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Re: More Questions??

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Hi Sherry,

> Question??

> ... at the Mayo Clinic. So I checked into it and we finally got an

appointment for mom to be seen at the clinic. .. What type and who are

the doctors that your LO are seeing???? Isn't there a special clinic

or study group for this disease...

(answer)

Most of the studies currently involving LBD people are in conjunction

with either Alzheimer's research or Parkinson's research. The Mayo

Clinics are a good choice for people with LBD, and will likely also

know of any research studies in your area.

> Question??

.... When my mom has these weird spells and gets terrified it is as if

she is still asleep but walking and talking and recounting to me

verbatem of what she saw...

(answer)

One of the sleep disorders common in LBD is REM Behavior Disorder

(RBD), where during REM sleep people physically and verbally act out

their dreams. I'm not sure if this is what's happening with your mom,

but the Mayo Clinics have some of the leading sleep experts for LBD,

so be sure to mention it at your mom's appointment.

> Question??

> What is the cause of death with this disease???

(answer)

Similar to Alzheimer's and Parkinson's, usually some type of

infection, pneumonia, etc.

> Question??

> Tried the Oxybutalan with the Sinemet.. Better bladder control but

> more halluciantions of more people all the time now.

(answer)

Oxybutynin is in a class of drugs called anticholinergic, and they are

typically not good for LBD (can cause dementia-type symptoms and

hallucinations). This class of drugs works opposite of the

Alzheimer's drugs like Aricept.

> Dad is so sad he is trying so hard to take care of her and it is

> heartbreaking as you all know when the LO starts accusing you of

> these awful things. When she is cognitive she is so sorry...And very

> sad herself...She just can't figure out what is happening...

You brought back memories; my mom would feel so bad, after the fact,

when she did things that were contrary to her sweet nature. I'm sorry

your dad is struggling, and I know how heartbreaking it must be. Have

you checked into local services that could help, like day programs for

your mom or respite care? Good places to find resources and help are

your local Alzheimer's Association and Area Agency on Aging.

> there doesn't seem to be anything out there that really helps with

> the hallucinations. Or what is the next drug that we should try?

Any suggestions.

If your mom isn't on one of the Alzheimer's drugs (Aricept, Exelon,

Reminyl), that would be good to try. Aricept helped with my mom's

hallucinations.

Peggy

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Peggy explained:

Oxybutynin is in a class of drugs called anticholinergic. . .

************************

WOW - I never knew that Oxybutynin is anticholinergic!!! I will have to do

some research to see if there are any bladder " control " meds that are not

anticholinergic although I doubt it. I know that Detrol is also bad for

people with dementia. . .

Thank you SO much for this information!

carol

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