Guest guest Posted January 30, 2011 Report Share Posted January 30, 2011 Hi , If you have your Mom's medical POA, the nurses should listen to you when you tell them to take her off the Detrol. Please contact me via email if you would like to talk on the phone...I can give you my number that way; it is safer than posting it on this forum and other groups caution that saying that there can be people that hijack the group and get the info. Give your Mom a big hug for me! Have her give you a hug from me to you! God bless you...you are in my prayers. Love, Joan > > Thank you Joan, I am glad as always to hear from you and your > sweet positive words. I am going to ask the week-end nurse today > if she can look on Mom's chart and see if she is off Detrol yet. If > not, then come Monday morning with the more " alert " staff on > board, I will get the ball rolling to see how I can get her off of this. > And if they tell me the dr. has to ok this first, I will tell them, > this was suppose to have been given to him last week. And then > I will have them to give the dr. my phone number to call me to > talk to him about this. > > I'm rarely ever on my home phone. Its one of the old fashioned > phones where you can't take it off, it sits still, desk phone. I > had the phones where you can take anywhere in the house, but > my daughter or someone would never hang it up!! And so I would > never have a phone when I needed. So for me to sit still and talk > on the phone, with my ADHD, is like tying me down, LOL! I use > my cell phone to call only one of my friends here in town when I > am driving in the car to go see my mom at the home for only about > 10 min. I only have free min. week-ends. I can talk on week-ends > if that is ok on my cell. Hopefully we can talk soon. > Love and Prayers! > > > > > > > > > Dear , > You and your sweet Mom are in my prayers. I think that after your Mom gets > off the Detrol, the hallucinations should start to disappear. And, yes, I > do want her arm to heal so that she can be off the pain meds too. > Please feel free to write to me offline and perhaps I can even call you > because I have unlimited long distance. > Take care, > Love and prayers, > Joan > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2011 Report Share Posted August 11, 2011 I'm glad you found us. First & foremost: NO TRADITIONAL ANTIPSYCHOTICS (e.g. Haldol, Chlorpromazine), </div> 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 September 3, 2011 Report Share Posted September 3, 2011 My husband of 56 year has just been told that he ha LBD. We are up tight and know so little. He has been put on Serquel,Arceipt, and Namenda. It has him calmed down but he sleeps and watch TV most of the day. Any kind words well help us! Thanks so much Subject: Welcome New Members To: LBDcaregivers Date: Thursday, September 1, 2011, 4:30 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...
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