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Re: My Sister

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Hi ,

My mother is experiencing so many of the things your sister

is. My mother didn't get LBD until a year and half ago when

she was around age 85. She is 87 now. Your sister seems

young going through this, but have read here LBD doesn't

discriminate against age. I hope you can keep your sister

out of a nursing home, but I know my mother could of never

started out in assisted living as it seems 9 months ago when

I was looking at one, they told me if she had to go to the hospital

I had to drive her and also drive her to the dr. office. Which

was impossible for me. It seems there is not enough " nursing "

care in assisted living as in a 24 hour nursing home situation.

Which my mother has to have, even though, like Imogene, had

problems with several N.H.'s it is hard to find the right one

to give the proper care. Sometimes I get so frustrated with

this one feeling they are " useless " ! It seems they do the bare

minimum and that's it! I'm up there every day and its a

nightmare most days I go up there with one thing after another.

Hang in there, as I try to do, and praying for your sister, its

horrific when our L.O.'s hallucinate and are terrified out of their

minds with what they are seeing or believing when its not even

true. God bless them all.

Love and PRAYERS, in Texas

My sister, 74 years of age, was diagnosed w/parkinson's severals ago and

put on meds for parkinson. A couple of years ago she started seeing people in

her house, seeing black lace around things especially curtains. She was

never afraid of these people but couldn't understand why they were in her

house. In November early one morning she left her home barefooted and walked

down the road about 1/2 mile before someone got to her. She was in the

hospital for approximately three weeks and was diagnosed with LBD. They have

taken her off all parkinson's meds because of the possibility of increasing

the hallucinations. She is now living in a very nice assisted living

facility. They have tried Seroquil, Risperdal, Ativan,Paxil and everything

works

against her. They are now going to try Abilify. I see her going down every

day. She was a very independent woman who lived by herself for close to 20

years. Now she is terrified to be alone, very parnoid. She thinks they a re

making movies about her, bugging her room, monitoring her phone calls, etc.

She was able to get up and down from the chair and coach by herself, but

these last few days she has to have assistance. Her feet seem to " freeze "

when she tries to walk. We ask her to move her feet, but she says she can't.

It is so troubling to see her go through this and not know what to do and

knowing the doctors know little as to what to do. The doctors thinks she is

probably mid-sage. I go see her most days twice a day and we have sitters

during the night. Every day there is something new going on. Today she was

complaining of legs and neck pain. She has just about quit eating. We have

to sit and encourage her to eat what she does. She has lost 18 pounds in

about three months.

Can anyone help us know where were are with this awlful disease or any

medication that seems to work. I know everyone is different. We want to keep

her out of the nursing home as long as possible, but I'm not sure how long

she will be able to stay at the assisted living.

Any help would be greatly appreciated.

Thanks

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  • 3 months later...
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Hi

Would you give me the name if the appetite stimulant?

That sound like a great idea

Thanks

Donna

>

> Just an update on my sister. She seems to be doing much better the last few

weeks. She is eating great. They have her on an appetite stimulate. I have read

a lot about the roller coasters of LBD, so I keep wondering if this is temporary

good time and what may follow. She still complains of constant pain, gets

irritated on occasion, and the hallucinations are also occasionally, nothing

like they were. So we're enjoying the better days right now.

>

>

>

>

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That is wonderful to hear . I have learned to really enjoy the

good periods when they come, they are what gets us through the tough

times!

--

His,

Sherry

daughter/guardian of , dx 4/09 with LBD, living in a nearby NH

> Just an update on my sister. She seems to be doing much better the last few

weeks. She is eating great. They have her on an appetite stimulate. I have

read a lot about the roller coasters of LBD, so I keep wondering if this is

temporary good time and what may follow. She still complains of constant pain,

gets irritated on occasion, and the hallucinations are also occasionally,

nothing like they were. So we're enjoying the better days right now.

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