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 A peek preview of unpublished research 
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post A peek preview of unpublished research
Today we had our annual visit at the Sleep Center. Dr. Carlos Schenk is fabulous and that is always a nice experience. We've been seeing him for about 30 years. I asked if they still felt that RBD was closely tied to LBD. He said that he is collaborating now on a paper with Brad Boeve. They are more convinced than ever that RBD, Parkinsons, and LBD all involve the presence of "Lewy bodies" in the brain, and that RBD leads to either Parkinsons or LBD. The evidence they had in their last paper, in 1996, was suggestive, but now that they have many, many, more brain samples to learn from they are more certain of the connection. This study was of males over the age of 50. (I hope that someone, somewhere is doing a comparable study with female brain samples.) These men had RBD, and 81% of them developed Parkinsons or LBD. The other 19% also had Lewy Bodies in the brain. That they hadn't shown clinical signs of either disease may simply be that they died of other causes before it developed that far.

81%! Holy cow!

If I understood correctly, this study focused on men with documented RBD. I wonder about LBD (or Parkinson) cases where the Lewy bodies apparently did not cause RBD symptoms before the onset of the other disease. But, one thing at a time, I guess.

The purpose of the visit wasn't to discuss research, of course, so this was just an interesting aside. I don't know when the study will be published or how many brains were studied.

This information does absolutely nothing for Coy, of course. But we are fervently hoping that every increase in knowledge of how the brain works and ways in which it fails will reduce the chances that our 12 grandkids and 8 (so far) great-grandkids will ever go through what Coy is going through or what I am going through.

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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


Tue Jan 18, 2011 10:00 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: A peek preview of unpublished research
Jeanne, I am hoping too that our children and grandchildren will be spared this awful fate. Too late for our LOs, alas. :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.


Tue Jan 18, 2011 10:37 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: A peek preview of unpublished research
Sorry for the dumb question but I have lost track of this abbreviation--what is RBD?

Thanks,

Julianne


Tue Jan 18, 2011 10:56 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: A peek preview of unpublished research
RBD = REM Behavior Disorder (REM = Rapid Eye Movement)

It is characterized by the sleeper acting out his (or her, but I think it is somewhat more prevalent among men) dreams, and having a particular kind of dream. Usually the dreams involve being chased by (or sometimes chasing) bad guys or animals. While this is going on the dreamer's legs may move as if running, and the arms may flail or punch the bad guys. Unfortunately the bed partner often gets in the way of punch. :oops: In "normal" sleep, the dreams are much more varied than this, and the sleeper is "paralyzed" and does not act out the dream. In addition to bruising me, my husband has thrown himself out of bed with his wild swings. We are certainly glad that this is so easily contolled by a drug. That little white pill saved our marriage (or at least saved sleeping in the same bed.) :lol:

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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


Tue Jan 18, 2011 11:11 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: A peek preview of unpublished research
Dale was a sleep walker since his 20s and did more than punch me. I was never hurt seriously but I was always fearful that I would get hurt. He often got out of bed and would do something like run into a door while completely asleep.

He still has dreams about running. I can tell when his legs are in a bicycle motion.

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


Tue Jan 18, 2011 11:28 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: A peek preview of unpublished research
Thanks for the info, Jeanne!

Julianne


Wed Jan 19, 2011 12:03 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: A peek preview of unpublished research
I can't remember, Leone, does he take Klonopin?

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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


Wed Jan 19, 2011 12:16 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: A peek preview of unpublished research
I'm surprised to read what you say because RBD isn't associated with Lewy bodies. It's associated with alpha-synuclein. MSA is not a Lewy body disorder but it's an alpha-synuclein disorder. PD, DLB, and MSA can all have RBD.

Boeve and others from Mayo have published a lot of data about RBD. Is the 81% figure new news?

You might check out this research that shows that many learn about their spouse's RBD on their wedding night!
viewtopic.php?f=14&t=2626


Wed Jan 19, 2011 12:38 am
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: A peek preview of unpublished research
I thought that abnormal deposits of alpha-synuclein that form inside the brain's nerve cells are called Lewy bodies. ?? So I don't understand what the difference between a Lewy body disorder and an alpha-synuclein disorder would be. I'll bet you can enlighten me, though.

Yes, from what Dr Schenk said I undertood that the 81% is considerably higher than percentages based on smaller sample bases.

You are getting a layperson's summary of a brief conversation with a researcher. I could very well have misunderstood or mixed up the message. Time will tell, when the paper is published, I guess.

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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


Wed Jan 19, 2011 12:51 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: A peek preview of unpublished research
As I understand it, Lewy bodies are made up of alpha-synuclein proteins.

_________________
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 Jan 19, 2011 1:24 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: A peek preview of unpublished research
Robin, are you familiar with this 2004 article by Boeve, related to RBD?
http://jgp.sagepub.com/content/17/3/146.full.pdf+html

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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


Wed Jan 19, 2011 2:00 am
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: A peek preview of unpublished research
JeanneG wrote:
I can't remember, Leone, does he take Klonopin?
No, Dale does not.

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


Wed Jan 19, 2011 8:18 am
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: A peek preview of unpublished research
Have you ever discussed his running dreams with his doctor? Klonopin is effective for that in something like 90% of all RBD cases that are treated. Coy's been taking it for more than 30 years.

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


Wed Jan 19, 2011 9:29 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: A peek preview of unpublished research
Yes. Lewy bodies are inclusions of alpha-synuclein. But alpha-synuclein can exist without Lewy bodies being formed.


Wed Jan 19, 2011 10:40 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: A peek preview of unpublished research
I see. Thanks for the explanation, Robin. That makes sense.

In the 2004 article (page 9) Boeve refers to Lewy bodies being found in RBD brains. Yesterday Schenk referred to Lewy bodies in the RBD brains in the study being readied for publication (and this includes RBD victims who did not develop LBD or PD). So apparently it is not only alpha-synuclein pathology, but specifically Lewy bodies that their research is pointing to.

You mentioned before that RBD is only a supportive symptom in the diagnosis of LBD. Here is what Boeve says in the 2004 article:
Quote:
RBD is regarded as a supportive feature for the diagnosis of DLB, although some now view RBD as a core diagnostic feature for DLB.


It doesn't surprise me that views of this disease are changing, and probably will continue to change for some time. That is what the research is about, isn't it -- expanding what is understood. The entire process is slowed by the fact that it requires autopsies. If noninvasive ways are discovered/developed to see what is present in the brain, that would be a huge leap forward for research.

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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


Wed Jan 19, 2011 10:59 am
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