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 a possible cluster of neurological diseases? 
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Joined: Sat Dec 05, 2009 7:24 pm
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Location: Northern Minnesota
Post a possible cluster of neurological diseases?
The other day, I ran into an old neighbor at the nursing home, and she inquired what my husband had, and I told her Lewybody, she then told me her husband had died from Lewybody complications about three years ago.

Now she lived less then a quarter of a mile away from us , and another person who lived in her house some time after she had moved, has Parkinson's, and another past neighbor, lived across the road from us, also has Parkingson's. That makes 4 cases of neurological disease, in less than a quarter of a mile.

Can't help wonder if there is a common cause, the water, they were all employed by the same company at some time during their life, or something else no one knows about. Does any one out there know of any other place where so many people have either Parkinson's, or Lewybody, who live, or lived so close to each other?


Thu Jul 07, 2011 12:02 am
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: a possible cluster of neurological diseases?
One of the recent APDA quarterly newsletters (apdaparkinson.org) had a fascinating article by a St. Louis-based researcher who had been given a research grant to investigate geographic clusters of Parkinson's Disease. There are certainly clusters around agricultural areas (well water, pesticides) but there were other interesting clusters as well. You might find the article to see if you are in one of those clusters.


Thu Jul 07, 2011 12:13 am
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Joined: Thu Apr 21, 2011 9:07 pm
Posts: 247
Post Re: a possible cluster of neurological diseases?
There was a very careful study published in Neuroepidemiology in 2010 looking at Medicare data for the years 1995 and 2000-2005 for geographic clustering at the county level (Willis et al, Geographic and ethnic variation in Parkinson disease: a population-based study of US Medicare beneficiaries, Neuroepidemiology 2010 April; 34(3): 143–151.) Full article is at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2865395/ but you might need a subscription to read it. Their conclusion: "Parkinson disease is substantially more common in Whites, and is nonrandomly distributed in the Midwest and Northeastern US." Interestingly, they found it more common in urban than in rural counties. They speculated that industrial toxins might contribute, as well as risk factors with more evidence like pesticides. Could be you are in one of those counties - you can see them on a map in the paper.

As for very small clusters, it's really tricky to try to make any guesses about whether they have a common cause or are just coincidence. Humans are really good at picking out unusual-looking patterns! An example I use in teaching: if you take a package of M&M's and shake them up and dump them out on the ground and then look around, there will very likely be some little groups of the same color really close to each other. ("Oh, look, there are 4 red ones that wound up in this same little space in the grass!") Then if you ask, what's the chance that you'd get those 4 red ones so close together, it might in fact come out to be pretty small... if you hadn't looked for the most striking little group to begin with! But we know that the M&M's were just dumped out at random. It's pretty hard to demonstrate scientifically that a small cluster like that exceeds the odds of just chance, especially for something as common in older people as parkinson's or dementia. Cancer epidemiologists run into this a lot with "cancer clusters". Some are real, but most result from a combination of the "lumpiness" of truly random stuff, combined with our human tendency to look at the "lumpiness" and perceive patterns - constellations in the stars, a cloud shaped just like our dog, a picture of Abraham Lincoln on the breakfast toast, ...

I feel on much more solid ground trying to figure out the evidence on clustering, however, than I do trying to cope with my mom's daily variations in Lewy Land. Sigh. She's squirrelly, my dad is crabby, and I'm feeling like one of those little Welsh pit ponies, pulling the cart full of coal.

Laurel

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Thu Jul 07, 2011 2:49 am
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Joined: Sun Oct 21, 2007 4:18 pm
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Location: Acton, MA
Post Re: a possible cluster of neurological diseases?
The woman that came for Frank's PT lives in a development and said there are 4, I think men, within view of her house that have PD. I don't know how long they've lived there or what they did for work. It does make you wonder.

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


Thu Jul 07, 2011 7:01 am
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: a possible cluster of neurological diseases?
Laurel,
Dr. Willis is the lead author of the article you kindly cited. She's the St. Louis-based researcher I mentioned. The APDA newsletter article for a lay audience is about that research.
Robin


Thu Jul 07, 2011 10:49 am
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Joined: Thu Apr 21, 2011 9:07 pm
Posts: 247
Post Re: a possible cluster of neurological diseases?
Thanks, Robin! I'm glad you pointed us to that research. I started trying to track down the APDA article but found the one in Neuroepidemiology first. I know the AD people at Wash U pretty well but not the movement disorders folks. Seemed like a very well-written article. I will have to watch for more of her work.
Laurel

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Fri Jul 08, 2011 12:16 am
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: a possible cluster of neurological diseases?
I was looking up an article on hallucinations and delusions in PD for a local support group member and found the article I mentioned that is on Dr. Alison Wright Willis's work. See pages 1 and 10:

APDA-Funded research yields Parkinson’s disease variation data
APDA Newsletter, Spring 2010
http://apdaparkinson.org/data/NewsLette ... -11-10.PDF


Thu Jul 21, 2011 4:41 pm
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Joined: Mon Mar 21, 2011 11:26 pm
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Location: St Pete Beach, FL
Post Re: a possible cluster of neurological diseases?
Thanks for posting these articles everyone.

My father is suffering from severe delusions, but not too many hallucinations. My sister and I are at a loss as to what to do. He has not taken any medication yet for any of his PDD symptoms.

Emanuel


Sun Aug 14, 2011 10:00 am
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