View unanswered posts | View active topics It is currently Wed Oct 01, 2014 9:15 am



Reply to topic  [ 177 posts ]  Go to page Previous  1 ... 4, 5, 6, 7, 8, 9, 10 ... 12  Next
 Brain Donation 
Author Message

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Brain Donation
Yes, he had parkinsonism.


Wed May 04, 2011 10:47 pm
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3377
Location: Vermont
Post Re: Brain Donation
That sure complicated the diagnosis, huh?

_________________
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 May 04, 2011 10:49 pm
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Brain Donation
That must be fairly unusual. Most of the AD people I see [at least in the early to mid-stages] are in pretty good physical condition--no shuffling, stiffness, etc. They walk a lot. I always assumed AD doesn't include PD symptoms.

_________________
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 May 04, 2011 11:46 pm
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Brain Donation
Given how many DLB cases turn out to have autopsy-confirmed AD, I wouldn't say it's unusual at all. I assume many of those people have parkinsonism.


Thu May 05, 2011 12:06 am
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Brain Donation
robin wrote:
Given how many DLB cases turn out to have autopsy-confirmed AD, I wouldn't say it's unusual at all. I assume many of those people have parkinsonism.
OK--since PD is a Lewy-body disease, why wouldn't someone with Parkinsonism have Lewy bodies in their brain??

_________________
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 May 05, 2011 12:30 am
Profile

Joined: Tue Aug 24, 2010 1:45 pm
Posts: 35
Post Re: Brain Donation
DUKE Med Cntr also has a brain donation program that includes a free autopsy. I'm not sure about any charge for recovery from other sites.
Tom joined their research program after being diagnosed with LBD (on his intial visit) with his 2 great Drs. James R. Burke-Director Memory Disorders Clinic and Burton L. Scott-Movement Disorders Clinic. I know the memory clinic has a pamphlet on it. You also might contact Ron Nelson, Tom's research project co-ordinator -- e-mail ron.nelson@duke.edu

_________________
Kathy, 63, wife & caregiver of Tom, 64 dx 2007 (later stage) lives in dementia care facility in Durham,NC


Thu May 05, 2011 10:43 am
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Brain Donation
mockturtle,
There are many disorders that have parkinsonism as symptoms where Lewy bodies are not present.
Robin


Thu May 05, 2011 11:03 am
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Brain Donation
You are right, Robin, and Mayo lists the following:
Stroke
Encephalitis, inflammation of the brain usually caused by infection
Progressive supranuclear palsy, a rare degenerative brain disorder
Multiple system atrophy, a degenerative disorder that destroys nerve tissue
Corticobasal degeneration, a rare neurological disease
Certain medications, such as some antipsychotics and metoclopramide
Head trauma, isolated or repeated, such as injuries sustained in boxing

But I don't see AD on the list.

_________________
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 May 05, 2011 12:35 pm
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Brain Donation
There are many pathologies that can occur in the brain that are not part of any lists for laypeople because these pathologies don't have disorders associated with them. Example: pigment-spheroid degeneration of the basal ganglia.

Further, it's impossible to answer the question "what pathology in the brain definitively accounts for parkinsonism" when there are so many overlapping pathologies and there isn't a lot of research into pathologies that don't have disorders associated with them. The neuropathologist makes an educated guess.

Same thing for "what pathology in the brain definitively accounts for dementia?" Lots of pathologies and not much research into some of them.


Thu May 05, 2011 2:07 pm
Profile

Joined: Sun Aug 26, 2007 9:44 pm
Posts: 118
Location: Nashville, Tn
Post Re: Brain Donation
My husband, Ron, died in February and had turned 60 2 weeks before his death. I was able to get the Neurology Department at Vanderbilt to do a brain autopsy (at no charge to me) for research. But that was because Ron was a patient there and we were local and it could be done quickly. The neurologist called me a couple of weeks ago and said that the LBD evidence was so clear and advanced that they are going to use the slides to teach about LBD in their medical school. Maybe some good will come from this after all. Cheryl D. Baird


Fri Jun 10, 2011 9:55 am
Profile

Joined: Sun Aug 26, 2007 9:44 pm
Posts: 118
Location: Nashville, Tn
Post presence of Lewy Bodies in brain
Robin, Ron and I went to a presentation (obviously when Ron was alive) and we were told that Lewy Bodies are found in brain of all patients with Parkinsons.... just not in the same area of the brain as LBD.... not that it matters..... I just thought that was an interesting fact. Cheryl


Fri Jun 10, 2011 10:00 am
Profile

Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Brain Donation
Cheryl, Yes, that certainly is a valuable contribution to the education of medical personnel. In fact any brain tissue donated for research, no matter the outcome, makes a valuable contribution to the knowledge base.

Your husband was quite young to have advanced LBD. I am sorry for your untimely loss.

Dr. Carlos Schenck (of RBD fame) has also mentioned that Lewy bodies are present in Parkinson's patients.

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


Fri Jun 10, 2011 10:07 am
Profile

Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Brain Donation
Cheryl, Thank you for sharing. We have been living with LBD, we think, for several years now and although it won't make a difference in the end, I want to know IF, it is LBD. Just as our girls were checked earlier for breast cancer our children or grandchildren may benefit from knowing what their father had, or should I say, what had their father.

Fondly, Gerry

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


Fri Jun 10, 2011 10:00 pm
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Brain Donation
Cheryl,

Sorry for the delay in replying. I've been away on vacation and then had a big Lewy Body Dementia event this last Friday (70 people). Actually, I wasn't even aware that the Forum was live again.

I'm glad you were able to get an autopsy done on your husband's brain, and at no charge as well. Getting a verbal report via the neurologist on the neuropathology in 3 months seems OK. Have you received a written report? If not, I'd ask for one.

There's actually no pathological diagnosis using the phrase "Lewy Body Dementia." (To pathologists, the acronym "LBD" probably means Lewy Body Disease.) The pathological analysis, just as you've stated, looks at how many Lewy bodies there are in the brain and where they are. "Diffuse Lewy Body Disease" would be the most severe Lewy body pathology in the brain. The LBs are in the cortex of the brain. Parkinson's Disease is also a Lewy Body Disease. Often, people who have had PD for decades develop PDD and are also found to have "Diffuse Lewy Body Disease" upon brain autopsy.

It's nice that Ron's brain slides would be used to teach Vanderbilt medical students. Who was Ron's neurologist at Vanderbilt and do you recommend him?

I don't believe Vanderbilt has a brain bank any more (they used to) and they don't publish Lewy Body Dementia research.

Robin


Sun Jun 12, 2011 7:31 pm
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Brain Donation
Another family just received their neuropathology report, and shared the results with me. Yet again, not a single Lewy body was found in the brain, despite the LBD diagnosis during life. This disorder is *really* hard to diagnose accurately.


Sun Jun 12, 2011 7:34 pm
Profile
Display posts from previous:  Sort by  
Reply to topic   [ 177 posts ]  Go to page Previous  1 ... 4, 5, 6, 7, 8, 9, 10 ... 12  Next

You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
Powered by phpBB © 2000, 2002, 2005, 2007 phpBB Group.
Designed by STSoftware for PTF.
Localized by Maël Soucaze © 2010 phpBB.fr