Guest guest Posted August 29, 2005 Report Share Posted August 29, 2005 i am new to this, however, reading the messages posted, i can tell there is a wealth of knowledge here.........much more that i got from the doctor! phyllis Janel Hafer wrote: My mother was diagnosed with LBD last week and my sister and I would like to read others accounts of the progress of this disease. My mother is 88 and has been in a nursing home for 3 years with classic symptoms but we never heard of this disease until last week. She's been in a wheelchair for 3 years after about 2 years of constant falls. It is such a relief to her and to us to know that the hallucinations are a result of this disease and not aimed at all of us. My father is 91 and very devoted - he gets the brunt of the stories aimed at thim. He also lives at the same home so that he can be near her even though he is still very self suffiecient. Thanks so much for any insight you can give us. She is currently at the stage where it is almost impossible for her to feed herself. Janel Michigan __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2005 Report Share Posted August 30, 2005 Welcome, Janel. You will find a lot of comfort in knowing the symptoms of LBD. It removes some anger when you can blame the disease for the hurt you have felt. This is a nice group of people. Just reading their experiences makes you nod your head and say... " I've been there or I am there. " Myrna in Missouri Husband age 70 Diagnosed AD 1997 Diagnosed LBD 2003 " She's been in a wheelchair for 3 years after about 2 years of constant falls. It is such a relief to her and to us to know that the hallucinations are a result of this disease and not aimed at all of us. My father is 91 and very devoted - he gets the brunt of the stories aimed at thim. He also lives at the same home so that he can be near her even though he is still very self suffiecient. Janel Michigan " __________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2005 Report Share Posted August 30, 2005 Welcome Janel Go to LewyBodyJournal.org to read one families experience w/ LBD. THere are also shorter " stories " on this site. Where in Michigan? I'm from Canton. Blessings, Lori > My mother was diagnosed with LBD last week and my sister and I would like to read others accounts of the progress of this disease. My mother is 88 and has been in a nursing home for 3 years with classic symptoms but we never heard of this disease until last week. She's been in a wheelchair for 3 years after about 2 years of constant falls. It is such a relief to her and to us to know that the hallucinations are a result of this disease and not aimed at all of us. My father is 91 and very devoted - he gets the brunt of the stories aimed at thim. He also lives at the same home so that he can be near her even though he is still very self suffiecient. > > Thanks so much for any insight you can give us. She is currently at the stage where it is almost impossible for her to feed herself. > > Janel > Michigan > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2005 Report Share Posted August 30, 2005 hello! We just found out 2 weeks ago that my dad, 85 years old, has been diagnosed with LBD. He had been diag. with alzh. for 3 years and I just knew that he did not have all the symptons to go along with that disease. What he had I just could not figure out. Finally, we took him to a neurologist and sure enough he said LBD. I had never heard of it before but I am learning quickly. My mom is still alive, 79 years old and in pretty good health and is able to take care of him so far. I just don't think she can do it and we need to get help. The neurologist put him on a 2 wk trial of trazidone and it helped with the hallucinations but his walking worsened by the day. He was still able to walk but very very little steps and slow. So we stopped the med. on Saturday. We are picking up a new prescription called Seroquel. If anyone has been experience with this med., would you please let me know and if side effects as well. I love reading these e-mails. It helps me so much. I pass them on to my mom and we are trying to deal with this disease the best we can. I wish there was a support group in our area but I was told there is not at this time. Maybe that will be my next step to start one - I am so very close to my dad and I want to do evreything we can for him. Laurie South Bend, IN ladpr6 wrote: Welcome Janel Go to LewyBodyJournal.org to read one families experience w/ LBD. THere are also shorter " stories " on this site. Where in Michigan? I'm from Canton. Blessings, Lori > My mother was diagnosed with LBD last week and my sister and I would like to read others accounts of the progress of this disease. My mother is 88 and has been in a nursing home for 3 years with classic symptoms but we never heard of this disease until last week. She's been in a wheelchair for 3 years after about 2 years of constant falls. It is such a relief to her and to us to know that the hallucinations are a result of this disease and not aimed at all of us. My father is 91 and very devoted - he gets the brunt of the stories aimed at thim. He also lives at the same home so that he can be near her even though he is still very self suffiecient. > > Thanks so much for any insight you can give us. She is currently at the stage where it is almost impossible for her to feed herself. > > Janel > Michigan > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2005 Report Share Posted August 30, 2005 Hi Laurie- I think you will come to appreciate our support group just as I have. You are already on the right track asking about Seroquel. My Dad had a med change he was given Neurotin for pain. After a two days he was really hallucinating. Awake all night talking. I gave hime Seroquel for anxiety and it knocked him out for 20 hours. Finally the Neurotin and the Seroquel cleared his system. He is off the Neurtin. However, I stilll give him an occasional Seroquel. I cut a 25 mg. in half. If that does not work in an hour, I give him the other half. This seems to work well for him. You have to go slow and cautiously with meds. I have done just what you do, ask the group before givning a new med. I have even asked about cough medicine. Glad to have you aboard. Gerry Wilmington, Delaware Re: Re: One More Diagnosis hello! We just found out 2 weeks ago that my dad, 85 years old, has been diagnosed with LBD. He had been diag. with alzh. for 3 years and I just knew that he did not have all the symptons to go along with that disease. What he had I just could not figure out. Finally, we took him to a neurologist and sure enough he said LBD. I had never heard of it before but I am learning quickly. My mom is still alive, 79 years old and in pretty good health and is able to take care of him so far. I just don't think she can do it and we need to get help. The neurologist put him on a 2 wk trial of trazidone and it helped with the hallucinations but his walking worsened by the day. He was still able to walk but very very little steps and slow. So we stopped the med. on Saturday. We are picking up a new prescription called Seroquel. If anyone has been experience with this med., would you please let me know and if side effects as well. I love reading these e-mails. It helps me so much. I pass them on to my mom and we are trying to deal with this disease the best we can. I wish there was a support group in our area but I was told there is not at this time. Maybe that will be my next step to start one - I am so very close to my dad and I want to do evreything we can for him. Laurie South Bend, IN ladpr6 wrote: Welcome Janel Go to LewyBodyJournal.org to read one families experience w/ LBD. THere are also shorter " stories " on this site. Where in Michigan? I'm from Canton. Blessings, Lori > My mother was diagnosed with LBD last week and my sister and I would like to read others accounts of the progress of this disease. My mother is 88 and has been in a nursing home for 3 years with classic symptoms but we never heard of this disease until last week. She's been in a wheelchair for 3 years after about 2 years of constant falls. It is such a relief to her and to us to know that the hallucinations are a result of this disease and not aimed at all of us. My father is 91 and very devoted - he gets the brunt of the stories aimed at thim. He also lives at the same home so that he can be near her even though he is still very self suffiecient. > > Thanks so much for any insight you can give us. She is currently at the stage where it is almost impossible for her to feed herself. > > Janel > Michigan > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
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