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 New diagnosis...he's 51. 
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Joined: Thu Sep 02, 2010 10:16 pm
Posts: 3
Post New diagnosis...he's 51.
Good morning all,

I am totally stunned after reading what the doctor's gave us on statistics and then to find so many people here. My husband was diagnosed about 3 weeks ago. I have heard of one or the other but never someone having both. I have realized in the last few months just how vicious this LBD really is. It seems to have consumed everyone in the home. We have noticed that the tremors only seem to affect the right side of his body. The mind is hanging in there. He has been lucid for more periods of time.

Last week, the Parkinson's put him in such a state in regards to walking, we had to dust of my mothers walker from her broke leg. This week the tremors have slowed and he can walk on his own short distances. He knows enough that he is agitated with his body and mind. However, the more important stuff I keep to myself in order to keep him from being over stressed. All of this is new to both of us. Any and all information is appreciated. I have done a lot of reading but this does not help as much as those going through it.

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Stacy 37 caring for Steve 51--married in 2009 together since 2000


Tue Sep 07, 2010 9:55 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: New diagnosis...he's 51.
First of all, welcome to the forum! You've definitely come to the right place. The moderator can also direct you to the Yahoo LBD Caregiver Spouse forum, a private forum just for spouses. It has also been a lifeline for me.

You are right that just reading about the disease is of little value, either in practical measures or in encouragement. Caregiving for someone with Lewy is uniquely challenging and you need to hear from others who are going through it.

God bless you! I'm sure you will find this and the other forum a wellspring of support and information.

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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.


Tue Sep 07, 2010 3:36 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: New diagnosis...he's 51.
Hello and welcome to the LBDA forums, sorry for the need!

Here is the link for the caring spouse group which is a great support group and has helped many people , also lets you know you aren't alone in this.

Please visit the LBDA.org website, you can put in a question in the search bar.
Visit often!

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Irene Selak


Tue Sep 07, 2010 4:55 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: New diagnosis...he's 51.
Irene, I don't see the link.

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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.


Tue Sep 07, 2010 5:46 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3311
Location: Vermont
Post Re: New diagnosis...he's 51.
Welcome to the forum - it's a very supportive and informative place to come. Sorry for your need to be here. 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.


Tue Sep 07, 2010 9:09 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: New diagnosis...he's 51.
I also welcome you to the forum. I learned, shared, and even had some good laughs the 3 years I've been reading and posting. It's a place to vent, you know that everyone understands what you're going thru. Your husband is so young, it turns your life upside down. Keep yourself strong and healthy, it will help as you head down this 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.


Wed Sep 08, 2010 7:05 am
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Joined: Wed Aug 25, 2010 9:48 am
Posts: 7
Location: NC
Post Re: New diagnosis...he's 51.
I am so sorry for you needing to be on here. Many blessings as you learn to deal with this disorder.

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


Sun Sep 19, 2010 8:12 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: New diagnosis...he's 51.
For anyone interested in the caring spouse support group here is the link and it can also be found at the LBDA.org

http://groups.yahoo.com/group/LBD_caringspouses/

Sorry Pat I didn't see your reply!

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Irene Selak


Sun Sep 19, 2010 8:43 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: New diagnosis...he's 51.
Thanks, Irene. I avoid posting links as I don't believe it is encouraged [except by moderators :P ].

_________________
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.


Sun Sep 19, 2010 10:06 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: New diagnosis...he's 51.
Pat ,
Links are fine as long as it has to do with the subject !

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Irene Selak


Sun Sep 19, 2010 10:43 am
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Joined: Thu Sep 02, 2010 10:16 pm
Posts: 3
Post Re: New diagnosis...he's 51.
Thanks for the encouragement. I have been trying to get back here to do research, but this is the first morning that I have been able to do this. I look forward to getting to know everyone, even though it's under unfortunate circumstances.

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Stacy 37 caring for Steve 51--married in 2009 together since 2000


Mon Sep 20, 2010 8:50 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: New diagnosis...he's 51.
I'd recommend finding Dr. Brad Boeve's "Continuum" paper published in 2004. It's on lbda.org. (Use the search tool.) Read it yourself (it's tough going at first) and also provide it to the treating MDs.


Mon Sep 20, 2010 4:23 pm
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