Guest guest Posted December 4, 2011 Report Share Posted December 4, 2011 He walks well, though he does shuffle. He was very atheletic and still runs etc. I think this is why he's progressing more slowly than most. He used to be a calculus/physics teacher. We first noticed his problems when he lost the ability to do simple algebra. He also had an uncanny ability to determine his location, even in strange cities. Now he gets lost at the mall and can't find the car in parking lots etc. He has a lot of trouble with sequencing, for instance, he can't make a bed and often has trouble making a sandwich.( He'll put ketchup on his hotdog before putting the hotdog on the bun). Proportions have also proved to be a problem. He'll put 4X more food on his plate than he used to. (Huge piles of slaw etc). Short term memory is also an issue. He hallucinates, though that occurs mostly at night. He's on Seroquel for that and it has helped. His cognitive abilities also flucuate. Sometimes, he's very good (nothing like he used to be, but very functional) then other times he has trouble telling what time it is or putting on a shirt because he can't figure out which arm goes into which sleeve. He has a very slight tremor and it's not a resting tremor, only intention. He has the stooped shoulders and shuffling gate, but doesn't fall...yet. I've read a lot of books and articles about LBD and the more I read, the more convinced I am that he has it. His last psycological exam was a year ago, 9 months after his first one, and his scores weren't that much different which is why they don't think he has dementia at this time. BUT he exercises vigorously which has proven to slow down the progression of PD and dementia, so I think that is confusing the diagnosis. I'm just not sure if I should insist on seeing a specialist in dementia. I know the two diseases are treated with similar drugs, but I need to plan for long term care and LBD typically progresses more quickly. I don't want to be caught in the situation my mother found herself in. He's only 59. C   ________________________________ To: " LBDcaregivers " <LBDcaregivers > Sent: Sunday, December 4, 2011 5:54 PM Subject: Re: Opinions appreciated  Hi Can you please elaborate on your husbands condition now ? Is he still walking etc.? Thanks Judy Judy R. Strauss LMSW PhD Lead Faculty University of Phoenix Jersey City Campus 100 Town Square Place |Jersey City, NJ 07310 Cell- Email- Jrstr@... > I haven't commented much on this loop, but I follow the threads with interest. My husband was diagnosed with PD in 2009 at the age of 56. I never felt the diagnosis was accurate based on my father's battle with PD for the 20 years prior to that. My husband's problems started with cognitive impairment with the movement issues starting about a year and a half later. > > My husband has all the classic symptoms of LBD but when the doctors have given him the psycological tests he tests " normal " . Has anyone else had their LO test in the normal range early in their disease? My husband was a genius before this illness (IQ of about 160) My husband is currently seeing a movement order specialist as opposed to a demetia specialist. His doctor is at the Cleveland Clinic (so he's very good) but he is basing his decision on that test. I'm not sure what to do from here. Do I wait until his tests start showing more decline or go to another doctor? > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2011 Report Share Posted December 5, 2011 : I really relate to your husband's situation. My husband was a genius at math and could do the most amazing calculations totally in his head (speaking rapidly in French the entire time while he worked out the problem). He speaks 6 languages. The mental acuity does help slow the progression of the disease--I have seen it clearly in my husband's case. His first language was French, but he also speaks Arabic, Hebrew, Spanish, Italian and, of course, English, which was the last language he acquired. Because English was the last, it the first one slipping away and he now speaks Hebrew first. When I remind him to speak English, he then lapses into French. That's okay because I also speak French. I can imagine if I put him in a facility and he tried to communicate. When he speaks Hebrew, I remind him to speak English and he often says, " I am. " His cognitive abilities also fluctuate sometimes minute to minute. Cassie To: LBDcaregivers From: lcooke57@... Date: Sun, 4 Dec 2011 15:27:43 -0800 Subject: Re: Opinions appreciated He walks well, though he does shuffle. He was very atheletic and still runs etc. I think this is why he's progressing more slowly than most. He used to be a calculus/physics teacher. We first noticed his problems when he lost the ability to do simple algebra. He also had an uncanny ability to determine his location, even in strange cities. Now he gets lost at the mall and can't find the car in parking lots etc. He has a lot of trouble with sequencing, for instance, he can't make a bed and often has trouble making a sandwich.( He'll put ketchup on his hotdog before putting the hotdog on the bun). Proportions have also proved to be a problem. He'll put 4X more food on his plate than he used to. (Huge piles of slaw etc). Short term memory is also an issue. He hallucinates, though that occurs mostly at night. He's on Seroquel for that and it has helped. His cognitive abilities also flucuate. Sometimes, he's very good (nothing like he used to be, but very functional) then other times he has trouble telling what time it is or putting on a shirt because he can't figure out which arm goes into which sleeve. He has a very slight tremor and it's not a resting tremor, only intention. He has the stooped shoulders and shuffling gate, but doesn't fall...yet. I've read a lot of books and articles about LBD and the more I read, the more convinced I am that he has it. His last psycological exam was a year ago, 9 months after his first one, and his scores weren't that much different which is why they don't think he has dementia at this time. BUT he exercises vigorously which has proven to slow down the progression of PD and dementia, so I think that is confusing the diagnosis. I'm just not sure if I should insist on seeing a specialist in dementia. I know the two diseases are treated with similar drugs, but I need to plan for long term care and LBD typically progresses more quickly. I don't want to be caught in the situation my mother found herself in. He's only 59. C ________________________________ To: " LBDcaregivers " <LBDcaregivers > Sent: Sunday, December 4, 2011 5:54 PM Subject: Re: Opinions appreciated Hi Can you please elaborate on your husbands condition now ? Is he still walking etc.? Thanks Judy Judy R. Strauss LMSW PhD Lead Faculty University of Phoenix Jersey City Campus 100 Town Square Place |Jersey City, NJ 07310 Cell- Email- Jrstr@... > I haven't commented much on this loop, but I follow the threads with interest. My husband was diagnosed with PD in 2009 at the age of 56. I never felt the diagnosis was accurate based on my father's battle with PD for the 20 years prior to that. My husband's problems started with cognitive impairment with the movement issues starting about a year and a half later. > > My husband has all the classic symptoms of LBD but when the doctors have given him the psycological tests he tests " normal " . Has anyone else had their LO test in the normal range early in their disease? My husband was a genius before this illness (IQ of about 160) My husband is currently seeing a movement order specialist as opposed to a demetia specialist. His doctor is at the Cleveland Clinic (so he's very good) but he is basing his decision on that test. I'm not sure what to do from here. Do I wait until his tests start showing more decline or go to another doctor? > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2011 Report Share Posted December 5, 2011 Hi - My father is 83 and has been seen for over 7 years by physicians at the Cleveland Clinic, including two favorites: Dr. Ronan Factora and Dr. Ami Hall. They both specialize in elderly patients with dementia issues. Certainly it sounds like your husband could fit the Lewy Body Dementia diagnosis, but remember that it's not so important what you call it; to the patient, what is important is the treatment plan. So no matter what the " official diagnosis " is, what matters is how the symptoms are handled and affairs are in place to cope with each day. As long as your loved one is under the care of a physician you like who is familiar with different dementias and the risks (i.e.medication sensitivities) of each, you need not worry about whether it is officially declared " LBD " . My father (retired college professor) tested " normal " on mental status for many years, but that didn't interfere with the physicians prescribing the Aricept and Namenda that seems to have helped slow the progess of his condition. And the physicians were well-aware that intelligent people can score highly even in the presence of dementia. Continue to keep yourself informed, and rely on the information you get here from others' experiences to help on the way. Good thoughts- Carol > > I haven't commented much on this loop, but I follow the threads with interest. My husband was diagnosed with PD in 2009 at the age of 56. I never felt the diagnosis was accurate based on my father's battle with PD for the 20 years prior to that. My husband's problems started with cognitive impairment with the movement issues starting about a year and a half later. > > My husband has all the classic symptoms of LBD but when the doctors have given him the psycological tests he tests " normal " . Has anyone else had their LO test in the normal range early in their disease? My husband was a genius before this illness (IQ of about 160) My husband is currently seeing a movement order specialist as opposed to a demetia specialist. His doctor is at the Cleveland Clinic (so he's very good) but he is basing his decision on that test. I'm not sure what to do from here. Do I wait until his tests start showing more decline or go to another doctor? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2011 Report Share Posted December 5, 2011 : What type of cognitive testing did your husband have? If it was a MMSE (Mini-Mental Status Exam) done in the doctor's office during a regular appointment it wouldn't necessarily show a cognitive loss. My brilliant sister who has severe impairment can still ace an MMSE. My sister was diagnosed in 2007 with LBD after a DX of PD in 2004, then MSA, also in 2004. The true diagnosis was found via an extensive evaluation with a neuropsychologist which should have taken 3 hours, but due to her inability, it took 6 hours. In LBD, memory loss is not always the biggest issue, executive functioning is, so it takes more extensive testing to uncover that. I absolutely believe that a full neuropsych exam is essential with a possible LBD diagnosis. I've lost my father to this disease, my sister (61) is now progressing more rapidly, and my youngest brother (52) has PD with mild cognitive impairment. The importance of proper testing and seeking the assistance of LBD-aware physicians is paramount. Helen > > I haven't commented much on this loop, but I follow the threads with interest. My husband was diagnosed with PD in 2009 at the age of 56. I never felt the diagnosis was accurate based on my father's battle with PD for the 20 years prior to that. My husband's problems started with cognitive impairment with the movement issues starting about a year and a half later. > > My husband has all the classic symptoms of LBD but when the doctors have given him the psycological tests he tests " normal " . Has anyone else had their LO test in the normal range early in their disease? My husband was a genius before this illness (IQ of about 160) My husband is currently seeing a movement order specialist as opposed to a demetia specialist. His doctor is at the Cleveland Clinic (so he's very good) but he is basing his decision on that test. I'm not sure what to do from here. Do I wait until his tests start showing more decline or go to another doctor? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2011 Report Share Posted December 5, 2011 Hi , Sorry you and your husband are having to deal with this. My mil passed that test with flying colors until just recently and she is now in the last stages. And she is still alert somewhat. It wasn't until we went to the special clinic and had a team examine, take history etc. that they came up with this diagnosis LBD with parkinsion symptoms. Before that they were telling us it was likely something called normal pressure hydrocephalus (but refused to do scans to rule it in or out). She was falling for years. We thought it was the little strappy shoes she liked to wear and being in a hurry. hindsight is definitely 20/20. I would get him a real evaluation from the pros that know this stuff in and out. And go from there. They are finding out more and more so somewhere down the line maybe 6 months or a year who knows there might be something new that comes up that can be used with LBD that helps. And you will know much better which kind of medications to try and which to try and avoid. That also makes a difference. For my family knowing as close to possible what we are dealing with has really helped us all. -Dorothy From: LBDcaregivers [mailto:LBDcaregivers ] On Behalf Of lcooke57 Sent: Sunday, December 04, 2011 10:38 AM To: LBDcaregivers Subject: Opinions appreciated I haven't commented much on this loop, but I follow the threads with interest. My husband was diagnosed with PD in 2009 at the age of 56. I never felt the diagnosis was accurate based on my father's battle with PD for the 20 years prior to that. My husband's problems started with cognitive impairment with the movement issues starting about a year and a half later. My husband has all the classic symptoms of LBD but when the doctors have given him the psycological tests he tests " normal " . Has anyone else had their LO test in the normal range early in their disease? My husband was a genius before this illness (IQ of about 160) My husband is currently seeing a movement order specialist as opposed to a demetia specialist. His doctor is at the Cleveland Clinic (so he's very good) but he is basing his decision on that test. I'm not sure what to do from here. Do I wait until his tests start showing more decline or go to another doctor? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2011 Report Share Posted December 6, 2011 Dear , It was very inspiring to read your post. It gives me the hope and courage to go on. Sending hugs, Helene (Mom 77 in the Bronx, about 11 years with LBD) > > > > > > I haven't commented much on this loop, but I follow the threads with interest. My husband was diagnosed with PD in 2009 at the age of 56. I never felt the diagnosis was accurate based on my father's battle with PD for the 20 years prior to that. My husband's problems started with cognitive impairment with the movement issues starting about a year and a half later. > > > > > > My husband has all the classic symptoms of LBD but when the doctors have given him the psycological tests he tests " normal " . Has anyone else had their LO test in the normal range early in their disease? My husband was a genius before this illness (IQ of about 160) My husband is currently seeing a movement order specialist as opposed to a demetia specialist. His doctor is at the Cleveland Clinic (so he's very good) but he is basing his decision on that test. I'm not sure what to do from here. Do I wait until his tests start showing more decline or go to another doctor? > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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