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 Newly Diagnosed - Patient - 56 yrs - Male - Me 
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Newly Diagnosed - Patient - 56 yrs - Male - Me
Lynn,
thanks for the welcome.

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Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Wed Mar 30, 2011 9:12 pm
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Newly Diagnosed - Patient - 56 yrs - Male - Me
Just got on and found your posts. Welcome to our group. You will find it helpful, I'm sure.

I am so glad you are beginning to post. There are few persons experiencing the illness that post, and I am very interested in hearing your perspective of what is happening.

There is a book by Dr. Thomas Graboys called LIFE IN THE BALANCE that explores his experience with the illness. It is a good read and I recommend it.

Smiles, Nan
Husband, Del, (74) diagnosed with PDD last summer. Has had severe symptoms for the past 5+ years. Now in later stages.


Wed Mar 30, 2011 9:54 pm
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Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post Re: Newly Diagnosed - Patient - 56 yrs - Male - Me
BayouCajun:

Were you living in St. Tammany during Katrina? And then moved to TN?

What an experience THAT was, and we weren't even in the flooded areas. We were in Covington, which got it less than Slidell.

I am impressed that you are facing this head-on with the goal of making it easier for your family rather than being in denial.

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Gail, 70,[color=#80BFFF][/color] married 47 years to Charlie, 71. Recently[size=50][/size] placed in excellent memory care facility.


Wed Mar 30, 2011 11:57 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Newly Diagnosed - Patient - 56 yrs - Male - Me
Gail,

Are you in MT? there must be a story there….maybe we can start a Louisiana off topic post? Louisiana can be a lot of fun….we have to remember the fun...

Yes I was in Covington. I had just moved in to my new brides house. I had just sold my house on hyw 433 in Slidell on July 5th…it had 14.5 feet of water pass under and thru it, of course it was 12 feet in the air….we had over a dozen trees down in Covington, not much damage…

But, my job was outsourced to India a year later, so we moved to TN.

So, to continue my story…I was performing still at the top of my game for almost a year after moving to TN….then big problems…I was working a big project at work and my wife and I was rehabbing a house to flip…and I just fell apart…sleep, cognition, pain and a whole lot more….

then I spent the next three years trying to save my job…and keeping my part time business going...while sacrificing my life and just about all interaction with those around me….

I am sure all of you caregivers experience something like that…..the patient tries to maintain the pace of life they were used to and can't do it….and the priorities we pick are not understood by those around us….and I am sure we don't the priorities right often…and now I am beginning to see why…

I will tell you…yesterday was a rough day….between side effects of aricept and the overwhelming realizations of all of this…thanks….you all are great...

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Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Thu Mar 31, 2011 12:45 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Newly Diagnosed - Patient - 56 yrs - Male - Me
BayouCajun wrote:
He is 28 has no children and working a military support contract for two years. He left for Europe between the time that I had an indication of Lewy on a PET scan and the day that I got a diagnosis. This is troubling for me…to think it would be possible that I would not see him again for his job…and then because of me I might not recognize him the next time I might see him.

BC, I suppose that it is possible you won't recognize people at some point, but I wanted to point out that that isn't typical of LBD. Most people with this form of dementia don't lose their memories of people or names. It happens, I suppose, but not as common as in other forms. No one in my local support group has had that problem. We are often asked by outsiders, "Does he still know who you are?" And the answer for all of us, is "Yes." Coy had a couple of days early on where I had to explain who I was and he didn't recognize his daughter, but that was 2 days out of eight years. You may not, at some point, remember what you had for lunch or even that you had lunch, but you are still likely to remember your son and other people in your life.

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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


Thu Mar 31, 2011 7:47 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Newly Diagnosed - Patient - 56 yrs - Male - Me
OTOH, Capgras Delusion is quite common in LBD, where the person thinks his/her spouse is an impostor, at least off and on. It's a delusional symptom rather than memory loss.

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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 31, 2011 7:52 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Capgras delusion
I always had to smile when Dale said something to me like, "Are you ladies going to stay here tonight."

I never had the feeling that he didn't know who I was. His daughter came to visit exactly two weeks before he died and, at one point that day while his daughter and a nurse were with him and I was in the kitchen, I heard him yell from the bedroom, "I want my wife!" He felt he was in the presence of strangers. He would not allow the nurse to examine him.

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


Thu Mar 31, 2011 8:17 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Newly Diagnosed - Patient - 56 yrs - Male - Me
I have a lot of fears, and a lot to learn, I forget what I am doing, I start the motion to do something and forget what I wanted to do….sometimes something as simple as moving my finger to click something on a web page…forget what I was going to click and why….just totally lost in intent….with my finger in the air….

it has been reassuring so far….that I have never been lost as to where I am….I might forget why I am there….but not where….

We just bought a new GPS today….my last one was stolen in front of my house….trying to think ahead…

I know I will get some good info at the seminar on monday at mayo….

that is reassuring about that aspect….remember two weeks ago…I knew nothing about LBD….so AD is different in that aspect in big way?

I was really having a hard time thinking that was the slightest chance that I had seen my son for the last time that I would recognize him…again, I have a lot to learn….THANKS….what a relief….

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Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Thu Mar 31, 2011 11:08 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Newly Diagnosed - Patient - 56 yrs - Male - Me
Bayou, Frank was dx 6yrs ago and at the very beginning he didn't recognize some people, but once on meds, he has always known family members and he's usually the one that comes up with names from the past. He does, at times, thinks there are 3 of me but again, the meds have made that less of an issue.

I appreciate your postings, it will help us to know what our LO is experience. Thank you and all the best to you and your family

Gerry

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


Fri Apr 01, 2011 6:41 am
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