Guest guest Posted March 23, 2008 Report Share Posted March 23, 2008 Hi, Pamela I'm afraid I don't have answers for you but, there are many on this list who will. I just wanted to welcome you to the list. My mother is also my LBD loved one. She just moved in with us two weeks ago. My dad passed away in 2001. Gladys -- I am new here... Well, not really new, I have been " lurking " sense July '07, but this is my first post. My mother's nuro Dr. thought she might have LBD back in July but was not sure until last week. She has been on Resperdol for the Hallucinations sense July and it worked. However, in the last month she has been treated with three different antibiotics for a Urinary Track Infection (UTI) and the last of the three was Augmenten, which gave her diarrhea for a whole week or more. It weakened her and then she became so tired all of the time, and having a hard time walking. She walks with a walker (or was until yesterday) and " shuffles like Tim Conway did on the Carol Burnett show. The Dr. says she has LBD with Parkensinsons like symptoms yet she DOES NOT have Parkeninsons. I am totally confused and it breaks my heart. My dad called this morning and said that she had tried to get up out of bed and feel out and hit her head. Blood everywhere, as head wounds always do, but it turns out it was not so bad. He said he had to put her in a wheel chair yesterday because she could no longer use her walker safely. I stay with her Monday through Fri. all day in order to help give my dad some relief. We also have Home Health services coming in three times a week to bath her. She is 76 and also was diagnosed with a very rare auto immune disease called Takayasu's Arteritis I just wonder if the years of prednisone use could have brought the LBD on? Also, is LBD hereditary? Oh, and they think she STILL has a UTI......sigh...... Happy Easter, Pamela from Oklahoma **************Create a Home Theater Like the Pros. Watch the video on AOL Home. (http://home.aol com/diy/home-improvement-eric-stromer?video=15?ncid=aolhom00030000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2008 Report Share Posted March 23, 2008 --- Hi Pamela, I am not sure the average life span of an lbder , I think it varies and depends, I think some fade very fast and others slowly get worse.My mom is lbd, I wanted to welcome you to the group, Im very sorry to hear about your mother.I hope you can find as many answers as you need here and any help you may need.This is an amazing group of people.My very best to you. Ron In LBDcaregivers , " Gladys Stefany " wrote: > > Hi, Pamela > > I'm afraid I don't have answers for you but, there are many on this list who > will. I just wanted to welcome you to the list. My mother is also my LBD > loved one. She just moved in with us two weeks ago. My dad passed away in > 2001. > > Gladys > > -- I am new here... > > Well, not really new, I have been " lurking " sense July '07, but this is my > first post. > > My mother's nuro Dr. thought she might have LBD back in July but was not > sure until last week. She has been on Resperdol for the Hallucinations > sense > July and it worked. However, in the last month she has been treated with > three > different antibiotics for a Urinary Track Infection (UTI) and the last of > the > three was Augmenten, which gave her diarrhea for a whole week or more. It > weakened her and then she became so tired all of the time, and having a hard > time walking. She walks with a walker (or was until yesterday) and " shuffles > > like Tim Conway did on the Carol Burnett show. The Dr. says she has LBD with > Parkensinsons like symptoms yet she DOES NOT have Parkeninsons. I am totally > confused and it breaks my heart. My dad called this morning and said that > she > had tried to get up out of bed and feel out and hit her head. Blood > everywhere, > as head wounds always do, but it turns out it was not so bad. He said he > had to put her in a wheel chair yesterday because she could no longer use > her > walker safely. > > I stay with her Monday through Fri. all day in order to help give my dad > some relief. We also have Home Health services coming in three times a week > to > bath her. She is 76 and also was diagnosed with a very rare auto immune > disease > called Takayasu's Arteritis > I just wonder if the years of prednisone use could have brought the LBD on? > > Also, is LBD hereditary? > > Oh, and they think she STILL has a UTI......sigh...... > > Happy Easter, > Pamela from Oklahoma > > > > > **************Create a Home Theater Like the Pros. Watch the video on AOL > Home. > (http://home.aol > com/diy/home-improvement-eric-stromer?video=15?ncid=aolhom00030000000001) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2008 Report Share Posted March 23, 2008 Thank you for the warm welcome, Gladys. I also meant to note that the diagnosis for Takayasu's Arteritis was 20 years agao and that has how long she has been on a cocktain of Methatrexate and Prednisone. Just wondering if this LBD is something that can be brought on by another disease or are you born with it?? Night, Pamela > > Hi, Pamela > > I'm afraid I don't have answers for you but, there are many on this list who > will. I just wanted to welcome you to the list. My mother is also my LBD > loved one. She just moved in with us two weeks ago. My dad passed away in > 2001. > > Gladys > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2008 Report Share Posted March 23, 2008 Ron, thank you for your warm welcome, too. Where is it that you moved to? I am trying to read past e-mails and noticed that you mentioned " 's " . Sincerely, Pamela > > --- > Hi Pamela, > I am not sure the average life span of an lbder , I think it varies > and depends, I think some fade very fast and others slowly get > worse.My mom is lbd, I wanted to welcome you to the group, Im very > sorry to hear about your mother.I hope you can find as many answers as > you need here and any help you may need.This is an amazing group of > people.My very best to you. Ron > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2008 Report Share Posted March 24, 2008 Hi, Pamela... I'm also from Oklahoma...Tulsa, in fact. Haven't we been having some beautiful weather the past week??? I've been on spring break, and have been enjoying as much time outdoors as possible. My mom is 79, and just recently diagnosed with LBD, but she was misdiagnosed for several years. She had " depression " and then " Parkinson's " and then " depression, anxiety and Parkinson's " , and I never could get a straight answer from her neurologist about why the dopamine drugs didn't help the Parkinson's if that's what she had. Finally, in the latter part of January/first part of February, she began hallucinating and seeing demons and angels and all kinds of stuff. We put her in the hospital, and I insisted that we get a new neurologist. We found Dr. Richter through St. Medical here in Tulsa. After going over all her tests and talking extensively with me and my sister, he diagnosed her with Lewy Body Dementia. She fits it to a " T " . The literature I've read says the " average " life span after diagnosis is 6-8 years, but since we've been battling Mom's " depression " and " Parkinson's " for 10 years, who knows? She's lost all ability to walk, she eats little, she sleeps a lot. She fell several times before we could get her to use the wheelchair. She's convinced that her problem is that she fell and hurt her head. I guess in one of her few lucid moments I could explain to her that she has LBD, but what would it accomplish? She has few lucid moments where she can hold a REAL conversation, but she talks a lot about God and Jesus and one's personal salvation and the need to confess all sins of adultery and fornication...*LOL* We were all together today for Easter, Mom and Dad, all four of their children, and spouses, and grandchildren and great-grandchildren. She questioned each of us about our religious beliefs, but couldn't hold a conversation with anyone other than that. My two brothers were there (one of whom just got out of the hospital about an hour before from having a clean-out of one of his carotid arteries), and while it was sad that she was so out of it, it was also good because the only times they've talked to her is when she will have my Dad call them during a lucid time. She repeated herself over and over, blessing each of them with the good health of the healthiest man in the United States, and the money of the richest man in the U.S. I told each of them privately that this is more her " normal " state than the times they talk to her on the phone. We've had to redefine normal almost every day. From what I have read, LBD's destruction of the nerves and neural pathways in the brain causes autonomic system shutdown. It's already affected Mom's ability to walk, and she either sweats profusely or covers up with multiple blankets. She either wants to get up to use the commode many many times per day, or she's incontinent and is losing control of her bowel functions as well. We also have Home Health, and they've been a godsend. Mom is taller than I am, and I have lots of problems in trying to assist her in and out of her hospital bed. We did get a low bed with rails, and it makes it easier for us to help her. This is a good place to be. The people I've found here are sweet and kind and supportive, and so willing and ready to help out with an answer, a prayer for strength, a shoulder to cry on... Jannis " They that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; they shall walk and not faint. " -- Isaiah 40:31 --------------------------------- Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2008 Report Share Posted March 24, 2008 Pam, a big warm welcome! You will get answers, kind treatment, and loving help here. Love a lot, Imogene Caregiver for my true Texas Gentleman Husband of 37 years. First diagnosed with Alzheimer's by a Neurologist OCT, 2005. But, on May 2, 2006 Dr. Schillerstrom, Geriatric/Psychiatrist diagnosed LBD with Parkinsonism. My precious husband, Don, is taking Zoloft and Razadyne. A happy personality is contagious. Infect someone today. In a message dated 3/23/2008 8:48:30 PM Central Standard Time, kickbuttbooks@... writes: Well, not really new, I have been " lurking " sense July '07, but this is my first post. My mother's nuro Dr. thought she might have LBD back in July but was not sure until last week. She has been on Resperdol for the Hallucinations sense July and it worked. However, in the last month she has been treated with three different antibiotics for a Urinary Track Infection (UTI) and the last of the three was Augmenten, which gave her diarrhea for a whole week or more. It weakened her and then she became so tired all of the time, and having a hard time walking. She walks with a walker (or was until yesterday) and " shuffles " like Tim Conway did on the Carol Burnett show. The Dr. says she has LBD with Parkensinsons like symptoms yet she DOES NOT have Parkeninsons. I am totally confused and it breaks my heart. My dad called this morning and said that she had tried to get up out of bed and feel out and hit her head. Blood everywhere, as head wounds always do, but it turns out it was not so bad. He said he had to put her in a wheel chair yesterday because she could no longer use her walker safely. I stay with her Monday through Fri. all day in order to help give my dad some relief. We also have Home Health services coming in three times a week to bath her. She is 76 and also was diagnosed with a very rare auto immune disease called Takayasu's Arteritis I just wonder if the years of prednisone use could have brought the LBD on? Also, is LBD hereditary? Oh, and they think she STILL has a UTI......sigh...... Happy Easter, Pamela from Oklahoma **************Create a Home Theater Like the Pros. Watch the video on AOL Home. (http://home.aol.com/diy/home-improvement-eric-stromer?video=15?ncid=aolhom00030\ 000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2008 Report Share Posted March 24, 2008 Hi Jannis and Pamela, There is a thought out there that the prognosis if Parkinsons symptoms are the first to appear, before the dementia, is more like 13-14 years. If the dementia is the first to appear, then 6-8 years is more the average. My mom lived 13 years from her first tremor leading to Parkinsons diagnosis, about 7 years from obvious cognitive impairment. , Oakville Ont. Mother, age 92, died Aug. 12/06 after 13 year decline from PDD > > Hi, Pamela... > > I'm also from Oklahoma...Tulsa, in fact. Haven't we been having some beautiful weather the past week??? I've been on spring break, and have been enjoying as much time outdoors as possible. > > My mom is 79, and just recently diagnosed with LBD, but she was misdiagnosed for several years. She had " depression " and then " Parkinson's " and then " depression, anxiety and Parkinson's " , and I never could get a straight answer from her neurologist about why the dopamine drugs didn't help the Parkinson's if that's what she had. > > Finally, in the latter part of January/first part of February, she began hallucinating and seeing demons and angels and all kinds of stuff. We put her in the hospital, and I insisted that we get a new neurologist. We found Dr. Richter through St. Medical here in Tulsa. After going over all her tests and talking extensively with me and my sister, he diagnosed her with Lewy Body Dementia. She fits it to a " T " . > > The literature I've read says the " average " life span after diagnosis is 6-8 years, but since we've been battling Mom's " depression " and " Parkinson's " for 10 years, who knows? She's lost all ability to walk, she eats little, she sleeps a lot. She fell several times before we could get her to use the wheelchair. She's convinced that her problem is that she fell and hurt her head. I guess in one of her few lucid moments I could explain to her that she has LBD, but what would it accomplish? She has few lucid moments where she can hold a REAL conversation, but she talks a lot about God and Jesus and one's personal salvation and the need to confess all sins of adultery and fornication...*LOL* > > We were all together today for Easter, Mom and Dad, all four of their children, and spouses, and grandchildren and great-grandchildren. She questioned each of us about our religious beliefs, but couldn't hold a conversation with anyone other than that. > > My two brothers were there (one of whom just got out of the hospital about an hour before from having a clean-out of one of his carotid arteries), and while it was sad that she was so out of it, it was also good because the only times they've talked to her is when she will have my Dad call them during a lucid time. She repeated herself over and over, blessing each of them with the good health of the healthiest man in the United States, and the money of the richest man in the U.S. I told each of them privately that this is more her " normal " state than the times they talk to her on the phone. We've had to redefine normal almost every day. > > From what I have read, LBD's destruction of the nerves and neural pathways in the brain causes autonomic system shutdown. It's already affected Mom's ability to walk, and she either sweats profusely or covers up with multiple blankets. She either wants to get up to use the commode many many times per day, or she's incontinent and is losing control of her bowel functions as well. > > We also have Home Health, and they've been a godsend. Mom is taller than I am, and I have lots of problems in trying to assist her in and out of her hospital bed. We did get a low bed with rails, and it makes it easier for us to help her. > > This is a good place to be. The people I've found here are sweet and kind and supportive, and so willing and ready to help out with an answer, a prayer for strength, a shoulder to cry on... > > Jannis > > > " They that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; they shall walk and not faint. " -- Isaiah 40:31 > > --------------------------------- > Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2008 Report Share Posted March 24, 2008 Wow! I'm going to just have to trust God on this one. So many things were happening with Mom before and after Dad's death in 2001 that I have no idea when this all started. For a number of years before Dad died, Mom would be walking, standing, and just fall for no apparent reason. We thought it was her Meniere's disease. Then, when she was diagnosed with PD (about 4 or 5 years ago), we thought the falls were due to PD. We didn't really notice the dementia until about 4 years ago when she moved back up here permanently but thinking back there were signs as early as 5 or 6 years ago (inability to make decisions, impulsive behavior, lack of judgment). So, she could have had this as long as 8 or 9 years ago or as few as 4 years ago. I'm guessing it was more like 8 or 9 at this point, but it is all in God's hands anyway. I'm just cherishing every moment we have and taking it one day (sometimes one hour) at a time. Gladys -- Re: I am new here... Hi Jannis and Pamela, There is a thought out there that the prognosis if Parkinsons symptoms are the first to appear, before the dementia, is more like 13-14 years. If the dementia is the first to appear, then 6-8 years is more the average. My mom lived 13 years from her first tremor leading to Parkinsons diagnosis, about 7 years from obvious cognitive impairment. , Oakville Ont. Mother, age 92, died Aug. 12/06 after 13 year decline from PDD > > Hi, Pamela... > > I'm also from Oklahoma...Tulsa, in fact. Haven't we been having some beautiful weather the past week??? I've been on spring break, and have been enjoying as much time outdoors as possible. > > My mom is 79, and just recently diagnosed with LBD, but she was misdiagnosed for several years. She had " depression " and then " Parkinson's " and then depression, anxiety and Parkinson's " , and I never could get a straight answer from her neurologist about why the dopamine drugs didn't help the Parkinson's if that's what she had. > > Finally, in the latter part of January/first part of February, she began hallucinating and seeing demons and angels and all kinds of stuff. We put her in the hospital and I insisted that we get a new neurologist. We found Dr. Richter through St. Medical here in Tulsa. After going over all her tests and talking extensively with me and my sister, he diagnosed her with Lewy Body Dementia. She fits it to a " T " . > > The literature I've read says the " average " life span after diagnosis is 6-8 years, but since we've been battling Mom's " depression " and " Parkinson's " for 10 years, who knows? She's lost all ability to walk, she eats little, she sleeps a lot. She fell several times before we could get her to use the wheelchair. She's convinced that her problem is that she fell and hurt her head. I guess in one of her few lucid moments I could explain to her that she has LBD, but what would it accomplish? She has few lucid moments where she can hold a REAL conversation, but she talks a lot about God and Jesus and one's personal salvation and the need to confess all sins of adultery and fornication...*LOL* > > We were all together today for Easter, Mom and Dad, all four of their children, and spouses, and grandchildren and great-grandchildren. She questioned each of us about our religious beliefs, but couldn't hold a conversation with anyone other than that. > > My two brothers were there (one of whom just got out of the hospital about an hour before from having a clean-out of one of his carotid arteries), and while it was sad that she was so out of it, it was also good because the only times they've talked to her is when she will have my Dad call them during a lucid time. She repeated herself over and over, blessing each of them with the good health of the healthiest man in the United States, and the money of the richest man in the U.S. I told each of them privately that this is more her " normal " state than the times they talk to her on the phone. We've had to redefine normal almost every day. > > From what I have read, LBD's destruction of the nerves and neural pathways in the brain causes autonomic system shutdown. It's already affected Mom's ability to walk, and she either sweats profusely or covers up with multiple blankets. She either wants to get up to use the commode many many times per day, or she's incontinent and is losing control of her bowel functions as well. > > We also have Home Health, and they've been a godsend. Mom is taller than I am, and I have lots of problems in trying to assist her in and out of her hospital bed We did get a low bed with rails, and it makes it easier for us to help her. > > This is a good place to be. The people I've found here are sweet and kind and supportive, and so willing and ready to help out with an answer, a prayer for strength, a shoulder to cry on... > > Jannis > > > " They that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; they shall walk and not faint. " -- Isaiah 40:31 > > --------------------------------- > Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2008 Report Share Posted March 24, 2008 My husband had dementia (AD) first, then the Parkinsonism later on. His autopsy showed both AD and LBD as well as a possible vascular problem. He lived approximately 7 years from the first AD dx. JuneC --- stimtimminss wrote: > Hi Jannis and Pamela, > There is a thought out there that the prognosis if > Parkinsons symptoms are the first to > appear, before the dementia, is more like 13-14 > years. If the dementia is the first to > appear, then 6-8 years is more the average. My mom > lived 13 years from her first tremor > leading to Parkinsons diagnosis, about 7 years from > obvious cognitive impairment. > > , Oakville Ont. > > Mother, age 92, died Aug. 12/06 after 13 year > decline from PDD > > > > > > Hi, Pamela... > > > > I'm also from Oklahoma...Tulsa, in fact. > Haven't we been having some beautiful > weather the past week??? I've been on spring break, > and have been enjoying as much time > outdoors as possible. > > > > My mom is 79, and just recently diagnosed with > LBD, but she was misdiagnosed for > several years. She had " depression " and then > " Parkinson's " and then " depression, anxiety > and Parkinson's " , and I never could get a straight > answer from her neurologist about why > the dopamine drugs didn't help the Parkinson's if > that's what she had. > > > > Finally, in the latter part of January/first > part of February, she began hallucinating and > seeing demons and angels and all kinds of stuff. We > put her in the hospital, and I insisted > that we get a new neurologist. We found Dr. Richter > through St. Medical here in > Tulsa. After going over all her tests and talking > extensively with me and my sister, he > diagnosed her with Lewy Body Dementia. She fits it > to a " T " . > > > > The literature I've read says the " average " life > span after diagnosis is 6-8 years, but > since we've been battling Mom's " depression " and > " Parkinson's " for 10 years, who knows? > She's lost all ability to walk, she eats little, she > sleeps a lot. She fell several times before > we could get her to use the wheelchair. She's > convinced that her problem is that she fell > and hurt her head. I guess in one of her few lucid > moments I could explain to her that she > has LBD, but what would it accomplish? She has few > lucid moments where she can hold a > REAL conversation, but she talks a lot about God > and Jesus and one's personal salvation > and the need to confess all sins of adultery and > fornication...*LOL* > > > > We were all together today for Easter, Mom and > Dad, all four of their children, and > spouses, and grandchildren and great-grandchildren. > She questioned each of us about > our religious beliefs, but couldn't hold a > conversation with anyone other than that. > > > > My two brothers were there (one of whom just got > out of the hospital about an hour > before from having a clean-out of one of his carotid > arteries), and while it was sad that > she was so out of it, it was also good because the > only times they've talked to her is when > she will have my Dad call them during a lucid time. > She repeated herself over and over, > blessing each of them with the good health of the > healthiest man in the United States, and > the money of the richest man in the U.S. I told > each of them privately that this is more her > " normal " state than the times they talk to her on > the phone. We've had to redefine normal > almost every day. > > > > From what I have read, LBD's destruction of the > nerves and neural pathways in the > brain causes autonomic system shutdown. It's > already affected Mom's ability to walk, and > she either sweats profusely or covers up with > multiple blankets. She either wants to get > up to use the commode many many times per day, or > she's incontinent and is losing > control of her bowel functions as well. > > > > We also have Home Health, and they've been a > godsend. Mom is taller than I am, and I > have lots of problems in trying to assist her in and > out of her hospital bed. We did get a > low bed with rails, and it makes it easier for us to > help her. > > > > This is a good place to be. The people I've > found here are sweet and kind and > supportive, and so willing and ready to help out > with an answer, a prayer for strength, a > shoulder to cry on... > > > > Jannis > > > > > > " They that wait upon the LORD shall renew their > strength; they shall mount up with > wings as eagles; they shall run, and not be weary; > they shall walk and not faint. " -- Isaiah > 40:31 > > > > --------------------------------- > > Be a better friend, newshound, and know-it-all > with Yahoo! Mobile. Try it now. > > > > [Non-text portions of this message have been > removed] > > > > > ________________________________________________________________________________\ ____ Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2008 Report Share Posted March 24, 2008 My daughter's MIL had vascular disease, they called it, but it sounds like what you are talking about. She had similar symptoms to Parkinson's but it wasn't. She became wheelchair bound the last several years. She also was getting some dementia, but they never had her checked for any diagnosis. She died about a year ago. I don't know if there is any connection, but I would think it would be possible. JuneC --- kickbuttbooks wrote: > Thank you for the warm welcome, Gladys. > > I also meant to note that the diagnosis for > Takayasu's Arteritis was > 20 years agao and that has how long she has been on > a cocktain of > Methatrexate and Prednisone. Just wondering if this > LBD is something > that can be brought on by another disease or are you > born with it?? > > Night, Pamela > > > > > > Hi, Pamela > > > > I'm afraid I don't have answers for you but, there > are many on this > list who > > will. I just wanted to welcome you to the list. > My mother is also > my LBD > > loved one. She just moved in with us two weeks > ago. My dad passed > away in > > 2001. > > > > Gladys > > > > > > > > ________________________________________________________________________________\ ____ Looking for last minute shopping deals? Find them fast with Yahoo! Search. http://tools.search.yahoo.com/newsearch/category.php?category=shopping Quote Link to comment Share on other sites More sharing options...
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