Guest guest Posted April 25, 2007 Report Share Posted April 25, 2007 --- Hi thank you for sharing that. I am new to the forum. My mother has just been diagnosed with LBD. She was first diagnosed with Parkinsonism and after being treated with medication (which had an adverse affect, she started to hallucinate and was very angry, confused and upset)I was informed by the Neurolgist (by telephone) that my mother had LBD. I was shocked and upset and couldn't believe that from the adverse affect the medication created that she could be diagnosed LBD. I was (and in some ways still am) in denial of this diagnosis as she is well without the medication. She has lost the ability to understand what she reads, unable to knit any more and cannot do jigsaw puzzles but apart from that she is well. I am scared for the future for her and unsure of what it holds. I visit my mum each day, three times a day, before work, lunch hours and after work and am scared each time I visit her as to what I will find, whether she has gone done hill, but so far so good. I can't believe that from my mother being unsteady on her feet the diagnosis is LBD. She is Japanese and so English is not her first language and she learnt to read and write through her children. Her English has never been perfect. If she had been having hallucinations without the tablets then I would 100% believe the diagnosis. I know something is wrong with her due as she is unable to comprehend what she reads etc but could it be something else other than LBD? Everyone I read about on this forum seemed to understand and accept that their diagnosis is right because they saw the symptoms. Why can't I accept the diagnosis? It is hard, like you say, to see or know that someone you love going through what they will go through and there is nothing you can do to take it away. Thanks for listening. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2007 Report Share Posted April 25, 2007 , Rapid changes in LBD, in my experience came mostly with nasty antipsychotic drugs. Sometimes a UTI or constipation can cause a change for the worse, but that reverses when the UTI or Constipation problem is taken care of. For my mom, the worst changes were result of bad medicines. We didn't know it at the time, but I believe now, my mom would have been better off, without 4 years of the parkinson's meds. At the time, we thought that they were helping. With my 20/20 hindsite, the only drug that actually made things better for my mom was aricept. I believe my mom's halucinations related somewhat to the Sinemet ( levo-dopa). When the doctor had her withdraw from that, the halucinations receded. The LBD decline, short of a hospital stay with nasty antipsychotic drugs given, is kind of like a gentle roller coaster ride, ups and down, but over time the trend is down the slippery slope. The dementia gets worse, but unlike AD, my LBD my mom knew her family to the last. She passed at home, in her favorite chair. Dann Larby wrote: --- Hi thank you for sharing that. I am new to the forum. My mother has just been diagnosed with LBD. She was first diagnosed with Parkinsonism and after being treated with medication (which had an adverse affect, she started to hallucinate and was very angry, confused and upset)I was informed by the Neurolgist (by telephone) that my mother had LBD. I was shocked and upset and couldn't believe that from the adverse affect the medication created that she could be diagnosed LBD. I was (and in some ways still am) in denial of this diagnosis as she is well without the medication. She has lost the ability to understand what she reads, unable to knit any more and cannot do jigsaw puzzles but apart from that she is well. I am scared for the future for her and unsure of what it holds. I visit my mum each day, three times a day, before work, lunch hours and after work and am scared each time I visit her as to what I will find, whether she has gone done hill, but so far so good. I can't believe that from my mother being unsteady on her feet the diagnosis is LBD. She is Japanese and so English is not her first language and she learnt to read and write through her children. Her English has never been perfect. If she had been having hallucinations without the tablets then I would 100% believe the diagnosis. I know something is wrong with her due as she is unable to comprehend what she reads etc but could it be something else other than LBD? Everyone I read about on this forum seemed to understand and accept that their diagnosis is right because they saw the symptoms. Why can't I accept the diagnosis? It is hard, like you say, to see or know that someone you love going through what they will go through and there is nothing you can do to take it away. Thanks for listening. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2007 Report Share Posted April 26, 2007 Hi Imogene, Glad you are back. You are always missed. And I know what you mean when you say sometimes you need to take a break and get some other stuff done. Hope all is well at your house. 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2007 Report Share Posted April 26, 2007 Good to see you here again Imogene! I went to the " Files " in the Phases of LBD to see where Jim might be after you mentioned that Don is probably in Phase III and Jim seems like he is now in the beginning of Phase IV. He started swallowing issues the end of last year and is on liquid thickener. He is starting to cough a little with some foods, but I am keeping him on mechanical soft foods for as long as possible, because as long as he can see the food, he will not touch Pureed, he would rather starve. He refuses to eat it. I bring cans of Ensure to the nh to make sure he gets enough nutrients if he does not eat well. He is starting to get UTIs more frequently too. I don't know if it's from the nh hygene and not changing him often enough, but I did request for them to put a chart in Jim's closet and mark his changing times daily, so I can see when he was last changed. They seem to be on a good schedule of changing times now since I have requested that. It may be that he is progressing into the disease and UTIs will happen more frequently with him. Overall, he looks good and still has a spark that shines through. He still can do weight bearing and transferes from standing to sitting with assistance and can get in the car again. Where he finds his strength I don't know. I am in awe of him to keep pulling through. He was so weak and sick in Dec/Jan. I hope he can overcome this UTI and that it doesn't come back stronger and worse like it happened last time. I pray the antibiotics get it all. This is his last week on Monday of the antibiotics. I have read where a low doseage of antibiotics can be given daily to help keep UTIs under control. Have you heard of this? I read it on a website about UTIs. Would taking a low dosage build up an immunity to the antibiotic,so that it would not be effective any longer? I am thinking of requesting a low dosage antibiotic daily for Jim. What do you think, is it worth a try? Anyway, just wanted to say good to see you. Hope you are well, I know you are busy..........Hugs, Jan Iward27663@... wrote: Hello everyone. I have just returned after a couple of weeks off, more or less. I have to take a rest from the List from time to time to catch up on things around here. Hope I haven't missed anything I need know. Like everyone else I have learned everything from the list to which we belong. This list has become a great friend to me. I appreciate that. A big welcome to everyone new to the List that I have not addressed. You will find the same caring help that I have received. No question is too dumb to ask. And, anything shared is greatly appreciated by all. This is how we learn. Most of you know my story, but for the benefit of you new ones here, a short fill in is in order. My darling husband Don, 73, had been having problems for a long time of which we tried to cope. We did not suspect such a devastating diagnosis. He has had two open heart surgeries, and I knew some problems can occur from them. It was years before he was first diagnosed with Alzheimer's in 2005, and then LBD in early 2006. A kind friend, Ruth, gave me the AD List to join. I went to work looking for everything I could find on Dementia. Geri Hall diagnosed LBD before any doctor did, and suggested I join this List. I love her very much, and trust her advise very much so. She is retired from over thirty years in this business of Dementia, and teaching, but is still working in other areas where her expertise is needed. She is a great lady. I found a new Geriatric/Psychiatrist. He is the head Doctor in a teaching hospital. We Love him very much. At first I didn't say a word about LBD. But, the first time he tested my husband, along with using the notes, (that I had also given the first doctor), he diagnosed LBD. My sweetheart is gradually going downhill. It breaks my heart. Of the symptoms listed on our phases of LBD he now displays most of the symptoms in Phase III. Lift your head and see the sunshine. Find things that are funny. Play. I try hard not to develop a doom and gloom attitude, because it doesn't help either of us. We talk openly about his LBD, as we talk about everything. We still have a lot of love and joy to share. Love a bunch to all of you. Imogene Caregiver for my True Texas Gentleman husband of 36 years. He has LBD with Parkinsonism ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2007 Report Share Posted April 26, 2007 Bless your heart, Donna. I do have to get off again. I just can't handle what I have going on. Love so much dear one, Imogene In a message dated 4/26/2007 1:38:12 AM Central Daylight Time, twomido@... writes: Hi Imogene, Glad you are back. You are always missed. And I know what you mean when you say sometimes you need to take a break and get some other stuff done. Hope all is well at your house. 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. ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2007 Report Share Posted April 26, 2007 Dear Jan, I have been thinking about you and Jim, and wanting to hear from you. I will have to talk with you later. For now I have to go on no mail again as I am swamped. Love a bunch Imogene In a message dated 4/26/2007 3:42:28 AM Central Daylight Time, janetcolello@... writes: Good to see you here again Imogene! I went to the " Files " in the Phases of LBD to see where Jim might be after you mentioned that Don is probably in Phase III and Jim seems like he is now in the beginning of Phase IV. He started swallowing issues the end of last year and is on liquid thickener. He is starting to cough a little with some foods, but I am keeping him on mechanical soft foods for as long as possible, because as long as he can see the food, he will not touch Pureed, he would rather starve. He refuses to eat it. I bring cans of Ensure to the nh to make sure he gets enough nutrients if he does not eat well. He is starting to get UTIs more frequently too. I don't know if it's from the nh hygene and not changing him often enough, but I did request for them to put a chart in Jim's closet and mark his changing times daily, so I can see when he was last changed. They seem to be on a good schedule of changing times now since I have requested that. It may be that he is progressing into the disease and UTIs will happen more frequently with him. Overall, he looks good and still has a spark that shines through. He still can do weight bearing and transferes from standing to sitting with assistance and can get in the car again. Where he finds his strength I don't know. I am in awe of him to keep pulling through. He was so weak and sick in Dec/Jan. I hope he can overcome this UTI and that it doesn't come back stronger and worse like it happened last time. I pray the antibiotics get it all. This is his last week on Monday of the antibiotics. I have read where a low doseage of antibiotics can be given daily to help keep UTIs under control. Have you heard of this? I read it on a website about UTIs. Would taking a low dosage build up an immunity to the antibiotic,so that it would not be effective any longer? I am thinking of requesting a low dosage antibiotic daily for Jim. What do you think, is it worth a try? Anyway, just wanted to say good to see you. Hope you are well, I know you are busy..........Hugs, Jan Iward27663@... wrote: Hello everyone. I have just returned after a couple of weeks off, more or less. I have to take a rest from the List from time to time to catch up on things around here. Hope I haven't missed anything I need know. Like everyone else I have learned everything from the list to which we belong. This list has become a great friend to me. I appreciate that. A big welcome to everyone new to the List that I have not addressed. You will find the same caring help that I have received. No question is too dumb to ask. And, anything shared is greatly appreciated by all. This is how we learn. Most of you know my story, but for the benefit of you new ones here, a short fill in is in order. My darling husband Don, 73, had been having problems for a long time of which we tried to cope. We did not suspect such a devastating diagnosis. He has had two open heart surgeries, and I knew some problems can occur from them. It was years before he was first diagnosed with Alzheimer's in 2005, and then LBD in early 2006. A kind friend, Ruth, gave me the AD List to join. I went to work looking for everything I could find on Dementia. Geri Hall diagnosed LBD before any doctor did, and suggested I join this List. I love her very much, and trust her advise very much so. She is retired from over thirty years in this business of Dementia, and teaching, but is still working in other areas where her expertise is needed. She is a great lady. I found a new Geriatric/Psychiatrist. He is the head Doctor in a teaching hospital. We Love him very much. At first I didn't say a word about LBD. But, the first time he tested my husband, along with using the notes, (that I had also given the first doctor), he diagnosed LBD. My sweetheart is gradually going downhill. It breaks my heart. Of the symptoms listed on our phases of LBD he now displays most of the symptoms in Phase III. Lift your head and see the sunshine. Find things that are funny. Play. I try hard not to develop a doom and gloom attitude, because it doesn't help either of us. We talk openly about his LBD, as we talk about everything. We still have a lot of love and joy to share. Love a bunch to all of you. Imogene Caregiver for my True Texas Gentleman husband of 36 years. He has LBD with Parkinsonism ************************************** See what's free at http://www.aol.com. [Non-text portions of this message have been removed] Welcome to LBDcaregivers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2007 Report Share Posted April 26, 2007 , I understand what you are going through--visiting your mum 3x a day. I try to do everything I can to make things better. And I certainly can understand why you would question the diagnosis. I try to take one day at a time because they change frequently. Many times there will be days that are not so good and then--all of a sudden--you'll see how bright and happy she'll be. In understanding, Norma " Larby " <l.larby@... .uk> To Sent by: LBDcaregivers LBDcaregivers@yah cc oogroups.com Subject Re: A big hello 04/25/2007 06:23 PM Please respond to LBDcaregivers@yah oogroups.com --- Hi thank you for sharing that. I am new to the forum. My mother has just been diagnosed with LBD. She was first diagnosed with Parkinsonism and after being treated with medication (which had an adverse affect, she started to hallucinate and was very angry, confused and upset)I was informed by the Neurolgist (by telephone) that my mother had LBD. I was shocked and upset and couldn't believe that from the adverse affect the medication created that she could be diagnosed LBD. I was (and in some ways still am) in denial of this diagnosis as she is well without the medication. She has lost the ability to understand what she reads, unable to knit any more and cannot do jigsaw puzzles but apart from that she is well. I am scared for the future for her and unsure of what it holds. I visit my mum each day, three times a day, before work, lunch hours and after work and am scared each time I visit her as to what I will find, whether she has gone done hill, but so far so good. I can't believe that from my mother being unsteady on her feet the diagnosis is LBD. She is Japanese and so English is not her first language and she learnt to read and write through her children. Her English has never been perfect. If she had been having hallucinations without the tablets then I would 100% believe the diagnosis. I know something is wrong with her due as she is unable to comprehend what she reads etc but could it be something else other than LBD? Everyone I read about on this forum seemed to understand and accept that their diagnosis is right because they saw the symptoms. Why can't I accept the diagnosis? It is hard, like you say, to see or know that someone you love going through what they will go through and there is nothing you can do to take it away. Thanks for listening. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2007 Report Share Posted April 26, 2007 > > Hi Dann Thanks for responding. I am sorry to hear that your mother has now passed on. When did you first realise something was wrong with your mum? Did she have hallucinations before she was on the medication? Did she decline rapidly. Hindsight is a wonderful thing, but you can only do what you think is right at the time. Take care. L Quote Link to comment Share on other sites More sharing options...
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