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 Hello from the Beautiful Commonwealth of Kentucky 
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Joined: Wed Mar 09, 2011 12:22 am
Posts: 75
Post Hello from the Beautiful Commonwealth of Kentucky
My name is Debra, 52, and Chris is my dh, 64, who was dx with LBD just two weeks ago. It has been a long and tough process to get a diagnosis. 7 Months ago he was working a full time job, driving his own car, downloading stuff into the computer and then into his Ipod....That was July 2010. In August he had a bad cold and had a period of confusion/disorientation and got lost in his car. Ended up in the ER where they could NOT find anything wrong with him, but admitted him for an eval. In about 3 days he became agitated, aggressive, upset, uncooperative, refused to come home and said he hated us all. Went to psych...put on risperdone....finally released, but started to digress rapidly....long story short....We went through several dx of vascular dementia, alz, PSEUDO dementia, etc. Finally we got someone to listen to us when we told them he had too many new parkinson's symptoms and it looked just like a cross between alz and park. Then they listened. Today, he sleeps much of the time...is becoming less and less verbal...and is totally confused. Dr said he would be immobile in about 8 weeks. It is a sad sad story.

~~Debra

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~~Debra, 52, wife to Chris, 64 DX Vascular Dementia 9/10; Alz 10 or 11/2010; Pseudo Dementia 01/11; LBD in 03/11..Was at home until 4/29, 2011, now in a Alz fac./dementia unit.
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Wed Mar 09, 2011 1:04 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Hello from the Beautiful Commonwealth of Kentucky
OMG, Debra! I hope he's not still on risperidone! It's usually really bad news for Lewy and nearly killed my husband.

Oh, but please let me extend a warm welcome to you! Sorry you have to be here! :cry:

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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 Mar 09, 2011 1:13 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Hello from the Beautiful Commonwealth of Kentucky
Debra,

I'm sorry to hear about your husband. I hope his quality of life can improve. Please consult Dr. Brad Boeve's Continuum paper from 2004 on lbda.org. Risperdal can be tolerated by some with LBD, not all. The two preferred antipsychotics are Clozaril and Seroquel.

I wonder if he was taking anticholinergic cold medication and that's what kicked off the downward spiral in August 2010....?

Robin


Wed Mar 09, 2011 1:15 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Hello from the Beautiful Commonwealth of Kentucky
Debra,
Welcome to the LBDA forums sorry for the need and for the spiral down so quickly for your husband. Risperdal is a drug that caused us many problems and was not tolerated well and I believe it caused many issues in the future in our case.

Visit us often, there is much information and comfort here, please visit the LBDA.org

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Irene Selak


Wed Mar 09, 2011 4:48 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
Post Re: Hello from the Beautiful Commonwealth of Kentucky
Debra - I am so sorry. You both are so young and it's so hard to see someone so young and healthy decline so rapidly. I'm glad you found us here and hope you find lots of support and info. here. It was a lifesaver for me as primary CG for my dad who died in Nov. Welcome and 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.


Wed Mar 09, 2011 11:53 pm
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Hello from the Beautiful Commonwealth of Kentucky
Welcome, Debra. Sorry for your need to be here, but as a newbie myself, I can say with my hand on my heart that this forum is a lifesaver. It is like having a whole new family to help you just when you need them. God bless you and your husband on this journey.

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


Thu Mar 10, 2011 5:22 am
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Hello from the Beautiful Commonwealth of Kentucky
I'll second that, Ger. I've said more than once that this forum has saved my sanity!

Debra, welcome! I am sure you will find lots of helpful information and understanding friends here.

Julianne


Thu Mar 10, 2011 9:22 am
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Joined: Wed Mar 09, 2011 12:22 am
Posts: 75
Post Re: Hello from the Beautiful Commonwealth of Kentucky
Thanks Y'all! He is off the Risperdone. He has been off it for more than 8 weeks now...but he is still declining. In the last few days he is sleeping more and more, both day and night. His personality seems to be disappearing. He is more and more confused and is needing more and more assistance with everything.
~~Debra

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~~Debra, 52, wife to Chris, 64 DX Vascular Dementia 9/10; Alz 10 or 11/2010; Pseudo Dementia 01/11; LBD in 03/11..Was at home until 4/29, 2011, now in a Alz fac./dementia unit.
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Thu Mar 10, 2011 2:56 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Hello from the Beautiful Commonwealth of Kentucky
Debra, I confess that I used to think steep decline was bad. Very bad. I did everything I could to try to prevent it. But now, after more than nine years with Lewy, three years of constant delusions, increasing disability [dependent in all ADLs now] I wonder if a steep, swift decline isn't better. You are both so young and it's so sad but when I see what my dear husband has had to go through--and still goes through!-- with this dreadful disease I sometimes think a quicker end might have been kinder. God bless you both!

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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.


Thu Mar 10, 2011 3:56 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Hello from the Beautiful Commonwealth of Kentucky
mockturtle wrote:
I sometimes think a quicker end might have been kinder. God bless you both!
Dear, dear Pat.... I agree and admit that I feel blessed in some ways. I know you understand. I wish you were on this journey with me - I feel somewhat guilty that I can't take you along. Does that make sense?

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Thu Mar 10, 2011 4:01 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Hello from the Beautiful Commonwealth of Kentucky
Yes, Leone, it makes sense.

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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.


Thu Mar 10, 2011 4:50 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
Post Re: Hello from the Beautiful Commonwealth of Kentucky
I'm totally with you on the swift end to this terrible journey. I wouldn't wish this sort of existence on my least favorite person! It was hell watching my dad deteriorate like he did, and compared to the time some of you have been dealing with this awful decline, he went relatively fast (18 mo.) Sending peaceful thoughts your way today, 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.


Thu Mar 10, 2011 8:05 pm
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Joined: Thu Dec 02, 2010 1:44 am
Posts: 93
Post Re: Hello from the Beautiful Commonwealth of Kentucky
Leone, Pat, I understand how you both feel. It has been such a long journey for us and still he goes on and on. I envy all who will not have to endure Lewy for this long. Watching Fran decline little by little is heart breaking. Hugs, to you both. Bernie


Thu Mar 10, 2011 8:16 pm
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