Parkinson's Disease Tulip


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Old 07-24-2009, 04:56 AM #1
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Default pdonlineresearch - links and comments

There are so many now. But i think there are people who might like to look at this one and keep going from there.

http://www.pdonlineresearch.org/gran...ar-disease-u01

paula
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Old 07-24-2009, 12:27 PM #2
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Originally Posted by paula_w View Post
There are so many now. But i think there are people who might like to look at this one and keep going from there.

http://www.pdonlineresearch.org/gran...ar-disease-u01

paula
Paula,

I'm glad you posted this. I wanted to start a thread really just to be able to thank Debi and the MJFF for starting this exchange. Whenever I feel down that research seems to go nowhere, I am heartened by this effort that encourages researchers in a creative, free-form exchange of ideas. Fantastic!

Now if we could just get a database of patient characteristics, self-medication practices, and histories together. I feel strongly that this is really a missing link. There is so much focus on the biochemical aspects of PD that I really feel we're missing a qualitative aspect that might provide a clue to epidemiology. For example, how many of us have lost sense of smell, how many experienced REM sleep disorder, how many of us have suffered prior head injury, etc.? There HAS to be some common links that give some clue to the environmental aspects of the disease. 23andme is a nod in the right direction but does not go far enough in its survey, IMHO.

Laura
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Old 07-24-2009, 12:43 PM #3
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How about posting this in the Sticky about useful sites and resources.
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Old 07-24-2009, 01:19 PM #4
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Default NIH grant

sure i can move it, but why not make it visible for awhile; there is so much. wanting to do something scientific as a poster for the wpc, and wanting contact with the NIH., i clicked few times from my first link and ended up here:
take a look.
http://www.usagrantapplication.org/?tc=go


do you read this to mean we[patients] could apply for this grant? see first link.
ok backing up all links go to the same place so from there find research grants.

conductor 71, i understand that much of the information that you might have in mind will end up in the 23andMe database and Patients Like Me databases. i wanted to do that [collect info in a database] too and it can't hurt to keep a spreadsheet.

all data can potentially be used at the wpc for a poster.Peg and other grant writers - keep us moving ...feel the urgency but not panic or desperation. i Can panic over too much stimulation of just about anythingl we are all very ill and hoping more of the right spirit comes along like rose of his heart..she drfts thru supporting and with suggestions. i love that.

Bob i will have my spit video on u tube tonight, showing why i put it off. i'm going to show the real deal - will probably drop it - and that means curled hands and clumsiness. I will upload to You tube and please remove me from the egghead list.

paula

lots more coming from pdor.

paula
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Last edited by paula_w; 07-24-2009 at 01:42 PM.
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Old 07-24-2009, 01:47 PM #5
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Default Under-utilized resourses

Some smart, young researcher with time on her hands should work out a way to glean meaningful data from patient foeums and lists. PIENO, for example, goes back to 1993. Sixteen years of discussion could yield a lot of clues.
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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 07-24-2009, 05:01 PM #6
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Default topics and interview, short videos or side pictures

off topic sorry
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Old 07-28-2009, 02:15 PM #7
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Default submitted to pdonline research

It seems from the sketchy free articles available that there are connections between hormones, age at natural menopause, and pd.
There are also genes becoming identified.

Hoping for a reply and an attempt to determine if there is much research being done on this apparent connection. Here's a copy of what I sent.
------------------------------------------

My personal history is suggestive of hormones 'shutting down" prior to motor symptoms of pd. I also have a definitive exposure [along with all milk drinkers on at least the island of Oahu in Hawaii in the late 70s and early 80s] to the pesticide heptachlor. They killed the cows upon its' ' discovery'.

I had two children in the 80s, breastfed both for almost two years [nighttime only eventually]. They were born when I was somewhat older. my ages were 33 and 35. i never had another natural menstruation after second child was born, so that became my age at natural menopause.

All occurring in a few years time directly following, my thyroid became hypothyroid, and, along with other symptoms that fit the new picture of possible pre motor symptoms [gastro intestinal, 'didn't feel right' for several years ],pd motor symptoms emerged in my late 30s, - which was in the late 80's. Do these events indicate a pathway shutdown of some type?
The research if I understand it correctly, is saying there is a connection.


here is my question:
I found these links [see below] on age at natural menopause and its' relationship to Parkinson's. Some links were not available, had to be purchased, but what I did find suggests genetic factors and one mentions growth factor as well.
These articles are primarily from research in China. Is this a vastly understudied area? Is anything planned at MJFF or are there current research studies that any of you know of that can move this research along on age at natural menopause and PD? Genetic analysis must be included, as the average person cannot afford it, and what research I read seemed to indicate genetic markers, as well as a connection.

Any information would be appreciated. I have two daughters and my 86 year old father is developing PD symptoms. Naturally, I'd like to learn about gene hormones as possible biomarkers, and this biology seems to suggest a little bit of everything occurring in sequence in a decade following pesticide exposure- late childbirth with extended breastfeeding? early menopause and hypothyroid?
Do pesticides affect the reproductive systems of people like they seem to do in animals?
links below but sketchy.
thank you ,
Paula Wittekind

http://03md.com/md/?q=node/602

http://www.ncbi.nlm.nih.gov/pubmed/18305346?ordinalpos=1&itool=EntrezSystem2.PEntrez. Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.P ubmed_Discovery_RA&linkpos=1&log$=relatedarticles& logdbfrom=pubmed

http://www.modernmedicine.com/modernmedicine/Modern+Medicine+Now/AAN-Hormone-Exposure-Affects-Parkinsons-Risk/ArticleNewsFeed/Article/detail/583505

http://www.ncbi.nlm.nih.gov/pubmed/16919600?ordinalpos=1&itool=EntrezSystem2.PEntrez. Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.P ubmed_Discovery_RA&linkpos=3&log$=relatedarticles& logdbfrom=pubmed
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Last edited by paula_w; 07-28-2009 at 02:32 PM.
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Old 07-28-2009, 02:49 PM #8
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Default The more things change...

Quote:
Originally Posted by paula_w View Post
It seems from the sketchy free articles available that there are connections between hormones, age at natural menopause, and pd.
There are also genes becoming identified.

Hoping for a reply and an attempt to determine if there is much research being done on this apparent connection. Here's a copy of what I sent.
------------------------------------------

My personal history is suggestive of hormones 'shutting down" prior to motor symptoms of pd. I also have a definitive exposure [along with all milk drinkers on at least the island of Oahu in Hawaii in the late 70s and early 80s] to the pesticide heptachlor. They killed the cows upon its' ' discovery'.

I had two children in the 80s, breastfed both for almost two years [nighttime only eventually]. They were born when I was somewhat older. my ages were 33 and 35. i never had another natural menstruation after second child was born, so that became my age at natural menopause.

Is this a vastly understudied area? Is anything planned at MJFF or are there current research studies that any of you know of that can move this research along on age at natural menopause and PD? Genetic analysis must be included, as the average person cannot afford it, and what research I read seemed to indicate genetic markers, as well as a connection.[/I]
Paula,

This is near and dear to me as well. My first and only babe arrived at age 41, this is considered downright geriatric by the medical community. No hormonal intervention was at play. What's odd to me is that I had never been pregnant before despite kinda trying in my early 30's- I wonder if this is some sort of clue. Lo and behold, a study was just published on late fertility and PD- it indicates a LOWER likelihood of PD. Sigh.

According to the study:

During 8 years of follow-up, women who were fertile for more than 39 years were 24 percent less likely to develop Parkinson's disease than those who were fertile for less than 33 years.




Kudos to you for registering at PD and jumping in with patient experiences! I'm too intimidated by all the PhD's.

Regards,

Laura

Edited: Thanks again for the research, Paula. I realized that I missed your first link (thought I connected to all) and duplicated your post- same good stuff, different site.

Last edited by Conductor71; 07-28-2009 at 05:24 PM. Reason: Giving credit
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Old 07-28-2009, 04:25 PM #9
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Laura,
Please dont be intimidated by degrees, you know PD and its effects better than any one who hasnot experienced but just read about them.
Just yesterday, I bought a coffee mug that says
"When your BS doesnot get you a job go for Ph.D!"
There is some truth in there!!!!
Girija
PS: My fellow Ph.Ds, apologies if I offended anyone! I thought it was funny!

"Kudos to you for registering at PD and jumping in with patient experiences! I'm too intimidated by all the PhD's.

Regards,

Laura[/QUOTE]
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"Thanks for this!" says:
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Old 07-28-2009, 05:57 PM #10
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Default no pressure but ......

why not him? He could go gleaning for sixteen years of discussion. i don't mean to bug you, would enjoy what you have offered this community and only you can explain you on the inside.

peace,
paula

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Some smart, young researcher with time on her hands should work out a way to glean meaningful data from patient foeums and lists. PIENO, for example, goes back to 1993. Sixteen years of discussion could yield a lot of clues.
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