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Re: Rx for Lewy Body

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The decline in her walking makes me think of another possibility. My mother was

diagnosed with Normal Pressure Hydrocephalus (NPH) when she was 75. I'd taken

her for a geriatric assessment because of her memory going downhill and

repeating herself a lot, but the doctors were more concerned about her gait,

which was kind of shuffling. Turns out that this is frequently mistaken for

Parkinson's. I didn't even know that seniors got this, it's something associated

with newborn babies. It's just extra fluid that builds up around the brain and

puts pressure on the brain, affecting cognitive ability and walking. Anyhow, she

had a shunt put into her head that drains the extra fluid into her abdomen. The

idea was to prevent further damage, not to fix what damage was already done.

She was doing fine after this, until a random fall in March resulted in a hip

fracture. She was not the same since the surgery, she is very confused now. It

may have something to do with her brain being in a more fragile state when the

surgery happened (due to her prior surgery on her head). Whatever the reason,

she's not the independent lady she was before her hip fracture.

>

>

> Hello !! I am new . I honestly believe my beautiful Mother has this disease. I

printed infomation for her neurologist and highlighted every single system that

I have witness. Her Doctor said he has never seen anyone who has this and its

not as common as I am to believe. He order a pep-test ..Waiting for the results

.. I am noticing a decline in her walking and she is hallunating more.

> How do I find a Doctor who acknowledges this disease.?..I hope I make sense as

the days seem longer . 

> My husband and I have POA .She lives with us . Been adjustment since we also

have guardianship of 2 of our beautiful granddaughters.

> Right now we have care givers . Not for sure how long . I am checking into

nursing homes . Want to be prepare. 

> Thanks to all who share and for all the infomation that is posted.

> ...Mother has been diagnosed with PA 

> Gods will be done !!

>

> T-Mobile, America's First Nationwide 4G Network

>

> --- Re: Rx for Lewy Body

>

> To: " LBDcaregivers " <LBDcaregivers >

> CC:

>

> Thanks for your input and ideas.  We have tried reducing her Seroquel, but

that has not been with good results.  She does struggle with the violent,

unpleasant hallucinations and delusions.  If they were just benign, we wouldn't

try so hard to find a better solution and just let it be I think. 

> Thanks!

> F

>

>

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Although my mom is not to the point where she does not care about the

hallucinations and delusions, I was talking to the head nurse at her assisted

care facility and she did say that the other person there who has LBD and was

moved to the memory care wing, did go off all her drugs because she had gotten

to the point of not caring and the drugs weren't keeping the hallucinations and

delusions at bay anyway.  I think when my mom gets to that point we will

probably do the same thing unless she is having scary and violent hallucinations

and delusions.  Her pre-medicated state was full of horrible stuff and I would

not want that to come back for sure.  But if she is relatively calm I think I

would try it. I imagine each person responds differently.

F

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Although my mom is not to the point where she does not care about the

hallucinations and delusions, I was talking to the head nurse at her assisted

care facility and she did say that the other person there who has LBD and was

moved to the memory care wing, did go off all her drugs because she had gotten

to the point of not caring and the drugs weren't keeping the hallucinations and

delusions at bay anyway.  I think when my mom gets to that point we will

probably do the same thing unless she is having scary and violent hallucinations

and delusions.  Her pre-medicated state was full of horrible stuff and I would

not want that to come back for sure.  But if she is relatively calm I think I

would try it. I imagine each person responds differently.

F

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