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Joined: Mon Jan 18, 2010 12:00 am
Posts: 2
Location: IL
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I am new here and need help. This feels like a nightmare that doesn't end. My husband has been disagnosed about a year and was doing after a fall or for some other unknown reason he needs almost constant supervision.
He is paranoid about somebody stealing all we have. If our son wasn't here in town I'd be all alone in this....No one else can know what this is like, if you haven't expereinced it yourself.

Mon Jan 18, 2010 11:19 pm

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Welcome! I am fairly new to this forum, too. My husband was diagnosed with Parkinson's Dementia or Lewy Body Dementia five years ago. Recently, it was decided he has LBD, which I have known for all these years. His illness has progressed in steep increments, rather than gradually. Yes, it's a nightmare. But this forum will help you to cope, because we're all in this nightmare together. God bless you!! --Pat

Tue Jan 19, 2010 12:37 am

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
bmfulk -
Paranoid delusions can be part of LBD. Paranoid delusions can be controlled in some LBDers with proper medication. Paranoid delusions can be triggered in some LBDers who have infections. So...are you sure he's properly medicated? And are you sure he doesn't have an infection?

Tue Jan 19, 2010 1:59 am

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
PDD is a type of LBD. Used accurately, the term "Parkinson's Disease Dementia" refers to someone who has had symptoms of parkinsonism for more than a year before the onset of dementia. The term "Dementia with Lewy Bodies" refers to someone whose dementia is the first symptom or who parkinsonism precedes dementia by less than a year.

Tue Jan 19, 2010 2:01 am

Joined: Fri Jun 19, 2009 11:23 am
Posts: 201
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I am sorry you had to join us. You described it perfectly, "a nightmare that doesn't end". I have just come from that and am now getting a break. With good medications and like you say, "constant supervision" my LO is doing well, but I have learned to lower my expectations of our life together these days. I know some day, probably without any notice we will be back to the nightmare days and nights of hallucinations and delusions. The fluctuations in cognition remind me of watching waves of an ocean, They come in and go out. My husband has no idea that he is sick and I'm kind of glad for that or else I think we would be dealing with depression also.
Keep reading the forum, you will find many who have gone through what you are still going through it.
We care!

Tue Jan 19, 2010 11:28 am

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Hi BMfulk - ditto what everyone else has told you. This is a great resource for both support and for information.
My dad's decline was very precipitous also. He had 1 fall and was disoriented in Feb. (went to ER, nothing conclusive), 3 or 4 falls in June, then in July he had a fall and I insisted he go to the ER again to see what was going on. He had been living indepently one day and even driving, and then after that July fall he suddenly could not do ANYTHING for himself, including walking, sitting up, standing up, and could barely feed himself. He was totally incontinent. His voice was so weak, speech so garbled you couldn't understand him, then he had hallucinations. 3 days later they stood him up and he walked very fast (with a walker) across his hospital room! But, his personality totally changed from a happy, very social person to an angry, confused, demanding, aggitated person.
He has some "good days", but after that July incident he slowly digresses every week. He mostly never walks, can't transfer from bed to wheelchair, can't give himself a shower, wears depends all the time and is basically incontinent.
On a good day he can carry on a somewhat normal conversation for a few sentences, talk about what is on the news for a minute or two. Then his communication goes downhill. A few weeks later we may have another "normal" conversation.
Anyway, there are tons of us who know what you are going through so I'd suggest reading as much as you can in the various topics in this forum, get on the chat, and you're bound to make some great new friends and learn a lot. (I find information helps me deal with things like this.)
All the best to you, Lynn

Thu Jan 21, 2010 6:09 pm
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