Guest guest Posted March 6, 2005 Report Share Posted March 6, 2005 Hi Hope, Welcome and glad you found this site. I am Jan Colello and live in the San Francisco Bay area. I live in the East Bay in Lafayette, CA. There are a few others in this same general area around the Bay Area and in Sacramento. I am meeting with Gracie, who lives in Central San on Thursday. She is on this site also and we are meeting for the first time. My husband and I also belong to Kaiser. My husband has LBD and was diagnosed in October 2003. He has parkinsonism, dementia, hallucinations and delusions amongst other symptoms. My husband was diagnosed with Parkinsons for 10 years before the dementia and hallucinations came into the picture and when they all came together, his neurologist dx him with LBD. I had never heard of it either. I thought I was all alone in battling this beast of a disease. I am so thankful to have found this site, it has been a lifesaver for me or I would be a basket case. Since my husband started with Parkinsons over 10 years ago, I now think it was the beginning of LBD and not Parkinsons. So it has been way over 5-7 years. Unless I count when it all came together in 2003, then it is only two years. I don't know, I don't think there is any real life expectancy time, it seems all the LO's on this site go at various times. Some faster than others. There are so many fluctuations in LBD that you never know what to expect hour to hour day to day month to month. I hope you find a lot of answers here to help you through the tough times........Jan Colello --- Hope wrote: > 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 Jan - thank you for your post, kind words and all the info. I know I will find comfort in this group and answers. Thanks to everyone. Best, Hope in Petaluma _____ From: Janet Colello Sent: Sunday, March 06, 2005 11:38 PM To: LBDcaregivers Subject: RE: New to all this/ Hope Hi Hope, Welcome and glad you found this site. I am Jan Colello and live in the San Francisco Bay area. I live in the East Bay in Lafayette, CA. There are a few others in this same general area around the Bay Area and in Sacramento. I am meeting with Gracie, who lives in Central San on Thursday. She is on this site also and we are meeting for the first time. My husband and I also belong to Kaiser. My husband has LBD and was diagnosed in October 2003. He has parkinsonism, dementia, hallucinations and delusions amongst other symptoms. My husband was diagnosed with Parkinsons for 10 years before the dementia and hallucinations came into the picture and when they all came together, his neurologist dx him with LBD. I had never heard of it either. I thought I was all alone in battling this beast of a disease. I am so thankful to have found this site, it has been a lifesaver for me or I would be a basket case. Since my husband started with Parkinsons over 10 years ago, I now think it was the beginning of LBD and not Parkinsons. So it has been way over 5-7 years. Unless I count when it all came together in 2003, then it is only two years. I don't know, I don't think there is any real life expectancy time, it seems all the LO's on this site go at various times. Some faster than others. There are so many fluctuations in LBD that you never know what to expect hour to hour day to day month to month. I hope you find a lot of answers here to help you through the tough times........Jan Colello --- Hope wrote: > 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 to the group Hope. Not sure if it has been mentioned, but there is also a caringspouses group that might be beneficial to you. Same type of entry at this group but for spouses only. You are welcome to stay here and join the other group. My dad lived out the typical 5-7 year range. This of course was upon diagnosis. I do believe that once the symptoms are recognized and more obvious consistently then diagnosis can be made. It is then that the 5-7 year range is in effect. Not everyone is the same though. We have had loved ones in here pass in less than a year, and up to 12+ years. Thank you for sharing your story. Sending hugs from the midwest - Iowa - Sandie and -- 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 Hope, My Dad's downhill slope has been very gradual. I first noticed that he was having cognitive problems in 1992. Dad worked as a title attorney in North Texas since he left the army after World War II. Before LBD, you could put him down anywhere in Dallas, Tarrant (Ft. Worth), Denton, Rockwall, or Collin counties, and he would have known exactly where he was immediately. When he got lost in Dallas, not 5 miles from the house, I knew something was up. Getting lost would have been completely normal for my mother-in-law and not unusual for my mother. But when my Dad got lost, I knew he was in trouble. He didn't exhibit anything but mild, passing confusion for the next several years. I think I was the only one to notice at first. He wasn't diagnosed until 1997. Only in the past 2 years have we really seen major changes. I think everyone's progression is different. Margee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2005 Report Share Posted March 7, 2005 Thanks Sandie and - I am learning ( I wouldn't say enjoying the posts) from all that I read. It really seems like a sad illness. I will look into the caringspouses group. My family and I have all been eagerly looking for info since none of us had ever heard of this before. And I don't think our medical plan, Kaiser will be much help. Right now there is a window of enjoyment and we are going to take it. My hasband has said that he hopes we have some more good years together. I HOPE so too. Thanks for your hugs and the same back to you, Hope ( in sunny northern Calif where it really feels like spring.) Petaluma, California _____ From: Sandie and Pearce Sent: Monday, March 07, 2005 4:24 PM To: LBDcaregivers Subject: RE: New to all this/ Hope Welcome to the group Hope. Not sure if it has been mentioned, but there is also a caringspouses group that might be beneficial to you. Same type of entry at this group but for spouses only. You are welcome to stay here and join the other group. My dad lived out the typical 5-7 year range. This of course was upon diagnosis. I do believe that once the symptoms are recognized and more obvious consistently then diagnosis can be made. It is then that the 5-7 year range is in effect. Not everyone is the same though. We have had loved ones in here pass in less than a year, and up to 12+ years. Thank you for sharing your story. Sending hugs from the midwest - Iowa - Sandie and -- 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 Hope- I quickly learned in life that each day is a gift. My mom passed away 22 years ago, from lung cancer, and my dad 2 1/2 yrs ago from LBD. Um, life definitely is too short not to find some type of good in every day. There are Godincidences for every heart open to finding them. 's mom is still living in New Zealand, will be 76 next week, and is still struggling with LBD. I had the honor of meeting her. I would suggest that any information you find online, print it out and take it with you to every doctors appointment, any hospital admission, and even anyone else that will listen. There is always room to educate the public on LBD. I always carried a packet of information and gladly gave it away. Thank you for the return hugs - greatly appreciated!! Do come here as often as you want. We would love to continue to read your story and do know you are not alone in this journey. Thinking of you- Sandie and -- 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 8, 2005 Report Share Posted March 8, 2005 Another question = I don't know where to go to find the caringspouses group. Can someone please advise? Thanks, Hope Petaluma, Calif. _____ From: Sandie and Pearce Sent: Monday, March 07, 2005 9:45 PM To: LBDcaregivers Subject: RE: New to all this/ Hope Hope- I quickly learned in life that each day is a gift. My mom passed away 22 years ago, from lung cancer, and my dad 2 1/2 yrs ago from LBD. Um, life definitely is too short not to find some type of good in every day. There are Godincidences for every heart open to finding them. 's mom is still living in New Zealand, will be 76 next week, and is still struggling with LBD. I had the honor of meeting her. I would suggest that any information you find online, print it out and take it with you to every doctors appointment, any hospital admission, and even anyone else that will listen. There is always room to educate the public on LBD. I always carried a packet of information and gladly gave it away. Thank you for the return hugs - greatly appreciated!! Do come here as often as you want. We would love to continue to read your story and do know you are not alone in this journey. Thinking of you- Sandie and -- 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 8, 2005 Report Share Posted March 8, 2005 Hope- If you click on this link http://www.lewybodydementia.org/emailgroup.html it will give you two choices to click on. The first being the caregivers group which you are now in, the second being the caringspouses group. Click on that and join as you did this group...atleast that is what I believe. I am not a member there, yet understand it is the same admission type entry as this group. Please let us know if this works and/or if you need more help. Best of luck navigating... Sandie and -- 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 8, 2005 Report Share Posted March 8, 2005 The spousal Group did more complaining than this group. Also more anger showed and they were not asd good as far as experiences with various drugs etc. You may like it so it is worth a try. Simmel > >Reply-To: LBDcaregivers >To: <LBDcaregivers > >Subject: RE: New to all this/ Hope >Date: Tue, 8 Mar 2005 16:26:20 -0600 (Central Standard Time) > > >Hope- > >If you click on this link >http://www.lewybodydementia.org/emailgroup.html >it will give you two choices to click on. The first being >the caregivers group which you are now in, the second >being the caringspouses group. Click on that and join >as you did this group...atleast that is what I believe. I >am not a member there, yet understand it is the same >admission type entry as this group. > >Please let us know if this works and/or if you need more >help. > >Best of luck navigating... > >Sandie and > >-- 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...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.