Guest guest Posted December 31, 2011 Report Share Posted December 31, 2011 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' – 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2011 Report Share Posted December 31, 2011 To my LBD Caregivers friends -Pearl finished her ten-year LBD journey to Heaven on December 26th.I am no longer a caregiver.Happy New Year to all,Tom www.caringbridge.org/visit/pearlclark Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2011 Report Share Posted December 31, 2011 My condolences to you at this difficult time. I am sorry for your loss. Peace be with you and may the New Year treat you well. Jan Colello Husband, Jim dx w/LBD 2003 Deceased, January 2011 ________________________________ To: lbdcaregivers Sent: Saturday, December 31, 2011 11:15 AM Subject: RE: Welcome New Members To my LBD Caregivers friends -Pearl finished her ten-year LBD journey to Heaven on December 26th.I am no longer a caregiver.Happy New Year to all,Tom www.caringbridge.org/visit/pearlclark Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2012 Report Share Posted January 13, 2012 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 ________________________________ To: LBDcaregivers 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 & 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' – 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2012 Report Share Posted January 13, 2012 I didn't realize there had been no messages. I had a bad neck and have been babying it. But I have been checking in. Guess with no snow in MI, we have been running and getting stuff done as we heard it was coming today and yesterday. We got some snow, but not a lot. I guess Chicago got it good. Maybe we will see some more messages tomorrow. Sorry Judy. It is that after the Holiday blues I bet. Hope you are feeling better. Donna R 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' – 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2012 Report Share Posted January 13, 2012 Hi Judy, I too have been feeling alone. It is such a heart rending feeling to experience the decline/loss of the loved one we knew. It seems like the grief is as intense as mourning the actual passing. How painful to not be recognized by your mother. Whether it is parent or spouse, the relationship can never be recaptured, except perhaps in a fleeting loving glance. You have my deepest empathy. starts steroids Mon. He is so weak now. Can barely stand to make transfers. Now he can't feed himself very well. Tonight I fed him soup. Who knows how treatment will go. Anyway, Lewy or cancer, is suffering. And I suffer with him. Hang in there. The people we love are still in there on some level. W. Sent from my iPhone > 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@... > > > > > > > > > > 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 > > > > ________________________________ > > > > To: LBDcaregivers > > 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 & 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' – 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. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2012 Report Share Posted January 14, 2012 Dear Judy, My heart aches for you. I cannot imagine my mom not recognizing me or speaking any words at all. I think it was Jan who posted the stages of Lewy Body along with the stages of grief. It makes so much sense. I wonder the same question you asked if the long process of Lewy Body and the grief with it eases the ending phase. I too cling to my husband who is older than me. He was sick this week and he smokes (and won't quit) and is having lung problems which I just learned may be causing his dementia type symptoms. I too have been feeling so alone this week and scared. Another thing is that I feel isolated from most of my friends. Friends who are living " normal " lives were understanding in the beginning. But this has become years and I can tell they don't want to hear it anymore. I did make a new friend in the last few weeks with another caregiver at my mom's facility. This has been a godsend to me. Bless you Judy. I will say special prayers for you today. Marcie _____ From: LBDcaregivers [mailto:LBDcaregivers ] On Behalf Of Judy Strauss Sent: Friday, January 13, 2012 9:05 PM To: LBDcaregivers 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> On Jan 13, 2012, at 8:39 PM, Janet Colello <janetcolello@... <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> > > To: LBDcaregivers <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 & 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 & 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. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2012 Report Share Posted January 14, 2012 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 ________________________________ To: " LBDcaregivers " <LBDcaregivers > 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@... > > > 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 > > ________________________________ > > To: LBDcaregivers > 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 & 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' – 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. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2012 Report Share Posted January 14, 2012 Dear Jan, Was about log off when I read your post. I'm sorry to know you are feeling this sadness as well. Your posts have been a continual inspiration to me. The lengths you went to in caring for Jim were amazing - all the creative ideas you had for being with him, the cruise ship ideas especially. I will never forget your post about everyone saluting Jim at the end. I'm sure many others on this site are grateful for your continued presence here, even a year after losing Jim. Your integrity and strength are obvious. I hope the sun comes out brightly in your life. You certainly deserve it. Take care, Marcie _____ From: LBDcaregivers [mailto:LBDcaregivers ] On Behalf Of Janet Colello Sent: Saturday, January 14, 2012 1:46 PM To: LBDcaregivers Subject: Re: Welcome New Members 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> > To: " LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> " <LBDcaregivers <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> On Jan 13, 2012, at 8:39 PM, Janet Colello <janetcolello@... <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> > > To: LBDcaregivers <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 & 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 & 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. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2012 Report Share Posted January 14, 2012 Dear , Wishing you and good luck on Monday! I hope things go as well as they possibly can. Judy, hang in there - I completely understand how you feel. I've been feeling very down lately, too. Maybe it's just the inevitable decline that I witness.... we just have to push through it and be there for our loved ones. Hugs to everyone, Helene in NY (Mom 77, about 12 years with LBD at home) > > > > > > > > > > > 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 > > > > > > ________________________________ > > > > > > To: LBDcaregivers > > > 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 & 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' †" 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. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2012 Report Share Posted January 14, 2012 Dear Jan, You've been on my mind a lot lately - I know the anniversary is coming up. Thank you for sharing your feelings. I know how much you must miss him, even though you are grateful that his struggle is over. Sending you love and hugs, Helene in NY > > > > > > > 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 > > > > ________________________________ > > > > To: LBDcaregivers > > 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 & 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' †" 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. > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.