Re: Judy - Welcome New Members

[Guest guest]

Oh Judy. I am so sorry you are so down. What I found is the mourning process

was so confusing while my dad was alive. I mourned his changes, he wasn't the

man I grew up with. Each decline seemed like a loss, I mourned each and every

one of them yet could still look him in the eyes. It wasn't " mourning " as I was

accustomed to. Then when he passed away I mourned that loss. My head knew

dad had won his battle with LBD but my heart was broken. Again, I went through

the mourning process yet this time I wasn't able to look him in the eyes. It

was an end to the end. You will make it through this. Please find strength

in those whom have traveled this journey before you. Sending many hugs to you

and prayers up for you- Sandie

Des 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.

>

>

[Guest guest]

Hi Judy- I have found that even though LBD is an individual disease there are

mirrored images that we have found within us caregivers. I think that's what

makes the bond so special. In speaking with other caregivers I have named

symptoms and struggles only to hear back a " yes, that's it, exactly " and so on.

Yes, my dad did recognize me up until the end. He had changed rapidly, too. He

was so very thin, his hands began to contort, and he looked aged. But he still

had his big blue eyes. I remember the day before he passed away the NH staff

had him sitting in a recliner, feet up and he was covered up. I sat on the

floor next to him. He kept looking right at me and would sort of grunt. His

eye brows moved. The first couple times I joked with him then it became a bit

serious. I remarked that it seemed he was trying to tell me something. Before

I left I told him I loved him, the next day he passed away. My dad was

diagnosed with LBD around 58 years old and passed away at age 65, the 7 year

mark. I remember being at our Iowa State Fair with a friend and commented a few

times that I heard people being paged over the loud speaker and wondered if

anyone was really able to hear their name. I got home to find I had been paged

at the fair, my dad was taken by ambulance to a hospital, he had had a mild

heart attack. It was then my brother and I called in a neurologist. The

diagnosing process was started, or should I say the process of elimination

began. Your story sounds so much like my mother and father-in-law's story.

So very similar. My MIL was 78 when she passed end of April 2007. Her LBD

journey was about 5 years, in New Zealand. I had the honor of meeting her on

one of my visits, such a sweet, sweet dear person. It seems so often there has

been some type of trauma, surgery, hospital stay, that either brings out LBD,

speeds it up, makes it noticeable, what ever the wording. Not uncommon for

sure. You may write me personally at any time. Any question or venting is

fine. Many Iowa hugs- Sandiesanclown@... Moines, IA

----- 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' & #65533; " all

these

> > > > links are useful to the caregiver. A variety of categories neatly

> > > > organized into folders & #65533; " 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.

> > > >

> > > >