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 New from Oregon 
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Joined: Mon Feb 14, 2011 10:22 pm
Posts: 190
Location: Portland, Or
Post New from Oregon
I am the primary caregiver for my 78 year old mother, Marion. I have lived with her for the past 10 years. She was diagnosed in February after a very scary 6 months of rapid onset of confusion and hallucinations. She had a severe case of shingles last July and several months of post shingles pain. She was prescribed Lyrica which made her very confused and extremely sleepy so I stopped that medication. Then we went to a pain specialist to schedule a nerve block ( thank God it wasn't done as I'm sure the anesthesia would have been an irreversible nightmare!) She was then tried on Gabapentin and I came home from my part-time caregiver job (which I've since had to quit) to find her in the kitchen with half the refrigerator contents out on the counter because she was going to make grilled cheese sandwiches and soup( the unopened soup can was in a pan on the stove) for her and my grandmother, who has been dead for 25 years! The next night she called 911 and told them we were holding her here against her will ( I had put a motel "flipper" lock on the front door so she couldn't wander away in the middle of the night)! Needless to say, I immediately took her off the Gabapentin and went back to her PCP.
I am so thankful that he is familiar with Lewy's because that was his first suggestion. She had also been having a Parkinsons-like tremor for a couple of years.
We were sent to very delightful neuro-psychologist who diagnosed her with probable LBD. That was the day she told my sister and I that we have an apricot tree growing in the living room, like it's the most natural thing in the world.
I don't want to make this too long, so will try to wrap it up here. Mom also has CHF and diabetes, had a quadruple bypass 9 years ago and had a broken left ankle that didn't heal correctly so has used a walker at home for the past two plus years ( we use a wheelchair when we go out of the house). I am one of TEN children ( eight living) and I am so grateful that I am able to stay home and care for my mom. I am 56yrs old and was a medical receptionist for several years and a Radiology Assistant for 20 years before that. I've been reading the forum for a couple of months now and finally got the nerve to write this.
The really good new is that my mom had been on Zyprexa for several years ( she's been having hallucinations for at least 5-10 years, usually at bedtime), and we took her off it about two weeks ago and her confusion and hallucinations have been markedly improved!
Thanks for being here!! Ellen

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Ellen 59, caregiver for mom Marion 81,dx LBD Feb 2011


Thu Apr 28, 2011 11:59 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: New from Oregon
Ellen,

Amazing to hear about the improvement after removing the Zyprexa!

BTW, the nerve block is supposed to be the preferred method of anesthesia but I think you are right to avoid anything if possible. What's your mom taking now for pain relief?

You said she's been having hallucinations at night for 5-10 years. Are the ones now at all times of the day?

As you've been lurking for awhile, have you read suggestions that you check out Dr. Boeve's "Continuum" paper from 2004? Is your mom taking an AChEI (Aricept, Exelon, Razadyne)? That would be Dr. Boeve's first line of treatment.

Robin


Fri Apr 29, 2011 12:06 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: New from Oregon
Welcome, Ellen!

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Fri Apr 29, 2011 12:15 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: New from Oregon
Ellen, welcome to the forum! You've come to the right place for support and information. God bless you!

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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.


Fri Apr 29, 2011 12:17 am
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: New from Oregon
Ellen, Welcome, I'm sure you'll find lots of support and caring caregivers who understand. It was interesting that your mother no longer takes Zyprexa. We are trying to lower Frank's dose of Zyprexa, it's only been 4 days but because his day to day flucuates so, I'm not sure if his zombie like, state is due to the lower dose or just a flucuation. Due to the cost of Zyprexa I hope this works out for us. We are already in the donut hole.
Take care,
Gerry

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


Fri Apr 29, 2011 4:52 am
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: New from Oregon
Welcome, Ellen, to a corner of the world that has saved my sanity. Its a wonderful place full of amazing, kind, caring peole,
Ger xxx

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cared for Dad who passed away on January 28th 2013 R.I.P.


Fri Apr 29, 2011 6:21 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3365
Location: Vermont
Post Re: New from Oregon
Hi Ellen - so sorry for your need to be here but you will find lots of info. and support for what you are going through. As you know from having reading the posts for a while that this is a place where we've all "been there, done that" and have LOs in various stages of the disease. Don't be afraid to vent, ask questions, whatever you need. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Fri Apr 29, 2011 6:58 am
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Joined: Mon Feb 14, 2011 10:22 pm
Posts: 190
Location: Portland, Or
Post Re: New from Oregon
Robin- yes Mom's hallucinations used to be only at night, and was usually a unicorn and her mother, then last fall she started having them all hours of the day or night, and usually people. We've kept our sense of humor through it all so far, I remember one day she said my grandma ( her mil) was standing by the lamp and said " she looks like hell, she looked a lot better last week when she was by the TV!" She saw a baby a lot, and always asked us who was babysitting.
I was having computer problems so wasn't able to access Boeve's continuum until a couple of days ago, but will start reading it today.
By the way, she was only on 2.5mg a day of the Zyprexa and had been on it for years so I was really surprised at how dramatic the difference was when she quit taking it.

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Ellen 59, caregiver for mom Marion 81,dx LBD Feb 2011


Fri Apr 29, 2011 11:13 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: New from Oregon
Ellen,
I would like to add my welcome to the LBDA forums, sorry for then need but glad you decided to join in after reading for awhile.

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Irene Selak


Fri Apr 29, 2011 8:58 pm
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