Guest guest Posted March 6, 2005 Report Share Posted March 6, 2005 Welcome to the group. Glad you found us as you will have more support to travel through this journey. Hugs from the U.S.- Sandie and -- New to all this Hi, I'm new here & I live in the UK. Mum was diagnosed with LBD about 5months ago after a year long fight to get the medical profession to recognise there was a problem. She has been showing signs of this for about 3 but covered it up well. However, she lived alone & gradually it became clear that all was far from well. She lost 4stone, started wandering about at night, pestering her neighbours at all times of day & night. She has declined rapidly in the last 6 months & now doesn't really recognise us when we visit. We have to say 'Hi mom' before she even glances at us which is so hard to bear. My sister & I took on most of the care at the beginnig, but this proved impossible as I live 2 hours away & my sister lives 1 1/2 hours away. Anyway, to cut a long story short, we had to admit her to hospital for tests due to her weight loss & confusion, passing out in the street & hallucinations. These came up with the LBD diagnosis. Unfortunately we have had to put mum in a home that caters for her needs as neither of us is in a position to care for her now, but she is near my sister & is visited regularly. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2005 Report Share Posted March 6, 2005 Hi I'm Kathleen and I too live in UK - Scotland. My dad has LBD, is 79 years old and was diagnosed Feb 2002 although like your mum he had symptoms way before that. We were first of all told Vascular Dementia as we thought he was having a series of tiny strokes - TIA attacks. I think in the begining he DID have these and a brain scan shows some small stroke damage, but in year 2 with hallucinations, paranoia, shuffling gait, then these 'black out' periods where he can't be roused etc. we were re-diagnosed with Lewey Body Dementia. My sister and I with my mother cared for my dad at home for 2 full years. One of us went to my mothers on alternate days EVERY day for that two years. Year one we managed things not too badly, but by year two things were not good and the crisis both physical and mental were piling on top of each other at my dads home. He went into permanent care March 2004, a really heartbreaking decision but by that time my mothers health and my own health were also suffering, I had subsequent treatment for depression & stress.....my mum lost 3st in weight. My dad is in a hospital unit specialising in Dementia and still with the same wonderful consultant who's been with us since day one......we have a full physciatric team and also a general ward doctor to cope with his many infections etc. that result from immobility and other LBD complaints. I find Lewy Body quite unheard of in my part of the UK - what about you? I only found this site about a month ago but have already gleaned a wealth of information.......hope it helps for you too. Kathleen. New to all this Hi, I'm new here & I live in the UK. Mum was diagnosed with LBD about 5months ago after a year long fight to get the medical profession to recognise there was a problem. She has been showing signs of this for about 3 but covered it up well. However, she lived alone & gradually it became clear that all was far from well. She lost 4stone, started wandering about at night, pestering her neighbours at all times of day & night. She has declined rapidly in the last 6 months & now doesn't really recognise us when we visit. We have to say 'Hi mom' before she even glances at us which is so hard to bear. My sister & I took on most of the care at the beginnig, but this proved impossible as I live 2 hours away & my sister lives 1 1/2 hours away. Anyway, to cut a long story short, we had to admit her to hospital for tests due to her weight loss & confusion, passing out in the street & hallucinations. These came up with the LBD diagnosis. Unfortunately we have had to put mum in a home that caters for her needs as neither of us is in a position to care for her now, but she is near my sister & is visited regularly. Welcome to LBDcaregivers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2005 Report Share Posted March 6, 2005 Hi Kathleen, yes, I too find LBD very much unheard of & I think this contributes to the length of time taken for diagnosis. We did a lot of research on the web as my mums symptoms became worse & we pretty much came to the LBD conclusion ourselves as nothing else quite fit. Mum has not long turned 70, but I get the impression that it's not that young to be showing these symptoms. Many thanks for the contact & I wish you all the best in your journey with your dad Anne New to all this Hi, I'm new here & I live in the UK. Mum was diagnosed with LBD about 5months ago after a year long fight to get the medical profession to recognise there was a problem. She has been showing signs of this for about 3 but covered it up well. However, she lived alone & gradually it became clear that all was far from well. She lost 4stone, started wandering about at night, pestering her neighbours at all times of day & night. She has declined rapidly in the last 6 months & now doesn't really recognise us when we visit. We have to say 'Hi mom' before she even glances at us which is so hard to bear. My sister & I took on most of the care at the beginnig, but this proved impossible as I live 2 hours away & my sister lives 1 1/2 hours away. Anyway, to cut a long story short, we had to admit her to hospital for tests due to her weight loss & confusion, passing out in the street & hallucinations. These came up with the LBD diagnosis. Unfortunately we have had to put mum in a home that caters for her needs as neither of us is in a position to care for her now, but she is near my sister & is visited regularly. Welcome to LBDcaregivers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2005 Report Share Posted March 6, 2005 Hi group - I'm new to this group and still in a state of shock over the diagnosis of LBD for my husband. He had been diagnosed with vascular dementia by Kaiser about 8 months ago.(based on an MRI and also some simple neurological testing.) We went thru testing at UC in Dec and Jan and we had the evaluation this week with their diagnosis of LBD. My husband is 72 and has shown memory deterioration over the past 3-4 years. The hallucinations started last summer and I thought it was because he is taking all kinds of medicine. He doesn't have any of the parkinson's symptoms. Some days he acts very normal, but other days his memory is very poor. No one in the family had ever heard of LBD so we all have been researching it. Anyway as I said the family is in a state of shock and we are all grieving over this news. It is hard to think of the future and what it might bring. I will look for support from this group and hopefully will be able to offer support myself. I know I will have many questions. I know the life expectancy is 5-7 years from onset. Actually one question is how do you figure out the onset of this disease? Is there any predictable pattern to LBD? Thank you, Hope Petaluma, California _____ From: Anne Sent: Sunday, March 06, 2005 9:10 AM To: LBDcaregivers Subject: Re: New to all this Hi Kathleen, yes, I too find LBD very much unheard of & I think this contributes to the length of time taken for diagnosis. We did a lot of research on the web as my mums symptoms became worse & we pretty much came to the LBD conclusion ourselves as nothing else quite fit. Mum has not long turned 70, but I get the impression that it's not that young to be showing these symptoms. Many thanks for the contact & I wish you all the best in your journey with your dad Anne New to all this Hi, I'm new here & I live in the UK. Mum was diagnosed with LBD about 5months ago after a year long fight to get the medical profession to recognise there was a problem. She has been showing signs of this for about 3 but covered it up well. However, she lived alone & gradually it became clear that all was far from well. She lost 4stone, started wandering about at night, pestering her neighbours at all times of day & night. She has declined rapidly in the last 6 months & now doesn't really recognise us when we visit. We have to say 'Hi mom' before she even glances at us which is so hard to bear. My sister & I took on most of the care at the beginnig, but this proved impossible as I live 2 hours away & my sister lives 1 1/2 hours away. Anyway, to cut a long story short, we had to admit her to hospital for tests due to her weight loss & confusion, passing out in the street & hallucinations. These came up with the LBD diagnosis. Unfortunately we have had to put mum in a home that caters for her needs as neither of us is in a position to care for her now, but she is near my sister & is visited regularly. Welcome to LBDcaregivers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2005 Report Share Posted March 7, 2005 Hi - I'm Kathleen and live in Scotland. My dad was also first diagnosed with Vascular Dementia.....to him we called it Vascular Disease, he was 76 and not a great coper, he would have freaked at the word Dementia. Anyway, after one year he was re-diagnosed with LBD when it became clear that hallucinations and Paranoia were a big feature of his disease. His hallucinations were incredible, he'd be perfectly utterly normal one minute then see people on the sofa having a conversation the next. His paranoia was also dreadful, he'd feel intruders in the house at night and would have my mum up with a torch-light trying to help him find them. People would come out of their cars in the car park and he'd say " there they are, they're after me you know, they think I murdered someone and are coming to get me " And this after answering quite sweetly to what would he prefer for dinner...... My dad was diangosed February 2002 but there is no real way to figure out the onset except now for gathering all information you can and trying to pin-point when it all started. Certainly we now know that my dad was showing symptoms for a couple of years before we got him to a Physco-Geriatrician, he was also still 'well enough' mentally back then not to want further investigation, but eventually we convinced him and got our Consultant on the case. He then kept an eye on my dad 3 monthly till symptoms etc. started getting worse and he was then our route to adding all sorts of other care & services. Everyone seems to progress through this disease in a different time-frame. I've read of some who go through it really quickly but I feel my dads progress through it has been painfully slow.....I'd say we're probably at the 5 or 6 year step in reality, my dad is inow in permanent hospital care and has been there for 1 year exactly. I hope this helps, it would seem there is no absolute method of detecting Lewy Body except by post mortem where a piece of the brain is taken for analysis, the diagnosis we get is based on recurring symptoms & usually a CT scan or something similair to rule out vascular and other Dementias. For now enjoy the better days & take the rest as they come to you, this group is wonderful and I'm sorry I only found it about a month ago. Kathleen - Scotland. New to all this Hi, I'm new here & I live in the UK. Mum was diagnosed with LBD about 5months ago after a year long fight to get the medical profession to recognise there was a problem. She has been showing signs of this for about 3 but covered it up well. However, she lived alone & gradually it became clear that all was far from well. She lost 4stone, started wandering about at night, pestering her neighbours at all times of day & night. She has declined rapidly in the last 6 months & now doesn't really recognise us when we visit. We have to say 'Hi mom' before she even glances at us which is so hard to bear. My sister & I took on most of the care at the beginnig, but this proved impossible as I live 2 hours away & my sister lives 1 1/2 hours away. Anyway, to cut a long story short, we had to admit her to hospital for tests due to her weight loss & confusion, passing out in the street & hallucinations. These came up with the LBD diagnosis. Unfortunately we have had to put mum in a home that caters for her needs as neither of us is in a position to care for her now, but she is near my sister & is visited regularly. Welcome to LBDcaregivers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2005 Report Share Posted March 7, 2005 Hi Hope, here I learned more about this disease than from any of the doctors with whom we dealt. It seems that there is no real pattern to this disease each case is a bit different. We sort of took it from day to day. My husband had LBD it was diagnosed in 2001, but I can look back and see that we were seeing signs of the disease as early as the late i990's. He was forced to cease practicing medicine in 1997 and had back surgery in 2000. Somewhere in this time frame I noted a bit of imbalance in his walking and a few hallucinations ............ at first I thought the hallucinations were the product of a good imagination. The kids and I laughed when he saw lakes, children playing, or an animal in the street. Once we realized what we were dealing with it was not funny. I did give him some parts of the articles on the disease to him as I felt the physician in him needed to know. Many people did not tell their LO what the disease was. After I told him he would see something and ask me if it were real or just his disease. Liam died in January of 2004 of another disease that was treated poorly. I am sure all the people on this site can give you better advice and more detailed information on the reactions of various medications as well as general support. I can add that it is imperative that you stay healthy because you will need all your strength todeal with your husband. Simmel > >Reply-To: LBDcaregivers >To: <LBDcaregivers > >Subject: RE: New to all this >Date: Sun, 6 Mar 2005 21:26:27 -0800 > > >Hi group - > >I'm new to this group and still in a state of shock over the diagnosis of >LBD for my husband. He had been diagnosed with vascular dementia by >Kaiser >about 8 months ago.(based on an MRI and also some simple neurological >testing.) We went thru testing at UC in Dec and Jan and we had the >evaluation this week with their diagnosis of LBD. My husband is 72 and has >shown memory deterioration over the past 3-4 years. The hallucinations >started last summer and I thought it was because he is taking all kinds of >medicine. He doesn't have any of the parkinson's symptoms. Some days he >acts very normal, but other days his memory is very poor. No one in the >family had ever heard of LBD so we all have been researching it. > >Anyway as I said the family is in a state of shock and we are all grieving >over this news. It is hard to think of the future and what it might bring. >I will look for support from this group and hopefully will be able to offer >support myself. I know I will have many questions. > > I know the life expectancy is 5-7 years from onset. Actually one question >is how do you figure out the onset of this disease? >Is there any predictable pattern to LBD? > >Thank you, > >Hope >Petaluma, California > > _____ > >From: Anne >Sent: Sunday, March 06, 2005 9:10 AM >To: LBDcaregivers >Subject: Re: New to all this > > >Hi Kathleen, >yes, I too find LBD very much unheard of & I think this contributes to the >length of time taken for diagnosis. We did a lot of research on the web as >my mums symptoms became worse & we pretty much came to the LBD conclusion >ourselves as nothing else quite fit. >Mum has not long turned 70, but I get the impression that it's not that >young to be showing these symptoms. >Many thanks for the contact & I wish you all the best in your journey with >your dad > >Anne > New to all this > > > > Hi, > I'm new here & I live in the UK. Mum was diagnosed with LBD about > 5months ago after a year long fight to get the medical profession to > recognise there was a problem. She has been showing signs of this > for about 3 but covered it up well. However, she lived alone & > gradually it became clear that all was far from well. She lost > 4stone, started wandering about at night, pestering her neighbours > at all times of day & night. She has declined rapidly in the last 6 > months & now doesn't really recognise us when we visit. We have to > say 'Hi mom' before she even glances at us which is so hard to bear. > My sister & I took on most of the care at the beginnig, but this > proved impossible as I live 2 hours away & my sister lives 1 1/2 > hours away. > Anyway, to cut a long story short, we had to admit her to hospital > for tests due to her weight loss & confusion, passing out in the > street & hallucinations. These came up with the LBD diagnosis. > Unfortunately we have had to put mum in a home that caters for her > needs as neither of us is in a position to care for her now, but she > is near my sister & is visited regularly. > > > > > > > Welcome to LBDcaregivers. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2005 Report Share Posted March 7, 2005 Welcome Hope... You wrote: >I know the life expectancy is 5-7 years from onset. Actually one question is how do you figure out the onset of this disease?< I believe it's an average duration of 5 to 7 years from diagnosis, not from onset. Naturally as LBD becomes more known and people are diagnosed earlier, the duration average will increase. When my father (now 86 dx'd 11/02) read about the duration when he was first diagnosed, he said, " You mean I have to live 7 years! " > Is there any predictable pattern to LBD?< My father told me the other day that the best way to describe what happens with the disease is, " Expect the unexpected! " The pattern will depend on which road the disease takes and what medications you will have to use. All patients are different in this respect. Where you will see patterns is once you've got a symptom, e.g., hallucinations, REM sleep disorder, Restless Leg Syndrome, fluctuations, rigidity, anxiety, etc., then you can come here to the group and find others with very similar stories about that symptom and perhaps get a handle on the progression or at least the management of it. What you don't know is which symptom/disorder your LO will get. The balancing act of medications is the big challenge. Your time and energies will be in the management of target symptoms rather than the disease as a whole, keeping in mind that it seems like everything has an impact on everything else. Remember Hope, you're among friends. We all understand, so ask questions, vent, have a 'pity party' (we've all done that), or share whatever joy you can squeeze out of your day. Hugs...Jan from Sacramento Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2005 Report Share Posted March 7, 2005 Thank you Jan for your caring words and good advise. I will read these posts and am sure they will help. I think as long as my husband is pretty coherent, I will share some of these wisdoms with him as well. Best, Hope in Petaluma _____ From: janchildress Sent: Monday, March 07, 2005 8:12 AM To: LBDcaregivers Subject: Re: New to all this Welcome Hope... You wrote: >I know the life expectancy is 5-7 years from onset. Actually one question is how do you figure out the onset of this disease?< I believe it's an average duration of 5 to 7 years from diagnosis, not from onset. Naturally as LBD becomes more known and people are diagnosed earlier, the duration average will increase. When my father (now 86 dx'd 11/02) read about the duration when he was first diagnosed, he said, " You mean I have to live 7 years! " > Is there any predictable pattern to LBD?< My father told me the other day that the best way to describe what happens with the disease is, " Expect the unexpected! " The pattern will depend on which road the disease takes and what medications you will have to use. All patients are different in this respect. Where you will see patterns is once you've got a symptom, e.g., hallucinations, REM sleep disorder, Restless Leg Syndrome, fluctuations, rigidity, anxiety, etc., then you can come here to the group and find others with very similar stories about that symptom and perhaps get a handle on the progression or at least the management of it. What you don't know is which symptom/disorder your LO will get. The balancing act of medications is the big challenge. Your time and energies will be in the management of target symptoms rather than the disease as a whole, keeping in mind that it seems like everything has an impact on everything else. Remember Hope, you're among friends. We all understand, so ask questions, vent, have a 'pity party' (we've all done that), or share whatever joy you can squeeze out of your day. Hugs...Jan from Sacramento Welcome to LBDcaregivers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2005 Report Share Posted March 7, 2005 Dear Hope, Two years ago, this past December, my mother drafted new Powers of Attorney, Medical Power of Attorney, and a Living Will. Had we delayed in helping Mom get those documents drafted, mom's care would have been much more difficult. It was only a few months later: when we visited the lawyer to do her taxes, it became very apparent to all of us, that window of time had closed. These documents became very important when she broke her hip, had hip replacement surgury, and when the confusion seemed to compound during her hospital stay. With them, I was able to emphasise that she wanted to come home. We were able to bring her home, where she rebounded. I know for many there comes a time, when home is nolonger an option. For us, we didn't want to have Mom drugged into a zombie, or alone in tears in a nursing home. Dann --- Hope wrote: --------------------------------- Thank you Jan for your caring words and good advise. I will read these posts and am sure they will help. I think as long as my husband is pretty coherent, I will share some of these wisdoms with him as well. Best, Hope in Petaluma _____ From: janchildress Sent: Monday, March 07, 2005 8:12 AM To: LBDcaregivers Subject: Re: New to all this Welcome Hope... You wrote: >I know the life expectancy is 5-7 years from onset. Actually one question is how do you figure out the onset of this disease?< I believe it's an average duration of 5 to 7 years from diagnosis, not from onset. Naturally as LBD becomes more known and people are diagnosed earlier, the duration average will increase. When my father (now 86 dx'd 11/02) read about the duration when he was first diagnosed, he said, " You mean I have to live 7 years! " > Is there any predictable pattern to LBD?< My father told me the other day that the best way to describe what happens with the disease is, " Expect the unexpected! " The pattern will depend on which road the disease takes and what medications you will have to use. All patients are different in this respect. Where you will see patterns is once you've got a symptom, e.g., hallucinations, REM sleep disorder, Restless Leg Syndrome, fluctuations, rigidity, anxiety, etc., then you can come here to the group and find others with very similar stories about that symptom and perhaps get a handle on the progression or at least the management of it. What you don't know is which symptom/disorder your LO will get. The balancing act of medications is the big challenge. Your time and energies will be in the management of target symptoms rather than the disease as a whole, keeping in mind that it seems like everything has an impact on everything else. Remember Hope, you're among friends. We all understand, so ask questions, vent, have a 'pity party' (we've all done that), or share whatever joy you can squeeze out of your day. Hugs...Jan from Sacramento Welcome to LBDcaregivers. Quote Link to comment Share on other sites More sharing options...
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