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 HI! Newly diagnosed here! 
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Joined: Wed Aug 25, 2010 9:48 am
Posts: 7
Location: NC
Post HI! Newly diagnosed here!
I am the diagnosed one and am only 55 yrs old. I am so depressed. my dr's don't want me to work or drive yet I am still fairly functional. :cry: the future seems so grim when I read these stories. I believe I would rather be gone than to end up like so many others. has anyone else dealt with knowing u have this dreadful disease? Paula55

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[b]Paula55[color=#0000BF][/color][/b]


Wed Aug 25, 2010 10:30 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: HI! Newly diagnosed here!
Welcome Paula,
I am sorry for your need to be here but am glad that you found the group, you can't look into others troubles as they might not apply to you and your illness, Finding the correct medications to treat the symtoms is very possible and can help you ! Please check out this link as I think it will be helful for you:

http://www.lbda.org/feature/1942/an-int ... mentia.htm

Also there is a private area for people who themselves have LBD, I will admit it isn't used often but I did want to make you aware of it!

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Irene Selak


Wed Aug 25, 2010 10:46 am
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Joined: Wed Aug 25, 2010 9:48 am
Posts: 7
Location: NC
Post Re: HI! Newly diagnosed here!
how can i join a private group? I'd like to talk to others who have this or loved ones who have experience in the early diagnosed. -Paula55

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[b]Paula55[color=#0000BF][/color][/b]


Wed Aug 25, 2010 10:53 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: HI! Newly diagnosed here!
Paula, I am so sorry to hear of your diagnosis! You are very young to have this awful disease. But even though you are limited in some of your activities you can still lead an active life for many years, if our loved ones are an example. You do need someone to look after you and your interests because delusions and problems with executive function can lead to mistakes that can harm you. I hope you have someone. God bless you, Paula!

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Wed Aug 25, 2010 11:04 am
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: HI! Newly diagnosed here!
Hi, Paula. Welcome to our forum. I would like to recommend a booK to you, written by a man who has Parkinson's Disease Dementia. (When the movement portion of the disorder omes first it is called PDD. When the cognitive portion comes first it is Lewy Body Dementia)

Anyway, the name of the book is 'Life in the Balance' by Thomas Graboys, M.D.
The subtitle is 'A Physician's Memoir of Life, Love, and Loss with Parkinson's Disease and Dementia.' He talks about lots of ways that he has coped with his illness.

I bought several copies and gave them to our children to read.


Wed Aug 25, 2010 11:28 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3341
Location: Vermont
Post Re: HI! Newly diagnosed here!
Hi Paula - welcome, and I too am so sorry that you have this disease. Might there be a support group in your area that you could attend? Has your dr. put you on meds to reduce any symptoms you are experiencing? Sending you giant hugs. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Wed Aug 25, 2010 12:14 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: HI! Newly diagnosed here!
Nan, yes, I have that book, too, and it's good.

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Wed Aug 25, 2010 12:25 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: HI! Newly diagnosed here!
Paula,

You might strike up an email conversation with pubpanda. See:
viewtopic.php?f=11&t=2016

Within that post contains some additional suggestions for finding individuals with LBD.

Robin


Wed Aug 25, 2010 12:39 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: HI! Newly diagnosed here!
Paula,
If you like the MD who did the diagnosing, could you say who that is? This info may help someone else.
Thanks,
Robin


Wed Aug 25, 2010 12:42 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: HI! Newly diagnosed here!
Paula, I too would like to welcome you, one club you never wanted to join but you will find everyone here understands. We'd also be interested in how you feel and are dealing with any symptoms that you have or may have in the future. I can only imagine how Frank feels, he doesn't express his thoughts, I don't know if he's not able or is aware enough to be in denial. Don't look to far into the future as far as symptoms go, eat well, excerise and be sure all financial and legal matters are up to date so you can put that behind you and just take care of yourself. Someone is always checking here, so come often.

Take Care, Gerry

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Wed Aug 25, 2010 1:50 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: HI! Newly diagnosed here!
Paula,
You are now clear to enter private area, any problems please let me know !

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Irene Selak


Wed Aug 25, 2010 3:40 pm
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