Guest guest Posted September 6, 2011 Report Share Posted September 6, 2011 Hi , I'm so very sorry you and your wife are having to deal with anything like LBD. I'm not sure where she is being evaluated, but I would strongly suggest she be thoroughly evaluated at a Memory Clinic. There are many across the united states and Canada and they are well versed in diagnosing and distinguishing between other possible causes. We took my mother in law to the one in San Francisco, UCSF Memory and Aging Clinic, after many frustrating years of not fully understanding what we were dealing with. They provided a whole team approach to her evaluation and eventual diagnosis and a proactive plan for managing the illness and symptoms. They have been there for us when we needed additional help and understanding also. No doctor mentioned LBD to us though reading about various forms of dementia I thought it might be possible. Certainly I could see she had the stiffness and balance issues that could be Parkinson's. Here is a link to the a list of the memory centers in the united states (below). Most insurance is cooperative in covering an evaluation and the centers will be able to help with this also. I would suggest finding one close to you and calling to see if it's something you could manage. The doctors we saw at the one in SF were amazing - compassionate, well educated and up to date on neurology issues in general and dementia issues specifically and there are several psychiatrists on staff as well. My personal opinion about what you have written on 3 symptoms is there is nothing I have seen with people with this disease so far that is that cut and dry. There are variations I have seen personally and read about here in this support group and others. What I know tells me it is not really possible to have a diagnosis between those three based on those 3 things. Further, LBD is frequently (I hesitate to say always but from what I have seen it has been both) accompanied with Parkinson's or " Parkinsonism " and most LBD diagnosis I have seen have this noted in the dx. My mil has not had terrible hallucinations with LBD. She has had some disturbing and also interesting delusions. Others have had terrible hallucinations - like dead bodies and so on - just terrifying things. My mil used to sleep well through the night early in the disease. For the last three years however she rarely sleeps, when it's bedtime she perks up and wants to stay awake and yells " help me. " all night long endlessly. It's horrible and she's been doing it for over two years now. She has had the fluctuations in cognitive ability for at least 5 years and she does have good days and bad days - however she also has times that are more stable and instead of days had good weeks/months and bad weeks/months. And sometimes she gets into a groove and chugs along with it seeming somewhat stable for awhile then something else slips and she's wanting me to call and order what she saw them cooking on the television or tell her who that strange woman is that keeps wanting her to drink water and when can she go to her own room. She has always had walking problems (that is the Parkinson's part with her). She has cognitive difficulty in some things. Her reasoning ability was shot long ago. She does experience delusions with paranoia and gets into resulting panic attacks yelling and hyperventilating and seeming to be convinced something happened to her son but we aren't telling her, etc. I sure wish you all the luck to get a diagnosis and help you need. I'm so very sorry you and your wife are having to deal with this. This is a very helpful and compassionate support group and hope you will find what you need here. Dorothy Memory Centers/Clinics - United States http://alzheimersolutions.stores.yahoo.net/rescen.html From: LBDcaregivers [mailto:LBDcaregivers ] On Behalf Of gary.s.dale@... Sent: Monday, September 05, 2011 10:20 PM To: LBDcaregivers Subject: 3 main LBD symptoms I have read that these 3 symptoms are what separate LBD from PD and Alzheimer's: 1. patients have detailed and vivid Hallucinations early in the disease. 2. people with LBD show marked fluctuations in their cognitive functioning- sometimes referred to as 'good days' 'bad days'. 3. Lbd has EDS(excessive daytime sleeping) and have restless, disturbed sleep w/ behavioral acting out, at night. How important is it to have these symptoms to have LBD? Can you caregivers out there tell me if that is what you experience with your LO ? Is my wife's doctor missing something ? She hasn't had hallucinations, doesn't have good days and then bad days, and she sleeps like a log at night. She has cognitive problems, walking problems, and had delusions with paranoia. She has never had those 3 main symptoms. She is on various meds and they gave her ECT in the hospital for psychotic depression before he came up with possible LBD?? Anyone know if ECT can damage your brain?! The video they will show you makes it sound harmless and a slam dunk cure for serious depression. Any thoughts would be helpful. .........gary (wife Kay-age 59- going on 2 years with something terrible) __________ Information from ESET Smart Security, version of virus signature database 6439 (20110905) __________ The message was checked by ESET Smart Security. http://www.eset.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2011 Report Share Posted September 6, 2011 Have they ruled out NPH? Normal Pressure Hydrocephalus (NPH) Normal pressure hydrocephalus (NPH) is an accumulation of cerebrospinal fluid that causes the ventricles in the brain to become enlarged with little or no increase in pressure. The name of this condition is misleading, however, because some patients have fluctuations of CSF pressure from high to normal to low. In most cases of NPH, it is not clear what causes the CSF pathways to become blocked. http://www.hydroassoc.org/information/nph.html > > I have read that these 3 symptoms are what separate LBD from PD and Alzheimer's: 1. patients have detailed and vivid Hallucinations early in the disease. 2. people with LBD show marked fluctuations in their cognitive functioning- sometimes referred to as 'good days' 'bad days'. 3. Lbd has EDS(excessive daytime sleeping) and have restless, disturbed sleep w/ behavioral acting out, at night. How important is it to have these symptoms to have LBD? Can you caregivers out there tell me if that is what you experience with your LO ? Is my wife's doctor missing something ? She hasn't had hallucinations, doesn't have good days and then bad days, and she sleeps like a log at night. She has cognitive problems, walking problems, and had delusions with paranoia. She has never had those 3 main symptoms. She is on various meds and they gave her ECT in the hospital for psychotic depression before he came up with possible LBD?? Anyone know if ECT can damage your brain? The video they will show you makes it sound harmless and a slam dunk cure for serious depression. Any thoughts would be helpful. .........gary (wife Kay-age 59- going on 2 years with something terrible) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2011 Report Share Posted September 6, 2011 and others My moms md said as many have seconded that LBD can only be diagnoses for certain at autopsy Bit My moms was diagnosed with LBD Since 1. Her motor problems that were Parkinsonism did not include a lot of tremors and rather marked by imbalance which also led to many falls 2. Her cognition declined rapidly shortly after the motor issues although these were highlighted with lack of judgment and the hallucinations were few but not evil and rather sweet - like " all the Spanish people are praying for me on the living room " and " mr and mrs old friends are living across the hall " 3. Her rapid motor and cognitive decline did not respond to the usual drugs like levedopa and the excellon patch In short it was parkinsons gone very wrong very quick and severe dementia Hope that helps - Judy R. Strauss LMSW PhD Lead Faculty University of Phoenix Jersey City Campus 100 Town Square Place |Jersey City, NJ 07310 Cell- Email- Jrstr@... > Have they ruled out NPH? > > Normal Pressure Hydrocephalus (NPH) > Normal pressure hydrocephalus (NPH) is an accumulation of cerebrospinal fluid that causes the ventricles in the brain to become enlarged with little or no increase in pressure. The name of this condition is misleading, however, because some patients have fluctuations of CSF pressure from high to normal to low. In most cases of NPH, it is not clear what causes the CSF pathways to become blocked. > http://www.hydroassoc.org/information/nph.html > > > > > > I have read that these 3 symptoms are what separate LBD from PD and Alzheimer's: 1. patients have detailed and vivid Hallucinations early in the disease. 2. people with LBD show marked fluctuations in their cognitive functioning- sometimes referred to as 'good days' 'bad days'. 3. Lbd has EDS(excessive daytime sleeping) and have restless, disturbed sleep w/ behavioral acting out, at night. How important is it to have these symptoms to have LBD? Can you caregivers out there tell me if that is what you experience with your LO ? Is my wife's doctor missing something ? She hasn't had hallucinations, doesn't have good days and then bad days, and she sleeps like a log at night. She has cognitive problems, walking problems, and had delusions with paranoia. She has never had those 3 main symptoms. She is on various meds and they gave her ECT in the hospital for psychotic depression before he came up with possible LBD?? Anyone know if ECT can damage your brain? The video they will show you makes it sound harmless and a slam dunk cure for serious depression. Any thoughts would be helpful. .........gary (wife Kay-age 59- going on 2 years with something terrible) > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2011 Report Share Posted September 6, 2011 , I've probably helped 60 LBD families accomplish brain donations of their loved ones. These are loved ones with a clinical diagnosis of LBD whose brains were donated upon death to determine the definitive diagnosis. Half did not have LBD upon brain autopsy. Nearly all of those who did not have LBD did not experience visual hallucinations. All with LBD had fluctuating cognition. Some, but not all, had RBD. EDS was less common. Neither RBD nor EDS are considered core symptoms of LBD. You didn't mention if your wife has the central symptom of LBD -- dementia. Besides the central symptom, the three core LBD symptoms are visual hallucinations, fluctuating cognition, and parkinsonism. You must have two of the three to be diagnosed with probable LBD. It seems that your wife doesn't have any of the three core symptoms. I think there's no evidence that ECT can cause dementia. Of course depression and dementia are highly associated. There are many, many non-Alzheimer's dementias. A handful are reversible. If your wife has dementia, I suggest you see a dementia specialist. See an expert at one of the top institutions. Only a handful of the dementing illnesses can be confirmed during life; nearly all require a brain autopsy for definitive confirmation. The diagnostic accuracy rate of most dementias (including AD) is less than 50%. Good luck, Robin > > I have read that these 3 symptoms are what separate LBD from PD and Alzheimer's: 1. patients have detailed and vivid Hallucinations early in the disease. 2. people with LBD show marked fluctuations in their cognitive functioning- sometimes referred to as 'good days' 'bad days'. 3. Lbd has EDS(excessive daytime sleeping) and have restless, disturbed sleep w/ behavioral acting out, at night. How important is it to have these symptoms to have LBD? Can you caregivers out there tell me if that is what you experience with your LO ? Is my wife's doctor missing something ? She hasn't had hallucinations, doesn't have good days and then bad days, and she sleeps like a log at night. She has cognitive problems, walking problems, and had delusions with paranoia. She has never had those 3 main symptoms. She is on various meds and they gave her ECT in the hospital for psychotic depression before he came up with possible LBD?? Anyone know if ECT can damage your brain? The video they will show you makes it sound harmless and a slam dunk cure for serious depression. Any thoughts would be helpful. .........gary (wife Kay-age 59- going on 2 years with something terrible) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2011 Report Share Posted September 7, 2011 Robin, Thanks for your post. It is very helpful to understand what has been " seen " later in these patients. I am curious, were there any instances of visual hallucinations that ended up not being LBD on autopsy? Do you know other reasons for hallucinations. My mom does have hallucinations (that sound like they type described for LBD) and maybe some fluctating cognition but for the most part still seems so normal. She has always been over-dramatic in describing things, so it is hard for me to discern whether she is really experiencing fluctuating cognition. I tend to see any differences to be related whether she is in a good mood (always the case when she is busy and active) or a bad mood (depressed because she is lonely). Can you help me understand a little bit better about what fluctuating cognition " looks " like and/or how I might figure out if she is really experiencing this or just experiencing normal variations. Thanks again for your insight. Sherri > > > > I have read that these 3 symptoms are what separate LBD from PD and Alzheimer's: 1. patients have detailed and vivid Hallucinations early in the disease. 2. people with LBD show marked fluctuations in their cognitive functioning- sometimes referred to as 'good days' 'bad days'. 3. Lbd has EDS(excessive daytime sleeping) and have restless, disturbed sleep w/ behavioral acting out, at night. How important is it to have these symptoms to have LBD? Can you caregivers out there tell me if that is what you experience with your LO ? Is my wife's doctor missing something ? She hasn't had hallucinations, doesn't have good days and then bad days, and she sleeps like a log at night. She has cognitive problems, walking problems, and had delusions with paranoia. She has never had those 3 main symptoms. She is on various meds and they gave her ECT in the hospital for psychotic depression before he came up with possible LBD?? Anyone know if ECT can damage your brain? The video they will show you makes it sound harmless and a slam dunk cure for serious depression. Any thoughts would be helpful. .........gary (wife Kay-age 59- going on 2 years with something terrible) > > > Quote Link to comment Share on other sites More sharing options...
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