Support Groups

[Guest guest]

This is said somewhat 'tongue-in-cheek'...but all you have to do is talk about a

new way to lose weight and be at peace with food--and people will flock to a

meeting!!! They'll just assume it is another diet!!

Cheryl

[Guest guest]

Hi Judy,

I didn't forget about your e-mail. I did contact our local group leader

and as of yet have not heard back from her. I did see an e-mail posted

about Norma from the New York metro area. Is she close to you? I have

family on Long Island so that is the area I'm most familiar with. -

(terrible drive and traffic :-)). I saw that Norma just won a

prestigious award as well. She might be your best bet if she's close

enough to you. Good luck!

Hoping your mom is as good as can be expected.

Love, Marcie

_____

From: LBDcaregivers [mailto:LBDcaregivers ]

On Behalf Of Judy Strauss

Sent: Monday, January 16, 2012 8:41 PM

To: LBDcaregivers

Subject: Re: Support Groups

Hi Marcie,

I don't know how I missed this post from you earlier today.....

I would be very grateful to be in touch with your group leader and Pa. Is

close enough to NYC that I could even venture to you and spend some time

with the leader and sit in on a group or two.

You bring up a good point that in a perfect support group people in the same

group would be caring for loved ones in the same stages of the disease-

Another place I will research to develop a group will be at Columbia

Presbyterian hospital close to where my mom lives at the movements disorders

department which focuses on all parkinsoninian Like diseases including PDD

and LBD - I'm taking my mom to see the neurologist who gave her the dx in

2010 in February.

I would think there and at NYU medical where there are mds working with LBD

would be a good Referal base to invite family caregivers to join a support

group.

Thanks for your help Marcie,

Judy

Judy R Strauss, LMSW, PhD

Area Chair | College of Social Sciences

University of Phoenix

Jersey City Campus | 100 Town Square Place | Suite 305

Jersey City, NJ 07310

Cell:

Email: Jrstr@... <mailto:Jrstr%40email.phoenix.edu>

On Jan 16, 2012, at 8:12 PM, Vivian DeWalt <vivdewalt11@...

<mailto:vivdewalt11%40gmail.com> > wrote:

> HI Marcie: I am glad that you had a local support group. There is no LBD

> groups in my area. This on-line forum is very helpful to me.

>

> Vivian (49) (spouse of husband dx with PD, then LBD in 2010)

>

> On Mon, Jan 16, 2012 at 11:35 AM, Marcia Bosack <mbosack@...

<mailto:mbosack%40verizon.net> > wrote:

>

>> **

>>

>>

>> Hi Judy,

>>

>> Re the local group. I live in Bucks County, Pa and we have a wonderful

>> local group. I will e-mail her and see if I can have her get in touch

with

>> you. In the beginning when mom was diagnosed with LBD I found both the

>> local group and this online group at once.

>>

>> Our group leader is wonderful- always full of information and seems to

know

>> exactly where to turn for every question asked. She knows so much about

>> LBD and all the right doctors, etc. She was a caregiver of a sweet woman

>> with LBD who I think had no one to care for her except her caregiver and

it

>> is in her honor and memory that our leader started this group.

>>

>> One down side of the group is that the members are all in different

stages

>> of LBD. Many members bring their spouses, some who are quite young

>> actually. We all take a turn going around the table sharing our

>> experiences. But from day one I did not share much because I did not want

>> to upset those members present who weren't as far along in the disease as

>> my

>> mom is. Some get up and leave when certain subjects are mentioned,

>> because it makes them too uncomfortable. I would do the same if I were

>> them.

>>

>> Others have mentioned having two tables in two separate rooms for those

in

>> the beginning stages and those in the later stages. But then you would

>> need two group discussion leaders.

>>

>> Just thought this information might be helpful. And yes it would be fun

to

>> actually meet someday - great idea!

>>

>> Marcie

>>

>> _____

>>

>> From: LBDcaregivers

<mailto:LBDcaregivers%40yahoogroups.com>

[mailto:LBDcaregivers

<mailto:LBDcaregivers%40yahoogroups.com> ]

>> On Behalf Of Judy Strauss

>> Sent: Sunday, January 15, 2012 10:23 PM

>> To: LBDcaregivers

<mailto:LBDcaregivers%40yahoogroups.com>

>> Subject: Re: Welcome New Members

>>

>> Hi Jan,

>>

>> You are lucky you have has the occasion to have friends close by to

>> socialize with who are part of the group. I would imagine that as you say

>> that it is meaningful to match faces with names who have been so much a

>> part

>> of your journey through lewy land with a loved one.

>>

>> I'm actually amazed there are not more people for The NYC area who are

part

>> of this forum - If there are other members from the NY, NJ and the

tristate

>> area here I would love to know who you are- the only one I have I know

this

>> far is helene .....

>>

>> Thanks,

>>

>> Judy

>>

>> Judy R Strauss, LMSW, PhD

>> Area Chair | College of Social Sciences

>>

>> University of Phoenix

>> Jersey City Campus | 100 Town Square Place | Suite 305

>> Jersey City, NJ 07310

>> Cell:

>> Email: Jrstr@... <mailto:Jrstr%40email.phoenix.edu>

<mailto:Jrstr%40email.phoenix.edu>

>>

>> On Jan 15, 2012, at 10:11 PM, Janet Colello <janetcolello@...

<mailto:janetcolello%40yahoo.com>

>> <mailto:janetcolello%40yahoo.com> > wrote:

>>

>>> Hi Judy,

>>> I am not talking about a support group, but just people from this site

>> online that live in my area. We meet occasionally for coffee or lunch.

>>> It's nice to get together with them and to have met them. I have met

>> several people from this online site in my area over the years, some

still

>> involved with their LOs and some, as I am, have lost their LO. If there

are

>> any that are not far from you from this online site, it is fun to get

>> together and meet them.

>>>

>>> ________________________________

>>> From: Judy Strauss <jrstraussb@... <mailto:jrstraussb%40aol.com>

<mailto:jrstraussb%40aol.com> >

>>> To: " LBDcaregivers

<mailto:LBDcaregivers%40yahoogroups.com>

>> <mailto:LBDcaregivers%40yahoogroups.com> " <LBDcaregivers

<mailto:LBDcaregivers%40yahoogroups.com>

>> <mailto:LBDcaregivers%40yahoogroups.com> >

>>> Sent: Sunday, January 15, 2012 7:04 PM

>>> Subject: Re: Welcome New Members

>>>

>>> Hi Jan,

>>>

>>> Funny you talk about a support group and seeing people face to face -The

>> only group I am aware of through this forum in NYC is in long island - a

>> far

>> way off from where I live to attend on a regular basis -

>>>

>>> With my professional training and now first Hans experience with LBD as

a

>> caregiver I am interested in starting a group in the NYC area - if anyone

>> has any ideas of how to get this off the ground please let me know !

>>>

>>> Judy

>>>

>>> Judy R Strauss, LMSW, PhD

>>> Area Chair | College of Social Sciences

>>>

>>> University of Phoenix

>>> Jersey City Campus | 100 Town Square Place | Suite 305

>>> Jersey City, NJ 07310

>>> Cell:

>>> Email: Jrstr@... <mailto:Jrstr%40email.phoenix.edu>

<mailto:Jrstr%40email.phoenix.edu>

>>>

>>> On Jan 15, 2012, at 9:47 PM, Janet Colello <janetcolello@...

<mailto:janetcolello%40yahoo.com>

>> <mailto:janetcolello%40yahoo.com> > wrote:

>>>

>>>> Thank you Judy for your kind words. I am kind of in contact with Jim's

>> kids. Although, we were all close at one time, when Jim became ill they

>> disappeared and showed up occasionally. They seemed more interested in

how

>> much they could make off of the house and were talking about it even

while

>> Jim was in the process of dying. I told them to be quiet, because hearing

>> is

>> one of the last senses to go and I am sure Jim could hear them. They made

>> me

>> angry when they put the house up for sale so soon after Jim died. I never

>> gave them my new address, they can e-mail me or text message me, but I

>> don't

>> want them to come visiting. I heard from them over the holidays on e-mail

>> and that was good enough.

>>>>

>>>> " I was thinking when this is over for a way to visit all of you -

>> wouldn't it be moving to see the faces that match your names on the

>> emails....sharing this with all of you is a savior to my bruised

soul..... "

>>>>

>>>> Judy, I have met some of the group people. There are several in my area

>> where I live and we meet for coffee or lunch once in awhile.

>>>> Do you have any in your area to meet with? I also met some at the

>> Washington DC Conference for LBD several years ago. It was wonderful

>> meeting

>> the faces of the people that seem like family here. Every once in awhile

>> they do have group meetings or reunions in different states. They had one

>> in

>> Michigan a few years ago, and Sandie started the first one ever with this

>> group in the early 2000s or maybe even late 90s, I wasn't even in this

>> group

>> yet. If you hear of one that isn't too far for you to travel they are fun

>> to

>> go to and meet people from the group site. Every now and then someone

will

>> decide to set it up in a state where they live or a state near them. I

>> didn't attend the one in Michigan, but they sent photos of it, and I

talked

>> to all the gang on the phone. I wish I could have attended, but I had Jim

>> to

>> care for, it looked like fun. You can see the photos in the LBD album of

>> the

>> group get-togethers. Anyone that wants to set up a group

>>>> get-together can do it, but it's a lot of work. They need to get group

>> rates at a hotel and set everything up for the gathering, maybe some

tours,

>> and make sure everyone gets the information, so there is a turn out of

>> people. If anyone is interested in doing something like that they are

>> welcome to it. There is no committee that does this on an annual basis,

>> it's

>> done by whoever wants to do it. The ones that have gone before and done

it,

>> can help with info. on how to get it started I am sure.

>>>>

>>>>

>>>>

>>>> ________________________________

>>>> From: Judy Strauss <jrstraussb@... <mailto:jrstraussb%40aol.com>

<mailto:jrstraussb%40aol.com> >

>>>> To: " LBDcaregivers

<mailto:LBDcaregivers%40yahoogroups.com>

>> <mailto:LBDcaregivers%40yahoogroups.com> " <LBDcaregivers

<mailto:LBDcaregivers%40yahoogroups.com>

>> <mailto:LBDcaregivers%40yahoogroups.com> >

>>>> Sent: Saturday, January 14, 2012 11:25 AM

>>>> Subject: Re: Welcome New Members

>>>>

>>>> Hi Jan,

>>>>

>>>> It must have been such a shock to your system for Jim's kids to have

>> sold the house within months of his passing...,I vaguely remember your

>> writing about this last year here in the forum....do u have anything to

do

>> with the kids anymore ? I would think it may be a comfort to be in touch

>> with someone who shares Jim's DNA....only that is of they are kind to

you.

>>>>

>>>> I guess there is no use to sit and wonder why this is all

>> happening...and although i am not there yet I have no doubt in the truth

>> about not having your Loved one's presence anymore is mixed with the

>> emotion

>> that they are not suffering but you still miss them rings true for me....

>>>>

>>>> I was thinking when this is over for a way to visit all of you -

>> wouldn't it be moving to see the faces that match your names on the

>> emails....sharing this with all of you is a savior to my bruised

soul.....

>>>>

>>>> Jan, keep healing and thank you for staying here on the board to help

>> us

>> who are waking the road right behind you ....it's a noble deed and I hope

>> you get some solace in knowing that you are a great support....

>>>>

>>>> Xoxox

>>>>

>>>> Judy

>>>>

>>>> Judy R Strauss, LMSW, PhD

>>>> Area Chair | College of Social Sciences

>>>>

>>>> University of Phoenix

>>>> Jersey City Campus | 100 Town Square Place | Suite 305

>>>> Jersey City, NJ 07310

>>>> Cell:

>>>> Email: Jrstr@... <mailto:Jrstr%40email.phoenix.edu>

<mailto:Jrstr%40email.phoenix.edu>

>>>>

>>>> On Jan 14, 2012, at 1:46 PM, Janet Colello <janetcolello@...

<mailto:janetcolello%40yahoo.com>

>> <mailto:janetcolello%40yahoo.com> > wrote:

>>>>

>>>>> Hi Judy,

>>>>> It was odd not to see any posts here for a few days. I have been on

>> this site since 2003 and there are lulls, but there has never been a lull

>> where there is not one person here that I have seen. I'm so sorry to hear

>> about your emotional happenings. I too am experiencing a lot of tearful

>> moments that just seem to pop up out of nowhere. This coming week is the

>> year anniversary of Jim's passing. My birthday is on the 21st and Jim

>> passed

>> in the early morning of the 22nd. I prayed he would not pass on my

>> birthday.

>> Hospice said that was the day that they had determined he would go. In

>> Jim's

>> weak shape I know he did not know it was my birthday, but he managed to

>> hold

>> on one day and left me on the 22nd. I was numb the day he died, and

things

>> moved so fast after his death, since he left the house in a Trust to his

>> kids. He lived in that house before we were married. His kids put the

house

>> up for sale 2 months after he passed, and I had to pack and move out

>>>>> since the house sold fast. I had no time to go through Jim's things.

>> I

>> had to scale way down, since I moved to a much smaller place. I gave them

>> all to a church and they brought his equipment; wheelchair etc...... and

>> things all over the world and blessed the world with them. It lifted my

>> heart to hear that Jim still did so much for others when he was gone.

>>>>> Things moved so fast then there was barely time to grieve and I am

>> really feeling it this year without him.

>>>>> No matter how you cut it, Lewy is a horrible disease, their being is

>> there with you when they are living, but they are not the same person

>>>>> you knew and grieving starts then, but their presence means so much.

>> When they are gone you rejoice that they no longer suffer, but you miss

>> their presence.

>>>>> I hope you find some solace in this day that you are not alone.

>>>>> Jan Colello

>>>>> Husband, Jim, dx w/LBD 2003

>>>>> Deceased, January 2011

>>>>>

>>>>> ________________________________

>>>>> From: Judy Strauss <jrstraussb@... <mailto:jrstraussb%40aol.com>

<mailto:jrstraussb%40aol.com>

>>>

>>>>> To: " LBDcaregivers

<mailto:LBDcaregivers%40yahoogroups.com>

>> <mailto:LBDcaregivers%40yahoogroups.com> " <LBDcaregivers

<mailto:LBDcaregivers%40yahoogroups.com>

>> <mailto:LBDcaregivers%40yahoogroups.com> >

>>>>> Sent: Friday, January 13, 2012 6:05 PM

>>>>> Subject: Re: Welcome New Members

>>>>>

>>>>> Hi Jan,

>>>>>

>>>>> OMG - I was thinking the same thing Jan. I have been so down this

>> last

>> week- feeling scared and alone with my sadness about my mom. I drove to

the

>> university last night for a workshop:training and cried the whole way

down.

>> It takes me app 1 hour to get there.

>>>>>

>>>>> I suppose it's the beginning of a new year that is bringing me down

>> as

>> of late. I cling to my husband who is quite a bit older than me....all

the

>> while scared of losing him too.....

>>>>>

>>>>> My mom has been unable to speak, walk, been incontinent and not

>> recognizing me for almost a year now... Do others here feel that after

>> going

>> through all these losses while their loved one is alive over the years

they

>> decline prepare them for their eventual demise ??

>>>>>

>>>>> Not seeing posts for several days made me recognize once more how

>> important you all are to me and my wellbeing.

>>>>>

>>>>> Thank you,

>>>>>

>>>>> Judy

>>>>>

>>>>> Judy R Strauss, LMSW, PhD

>>>>> Area Chair | College of Social Sciences

>>>>>

>>>>> University of Phoenix

>>>>> Jersey City Campus | 100 Town Square Place | Suite 305

>>>>> Jersey City, NJ 07310

>>>>> Cell:

>>>>> Email: Jrstr@... <mailto:Jrstr%40email.phoenix.edu>

<mailto:Jrstr%40email.phoenix.edu>

>>>>>

>>>>> On Jan 13, 2012, at 8:39 PM, Janet Colello <janetcolello@...

<mailto:janetcolello%40yahoo.com>

>> <mailto:janetcolello%40yahoo.com> > wrote:

>>>>>

>>>>>>

>>>>>>

>>>>>> Where is everyone? For two days I have not one LBD Post. Am I not

>> getting them or is it a down time?

>>>>>> Jan Colello

>>>>>>

>>>>>> ________________________________

>>>>>> From: <octoryrose@... <mailto:octoryrose%40yahoo.com>

<mailto:

>> octoryrose%40yahoo.com>

>>>

>>>>>> To: LBDcaregivers

<mailto:LBDcaregivers%40yahoogroups.com>

>> <mailto:LBDcaregivers%40yahoogroups.com>

>>>>>> Sent: Thursday, January 12, 2012 3:17 AM

>>>>>> Subject: 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

>> <http://www.lbda.org/index.cfm?fuseaction=product.print

<http://www.lbda.org/index.cfm?fuseaction=product.print & product_id=10255>

& product_id=10255>

>> & 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=newss

>> earch

>>>>>>

>>>>>> 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

>> <http://interactive.snm.org/index.cfm?PageID=7405

<http://interactive.snm.org/index.cfm?PageID=7405 & RPID=627> & RPID=627>

& 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.

>>>>>>

>>>>>> ------------------------------------

>>>>>>

>>>>>> Welcome to LBDcaregivers.

>>>>>>

>>>>>>

[Guest guest]

Hi Judy,

I didn't forget about your e-mail. I did contact our local group leader

and as of yet have not heard back from her. I did see an e-mail posted

about Norma from the New York metro area. Is she close to you? I have

family on Long Island so that is the area I'm most familiar with. -

(terrible drive and traffic :-)). I saw that Norma just won a

prestigious award as well. She might be your best bet if she's close

enough to you. Good luck!

Hoping your mom is as good as can be expected.

Love, Marcie

_____

From: LBDcaregivers [mailto:LBDcaregivers ]

On Behalf Of Judy Strauss

Sent: Monday, January 16, 2012 8:41 PM

To: LBDcaregivers

Subject: Re: Support Groups

Hi Marcie,

I don't know how I missed this post from you earlier today.....

I would be very grateful to be in touch with your group leader and Pa. Is

close enough to NYC that I could even venture to you and spend some time

with the leader and sit in on a group or two.

You bring up a good point that in a perfect support group people in the same

group would be caring for loved ones in the same stages of the disease-

Another place I will research to develop a group will be at Columbia

Presbyterian hospital close to where my mom lives at the movements disorders

department which focuses on all parkinsoninian Like diseases including PDD

and LBD - I'm taking my mom to see the neurologist who gave her the dx in

2010 in February.

I would think there and at NYU medical where there are mds working with LBD

would be a good Referal base to invite family caregivers to join a support

group.

Thanks for your help Marcie,

Judy

Judy R Strauss, LMSW, PhD

Area Chair | College of Social Sciences

University of Phoenix

Jersey City Campus | 100 Town Square Place | Suite 305

Jersey City, NJ 07310

Cell:

Email: Jrstr@... <mailto:Jrstr%40email.phoenix.edu>

On Jan 16, 2012, at 8:12 PM, Vivian DeWalt <vivdewalt11@...

<mailto:vivdewalt11%40gmail.com> > wrote:

> HI Marcie: I am glad that you had a local support group. There is no LBD

> groups in my area. This on-line forum is very helpful to me.

>

> Vivian (49) (spouse of husband dx with PD, then LBD in 2010)

>

> On Mon, Jan 16, 2012 at 11:35 AM, Marcia Bosack <mbosack@...

<mailto:mbosack%40verizon.net> > wrote:

>

>> **

>>

>>

>> Hi Judy,

>>

>> Re the local group. I live in Bucks County, Pa and we have a wonderful

>> local group. I will e-mail her and see if I can have her get in touch

with

>> you. In the beginning when mom was diagnosed with LBD I found both the

>> local group and this online group at once.

>>

>> Our group leader is wonderful- always full of information and seems to

know

>> exactly where to turn for every question asked. She knows so much about

>> LBD and all the right doctors, etc. She was a caregiver of a sweet woman

>> with LBD who I think had no one to care for her except her caregiver and

it

>> is in her honor and memory that our leader started this group.

>>

>> One down side of the group is that the members are all in different

stages

>> of LBD. Many members bring their spouses, some who are quite young

>> actually. We all take a turn going around the table sharing our

>> experiences. But from day one I did not share much because I did not want

>> to upset those members present who weren't as far along in the disease as

>> my

>> mom is. Some get up and leave when certain subjects are mentioned,

>> because it makes them too uncomfortable. I would do the same if I were

>> them.

>>

>> Others have mentioned having two tables in two separate rooms for those

in

>> the beginning stages and those in the later stages. But then you would

>> need two group discussion leaders.

>>

>> Just thought this information might be helpful. And yes it would be fun

to

>> actually meet someday - great idea!

>>

>> Marcie

>>

>> _____

>>

>> From: LBDcaregivers

<mailto:LBDcaregivers%40yahoogroups.com>

[mailto:LBDcaregivers

<mailto:LBDcaregivers%40yahoogroups.com> ]

>> On Behalf Of Judy Strauss

>> Sent: Sunday, January 15, 2012 10:23 PM

>> To: LBDcaregivers

<mailto:LBDcaregivers%40yahoogroups.com>

>> Subject: Re: Welcome New Members

>>

>> Hi Jan,

>>

>> You are lucky you have has the occasion to have friends close by to

>> socialize with who are part of the group. I would imagine that as you say

>> that it is meaningful to match faces with names who have been so much a

>> part

>> of your journey through lewy land with a loved one.

>>

>> I'm actually amazed there are not more people for The NYC area who are

part

>> of this forum - If there are other members from the NY, NJ and the

tristate

>> area here I would love to know who you are- the only one I have I know

this

>> far is helene .....

>>

>> Thanks,

>>

>> Judy

>>

>> Judy R Strauss, LMSW, PhD

>> Area Chair | College of Social Sciences

>>

>> University of Phoenix

>> Jersey City Campus | 100 Town Square Place | Suite 305

>> Jersey City, NJ 07310

>> Cell:

>> Email: Jrstr@... <mailto:Jrstr%40email.phoenix.edu>

<mailto:Jrstr%40email.phoenix.edu>

>>

>> On Jan 15, 2012, at 10:11 PM, Janet Colello <janetcolello@...

<mailto:janetcolello%40yahoo.com>

>> <mailto:janetcolello%40yahoo.com> > wrote:

>>

>>> Hi Judy,

>>> I am not talking about a support group, but just people from this site

>> online that live in my area. We meet occasionally for coffee or lunch.

>>> It's nice to get together with them and to have met them. I have met

>> several people from this online site in my area over the years, some

still

>> involved with their LOs and some, as I am, have lost their LO. If there

are

>> any that are not far from you from this online site, it is fun to get

>> together and meet them.

>>>

>>> ________________________________

>>> From: Judy Strauss <jrstraussb@... <mailto:jrstraussb%40aol.com>

<mailto:jrstraussb%40aol.com> >

>>> To: " LBDcaregivers

<mailto:LBDcaregivers%40yahoogroups.com>

>> <mailto:LBDcaregivers%40yahoogroups.com> " <LBDcaregivers

<mailto:LBDcaregivers%40yahoogroups.com>

>> <mailto:LBDcaregivers%40yahoogroups.com> >

>>> Sent: Sunday, January 15, 2012 7:04 PM

>>> Subject: Re: Welcome New Members

>>>

>>> Hi Jan,

>>>

>>> Funny you talk about a support group and seeing people face to face -The

>> only group I am aware of through this forum in NYC is in long island - a

>> far

>> way off from where I live to attend on a regular basis -

>>>

>>> With my professional training and now first Hans experience with LBD as

a

>> caregiver I am interested in starting a group in the NYC area - if anyone

>> has any ideas of how to get this off the ground please let me know !

>>>

>>> Judy

>>>

>>> Judy R Strauss, LMSW, PhD

>>> Area Chair | College of Social Sciences

>>>

>>> University of Phoenix

>>> Jersey City Campus | 100 Town Square Place | Suite 305

>>> Jersey City, NJ 07310

>>> Cell:

>>> Email: Jrstr@... <mailto:Jrstr%40email.phoenix.edu>

<mailto:Jrstr%40email.phoenix.edu>

>>>

>>> On Jan 15, 2012, at 9:47 PM, Janet Colello <janetcolello@...

<mailto:janetcolello%40yahoo.com>

>> <mailto:janetcolello%40yahoo.com> > wrote:

>>>

>>>> Thank you Judy for your kind words. I am kind of in contact with Jim's

>> kids. Although, we were all close at one time, when Jim became ill they

>> disappeared and showed up occasionally. They seemed more interested in

how

>> much they could make off of the house and were talking about it even

while

>> Jim was in the process of dying. I told them to be quiet, because hearing

>> is

>> one of the last senses to go and I am sure Jim could hear them. They made

>> me

>> angry when they put the house up for sale so soon after Jim died. I never

>> gave them my new address, they can e-mail me or text message me, but I

>> don't

>> want them to come visiting. I heard from them over the holidays on e-mail

>> and that was good enough.

>>>>

>>>> " I was thinking when this is over for a way to visit all of you -

>> wouldn't it be moving to see the faces that match your names on the

>> emails....sharing this with all of you is a savior to my bruised

soul..... "

>>>>

>>>> Judy, I have met some of the group people. There are several in my area

>> where I live and we meet for coffee or lunch once in awhile.

>>>> Do you have any in your area to meet with? I also met some at the

>> Washington DC Conference for LBD several years ago. It was wonderful

>> meeting

>> the faces of the people that seem like family here. Every once in awhile

>> they do have group meetings or reunions in different states. They had one

>> in

>> Michigan a few years ago, and Sandie started the first one ever with this

>> group in the early 2000s or maybe even late 90s, I wasn't even in this

>> group

>> yet. If you hear of one that isn't too far for you to travel they are fun

>> to

>> go to and meet people from the group site. Every now and then someone

will

>> decide to set it up in a state where they live or a state near them. I

>> didn't attend the one in Michigan, but they sent photos of it, and I

talked

>> to all the gang on the phone. I wish I could have attended, but I had Jim

>> to

>> care for, it looked like fun. You can see the photos in the LBD album of

>> the

>> group get-togethers. Anyone that wants to set up a group

>>>> get-together can do it, but it's a lot of work. They need to get group

>> rates at a hotel and set everything up for the gathering, maybe some

tours,

>> and make sure everyone gets the information, so there is a turn out of

>> people. If anyone is interested in doing something like that they are

>> welcome to it. There is no committee that does this on an annual basis,

>> it's

>> done by whoever wants to do it. The ones that have gone before and done

it,

>> can help with info. on how to get it started I am sure.

>>>>

>>>>

>>>>

>>>> ________________________________

>>>> From: Judy Strauss <jrstraussb@... <mailto:jrstraussb%40aol.com>

<mailto:jrstraussb%40aol.com> >

>>>> To: " LBDcaregivers

<mailto:LBDcaregivers%40yahoogroups.com>

>> <mailto:LBDcaregivers%40yahoogroups.com> " <LBDcaregivers

<mailto:LBDcaregivers%40yahoogroups.com>

>> <mailto:LBDcaregivers%40yahoogroups.com> >

>>>> Sent: Saturday, January 14, 2012 11:25 AM

>>>> Subject: Re: Welcome New Members

>>>>

>>>> Hi Jan,

>>>>

>>>> It must have been such a shock to your system for Jim's kids to have

>> sold the house within months of his passing...,I vaguely remember your

>> writing about this last year here in the forum....do u have anything to

do

>> with the kids anymore ? I would think it may be a comfort to be in touch

>> with someone who shares Jim's DNA....only that is of they are kind to

you.

>>>>

>>>> I guess there is no use to sit and wonder why this is all

>> happening...and although i am not there yet I have no doubt in the truth

>> about not having your Loved one's presence anymore is mixed with the

>> emotion

>> that they are not suffering but you still miss them rings true for me....

>>>>

>>>> I was thinking when this is over for a way to visit all of you -

>> wouldn't it be moving to see the faces that match your names on the

>> emails....sharing this with all of you is a savior to my bruised

soul.....

>>>>

>>>> Jan, keep healing and thank you for staying here on the board to help

>> us

>> who are waking the road right behind you ....it's a noble deed and I hope

>> you get some solace in knowing that you are a great support....

>>>>

>>>> Xoxox

>>>>

>>>> Judy

>>>>

>>>> Judy R Strauss, LMSW, PhD

>>>> Area Chair | College of Social Sciences

>>>>

>>>> University of Phoenix

>>>> Jersey City Campus | 100 Town Square Place | Suite 305

>>>> Jersey City, NJ 07310

>>>> Cell:

>>>> Email: Jrstr@... <mailto:Jrstr%40email.phoenix.edu>

<mailto:Jrstr%40email.phoenix.edu>

>>>>

>>>> On Jan 14, 2012, at 1:46 PM, Janet Colello <janetcolello@...

<mailto:janetcolello%40yahoo.com>

>> <mailto:janetcolello%40yahoo.com> > wrote:

>>>>

>>>>> Hi Judy,

>>>>> It was odd not to see any posts here for a few days. I have been on

>> this site since 2003 and there are lulls, but there has never been a lull

>> where there is not one person here that I have seen. I'm so sorry to hear

>> about your emotional happenings. I too am experiencing a lot of tearful

>> moments that just seem to pop up out of nowhere. This coming week is the

>> year anniversary of Jim's passing. My birthday is on the 21st and Jim

>> passed

>> in the early morning of the 22nd. I prayed he would not pass on my

>> birthday.

>> Hospice said that was the day that they had determined he would go. In

>> Jim's

>> weak shape I know he did not know it was my birthday, but he managed to

>> hold

>> on one day and left me on the 22nd. I was numb the day he died, and

things

>> moved so fast after his death, since he left the house in a Trust to his

>> kids. He lived in that house before we were married. His kids put the

house

>> up for sale 2 months after he passed, and I had to pack and move out

>>>>> since the house sold fast. I had no time to go through Jim's things.

>> I

>> had to scale way down, since I moved to a much smaller place. I gave them

>> all to a church and they brought his equipment; wheelchair etc...... and

>> things all over the world and blessed the world with them. It lifted my

>> heart to hear that Jim still did so much for others when he was gone.

>>>>> Things moved so fast then there was barely time to grieve and I am

>> really feeling it this year without him.

>>>>> No matter how you cut it, Lewy is a horrible disease, their being is

>> there with you when they are living, but they are not the same person

>>>>> you knew and grieving starts then, but their presence means so much.

>> When they are gone you rejoice that they no longer suffer, but you miss

>> their presence.

>>>>> I hope you find some solace in this day that you are not alone.

>>>>> Jan Colello

>>>>> Husband, Jim, dx w/LBD 2003

>>>>> Deceased, January 2011

>>>>>

>>>>> ________________________________

>>>>> From: Judy Strauss <jrstraussb@... <mailto:jrstraussb%40aol.com>

<mailto:jrstraussb%40aol.com>

>>>

>>>>> To: " LBDcaregivers

<mailto:LBDcaregivers%40yahoogroups.com>

>> <mailto:LBDcaregivers%40yahoogroups.com> " <LBDcaregivers

<mailto:LBDcaregivers%40yahoogroups.com>

>> <mailto:LBDcaregivers%40yahoogroups.com> >

>>>>> Sent: Friday, January 13, 2012 6:05 PM

>>>>> Subject: Re: Welcome New Members

>>>>>

>>>>> Hi Jan,

>>>>>

>>>>> OMG - I was thinking the same thing Jan. I have been so down this

>> last

>> week- feeling scared and alone with my sadness about my mom. I drove to

the

>> university last night for a workshop:training and cried the whole way

down.

>> It takes me app 1 hour to get there.

>>>>>

>>>>> I suppose it's the beginning of a new year that is bringing me down

>> as

>> of late. I cling to my husband who is quite a bit older than me....all

the

>> while scared of losing him too.....

>>>>>

>>>>> My mom has been unable to speak, walk, been incontinent and not

>> recognizing me for almost a year now... Do others here feel that after

>> going

>> through all these losses while their loved one is alive over the years

they

>> decline prepare them for their eventual demise ??

>>>>>

>>>>> Not seeing posts for several days made me recognize once more how

>> important you all are to me and my wellbeing.

>>>>>

>>>>> Thank you,

>>>>>

>>>>> Judy

>>>>>

>>>>> Judy R Strauss, LMSW, PhD

>>>>> Area Chair | College of Social Sciences

>>>>>

>>>>> University of Phoenix

>>>>> Jersey City Campus | 100 Town Square Place | Suite 305

>>>>> Jersey City, NJ 07310

>>>>> Cell:

>>>>> Email: Jrstr@... <mailto:Jrstr%40email.phoenix.edu>

<mailto:Jrstr%40email.phoenix.edu>

>>>>>

>>>>> On Jan 13, 2012, at 8:39 PM, Janet Colello <janetcolello@...

<mailto:janetcolello%40yahoo.com>

>> <mailto:janetcolello%40yahoo.com> > wrote:

>>>>>

>>>>>>

>>>>>>

>>>>>> Where is everyone? For two days I have not one LBD Post. Am I not

>> getting them or is it a down time?

>>>>>> Jan Colello

>>>>>>

>>>>>> ________________________________

>>>>>> From: <octoryrose@... <mailto:octoryrose%40yahoo.com>

<mailto:

>> octoryrose%40yahoo.com>

>>>

>>>>>> To: LBDcaregivers

<mailto:LBDcaregivers%40yahoogroups.com>

>> <mailto:LBDcaregivers%40yahoogroups.com>

>>>>>> Sent: Thursday, January 12, 2012 3:17 AM

>>>>>> Subject: 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

>> <http://www.lbda.org/index.cfm?fuseaction=product.print

<http://www.lbda.org/index.cfm?fuseaction=product.print & product_id=10255>

& product_id=10255>

>> & 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=newss

>> earch

>>>>>>

>>>>>> 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

>> <http://interactive.snm.org/index.cfm?PageID=7405

<http://interactive.snm.org/index.cfm?PageID=7405 & RPID=627> & RPID=627>

& 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.

>>>>>>

>>>>>> ------------------------------------

>>>>>>

>>>>>> Welcome to LBDcaregivers.

>>>>>>

>>>>>>

[Guest guest]

Dear Judy,

Here is Cammy Frazier's e-mail: camcat65@...

She said she would be glad to talk to you about starting a group. She's

a wonderful group leader and very knowledgeable!

Marcie

_____

From: LBDcaregivers [mailto:LBDcaregivers ]

On Behalf Of Judy Strauss

Sent: Friday, January 20, 2012 2:03 PM

To: LBDcaregivers

Subject: Re: Support Groups

Thanks Marcie !

Judy R Strauss, LMSW, PhD

Area Chair | College of Social Sciences

University of Phoenix

Jersey City Campus | 100 Town Square Place | Suite 305

Jersey City, NJ 07310

Cell:

Email: Jrstr@... <mailto:Jrstr%40email.phoenix.edu>

On Jan 20, 2012, at 11:03 AM, " Marcia Bosack " <mbosack@...

<mailto:mbosack%40verizon.net> > wrote:

> Hi Judy,

>

> I didn't forget about your e-mail. I did contact our local group leader

> and as of yet have not heard back from her. I did see an e-mail posted

> about Norma from the New York metro area. Is she close to you? I have

> family on Long Island so that is the area I'm most familiar with. -

> (terrible drive and traffic :-)). I saw that Norma just won a

> prestigious award as well. She might be your best bet if she's close

> enough to you. Good luck!

>

> Hoping your mom is as good as can be expected.

>

> Love, Marcie

>

> _____

>

> From: LBDcaregivers

<mailto:LBDcaregivers%40yahoogroups.com>

[mailto:LBDcaregivers

<mailto:LBDcaregivers%40yahoogroups.com> ]

> On Behalf Of Judy Strauss

> Sent: Monday, January 16, 2012 8:41 PM

> To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com>

> Subject: Re: Support Groups

>

> Hi Marcie,

>

> I don't know how I missed this post from you earlier today.....

>

> I would be very grateful to be in touch with your group leader and Pa. Is

> close enough to NYC that I could even venture to you and spend some time

> with the leader and sit in on a group or two.

>

> You bring up a good point that in a perfect support group people in the

same

> group would be caring for loved ones in the same stages of the disease-

>

> Another place I will research to develop a group will be at Columbia

> Presbyterian hospital close to where my mom lives at the movements

disorders

> department which focuses on all parkinsoninian Like diseases including PDD

> and LBD - I'm taking my mom to see the neurologist who gave her the dx in

> 2010 in February.

>

> I would think there and at NYU medical where there are mds working with

LBD

> would be a good Referal base to invite family caregivers to join a support

> group.

>

> Thanks for your help Marcie,

>

> Judy

>

> Judy R Strauss, LMSW, PhD

> Area Chair | College of Social Sciences

>

> University of Phoenix

> Jersey City Campus | 100 Town Square Place | Suite 305

> Jersey City, NJ 07310

> Cell:

> Email: Jrstr@... <mailto:Jrstr%40email.phoenix.edu>

<mailto:Jrstr%40email.phoenix.edu>

>

> On Jan 16, 2012, at 8:12 PM, Vivian DeWalt <vivdewalt11@...

<mailto:vivdewalt11%40gmail.com>

> <mailto:vivdewalt11%40gmail.com> > wrote:

>

> > HI Marcie: I am glad that you had a local support group. There is no LBD

> > groups in my area. This on-line forum is very helpful to me.

> >

> > Vivian (49) (spouse of husband dx with PD, then LBD in 2010)

> >

> > On Mon, Jan 16, 2012 at 11:35 AM, Marcia Bosack <mbosack@...

<mailto:mbosack%40verizon.net>

> <mailto:mbosack%40verizon.net> > wrote:

> >

> >> **

> >>

> >>

> >> Hi Judy,

> >>

> >> Re the local group. I live in Bucks County, Pa and we have a wonderful

> >> local group. I will e-mail her and see if I can have her get in touch

> with

> >> you. In the beginning when mom was diagnosed with LBD I found both the

> >> local group and this online group at once.

> >>

> >> Our group leader is wonderful- always full of information and seems to

> know

> >> exactly where to turn for every question asked. She knows so much about

> >> LBD and all the right doctors, etc. She was a caregiver of a sweet

woman

> >> with LBD who I think had no one to care for her except her caregiver

and

> it

> >> is in her honor and memory that our leader started this group.

> >>

> >> One down side of the group is that the members are all in different

> stages

> >> of LBD. Many members bring their spouses, some who are quite young

> >> actually. We all take a turn going around the table sharing our

> >> experiences. But from day one I did not share much because I did not

want

> >> to upset those members present who weren't as far along in the disease

as

> >> my

> >> mom is. Some get up and leave when certain subjects are mentioned,

> >> because it makes them too uncomfortable. I would do the same if I were

> >> them.

> >>

> >> Others have mentioned having two tables in two separate rooms for those

> in

> >> the beginning stages and those in the later stages. But then you would

> >> need two group discussion leaders.

> >>

> >> Just thought this information might be helpful. And yes it would be fun

> to

> >> actually meet someday - great idea!

> >>

> >> Marcie

> >>

> >> _____

> >>

> >> From: LBDcaregivers

<mailto:LBDcaregivers%40yahoogroups.com>

> <mailto:LBDcaregivers%40yahoogroups.com>

> [mailto:LBDcaregivers

<mailto:LBDcaregivers%40yahoogroups.com>

> <mailto:LBDcaregivers%40yahoogroups.com> ]

> >> On Behalf Of Judy Strauss

> >> Sent: Sunday, January 15, 2012 10:23 PM

> >> To: LBDcaregivers

<mailto:LBDcaregivers%40yahoogroups.com>

> <mailto:LBDcaregivers%40yahoogroups.com>

> >> Subject: Re: Welcome New Members

> >>

> >> Hi Jan,

> >>

> >> You are lucky you have has the occasion to have friends close by to

> >> socialize with who are part of the group. I would imagine that as you

say

> >> that it is meaningful to match faces with names who have been so much a

> >> part

> >> of your journey through lewy land with a loved one.

> >>

> >> I'm actually amazed there are not more people for The NYC area who are

> part

> >> of this forum - If there are other members from the NY, NJ and the

> tristate

> >> area here I would love to know who you are- the only one I have I know

> this

> >> far is helene .....

> >>

> >> Thanks,

> >>

> >> Judy

> >>

> >> Judy R Strauss, LMSW, PhD

> >> Area Chair | College of Social Sciences

> >>

> >> University of Phoenix

> >> Jersey City Campus | 100 Town Square Place | Suite 305

> >> Jersey City, NJ 07310

> >> Cell:

> >> Email: Jrstr@... <mailto:Jrstr%40email.phoenix.edu>

<mailto:Jrstr%40email.phoenix.edu>

> <mailto:Jrstr%40email.phoenix.edu>

> >>

> >> On Jan 15, 2012, at 10:11 PM, Janet Colello <janetcolello@...

<mailto:janetcolello%40yahoo.com>

> <mailto:janetcolello%40yahoo.com>

> >> <mailto:janetcolello%40yahoo.com> > wrote:

> >>

> >>> Hi Judy,

> >>> I am not talking about a support group, but just people from this site

> >> online that live in my area. We meet occasionally for coffee or lunch.

> >>> It's nice to get together with them and to have met them. I have met

> >> several people from this online site in my area over the years, some

> still

> >> involved with their LOs and some, as I am, have lost their LO. If there

> are

> >> any that are not far from you from this online site, it is fun to get

> >> together and meet them.

> >>>

> >>> ________________________________

> >>> From: Judy Strauss <jrstraussb@... <mailto:jrstraussb%40aol.com>

<mailto:jrstraussb%40aol.com>

> <mailto:jrstraussb%40aol.com> >

> >>> To: " LBDcaregivers

<mailto:LBDcaregivers%40yahoogroups.com>

> <mailto:LBDcaregivers%40yahoogroups.com>

> >> <mailto:LBDcaregivers%40yahoogroups.com> "

<LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com>

> <mailto:LBDcaregivers%40yahoogroups.com>

> >> <mailto:LBDcaregivers%40yahoogroups.com> >

> >>> Sent: Sunday, January 15, 2012 7:04 PM

> >>> Subject: Re: Welcome New Members

> >>>

> >>> Hi Jan,

> >>>

> >>> Funny you talk about a support group and seeing people face to face

-The

> >> only group I am aware of through this forum in NYC is in long island -

a

> >> far

> >> way off from where I live to attend on a regular basis -

> >>>

> >>> With my professional training and now first Hans experience with LBD

as

> a

> >> caregiver I am interested in starting a group in the NYC area - if

anyone

> >> has any ideas of how to get this off the ground please let me know !

> >>>

> >>> Judy

> >>>

> >>> Judy R Strauss, LMSW, PhD

> >>> Area Chair | College of Social Sciences

> >>>

> >>> University of Phoenix

> >>> Jersey City Campus | 100 Town Square Place | Suite 305

> >>> Jersey City, NJ 07310

> >>> Cell:

> >>> Email: Jrstr@... <mailto:Jrstr%40email.phoenix.edu>

<mailto:Jrstr%40email.phoenix.edu>

> <mailto:Jrstr%40email.phoenix.edu>

> >>>

> >>> On Jan 15, 2012, at 9:47 PM, Janet Colello <janetcolello@...

<mailto:janetcolello%40yahoo.com>

> <mailto:janetcolello%40yahoo.com>

> >> <mailto:janetcolello%40yahoo.com> > wrote:

> >>>

> >>>> Thank you Judy for your kind words. I am kind of in contact with

Jim's

> >> kids. Although, we were all close at one time, when Jim became ill they

> >> disappeared and showed up occasionally. They seemed more interested in

> how

> >> much they could make off of the house and were talking about it even

> while

> >> Jim was in the process of dying. I told them to be quiet, because

hearing

> >> is

> >> one of the last senses to go and I am sure Jim could hear them. They

made

> >> me

> >> angry when they put the house up for sale so soon after Jim died. I

never

> >> gave them my new address, they can e-mail me or text message me, but I

> >> don't

> >> want them to come visiting. I heard from them over the holidays on

e-mail

> >> and that was good enough.

> >>>>

> >>>> " I was thinking when this is over for a way to visit all of you -

> >> wouldn't it be moving to see the faces that match your names on the

> >> emails....sharing this with all of you is a savior to my bruised

> soul..... "

> >>>>

> >>>> Judy, I have met some of the group people. There are several in my

area

> >> where I live and we meet for coffee or lunch once in awhile.

> >>>> Do you have any in your area to meet with? I also met some at the

> >> Washington DC Conference for LBD several years ago. It was wonderful

> >> meeting

> >> the faces of the people that seem like family here. Every once in

awhile

> >> they do have group meetings or reunions in different states. They had

one

> >> in

> >> Michigan a few years ago, and Sandie started the first one ever with

this

> >> group in the early 2000s or maybe even late 90s, I wasn't even in this

> >> group

> >> yet. If you hear of one that isn't too far for you to travel they are

fun

> >> to

> >> go to and meet people from the group site. Every now and then someone

> will

> >> decide to set it up in a state where they live or a state near them. I

> >> didn't attend the one in Michigan, but they sent photos of it, and I

> talked

> >> to all the gang on the phone. I wish I could have attended, but I had

Jim

> >> to

> >> care for, it looked like fun. You can see the photos in the LBD album

of

> >> the

> >> group get-togethers. Anyone that wants to set up a group

> >>>> get-together can do it, but it's a lot of work. They need to get

group

> >> rates at a hotel and set everything up for the gathering, maybe some

> tours,

> >> and make sure everyone gets the information, so there is a turn out of

> >> people. If anyone is interested in doing something like that they are

> >> welcome to it. There is no committee that does this on an annual basis,

> >> it's

> >> done by whoever wants to do it. The ones that have gone before and done

> it,

> >> can help with info. on how to get it started I am sure.

> >>>>

> >>>>

> >>>>

> >>>> ________________________________

> >>>> From: Judy Strauss <jrstraussb@... <mailto:jrstraussb%40aol.com>

<mailto:jrstraussb%40aol.com>

> <mailto:jrstraussb%40aol.com> >

> >>>> To: " LBDcaregivers

<mailto:LBDcaregivers%40yahoogroups.com>

> <mailto:LBDcaregivers%40yahoogroups.com>

> >> <mailto:LBDcaregivers%40yahoogroups.com> "

<LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com>

> <mailto:LBDcaregivers%40yahoogroups.com>

> >> <mailto:LBDcaregivers%40yahoogroups.com> >

> >>>> Sent: Saturday, January 14, 2012 11:25 AM

> >>>> Subject: Re: Welcome New Members

> >>>>

> >>>> Hi Jan,

> >>>>

> >>>> It must have been such a shock to your system for Jim's kids to have

> >> sold the house within months of his passing...,I vaguely remember your

> >> writing about this last year here in the forum....do u have anything to

> do

> >> with the kids anymore ? I would think it may be a comfort to be in

touch

> >> with someone who shares Jim's DNA....only that is of they are kind to

> you.

> >>>>

> >>>> I guess there is no use to sit and wonder why this is all

> >> happening...and although i am not there yet I have no doubt in the

truth

> >> about not having your Loved one's presence anymore is mixed with the

> >> emotion

> >> that they are not suffering but you still miss them rings true for

me....

> >>>>

> >>>> I was thinking when this is over for a way to visit all of you -

> >> wouldn't it be moving to see the faces that match your names on the

> >> emails....sharing this with all of you is a savior to my bruised

> soul.....

> >>>>

> >>>> Jan, keep healing and thank you for staying here on the board to help

> >> us

> >> who are waking the road right behind you ....it's a noble deed and I

hope

> >> you get some solace in knowing that you are a great support....

> >>>>

> >>>> Xoxox

> >>>>

> >>>> Judy

> >>>>

> >>>> Judy R Strauss, LMSW, PhD

> >>>> Area Chair | College of Social Sciences

> >>>>

> >>>> University of Phoenix

> >>>> Jersey City Campus | 100 Town Square Place | Suite 305

> >>>> Jersey City, NJ 07310

> >>>> Cell:

> >>>> Email: Jrstr@... <mailto:Jrstr%40email.phoenix.edu>

<mailto:Jrstr%40email.phoenix.edu>

> <mailto:Jrstr%40email.phoenix.edu>

> >>>>

> >>>> On Jan 14, 2012, at 1:46 PM, Janet Colello <janetcolello@...

<mailto:janetcolello%40yahoo.com>

> <mailto:janetcolello%40yahoo.com>

> >> <mailto:janetcolello%40yahoo.com> > wrote:

> >>>>

> >>>>> Hi Judy,

> >>>>> It was odd not to see any posts here for a few days. I have been on

> >> this site since 2003 and there are lulls, but there has never been a

lull

> >> where there is not one person here that I have seen. I'm so sorry to

hear

> >> about your emotional happenings. I too am experiencing a lot of tearful

> >> moments that just seem to pop up out of nowhere. This coming week is

the

> >> year anniversary of Jim's passing. My birthday is on the 21st and Jim

> >> passed

> >> in the early morning of the 22nd. I prayed he would not pass on my

> >> birthday.

> >> Hospice said that was the day that they had determined he would go. In

> >> Jim's

> >> weak shape I know he did not know it was my birthday, but he managed to

> >> hold

> >> on one day and left me on the 22nd. I was numb the day he died, and

> things

> >> moved so fast after his death, since he left the house in a Trust to

his

> >> kids. He lived in that house before we were married. His kids put the

> house

> >> up for sale 2 months after he passed, and I had to pack and move out

> >>>>> since the house sold fast. I had no time to go through Jim's things.

> >> I

> >> had to scale way down, since I moved to a much smaller place. I gave

them

> >> all to a church and they brought his equipment; wheelchair etc......

and

> >> things all over the world and blessed the world with them. It lifted my

> >> heart to hear that Jim still did so much for others when he was gone.

> >>>>> Things moved so fast then there was barely time to grieve and I am

> >> really feeling it this year without him.

> >>>>> No matter how you cut it, Lewy is a horrible disease, their being is

> >> there with you when they are living, but they are not the same person

> >>>>> you knew and grieving starts then, but their presence means so much.

> >> When they are gone you rejoice that they no longer suffer, but you miss

> >> their presence.

> >>>>> I hope you find some solace in this day that you are not alone.

> >>>>> Jan Colello

> >>>>> Husband, Jim, dx w/LBD 2003

> >>>>> Deceased, January 2011

> >>>>>

> >>>>> ________________________________

> >>>>> From: Judy Strauss <jrstraussb@... <mailto:jrstraussb%40aol.com>

<mailto:jrstraussb%40aol.com>

> <mailto:jrstraussb%40aol.com>

> >>>

> >>>>> To: " LBDcaregivers

<mailto:LBDcaregivers%40yahoogroups.com>

> <mailto:LBDcaregivers%40yahoogroups.com>

> >> <mailto:LBDcaregivers%40yahoogroups.com> "

<LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com>

> <mailto:LBDcaregivers%40yahoogroups.com>

> >> <mailto:LBDcaregivers%40yahoogroups.com> >

> >>>>> Sent: Friday, January 13, 2012 6:05 PM

> >>>>> Subject: Re: Welcome New Members

> >>>>>

> >>>>> Hi Jan,

> >>>>>

> >>>>> OMG - I was thinking the same thing Jan. I have been so down this

> >> last

> >> week- feeling scared and alone with my sadness about my mom. I drove to

> the

> >> university last night for a workshop:training and cried the whole way

> down.

> >> It takes me app 1 hour to get there.

> >>>>>

> >>>>> I suppose it's the beginning of a new year that is bringing me down

> >> as

> >> of late. I cling to my husband who is quite a bit older than me....all

> the

> >> while scared of losing him too.....

> >>>>>

> >>>>> My mom has been unable to speak, walk, been incontinent and not

> >> recognizing me for almost a year now... Do others here feel that after

> >> going

> >> through all these losses while their loved one is alive over the years

> they

> >> decline prepare them for their eventual demise ??

> >>>>>

> >>>>> Not seeing posts for several days made me recognize once more how

> >> important you all are to me and my wellbeing.

> >>>>>

> >>>>> Thank you,

> >>>>>

> >>>>> Judy

> >>>>>

> >>>>> Judy R Strauss, LMSW, PhD

> >>>>> Area Chair | College of Social Sciences

> >>>>>

> >>>>> University of Phoenix

> >>>>> Jersey City Campus | 100 Town Square Place | Suite 305

> >>>>> Jersey City, NJ 07310

> >>>>> Cell:

> >>>>> Email: Jrstr@... <mailto:Jrstr%40email.phoenix.edu>

<mailto:Jrstr%40email.phoenix.edu>

> <mailto:Jrstr%40email.phoenix.edu>

> >>>>>

> >>>>> On Jan 13, 2012, at 8:39 PM, Janet Colello <janetcolello@...

<mailto:janetcolello%40yahoo.com>

> <mailto:janetcolello%40yahoo.com>

> >> <mailto:janetcolello%40yahoo.com> > wrote:

> >>>>>

> >>>>>>

> >>>>>>

> >>>>>> Where is everyone? For two days I have not one LBD Post. Am I not

> >> getting them or is it a down time?

> >>>>>> Jan Colello

> >>>>>>

> >>>>>> ________________________________

> >>>>>> From: <octoryrose@...

<mailto:octoryrose%40yahoo.com> <mailto:octoryrose%40yahoo.com>

> <mailto:

> >> octoryrose%40yahoo.com>

> >>>

> >>>>>> To: LBDcaregivers

<mailto:LBDcaregivers%40yahoogroups.com>

> <mailto:LBDcaregivers%40yahoogroups.com>

> >> <mailto:LBDcaregivers%40yahoogroups.com>

> >>>>>> Sent: Thursday, January 12, 2012 3:17 AM

> >>>>>> Subject: 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

> >> <http://www.lbda.org/index.cfm?fuseaction=product.print

> <http://www.lbda.org/index.cfm?fuseaction=product.print

<http://www.lbda.org/index.cfm?fuseaction=product.print & product_id=10255>

& product_id=10255>

> & product_id=10255>

> >> & 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=newss

> >> earch

> >>>>>>

> >>>>>> 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

> >> <http://interactive.snm.org/index.cfm?PageID=7405

> <http://interactive.snm.org/index.cfm?PageID=7405

<http://interactive.snm.org/index.cfm?PageID=7405 & RPID=627> & RPID=627>

& RPID=627>

> & 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.

> >>>>>>

> >>>>>> ------------------------------------

> >>>>>>

> >>>>>> Welcome to LBDcaregivers.

> >>>>>>

> >>>>>>