Guest guest Posted November 2, 2006 Report Share Posted November 2, 2006 Hi Everyone, I haven't been around, been recuperating from my surgery, feeling better now. I sent my Mother's Doctor an email regarding a PET Scan and assisted living that I have been looking into and this was her EXACT response tonight via email... First of all, not everyone agrees that Lewy body dementia is a diagnosis so it is not clear to me that either the treatment or prognosis is well-defined. So I definitely would not order a PET scan myself because I don't know what to do with the result, other than what we have already tried. If the exelon has been tolerated well, we can try raising the dose. If you would like her to have more evaluation, then she should be seen by a neurologist, which I would be happy to arrange. That specialist could answer more of your questions and decide if it would make a difference to do the scan. The decision to move to assisted living is not based upon whether or not she has LBD; it is based upon whether she is safe at home. The assisted living staff can do a formal evaluation and see if she is appropriate; her cardiac status is stable, so it really depends on whether they ahve the dementia unit capability - if they do then that should be a very appropriate facility for her, rather than a nursing home. So let me know about the neurologist. END That is what she wrote word for word. Does anyone have any thoughts about it? I had told her basically in my email that I wanted to find out with a PET scan if she has LBD for sure and told her that others had the test...I told her I was tired of guessing and needed to know for future decisions...etc...her diagnosis prior to this email has been Severe Dementia with possible Lewy Body... Thanks so much, Carol Incognito Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2006 Report Share Posted November 2, 2006 Dear Imogene, I am so sorry to hear that your husband is having such difficulties. I have been reading the boards and keeping up with everyone, just was not able to sit and type. Hoping he will have many more good days ahead... That first sentence the Doctor wrote that not everyone agrees that lewy body dementia is a DX just floored me and sent me over the edge tonight...I wrote back and did tell her to write up a referral for a neurologist...which I asked for last month and she replied we did not need...I put her feet to the fire with yesterday's email telling her I needed to find out if in fact my Mom did have LBD and that I was making it my next job..So now she is offering up the neurologist...which i will do and see where that goes...On the Lewy Body Site some of the LO's have said they had PET scans done and that they show Lewy Bodies present...so, I'm a little confused...I will see what they say in Boston which is where we will go... Thanks for your suggestion. You are doing a great job with your husband, I can tell how much you love him. He is a lucky man. My best, Carol Incognito > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2006 Report Share Posted November 3, 2006 Carol, far be it for me to know for sure, but I will be interested in what your Neurologist has to say about the PET scan. I have never had one so I don't know about them. I know the MRI is VERY good, but have been told that just because they see damage, doesn't mean they know exactly what causes the damage. They can make and educated guess, along with all the other testing they have done and come up with a pretty good diagnosis. Just like you already know it is LBD just from symptoms, that is how they know. Just by putting a lot of pieces together to come up with a far more educated picture than we make, and we make a pretty good guess. I will be interested to know what your new doctor will say. Best to you. Mercy what a doctor you have there. Whew! It was like my SIL she told the doctor she had breast cancer. She went back like he said at least three time, and she finally told him it was hurting under her arm. He said cancer doesn't hurt, so it isn't cancer. In less than a year she was dead in her early forties. Bad advise can kill. But, you are a smart girl, and will get better advise for your LO. Good for you! You go girl! Imogene In a message dated 11/3/2006 4:43:51 AM Central Standard Time, carol.incognito@... writes: Dear Imogene, I am so sorry to hear that your husband is having such difficulties. I have been reading the boards and keeping up with everyone, just was not able to sit and type. Hoping he will have many more good days ahead... That first sentence the Doctor wrote that not everyone agrees that lewy body dementia is a DX just floored me and sent me over the edge tonight...I wrote back and did tell her to write up a referral for a neurologist.neurologist.<WBR>..which I asked for last month and she replie need...I put her feet to the fire with yesterday's email telling her I needed to find out if in fact my Mom did have LBD and that I was making it my next job..So now she is offering up the neurologist.neurologist.<WBR>..which i will do and see where that goes.. Body Site some of the LO's have said they had PET scans done and that they show Lewy Bodies present...so, I'm a little confused...I will see what they say in Boston which is where we will go... Thanks for your suggestion. You are doing a great job with your husband, I can tell how much you love him. He is a lucky man. My best, Carol Incognito > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2006 Report Share Posted November 3, 2006 Good Morning Carol. The only way you can get a definite diagnosis is through autopsy or biopsy of the brain. All the other tests out there is a 'process of elimination' way to see if our LOs have LBD or not. My mother's PET scan didn't give any useful information at all. The only reason we knew that she had definite LBD was because she had a brain biopsy in February b/c her Neurologist wanted to see if she had a treatable form of dementia due to her rapid decline (as it turned out from the biopsy, she did not have a treatable form of dementia but LBD b/c they found lewy bodies throughout + in my opinion (and after the fact, her neurologist agreed) the rapid decline was due to the Respiridone she received while being observed in a hospital -- after 3 weeks on Respiridone she went from being self-sufficient to needing 24/7 care in a NH as well as being put in a wheelchair... I do feel that your mother's doctor seems open -- considering she took the time to email you. I would suggest your emailing her the information from Dr. Bradley Boeve. He certainly knows LBD and he comes with great credentials to make your mother's doctor want to listen (Associate Professor of Neurology Division of Behavioral Neurology and Sleep Disorders Center Department of Neurology Mayo Clinic College of Medicine, Rochester, MN) Go to the page below and click the link at the bottom. It's about 33 pages long, but gives very useful information re: what medications work best for LBD: http://www.lewybodydementia.org/Boevelink.php Good Luck! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2006 Report Share Posted November 3, 2006 Carol: You are being referred to a neurologist. Go and then see what that doctor wants you to do about the PET scan. Most insurance will not pay for a PET scan. Myrna (68) in Missouri Caregiver for Husband Jerry (71) Diagnosed AD 1997, LBD 2004 NEED YOUR OPINIONS!!! Hi Everyone, I haven't been around, been recuperating from my surgery, feeling better now. I sent my Mother's Doctor an email regarding a PET Scan and assisted living that I have been looking into and this was her EXACT response tonight via email... First of all, not everyone agrees that Lewy body dementia is a diagnosis so it is not clear to me that either the treatment or prognosis is well-defined. So I definitely would not order a PET scan myself because I don't know what to do with the result, other than what we have already tried. If the exelon has been tolerated well, we can try raising the dose. If you would like her to have more evaluation, then she should be seen by a neurologist, which I would be happy to arrange. That specialist could answer more of your questions and decide if it would make a difference to do the scan. The decision to move to assisted living is not based upon whether or not she has LBD; it is based upon whether she is safe at home. The assisted living staff can do a formal evaluation and see if she is appropriate; her cardiac status is stable, so it really depends on whether they ahve the dementia unit capability - if they do then that should be a very appropriate facility for her, rather than a nursing home. So let me know about the neurologist. END That is what she wrote word for word. Does anyone have any thoughts about it? I had told her basically in my email that I wanted to find out with a PET scan if she has LBD for sure and told her that others had the test...I told her I was tired of guessing and needed to know for future decisions...etc...her diagnosis prior to this email has been Severe Dementia with possible Lewy Body... Thanks so much, Carol Incognito Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2006 Report Share Posted November 3, 2006 Carol, We recently went to a Geriatric Neurologist at the Baylor College of Medicine because I too want a definite DX. The neurologist we had been seeing would only say " some kind of dementia " , and also seemed to think it didn't really matter what kind. I totally disagree, because we need to now what is coming in the future to TRY to prepare for it. The Geriatric Neuro had a complete neuro-psych test run (that took all day), and we had a PET scan run last week. He told us that the PET scan can identify Lewy Bodies if present. His initial opinion before the tests was Vascular Dementia with possible Lewy Bodies. The PET scan will also show if it is Vascular Dementia. So good luck on your " next job " of finding a Dr. who knows about all the different types of Dementia, including LBD. We are going next week to get the results of all the tests. Any DX will be better than being in the dark about the days to come. " carol.incognito " wrote: Dear Imogene, I am so sorry to hear that your husband is having such difficulties. I have been reading the boards and keeping up with everyone, just was not able to sit and type. Hoping he will have many more good days ahead... That first sentence the Doctor wrote that not everyone agrees that lewy body dementia is a DX just floored me and sent me over the edge tonight...I wrote back and did tell her to write up a referral for a neurologist...which I asked for last month and she replied we did not need...I put her feet to the fire with yesterday's email telling her I needed to find out if in fact my Mom did have LBD and that I was making it my next job..So now she is offering up the neurologist...which i will do and see where that goes...On the Lewy Body Site some of the LO's have said they had PET scans done and that they show Lewy Bodies present...so, I'm a little confused...I will see what they say in Boston which is where we will go... Thanks for your suggestion. You are doing a great job with your husband, I can tell how much you love him. He is a lucky man. My best, Carol Incognito > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2006 Report Share Posted November 3, 2006 Maybe I need to do some more research. I have never heard of a PET Scan identifying a dementia. Thanks for your information, . I will certainly look into this further. I sure wish I had known yesterday, and questioned our Doctor. Well--- I just stopped and called him. He said that a PET scan is used in research study, but is not something used everyday, because all the test identify the illness, and the PET scan will not change the treatment. It is injecting dye into the patient that binds to certain proteins. So yes, it can identify LBD, but as a clinical study in research. he stressed it was in research. He said it is not necessary in identifying the dementia, because the Doctor can do that. NO, I guess it's not necessary when you have an excellent doctor as we have. We have never felt more secure than we do with our Doctor. The first one we had was horrible, though. Imogene In a message dated 11/3/2006 9:51:05 AM Central Standard Time, jenniferlynnebrock@... writes: Carol, We recently went to a Geriatric Neurologist at the Baylor College of Medicine because I too want a definite DX. The neurologist we had been seeing would only say " some kind of dementia " , and also seemed to think it didn't really matter what kind. I totally disagree, because we need to now what is coming in the future to TRY to prepare for it. The Geriatric Neuro had a complete neuro-psych test run (that took all day), and we had a PET scan run last week. He told us that the PET scan can identify Lewy Bodies if present. His initial opinion before the tests was Vascular Dementia with possible Lewy Bodies. The PET scan will also show if it is Vascular Dementia. So good luck on your " next job " of finding a Dr. who knows about all the different types of Dementia, including LBD. We are going next week to get the results of all the tests. Any DX will be better than being in the dark about the days to come. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2006 Report Share Posted November 3, 2006 > >Dear , Thanks for the suggestion of Dr. Boeve's letter. I already have it printed out and have it in a packet to hand to her, along with other articles, when I see her next visit. I am not able to email attachments to her through the site. I am still confused about the PET scan not showing lewy bodies because other caregivers have said the opposite. I will just wait and see what the neurologist says when we see him. Who knows, maybe I'll get a completely different answer as to what can be seen with a PET scan!!! Thanks for the help and advice, Diane Good Morning Carol. > > The only way you can get a definite diagnosis is through autopsy or > biopsy of the brain. All the other tests out there is a 'process of > elimination' way to see if our LOs have LBD or not. > > My mother's PET scan didn't give any useful information at all. The > only reason we knew that she had definite LBD was because she had a > brain biopsy in February b/c her Neurologist wanted to see if she had > a treatable form of dementia due to her rapid decline (as it turned > out from the biopsy, she did not have a treatable form of dementia > but LBD b/c they found lewy bodies throughout + in my opinion (and > after the fact, her neurologist agreed) the rapid decline was due to > the Respiridone she received while being observed in a hospital -- > after 3 weeks on Respiridone she went from being self-sufficient to > needing 24/7 care in a NH as well as being put in a wheelchair... > > I do feel that your mother's doctor seems open -- considering she > took the time to email you. I would suggest your emailing her the > information from Dr. Bradley Boeve. He certainly knows LBD and he > comes with great credentials to make your mother's doctor want to > listen (Associate Professor of Neurology Division of Behavioral > Neurology and Sleep Disorders Center Department of Neurology > Mayo Clinic College of Medicine, Rochester, MN) > > Go to the page below and click the link at the bottom. It's about 33 > pages long, but gives very useful information re: what medications > work best for LBD: > http://www.lewybodydementia.org/Boevelink.php > > Good Luck! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2006 Report Share Posted November 3, 2006 Hi Myrna, Yes, I plan on seeing the neurologist and hear him out..don't have many other options at this point. :-( Thanks, Carol Incognito > > Carol: You are being referred to a neurologist. Go and then see what that doctor wants you to do about the PET scan. Most insurance will not pay for a PET scan. > Myrna (68) in Missouri > Caregiver for Husband Jerry (71) > Diagnosed AD 1997, LBD 2004 > > NEED YOUR OPINIONS!!! > > > Hi Everyone, > I haven't been around, been recuperating from my surgery, feeling > better now. > I sent my Mother's Doctor an email regarding a PET Scan and assisted > living that I have been looking into and this was her EXACT response > tonight via email... > > First of all, not everyone agrees that Lewy body dementia is a > diagnosis so it is not clear to me that either the treatment or > prognosis is well-defined. So I definitely would not order a PET > scan myself because I don't know what to do with the result, other > than what we have already tried. If the exelon has been tolerated > well, we can try raising the dose. > > If you would like her to have more evaluation, then she should be > seen by a neurologist, which I would be happy to arrange. That > specialist could answer more of your questions and decide if it would > make a difference to do the scan. > > The decision to move to assisted living is not based upon whether or > not she has LBD; it is based upon whether she is safe at home. The > assisted living staff can do a formal evaluation and see if she is > appropriate; her cardiac status is stable, so it really depends on > whether they ahve the dementia unit capability - if they do then that > should be a very appropriate facility for her, rather than a nursing > home. > > So let me know about the neurologist. END > > That is what she wrote word for word. Does anyone have any thoughts > about it? I had told her basically in my email that I wanted to > find out with a PET scan if she has LBD for sure and told her that > others had the test...I told her I was tired of guessing and needed > to know for future decisions...etc...her diagnosis prior to this > email has been Severe Dementia with possible Lewy Body... > Thanks so much, > Carol Incognito > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2006 Report Share Posted November 3, 2006 Hi , I hope you get some good news with the PET scan. I know you from the Lewy Body Site and had read your post about the PET scan going to done, etc. This is why I am so confused as to others saying that a PET scan does not show lewy bodies. I will be real curious as to what they say to you. It is very difficult to make decisions and know what to do if you don't even have a diagnosis. For 6 years they said my Mom's was also vascular dementia and only recent, after I brought it up to her doctor and brought her LBD information, did she now change it to severe dementia with possible lewy body. I know Doctors don't know everything, but if they don't know something, just say so and refer to hopefully one that knows more. Thanks for taking the time to respond amidst all your running around and hard work. It is a difficult time for you. Hopefully, you will get a big negative on the LBD. My best, Carol Incognito/Diane Hill > Dear Imogene, > I am so sorry to hear that your husband is having such difficulties. > I have been reading the boards and keeping up with everyone, just was > not able to sit and type. Hoping he will have many more good days > ahead... > > That first sentence the Doctor wrote that not everyone agrees that > lewy body dementia is a DX just floored me and sent me over the edge > tonight...I wrote back and did tell her to write up a referral for a > neurologist...which I asked for last month and she replied we did not > need...I put her feet to the fire with yesterday's email telling her > I needed to find out if in fact my Mom did have LBD and that I was > making it my next job..So now she is offering up the > neurologist...which i will do and see where that goes...On the Lewy > Body Site some of the LO's have said they had PET scans done and that > they show Lewy Bodies present...so, I'm a little confused...I will > see what they say in Boston which is where we will go... > > Thanks for your suggestion. You are doing a great job with your > husband, I can tell how much you love him. He is a lucky man. > My best, > Carol Incognito > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2006 Report Share Posted November 3, 2006 Hi Imogene, Hope you are having a good day with Don today. I know how the days can change from one minute to the next. You just never can be sure wht to expect. I guess we just have to really enjoy the precious moments we get with them when they are not frustrated and suffering. I will be very curious to see what the neurologist says also. I might have to go down to jennifer's neurologist at Baylor. Did you read 's post? This is the confusing part, when you get different answers from different doctors. Maybe they are all guessing... If there's a way to find out, I will find out...the unknown is just too much for me, unless I have no other options. Thanks for the encouragement and I will keep you posted...meanwhile, you take care of yourself and don't worry so much about the house. Like I always say, it will be here long after I am gone. At this point, I just aim for tidy and clean and that's good enough for me. :-) Thanks and take care, Carol Incognito > > > Carol, far be it for me to know for sure, but I will be interested in what > your Neurologist has to say about the PET scan. I have never had one so I > don't know about them. I know the MRI is VERY good, but have been told that just > because they see damage, doesn't mean they know exactly what causes the > damage. They can make and educated guess, along with all the other testing they > have done and come up with a pretty good diagnosis. Just like you already know > it is LBD just from symptoms, that is how they know. Just by putting a lot of > pieces together to come up with a far more educated picture than we make, and > we make a pretty good guess. > I will be interested to know what your new doctor will say. > > Best to you. Mercy what a doctor you have there. Whew! It was like my SIL > she told the doctor she had breast cancer. She went back like he said at least > three time, and she finally told him it was hurting under her arm. He said > cancer doesn't hurt, so it isn't cancer. In less than a year she was dead in > her early forties. Bad advise can kill. But, you are a smart girl, and will get > better advise for your LO. Good for you! You go girl! > Imogene > > > > In a message dated 11/3/2006 4:43:51 AM Central Standard Time, > carol.incognito@... writes: > > > > > Dear Imogene, > I am so sorry to hear that your husband is having such difficulties. > I have been reading the boards and keeping up with everyone, just was > not able to sit and type. Hoping he will have many more good days > ahead... > > That first sentence the Doctor wrote that not everyone agrees that > lewy body dementia is a DX just floored me and sent me over the edge > tonight...I wrote back and did tell her to write up a referral for a > neurologist.neurologist.<WBR>..which I asked for last month and she replie > need...I put her feet to the fire with yesterday's email telling her > I needed to find out if in fact my Mom did have LBD and that I was > making it my next job..So now she is offering up the > neurologist.neurologist.<WBR>..which i will do and see where that goes.. > Body Site some of the LO's have said they had PET scans done and that > they show Lewy Bodies present...so, I'm a little confused...I will > see what they say in Boston which is where we will go... > > Thanks for your suggestion. You are doing a great job with your > husband, I can tell how much you love him. He is a lucky man. > My best, > Carol Incognito > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2006 Report Share Posted November 3, 2006 Dear Imogene, Well, I'm glad that you could finally give an answer that I can answer and that makes sense. If it is just for research, I " m sure most insurance companies or medicare will probably not pay for it. That makes sense. From everything you said, I guess the most important thing is to find a good doctor that has knowledge of LBD and will more than likely be able to make the DX jast as in the case of your Don. I will go along with that and be satisfied. I don't even want to put my Mom through such a test. I did not know it was intrusive with dye. I don't want that. My Mom's Doctor sent me another email this afternoon after I told her to get me the referral for the neurologist saying, " Are you sure you really want to put her through going to see a neurologist? " I wrote back and asked her why she sounds so against it and I am awaiting her reply... I could go in and talk to the Doctor and have a consultation with my diary on Mom and she could probably DX it right then...just as most of us on site have done. Maybe it's me and I go into this denial mode. I think my biggest problem in accepting LBD 100% is that it has been 6+ years and she has problems, for sure, but she is still living alone and does not seem to have a lot of the severe problems I read about on site. And it has not happened quickly. Am I just lucky or does she not have LBD? That is my dilemma!!! Well, thanks for your time Imogene...and I hope tonight will be calm with Don. Thanks, Carol Incognito > > > Maybe I need to do some more research. I have never heard of a PET Scan > identifying a dementia. Thanks for your information, . I will certainly > look into this further. I sure wish I had known yesterday, and questioned our > Doctor. > > Well--- I just stopped and called him. He said that a PET scan is used in > research study, but is not something used everyday, because all the test > identify the illness, and the PET scan will not change the treatment. It is > injecting dye into the patient that binds to certain proteins. So yes, it can > identify LBD, but as a clinical study in research. he stressed it was in research. > > He said it is not necessary in identifying the dementia, because the Doctor > can do that. NO, I guess it's not necessary when you have an excellent doctor > as we have. We have never felt more secure than we do with our Doctor. The > first one we had was horrible, though. > Imogene > > > > In a message dated 11/3/2006 9:51:05 AM Central Standard Time, > jenniferlynnebrock@... writes: > > > > > Carol, > We recently went to a Geriatric Neurologist at the Baylor College of > Medicine because I too want a definite DX. The neurologist we had been seeing would > only say " some kind of dementia " , and also seemed to think it didn't really > matter what kind. I totally disagree, because we need to now what is coming in > the future to TRY to prepare for it. The Geriatric Neuro had a complete > neuro-psych test run (that took all day), and we had a PET scan run last week. He > told us that the PET scan can identify Lewy Bodies if present. His initial > opinion before the tests was Vascular Dementia with possible Lewy Bodies. The > PET scan will also show if it is Vascular Dementia. > So good luck on your " next job " of finding a Dr. who knows about all the > different types of Dementia, including LBD. We are going next week to get the > results of all the tests. Any DX will be better than being in the dark about > the days to come. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2006 Report Share Posted November 3, 2006 Hi Imogene, It's me again..I no sooner sent the last post to you when I received an email from the doctor. This is what she wrote: " It is not a bad idea at all and I think it is often very helpful support for families. Dr. Fong is very good. I am just alerting you that it means travelling into Boston a few times. Call them on Monday and let me know if you need my help. " By the way, Dr. Fong is at the Beth Israel in Boston which is a teaching Hospital with Harvard... That was in response to my writing back to her today asking her if she thought the testing was a bad idea. That was the impression she had given. so, that's that...I'll call Monday and take it from there. Carol Incog > > > Maybe I need to do some more research. I have never heard of a PET Scan > identifying a dementia. Thanks for your information, . I will certainly > look into this further. I sure wish I had known yesterday, and questioned our > Doctor. > > Well--- I just stopped and called him. He said that a PET scan is used in > research study, but is not something used everyday, because all the test > identify the illness, and the PET scan will not change the treatment. It is > injecting dye into the patient that binds to certain proteins. So yes, it can > identify LBD, but as a clinical study in research. he stressed it was in research. > > He said it is not necessary in identifying the dementia, because the Doctor > can do that. NO, I guess it's not necessary when you have an excellent doctor > as we have. We have never felt more secure than we do with our Doctor. The > first one we had was horrible, though. > Imogene > > > > In a message dated 11/3/2006 9:51:05 AM Central Standard Time, > jenniferlynnebrock@... writes: > > > > > Carol, > We recently went to a Geriatric Neurologist at the Baylor College of > Medicine because I too want a definite DX. The neurologist we had been seeing would > only say " some kind of dementia " , and also seemed to think it didn't really > matter what kind. I totally disagree, because we need to now what is coming in > the future to TRY to prepare for it. The Geriatric Neuro had a complete > neuro-psych test run (that took all day), and we had a PET scan run last week. He > told us that the PET scan can identify Lewy Bodies if present. His initial > opinion before the tests was Vascular Dementia with possible Lewy Bodies. The > PET scan will also show if it is Vascular Dementia. > So good luck on your " next job " of finding a Dr. who knows about all the > different types of Dementia, including LBD. We are going next week to get the > results of all the tests. Any DX will be better than being in the dark about > the days to come. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2006 Report Share Posted November 3, 2006 My husband had a PET scan..I had them download the PET scan and the other tests (MRI) etc...that they did on and now have the disc at home...I also go to the records room ad get copies of all his records after each hospital stay..mind you he has been in several hospitals but we finally found the right one for us and he only goes there now..... Re: Re: NEED YOUR OPINIONS!!! Maybe I need to do some more research. I have never heard of a PET Scan identifying a dementia. Thanks for your information, . I will certainly look into this further. I sure wish I had known yesterday, and questioned our Doctor. Well--- I just stopped and called him. He said that a PET scan is used in research study, but is not something used everyday, because all the test identify the illness, and the PET scan will not change the treatment. It is injecting dye into the patient that binds to certain proteins. So yes, it can identify LBD, but as a clinical study in research. he stressed it was in research. He said it is not necessary in identifying the dementia, because the Doctor can do that. NO, I guess it's not necessary when you have an excellent doctor as we have. We have never felt more secure than we do with our Doctor. The first one we had was horrible, though. Imogene In a message dated 11/3/2006 9:51:05 AM Central Standard Time, jenniferlynnebrock@ yahoo.com writes: Carol, We recently went to a Geriatric Neurologist at the Baylor College of Medicine because I too want a definite DX. The neurologist we had been seeing would only say " some kind of dementia " , and also seemed to think it didn't really matter what kind. I totally disagree, because we need to now what is coming in the future to TRY to prepare for it. The Geriatric Neuro had a complete neuro-psych test run (that took all day), and we had a PET scan run last week. He told us that the PET scan can identify Lewy Bodies if present. His initial opinion before the tests was Vascular Dementia with possible Lewy Bodies. The PET scan will also show if it is Vascular Dementia. So good luck on your " next job " of finding a Dr. who knows about all the different types of Dementia, including LBD. We are going next week to get the results of all the tests. Any DX will be better than being in the dark about the days to come. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2006 Report Share Posted November 3, 2006 Hi Sharon, Yeah, it is both feet that do it, I guess what is called the shuffle...What does the bar of soap do? She has a keen nose for smells...she hates smells and would never go for any smells in the bed...lol That's interesting that the charly horses is part of this also. I was wondering why she was having so many of them recently...now I know...it's probably LBD...hmmm another light goes off....I need a 1000 watt spotlight to hit me in the eyeballs to finally accept it, I guess.... :-) Carol > > > > > > Carol, you need a good doctor!!!!! It is not you! > > > > Get another opinion with one that knows. If you are not sure about > doctors, > > then try a third. We have been around doctors many, many years, so > we can > > pretty well " read " them, but someone that hasn't may need to get > more than one > > or two opinions. > > > > When a doctor questions the need for you to see a Doctor for your > Mom's > > problems, I would suspect that doctor of being afraid of loosing a > patient, and > > credibility. I would suspect, period! That is twice now that she > has thrown > > objections in your path. Don't let her throw you. That is exactly > what she is > > trying to do. Most Doctors are glad for you to seek another > opinion. I > > wouldn't go back to her. > > > > Take your diary to your own Neurologist, not a referal, (our > referal was > > horrible. We found our own) and ask for a mini test, and give him > your diary. > > Don't suggest any ailment. Let him tell you. > > > > You have learned enough by now to know that an LBD patient is > lucid as you > > or me one minute and not so the next, or the next day. That is why > your Mom > > has lived alone for so long. > > What shape are her finances in? The ability to " keep the books " is > one thing > > that goes early on. Did she have hallucinations early on? Of > course you > > wouldn't know if she was alone. She may not have told you. Nor > that she was > > putting on " showtime " when you were around or on the phone. Has > her decline been > > gradual and steady, or up and down, so that you think she is > normal, and then > > the next time you turn around she isn't? > > > > Grandual steady decline usually means Alzheimer's with the first > thing to > > show being memory loss. LBD usually has almost intact memory. But, > they can't > > figure things out for themselves. They loose the ability to do > jobs or chores > > they have done all their lives. Cognitive problems is an LBD > hallmark. > > > > Again, ask the Neurologist or Geriatric/Psychiatrist (which we > have) to give > > only the mini test, and to use your notes. That should keep your > mother from > > a battery of all day testing that will wear her out. > > > > Is your Mom's doctor an accredited Neurologist or > Geriatric/Psychologist? Or > > is she just an MD? Don't go to her for mental problems if she > isn't one or > > the other beside an MD. > > > > What are some of your Mom's symptoms? My husband on my looking > back, has had > > problems since 1995. That is a long time, but his first sign was > not being > > able to work with figure back then. > > > > It took years for it to develop into full blown LBD. Now without a > shadow of > > a doubt I know he has LBD. But, you see how long it took for me to > even > > realize there was a problem? His first hallucination when he was > awake told me > > something was wrong, and also because he couldn't do jobs that he > had always > > done. He couldn't figure out how to do them. Does your Mom see > things? People > > or animals? Not necessarily scary, but just there. > > > > I'll let you alone for a while, but I so want to help if at all > possible, > > Imogene > > > > > > > > In a message dated 11/3/2006 6:01:47 PM Central Standard Time, > > carol.incognito@ writes: > > > > > > > > > > Dear Imogene, > > Well, I'm glad that you could finally give an answer that I can > > answer and that makes sense. If it is just for research, I " m sure > > most insurance companies or medicare will probably not pay for it. > > That makes sense. > > > > From everything you said, I guess the most important thing is to > find > > a good doctor that has knowledge of LBD and will more than likely > be > > able to make the DX jast as in the case of your Don. I will go > along > > with that and be satisfied. I don't even want to put my Mom > through > > such a test. I did not know it was intrusive with dye. I don't > want > > that. > > > > My Mom's Doctor sent me another email this afternoon after I told > her > > to get me the referral for the neurologist saying, " Are you sure > you > > really want to put her through going to see a neurologist?really > wan > > back and asked her why she sounds so against it and I am awaiting > her > > reply... > > I could go in and talk to the Doctor and have a consultation with > my > > diary on Mom and she could probably DX it right then...just as > most > > of us on site have done. Maybe it's me and I go into this denial > > mode. I think my biggest problem in accepting LBD 100% is that it > > has been 6+ years and she has problems, for sure, but she is still > > living alone and does not seem to have a lot of the severe problems > I > > read about on site. And it has not happened quickly. Am I just > > lucky or does she not have LBD? That is my dilemma!!! > > > > Well, thanks for your time Imogene...and I hope tonight will be > calm > > with Don. > > Thanks, > > Carol Incognito > > > > --- In _LBDcaregivers@LBDcaregiverLBD_ > (mailto:LBDcaregivers ) > > , Iward27663@, Iwa > > > > > > > > > Maybe I need to do some more research. I have never heard of a > PET > > Scan > > > identifying a dementia. Thanks for your information, . I > > will certainly > > > look into this further. I sure wish I had known yesterday, and > > questioned our > > > Doctor. > > > > > > Well--- I just stopped and called him. He said that a PET scan > is > > used in > > > research study, but is not something used everyday, because all > the > > test > > > identify the illness, and the PET scan will not change the > > treatment. It is > > > injecting dye into the patient that binds to certain proteins. > So > > yes, it can > > > identify LBD, but as a clinical study in research. he stressed > it > > was in research. > > > > > > He said it is not necessary in identifying the dementia, because > > the Doctor > > > can do that. NO, I guess it's not necessary when you have an > > excellent doctor > > > as we have. We have never felt more secure than we do with our > > Doctor. The > > > first one we had was horrible, though. > > > Imogene > > > > > > > > > > > > In a message dated 11/3/2006 9:51:05 AM Central Standard Time, > > > jenniferlynnebrock@ jenniferly > > > > > > > > > > > > > > > Carol, > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2006 Report Share Posted November 4, 2006 Dear Dann, That is very interesting about the treadmill...I cannot picture my mother on one though. :-) Heavens to Betsy, I have to laugh at just the thought of it. She can not walk and can't walk for long without problems with her heart...she has CHF and atrial fibrilation and the slightest thing and her heart starts racing...and thumping... I wish she could exercise but she does try to walk around the apartment when she is having good days...she is able to hold on, at least it's movement, besides sitting... Thank God your Mom was able to do the treadmill and the replacement worked out so well...that was terrific...but it could never happen here.. My best Dann Carol Incog > > > > > > > > Carol, you need a good doctor!!!!! It is not you! > > > > Get another opinion with one that knows. If you are not sure about > doctors, > > then try a third. We have been around doctors many, many years, so > we can > > pretty well " read " them, but someone that hasn't may need to get > more than one > > or two opinions. > > > > When a doctor questions the need for you to see a Doctor for your > Mom's > > problems, I would suspect that doctor of being afraid of loosing a > patient, and > > credibility. I would suspect, period! That is twice now that she > has thrown > > objections in your path. Don't let her throw you. That is exactly > what she is > > trying to do. Most Doctors are glad for you to seek another > opinion. I > > wouldn't go back to her. > > > > Take your diary to your own Neurologist, not a referal, (our > referal was > > horrible. We found our own) and ask for a mini test, and give him > your diary. > > Don't suggest any ailment. Let him tell you. > > > > You have learned enough by now to know that an LBD patient is > lucid as you > > or me one minute and not so the next, or the next day. That is why > your Mom > > has lived alone for so long. > > What shape are her finances in? The ability to " keep the books " is > one thing > > that goes early on. Did she have hallucinations early on? Of > course you > > wouldn't know if she was alone. She may not have told you. Nor > that she was > > putting on " showtime " when you were around or on the phone. Has > her decline been > > gradual and steady, or up and down, so that you think she is > normal, and then > > the next time you turn around she isn't? > > > > Grandual steady decline usually means Alzheimer's with the first > thing to > > show being memory loss. LBD usually has almost intact memory. But, > they can't > > figure things out for themselves. They loose the ability to do > jobs or chores > > they have done all their lives. Cognitive problems is an LBD > hallmark. > > > > Again, ask the Neurologist or Geriatric/Psychiatrist (which we > have) to give > > only the mini test, and to use your notes. That should keep your > mother from > > a battery of all day testing that will wear her out. > > > > Is your Mom's doctor an accredited Neurologist or > Geriatric/Psychologist? Or > > is she just an MD? Don't go to her for mental problems if she > isn't one or > > the other beside an MD. > > > > What are some of your Mom's symptoms? My husband on my looking > back, has had > > problems since 1995. That is a long time, but his first sign was > not being > > able to work with figure back then. > > > > It took years for it to develop into full blown LBD. Now without a > shadow of > > a doubt I know he has LBD. But, you see how long it took for me to > even > > realize there was a problem? His first hallucination when he was > awake told me > > something was wrong, and also because he couldn't do jobs that he > had always > > done. He couldn't figure out how to do them. Does your Mom see > things? People > > or animals? Not necessarily scary, but just there. > > > > I'll let you alone for a while, but I so want to help if at all > possible, > > Imogene > > > > > > > > In a message dated 11/3/2006 6:01:47 PM Central Standard Time, > > carol.incognito@ writes: > > > > > > > > > > Dear Imogene, > > Well, I'm glad that you could finally give an answer that I can > > answer and that makes sense. If it is just for research, I " m sure > > most insurance companies or medicare will probably not pay for it. > > That makes sense. > > > > From everything you said, I guess the most important thing is to > find > > a good doctor that has knowledge of LBD and will more than likely > be > > able to make the DX jast as in the case of your Don. I will go > along > > with that and be satisfied. I don't even want to put my Mom > through > > such a test. I did not know it was intrusive with dye. I don't > want > > that. > > > > My Mom's Doctor sent me another email this afternoon after I told > her > > to get me the referral for the neurologist saying, " Are you sure > you > > really want to put her through going to see a neurologist?really > wan > > back and asked her why she sounds so against it and I am awaiting > her > > reply... > > I could go in and talk to the Doctor and have a consultation with > my > > diary on Mom and she could probably DX it right then...just as > most > > of us on site have done. Maybe it's me and I go into this denial > > mode. I think my biggest problem in accepting LBD 100% is that it > > has been 6+ years and she has problems, for sure, but she is still > > living alone and does not seem to have a lot of the severe problems > I > > read about on site. And it has not happened quickly. Am I just > > lucky or does she not have LBD? That is my dilemma!!! > > > > Well, thanks for your time Imogene...and I hope tonight will be > calm > > with Don. > > Thanks, > > Carol Incognito > > > > --- In _LBDcaregivers@LBDcaregiverLBD_ > (mailto:LBDcaregivers ) > > , Iward27663@, Iwa > > > > > > > > > Maybe I need to do some more research. I have never heard of a > PET > > Scan > > > identifying a dementia. Thanks for your information, . I > > will certainly > > > look into this further. I sure wish I had known yesterday, and > > questioned our > > > Doctor. > > > > > > Well--- I just stopped and called him. He said that a PET scan > is > > used in > > > research study, but is not something used everyday, because all > the > > test > > > identify the illness, and the PET scan will not change the > > treatment. It is > > > injecting dye into the patient that binds to certain proteins. > So > > yes, it can > > > identify LBD, but as a clinical study in research. he stressed > it > > was in research. > > > > > > He said it is not necessary in identifying the dementia, because > > the Doctor > > > can do that. NO, I guess it's not necessary when you have an > > excellent doctor > > > as we have. We have never felt more secure than we do with our > > Doctor. The > > > first one we had was horrible, though. > > > Imogene > > > > > > > > > > > > In a message dated 11/3/2006 9:51:05 AM Central Standard Time, > > > jenniferlynnebrock@ jenniferly > > > > > > > > > > > > > > > Carol, > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2006 Report Share Posted November 5, 2006 Hi , yes, Risperdal led to a lot of chest pain that almost got him in the hospital a couple of times. He has a bad heart already and didn't need that. I took him off the medicine. My new doctor commended me for knowing to do that. I didn't know to do that. I just knew my husband, and it was killing him, slowly but surely. He also became a Zombie that could hardly talk. Not anymore. I have learned about LBD and Antipsychotics. Imogene In a message dated 11/4/2006 11:59:54 AM Central Standard Time, ljrob09@... writes: Hi Carol, In reading that your mother has CHF, I would offer an extra word of caution in using any of the " antipsychotics " caution in using any of the personal opinion, but with my dad and from reading Imogene's postings, I think these types of drugs lead to an increased occurence of " heart " events. Daughter of Bill, 91 Quote Link to comment Share on other sites More sharing options...
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