There is nothing about this disease that is easy, I do hope the meds are helpful and won't make things worse. My advise to you is try hard not to be too hard on yourself, take each day as it comes and just know this illness has taken him over and he can't help what he says. Be kind to yourself, you are doing the very best you can !

I hope the Risperdal works for him. My husband got neuroleptic malignant syndrome on it--it didn't happen immediately but after a couple of weeks. Watch out for increased muscle stiffness, trouble speaking and swallowing and fever. In other words, a profound increase in PD symptoms [except for the fever].

Having been through what you are going through, I can feel your pain but not alleviate it. It's a matter of medication tweaking. For my husband, Seroquel was the right drug. Oh, he still gets his agitated/aggressive periods but they are fewer. It could also be the progression of the disease. You can't win with Lewy. But you can keep fighting with whatever seems to work. One size doesn't fit all.

im so sorry for what you are going thru..

we are not there yet.. but we have had some incidents, that have scared me .. when he is so angry at me... for soemthing he thought i did.. it hurts so much that he would think that..even when you know its the lewy and not him.. my hubby is a gentle kind sweet soul too... this is NOT him...

my counselor has suggested to know a place where you can go, if it gets out of hand, till you can call for help!!

i hope the med changes are the answer for you..

stay strong and please stay safe!!
cindi

This article may have been posted before but I'll post it again. Some good advice here, much of which I was forced to follow at some point. http://www.uiowa.edu/~centrage/archive/pubs/Newest%20Versions%20-%20pdf%20format/Coping%20with%20Violence.pdf It's called Coping with Violence: If Your Loved One Changes

Thanks everyone. I'm glad to see from the article that I did do some things right. I'm telling him his Lewy Body people are bothering him too much, that we need the extra help, and that I love him and it's not his fault AND that it's not my fault either. I tell him I'm sorry & that it's bigger than both of us. But, I can't get past that I want to just bring him home because I want to take care of that sweet man I know is in there fighting to get out. I know I can't. We know now that he experienced malignant neuroleptic syndrome when they had him on a too high dose of Seroquel the first time in 2009 (I had one VA psychiatrist actually tell me she was surprised he's still alive now--gosh, that was hurtful in a way). I'd reluctantly started it back in October while Ted was still at home with some success. Now we're trying the Risperdal. Thanks for being there. Again I know I'm not alone.

Well, I gotta tell ya, there have been NO episodes of belligerence since I took him off the Parkinson's med. -NONE! Paranoia, yes, delusions, of course, but without the meanness I feel I can still care for him at home. It was SO emotionally debilitating to deal with the wicked anger, so I really feel for you folks who are dealing with it constantly. I know this may recur later in the disease, and I know now that this is the final straw that I would not be able to stand. The good thing is, this forced me to go ahead with planning for that stage, so I found out about a lawyer who's giving me free advice about the financial side, I checked into 24-7 care (WAY too expensive, but now I know) and I found a new (male, burly -and he cooks!) caregiver who might be able to come in several days a week for respite. (I went to the beach overnight -wow!) I think that's all I need for now. It was very sad when I had a woman in from the agency about 24-7 care and the same afternoon interviewed the new caregiver. My husband looked sad, and when I asked what was wrong, he asked what he had done that was so bad. Just about wrenched my heart out. So I said firmly to myself, "NO foster care home now," not when he's back to "normal". I just expect we'll need more help within a year or so. Thanks for all your input!

Kathy, I know that PD drugs can worsen aggressive behavior. In my husband, though, it preceded his diagnosis of PD/LBD and taking PD meds, as did his hallucinations, delusions and paranoia. But every time an increase in carbidopa/levodopa was necessary [as I have posted before, he would be unable to swallow today without the high doses] his agitation got worse as well as the hallucinations. The Exelon patch helped a LOT at first but probably doesn't do anything now. The Seroquel has been a godsend. I'm sure the SNF would not keep him unless his behavior was modified.

Glad you are able to keep your LO at home. Sometimes it takes a LOT of tweaking to find the right balance of meds or, in your case, discontinuing some. Did his PD symptoms become a lot worse when he went off them?

Pat and everyone: I am beginning to think there is something in the "air". Several of our LO's are getting agitated when they are usually very calm. My LO too is all of a sudden getting more agitated, and beligerent, and demanding to go home. He is accusing me of wanting to end our relationship (we've been together 25 years), or never wanting to have sex, or keeping him a prisoner here. Up until now he can usually be talked out of his delusions and hallucinations. He has been on Parkinsons medications for the past 14 years, so I don't think it is that. By the time we got the Lewy variant diagnosis last year he had had hallucinations, cap gras, delusions, and cognitive decline thus the Exelon and Namenda we tried didn't help and made his PD worse. Seroquel has helped, especially with the sleep at night. He had only taken it in the evening. But just lately we have started it in the early afternoon, to get ahead of the sundowning.....I hope it helps.

Pat, did they start your husband on it slowly, and then build it up? Norris has been restless the past couple of days, not napping much, and very agitated. If it gets worse I will take him to the Dr. Monday to see if it is a UTI (he has never had one), if it isn't that then maybe we need to increase the Seroquel.

Just one more "lewy" leap. Thanks also for letting me vent.

Carol

Oh, my, yes! His neuro [not the same one he has now] ordered him 50mg tablets of Seroquel and I cautiously gave him 1/2 [25mg] and that was too much. He got very groggy and weak. Scared the cr@p out of me and I told the doctor about it and said I was not going to give him any more. However, I did resume it later on [we were desperate in the late afternoon, early evening] starting with 1/4 [12.5mg] and worked up to 25mg. He now takes 50mg three times a day.

So many of your stories sound so familiar! The guns stuff, and capgras and all that. My LO has signs of Parkinson's but also arthritis, so who knows? I never saw ONE OUNCE of improvement in movement when he was on the PD meds. So no problem to give that up -did have the son-in-law redo the front porch with a low threshold and more even stairs and better handrails, and that did a LOT more good than the meds! I don't know what gets my husband going -I think when he's tired or overstimulated during the day he acts up, but yesterday he started hollering at the TV (Pawn Stars or something innocuous, I THOUGHT ) and was hard to calm down and get to bed -nothing much during the day to cause that. Anybody else figure out triggers for bad delusions or paranoia? The Seroquel works wonders for my LO, by the way, and added a 1/2 pill at lunch time -but he still sees black bears and thinks cars with one headlight mean drug dealers. Also takes Depakote for the paranoia now. I'm afraid it all does make him sleepy a lot in the daytime, but rather that than crazy time, I feel!

Yep, everything's a trade-off!

Pat....Norris is getting 2 25 mg Seroquel in the evening to help him sleep, and it does. And she (the PD Movement Disorders Specialist) has him taking another 25 mg. about 1 p.m. ..... but that may be increased if the agitation doesn't abate.....Carol

I keep reading about Risperdal on here, and after researching it myself, I'm not thinking I want any doctor prescribing it for my husband, mainly because the potential side effects scare the crap out of me. My husband has Afib and has had one small silent stroke in the past (although God only knows when that happened). So the thought of him taking this medication and risking the chance of having palpitation, a cardiomyopathy, a stroke or death is far more than I want him to risk. I have been entertaining the thought of asking his neurologist to prescribe Seroquel, though, because I, too, am tired of the belligerence I get from him.

Great article Pat. Thanks for posting the link to it.

Yeah, Risperdal didn't work for us, either. You DO have to do your research or a dr. tries to prescribe something that really wouldn't be a good idea. OR you LO just doesn't react well to it, which you never know until you try, and then you have to put your foot down, like I did with the PD meds. WE know best, NOT always the doctor, because we see the results.