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 Video - Peter Ashley Talks About LBD Diagnosis 
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Video - Peter Ashley Talks About LBD Diagnosis
In this 4-minute video, Peter Ashley talks about being diagnosed with LBD in July 2000. He and his wife began a months-long period of mourning where they viewed LBD as a death sentence, not knowing how it was going to develop over time.

He discusses learning who his real friends are. He can no longer play the piano. He openly admits having "single incontinence": "why should I mind admitting it," he asks.

Now, he says he's "living with dementia," not "dying with dementia." "All I'm interested in now is living with the condition and doing the best I possibly can to insure that people can do the same," he says.

The video was made in 2009 by the UK-based Lewy Body Society (lewybody.org).

http://www.youtube.com/watch?v=s0_7sojlQms


Sat Feb 05, 2011 7:12 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Video - Peter Ashley Talks About LBD Diagnosis
He had LBD for nearly nine years and he was still that cogent? :shock: Amazing!!!

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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.


Sat Feb 05, 2011 7:39 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Video - Peter Ashley Talks About LBD Diagnosis
It is amazing.


Sat Feb 05, 2011 8:58 pm
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Video - Peter Ashley Talks About LBD Diagnosis
Makes me wonder about his diagnosis. Nan


Sat Feb 05, 2011 9:32 pm
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Joined: Thu Dec 02, 2010 1:44 am
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Post Re: Video - Peter Ashley Talks About LBD Diagnosis
I find it hard to believe that he has LBD, or could the date of diagnosis be incorrect? Bernie


Sat Feb 05, 2011 11:08 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Video - Peter Ashley Talks About LBD Diagnosis
He reports on the date of his diagnosis in the video.


Sat Feb 05, 2011 11:10 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Video - Peter Ashley Talks About LBD Diagnosis
Yes, it is amazing. And yes, it does kinda make you wonder about the diagnosis. Coy continues to do well in the early stage, and he was diagnosed in June of 2003. Dr. Brad Boeve assures us that the diagnosis is correct -- he is more than 90% confident of the diagnosis. Of course, that can only be confirmed post mortem, so we'll see.

The Lewy Body Society is lucky to have Mr. Ashley on their board.

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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


Sat Feb 05, 2011 11:14 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Video - Peter Ashley Talks About LBD Diagnosis
Dale was one of those who could look objectively at his disease... for so long. If we had had an earlier diagnosis than 2009, he would have been writing a book about it. The symptoms were there but we had no one to accurately recognize them. (Maybe that's still true.)

It seems hard to believe at this point .. since we are now heavily into the 'dementia' part - but, other than wearing a condom catheter at night, Dale was quite normal for a very long time. He read books and we travelled. He continued to do his workouts in his gym. I thought he might be that way for years and years.

The past two months have taken me completely by surprise.

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


Sun Feb 06, 2011 7:47 am
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Joined: Sun Oct 21, 2007 4:18 pm
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Location: Acton, MA
Post Re: Video - Peter Ashley Talks About LBD Diagnosis
Leone, I am also very surprised how quickly Dale has declined. I look at Frank and it seems his mind is going to be completely gone and still be strong physically.

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


Sun Feb 06, 2011 10:11 pm
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post Re: Video - Peter Ashley Talks About LBD Diagnosis
Yes, Gerry.... I'm caught in a whirlwind.... That's for sure. Dale's mind is delusional ... He can't obey physical instructions. His legs don't obey his brain. He is still eating but clearing his throat often. I suspect that soft food are next. He chokes on large pills.

He was a sleep walker most of his life. I keep wondering if that is a clue to what is happening now.

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


Sun Feb 06, 2011 10:30 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: Video - Peter Ashley Talks About LBD Diagnosis
You raise an interesting point, Leone. Dale had a very functional early stage, but it only lasted something like nine months -- from diagnosis. But it is possible his early stage was really much longer than that, because he may have had the condition for a long time before it was diagnosed.

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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


Sun Feb 06, 2011 11:53 pm
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Joined: Sun Aug 29, 2010 5:46 pm
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Post Re: Video - Peter Ashley Talks About LBD Diagnosis
Leone, I have been following all the dramatic changes with Dale over the past couple of months and just want to say I am so sorry for what you are going through. It must be such a shock to see this sudden decline. Also, I think you are doing a marvelous job of adapting and doing what needs to be done for him.

Hang in there, and take care of yourself, too!

Julianne


Mon Feb 07, 2011 12:26 am
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