Guest guest Posted June 30, 2011 Report Share Posted June 30, 2011 this is good info. on the drugs. we have found the same results as you show. drugs we got off of include; detrol,ativan, risperidone, and zyprexa. chlopromazine is a.k.a. thorazine, and hadol is also very strong. if your loved one gets stuck in a hospital- they like to use both of those. i suggest not, but check with your dr. sometimes they give patients drugs to make their own( the dr. and staff) life better by calming? down your LO. my wife (59) is now using cloziril and aricept with some success. by success, i mean staying out the hospital and longer gaps before dr. visits. gary (san diego)p.s. to get the cloziril, you have to draw blood EVERY WEEK for the first 6 months (can reduce white blood cells). then you only get 1 weeks worth of drugs at a time. not all drug stores will monitor this for you. and yes, it is a $%^ & ! in the butt. LBD puts you between a rock and a hard spot. not liking the journey so far. also, wife fell down on her rear at denny's this morning. nothing broken this time. i was paying the bill and told her to sit on lobby sofa. didn't watch for 2 seconds and boom. DLB falls down a lot, apparantly. gary > > 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/category/3515/chat-transcripts.htm > > 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 July 22, 2011 Report Share Posted July 22, 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/category/3515/chat-transcripts.htm 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...
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