Parkinson's Disease Tulip


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Old 08-08-2009, 06:53 AM #1
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Default A Blockbuster Study IMHO

http://content.karger.com/ProdukteDB...oduktNr=224263

Just out a couple of weeks. It seems that the highest rate of PD ever observed, three times the US average, has been found in, of all places, the Amish!

The researchers feel that genetics can be ruled out because the effect was more pronounced among those distantly related rather than those closely related.

So, if we can eliminate genetics, the Amish lifestyle should let us also rule out pesticides, environmental chemicals, possibly stress, the medical system, and goodness knows what else.

There are, however, two things which move to the front. One is the possible autoimmune response to wheat gluten. The Amish eat a lot of it. The other is the possible hypersensitivity to bacterial cell wall toxins (LPS). Somewhere in the archives there is a crude map that I did showing the link between the production of hay crops and PD. Haymaking is terribly dusty work and the dust is laden with LPS.
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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Old 08-08-2009, 01:24 PM #2
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Yes, I read this too. It is quite interesting.

Does question the environmental factor a bit, but on the other had, they are exposed to the same thing in the air that we are all exposed to. They also are seriously exposed to ground water and wells. This part of NYS is also farm county, and of course, the areas the Amish live in is farm country. It is also very hilly, being the foothills of the Pocono mountains, so the water run off is significant when it rains and creeks tend to overflow. (I lived in this area for a few years.)

My younger daughter lives in this south central NYS area too and it is very rural. The Amish population there is probably a minimum 30% and always growing.

The 'Big Three' of Ohio, Pennsylvania, and Indiana...population is 63%. This area of south central NYS is only six or so miles north of the PA state line.
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Old 08-08-2009, 01:39 PM #3
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Rick said, "So, if we can eliminate genetics, the Amish lifestyle should let us also rule out pesticides, environmental chemicals, possibly stress, the medical system, and goodness knows what else."

Not sure you can make this statement; ground water, well water, knows no boundaries. I think you could actually make the opposite arguement, that this study actually is a stronger statement for some sort of environmental trigger. And what could be more stressful than living the Amish lifestyle in 21st century America?
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Old 08-08-2009, 03:09 PM #4
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Default is it Pensylvamia amish?

i remembered this but wasn't sure if it was close enough - looks like it is.

http://www.jstor.org/pss/1385839

http://www.offroaders.com/album/cent...ttractions.htm

we know its poison - of course it is. i'll look for a map. surely google will do that for me, it's in my face about everything else i try to do!

and yahoo sold out to microsoft - none of them are big enough, rich enough or have enough glitches.

aarrrrggghhh!
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Old 08-08-2009, 03:19 PM #5
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Rick: be careful about using words like "rule out". I'm surprised to see words like that coming from a bright guy like you. I hope you will agree and until the cure is found it is unlikely we will determine all possible causes. Incidentally, are you still planning on joining those of us working on a new book? If not, Paula will rule you out--lol bob c
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Old 08-08-2009, 05:33 PM #6
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Default a dozen damaged brains are better than 1

i mean that...all of these environmental sites could be studied and 'ruled out or in.'

i think this is another possibility for a poster with travel...would need a grant - have i mentioned that i was a science fair mother from hell?
oh dear rose, what were those lovely tactful diplomatic suggestions about fundraising let's start in chrono order so first gregd and i need to go to hawaii - there was a class action lawsuit about the milk.

anyone want to contrinbute a private jet. Bill Bell, of you see this - a new one not the one you have been using...lol

my thinking altho it reads like i'm trying to get money and a grant

and a plane..lol.

it's just the beginng- real possilities. between now and the wpc, we could collect a database full of info about toxins - we could as anne wojcicki says in "googling the googlers,' change the world. '

sergey needs to get in to it now....and lend us his jet; we would change his life first - then the world. would he help us find all the toxins and attempt to identify them. study the geography and the pschyology of the areas oh where do i stop..here. listening to Temptations on IPOD. time to move.

none of this is impossible. going back to spirituality - it's all about what you do for others - we are servants and will be taken care of---rick never thought about an underground fire...wonder what the total death toll will be from it? won't ever know..but i'll bet it's of biblical proportions

time 5:15 p.m. sinemet ramble hour..how does one gently but truthfullly try to portrtay to sergey he can't waste any time - he doesn't have as much time as he thinks he does. he needs special inspiration; i'll make another video that should do it...haha....ok think smaller but starting now might help those in their 40s and those who haven't had it long. otherwise starting now may save our grandchildren.

we need to give it the best that we've got.

harley is right, it starts with acceptance.

hey i lost my hormones so long ago i don't know a damn thing about normal emotions....lol....
or if you'd rather just let the scientists. business leaders and other nonpwp fly around in the jets, let's sit around the table and at least contribute to what they could do?
the book may have to be formatted with a word count to add chapters as they happen....just reaching out - motivational fairy dust

i think we need to go out and do it ourselves. there are enough of us to split the workload and have people working on the database and poster.

england where are you...lindy have you spoken with tom i latel?. you know a documentary or heck even software about where in the world is the poison....or the toxic hot spots......how many pwp in the area. damage has already been done. we have to find new ones.


needless to say this is not just for the book group...can't we all just do it? if someone flies us around till we make discoveries and connections, your life will change. i'm so downsizedd i just want the cause - seems we could really help. have townhall meetings and buses to piok up pwp i don[t know.......have you ever heard the first words and noises out of michael jackson's song

"can[t stop till you get enough" or something like that. i always liked his music but never paid much attn to his words. pretty sexy lol...... i am in a stirring up mood but notice now that it takes about 3 days of rest to produce energy to get through cleaning, laundry and producing schizophrenic -like posts in the forum from sinemet overload.

last thought - eric schmit[?] ceo of google wants to collect enough info to enable a computer to tell us what we should do tomorrow....can't we have sergey for a year to mine the earth for a cause of neurologial illnesses. michael, you may come along, you don't take up much space....lol...neither do i .....it's those bodyguards that take up the weight allowance.

we can all dream, but this is a possiility because of google need and resources. they are blessed -use the blessing and change the world,,,in mutlple ways. i don[t even want to have my name used ....others names will draw funding.

ok that was for the real serious doers....going for a lottery ticket. feeling lucky today. my idea of what would be lucky doesn't always agree with the "Man's".
paula

we could start with the Amish. They shouldn't be getting it
.A year well spent i would think.
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Old 08-08-2009, 06:25 PM #7
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Default hotspots & communities

I wondered whether it would be at all useful say to compare a community like the Amish, with their own particulars lifestyles, geographic conditions etc., with say the Parsee community in India, who also have high rates of PD, and are also in some ways similar to the Amish, both communities that are under stress from the outside, and to some extent shrinking in some way. By this I mean that their customs and beliefs are threatened by a fast-changing world in which their long held traditions are less easy to maintain. Just a thought........

I remember reading a scientific article about men who worked in other countries to those where they were born, not as emigrants, but as temporary workers, and the high levels of sudden death from heart attack at young ages. The statistics are there, but no organic cause linked them, just the fact that they were transplanted from their home environments. So these deaths were categorised as being related to emotional stress, even though they were mainly working on contracts up to 5 years........so they were expecting to go home. If these things, dislocation, disassociation from community could cause heart attacks, how does this translate say into communities under stress, which could mean anything from a specific ethic or cultural group, to say a township or city dying from economic issues, or changes in farming practice, add other stressors like chemicals, and PD ............again I really think that the PD register when it materialises, and hopefully there will be ones in many countries, will shed light on issues like these....... we already know that stress is a contributing factor......

Lindy
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Old 08-08-2009, 07:17 PM #8
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Default The Amish Connection

This is all rather interesting, but I wonder if we can look at a small sample size as the Amish, look at their unique lifestyle and water supply (mostly private well) and extrapolate that to the rest of us? Anyone seen or inspired by the film Erin Brokovich, a real life story of a paralegal who took on Pacific Gas after finding residents in Hinkley, CA were ill from exposure to toxic levels of Chromium 6 in groundwater?

Paula...as you were typing, I was thinking similar thoughts (must be the immersion in Google productivity software), and researching.

So who wants to start researching? I venture a guess that we would at least yield some promising data that has yet to even be sought ought through the grant system. All the hours I spent reading Nancy Drew may just pay off

I found this study by the Master Well Owner Network (MWON). Rural PA is second in the nation for number of residents who own private wells which are not subject to EPA regulations. The wells, maintained by the property or land owners, often have inadequate equipment for well water quality. Interesting facts on the Amish in PA and water supply:

from the MWON report: "The voluntary management of private wells is a problem because most health-related pollutants in water are symptomless. As a result, homeowners with private water supplies may be exposed unknowingly to health related pollutants unless they voluntarily have their water tested for the correct water quality parameters"

-focus of study is on PA. While Lancaster County, PA has fewer Amish than OH or IN, it is the only one of these "Amish" states with NO private well water regulations.

-Almost all Amish in central PA drink water from a private well and have relatively high exposures to agricultural chemicals.

-Other types of water treatment in wells, such as oxidizing filters to remove iron, manganese, were far less common, in less than 10 percent of the homes with private wells.

Is there anything to this? Maybe. Are these clues? Most likely, though we don't know if anything meshes together. My concern with looking at water contaminants is that if private wells hold more toxins because they are not regulated, wouldn't it be safe to assume that we're consuming fewer toxins with EPA regulated drinking water?

On the other hand...genetics: a Dartmouth study (MJFF funded) analyzed incidences of Parkinsonism in the Amish population of Holmes County, OH and found strong evidence that the Parkinsonism was hereditary through testing and examination of extensive genealogical records.

http://dartmed.dartmouth.edu/spring0...parkinsons.php

Does this negate Rick's findings? I don't think so, as I still think that the genetics and environmental factors work in tandem.

This goes back to one of my fundamental questions about this disease. This disease is hardly new to the scene; where are the epidemiological studies and why hasn't anyone, until recently, entered data into a database and analyzed it? Oh right, we have Sinemet, we're okay.

-Laura
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Old 08-08-2009, 07:35 PM #9
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Default clusters

I don't think we are breaking any new ground here.

There are already studies on clusters of Parkinson's found in different areas of the country that speculate on what caused it (this was the basis for the study that showed smokers had a lower incidence of PD; it was migrant workers in Eastern Washington). I believe there is a high incidence in Nebraska, for example, which is why they were able to get a registry through there.

Bill Bell's mom was part of a cluster - 5 of 6 homes on a beach cove had Parkinson's in them. Was it a shared well? Shell fish contamination? It is easy to show a coincidence or commonalities; much more difficult to actually prove a causal relationship (like "cigarette smoking causes lung cancer" rather than "there is a higher incidence of cancer among cigarette smokers"). But this is a research design question about level of proof (girija - maybe you can speak to this?)

As far as patient advocacy is concerned, Jackie Christensen has done a lot of work in this area. I will email a link to this thread to her; maybe she can comment.

ALSO - Bill Bell does not have a private jet - the co-founder of the NWPF is a pilot and flies a small 2 seater plane (don't' know if one or two engines); the two of them sometimes fly to visit communities about the work of the foundation.
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Old 08-09-2009, 06:12 AM #10
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Default Maybe a list of possible factors to help

Things that have a plausible link to PD, either as cause or contributatory:

Groundwater contamination
Bathing Habits (Shower vs bath)
Pesticide exposure
Agricultural dust (LPS and Molds)
Prenatal Endotoxins (LPS)
Prenatal Stress
Early Life Stress
Adult Stress
Metals (Mercury, Manganese, Aluminum, Iron, etc)
Genetics
Wheat Gluten
Streptococcal Infection
Food Additives (MSG, nitrites, aspartame)
Vitamin D deficiency
Inflammation/Infection
Vaccines

For the purposes of this list I have left out things that are more part of the process rather than causal (i.e. BBB failure, mitochondrial dysfunction, etc)

What have I left out?
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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