Guest guest Posted March 11, 2012 Report Share Posted March 11, 2012 I've been lurking for a bit and reading posts. ly, I'm not thrilled to have the qualifications to be on this list. My father, Bill, who is 85 and previously a chemical engineer lives several hundred miles from me with my stepmother, Pat. My dad has LBD. He has had symptoms for several years....drooling, stiffness, worsening balance and increasing falls, severe constipation and mildly slower thinking. He had a long history of wild dreams...to the point that Dad and Pat had slept in separate rooms due to his acting out his dreams. I am a family doctor but try not to practice on any family members but on thinking about his symptoms, I contacted his doc who is a friend of mine and told him what I thought was occurring (LBD). I hoped that I was wrong although he agreed. In March of 2011 Dad called me to tell me very matter of factly that he was having visual hallucinations. A disturbing call to be sure. I went with my dad to a neurologist visit this fall and told the doc what I thought was going on. Unfortunately, that neurologist was not helpful. It was interesting and disturbing to be on the other side of the unhelpful consult. Anyway, he tried low dose sinemet with no discerable improvement but lots of nausea. Dad finally saw a different neurologist last month who correctly diagnosed him with LBD and started him on higher dose sinemet and low dose seroquel. He is VERY unsteady with very frequent falls. Dad was not able to sleep at this point which was very disturbing. The higher dose of sinemet caused nausea and the seroquel caused a bit too much sedation but at least he was sleeping but when I would talk with him things sounded stable. He still has hallucinations but they are not disturbing to him for the most part. He went back to the neurologist this week and apparently complained of side effects and she asked him if the meds were helping. He said no, so apparently she stopped both meds on Thurday. Friday am while at my office seeing patients I got a call from dad that his hand was drawing and numb and that his leg felt numb also. I thought this could be a stroke and told him to go immediately to the er. They dxed a muscle spasm and sent him home after a ct scan was normal. (The thought passed thru my mind...which is worse....LBD vs passing away from a stroke). Yesterday (the next day) I got a very worried call from Pat. Abruptly that morning, Dad had no idea what medications he was taking, could not read (he has continued to read up until now as a major source of pleasure to him), could not watch tv and was unable to figure out to put on a shirt. She and I talked and we restarted the sinemet and seroquel since stopping those immediately preceded this abrupt and severe turn for the worse. By bedtime he was able to follow tv a bit. Today he still cannot read more than a word or two but is able to follow TV. I didn't inquire about exactly what else is there or missing but we did chat on the phone and the conversation seemed fairly normal (the newer normal). This whole process is so disturbing and frustrating. I am worried and know that the future from here is very unpleasant but not wanting to frighten my family but help them be realistic as well. My dad asked me how long people with this live and I told him 10 years. I don't think that's accurate but I don't know how long anyone will live and I didn't want to frighten him. I don't want to practice medicine for my dad but I don't want docs to be stupid either. ARGHHH! Thanks for letting me vent. This is tough. My mother lives about 4 hours in the opposite direction from my father (I live about midway between them). She lives by herself (but my sister lives nearby) and has early signs of dementia but nothing severe yet. She is driving my sister crazy at times. My husband's parents live about 10 hours away in assisted living. His father has severe alzheimer disease and his mother has parkinson disease and severe osteoporosis with compression fractures. She is mentally at about 1/2 speed. I have a 16 year old daughter at home and I practice full time in a stressful profession. Cheryl Fayetteville, AR Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2012 Report Share Posted March 12, 2012 Cheryl: My 87-year-old husband (I am 63) just died of LBD. His very caring and overworked physician of many years did not identify the disease--I did. Another family practitioner also failed to diagnose the real problem. At that point, I asked to see a neurologist who confirmed my own diagnosis from my own research into his symptoms. I had never heard of LBD, but nothing else seemed to fit. The course of my husband's disease began in 2000 with hallucinations while recovering from an illness. For several years, that was his only symptom (he would hallucinate only when he had been ill for at least 2 days). Then in 2007, he began to have serious sleep disturbances where he was up and walking around at night. I was still working at the time and this was extremely stressful due to my losing sleep every single night; however, he was fine during the day. By December of 2008, he was getting more unsteady on his feet and needed a cane. By June of 2009, he could no longer walk very far and needed a wheelchair when out of the house. He had no parkinsonian symptoms at all during the course of the disease. By 2010, he was staying in bed most of the day, although he would occasionally wake up and demand to be taken home or to see his long deceased mother. I would take him for a drive in the car and bring him home and he would recognize his home and be fine after that. I put a potty chair by his bed for urine because he could still walk the short distance to the bathroom, if necessary. During 2011, he left the house only once to visit his doctor. He stayed in bed at least 20 hours every day, although I insisted he get up to eat just to use his leg muscles. In December of 2011, after contracting a stomach virus (vomiting and diarrhea), he passed away less than 24 hours later. When I found him and called 9-1-1, who responded with paramedics who then called the PD, not one responder had heard of LBD, so I educated them. The worst part of this disease is the not knowing. We have no sure meds (NONE of them worked for my husband) and no sure prognosis other than eventual death. The disease progresses differently with each individual. The timeline is unique to each individual. Our neurologist is a wonderful physician who did his best to help. He responded to every query, told me to call him anytime if I had a question, and was quick to prescribe any med he thought might help. Anything I asked for, he jumped to deliver. I think the reason he did that is because there was so little he could do in the final analysis. Physicians want to heal and it must be frustrating when you cannot. Given your father's age, and your description of the progression of his disease, it sounds as though LBD is progressing quickly in his case. I say to that, good! I would never wish my husband back in that prison of a body that no longer served him well. I am happy that the worst part only lasted about 2 years and I was able to take care of him throughout. As a believer, I know where he is and it is a whole lot better than where he was. During the last 3 years of his life, my husband stopped reading the newspaper, which he read every morning before that, and he watched tv less and less. In fact, he became rather intolerant of the noise of television and if I had it on, he would ask me to turn it off. He preferred sitting quietly in his chair or talking to me (asking the same questions over and over). Mostly, he preferred lying or sleeping in his bed in a dimly lit room. As a caregiver, you have to let go of the person that WAS and embrace the person that IS. Your stepmother is now facing that decision because your father is never going to be what he was before and she will have to accept that and relax in the now as much as possible. It is a " settling in " process, I believe, settling in for the duration, however long that is. Didn't intend for such a long response, but I guess that is my " venting " on the issue of this dreadful disease. I will pray for wisdom for your family in the coming days as I prayed for wisdom in my response to the disease during our battle with it on a daily basis. It's kind of like the AA prayer about changing the things you can and accepting the things you cannot change. Blessings, Cassie To: LBDcaregivers From: gilbertcheryl@... Date: Mon, 12 Mar 2012 03:19:13 +0000 Subject: reluctant intro I've been lurking for a bit and reading posts. ly, I'm not thrilled to have the qualifications to be on this list. My father, Bill, who is 85 and previously a chemical engineer lives several hundred miles from me with my stepmother, Pat. My dad has LBD. He has had symptoms for several years....drooling, stiffness, worsening balance and increasing falls, severe constipation and mildly slower thinking. He had a long history of wild dreams...to the point that Dad and Pat had slept in separate rooms due to his acting out his dreams. I am a family doctor but try not to practice on any family members but on thinking about his symptoms, I contacted his doc who is a friend of mine and told him what I thought was occurring (LBD). I hoped that I was wrong although he agreed. In March of 2011 Dad called me to tell me very matter of factly that he was having visual hallucinations. A disturbing call to be sure. I went with my dad to a neurologist visit this fall and told the doc what I thought was going on. Unfortunately, that neurologist was not helpful. It was interesting and disturbing to be on the other side of the unhelpful consult. Anyway, he tried low dose sinemet with no discerable improvement but lots of nausea. Dad finally saw a different neurologist last month who correctly diagnosed him with LBD and started him on higher dose sinemet and low dose seroquel. He is VERY unsteady with very frequent falls. Dad was not able to sleep at this point which was very disturbing. The higher dose of sinemet caused nausea and the seroquel caused a bit too much sedation but at least he was sleeping but when I would talk with him things sounded stable. He still has hallucinations but they are not disturbing to him for the most part. He went back to the neurologist this week and apparently complained of side effects and she asked him if the meds were helping. He said no, so apparently she stopped both meds on Thurday. Friday am while at my office seeing patients I got a call from dad that his hand was drawing and numb and that his leg felt numb also. I thought this could be a stroke and told him to go immediately to the er. They dxed a muscle spasm and sent him home after a ct scan was normal. (The thought passed thru my mind...which is worse....LBD vs passing away from a stroke). Yesterday (the next day) I got a very worried call from Pat. Abruptly that morning, Dad had no idea what medications he was taking, could not read (he has continued to read up until now as a major source of pleasure to him), could not watch tv and was unable to figure out to put on a shirt. She and I talked and we restarted the sinemet and seroquel since stopping those immediately preceded this abrupt and severe turn for the worse. By bedtime he was able to follow tv a bit. Today he still cannot read more than a word or two but is able to follow TV. I didn't inquire about exactly what else is there or missing but we did chat on the phone and the conversation seemed fairly normal (the newer normal). This whole process is so disturbing and frustrating. I am worried and know that the future from here is very unpleasant but not wanting to frighten my family but help them be realistic as well. My dad asked me how long people with this live and I told him 10 years. I don't think that's accurate but I don't know how long anyone will live and I didn't want to frighten him. I don't want to practice medicine for my dad but I don't want docs to be stupid either. ARGHHH! Thanks for letting me vent. This is tough. My mother lives about 4 hours in the opposite direction from my father (I live about midway between them). She lives by herself (but my sister lives nearby) and has early signs of dementia but nothing severe yet. She is driving my sister crazy at times. My husband's parents live about 10 hours away in assisted living. His father has severe alzheimer disease and his mother has parkinson disease and severe osteoporosis with compression fractures. She is mentally at about 1/2 speed. I have a 16 year old daughter at home and I practice full time in a stressful profession. Cheryl Fayetteville, AR Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2012 Report Share Posted March 12, 2012 Cheryl: My 87-year-old husband (I am 63) just died of LBD. His very caring and overworked physician of many years did not identify the disease--I did. Another family practitioner also failed to diagnose the real problem. At that point, I asked to see a neurologist who confirmed my own diagnosis from my own research into his symptoms. I had never heard of LBD, but nothing else seemed to fit. The course of my husband's disease began in 2000 with hallucinations while recovering from an illness. For several years, that was his only symptom (he would hallucinate only when he had been ill for at least 2 days). Then in 2007, he began to have serious sleep disturbances where he was up and walking around at night. I was still working at the time and this was extremely stressful due to my losing sleep every single night; however, he was fine during the day. By December of 2008, he was getting more unsteady on his feet and needed a cane. By June of 2009, he could no longer walk very far and needed a wheelchair when out of the house. He had no parkinsonian symptoms at all during the course of the disease. By 2010, he was staying in bed most of the day, although he would occasionally wake up and demand to be taken home or to see his long deceased mother. I would take him for a drive in the car and bring him home and he would recognize his home and be fine after that. I put a potty chair by his bed for urine because he could still walk the short distance to the bathroom, if necessary. During 2011, he left the house only once to visit his doctor. He stayed in bed at least 20 hours every day, although I insisted he get up to eat just to use his leg muscles. In December of 2011, after contracting a stomach virus (vomiting and diarrhea), he passed away less than 24 hours later. When I found him and called 9-1-1, who responded with paramedics who then called the PD, not one responder had heard of LBD, so I educated them. The worst part of this disease is the not knowing. We have no sure meds (NONE of them worked for my husband) and no sure prognosis other than eventual death. The disease progresses differently with each individual. The timeline is unique to each individual. Our neurologist is a wonderful physician who did his best to help. He responded to every query, told me to call him anytime if I had a question, and was quick to prescribe any med he thought might help. Anything I asked for, he jumped to deliver. I think the reason he did that is because there was so little he could do in the final analysis. Physicians want to heal and it must be frustrating when you cannot. Given your father's age, and your description of the progression of his disease, it sounds as though LBD is progressing quickly in his case. I say to that, good! I would never wish my husband back in that prison of a body that no longer served him well. I am happy that the worst part only lasted about 2 years and I was able to take care of him throughout. As a believer, I know where he is and it is a whole lot better than where he was. During the last 3 years of his life, my husband stopped reading the newspaper, which he read every morning before that, and he watched tv less and less. In fact, he became rather intolerant of the noise of television and if I had it on, he would ask me to turn it off. He preferred sitting quietly in his chair or talking to me (asking the same questions over and over). Mostly, he preferred lying or sleeping in his bed in a dimly lit room. As a caregiver, you have to let go of the person that WAS and embrace the person that IS. Your stepmother is now facing that decision because your father is never going to be what he was before and she will have to accept that and relax in the now as much as possible. It is a " settling in " process, I believe, settling in for the duration, however long that is. Didn't intend for such a long response, but I guess that is my " venting " on the issue of this dreadful disease. I will pray for wisdom for your family in the coming days as I prayed for wisdom in my response to the disease during our battle with it on a daily basis. It's kind of like the AA prayer about changing the things you can and accepting the things you cannot change. Blessings, Cassie To: LBDcaregivers From: gilbertcheryl@... Date: Mon, 12 Mar 2012 03:19:13 +0000 Subject: reluctant intro I've been lurking for a bit and reading posts. ly, I'm not thrilled to have the qualifications to be on this list. My father, Bill, who is 85 and previously a chemical engineer lives several hundred miles from me with my stepmother, Pat. My dad has LBD. He has had symptoms for several years....drooling, stiffness, worsening balance and increasing falls, severe constipation and mildly slower thinking. He had a long history of wild dreams...to the point that Dad and Pat had slept in separate rooms due to his acting out his dreams. I am a family doctor but try not to practice on any family members but on thinking about his symptoms, I contacted his doc who is a friend of mine and told him what I thought was occurring (LBD). I hoped that I was wrong although he agreed. In March of 2011 Dad called me to tell me very matter of factly that he was having visual hallucinations. A disturbing call to be sure. I went with my dad to a neurologist visit this fall and told the doc what I thought was going on. Unfortunately, that neurologist was not helpful. It was interesting and disturbing to be on the other side of the unhelpful consult. Anyway, he tried low dose sinemet with no discerable improvement but lots of nausea. Dad finally saw a different neurologist last month who correctly diagnosed him with LBD and started him on higher dose sinemet and low dose seroquel. He is VERY unsteady with very frequent falls. Dad was not able to sleep at this point which was very disturbing. The higher dose of sinemet caused nausea and the seroquel caused a bit too much sedation but at least he was sleeping but when I would talk with him things sounded stable. He still has hallucinations but they are not disturbing to him for the most part. He went back to the neurologist this week and apparently complained of side effects and she asked him if the meds were helping. He said no, so apparently she stopped both meds on Thurday. Friday am while at my office seeing patients I got a call from dad that his hand was drawing and numb and that his leg felt numb also. I thought this could be a stroke and told him to go immediately to the er. They dxed a muscle spasm and sent him home after a ct scan was normal. (The thought passed thru my mind...which is worse....LBD vs passing away from a stroke). Yesterday (the next day) I got a very worried call from Pat. Abruptly that morning, Dad had no idea what medications he was taking, could not read (he has continued to read up until now as a major source of pleasure to him), could not watch tv and was unable to figure out to put on a shirt. She and I talked and we restarted the sinemet and seroquel since stopping those immediately preceded this abrupt and severe turn for the worse. By bedtime he was able to follow tv a bit. Today he still cannot read more than a word or two but is able to follow TV. I didn't inquire about exactly what else is there or missing but we did chat on the phone and the conversation seemed fairly normal (the newer normal). This whole process is so disturbing and frustrating. I am worried and know that the future from here is very unpleasant but not wanting to frighten my family but help them be realistic as well. My dad asked me how long people with this live and I told him 10 years. I don't think that's accurate but I don't know how long anyone will live and I didn't want to frighten him. I don't want to practice medicine for my dad but I don't want docs to be stupid either. ARGHHH! Thanks for letting me vent. This is tough. My mother lives about 4 hours in the opposite direction from my father (I live about midway between them). She lives by herself (but my sister lives nearby) and has early signs of dementia but nothing severe yet. She is driving my sister crazy at times. My husband's parents live about 10 hours away in assisted living. His father has severe alzheimer disease and his mother has parkinson disease and severe osteoporosis with compression fractures. She is mentally at about 1/2 speed. I have a 16 year old daughter at home and I practice full time in a stressful profession. Cheryl Fayetteville, AR Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2012 Report Share Posted March 12, 2012 Cheryl: My 87-year-old husband (I am 63) just died of LBD. His very caring and overworked physician of many years did not identify the disease--I did. Another family practitioner also failed to diagnose the real problem. At that point, I asked to see a neurologist who confirmed my own diagnosis from my own research into his symptoms. I had never heard of LBD, but nothing else seemed to fit. The course of my husband's disease began in 2000 with hallucinations while recovering from an illness. For several years, that was his only symptom (he would hallucinate only when he had been ill for at least 2 days). Then in 2007, he began to have serious sleep disturbances where he was up and walking around at night. I was still working at the time and this was extremely stressful due to my losing sleep every single night; however, he was fine during the day. By December of 2008, he was getting more unsteady on his feet and needed a cane. By June of 2009, he could no longer walk very far and needed a wheelchair when out of the house. He had no parkinsonian symptoms at all during the course of the disease. By 2010, he was staying in bed most of the day, although he would occasionally wake up and demand to be taken home or to see his long deceased mother. I would take him for a drive in the car and bring him home and he would recognize his home and be fine after that. I put a potty chair by his bed for urine because he could still walk the short distance to the bathroom, if necessary. During 2011, he left the house only once to visit his doctor. He stayed in bed at least 20 hours every day, although I insisted he get up to eat just to use his leg muscles. In December of 2011, after contracting a stomach virus (vomiting and diarrhea), he passed away less than 24 hours later. When I found him and called 9-1-1, who responded with paramedics who then called the PD, not one responder had heard of LBD, so I educated them. The worst part of this disease is the not knowing. We have no sure meds (NONE of them worked for my husband) and no sure prognosis other than eventual death. The disease progresses differently with each individual. The timeline is unique to each individual. Our neurologist is a wonderful physician who did his best to help. He responded to every query, told me to call him anytime if I had a question, and was quick to prescribe any med he thought might help. Anything I asked for, he jumped to deliver. I think the reason he did that is because there was so little he could do in the final analysis. Physicians want to heal and it must be frustrating when you cannot. Given your father's age, and your description of the progression of his disease, it sounds as though LBD is progressing quickly in his case. I say to that, good! I would never wish my husband back in that prison of a body that no longer served him well. I am happy that the worst part only lasted about 2 years and I was able to take care of him throughout. As a believer, I know where he is and it is a whole lot better than where he was. During the last 3 years of his life, my husband stopped reading the newspaper, which he read every morning before that, and he watched tv less and less. In fact, he became rather intolerant of the noise of television and if I had it on, he would ask me to turn it off. He preferred sitting quietly in his chair or talking to me (asking the same questions over and over). Mostly, he preferred lying or sleeping in his bed in a dimly lit room. As a caregiver, you have to let go of the person that WAS and embrace the person that IS. Your stepmother is now facing that decision because your father is never going to be what he was before and she will have to accept that and relax in the now as much as possible. It is a " settling in " process, I believe, settling in for the duration, however long that is. Didn't intend for such a long response, but I guess that is my " venting " on the issue of this dreadful disease. I will pray for wisdom for your family in the coming days as I prayed for wisdom in my response to the disease during our battle with it on a daily basis. It's kind of like the AA prayer about changing the things you can and accepting the things you cannot change. Blessings, Cassie To: LBDcaregivers From: gilbertcheryl@... Date: Mon, 12 Mar 2012 03:19:13 +0000 Subject: reluctant intro I've been lurking for a bit and reading posts. ly, I'm not thrilled to have the qualifications to be on this list. My father, Bill, who is 85 and previously a chemical engineer lives several hundred miles from me with my stepmother, Pat. My dad has LBD. He has had symptoms for several years....drooling, stiffness, worsening balance and increasing falls, severe constipation and mildly slower thinking. He had a long history of wild dreams...to the point that Dad and Pat had slept in separate rooms due to his acting out his dreams. I am a family doctor but try not to practice on any family members but on thinking about his symptoms, I contacted his doc who is a friend of mine and told him what I thought was occurring (LBD). I hoped that I was wrong although he agreed. In March of 2011 Dad called me to tell me very matter of factly that he was having visual hallucinations. A disturbing call to be sure. I went with my dad to a neurologist visit this fall and told the doc what I thought was going on. Unfortunately, that neurologist was not helpful. It was interesting and disturbing to be on the other side of the unhelpful consult. Anyway, he tried low dose sinemet with no discerable improvement but lots of nausea. Dad finally saw a different neurologist last month who correctly diagnosed him with LBD and started him on higher dose sinemet and low dose seroquel. He is VERY unsteady with very frequent falls. Dad was not able to sleep at this point which was very disturbing. The higher dose of sinemet caused nausea and the seroquel caused a bit too much sedation but at least he was sleeping but when I would talk with him things sounded stable. He still has hallucinations but they are not disturbing to him for the most part. He went back to the neurologist this week and apparently complained of side effects and she asked him if the meds were helping. He said no, so apparently she stopped both meds on Thurday. Friday am while at my office seeing patients I got a call from dad that his hand was drawing and numb and that his leg felt numb also. I thought this could be a stroke and told him to go immediately to the er. They dxed a muscle spasm and sent him home after a ct scan was normal. (The thought passed thru my mind...which is worse....LBD vs passing away from a stroke). Yesterday (the next day) I got a very worried call from Pat. Abruptly that morning, Dad had no idea what medications he was taking, could not read (he has continued to read up until now as a major source of pleasure to him), could not watch tv and was unable to figure out to put on a shirt. She and I talked and we restarted the sinemet and seroquel since stopping those immediately preceded this abrupt and severe turn for the worse. By bedtime he was able to follow tv a bit. Today he still cannot read more than a word or two but is able to follow TV. I didn't inquire about exactly what else is there or missing but we did chat on the phone and the conversation seemed fairly normal (the newer normal). This whole process is so disturbing and frustrating. I am worried and know that the future from here is very unpleasant but not wanting to frighten my family but help them be realistic as well. My dad asked me how long people with this live and I told him 10 years. I don't think that's accurate but I don't know how long anyone will live and I didn't want to frighten him. I don't want to practice medicine for my dad but I don't want docs to be stupid either. ARGHHH! Thanks for letting me vent. This is tough. My mother lives about 4 hours in the opposite direction from my father (I live about midway between them). She lives by herself (but my sister lives nearby) and has early signs of dementia but nothing severe yet. She is driving my sister crazy at times. My husband's parents live about 10 hours away in assisted living. His father has severe alzheimer disease and his mother has parkinson disease and severe osteoporosis with compression fractures. She is mentally at about 1/2 speed. I have a 16 year old daughter at home and I practice full time in a stressful profession. Cheryl Fayetteville, AR Quote Link to comment Share on other sites More sharing options...
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