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Hi Everyone, since my mom has been home now exactly 2 weeks she is not having

any hullucinations. She gets up every morning and dresses herself. She is eating

and drinking. She is on 2 excedrins when needed and seraquil at night. When we

ask her how she is feeling she says that she feels dumb. At night is her worst

time, she hurts all over but not bad. She gets up several times to go to the

bathroom. Mom still can't be left alone but she is back to her old self ,

yesterday she got dressed and sat on the porch. Hospice still comes out 2 times

a week and she refuses to talk to them. She says that they followed her from the

hospital and that they were mean and gave her bad meds. This is a far cry from

her being sent home to die. Her memory is very clear and she wants to go places

now. This has been a miracle. I just wish that people could find your site

sooner to become educated on LBD before the quacks at the hospitals kill them.

I know that we are probably at a lull in her disease but her quality of life for

now is wonderful. Now we have the choice to decide on her care. I'm not in

denial but thankful that we have more time to make a plan for her disease. Thank

you everyone. Freda

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Freda,

I am so glad your Mom is improving at home and off all the bad meds. Good

news too that the family were able to get her in with these top

neurologists at IU and Mayo. I hope they will take good care of her.

Maybe she will be able to stabilize at or near this level for a while. Are

you the one caring for her at home or who is in charge of that hands on

care? At least your brother was persuaded somehow to let her out of that

horrible hospital situation to go home. Glad Mom surprised all by

improvement!

Best Wishes,

Pat M.

wife/caregiver of Bob, dx 2003 PD, 2009 LBD

> **

>

>

> Mom will be seeing a group of research drs from IU as a out patient. Dr

> Farlow was ranked top 20 nerologist in country and he is working with Dr.

> Mathews from Mayo clinic My brother still is not convinced.

>

> ________________________________

>

> To: " LBDcaregivers " <LBDcaregivers >

> Sent: Sunday, January 8, 2012 10:39 AM

> Subject: Re: mom

>

>

>

>

> So good to hear this news! Are you able to persue a good LBD savvy

> neurologist and is brother a believer yet? We used 2 extra strength Tylenol

> every 6 hours for my mother in laws pain at the advice of her neuro and

> that worked good for a couple years. I always told my mother in law she was

> not dumb or stupid (she said she felt dumb or stupid many times in the last

> 6 months) but rather the illness is causing these things. It was a little

> relief for her that she suddenly hadn't turned into a dummy.

>

> Just wishing you and your mother and family all the best

>

> - Dorothy

> from cell phone

>

>

>

> > Hi Everyone, since my mom has been home now exactly 2 weeks she is not

> having any hullucinations. She gets up every morning and dresses herself.

> She is eating and drinking. She is on 2 excedrins when needed and seraquil

> at night. When we ask her how she is feeling she says that she feels dumb.

> At night is her worst time, she hurts all over but not bad. She gets up

> several times to go to the bathroom. Mom still can't be left alone but she

> is back to her old self , yesterday she got dressed and sat on the porch.

> Hospice still comes out 2 times a week and she refuses to talk to them. She

> says that they followed her from the hospital and that they were mean and

> gave her bad meds. This is a far cry from her being sent home to die. Her

> memory is very clear and she wants to go places now. This has been a

> miracle. I just wish that people could find your site sooner to become

> educated on LBD before the quacks at the hospitals kill them. I know that

> we are

> probably at ! a lull in her disease but her quality of life for now is

> wonderful. Now we have the choice to decide on her care. I'm not in denial

> but thankful that we have more time to make a plan for her disease. Thank

> you everyone. Freda

> >

> >

>

>

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Dear Freda,

Wonderful news!!!

Regards,

Helene in NY

>

> Hi Everyone, since my mom has been home now exactly 2 weeks she is not having

any hullucinations. She gets up every morning and dresses herself. She is eating

and drinking. She is on 2 excedrins when needed and seraquil at night. When we

ask her how she is feeling she says that she feels dumb. At night is her worst

time, she hurts all over but not bad. She gets up several times to go to the

bathroom. Mom still can't be left alone but she is back to her old self ,

yesterday she got dressed and sat on the porch. Hospice still comes out 2 times

a week and she refuses to talk to them. She says that they followed her from the

hospital and that they were mean and gave her bad meds. This is a far cry from

her being sent home to die. Her memory is very clear and she wants to go places

now. This has been a miracle. I just wish that people could find your site

sooner to become educated on LBD before the quacks at the hospitals kill them.

I know that we are probably at a lull in her disease but her quality of life for

now is wonderful. Now we have the choice to decide on her care. I'm not in

denial but thankful that we have more time to make a plan for her disease. Thank

you everyone. Freda

>

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