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 Brain Donation 
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Brain Donation
Robin, can you say where the diagnosis was made, and by whom? Not by name, but was it a GP, a behavioral nuerologist, a geriatric psychiatrist, etc.

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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


Mon Jun 13, 2011 10:12 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Brain Donation
The LBD diagnosis was made by a neurologist who is a movement disorders specialist. He is a PD expert. PD is a Lewy body disease.

It seems to make very little difference what the MD's expertise is...the Lewy Body Dementia diagnosis is *very* hard to get right.


Tue Jun 14, 2011 5:04 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Brain Donation
Wow!

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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 Jun 16, 2011 7:59 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Brain Donation
To the person who contacted me about brain donation last night.... Please check your email. Much to my surprise, brain donation in your city is very easy to arrange. The cost is only $500. You need to decide on a funeral home. Lemme know...


Wed Aug 10, 2011 4:28 pm
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Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post Re: Brain Donation
My husband Charlie died Monday at his residential facility. A week before, he had fallen and was taken to the ER for stitches. He developed pneumonia or something similar and I chose not to treat as he was getting close to losing all quality of life anyway. He slept for a week, with a little help from Mr. Morphine. I was about 10 minutes late getting there, but those wonderful people had become his family and he died in their loving care when three of them were in the room to turn him, which they did every couple of hours. No last gasps or breaths; he just stopped breathing.

While he was too young (71), I wish for all of us such a peaceful exit and am glad he didn’t have to go through what some of your LO’s have.

Robin, on rather short notice, arranged for a brain donation to Jax/Mayo. Very easy in this particular location and cost $500.

I am grateful to Robin for making this opportunity known through the forum and for handling the details. I intended to donate from the beginning, but am surprised at how GOOD it makes me feel now, something positive snatched from the pool of sadness.

Gail


Tue Aug 16, 2011 12:23 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3126
Location: Vermont
Post Re: Brain Donation
I am so sorry for your loss, Gail, but glad he is no longer suffering. It is so hard on everyone, isn't it? You did all you could do to make him comfortable and he went peacefully, and that is good. Take care and stay in touch. 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 Aug 16, 2011 12:32 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Brain Donation
Thank you for sharing that with us, Gail. I'm very glad Charlie's final suffering was not more extended.

I am grateful to you and others who donate brain tissue to support research that we all benefit from.

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


Tue Aug 16, 2011 12:42 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3179
Location: WA
Post Re: Brain Donation
Gail, I am also sorry for your loss but glad Charlie is no longer suffering.

_________________
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 Aug 16, 2011 2:13 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Brain Donation
Gail,
I am relieved to know of Charlie's quick, peaceful exit. And I am grateful to him for the very generous gift of brain donation, and to you for making it happen. And it's wonderful that you feel that something positive came out of the negative. That was our family's feeling as well.
Robin


Tue Aug 16, 2011 6:41 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3126
Location: Vermont
Post Re: Brain Donation
Gail, might I suggest that you post something in the obit. section here? I almost never look at the "brain donation" area and just happened to look here today. There may be others who wouldn't see it here but would in the obit. area.
I hope you are hanging in there ok. I am sure it is a sad time for you. 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.


Tue Aug 16, 2011 7:33 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 699
Location: LA
Post Re: Brain Donation
Gail, I'm sorry for all you and Charlie have suffered but thankful the end was peaceful. May God bless you and be with you in the weeks and months to come. You will hear from Mayo in the near future and we will look forward to know the results whatever the outcome. Thank you both for that gift. With tears, Dorthea


Tue Aug 16, 2011 8:00 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Brain Donation
Gail, Charlie is at peace, you won't have to watch the man you love suffer any longer. Thank you for the donation and hope you share the results with us.
Take Care,
Gerry

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


Tue Aug 16, 2011 8:17 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Brain Donation
Gail,

thinking about you and Charlie…

I want to thank you and Charlie also…

and I remember….you were one of the first people on the forum to talk to me…thinking about you….prayers

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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


Tue Aug 16, 2011 11:21 pm
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: Brain Donation
Dear Gail,
I am so very sorry for your loss and hope that you may be comforted......
Sincerely,
Tonya

_________________
First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Wed Aug 17, 2011 6:26 am
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Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post Re: Brain Donation
The posting on Charlie's passing has moved to the obit forum.


Thu Aug 18, 2011 11:22 am
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