Guest guest Posted September 1, 2008 Report Share Posted September 1, 2008 Dear Kat, We have gone through so many ups and downs with Joyce's meds, too. It is a roller coaster ride. We have meds in place now that seem to work - most of the time -- but even then, sometimes they don't. The hallucinations pop up suddenly out of nowhere, the depression comes and goes, the confusion is sometimes so total that we don't think she'll ever come out of it and then suddenly, boom, she's totally lucid. I am actually in awe over all of it -- not a good awe, but a mystified, overwhelemed, sort of uncomprehending awe. I just go with the flow, day by day. Right now, we've stuck with her combination of meds just because overall, in general, they seem to work, and we have learned to make changes very carefully, very slowly, and with great caution. You are a blessing to your mother, Kat - the fact that you are paying attention, and are tuned into your Mom's situation, is wonderful, and I think it is much much more than she would generally get either in a hospital or nh situation. That's based on my personal experience, and I'm sure there are some wonderful care facilities out there; it is just that in our experience, they've been traumatic to Joyce, and have paid but minimal attention to her and to her needs. Take care, Kat, and best wishes! Kate, Caregiver for MOL, Joyce: 83, diagnosed with LBD circa 2003/2004 (but looking back, she was symptomatic much earlier than that). > > Thanks for the welcome Donna. > Any way I can cut a patch in half? Mom's really delusional on Abilify and Exelon. I have cut the Abilify in half already. > Kat > Caregiver for Jane, Mom, 86, brain stem stroke survivor 2/06, diagnosed 3/08 LBD > > > > New Member > > Hi All, > I have kinda been observing how things work. Here is my intro: > My Mom has been seeing a Neurologist since her hemmoraghic brain stem > stroke in Feb '06. Zolpidem was given during her stay in rehab for a > week after the stroke. She was misdiagnosed with side effects from > medicines and low vision (which causes hallucinations) . She is also > dealing with double vision and balance issues from the stroke. 20 > months after the stroke, she had learned to walk and do the stairs > both with assistance. At 86 years young, she told her > Neurologist, " I'm an old lady now. I'm 86 you know. " Clonazepam was > considered the wonder drug that helped control her anxiety and > uncontrollable movements of her left leg allowing her to walk with > little assistance. She has had care 24/7 since her stroke and thinks > I hold her back by not allowing her to walk by herself, " And when are > you going to let these girls (caregivers) go and leave me alone? " > In 10/07 her complaint was a man singing in her head. He didn't have > a bad voice. He just sang the same songs over and over. Neurologist > started with Seroquel then switched to Zyprexa. Mom had problems > walking on these meds and was trying to perform in rehab for her > stroke in order to qualify for more rehab. I chose rehab over the > singing in the head. At this time we could explain away the > hallucinations. She had several bouts with pneumonia all cured at > home with antibiotics. Levaquin was ruled a contributor to her drug > induced hallucinations. A neuropsych eval in 2/08 showed lewy body > disorder without dementia. Neurologist put her on Namenda in 4/08. > She suggested a Geriatric Psychiatrist, who took her off Namenda and > put her on Abilify and Exelon. No mention of the Clonazepam by the > Psychiatrist. I worked to get the dosage up on the Clonazepam to > help with the tremors in her left shoulder and uncontrollable kicking > of her left leg which seemed to be getting stiffer and she complained > that her foot was stuck on the floor (both stroke or so I thought). > I then started the Abilify. I received a call at work that an > ambulance had been called by daycare because my Mother was > unresponsive. The Psychiatrist told me no way the Abilify would > affect her walking. ER said she was over medicated. Hmmmm > Stop Abilify; lower Clonazepam; call Psychiatrist. He pats me on the > back. Now he says Clonazepam is not good for someone hallucinating. > Thanks. Neurologist confirms I should follow the Psychiatrist now > that she is diagnosed. Note to self: time to accept clinical > diagnosis of LBD any more proof will come in symptoms...until death. > Today she is on her second week without Clonazepam. I always hated > that drug. It's not covered by any insurance. Look forward. > Prozac, Abilify, Exelon are the mix of the moment. > Kat > Caregiver for Jane, Mother, 86, diagnosed 3/08 LBD > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2008 Report Share Posted September 1, 2008 Hi again, Kat, I just wanted to say I understand completely how overwhelming all the conversations and situations seem. I always feel guilty that I can't keep up with everything, and every one. But these are wonderful people, and it is a great place to find support -- which is what we all need. I don't think any one minds or expects us to keep up with everything - and I know they are very forgiving I will be praying for your migraines, Kat. In His Peace, Kate Caregiver for MOL, Joyce: 83, diagnosed with LBD circa 2003/2004 (but looking back, she was symptomatic much earlier than that). > > > > Hi All, > > I have kinda been observing how things work. Here is my intro: > > My Mom has been seeing a Neurologist since her hemmoraghic brain > stem > > stroke in Feb '06. Zolpidem was given during her stay in rehab for > a > > week after the stroke. She was misdiagnosed with side effects from > > medicines and low vision (which causes hallucinations) . She is > also > > dealing with double vision and balance issues from the stroke. 20 > > months after the stroke, she had learned to walk and do the stairs > > both with assistance. At 86 years young, she told her > > Neurologist, " I'm an old lady now. I'm 86 you know. " Clonazepam > was > > considered the wonder drug that helped control her anxiety and > > uncontrollable movements of her left leg allowing her to walk with > > little assistance. She has had care 24/7 since her stroke and > thinks > > I hold her back by not allowing her to walk by herself, " And when > are > > you going to let these girls (caregivers) go and leave me alone? " > > In 10/07 her complaint was a man singing in her head. He didn't > have > > a bad voice. He just sang the same songs over and over. > Neurologist > > started with Seroquel then switched to Zyprexa. Mom had problems > > walking on these meds and was trying to perform in rehab for her > > stroke in order to qualify for more rehab. I chose rehab over the > > singing in the head. At this time we could explain away the > > hallucinations. She had several bouts with pneumonia all cured at > > home with antibiotics. Levaquin was ruled a contributor to her > drug > > induced hallucinations. A neuropsych eval in 2/08 showed lewy body > > disorder without dementia. Neurologist put her on Namenda in > 4/08. > > She suggested a Geriatric Psychiatrist, who took her off Namenda > and > > put her on Abilify and Exelon. No mention of the Clonazepam by the > > Psychiatrist. I worked to get the dosage up on the Clonazepam to > > help with the tremors in her left shoulder and uncontrollable > kicking > > of her left leg which seemed to be getting stiffer and she > complained > > that her foot was stuck on the floor (both stroke or so I > thought). > > I then started the Abilify. I received a call at work that an > > ambulance had been called by daycare because my Mother was > > unresponsive. The Psychiatrist told me no way the Abilify would > > affect her walking. ER said she was over medicated. Hmmmm > > Stop Abilify; lower Clonazepam; call Psychiatrist. He pats me on > the > > back. Now he says Clonazepam is not good for someone > hallucinating. > > Thanks. Neurologist confirms I should follow the Psychiatrist now > > that she is diagnosed. Note to self: time to accept clinical > > diagnosis of LBD any more proof will come in symptoms...until death. > > Today she is on her second week without Clonazepam. I always hated > > that drug. It's not covered by any insurance. Look forward. > > Prozac, Abilify, Exelon are the mix of the moment. > > Kat > > Caregiver for Jane, Mother, 86, diagnosed 3/08 LBD > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2008 Report Share Posted September 1, 2008 Kat, Kate and Kat I need to find a way to identify you both. And when Kate sends Kat a message I really get going. I tried to attach you to your LO and Jane and Joyce both start with J and that wasn't a whole lot of help. Can you both maybe use your state abbreviation or some other identifer? That might help. Thanks! Anyway, Kat, I don't know if you can cut the patch in half. My Mom just couldn't take that kind of med. I didn't even try Exlon because she had gone so wild on Aricept and I was afraid to try a different one. And they didn't have patches out before. Maybe the Pharmacy could help you with that if you call. One of the things I did with one of Mom's anti-anxiety pills, was to cut it in quarters and give it to her 4 x's a day. It worked real good and was the only med for dementia that I gave Mom. I know there are some pills you can't cut, but they say that is because you might not cut them to get equal amounts. That is a different story. Maybe with the patch, you would get the full amount but not as long. I don't know. Anyone else here do half patches? Maybe someone will let us know. Hugs, Donna R Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in a nh. She was almost 89 when she died in '02. No dx other than mine. Re: New Member Dear Kat, We have gone through so many ups and downs with Joyce's meds, too. It is a roller coaster ride. We have meds in place now that seem to work - most of the time -- but even then, sometimes they don't. The hallucinations pop up suddenly out of nowhere, the depression comes and goes, the confusion is sometimes so total that we don't think she'll ever come out of it and then suddenly, boom, she's totally lucid. I am actually in awe over all of it -- not a good awe, but a mystified, overwhelemed, sort of uncomprehending awe. I just go with the flow, day by day. Right now, we've stuck with her combination of meds just because overall, in general, they seem to work, and we have learned to make changes very carefully, very slowly, and with great caution. You are a blessing to your mother, Kat - the fact that you are paying attention, and are tuned into your Mom's situation, is wonderful, and I think it is much much more than she would generally get either in a hospital or nh situation. That's based on my personal experience, and I'm sure there are some wonderful care facilities out there; it is just that in our experience, they've been traumatic to Joyce, and have paid but minimal attention to her and to her needs. Take care, Kat, and best wishes! Kate, Caregiver for MOL, Joyce: 83, diagnosed with LBD circa 2003/2004 (but looking back, she was symptomatic much earlier than that). > > Thanks for the welcome Donna. > Any way I can cut a patch in half?� Mom's really delusional on Abilify and Exelon.� I have cut the Abilify in half already. > Kat > Caregiver for Jane, Mom, 86, brain stem stroke survivor 2/06,�diagnosed 3/08 LBD > > > > New Member > > Hi All, > I have kinda been observing how things work. Here is my intro: > My Mom has been seeing a Neurologist since her hemmoraghic brain stem > stroke in Feb '06. Zolpidem was given during her stay in rehab for a > week after the stroke. She was misdiagnosed with side effects from > medicines and low vision (which causes hallucinations) . She is also > dealing with double vision and balance issues from the stroke. 20 > months after the stroke, she had learned to walk and do the stairs > both with assistance. At 86 years young, she told her > Neurologist, " I'm an old lady now. I'm 86 you know. " Clonazepam was > considered the wonder drug that helped control her anxiety and > uncontrollable movements of her left leg allowing her to walk with > little assistance. She has had care 24/7 since her stroke and thinks > I hold her back by not allowing her to walk by herself, " And when are > you going to let these girls (caregivers) go and leave me alone? " > In 10/07 her complaint was a man singing in her head. He didn't have > a bad voice. He just sang the same songs over and over. Neurologist > started with Seroquel then switched to Zyprexa. Mom had problems > walking on these meds and was trying to perform in rehab for her > stroke in order to qualify for more rehab. I chose rehab over the > singing in the head. At this time we could explain away the > hallucinations. She had several bouts with pneumonia all cured at > home with antibiotics. Levaquin was ruled a contributor to her drug > induced hallucinations. A neuropsych eval in 2/08 showed lewy body > disorder without dementia. Neurologist put her on Namenda in 4/08. > She suggested a Geriatric Psychiatrist, who took her off Namenda and > put her on Abilify and Exelon. No mention of the Clonazepam by the > Psychiatrist. I worked to get the dosage up on the Clonazepam to > help with the tremors in her left shoulder and uncontrollable kicking > of her left leg which seemed to be getting stiffer and she complained > that her foot was stuck on the floor (both stroke or so I thought). > I then started the Abilify. I received a call at work that an > ambulance had been called by daycare because my Mother was > unresponsive. The Psychiatrist told me no way the Abilify would > affect her walking. ER said she was over medicated. Hmmmm > Stop Abilify; lower Clonazepam; call Psychiatrist. He pats me on the > back. Now he says Clonazepam is not good for someone hallucinating. > Thanks. Neurologist confirms I should follow the Psychiatrist now > that she is diagnosed. Note to self: time to accept clinical > diagnosis of LBD any more proof will come in symptoms...until death. > Today she is on her second week without Clonazepam. I always hated > that drug. It's not covered by any insurance. Look forward. > Prozac, Abilify, Exelon are the mix of the moment. > Kat > Caregiver for Jane, Mother, 86, diagnosed 3/08 LBD > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2008 Report Share Posted October 4, 2008 Welcome Laurie, I'm sorry that you are in this position Laurie. How is your dad handling all this? Please keep us posted on how things go with the neuro doc on Monday ok? His, Sherry www.owly.net daughter of , (mis?)diagnosed with AD in 2005, descent slowed by Aricept; diagnosed with LBD March 2008, in a wonderful NH 1/2 mile from my house. We're learning to live with Lewy... ----- Original Message ----- > I am writing here because my mother was given a preliminary diagnosis of > LBD. She is just 58 as of a few weeks ago. She lives with my father, I > am 20 min away and my brother is 3 hours away. She started with hearing > voices in the house, and thinking the house was tapped. (backing up I > honestly believe she has undiagnosed and untreated depression since my > birth) She than went on to lose words in her sentences. She has been on > abilify to take care of the psychosis, and now that we are thinking LBD, > we are thinking it hass hastened the parkonisms that she has now. I am > going to talk to her neurologist on monday. He changed her to seroquel, > but I am wondering if we should not scale it back or try to stop it for > awhile. She has been at the same job for 38 years. They had to reduce > her job to bagging groceries from stocking shelves. We found out > yesterday she is not doing that well now. This has all been over a year > and a half that the psychosis started(crisis) and about 3 years since she > started making small comments about the house being bugged and paranoia. I > am almost done my degree in mental health and human services, and a minor > in geriatric human services. Just in time I guess, ugg! > She was still driving as of yesterday, but I am worried about it now. I > am worried she will not beable to make a judgement call. We had an EEG > with major slowing in the brain areas, we are having an MRI next week (we > had on last march showing no changes), we are also going to see a > neuropsych and having a PET??? We are in Maine, and I am looking for a > geriatric specialist. I am not sure that is even the way to go. > Thank you all for being here, and also thank you for listening to this. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2008 Report Share Posted October 4, 2008 Welcome Laurie F. - here's my 'welcome links' I'm glad you found us. First & foremost: NO TRADITIONAL ANTIPSYCHOTICS (e.g. Haldol, Chlorpromazine), NO BENZODIAZEPINES (e.g. Ativan) NO ANTICHOLINERGIC DRUGS (e.g. Benadryl, Tylenol PM, Detrol, Enablex) 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 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://www.lewybodydementia.org/AR0504BFB.php Diagnostic Review & Medicine Management by Bradley F. Boeve, MD (October 2004) Physicians guide to diagnosing and treating DLB/LBD. Includes recommended dosages. http://www.lewybodydementia.org/Boevelink.php *** 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/DS/00795.html LBD Brochure (to print use legal size paper) http://www.lewybodydementia.org/docs/LBDAbroch_webLGL.pdf " 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.lewybodydementia.org/docs/gomperts_transcript.pdf 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. > > > Greetings, > I am writing here because my mother was given a preliminary diagnosis of LBD. She is just 58 as of a few weeks ago. She lives with my father, I am 20 min away and my brother is 3 hours away. She started with hearing voices in the house, and thinking the house was tapped. (backing up I honestly believe she has undiagnosed and untreated depression since my birth) She than went on to lose words in her sentences. She has been on abilify to take care of the psychosis, and now that we are thinking LBD, we are thinking it hass hastened the parkonisms that she has now. I am going to talk to her neurologist on monday. He changed her to seroquel, but I am wondering if we should not scale it back or try to stop it for awhile. She has been at the same job for 38 years. They had to reduce her job to bagging groceries from stocking shelves. We found out yesterday she is not doing that well now. This has all been over a year and a half that the psychosis started(crisis) and about 3 years since she started making small comments about the house being bugged and paranoia. I am almost done my degree in mental health and human services, and a minor in geriatric human services. Just in time I guess, ugg! > She was still driving as of yesterday, but I am worried about it now. I am worried she will not beable to make a judgement call. We had an EEG with major slowing in the brain areas, we are having an MRI next week (we had on last march showing no changes), we are also going to see a neuropsych and having a PET??? We are in Maine, and I am looking for a geriatric specialist. I am not sure that is even the way to go. > Thank you all for being here, and also thank you for listening to this. > > Laurie French > > " There is much more to rescue than handling the dog. There are calls to be made, miles to drive, paperwork to fill out, records to keep. It all costs money. " ~Laurie French > For animals needing homes: www.petfinder.com > > www.neorescue.net > > http://www.mastiffrescue.org/ > > _________________________________________________________________ > See how Windows connects the people, information, and fun that are part of your life. > http://clk.atdmt.com/MRT/go/msnnkwxp1020093175mrt/direct/01/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2008 Report Share Posted October 4, 2008 Heidi, welcome to you. Not only will you become a better geriatric nurse with all you will learn here, but you will be better able to support Sherry by better understanding what she and her family are going through. She's lucky to have a friend like you. Gibsons BC Mother died Aug. 12, 2006 at age 92 after a 13 year decline from PDD. > > Hello everyone, > > I am a close friend of Sherry's and she has been letting me know how > things are going with her mom so I asked if she thought I could join > the group as well.I am an LPN currently working in pediatric home > care , have had years working in nursing homes both as a certified > aide and as a liscenced nurse.There is a possibility that I my go > back to geriatric nursing in the future and thought it would be a > good thing to be up to date as it were on diseases, etc of the > elderly.For the most part I'll probably be a lurker at least for a > bit,working nights and dealing with fibromyalgia sometimes all I do > is get my emails and skim them til I have time to read,lately I have > had alot of stress in my life so if I focus on others problems maybe > I can calm down a bit too. > So thanks for letting me be apart of this group and please don't let > me being in the medical profession worry you ,I'm not here to > judge,tell on you or anything like that ,I'm here to learn and offer > what support I can > When I post from my inbox I have some links in my sig tag if they are > unacceptable please just let me know and I'll use a different > signature > thank you > Heidi > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2008 Report Share Posted October 4, 2008 Welcome, Laurie, to the place no one wants to be. I am sorry to hear of your mother's dx at such an early age. My goodness, she should be in the prime of her life. I'm glad to hear you are in the medical profession and will probably be of much help to her. You will get lots of good information, so ask questions, and give your input as well. June (Husband Darrell dx'd AD 1999, probable LBD 2006, died Nov. 2006, autopsy showed both AD and LBD as well as possible stroke.) Subject: new member To: lbdcaregivers Date: Saturday, October 4, 2008, 8:41 AM Greetings, I am writing here because my mother was given a preliminary diagnosis of LBD. She is just 58 as of a few weeks ago. She lives with my father, I am 20 min away and my brother is 3 hours away. She started with hearing voices in the house, and thinking the house was tapped. (backing up I honestly believe she has undiagnosed and untreated depression since my birth) She than went on to lose words in her sentences. She has been on abilify to take care of the psychosis, and now that we are thinking LBD, we are thinking it hass hastened the parkonisms that she has now. I am going to talk to her neurologist on monday. He changed her to seroquel, but I am wondering if we should not scale it back or try to stop it for awhile. She has been at the same job for 38 years. They had to reduce her job to bagging groceries from stocking shelves. We found out yesterday she is not doing that well now. This has all been over a year and a half that the psychosis started(crisis) and about 3 years since she started making small comments about the house being bugged and paranoia. I am almost done my degree in mental health and human services, and a minor in geriatric human services. Just in time I guess, ugg! She was still driving as of yesterday, but I am worried about it now. I am worried she will not beable to make a judgement call. We had an EEG with major slowing in the brain areas, we are having an MRI next week (we had on last march showing no changes), we are also going to see a neuropsych and having a PET??? We are in Maine, and I am looking for a geriatric specialist. I am not sure that is even the way to go. Thank you all for being here, and also thank you for listening to this. Laurie French " There is much more to rescue than handling the dog. There are calls to be made, miles to drive, paperwork to fill out, records to keep. It all costs money. " ~Laurie French For animals needing homes: www.petfinder. com www.neorescue. net http://www.mastiffr escue.org/ ____________ _________ _________ _________ _________ _________ _ See how Windows connects the people, information, and fun that are part of your life. http://clk.atdmt. com/MRT/go/ msnnkwxp10200931 75mrt/direct/ 01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2008 Report Share Posted October 5, 2008 thanks for the welcome and the encouragement,just from the things Sherry has told me I got to thinking back on some of my past patients and think they probably had LBD and not altzheimers,I did notice a difference in the way many acted and all had the dx of altzheimers,its really sad that it takes so long to find that not everything can be grouped in a lump so to speak,things that have been around for ages like aids,fibromyalgia to name a few that have just recently been found out not to be something else, Heidi That you may retain your self respect,it is better to displease the people by doing what you know is right,than to temporarily please them by doing what you know is wrong J.A. Boetcker Re: new member > Heidi, welcome to you. Not only will you become a better geriatric nurse > with all you will > learn here, but you will be better able to support Sherry by better > understanding what she > and her family are going through. She's lucky to have a friend like you. > > Gibsons BC > Mother died Aug. 12, 2006 at age 92 after a 13 year decline from PDD. > > >> >> Hello everyone, >> >> I am a close friend of Sherry's and she has been letting me know how >> things are going with her mom so I asked if she thought I could join >> the group as well.I am an LPN currently working in pediatric home >> care , have had years working in nursing homes both as a certified >> aide and as a liscenced nurse.There is a possibility that I my go >> back to geriatric nursing in the future and thought it would be a >> good thing to be up to date as it were on diseases, etc of the >> elderly.For the most part I'll probably be a lurker at least for a >> bit,working nights and dealing with fibromyalgia sometimes all I do >> is get my emails and skim them til I have time to read,lately I have >> had alot of stress in my life so if I focus on others problems maybe >> I can calm down a bit too. >> So thanks for letting me be apart of this group and please don't let >> me being in the medical profession worry you ,I'm not here to >> judge,tell on you or anything like that ,I'm here to learn and offer >> what support I can >> When I post from my inbox I have some links in my sig tag if they are >> unacceptable please just let me know and I'll use a different >> signature >> thank you >> Heidi >> > > > > > ------------------------------------ > > Welcome to LBDcaregivers. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2008 Report Share Posted October 5, 2008 Dear Laurie, I know how heartbreaking it is to see a LO starting to deteriorate like that. All of us in this group have experienced the same concern and pain, so you came to the right place. Here you will find good advice, lots of useful information and many strong shoulders to cry on. I just lost my husband, a dear companion, to LBD. The road ahead will be difficult. Try to take care of yourself so you can be of help to your Mom. Welcome to our group! A big hug, Raquel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2008 Report Share Posted October 5, 2008 Hi Gladys, Can I have the name and number (if you have it) of the doc at Beth Israel? Thanks, Helene Subject: Re: new member To: LBDcaregivers Date: Sunday, October 5, 2008, 1:59 PM Hi, Laurie! It sounds like you are embarking on an internship you never wanted, but which will serve you very well in the years to come. Our social worker from the hospice told me the other day that her Dad has LBD. My heart broke for her but, at the same time, I was able to relate to her in a way that I would not have been able to with another social worker. I am sure she brings a level of insight and compassion to her job that can only come from life's experience and I am equally sure that you will be doing the same. Are you anywhere near a university or teaching hospital? We got the best answers from our neurologist at Beth Israel in Manhattan who has a movement disorders specialty. I now know that depression is one of the first symptoms of LBD. We missed that one because Mom's illness appears to have started slightly before my Dad's death. She was also falling unexpectedly, stepping off curbs, etc. and we attributed that to a long standing diagnosis of Meniere's Disease. We missed almost all of the first warning signs, but they are all clear as day when looking back. I don't know how I managed to excuse so many of them away as something else, but I never heard of LBD until 1 year ago. In hindsight, I believe Mom may have had LBD since as long ago as 2000. Again, I was shocked by your Mom's age. I'm guessing you are close in age to my daughter who has been indispensable to me in caring for my Mom. I'm so sorry that either of you has to deal with this at such a young age. Gladys -- new member Greetings, I am writing here because my mother was given a preliminary diagnosis of LBD She is just 58 as of a few weeks ago. She lives with my father, I am 20 min away and my brother is 3 hours away. She started with hearing voices in the house, and thinking the house was tapped. (backing up I honestly believe she has undiagnosed and untreated depression since my birth) She than went on to lose words in her sentences. She has been on abilify to take care of the psychosis, and now that we are thinking LBD, we are thinking it hass hastened the parkonisms that she has now. I am going to talk to her neurologist on monday. He changed her to seroquel, but I am wondering if we should not scale it back or try to stop it for awhile. She has been at the same job for 38 years. They had to reduce her job to bagging groceries from stocking shelves. We found out yesterday she is not doing that well now. This has all been over a year and a half that the psychosis started(crisis) and about 3 years since she started making small comments about the house being bugged and paranoia. I am almost done my degree in mental health and human services, and a minor in geriatric human services. Just in time I guess, ugg! She was still driving as of yesterday, but I am worried about it now. I am worried she will not beable to make a judgement call. We had an EEG with major slowing in the brain areas, we are having an MRI next week (we had on last march showing no changes), we are also going to see a neuropsych and having a PET??? We are in Maine, and I am looking for a geriatric specialist. I am not sure that is even the way to go. Thank you all for being here, and also thank you for listening to this. Laurie French " There is much more to rescue than handling the dog. There are calls to be made, miles to drive, paperwork to fill out, records to keep. It all costs money. " ~Laurie French For animals needing homes: www.petfinder. com www.neorescue. net http://www.mastiffr escue.org/ ____________ _________ _________ _________ _________ _________ _ See how Windows connects the people, information, and fun that are part of your life. http://clk.atdmt. com/MRT/go/ msnnkwxp10200931 75mrt/direct/ 01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2008 Report Share Posted October 5, 2008 Oh, Helene, He is WONDERFUL!!!! His name is Dr. Severt and his number is Gladys -- new member Greetings, I am writing here because my mother was given a preliminary diagnosis of LBD She is just 58 as of a few weeks ago. She lives with my father, I am 20 min away and my brother is 3 hours away. She started with hearing voices in the house, and thinking the house was tapped. (backing up I honestly believe she has undiagnosed and untreated depression since my birth) She than went on to lose words in her sentences. She has been on abilify to take care of the psychosis, and now that we are thinking LBD, we are thinking it hass hastened the parkonisms that she has now. I am going to talk to her neurologist on monday. He changed her to seroquel, but I am wondering if we should not scale it back or try to stop it for awhile. She has been at the same job for 38 years. They had to reduce her job to bagging groceries from stocking shelves. We found out yesterday she is not doing that well now. This has all been over a year and a half that the psychosis started(crisis) and about 3 years since she started making small comments about the house being bugged and paranoia. I am almost done my degree in mental health and human services, and a minor in geriatric human services. Just in time I guess, ugg! She was still driving as of yesterday, but I am worried about it now. I am worried she will not beable to make a judgement call. We had an EEG with major slowing in the brain areas, we are having an MRI next week (we had on last march showing no changes), we are also going to see a neuropsych and having a PET??? We are in Maine, and I am looking for a geriatric specialist. I am not sure that is even the way to go. Thank you all for being here, and also thank you for listening to this. Laurie French " There is much more to rescue than handling the dog. There are calls to be made, miles to drive, paperwork to fill out, records to keep. It all costs money. " ~Laurie French For animals needing homes: www.petfinder. com www.neorescue. net http://www.mastiffr escue.org/ ____________ _________ _________ _________ _________ _________ _ See how Windows connects the people, information, and fun that are part of your life. http://clk.atdmt. com/MRT/go/ msnnkwxp10200931 75mrt/direct/ 01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2008 Report Share Posted October 5, 2008 Dear Gladys, You are a doll! Thank you so much! Many hugs, Helene From: Gladys Stefany <agoramomptd (DOT) net> Subject: Re: new member To: LBDcaregivers@ yahoogroups. com Date: Sunday, October 5, 2008, 1:59 PM Hi, Laurie! It sounds like you are embarking on an internship you never wanted, but which will serve you very well in the years to come. Our social worker from the hospice told me the other day that her Dad has LBD. My heart broke for her but, at the same time, I was able to relate to her in a way that I would not have been able to with another social worker. I am sure she brings a level of insight and compassion to her job that can only come from life's experience and I am equally sure that you will be doing the same. Are you anywhere near a university or teaching hospital? We got the best answers from our neurologist at Beth Israel in Manhattan who has a movement disorders specialty. I now know that depression is one of the first symptoms of LBD. We missed that one because Mom's illness appears to have started slightly before my Dad's death. She was also falling unexpectedly, stepping off curbs, etc. and we attributed that to a long standing diagnosis of Meniere's Disease. We missed almost all of the first warning signs, but they are all clear as day when looking back. I don't know how I managed to excuse so many of them away as something else, but I never heard of LBD until 1 year ago. In hindsight, I believe Mom may have had LBD since as long ago as 2000. Again, I was shocked by your Mom's age. I'm guessing you are close in age to my daughter who has been indispensable to me in caring for my Mom. I'm so sorry that either of you has to deal with this at such a young age. Gladys -- new member Greetings, I am writing here because my mother was given a preliminary diagnosis of LBD She is just 58 as of a few weeks ago. She lives with my father, I am 20 min away and my brother is 3 hours away. She started with hearing voices in the house, and thinking the house was tapped. (backing up I honestly believe she has undiagnosed and untreated depression since my birth) She than went on to lose words in her sentences. She has been on abilify to take care of the psychosis, and now that we are thinking LBD, we are thinking it hass hastened the parkonisms that she has now. I am going to talk to her neurologist on monday. He changed her to seroquel, but I am wondering if we should not scale it back or try to stop it for awhile. She has been at the same job for 38 years. They had to reduce her job to bagging groceries from stocking shelves. We found out yesterday she is not doing that well now. This has all been over a year and a half that the psychosis started(crisis) and about 3 years since she started making small comments about the house being bugged and paranoia. I am almost done my degree in mental health and human services, and a minor in geriatric human services. Just in time I guess, ugg! She was still driving as of yesterday, but I am worried about it now. I am worried she will not beable to make a judgement call. We had an EEG with major slowing in the brain areas, we are having an MRI next week (we had on last march showing no changes), we are also going to see a neuropsych and having a PET??? We are in Maine, and I am looking for a geriatric specialist. I am not sure that is even the way to go. Thank you all for being here, and also thank you for listening to this. Laurie French " There is much more to rescue than handling the dog. There are calls to be made, miles to drive, paperwork to fill out, records to keep. It all costs money. " ~Laurie French For animals needing homes: www.petfinder. com www.neorescue. net http://www.mastiffr escue.org/ ____________ _________ _________ _________ _________ _________ _ See how Windows connects the people, information, and fun that are part of your life. http://clk.atdmt. com/MRT/go/ msnnkwxp10200931 75mrt/direct/ 01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2008 Report Share Posted October 5, 2008 Welcome to the group Laurie. My dad was 58 when diagnosed with LBD. It seems you are going into a field preplanned above your own being possibly knowing what the journey would be. There is a reason you choose mental health and human services. Wishing you all the best in this journey and I shall add you, your mom, and your family to my prayers. With hugs- Sandie Des Moines, IA dad, Merle, passed from LBD 9-20-02, at age 65 -- Laurie French wrote: Greetings, I am writing here because my mother was given a preliminary diagnosis of LBD. She is just 58 as of a few weeks ago. She lives with my father, I am 20 min away and my brother is 3 hours away. She started with hearing voices in the house, and thinking the house was tapped. (backing up I honestly believe she has undiagnosed and untreated depression since my birth) She than went on to lose words in her sentences. She has been on abilify to take care of the psychosis, and now that we are thinking LBD, we are thinking it hass hastened the parkonisms that she has now. I am going to talk to her neurologist on monday. He changed her to seroquel, but I am wondering if we should not scale it back or try to stop it for awhile. She has been at the same job for 38 years. They had to reduce her job to bagging groceries from stocking shelves. We found out yesterday she is not doing that well now. This has all been over a year and a half that the psychosis started(crisis) and about 3 years since she started making small comments about the house being bugged and paranoia. I am almost done my degree in mental health and human services, and a minor in geriatric human services. Just in time I guess, ugg! She was still driving as of yesterday, but I am worried about it now. I am worried she will not beable to make a judgement call. We had an EEG with major slowing in the brain areas, we are having an MRI next week (we had on last march showing no changes), we are also going to see a neuropsych and having a PET??? We are in Maine, and I am looking for a geriatric specialist. I am not sure that is even the way to go. Thank you all for being here, and also thank you for listening to this. Laurie French " There is much more to rescue than handling the dog. There are calls to be made, miles to drive, paperwork to fill out, records to keep. It all costs money. " ~Laurie French For animals needing homes: www.petfinder.com www.neorescue.net http://www.mastiffrescue.org/ _________________________________________________________________ See how Windows connects the people, information, and fun that are part of your life. http://clk.atdmt.com/MRT/go/msnnkwxp1020093175mrt/direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2008 Report Share Posted October 5, 2008 I know what you mean, Heidi. Many of us remember the days before even the Alzheimer's diagnosis when everyone was just diagnosed with " senility " . Gladys -- Re: Re: new member thanks for the welcome and the encouragement,just from the things Sherry has told me I got to thinking back on some of my past patients and think they probably had LBD and not altzheimers,I did notice a difference in the way many acted and all had the dx of altzheimers,its really sad that it takes so long to find that not everything can be grouped in a lump so to speak,things that have been around for ages like aids,fibromyalgia to name a few that have just recently been found out not to be something else, Heidi That you may retain your self respect,it is better to displease the people by doing what you know is right,than to temporarily please them by doing what you know is wrong J.A. Boetcker Re: new member > Heidi, welcome to you. Not only will you become a better geriatric nurse > with all you will > learn here, but you will be better able to support Sherry by better > understanding what she > and her family are going through. She's lucky to have a friend like you. > > Gibsons BC > Mother died Aug. 12, 2006 at age 92 after a 13 year decline from PDD. > > >> >> Hello everyone, >> >> I am a close friend of Sherry's and she has been letting me know how >> things are going with her mom so I asked if she thought I could join >> the group as well.I am an LPN currently working in pediatric home >> care , have had years working in nursing homes both as a certified >> aide and as a liscenced nurse.There is a possibility that I my go >> back to geriatric nursing in the future and thought it would be a >> good thing to be up to date as it were on diseases, etc of the >> elderly.For the most part I'll probably be a lurker at least for a >> bit,working nights and dealing with fibromyalgia sometimes all I do >> is get my emails and skim them til I have time to read,lately I have >> had alot of stress in my life so if I focus on others problems maybe >> I can calm down a bit too. >> So thanks for letting me be apart of this group and please don't let >> me being in the medical profession worry you ,I'm not here to >> judge,tell on you or anything like that ,I'm here to learn and offer >> what support I can >> When I post from my inbox I have some links in my sig tag if they are >> unacceptable please just let me know and I'll use a different >> signature >> thank you >> Heidi >> > > > > > ------------------------------------ > > Welcome to LBDcaregivers. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2008 Report Share Posted October 6, 2008 Hi Heidi, Welcome to the group and kudos to you for being such a great friend and wanting to learn about this disease. It's great Sherry has such support in her corner. -Holly > >> ----- Original Message ----- > >> > >>> I am a close friend of Sherry's and she has been letting me know how > >>> things are going with her mom so I asked if she thought I could join > >>> the group as well.I am an LPN currently working in pediatric home > >>> care , have had years working in nursing homes both as a certified > >>> aide and as a liscenced nurse.There is a possibility that I my go > >>> back to geriatric nursing in the future and thought it would be a > >>> good thing to be up to date as it were on diseases, etc of the > >>> elderly.For the most part I'll probably be a lurker at least for a > >>> bit,working nights and dealing with fibromyalgia sometimes all I do > >>> is get my emails and skim them til I have time to read,lately I have > >>> had alot of stress in my life so if I focus on others problems maybe > >>> I can calm down a bit too. > >>> So thanks for letting me be apart of this group and please don't let > >>> me being in the medical profession worry you ,I'm not here to > >>> judge,tell on you or anything like that ,I'm here to learn and offer > >>> what support I can > >> > >> > >> ------------------------------------ > >> > >> Welcome to LBDcaregivers. > >> > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2008 Report Share Posted October 6, 2008 Hi Laurie, Welcome to the group. It's a very supportive and informative one so I hope you find comfort here. I'm caring for my Dad who has LBD. It's a tough road but I'm sure your education will definitely aid you in helping your mom. All the best to you and your family. -Holly > > Dear Laurie, I know how heartbreaking it is to see a LO starting to deteriorate like that. All of us in this group have experienced the same concern and pain, so you came to the right place. Here you will find good advice, lots of useful information and many strong shoulders to cry on. > I just lost my husband, a dear companion, to LBD. The road ahead will be difficult. Try to take care of yourself so you can be of help to your Mom. > Welcome to our group! > A big hug, > Raquel > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2008 Report Share Posted October 6, 2008 thank you but Sherry is there for me when I need a friend so its the very least I can do for her,I can be there without knowing anything about the disease but feel I can offer more with some knowledge so I can try to better understand what she is dealing with Heidi Re: new member > Hi Heidi, > Welcome to the group and kudos to you for being such a great friend > and wanting to learn about this disease. It's great Sherry has such > support in her corner. > -Holly > >> >> ----- Original Message ----- >> >> >> >>> I am a close friend of Sherry's and she has been letting me > know how >> >>> things are going with her mom so I asked if she thought I could > join >> >>> the group as well.I am an LPN currently working in pediatric > home >> >>> care , have had years working in nursing homes both as a > certified >> >>> aide and as a liscenced nurse.There is a possibility that I my > go >> >>> back to geriatric nursing in the future and thought it would be > a >> >>> good thing to be up to date as it were on diseases, etc of the >> >>> elderly.For the most part I'll probably be a lurker at least > for a >> >>> bit,working nights and dealing with fibromyalgia sometimes all > I do >> >>> is get my emails and skim them til I have time to read,lately I > have >> >>> had alot of stress in my life so if I focus on others problems > maybe >> >>> I can calm down a bit too. >> >>> So thanks for letting me be apart of this group and please > don't let >> >>> me being in the medical profession worry you ,I'm not here to >> >>> judge,tell on you or anything like that ,I'm here to learn and > offer >> >>> what support I can >> >> >> >> >> >> ------------------------------------ >> >> >> >> Welcome to LBDcaregivers. >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2011 Report Share Posted June 24, 2011 Hi " C " and welcome to Aspires. You might want to consider the following: " Aspergers in Love " by Maxine Aston (a classic) " Life With a Partner or Spouse With Asperger Syndrome: Going over the Edge? Practical Steps to Saving You and Your Relationship " by Kathy Marshak " Asperger Syndrome and Long-Term Relationships " by Stanford " The Complete Guide to Asperger's Syndrome " by Tony Attwood (another classic) " An Asperger Marriage " by Slater- (well recommended) , dx'd with AS in 2007, officially documented in 2010 (I also run my own AS/HFA support/social group in my city) > > Hi " C " > > Your message did not post to the board but was a response to our WELCOME message, so I am reposting it for you. > > Welcome aboard! > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > > Dear fellow aspires, > > > So I'm engaged to a most beautiful woman. I really love her and I mean it when I say I'll do anything for her. That doesn't mean however that I have encountered some difficulty. I don't want to say to many personal stuff but do any of you have any tips for a spouse encountering some difficulty with his beloved woman, who has asperger syndrome? > > > regards, > > C. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2011 Report Share Posted June 24, 2011 Hi C, What kind of problems are you referring to..personal, intimate or relating or temperament issues maybe? You don't need to be ultra specific but a broad idea would be helpful, although I may not be the person most able to help ..maybe a member who is female and AS themselves may be better at answering your query , Hazel married to AS husband TC for 32+ years > Dear fellow aspires, > > > So I'm engaged to a most beautiful woman. I really love her and I mean it when I say I'll do anything for her. That doesn't mean however that I have encountered some difficulty. I don't want to say to many personal stuff but do any of you have any tips for a spouse encountering some difficulty with his beloved woman, who has asperger syndrome?> > > regards,> > C.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2011 Report Share Posted July 3, 2011 Hi Sandy,Welcome! I have attended a recent talk by Rudy Simone, and she stated then that she believes that she is also AS. I think that what she wrote may apply better to men who are either un-dx or in denial, but I know AS men to whom many of these things would not apply, because they trust others to point out where they are not seeing or interpreting the feelings or others correctly, and they take it seriously. You will find some of them here on this list. : c )ASTo: "aspires-relationships " <aspires-relationships >Sent: Saturday, July 2, 2011 7:17 PMSubject: New member Hi Everyone: I'm excited to be joining this group! I have been married for 32 years to a man that who probably has Asperger's. It has only become apparent to me in the last couple of years (just because my familiarity with the diagnosis increased). I've read some books that were helpful, including Going Over the Edge by Kathy J. Marshack, Ph.D., 22 Things a Woman Must Know if She Loves a Man with Asperger's Syndrome by Rudy Simone, and Songs of the Gorilla Nation by Dawn Prince-, Ph.D. I've also read some Temple Grandin books. I consult with someone who works with individuals with ASD and go to many ASD workshops for my job and personal growth. But I still need this type of thing to help me put it all into practice and to keep my perspective on a day-to-day basis. My husband's way of thinking and behaving still seems counterintuitive to me, even though I "get" him much more than anyone else in his life. Anyway, thanks for being here! Sandy Quote Link to comment Share on other sites More sharing options...
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