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Joined: Mon Sep 15, 2008 5:37 pm
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First I want to say thank you from the very core of my being. I moved in with 87 yr old Dad 7 months ago to "take over" for brother who was caregiver for Mom w/Parkinsons and then stayed with Dad for the grieving. Seems Dad had been minimizing symptoms for a while, brother didn't have the slightest idea. The muddle I had to get through to get to a diagnosis was only relieved when I found LBDA and this forum. Living in Orlando area we found Shands Clinic at UF Gainseville to finally hit the bullseye. Now he has been on Seroquel for two weeks and ramping up Siminet for one and a half. Tolerating it well enough except for hot flashes during "Sundowning". This is to enhance quality of life and he was losing mobility fast, so it's a good band aid for now. So I think I am in the thick of early stages but I don't have so much fear. I have used the LBDA and forum for the past 3 or 4 months and I wanted to post finally to thank Jim and Robin and Arlene and Many Moons and all of us. I can't imagine how lost and overwhelming this experience might have made my family and me if it were not for you guys. So with you I will trudge ahead into Lewyland grateful and honored to call you friends.
Mark (neuro guy)


Tue Oct 07, 2008 8:14 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Mark (neuro guy),
Thanks for the "thank you." I love your phrase about having no fear. Good for you! And good for your father too. It's very common for a parent's neuropsychiatric problems to only become apparent after his/her spouse is gone. My condolences on the loss of your mother.
Robin


Tue Oct 07, 2008 9:19 pm
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Joined: Thu Oct 09, 2008 12:21 am
Posts: 7
Post Sister with Lewy Body Disease
My name is Gwen.

My sister was diagnosed with "possible" LBD in 2005.
That was quickly changed to manic depressive with phycosis then
changed back again in 2008 to LBD.

I won't take up a lot of space, I just want to say that the forum has helped a great deal in exposing this dreadful disease. The one thing I
definitely agree on is that most physicians are not aware of how to treat it.

While treating her for MD w/phycosis, she was prescirbed a great deal of drugs ,only to find out none worked for her. She was taken off of most of them after she was diagnosed with LBD(this occured while hospitalized; after a really scary episode)

now she is on the following drugs...
(I hope I am spelling them correctly)
seroquel
lexapro
aracept
nemenda

She is on one other, I can't think of the name at the moment.
I am not my sisters primary caregiver, but very much involved in her care.

My sister is now experiencing the following

cries constantly(starts in the evening)
she talks to someone she only sees
she eats really fast, moves her plate aroud because she says that someone is eating out of her plate
thinking ability is not good
she grinds her teeth
she gets aggressive with her daughter at times.


The only thing that her physician does is remove, add, increase, decrease her medicines when she sees him, he only wants to see her every three months.

My questions are for him on our next visit is

1) The drugs above, are some of them serving the same purpose?
2) shouldn't he see her more often?
3) are there test that should be ran on her quite often to keep an eye on
all of the drugs shes taking?
4) Why haven't we seen a big improvement in her symtoms?(diagnosed for sure in June, 2008 for LBD)
5) could most of these drugs be causing her symptoms?

My question for the forum is...will we be asking the right type of questions?

My sister ask us everyday why we cannot help her, my heart goes out....

Gwen. :cry:


Thu Oct 09, 2008 9:45 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Gwen,
For your sister's sake, you need to find her a replacement physician or an additional physician who can help you. Where does your sister live? Maybe someone here can help you find an MD. Please read Boeve's "Continuum" paper on the LBDA website. It's an excellent resource for MDs to know how to treat your sister's LBD.
Robin


Thu Oct 09, 2008 11:25 pm
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Joined: Thu Oct 09, 2008 12:21 am
Posts: 7
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Thanks for responding Robin, she lives in AL. I am now searching for
Boeve's "Continuum and will reply a little later after I read it. I am anxious to read it now.

Thanks for your help

Gwen


Fri Oct 10, 2008 12:10 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Gwen,

You might consider starting your own introduction rather than linking to Mark's (neuroguy's). Or start a new post in the Treatment Options section or Diagnosis section. (So many choices.....)

There must be others here from AL because my search history indicates that I have searched on the term "Alabama" before. You can do the same search!

I am familiar with Dr. David Standaert at the Univ of Alabama in Birmingham. I've seen him present at several conferences on PD and research/clinical trials. He's a top-notch diagnostician. I'm familiar with his having diagnosed people with CJD and PSP before, so presumably he's up to speed on LBD as well. I'd start there.

And I posted about an AL MD who is presented on LBD at a FL workshop in August '08. The MD is Dr. Richard Powers, director of the Alabama Department of Mental Health and Mental Retardation Bureau of Geriatric Psychiatry. See:
http://www.lewybodydementia.org/forum/v ... php?t=1025

Robin


Fri Oct 10, 2008 1:08 am
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Joined: Thu Oct 09, 2008 12:21 am
Posts: 7
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Thanks so much Robin, before I found this forum, I attempted looking all over the place for other Physicians in Alabama that might be able to help.
I will start with Dr. David Standaert.

I'm sorry I posted in the wrong area, I will post under other topics....thanks again for your help. I have been on my computer now for four hours just reading and researching, I think I better retire for today or rather this morning.

Thanks again Robin.

Gwen


Fri Oct 10, 2008 1:26 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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There's really no right or wrong about posting but etiquette is that neuro guy started this topic so we should be replying to what he's said.


Fri Oct 10, 2008 1:38 am
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Good Morning Gwen,
Welcome to the LBDA forums and glad you have found a place to get some guidance with your sisters illness, what our hope is to have people post their introductions and then move on to the specfic topics it really helps the person posting recieve more opinions.
Alabama has some really good Doctors and if you name a area I could help narrow it a little for you. I think your very first need is to find a Doctor that is willing to work with the DX. Good Luck!


Fri Oct 10, 2008 8:38 am
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