Guest guest Posted April 14, 2006 Report Share Posted April 14, 2006 Welcome Amy, One of the first places I would suggest you go is to the address after my name. It is the LBDA site and has lots of info all in one place. I am sure all the people here will be supportive to you. Lots of good people here. One of the first questions often asked is what meds is she on? It is so important to have the right meds. Hope you keep with us or let me know if there are any problems. Donna R Do you want to read more about Lewy Body? You can also read the Thistle, the LBD Newsletter. Just click on: http://www.lewybodydementia.org new member intro Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2006 Report Share Posted April 14, 2006 Welcome to the board, Amy. But I'm sorry that you have to be here... You've taken the first step - and congrats for making the correct one. You will find tons of answers to your questions on this board. You can easily type in a word that you have a question about in the search area and find tons of answers in one quick step... Or pose your questions and we'll do our best to answer them for you.. Be sure to take the time to read the database & files on this board. And visit lbda.org for even more useful info. What meds is your mom on now? ; loving daughter of Maureen of Boston, MA; finally diagnosed with LBD on 2/06 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 10/05); in a NH since 11/05. Update: on antidepressant Celexa, 20mg (still teary, but not as weepy) > > Greetings everyone. My name is Amy H. and my mom was DX with LBD this > week. She begin having problems in 2002-2003 with remembering things > (purse, glasses, things we told her), she was repeating things a lot > also. Her symptoms came on so fast...she begin to be totally > delusional, seeing and hearing things that had not really happened, > totally paranoid too. She was and is very concerned with time and > money...I really feel like she is slipping through my fingers like > sand. My dad is her primary caregiver but as I am the only child, I > am also in the caregiver position. My mom is 64 years old. > > Thank you so much for letting me join this group. I am desperate for > information. > > Amy H. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2006 Report Share Posted April 14, 2006 Hi Amy I can sense your sadness, as you stated your mom is slipping through your fingers like sand. I know the feeling. I was in almost your exact place a few months back. I am an only child, but my dad passed away in 1991. So all the caregiving has been on me alone. I do have a husband and great grown kids, so I am not totally alone. It is just the responsibility of making the final decisions in on me. Amy, one of the best things I ever did was join this group and read the post almost daily. I learned more than a lot of doctors knew about LBD. Ask questions and listen and learn. Be cautious with drugs. And know that we are all here for you. No question is too small to ask. One of us has probably already been through it. Welcome aboard. Fasten your seat belt. And be will go to through this together. Dena So CA Mother (83) End stages LBD, currently taking Cipro for a UTI. No other drugs. Was on Aricept, Namenda, Risperdal, Clonzapam, Prozac --- mom2katiegarland wrote: > Greetings everyone. My name is Amy H. and my mom was > DX with LBD this > week. She begin having problems in 2002-2003 with > remembering things > (purse, glasses, things we told her), she was > repeating things a lot > also. Her symptoms came on so fast...she begin to be > totally > delusional, seeing and hearing things that had not > really happened, > totally paranoid too. She was and is very concerned > with time and > money...I really feel like she is slipping through > my fingers like > sand. My dad is her primary caregiver but as I am > the only child, I > am also in the caregiver position. My mom is 64 > years old. > > Thank you so much for letting me join this group. I > am desperate for > information. > > Amy H. > > > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2006 Report Share Posted April 14, 2006 Amy: Welcome to the club no one wanted to join. You will receive a lot of information here. I hope you have gone to the webpage as it is constantly being updated. We are here for you and understand. Myrna (68) in Missouri Caregiver for Husband Jerry (70) Diagnosed AD 1997, LBD 2004 new member intro > Greetings everyone. My name is Amy H. and my mom was DX with LBD this > week. She begin having problems in 2002-2003 with remembering things > (purse, glasses, things we told her), she was repeating things a lot > also. Her symptoms came on so fast...she begin to be totally > delusional, seeing and hearing things that had not really happened, > totally paranoid too. She was and is very concerned with time and > money...I really feel like she is slipping through my fingers like > sand. My dad is her primary caregiver but as I am the only child, I > am also in the caregiver position. My mom is 64 years old. > > Thank you so much for letting me join this group. I am desperate for > information. > > Amy H. > > > > > > > > > Welcome to LBDcaregivers. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2006 Report Share Posted April 14, 2006 Amy H. Welcome with a warm heart. We all know how you feel, and wish you didn't have to be here for the reason that you are. I can tell you up front that Geri Hall is our real mentor, as she has been in the business since 1978. She has a Ph.D. and all kinds of other credentials, yet, she is so loving and respectful of all of us that you quickly know you can rely on her to help. You have no idea how much this List, and Geri, has helped me. I am fairly new to this List, but I love them all, and Like you, I am thankful to be here. You will learn like you never thought possible. Just about the time I think there is no where else to learn on the disease or symptoms, someone sends in another site to look at. Just know you are not alone in this terrible time. And, it is bad. But, you have a lot of love and understanding right here. Imogene Caregiver for my True Texas Gentleman husband of 35 years. He has AD and possibly LBD, is Taking Aricept and Risperdal. Age 72 in May. In a message dated 4/14/2006 5:48:44 AM Central Daylight Time, 4pairsofchopsticks@... writes: Greetings everyone. My name is Amy H. and my mom was DX with LBD this week. She begin having problems in 2002-2003 with remembering things (purse, glasses, things we told her), she was repeating things a lot also. Her symptoms came on so fast...she begin to be totally delusional, seeing and hearing things that had not really happened, totally paranoid too. She was and is very concerned with time and money...I really feel like she is slipping through my fingers like sand. My dad is her primary caregiver but as I am the only child, I am also in the caregiver position. My mom is 64 years old. Thank you so much for letting me join this group. I am desperate for information. Amy H. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2006 Report Share Posted April 14, 2006 Hi Amy. Welcome to the group. I'm pretty new here too. I joined in February this year when my dad was diagnosed. I guess none of us want to need to be here, but it's a good place to be if you DO need to be. There's loads of info and it's a great place to sound off to people who understand what you're on about. [um .... well, mostly they understand what you're on about .... though sometimes the english to american translation breaks down and we get in a muddle ... there's a helpful glossary somewhere in the archives ] Áine > > Greetings everyone. My name is Amy H. and my mom was DX with LBD this > week. She begin having problems in 2002-2003 with remembering things > (purse, glasses, things we told her), she was repeating things a lot > also. Her symptoms came on so fast...she begin to be totally > delusional, seeing and hearing things that had not really happened, > totally paranoid too. She was and is very concerned with time and > money...I really feel like she is slipping through my fingers like > sand. My dad is her primary caregiver but as I am the only child, I > am also in the caregiver position. My mom is 64 years old. > > Thank you so much for letting me join this group. I am desperate for > information. > > Amy H. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2006 Report Share Posted April 14, 2006 We sure do love you, Dirk. Imogene In a message dated 4/14/2006 10:32:58 PM Central Daylight Time, balivehappy@... writes: Welcome Amy!! You have come to the right place. These people on this board are truly awesome!! I am not a caregiver but a person with LBD. As your questions come in I will try to give you input from a patients perspective when appropriate. Dirk Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2006 Report Share Posted April 14, 2006 Boy, Amy H and Amy H, Do one of you have a middle name or initial we can use or a location. So far I have been able to use last initials even with lots of the same name. But you two could get confusing. Anything would help. Donna R Do you want to read more about Lewy Body? You can also read the Thistle, the LBD Newsletter. Just click on: http://www.lewybodydementia.org RE: new member intro Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2006 Report Share Posted April 14, 2006 Dirk, Do you mind sharing what part of the country you are living in? Just generally, like which state? Thanks Donna R Do you want to read more about Lewy Body? You can also read the Thistle, the LBD Newsletter. Just click on: http://www.lewybodydementia.org Re: new member intro Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2006 Report Share Posted April 17, 2006 Thanks Imogene Ilove Y'all Dirk Iward27663@... wrote: We sure do love you, Dirk. Imogene In a message dated 4/14/2006 10:32:58 PM Central Daylight Time, balivehappy@... writes: Welcome Amy!! You have come to the right place. These people on this board are truly awesome!! I am not a caregiver but a person with LBD. As your questions come in I will try to give you input from a patients perspective when appropriate. Dirk Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2006 Report Share Posted April 17, 2006 Hello Amy and welcome to the LBD group. I am so sorry that your Mom is so very young and has to deal with this horrible disease. My thoughts and prayers are with you as you start the journey to LewyVille. Read all you can and come here with your concerns as there are so many wonderful experienced Caregivers in this LBD family, and even LBD patients that belong to this group who can answer your most frightening questions. I wish you the most wonderful Peace on your journey, Stevie Stevie in So. California LO - Mr. B (Uncle) 82 yrs. Lives in my home - 3 yrs. DX Parkinson's 1993 DX LBD 2003 - probably has PDD End stage meds: Hytrin, E.S Tylenol (Hallies have subsided) ...but have started up again. Was on: Sinemet, Seroguel, Elavil, Lasix, Hytrin, Roxinal, Aciphex, Amitriptyline Was given Ativan and Seroquel in NH for 5 days (Jan '06), hasn't been the same since Daily BP usually 68/52 Severe shoulder pain, hip pain, and shortness of breath. Now taking Trilisate Liquid for pain - seems to be working UTI since 4/7 not getting any better - took Bactrim Sleeping most of the day, breathing becoming an issue, asking for oxygen daily. Got a Living Trust when he was still living on his own * * * * * * * Quote Link to comment Share on other sites More sharing options...
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