Re: Jan - Welcome New Members

[Guest guest]

Hi Jan- I see you mentioned the Caregivers Gatherings. Actually I organized

both Caregiver Gatherings. First one was in August 2003 in LaCrosse, WI. Next

was also in the month of August 2008 in Ann Arbor, MI. I had met other

caregivers from here in Iowa, and one in Minnesota, and I wanted others to have

the opportunity to meet with others who really knew what we were going through

or had gone through. There are photo's from both gatherings in the

LBDcaregivers website. So nice seeing you posting Jan. Big hugs- S -

SandieDes 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' & 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]

Hey S! Good to see you here too. And I see Courage here once in awhile

too. So good to see you both here. You  both have really been hangin' around

here for many moons. OOPS! I didn't know that you organized the Michigan one

too. Maybe I did and forgot.

You are an expert in getting it all organized now. Sometime, if there ever is

another one I will attend. I am going to Kentucky in April, so it can't be then.

LOL My cousin's son is getting married in Kentucky. I'm venturing out now. I

wonder if they have " Lemon Drops " there? Hahahaha I remember you looking

everywhere for the mix to that for the last Michigan get together and your

cousin knew where to find it. So far, the average has been 5 years before the

next Caregiver's Gathering, so next year we are due for another. I wonder who

would come to Northern California? I'll think about doing it...........Maybe. No

promises here.

 

________________________________

To: LBDcaregivers

Sent: Sunday, January 15, 2012 7:24 PM

Subject: Re: Jan - Welcome New Members

 

Hi Jan- I see you mentioned the Caregivers Gatherings.  Actually I organized

both Caregiver Gatherings.  First one was in August 2003 in LaCrosse, WI.  Next

was also in the month of August 2008 in Ann Arbor, MI.  I had met other

caregivers from here in Iowa, and one in Minnesota, and I wanted others to have

the opportunity to meet with others who really knew what we were going through

or had gone through.    There are photo's from both gatherings in the

LBDcaregivers website.  So nice seeing you posting Jan.    Big hugs-  S -

SandieDes 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' & 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]

Hello again, Jan- I have seen some posts from Courage, too. It's nice seeing

us " old timers " and to meet the new comers as well. I originally joined the

group January 2002, dad passed away Sept. of that year. I signed out of the

group August 2003 and rejoined again April 2004. Been here since then. Often I

just lurk but sometimes I am pulled out of the shadows and post. We have 2

graduations, my son and a nephew, so I won't be organizing a gathering this

year. I would be happy to let someone else take it over, whenever, and we will

just show up. It seems there are several people in the midwest with LBD, and

travel was more or less midway for everyone which is why it ended up in

Wisconsin and Michigan. I would be open to other places though. I remember

the Ann Arbor, MI gathering we toasted Lemon Drops. There are photo's in the

photo's section of the LBDCaregivers website of the toast and of the whole

gathering. Yes my cousin knew where to get the Lemon Drops mix and I have since

seen it other places, too. I believe 3 different people took and posted

photo's. I also remember Carol dialed you, you were on speaker phone and we all

were able to hear you and Jim. What a blessing. I'm so glad you are venturing

out. You so deserve time away! Take care, sending hugs- SandieDes 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 & #65533;

> >

> > 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 & #65533;

> >

> > 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 & #65533;

> >

> > 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. & #65533;

> >

> >