Re: Welcome Jannis

[Guest guest]

Welcome Jannis! Glad you found us. This group is a wonderful support

system. Here's my famous links I like to provide to those who are new

to the board - and since you just received a dx should be useful to

you:

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

Live Chat Event with Dr. Gomperts, MD

Dr. Gomperts answered your questions on this Q & A session with Dr.

Gomperts, MD

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 & 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)

>

> Gladys ~

>

> We never had a clear diagnosis of what was wrong with my mother

until this last week, and then found it was LBD. She had previously

been diagnosed with Parkinson's and depression. However, there was

no improvement of the tremors with Levodopa or any of the other

dopamine meds, and we finally found a neurologist who knew what he

was doing.

>

> Up until this point, we had been taking care of my mom in home.

The new diagnosis doesn't change our commitment to keep her in her

home, in her own bed, and beside her husband of 61 years. I could

not, under any circumstances, put my mother or my father in a nursing

home or other facility. I have seen too much. My mother is

incontinent...we change her. She drools...we wipe her mouth. As she

sometimes mentally swims to the surface, we act as if she's there all

the time in our conversations with her.

>

> I spent the night Saturday night with my parents, sleeping in a

recliner beside Mom's bed. Just before she dropped off to sleep, she

had about a one-minute period of lucidity...telling me that my

daughter and son-in-law and granddaughter were " such a sweet little

family " and that my other daughter was " so pretty " . They had all

been there that afternoon and evening. I was so grateful for that

one-minute conversation...so blessed...and I had to stuff the blanket

into my mouth between answers to her so that she wouldn't hear me

crying.

>

> I count each second with my mother as precious, even the ones

where she's seeing demons clawing at her, even the ones where she

pushes me away as I'm trying to help her get to the bathroom, even

the ones when she tells me to get out and leave her alone. Believe

me...we teach our children how to love their parents.

>

> Jannis