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 new comer here... 
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Joined: Wed Jan 06, 2010 1:24 pm
Posts: 9
Location: Santa Barbara
Post new comer here...
I 've been a member here for a little while, just trying to make sense of it all.My mother was diagnosed in Jan. of this year with LBD, and it has been a roller coaster ride. She was diagnosed with cancer in Nov. of '09 and immediately had surgery, which sent her in a downward spiral. The anesthesia did a number on her. She had obvious signs before - hallucinations, both visual & auditory, problems remembering names & things, a shuffled walk and slightly hunched over.At this point her GP Dr. was writing all this off as 'old age' and refused to prescribe anything.After the surgery she was seeing animals coming out of the walls, children in the yard, people talking in the attic, etc.Finally the Dr. put her on zyprexa, which helped a little with the hallucinations but made her like a zombie. By Christmas she was a wreck, talking jibberish, eating with her hands and missing her mouth half the time.She collapsed on the way to the bathroom and ended up in the hospital for 2 weeks. I didnt think she would ever return home. Fortunately we got a neurologist on board who, after talking with me, my father & my sister ( all of whom had been around my mother during all of this) diagnosed her with LBD. He immediately put her on the Excelon patch,& seroquil which improved things immediately. She has steadily improved and is at home now with caregivers 5 days a week, 8 hours a day.She knows something is wrong with her memory and we have told her its from the anesthesia. She seems to accept that, but gets frustrated with her situation & the caregivers. Unfortunately she still has auditory hallucinations of people outside & in the attic. The Dr. ups her seroquil and it helps for a week, then she starts hearing 'them' again.We have found a new GP Dr., who is much better. My father is holding up, but barely.He's 86, my mom 80.
I live 700 miles away, but go there every 6 weeks for a week to help out & see how things are. All of this has been very emotional for our family and continues to be. It is helpful to hear other peoples accounts & situations with this disease, thanks to everyone on here.
John in CA.

Wed May 19, 2010 2:05 pm

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Hi John - I know how tough it is to be far away as I "commute" every few weeks from VT to MD to help out with my dad and take care of his house and legal/financial matters.
I hope your dad is able to get some respite when there are caregivers there with your mom. It is good that you can get there as often as you do.
I am so sorry for what you are all going through.
I am getting my legal papers in order now so that there are no surprises for my kids and hopefully I will have covered all the bases in case I get some horrible disease later on.
You will get a lot of support on this forum and a ton of useful, up to date information, so stay tuned! The chat is also a great place to vent, make friends and get info. Take care of yourself too. You'll need your own health and strength to help your dad and mom get through this. Lynn

Wed May 19, 2010 2:35 pm

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Welcome to the LBDA forums and I am glad you are starting to post and have been able to read others stories, we all need support when dealing with such things in our lives.
Visit us often and continue to soak in the info and glad you have confidence in the new doctors.

Irene Selak

Wed May 19, 2010 4:25 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Hi John,

Glad to know your mom was able to make it back home.

Exelon and Seroquel may not end hallucinations for everyone. There is at least one other medication you might discuss with the MD -- Namenda. Sometimes that can help. Be sure to read Dr. Boeve's "Continuum" paper from 2004 (find it through a search on for treating the various symptoms of LBD.

What's the name of the neurologist who gave your mother the diagnosis of LBD? Sounds like a good one.

Where do your parents live? Are they by chance in Medford, OR? A former Forum member lives in Medford.


Wed May 19, 2010 4:34 pm

Joined: Wed Jan 06, 2010 1:24 pm
Posts: 9
Location: Santa Barbara
Post Moms Neurologist
Hi Robin,
My moms Neurologist is Dr. Harbaugh in Santa Barbara. My folks live fairly close to Santa Barbara - fortunately my dad still drives.Thank you for mentioning Namenda, I'll mention it to her Dr and I'll check out the
archives for Dr. Boeve's "Continuum" paper.
Thanks again,

Wed May 19, 2010 4:47 pm
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