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 Son of LBD patient 
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Joined: Tue Oct 06, 2009 10:22 am
Posts: 2
Location: Ft Myers
Post Son of LBD patient
My father was diagnosed just three weeks ago with LBD.

In hindsight, his symptoms started years ago with REM behavior disorder. About a year and half ago, he started with Parkinson's like symptoms and some cognitive problems (loss of train of thought, searching for words etc.) within the next six months.

His mental condition continued to deteriorate slowly but he was being told he might have Parkinson's but no mention of LBD. He went in for a hernia operation in August. Within the week after returning home his behavior became more erratic and agitated. He then stopped sleeping for a few days and finally got so bad with hallucinations and combativeness that eh had to be sent to the hospital (at this time, we still had no idea of what we were dealing with). It turned out he had an infection in his neck. After three weeks in the hospital, we got a diagnosis.

He is now, hopefully going into a facility where he will be treated by someone with experience with LBD. We hope to be able to get him better to where we can at least keep him eating and drinking regularly.

So far it has been a frustrating and difficult process where no one seemed to have the answers. I have learned more here in three hours than from the whole time talking with doctors.


Fri Oct 23, 2009 11:48 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Sorry to hear about your father. Sounds like you are arranging great care for him.

Will he be moving into a dementia care facility? Do they have other LBD patients?

Please read Boeve's "Continuum" paper on lbda.org. It provides a good treatment regimen.

Who is your father's neurologist or geriatric psychiatrist, and do you recommend him/her?


Fri Oct 23, 2009 2:00 pm
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Joined: Tue Oct 06, 2009 10:22 am
Posts: 2
Location: Ft Myers
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He was transferred today to a dementia facility where the doctors have some experience with the disease. I do not have the names of his doctors yet. I am in Florida and my siblings, who are caring for him, are in Indiana. For my part, I am trying to do the on-line sleuthing for info. since I can't be there in person.

I have downloaded "Continuum" and forwarded it to my siblings. I'll be starting to read that in the next couple days.

I do know the care he has received to date is horrible. He has yet to see anyone who appears to know anything about the disease or if so has bothered to tell us much about it. We hope that changes now.

Thanks for your concern and advice.


Fri Oct 23, 2009 4:33 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3396
Location: Vermont
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Just read your post (I joined a few days ago). I can agree with you that a few hours on this forum gives you way more info. than anything else I've tried.
My dad probably has LBD too, and he lives far away, so I know what it's like to try to manage care from a distance.
Best, Lynn


Thu Jan 21, 2010 8:01 pm
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