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 Another newbie 
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Joined: Sun Jul 31, 2011 11:25 pm
Posts: 12
Location: NY (state, not city)
Post Another newbie
Hello,

Well I just put a post in the Caregiving Tips section that I hope you will comment on, but I thought I'd introduce myself properly as well.

My dad (67) was just diagnosed with LBD -- well really he needs to go see one more specialist to rule out a parkinsons-plus disorder, but in all likelihood he has LBD, and even if not I'll probably stick around because this forum seems like a good resource for all of those related disorders.

We first noticed little things after my dad had a root canal or something last summer. He developed a weird grimace and was slurring his speech. We thought the dentist had hit a nerve. A later MRI showed no signs of stroke and he seemed to be slowly getting better, so we didn't worry too much. He had some trouble finding the word he wanted, but nothing more than a pause.

Then in May he had a big scary episode. He didn't recognize my mom, he didn't recognize the house,etc. Since then his symptoms have become very apparent -- hallucinations, paranoia, vision problems, some memory problems, drooling, trouble with easy everyday tasks -- pretty much something new every day it seems like.

First two doctors we saw were basically useless. Finally saw a specialist who made the diagnosis. So that's where we are. Really glad to have found this resource, really helpful to see everyone else going through the same thing.

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Courtney, 27, helping to care for dad, 67, dx July 2011


Mon Aug 01, 2011 12:17 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Another newbie
Welcome. I think you've found a good source of information and support. Caregivers here are providing care for parents and spouses. There is a fairly wide age range. Some give care full time, some from afar, some in a secondary role. You may not find a situation that matches yours exactly but you will find elements that are common to what you face. I am so sorry that you needed to be searching for this kind of site, but I welcome you and look forward to exchanging posts with you.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Mon Aug 01, 2011 12:32 am
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Joined: Sun Jul 31, 2011 11:25 pm
Posts: 12
Location: NY (state, not city)
Post Re: Another newbie
Thanks Jeanne. You always seem so cheerful in your posts. I hope I can find a way to pull that off.

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Courtney, 27, helping to care for dad, 67, dx July 2011


Mon Aug 01, 2011 12:44 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Another newbie
Commgirl, It sounds like your father plunged into Lewy at the deep end, with a whole host of symptoms developing over a very short time. That is how it happened for my husband, too. Coy is now at the shallower end, with much less severe symptoms than he started with. This isn't common, but it is not unique, either. I talk about a theory explaining this here:
http://community.lbda.org/forum/viewtopic.php?f=4&t=2946&hilit=Mayo

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Mon Aug 01, 2011 2:36 am
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Another newbie
You are welcome. I know you will find lots of help and advice here. Post often,
Ger xx

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cared for Dad who passed away on January 28th 2013 R.I.P.


Mon Aug 01, 2011 6:26 am
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Another newbie
Your mom will also need support with the care of your dad. She may want to join also, just to let her know that what she sees is "normal" with this disease. I think I would be in Lewy land myself if I hadn't found this forum. Welcome, hang in there, it's a long bumpy road.

Take Care,
Gerry

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


Mon Aug 01, 2011 6:54 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3432
Location: Vermont
Post Re: Another newbie
Glad you found this forum Courtney. It has been a life saver (sanity saver!) for so many of us. I hope you will stop in often. 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.


Mon Aug 01, 2011 9:01 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Another newbie
Courtney,
Welcome to the LBDA forums, there is tons of information here that I hope you will find useful !

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Irene Selak


Tue Aug 02, 2011 7:39 am
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