Guest guest Posted May 16, 2006 Report Share Posted May 16, 2006 I just wanted to take a minute to say welcome! Thanks for the insights you have already given. BUtifulGrace fresabird wrote: I just wanted to introduce myself. I am a KO (thanks for the abrieviation list!) of a ubp/ap mother. I have been NC for 13 years. When I was being treated for PTSD in the early 90's, my psychiatrist said that he thought my mother was " bpd at best " . I was wanting to know if I could " catch " whatever made her so horrible, and he assured me I couldn't, so I let it drop. At the time both he and my therapist had tried to find someone with a background like me, or even a book, but were unsucessful. I recently was searching the web and stumbled across the Nook while googling an author. And I now found these lists. Being able to talk about my mother without shading the truth based on how much I think the person I am talking to can handle, or cringing inside waiting for the inevitable statement about how I reallly should call her, or realizing that if I say my mother is crazy I will be assumed to be also, has been great. I wouldn't wish my nada (love that one) on anyone, but it is very validating to not only know that I am not the only one, but to actually " meet " real people like me. I look forward to meeting you all. I read through a few older posts and found the handwriting discussion very interesting. It looks like I have a lot in common with some of you. My handwriting is horrible, and I can't spell worth a flip. I'm so glad computers came a long in time for the last few years of college! Spell check and printers - lifesavers for me. fresabird Problems? Ask our friendly List Manager for help at @.... SEND HER ANY POSTS THAT CONCERN YOU; DO NOT Respond ON THE GROUP. To order the KO bible " Stop Walking on Eggshells, " call 888-35-SHELL () for your copy. We also refer to “Understanding the Borderline Mother” (Lawson) and “Surviving the Borderline Parent,” (Roth) which you can find at any bookstore. Welcome to the WTO community! From Randi Kreger, Owner BPDCentral, WTO Online Community and author SWOE and the SWOE Workbook. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2006 Report Share Posted October 22, 2006 Hello Mae, and welcome on board to a list that no one wants but needs badly. It is a List of help, support, and a lot of love. Thank you for expressing yourself about your Mother's situation. You will do alright since you already know to seek knowledge and understanding. A lot of that will come through reading other about caregiver's situations. I had an experience similar to you with your mother and medication. A Neurologist prescribed a medication that nearly killed him. I am sure you read my story just a few days ago. There are many on here that have remained after their LO passed away, that can relate some real eye openers about what we newer caregivers are facing. The knowledge they are sharing in having personally experienced it, is of more value than many medically hygienic words that have been sterilized so well that they don't really convey what a knowing caregiver can relay. I'm not saying not to read the Medical work. By all means do. I did, and do, read it. But it sinks in better after I see experiences that bring the Medical words to some understanding. I read medical works quite a lot. Merck's Medical for one, that is printed for Doctors, not the lay-person, as is done on the computer. So I do understand many words, and terms, but it comes across as words with no feeling. Knowing caregivers put the feeling into those words. Once again, welcome, and stay happy, Imogene Caregiver for my True Texas Gentleman husband of 35 years. He has LBD with Parkinsonism. In a message dated 10/22/2006 6:44:05 AM Central Daylight Time, chocmae@... writes: Hello, first post here. Here are some notes about our situation: * My 68-year-old mother was diagnosed with LBD on 10/11. She has been having obvious symptoms for about 3 years, was tested by psychologist 2 years ago, sent back to 'family doctor' for a prescription for Effexor for depression. Ball was then dropped. (argh. Who wouldn't feel depressed with these horrible symptoms?!) * Found new neurologist & new psychologist 3 weeks ago which resulted in [hopefully] a proper diagnosis. * As soon as my father told me dx over the phone, I rushed to Google " LBD " . Hadn't heard of it before, but now feel like some kind of expert. * We had follow-up with the neurologist this week and he gave her Exelon. * My maternal grandmother died with Alzheimer's. * My paternal grandmother exhibits all of the main LBD symptoms quite strongly, but her doctors are disinterested and will only say " dementia " . It took me 1 hour of Internet research to realize that my paternal grandmother has LBD and that they've made her irreversibly worse with certain meds. We're determined that this won't happen to my mother. I've been reading everything you all have been sharing over the past 10 days and I very much appreciate your willingness to do so. ~Mae Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2006 Report Share Posted October 22, 2006 Mae I am sorry you had to find us but glad you did. This is the best support group you will ever find. Not only for the info on LBD but for the support you get when you get overwhelmed. You can rant, rave, cry and laugh with this group and no body will ever think bad of you. Yes I said laugh. There are times when a situation has humor in it. Please feel free to post anytime of day or night. More than likely someone will be on line and will be able to help you or listen to you. We will laugh with you, cry with you, and pray with you as is needed. So WELCOME. Cyber Hugs to you and your family Jacqui in So Florida Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2006 Report Share Posted October 22, 2006 Mae -- welcome to the boards... the place noone wants to be, but grateful anyway... Be sure to check out our Links section: http://health.groups.yahoo.com/group/LBDcaregivers/links There's tons of useful information there... My mom's story (although it needs to be updated) is in the Files section: http://health.groups.yahoo.com/group/LBDcaregivers/files/ Within folder: MEMBER PROFILES Share Your Story And there's a list of books recommended in the Database section: http://health.groups.yahoo.com/group/LBDcaregivers/database PS -- my situation was similar as mom's neurologist said to his Harvard students, " Doctor thinks she has LBD. " ; loving daughter of Maureen of Boston, MA; finally diagnosed with LBD on 2/2006 after also being diagnosed with everything from AD to Vascular Dementia caused by mini strokes to Binswengers...; was victim to rapid decline from Risperidone (or combination of Risperidone with other drugs OR possibly received another " bad drug " when she was observed/tested in a hospital in 10/2005); in a NH since 11/2005. From 4/2006 was on antidepressant Celexa, 20mg (still teary, but not as weepy); from 4/21/06 was on Exelon (a/o 6/28/06 began following the suggested dosage for LBD); as of 7/1 went on ALA (200 mg) and B1. Since mid-July 2006 mom was once again engaged in conversations and we shared laughs during every visit (NARANJA!). Mom became my Guardian Angel on Sept. 30th, 2006 -- she had seizures that last day -- not sure if it was LBD related or something to do w/ kidney failure or UTIs... May mumsie rest in peace... " Shall we dance? One, two, three and? On a bright cloud of music shall we fly? One, two, three and? " Visit the LBDCaregivers board on the web: http://groups.yahoo.com/group/LBDcaregivers/ (See files, suggested links, databases, photos of members, and search previous posts) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2006 Report Share Posted October 22, 2006 Mae, Welcome. If you have been reading for the last 10 days, I hope you have found the " Links " and all the work has done there. I am one of the monitors as well as , so if you have problems, one of us should be able to help. There are a lot of good caregivers here, with tons of experience. As you can see by my signature, Mom died 4 years ago. But she couldn't take drugs. She has High BL P pills and thyroid pills. During her last year or so I had her on an antianxiety pill. But it was a fraction of the pill 2 or 4 times a day. She did fine with that. THe rest of the time I just worked with the dementia. SHe didn't have a lot of the Parkinson sypmtoms so we were lucky there. But the two drugs from the PD and LBD don't work together anyway. Hugs, and welcome, 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2006 Report Share Posted October 22, 2006 Welcome Mae, I am fairly new to the group also. I am the caretaker of my 79 yo Mom with LBD. It has become the high point of my day to communicate with my " friends " online in this group. I know you will feel the same way. Welcome!!! As far as the Ativan, I see it has already been answered quite clearly for you. Again, welcome and we wish we didn't have to meet like this, but it's the best place to be under these circumstances. My best, Carol Incognito > > Hello, first post here. Here are some notes about our situation: > > * My 68-year-old mother was diagnosed with LBD on 10/11. She has > been having obvious symptoms for about 3 years, was tested by > psychologist 2 years ago, sent back to 'family doctor' for a > prescription for Effexor for depression. Ball was then dropped. (argh. > Who wouldn't feel depressed with these horrible symptoms?!) > * Found new neurologist & new psychologist 3 weeks ago which resulted > in [hopefully] a proper diagnosis. > * As soon as my father told me dx over the phone, I rushed to Google > " LBD " . Hadn't heard of it before, but now feel like some kind of > expert. > * We had follow-up with the neurologist this week and he gave her > Exelon. > > > * My maternal grandmother died with Alzheimer's. > * My paternal grandmother exhibits all of the main LBD symptoms quite > strongly, but her doctors are disinterested and will only say > " dementia " . It took me 1 hour of Internet research to realize that my > paternal grandmother has LBD and that they've made her irreversibly > worse with certain meds. We're determined that this won't happen to my > mother. > > I've been reading everything you all have been sharing over the past 10 > days and I very much appreciate your willingness to do so. > > ~Mae > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2006 Report Share Posted October 22, 2006 Welcome Mae. I'm so sorry you have had to seek us out but happy that you have found us. You will find a lot of support here from everyone. Leah > > Hello, first post here. Here are some notes about our situation: > > * My 68-year-old mother was diagnosed with LBD on 10/11. She has > been having obvious symptoms for about 3 years, was tested by > psychologist 2 years ago, sent back to 'family doctor' for a > prescription for Effexor for depression. Ball was then dropped. (argh. > Who wouldn't feel depressed with these horrible symptoms?!) > * Found new neurologist & new psychologist 3 weeks ago which resulted > in [hopefully] a proper diagnosis. > * As soon as my father told me dx over the phone, I rushed to Google > " LBD " . Hadn't heard of it before, but now feel like some kind of > expert. > * We had follow-up with the neurologist this week and he gave her > Exelon. > > > * My maternal grandmother died with Alzheimer's. > * My paternal grandmother exhibits all of the main LBD symptoms quite > strongly, but her doctors are disinterested and will only say > " dementia " . It took me 1 hour of Internet research to realize that my > paternal grandmother has LBD and that they've made her irreversibly > worse with certain meds. We're determined that this won't happen to my > mother. > > I've been reading everything you all have been sharing over the past 10 > days and I very much appreciate your willingness to do so. > > ~Mae > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2006 Report Share Posted October 23, 2006 mae, welcome to our family and i am sorry i am a little late but i havent been able to do my emails for a few days. after reading many have already told you quite a bit, so i wont add very much, first of all welcome to our family, although i am sorry you had to look us up. we are here for you and there is almost always someone responding to emails 24 hours a day as our membership is scattered not only over north america but the world too, italy , australia, newqzealand just to name a few. feel free to vent, cry, scream, share funniers, ask questions, laugh whatever you need to do to help you on the rollercoaster ride of lbd. HOWEVER, there is one rule that you should learn first, in order to be a good caregiver, you have to take good care of yourself first. because i you dont, it will catch up iwht you , then who is going to take care of your lo ( loved one( if you read back thru the posts, i was hosp last year for 5 weeks before my father died for a double kidney infectoon, intestinal blockage and then a staff infection. i have health issues anyway but overrode my little warning devices and also jacqui from puget sound had the awful flesh eating baceteria that she was very very ill for months. so take it from those of us thickheaded ones that learned it the hard way, hugs, sharon m ---- chocmae wrote: Hello, first post here. Here are some notes about our situation: * My 68-year-old mother was diagnosed with LBD on 10/11. She has been having obvious symptoms for about 3 years, was tested by psychologist 2 years ago, sent back to 'family doctor' for a prescription for Effexor for depression. Ball was then dropped. (argh. Who wouldn't feel depressed with these horrible symptoms?!) * Found new neurologist & new psychologist 3 weeks ago which resulted in [hopefully] a proper diagnosis. * As soon as my father told me dx over the phone, I rushed to Google " LBD " . Hadn't heard of it before, but now feel like some kind of expert. * We had follow-up with the neurologist this week and he gave her Exelon. * My maternal grandmother died with Alzheimer's. * My paternal grandmother exhibits all of the main LBD symptoms quite strongly, but her doctors are disinterested and will only say " dementia " . It took me 1 hour of Internet research to realize that my paternal grandmother has LBD and that they've made her irreversibly worse with certain meds. We're determined that this won't happen to my mother. I've been reading everything you all have been sharing over the past 10 days and I very much appreciate your willingness to do so. ~Mae Quote Link to comment Share on other sites More sharing options...
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