a LOT of

support and information here. These wonderful people have been more help to

me than any doctor.

  

Gladys Stefany

Milford, Pike County, PA

Very Proud Daughter of Grace, age 76 - appears to be in between stages 3 and

4

Diagnosed with " probable " Diffuse Lewy Body Disease

Current Meds: Exelon Patch, Namenda, Nexium, Parcopa, Premarin, Synthroid,

Vytorin, Seroquel, and Zoloft

-- thank you

Hello ,

My name is Matt. My father was diagnosed with lbd within the last year. It

has been difficult for my mother who is his main caregiver.I need to find

more ways to help her deal with what lies ahead. I thought joining this

group would be a good way to learn more ways to do that.

Thank you,

Matt Pacell

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Guest guest

Welcome to the group Matt!

Courage

thank you

Hello ,

My name is Matt. My father was diagnosed with lbd within the last year. It

has been difficult for my mother who is his main caregiver.I need to find more

ways to help her deal with what lies ahead. I thought joining this group would

be a good way to learn more ways to do that.

Thank you,

Matt Pacell

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Guest guest

Welcome, Matt! Feel free to ask any questions that you have, people are

always more than willing to share their experiences and knowledge here as

well as support :).

His,

Sherry

www.owly.net

daughter of , (mis?)diagnosed with AD in 2005, descent slowed by

Aricept; diagnosed with LBD March 2008, in a wonderful NH 1/2 mile from my

house. We're learning to live with Lewy...

----- Original Message -----

My name is Matt. My father was diagnosed with lbd within the last year. It

has been difficult for my mother who is his main caregiver.I need to find

more ways to help her deal with what lies ahead. I thought joining this

group would be a good way to learn more ways to do that.

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Guest guest

Welcome Matt,

just sent you our list of good info. You will find lots of links if

you go to the bottom of this message.

The blue words at the bottom will take you into all our links. Photos,

membership, messages and all.

Hope we can be of help. Mostly it comes down to meds a lot of the time.

Hugs,

Donna R

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in

a nh.

She was almost 89 when she died in '02. No dx other than mine.

thank you

Hello ,

�

�My name is Matt. My father was diagnosed with lbd within the last year. It

has been difficult for my mother who is his main caregiver.I need to find more

ways to help her deal with what lies ahead. I thought joining this group would

be a good way to learn more ways to do that.

�

Thank you,

Matt Pacell

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Guest guest

hi matt,

welcome to our family, yes we are a big loving family, many of us like myself

have already traveled the lbd journey and are here to help others on their

jounreys and many others are in various places along the way. 

there are a few rules per se, that you need to understand about lbd,  one is

think like a turtle go low and go slow.meaning our lo's *(loved ones) cannot

handle high dosages of medicines and any changes in meds needs to be done

slowly.  also medicnes that work for some of our loved ones do not always work

for others, every lbd patient is different and reacts different to medicines and

situationsl.  

also, if all the legal paperwork is not done for your dad, then it needs to be

done now. and please go ahead and do for your mom too.  the number one rule for

the cg (caregiver) is that he/she must take care of herself firsst andf

oremost.  The more lbd progresses the more mood swings, and the less

communicative your dad will become and the more reliant on your mom.  if

possible i would call you local aouncil of aging and your area of elders affairs

offices and see if your parents qualify for any programs especially since it is

the start of a nyew fiscal year for the government. your parents and you have

paid taxes for years and these are benefits taht they are entitled to and take

advantage of any program that you can get on to.  The more help you can get your

mom, the easier it will be for her, she will still be #1 caregiver but if you

can get someone else to bathe him everyday, she doesnt have to try to support

and bathe him but be there to take

care of him when he gets back in bed.

please tell us about your dad and mom, what is your dad capable of doing and not

doing. how is your mom holding out during this. how is her health??? 

we are glad you found us,  hugs. sharon

Subject: thank you

To: LBDcaregivers

Date: Wednesday, July 30, 2008, 9:42 AM

Hello ,

 

 My name is Matt. My father was diagnosed with lbd within the last year. It has

been difficult for my mother who is his main caregiver.I need to find more ways

to help her deal with what lies ahead. I thought joining this group would be a

good way to learn more ways to do that.

 

Thank you,

Matt Pacell

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  • 3 weeks later...

I everyone, I wanted to thank you all for the prayers and caring  support I

recieved..Im still here and still digging in.Mom is about the same and life is

up and down but I know I will get by with all of you in my corner.Huge hugs to

all   Ron

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