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 New here - husband with TERRIBLE paranoia 
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Joined: Sun Sep 15, 2013 6:19 pm
Posts: 3
Post New here - husband with TERRIBLE paranoia
Hello everyone
I am new to this site, but I'm very glad I found it. My husband who is 55 (I am 41) has been recently diagnosed with LBD, but he's had symptoms for over 5 years now. He has the parkinson's symptoms pretty badly and he takes Neupro for that, and he has a multitude of other symptoms but the worst part is horrible, horrible paranoia. That's what he's had the longest too, that's how it started out. He's CONVINCED "someone" is out to get him, who it is and what they want to do to him evolves now and again over time, but...every minute of every day, year round, for almost 5 years now...all he does with his time and all he thinks about is how to prepare a defense, what "the guy" will say, how he's being framed, etc. He even paid good money to hire a lawyer to defend him against an imaginary tormentor. He has hallucinations, sees people stalking through the house to get him, lurking out in the yard, standing on our doorstep, people who aren't there. His delusions are terrible, tormenting him...and therefore he torments everyone else with them, it's his only topic of conversation, and it is driving us, his friends and family, mad beyond belief, nobody wants to be around him anymore because they know his imagined persecutors are all he will talk about. I know the second I walk in the door he's going to pounce on me with "What are we going to do? I know they are out there...listening to us right now!" and he won't stop until he goes to bed. For five years, I've been listening to this. He's so upset all the time, full of adrenaline on "fight-or-flight" mode, that he has destroyed an adrenal gland, and is likely working on the other one, which he could go into adrenal crisis and die if he destroys them both.

He has seen psychologists, psychiatrists, neurologists, everybody, and though he was only recently diagnosed with LBD, all those other doctors have tried every medicine in the book on him, and the LBD causes him to have a very very low tolerance for any medicine, so he can't take anything at all except the Neupro and tiny tiny bits of seroquel, and even those tiny bits just knock him out completely, he can't stay awake at all on that. So it seems his only choice at the moment is sleep 24 hours a day or shake in fear every moment he's awake.

Nobody has any other answers. He can't work anymore, obviously, he is scheduled to start collecting disability in a couple of months but he can't just sleep 24/7, that's no life, but neither is the paranoia. I don't know what to do for him, I feel so helpless seeing him suffer endlessly like this. Also we have a 9 year old daughter and a 3 year old daughter who herself has a chronic inflammatory disease that we...or I should say I...have to manage as well. And I don't know how much longer he has to live, but I think he should spend every moment he can with his girls, while he's still around to do it, but he just can't focus on it, he can't shake the paranoia, and I don't know what to do or say. It's just awful, the cruelest thing ever, and also his father had this same disease, died of it eventually.

Has anyone else experienced this ghastly paranoia or delusions? Has anything worked besides medication, which he can't take?

Thanks, I'm glad to know you're all here :)

Mon Sep 23, 2013 5:09 pm

Joined: Thu Aug 15, 2013 5:30 pm
Posts: 7
Post Re: New here - husband with TERRIBLE paranoia
Welcome! I'm sorry to read your husband's story and send you strength for enduring and living with this paranoia. My suggestion is to not give up trying to find something to help this matter. It does seem that no two cases are exactly the same, which makes caregiving so hard.

We experienced paranoia before my Mom was diagnosed with LBD earlier this spring. I believe it was the Klonopin and Ativan that was causing it because they did not know what they were treating. She felt that the police were going to lock up the whole family and even warned certain relatives to stay away from us. Mom was also worried that all the doctors and nurses were out to get us and take away our money and homes. While in rehab, she felt that even her roommate was a spy, working for the rehab center. Since being diagnosed, she no longer takes Klonopin and Ativan and was switched to Seroquel for sleep and smaller doses during the day for anxiety. The paranoia luckily went away. I've read that sometimes treating the motor problems creates cognitive decline and trying to treat both is quite a balance to achieve. Don't give up and keep encouraging the professionals to work with you in trying to find something to help.

I will send up some prayers for you, your husband and children. God Bless.

Tue Sep 24, 2013 8:52 am

Joined: Thu Apr 21, 2011 9:07 pm
Posts: 248
Post Re: New here - husband with TERRIBLE paranoia
My heart goes out to you! That level of fear must be devastating to him and to all of you, also.

My mother had frequent, but not constant, bouts of terrible delusional fears - the worst was being convinced that my grandson had been kidnapped and abused. But she also thought the building was on fire (once or twice a week), that I had been carjacked (every couple of weeks), and various other things. Dead bodies on the floor.

One thing I did was place an absolute ban on the TV news ("if it bleeds, it leads") and discourage her from reading the front-page section of the newspaper. Those stories helped to trigger fears - she would hear something and work it into a whole saga in her own life.
She has also benefited immensely from seroquel, even though it made her sleep more. Better sleep than terror and agitation all the time.
I have also found some music to be soothing - she likes hymns, and I got several CD's to play for her. Also Lawrence Welk, who could not possibly agitate anyone (reruns on public tv here on Saturday evening.) Familiar musicals - My Fair Lady, Sound of Music, South Pacific, anything with Fred Astaire.

If you have not already met with a clinical pharmacologist, aka "interventionist", that might be worth a try - they are specialists in drugs and drug interactions. Better yet, get a neurologist who specializes in LBD and an interventionist together for conference call or something. I have done that and found it really helpful. (Helps to be on faculty in med school as I can arrange such things more easily.)

You will be in my thoughts - hope so much that you will find a way to ease his fears!

Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.

Wed Sep 25, 2013 12:43 am

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: New here - husband with TERRIBLE paranoia
Welcome to the LBDA forums, I hope you find some comfort here with others that understand and know what your life is like, this stage that you are at is indeed the one of the hardest but it won't last forever but while it is going on it is great deal to deal with.

Good Luck !

Irene Selak

Wed Sep 25, 2013 5:58 pm
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Joined: Sat May 25, 2013 3:53 pm
Posts: 330
Post Re: New here - husband with TERRIBLE paranoia
Welcome to the forum! My mother also had delusions, the hardest on us may have been that she was sure my Dad was having an affair with her caregiver and they wanted to move her into a nursing home. But she didn't have the fear that your husband has. Dealing with that and your children must be very draining!!! My mom did get much better on the Seroquel and if I remember correctly, the sleeping effect lessened over time. I think the body adapts to the drugs over time but it sure did help the hallucinations. Keep posting, it's always good to "let it out" even if it's in writing!

Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.

Sun Sep 29, 2013 12:33 pm

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: New here - husband with TERRIBLE paranoia
Welcome, and ditto the suggestions that you continue to work with the drs. to find a med that may help. Anything you can find to help calm him, like the suggestion about music or other activities that can help him focus on something positive or at least relax him may help temporarily. Big hug, Lynn

Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Wed Oct 02, 2013 7:25 am
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