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 Is this forum open? 
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Joined: Thu Mar 02, 2017 2:35 am
Posts: 2
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Post Is this forum open?
I am new and trying to reach out for help with issues I'm having with my husband's LBD. His hallucinations have become troublesome and I need information from those with experience on medications. I am concerned because I see zero posts from this year. I am scared to death these lbda forums are no longer active.


Thu Mar 02, 2017 3:29 am
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Joined: Sat Mar 04, 2017 10:02 am
Posts: 35
Location: Near Fort Bragg,NC
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Post Re: Is this forum open?
Hi Sherry,

I'm brand new to this form, so I'm here lol.

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Jim


Sat Mar 04, 2017 10:09 am
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Joined: Sat Mar 04, 2017 10:02 am
Posts: 35
Location: Near Fort Bragg,NC
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Post Re: Is this forum open?
Jilytibrme wrote:
Hi Sherry,

I'm brand new to this form, so I'm here lol.


Couple blogs that have helped me:

http://thieflewybodydementia.com/

https://parkblog-silverfox.blogspot.com/?m=0

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Jim


Sat Mar 04, 2017 11:29 am
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Joined: Sat Mar 04, 2017 11:50 pm
Posts: 2
Location: Florida
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Post Re: Is this forum open?
I'm new as well - was able to register today after months of lurking older topics. I believe the forum was inactive while they completed forum updates. It looks like older topics have been archived and are read-only now. Definitely check out some of these archived topics. I've stumbled on a lot of insightful topics about hallucinations. My father has been hallucinating the past 3 years and they have been progressively getting worse. Unfortunately I've been unsuccessful at finding medication that's been effective, but I'd be happy to share some experiences he has had with various different meds.

Hopefully a lot of the older members become active again. Admins - perhaps an email blast out to all forum members explaining that the forum is online again would help? :idea:


Sun Mar 05, 2017 12:24 am
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Joined: Fri Mar 10, 2017 11:36 am
Posts: 135
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Post Re: Is this forum open?
Sherry, I am Jeff with LBD also. The hallucination/delusional stage isn't here yet for me but as someone who is concerned about his future, I would like to ask you a little bit about the hallucinations if I can, offline if need-be. I am not a person to bury his head in the sand to avoid unpleasantness.

I also know of something that *might* help; something I take that helps with the Parkinson-like problems and more importantly it helps alot with the cognitive issues, the "fog" if you will. I know it has anti-psychotic properties as well but need to check into it. If it pans out I will update this post...

Peace
Jeff


Sun Mar 12, 2017 9:47 am
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Joined: Wed Mar 15, 2017 4:06 pm
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Post Hallucinations / Delusions / Dellucinations
My husband with LBD, diagnosed 2-1/2 years ago, but symptomatic for several years, has periodic hallucinations where he sees 'little buddies' by his feet and speaks to them. This and delusions are occurring with increasing frequency

I would first have a pharmacist evaluate his medications to see if there is anything that could be contributing. Make sure you are keeping at least 6-month appointments with a neurologist. Contact the neurologist for a consult.

In my husband's case, he has been treated with anesthesia for surgery, typical antipsychotics, and an awful antibiotic (Levofloxacin) within the last year. Some of these have left him unable to even put a spoon to his mouth to feed himself, with continual hallucinations, and a total of 4 weeks in a recovery center this past year. Although the medication has left his system presumably, he still hallucinates.

LBD documentation says that up to 80% of those with LBD will experience hallucinations.

Since my husband's hallucinations appear to be harmless to himself or others, I ignore them. If I can't bear it longer, I look away or leave the room.

For delusions, I change the subject. There is a person who comes and sits with him and takes him for a drive once a week. I hear about the delusions from her (these are paranoid delusions). It is good for me to hear about them as they do not appear threatening to me at this time. I do not question him about them or argue with him about his delusions.

The most important thing is that you are the person with the disorder are safe physically, but that should be another topic for this forum I think.

All the best to you - I hope someone can offer some better advice.


Sat Mar 18, 2017 9:28 am
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Joined: Sat Mar 18, 2017 10:41 am
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Post Re: Is this forum open?
I am new as well to this forum. I have so many questions and wanting all the answers now...lol!! I am caregiver to my Dad who is 67 with LBD. He was misdiagnosed for 3 years and treated incorrectly with medication. He came from a tiny town in Georgia to live with me here in the New Orleans area. He has had only one episode of seeing things that were not there that I know of. But he cries at the drop of a pin, sometimes combative when he doesn't get his way. He seems like hes throwing a temper tantrum. But worries me is that he feels like hes dying and sometimes even tells me that he wants to die. Dr. Houghton tells me that this is all part of LBD. My Dad used to be this '"social butterfly" and now he doesn't want to see anyone. Its heart breaking...


Sat Mar 18, 2017 11:06 am
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Joined: Wed Mar 15, 2017 4:06 pm
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Post Re: Is this forum open?
Hi my little Chickadee. You are indeed having a time of it. You can ask all the questions you want here and someone will likely be of help.

Sounds like meds have not been your or your dad's friend in the past. However, some of these symptoms seem like they could be helped with medications.

My husband takes several that DO help. A couple that could be helpful are:

- Lexapro/Escitalopram for mood (anti-depressant)
- Seroquel (Quetiapine fumerate) for anxiety (atypical anti-psychotic)

(He also takes Clonazepam for REM sleep disorder, Aricept (donepezil) and Memantine (for memory).

Perhaps the doc can help with one of these or adjust existing meds?

Best wishes and hang in there!


Sat Mar 18, 2017 11:58 am
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Joined: Thu Jun 01, 2017 10:16 am
Posts: 5
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Post Re: Is this forum open?
Sherry, I am Jeff with LBD also. The hallucination/delusional stage isn't here yet for me but as someone who is concerned about his future, I would like to ask you a little bit about the hallucinations if I can, offline if need-be. I am not a person to bury his head in the sand to avoid unpleasantness.



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goldenslot


Thu Jun 01, 2017 10:26 am
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