Guest guest Posted December 2, 2010 Report Share Posted December 2, 2010 Many thanks ! Here is the latest with my Dad per my sister. They don't do anything for broken ribs, they heal on their own and takes about 3 months or so. The pnuemonia they stopped treating back at Trama ICU. His body is to take over. They are only handing out meds and checking his bl.p. every 2 to 3 hours. He isn't there for the LBD. They cant transfer him to neurology because he has already been diagnosed and this is just the progression of things. That doesn't make it any easier on him or family. Meds. I'm not sure of all but antibiotics for the PN. Seroquel low dose 50-100 mg for agitation every morning and night and Trazadone 100 mg at night. Had patch but it became too much meds and caused low blood pressure. Skilled nursing in our community would not take dad because he only qualified with the physical therapy but he is a risk factor because of falling and they can not restrain him. After what I saw even with a sitter if he had not been restrained he would have gotten up. In a facility such as the one we visited, there was no place for him to even go if they let him get up. It is just a bed and a shared toilet. So the plan this morning is mom is going to find Dr .to tell him what we are up against and what we want if he has to come home with 24hr support, physical therapy and a nurse. We aren't sure if this is possible. She is going to stall for more time too. In the meantime, she is calling other skilled nursing facilities to see who will take him while he rehabilitates and can deal with the LBD Thank you, Sheri A. Farinha Chief Executive Officer NorCal Services for Deaf & Hard of Hearing 4708 Roseville Rd, Suite 111 North Highlands, CA 95660 www.norcalcenter.org Email: SFarinha@... Pager: xoSheri@... Telephone: VP: (916)993-3040 or (916)626-4928 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/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 April 23, 2011 Report Share Posted April 23, 2011 I will try this again. Welcome New Members To: LBDcaregivers Date: Thursday, April 21, 2011, 6:26 AM  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 April 26, 2011 Report Share Posted April 26, 2011 I'm confused - this is how you post - what you just did by responding to this message. > > , >  My name is Sharon Stalnaker, my mother was diagnosed in Jan. 2010. I am a member of LBDcaregivers, but I can't get signed in so I can post. I have sent 2 messages on the website for help and no one has responded. Can you help me? > sharon > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2011 Report Share Posted May 5, 2011 I've been wondering, if these drugs -Benadryl, Tylenol PM, Detrol, Enablex, etc.-aren't good for our LO's, what they are doing to us. I plan on checking this list often and avoiding those drugs as much as possible for myself. When I used to take to the doctor's and read the precautions on the medications he was prescribing, I often thought of saying, " But doctor, you don't understand. He already has nausea, headaches and dizziness. We're looking for something to prevent that. " > > 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 June 9, 2011 Report Share Posted June 9, 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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