Does anyone have this as a diagnosis? I think they consider it if Parkinson's is also involved. If you have that diagnosis does it present differently than AD? We don't have that diagnosis, but it is a possibility...
frand-my neighbor's husband has been tested many times and is being treated for both as nothing definitive has been determined. Very frustrating for both of them. He has been getting speach and physical therapy and done well with both.
In addition to my husband having AD, my father has been diagnosed with Lewy Bodies dementia. My parents are 3 hours away so I see them quite a bit. I have to say that I don't think my father has all the symptoms fo Lewy Bodies; he doesn't really have as much movement as I would think. But it's definitely a dementia and my mother and I compare notes every day on the crazy things that go on. My father is pretty much bedridden so he can't get into as much trouble as my DH can!
http://www.aafp.org/afp/20010215/contents.html, click on Diagnosing Dementia by Santacruz and Swagerty, page 703
My mother was diagnosed with AD, but my father (a doctor) came to believe she had Lewy body. The main reason was because she reacted to stimuli -- her symptoms would be much better when she was in a new situation, and then, as the "newness" wore off, they would revert.
For example, I had not seen her for a couple of years -- they lived halfway across country, in a tiny town that was almost impossible to get to, I had numerous responsibilities at home, and she was way too sick to travel. My father had to have surgery, and asked me to come be with her while he was in the hospital -- he said she hadn't spent a single day "alone" since he'd married her, and couldn't bear to leave her by herself in the NH. She was in very bad shape, hadn't recognized anyone for several years, rarely spoke intelligibly, couldn't walk, serious problems with anger and aggression, etc.
When I walked up to her, sitting in the hall of the NH in a wheel chair, and she saw me, she lit up. She called me by her pet name for me, and she spent the rest of the afternoon talking about fun things we had done together, and telling me how much she loved me. (I don't imagine other people could have understood most of what she was saying, but it was very clear to me.)
Second day, she knew I was someone she liked, but not exactly who I was. She was happy to be pushed around in her wheelchair outside, responded when I pointed out pretty flowers, didn't really talk.
Third day, she didn't know who I was and didn't care. She was easily angered by anything, and did her level best to inflict bodily damage on me, or anyone else who came near. She was that way for the rest of the time I was there.
The Neuro's, after deciding to make a diagnosis, thought husband had Lewy Body, but since he wasn't having hallucinations or acting out dreams settled on Parkenism/w dementia and later added AD. They still ask me if he is having hallacinations or acting out dreams. If so, I don't know if they would change the diagnosis or not.
Sunshyne, my husband does not act out like your Mom, so I am sticking with the Dementia. I don't know which of the three is worse. lmohr
One of the things I noticed while I was sorting through my files trying to find those links for frand, was that Lewy body is much more common in women than in men.
Sunshyne - Thanks for going to all the trouble to locate that information and sharing about your Mom. Now - is there a way to click on the website from the discussion? It would be so easy if that worked. Right now I'm enjoying the Opening Ceremony for the Olympics so will put off reading this until tomorrow.
frand, are you asking whether we can insert active links into a post? Because I haven't found a way (not that I've really looked.) But copying the URL and pasting it into the browser is almost as fast, anyway.
Imohr, there is so much variability in the symptoms any given patient may have, and so many patients develop mixtures of disorders any way, I think the diagnosis doesn't really matter when it comes to which one may be "worst".
I agree with Sunshyne. After a long journey (much of it shared with all of you), my DH was finally diagnosed with Lewy Body Dementia. One of the key hallmarks to LBD is the REM sleep disorder. Instead of being still during REM sleep, LBD patients act out their dreams. My DH moves his arms and legs and talks during his sleep. He was not one of those people who talk in their sleep (not for the first 28 years of our marriage). He even notices that he has nights where he's acting out his sleep when he is very active.
Based on my research, LBD involves the REM sleep disorder noted above, movement disorders (parkinson-like and other compulsive movement disorders like tics - sometimes referred to as myclonic jerks), and affects the autonomic functions (the "automatics"). The autonomic system involves all of the major functions of the body, including controlling blood pressure, sleep and breathing, bladder and other urinary tract functioning, and a whole list of functions that are better described by a quick scan of "autonomic function" in google. Other noteworthy characteristics of LBD include more extreme deviation in clarity (can sometimes seem much much better, but not for long), executive dysfunction, and memory impairment. The type of executive dysfunction and memory impairment seems to be somewhat different from AD. It's kind of like a processing problem where the LBD affects the midbrain, which processes signals. For example, my DH may not be able to tell me our anniversary, but he gets closer if I ask him when we said our vows. Other times, he remembers our anniversary without prompting.
Thank you Sharan. I can see why the pcp mentioned it when I was telling him about the tremors my husband was having at bedtime. At church this weekend I noticed his hand was doing it, so it is not just at night. In the neuropsych testing his 'executive function' was bad. His short term memory is not all the time - he forgets most of the time but other times he remembers what was just said or said earlier. It surprises me. We see the neuro in 2 weeks, so will see what she says. Either way, it is still dementia.
My husband is diagnosed with Lewy Body Dementia. He has the slow movement and rigidity and acting out his dreams, though no hallucinations yet (and very little tremor). He has fewer memory issues and in these early stages more problems with executive function (planning and dealing with more than one thing at a time). The LBDA web site is safe again--their server got a virus but they moved it to a safe server.