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 Lifestyle studies 
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Joined: Mon Mar 21, 2011 11:26 pm
Posts: 49
Location: St Pete Beach, FL
Post Lifestyle studies
Hi everyone,

My father has LBD and I've been his caregiver for the past year. I recently move him into an Assisted Living Facility (one specializing in dementia care) and this has given me time to start researching the science behind this disease. I'm very happy to see this subforum and want to thank everyone who posts here.

I have just spent the last few hours reading various posts here and the linked articles, and I'm very impressed with the amount of research being done to discover the cause and develop a treatment. I feel I know now about alpha-synuclein and its aggregation that results in the formation of Lewy bodies, as well as other technical, molecular information—even if it is sometimes beyond my comprehension.. However, there don't seem to be any studies that have compared the lifestyles of LBD patients to see if there are any commonalities. Why is that?

In thinking about my father and what environmental factors might have contributed to his developing LBD, many things come to mind:

1. He owned and worked in a drycleaners most of his life, exposing himself to chemicals.
2. He had a bad diet most of his life, eating fast food quite often.
3. He has had type II diabetes since his mid-forties.
4. He was a body-builder and took various supplements right up through his sixties.

As most diseases are a combination of genetic and environmental factors, why isn't there more research looking into the long-term, past lifestyles of people with LBD? I've spoken to some friends about this, and they have pointed out that pharmaceuticals don't make money by discovering environmental causes and recommending preventative measures. Instead, they focus on the molecular level with the intent on treating the disease in people after they have acquired it. Perhaps this plays a role. However, it would seem to me that discovering patterns in the lifestyles of LBD sufferers would be helpful to everyone, even the pharmaceuticals.

For example, my father took a lot of body-building supplements as well as "life extension" supplements. Some of these have concerned my sister and I for years, and we regularly told him we didn't think they were good for him. He was always so prone to the wild claims in magazines. One of them he took often was "nitric oxide," which upon further research may actually be "nitrogen dioxide," but in any case some of the research I just read here implicates various nitric acids in LBD via its ability to truncate alpha-synuclein proteins making them prone to aggregation. Could my father's years of taking this supplement have contributed to his getting LBD? Perhaps, but the only way to know is to look closely at the lifestyles of large numbers of LBD patients.

Keep in mind that comparing the lifestyles of LBD patients with controls (people of similar age who do not have LBD) may not be as helpful as simply collecting various lifestyles factors of LBD patients and looking for trends within the affected population. This is because diseases are often caused by a combination of genetic factors with environmental triggers. And one thing we know for sure that everyone with the disease at least shares a genetic predisposition (or else they would not have gotten the disease). And to be clear, I am not talking about the cases in the literature that we know are clear-cut genetic or inherited cases, caused by a particular malfunction in tao-coding. These cases are a clear exception. Rather, I'm talking about the majority of cases where Lewy bodies form. These majority cases also involve some kind of genetic predisposition, with contributing environmental facts that led to the type of gene expression that resulted in lewy bodies (alpa-synuclein aggregation, etc). So looking into the past lifestyles (diet, chemical exposure, stress levels, etc) of a large body of LBD patients may be revealing. Have any studies like that happened? And if not, why not? I imagine it would involve extensive questionairres given to family members.

Anyway, thanks for reading this and I look forward to hearing your responses.

Emanuel


Sat Dec 03, 2011 3:11 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Lifestyle studies
Emanuel, my husband was a research chemist so obviously was exposed to various compounds during his career. My grandfather's second wife owned and operated a dry cleaners for many years and had Alzheimer's Disease late in life. Who know? There is is supposedly some evidence of farm workers exposed to pesticides having a higher risk of PD. I haven't read anything recent regarding that.

_________________
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 Dec 03, 2011 5:11 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3432
Location: Vermont
Post Re: Lifestyle studies
It will be interesting to see what environmental factors (if any) contribute to this disease. My dad was not exposed to chemicals through his job, but he was a real junk food junkie all his life. He did live in a major farming area where there is a huge cluster of cancer patients, presumably from the chemicals sprayed on the farm fields in the county for many years. Who knows? There is certainly a lot of stuff in the air, water and food that didn't used to be there. Scary! 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.


Sat Dec 03, 2011 5:24 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Lifestyle studies
Emanuel, I would like to see such studies, too. A study of people who already have lbd or other chronic conditions would involve a LOT of self-reported memories. I think it would be extremely hard to get accurate life-style histories of people looking back on their lives, or having their relatives do it. Are we going to discover that this person used steroids in his early 30s? I couldn't even remember the drugs prescribed for me 8 years ago in a chaotic period of my life when a doctor recently asked me about them. If I were unable to remember clearly, I don't think there is anyone in my life who could say what my freqency of fast-food use is now and was in the past. I'm just not very trustful of a backward looking analysis of lifestyle factors, other than gross elements, like occupation.

A forward-looking study, starting with a large group of people who are now, say, in their thirties, and who show up for an annual life-style assessment might be very useful when the group enters their 60s and 70s and later, to see if there are differences among those who develop dementia and those who don't. Very useful -- but very long-term. The crisis is upon us. Answers 40 years from now will be awsome, but we also need more immediate treatment plans.

Maybe I'm naive, but I don't think research is solely driven by the pharmecuetical companies.

_________________
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 Dec 03, 2011 8:10 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Lifestyle studies
I would like to see more studies related to prior head trauma. I know my husband had a cricket-related head injury when young. Since he was a 'fast bowler' [like a pitcher, in baseball] I assume the injury was caused by a hard-hit cricket ball. He doesn't remember much about it [he never did].

_________________
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 Dec 03, 2011 9:48 pm
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Joined: Thu Apr 21, 2011 9:07 pm
Posts: 247
Post Re: Lifestyle studies
Emanuel, the challenge is that you really need to do prospective studies, as Jeanne says, and also get post-mortem to ensure accurate diagnoses. There are several large-scale ongoing studies that have uniformly ascertained life history prior to onset of cognitive decline, annual clinical exams, and nearly 100% autopsy participation: the Religious Orders Study and the Memory and Aging Project, for example, led by researchers at Rush in Chicago. They have not looked, so far as I know, at predictors of onset of LBD, as the initial focus and funding were for AD, but I think there is considerable interest building in doing so, as more data accumulate.
Laurel

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


Mon Jan 09, 2012 1:21 am
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Joined: Tue Feb 06, 2007 8:35 pm
Posts: 51
Location: Toronto, Canada
Post Re: Lifestyle studies
Emmanuel, I like what you're proposing. Since LBD patients would have a "History" charted somewhere, why couldn't someone do a meta-analysis based on their charted History (which usually comprises Past Medical History, Past Surgical History, Family History, Social History, Medications, etc.) as reported in the patient charts? Geez, even a senior in university would be able to do that much. I know my mom's initial blood test results were quite interesting (dehydrated and deficient in B12). Couldn't hurt and might lead the way to further venues of research???? We all know the drug companies fund research into drugs, so maybe a social services research fund could be an unbiased grant source...just felt you could be onto something. Thanks!

_________________
Dale
[My dear, Mom, Beatrice, (born in 1929) was diagnosed with LBD in Dec 2006. She passed away peacefully on July 12, 2013 at Embassy Hall, Shannex, Quispamsis, N.B.]


Sun Jan 15, 2012 7:23 pm
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Joined: Tue Aug 30, 2011 1:42 pm
Posts: 108
Post Re: Lifestyle studies
My 13 year old is very interested in this whole issue of epigenes (genes that are dormant unless triggered by environmental factors - which explains how you can have identical twins in which one has autism and the other doesn't). I have to thank NOVA for all it has done to turn my 13 year old into a science nerd (love it!). It is my understanding that something like that is going on here (of course no one knows for sure). It seems to me that environment studies combined with tracking genetics would be very very useful in shedding some light on this horrible disease. Recording histories is something that we could all possibly do on this forum. Speaking with folks who are doing research on DLB about which pieces of ethnographic data would be of interest to them might be useful in setting up such a project, though.

Liz


Fri Jan 20, 2012 1:36 am
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Joined: Thu Jan 14, 2010 2:40 pm
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Location: California
Post Re: Lifestyle studies
Epigenetics is fascinating!! The study that showed how a granddaughter's genes can be affected by what her grandmother witnessed is just amazing. What it tells me is that what we experience can affect our offspring - not just cultural beliefs but our genetics. I have often wondered about the nightmares my husband has: as far as I know he never experienced horrific situations but being a Native American descendant, might explain what looks like PTSD night terrors.

_________________
My husband's first diagnosis in 2006 at age 64: Early Cortical Lewy Body Disease. He passed in Oct. 2013 at age 71. Autopsy indicated evidence for late-stage Alzheimer's only. NO Lewy Bodies were found in the hemisphere of his brain that was studied..?


Wed Jan 25, 2012 5:50 pm
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Joined: Tue Aug 30, 2011 1:42 pm
Posts: 108
Post Re: Lifestyle studies
Yes that is fascinating.

On the NOVA they discussed that issue (I am guessing that some of you saw it too). The famine in Europe in which the grandparents struggled as children and how it genetically impacted their grandchildren. My own mother, who has DLB, is someone who has been chronically anxious her whole life. Both of her parents were orphans who grew up with very insecure lives. It is interesting to wonder how that might have impacted her disease in all ways - physical, mental, genetic.

Liz


Thu Jan 26, 2012 12:52 pm
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Joined: Tue Feb 06, 2007 8:35 pm
Posts: 51
Location: Toronto, Canada
Post Re: Lifestyle studies
Interesting thread! My mother also suffered a very impoverished rural childhood in NB and only received a Gr. 9 education. She struggled all her life and always seemed rather paranoid to me. I used to wonder why she suspected people of incredible motives.

_________________
Dale
[My dear, Mom, Beatrice, (born in 1929) was diagnosed with LBD in Dec 2006. She passed away peacefully on July 12, 2013 at Embassy Hall, Shannex, Quispamsis, N.B.]


Thu Jan 26, 2012 3:05 pm
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Joined: Wed Feb 15, 2012 11:39 am
Posts: 98
Location: Victorville, CA
Post Re: Lifestyle studies
I'm very new to this scary journey and just getting started with my research and can tell you that my husband spent a large percentage of his childhood living and working on a farm.

_________________
Terri, spouse of John, officially DX dementia with Lewy Bodies, June, 2012, cognitive symptoms since 2007, active dreams for years before that.


Tue Feb 21, 2012 10:06 am
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