Have you read Boeve's "Continuum" paper on suggested treatment regimen for hallucinations? First order of treatment is an AChEI (such as Exelon). If that doesn't do the trick, you may have to try other meds such as Namenda or an atypical antipsychotic (Seroquel is usually the first choice; some can't tolerate this but can tolerate Risperdal; there's the most research in support of Clozaril).

Thanks, I will talk to Georgetown about this. Her next appointment with them is April 27. Just had Risperidone reduced to .25mg once a day and tdhe Exelon patch. The doctors said they want to reduce the Risperidone more and eventually do away with it while increasing the Rxelon from 4.6 to 9.5mg. I sure hope that works because I have having problems dealing with all this. LBD was just diagnosed on March 2 although her PCP said in July 09 they suspected it.

You can find the Boeve "Continuum" paper on lbda.org. It can be hard to understand on the first read-through. Additionally, I suggest giving it to any MD (neurologist or geri psychiatrist) treating the LBD symptoms.

Hi, of course everyone has to deal with this in their own way. I am a psychologist and a pharmacologist and we have pretty much decided to go with the "benign neglect" approach to Ma's hallucinations. Or we just simply say our eyes are bad, we don't see the things she sees and ask her to explain whats going on and simply go with what is real for her. Sometimes its about someone coming into the room or men outside trying to come in after her. My husband use to go so far as to take them on so to speak, he would pretend to go outside, sometimes pretended to call the police and make sure they were removed, he would reassure her he took care of it so she felt safe. Seems to work pretty well. For the most part her hallucinations were not really upsetting her and all the "black box" warnings on many of these psychotropic drugs really scared the crap out of my sister and I. She has also suffered from some paranoid delusions and ideas of reference regarding people on the TV which were a bit more of an issue, she did hit me once because she thought I had taken her purse, other than that not too much trouble overall. And reflecting back on that one I didn't handle it well at all, I was very defensive and my tone of voice really was probably pretty harsh. We can usually work through most of Ma's hallucinations when I have enough patience it with her if we show enough concern for her experience. From a few communications with Dorthea a new friend I have found here, it sounds like they took a similar approach with her husband. I'm not saying this is going to work for everybody, just thought I'd share those ideas. I always say its worth a try...I find myself saying it ALL the time

Peace,
Nancy

If you do a "search" on hallucinations I am sure it will pull up quite an assortment of posts. When my LO hallucinated most of them were non threatening: children playing in the yard, frogs, a cousin from N. Y. etc. I found the best thing was to let him tell me what was going on, the conversations he was having with them, etc. Then together we would laugh at or make fun of those characters. It would start him laughing again...humor was our best friend...and it alleviated his concern. I also would tell him it was that darned LBD creating the hallucinations. Most of the time he was aware enough of what was happening and would just say: oh its those darned hallucinations again. At times he was delusional and that was far worse. He would get an idea in his head and you just couldn't change it. He would accuse me of affairs...right...when I was caregiving here 24/7 I had extra time for an affair ... those were times I tried to humor him, etc. but at times to no avail. LBD is a cruel, wicked disease. Best thing to remember is: your LO doesn't want to be this way, its the disease not him/her talking and they have no control over it. Best of luck to all of you...my heart goes out to you.

Well, GT removed the Risperdal from my wife's meds and put her on 12.5MG of Seroquel. Also started on the Exelon patch. I have not noticed any difference in the hallucinations except they are lasting longer. Sometimes most of the night.

Did he put her on the Seroquel and Exelon patch at the same time? Our neuro would only change one thing a month so he could tell which medication my LO was having an adverse reaction to. Sometimes we could tell within a couple of days. He had a terrible reaction to Exelon patches which are really wonderful if you can tolerate them...this is true of all medications. We had good luck with Seroquel while many other cannot take it. Each persons individual reaction to these drugs is unique to their own system. Its try try try till you get the right combination...then after a while its try try again till you get the right combo again. Good luck to you, though the journey is difficult you are doing a wonderful thing taking care of your LO.

mariesmac,
I was thinking your wife had been put on the Exelon patch (lower dose) some months ago. Was the Exelon patch just started?
Robin

Robin, yes she was on the 4.6 and they changed to 9.5mg on April 27th. Seroquel is 12.5mg. Now she is on Azilect .5mg as well. Interesting thing last night. We discovered that I had missed the noon Sinemet and she slept 10 hours again! But, she has slept for 10 hours without me forgetting. I have only missed the noon dosage 2 times in 5 years.

Mac, I have forgotten my husband's noon dose of Stalevo [similar to Sinemet] a few times and there were no observable consequences. I doubt that had anything to do with her sleeping so long. I'd be thrilled if my husband slept more than five hours. Incidentally, he has been on the Exelon patch since March of 2008. There is no way to know if it's still effective but we just keep plugging along.
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Pat [64] married to Derek [80] for 34 years; husband dx PDD/LBD 2005, probably
began 2002-2003; Stage 3 or 4, depending. I am his caregiver at home.
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mockturtle. Sorry I meant that I was curious if the missed dosage reduced her hallucinations. She usually runs a cycle of 10 hours sleep, 8 hours sleep, 6 hours sleep and then 3-4 days of hallucinations all night and sleeps 4-5 hours during day.

Oh, I get it. Reducing the Sinemet should result in fewer hallucinations. I don't think I ever noticed that. His neurologist suggested that I eliminate the noon dose of Stalevo for two weeks to see if his hallucinations were reduced. I only went three days because his mobility was so adversely affected. We both decided mobility was more important for him than reducing hallucinations. Unfortunately, he had a very bad reaction to Seroquel.

Understand. That is what I'm afraid of is the loss of mobility. They still haven't figured out why she leans backwards. Never did that before an episode of Vertigo in February. Doctor calls it a stressor to Parkinson's but has no answer what to do to correct. He hoped the Azilect would take care of it.

Leaning in some direction is a parkinsonism symptom. I know of nothing that can correct it. PT, exercise, and closely escorting someone when they walk (and suggesting they straighten up) may be of (temporary) benefit.

I've been an RN for 23 years and I've never encountered a disease as complex, mystifying and exasperating as LBD!