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 New member in west Florida 
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Joined: Mon Mar 21, 2011 11:28 pm
Posts: 26
Post New member in west Florida
First, I want to thank all of you wonderful posters for teaching me everything I know about LBD. My husband was diagnosed with it in February 2010 after a year of misdiagnosis. In the previous year he had 3 episodes of confusion, hallucinations and the delusion that our house was a resort in the mountains to which we had been kidnapped. Doctors and a neurologist gave us various diagnoses from "sometimes this happens", to Alzheimer's or a vague "maybe it 's vascular". In that year he had also developed a shuffling gait. We got a new neurologist and he was prescribed the Exelon patch which has helped tremendously. Complications have been his health; diabetes, a heart by-pass in 2008, two cardiac stents and this January a small stroke. He has recovered a bit from the stroke and is now using a walker. My specific worries right now are a chronic cough/ runny nose, excess saliva problem and I will probably post in that thread and his extreme tiredness. There has also been some obvious cognitive decline. So I am writing mainly to join the group after a year of lurking and to thank you all.

Thu Apr 07, 2011 3:54 pm

Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: New member in west Florida
Lurkers are very welcome here. Not everybody has the time or the inclination to participate other than some reading as time permits. But it is wonderful to have a lurker become a participant. Welcome, Beachdaisy, and I look forward to interacting with you in the other forums!


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

Thu Apr 07, 2011 4:30 pm

Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: New member in west Florida
Beachdaisy, I'll try again, my prev. post was lost in syber space. You mentioned the cough/runny nose, excess saliva :-(. As you can see the drooling is my biggest challenge. The confusion and cognitive state flucuation constantly, it's just part of Lewy. Frank is always tired and dozes off and on most days, and most of the time is in bed by 6:30PM and get up 7:30ish AM. That's if we aren't up half the night with him wandering around the house, wanting to "go home". Life is not easy, but I find reading and posting helps, everyone is in the same boat and support each other. I hope you continue to read and post. By the way WELCOME!

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

Thu Apr 07, 2011 4:39 pm

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: New member in west Florida
A warm welcome! Glad you found us, wish you didn't need us, hope you will stay and feel supported here. Hugs!

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.

Thu Apr 07, 2011 5:27 pm

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: New member in west Florida
Welcome from me too! You probably feel like you know many of us already if you've been on here for a year. Hope we can be of help to you in your journey. Lynn

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.

Thu Apr 07, 2011 6:06 pm

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: New member in west Florida
Welcome to the LBDA forums, glad you finally feel like you want to post and am glad you are as you know from the time you have already lurked there is so much information here, The chronic runny nose sadly comes with the illness for so many.

Join us often !

Irene Selak

Fri Apr 08, 2011 10:30 am
Profile WWW

Joined: Fri Apr 15, 2011 1:54 am
Posts: 4
Post Re: New member in west Florida
Dear BeachDaisy,
A belated welcome, as I just "returned," a lurker as well. I'm on S.E. FL coast, have never been to West FL, though I was actually born in this state, quickly moving away when my Father left U.FL M.B.A. program to support his new Family. I have so little time, energy (you understand, I'm certain) that our one daughter who moved here know so much more, has been everywhere it seems, in a year!
(I returned in 2003 to enjoy warm non arthritic climate! Again, haven't done much of that! Have to laugh or I'll cry.)
In all seriousness, I thought at first the runny nose was Aricept, but when my DH changed to Exelon patch few years back, the runniness continued. This is also the first time, a helpful one, I think, must look into it, that I've read of coughing, which my DH does incessantly. We all remind him to please cover his mouth, though I doubt it's germs.
The drooling is a sometime scary thing at night, especially when it affects his CPAP mask functioning; I just remind my DH to keep tissues for it all.
I hope I can help you, as you have helped me already. My DH is just beginning to actually sleep much, much longer in the day (he's already had 12 plus hours at night about a year now, dx'd in 2006, likely started in 2002-3). I'll watch for you. Best of everything.
Be well,

Wed Apr 20, 2011 8:37 am
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