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 Oh my gosh am I glad I found you guys... 
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Oh my gosh am I glad I found you guys...
Lisab,
To find the Boeve Continuum 2004 paper, go to lbda.org (not the Forum search). Type in "Boeve Continuum 2004" in the search box. It's the second item in the results set.
Robin


Tue Aug 03, 2010 11:43 pm
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Joined: Fri Jul 16, 2010 1:11 pm
Posts: 16
Location: Oakville, Ontario
Post Re: Oh my gosh am I glad I found you guys...
I agree, lack of sleep makes it very difficult.
I find that, just like when my kids were babies and not sleeping through the night, all I can think about is having a nap and then when the opportunity comes along I want to do something else besides napping. . When Dad dozes off I just want to sit on the deck with my book for 20 mintues, or gab to a friend on the phone or paint my toenails.. or (terrible), catch up on housework!! I am my own worst enemy at times!

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Allison - caregiver to Donald (father) age 76 diagnosed with LBD July 09.


Wed Aug 04, 2010 9:09 am
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Joined: Sat Aug 07, 2010 12:01 am
Posts: 2
Post Re: Oh my gosh am I glad I found you guys...
Hi! God Bless U! My mom was diagnosed w/ LBD in March and she went to Assisted Living Facility...Dr kept increasing Seroquel doses due to her hallucinations...after they increased her dose to 3x daily, she was living one big hallucination after the next..ie: little girls in dresses, lots about babies being sick, terrifying clowns...total paranoia..etc etc she climbed to 3rd floor of facility and tried to throw herself over because the men were chasing her...etc etc....after they called me, paramedics were called...we admitted her to psych ward of hospital...ALF wouldn't take her back...hospital would only release her to locked dementia facility...dr said she was in end stage demensia...they declared her legally incompetent...we moved her to locked facility where the dr's beliefs were they didn't need all these meds...took her off Seroquel...She is now living at home with me....not hallucinating at all!~We still deal with daily issues, but not the hallucinations and extreme paranoia! She is volunteering 3 days a week at the locked dementia facility! Not familiar w/ ur situation...but I saw the increased Seroquel post and thought I would share...Good luck...


Sat Aug 07, 2010 1:04 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Oh my gosh am I glad I found you guys...
Colleen: Glad you found a doctor with the sense to take her off something rather than just keep adding more! Some of the paradoxical effects are really scary, and how can we know???? Thank you for sharing this, as Seroquel is so often prescribed.

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sat Aug 07, 2010 8:44 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Oh my gosh am I glad I found you guys...
Colleen,

Thanks for sharing your mother's story. You were a strong advocate for her!

Do you (or does the MD) still think she has LBD since she's not hallucinating?

Robin


Sat Aug 07, 2010 12:34 pm
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Joined: Wed Dec 12, 2007 4:53 pm
Posts: 88
Location: Melbourne Beach, FL
Post Re: Oh my gosh am I glad I found you guys...
Dear Lisa:

You will find that what works for one LBD patient doesn't work for another and a little bit of a med works for some and another will need a mega-dose for any effect. Many here go by the motto, "Start low and go slow."

My husband died this past year. His autopsy confirmed LBD, which was the diagnosis by his neurologist. A few LBD patients cannot take Aricept, but many can. My husband had a violent reaction to Aricept, but Exelon stopped his hallucinations. Namenda was helpful for his memory retention. Seroquel, even in large doses, had no effect on him. Finally, he was put on risperidone for a variety of symptoms. It worsened the Parkinsonism and I believe hastened his death. It gets to be a balancing act between treating the intolerable symptoms and doing more damage.

I hope you have a knowledgeable and caring neurologist and family physician. My LO was lucky to have both.

Sorry you have to be here, but it's an invaluable source of information, friendship and understanding support.

Joy


Sat Aug 07, 2010 8:28 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Oh my gosh am I glad I found you guys...
Colleen,
Welcome and thank you for sharing your Mom's story and it just goes to show that sometimes the drugs are the problem!
May your Mom continue to do well!

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Irene Selak


Sun Aug 08, 2010 8:42 am
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Joined: Sat Aug 07, 2010 12:01 am
Posts: 2
Post Re: Oh my gosh am I glad I found you guys...
Hi..my mom has LBD...her drs increased her Seroquel in March...then put her on Excelon patch....her hallucinations got SO bad, they admitted her to a psych ward at hospital...only would release her to locked dementia facility....once she got there, they got her off of Seroquel and Excelon...she is now living at home, very peacefully with me...with little to no hallucinations! Perhaps having meds re-evaluated might help! Good Luck...God Bless U


Sat Aug 14, 2010 2:18 am
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Oh my gosh am I glad I found you guys...
Colleen, It's nice to hear good new, I hope your mom continues down that path.
Take Care

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Sat Aug 14, 2010 9:13 am
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