Parkinson's Disease Tulip


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View Poll Results: For people with PD. What is/was your line of work?
I am/was a healthcare worker 9 23.68%
I am/was a healthcare worker
9 23.68%
I am/was a teacher 13 34.21%
I am/was a teacher
13 34.21%
I am/was neither a teacher or a healthcare worker 16 42.11%
I am/was neither a teacher or a healthcare worker
16 42.11%
Voters: 38. You may not vote on this poll

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Old 01-05-2011, 11:29 PM #21
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Hi Paula dear,
I'm not addressing the subject of people recovering from PD or PD drugs in my wild theorizing, but talking about the subject of the thread which YogaLife (hi there! welcome, and hope you find something useful on this board) started, which is what out of several life qualities or experiences seems to lead to the condition of Parkinson's, and then various ruminations on stress, flu, etc.

I am suggesting that global economics could be a major contributing factor, that the disease is actually shaped and sustained by market forces through manipulation of the body by the prescribed treatments. I am suggesting that people like pharmaceutical companies and movement disorder specialists (many good-hearted people there definitely) nonetheless have a certain strong incentive to enlist lifelong consumers of their services and products, and that in turn has a created a cultural identity of the PD patient.

In countries where efforts to do that are not going to yield consistent profits because the patient base can't sustain that track financially, something else happens...I'm not sure what. People in some ways eat more naturally here, but in many ways it is probably more polluted, food more contaminated. Poverty and violence are hugely stressful situations. Yet in my light reading on the subject, and in my personal observation, PD is considerably rarer in poor countries than the top industrialized nations, especially YO. That cultural identity is not as prevalent.

A little OT, I find it interesting that Sinemet here is readily available without a scrip at the same time that they're talking about world-wide shortages....hmmm...

Paula, I feel your pain. I will PM you to talk more, Yes, I do know people who have recovered from PD, even all the drug-taking. Some of these - while I personally am not a Christian - feel that their Christian faith enabled them to accomplish this.
Fiona hi,
I'm trying to keep out of this thread but I'm afraid I've been sucked in!
PWP who have discontinued taking levodopa who I assume previously benefitted from it in order to have been given a formal diagnosis of PD?
Also these people who've recovered from PD, how and where are they?
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Old 01-06-2011, 05:22 AM #22
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Originally Posted by Fiona View Post
Hi Paula dear,
I am suggesting that global economics could be a major contributing factor, that the disease is actually shaped and sustained by market forces through manipulation of the body by the prescribed treatments. I am suggesting that people like pharmaceutical companies and movement disorder specialists (many good-hearted people there definitely) nonetheless have a certain strong incentive to enlist lifelong consumers of their services and products, and that in turn has a created a cultural identity of the PD patient.

In countries where efforts to do that are not going to yield consistent profits because the patient base can't sustain that track financially, something else happens...I'm not sure what. People in some ways eat more naturally here, but in many ways it is probably more polluted, food more contaminated. Poverty and violence are hugely stressful situations. Yet in my light reading on the subject, and in my personal observation, PD is considerably rarer in poor countries than the top industrialized nations, especially YO. That cultural identity is not as prevalent.

.
I totally agree with the idea that 'pharma' is driven by profit with ourselves as the 'cash cows' unhappily stuck on addictive drugs, but would query comparing national PD rates. If PD prevalence increases in an aging population then countries with lower life expectancies will have correspondingly lower PD rates ? Interesting thoughts though
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Old 01-06-2011, 08:41 PM #23
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Originally Posted by krugen68 View Post
I totally agree with the idea that 'pharma' is driven by profit with ourselves as the 'cash cows' unhappily stuck on addictive drugs, but would query comparing national PD rates. If PD prevalence increases in an aging population then countries with lower life expectancies will have correspondingly lower PD rates ? Interesting thoughts though
Ok, the US has a lower life expectancy than Sweden by maybe five years, but something like twice the rate of reported PD cases per 100,000. The country I'm living in has a life expectancy rate of about five years lower than the U.S., but 1/10 the rate of PD cases per 100,000. I see a lot more older people in this country, too - way more than in the U.S. - out and about, working in the agricultural markets, men and women in their 70's carrying huge loads of firewood on their backs jauntily up the mountainside...

I wanted to present the idea that economic realities and possibilities shape expectations, and expectations shape our bodies and what happens to them - since this thread was looking at various possible causal factors.

Recovery from levodopa therapy is another whole topic, and will have to wait for another thread...it's not what I meant to write about now...although I would rather write about faith, belief, fear, expectations, and the way those can be manipulated by ourselves and others. But another time. I know everyone here is trying really hard to figure out the answers.
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Old 01-06-2011, 11:41 PM #24
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Default Each generation must work out the answers for themselves, I suppose

But you can lose a lot of energy reinventing the wheel. In order to save some of that, I am going to unabashedly lay out some answers. That it is IMHO should go without saying because it is all opinion because nobody knows. So, here is "PD for Dummies"-

1- PD is a "junk diagnosis" assigned when your doc is either stumped, busy, or incompetent. Certain criteria leads to its selection over other such catch-alls. Tremor, for example. Slow? Stiff? You got PD baby.Unless, of course, you cure yourself later....
2- Because of the manner of diagnosis, PD has several sub-sets of patients. YOPD. SOPD. Tremor dominant. Akinetic. Fast progressing. Slow. and so on.
3- We have to paint with a broad brush to account for what we see. It will not be found that microbe "A" nor virus "B" nor toxin "C" causes PD.
4- PD is caused by inflammation, for the most part. Inflammation is caused by many secondary agents. Viruses. Microbes. Toxins. Mercury. Manganese. High fructose corn syrup. Flu shots. Stress.
5- Stress? Yes, stress causes inflammation. But inflammation also causes stress. Welcome to the world of the feedback loop. Ever been around when a musician laid a microphone too close to his PA? That ear splitting shriek started as a whisper that was amplified and fed back in again and again. That is the power of a feedback loop. Stress and inflammation do a dance that can destroy neurons.
6- The destruction comes from the unintended effects of cytokines and hormones. The first are the messengers of your immune system, especially those defenders called the microglia. They get excited and forget to calm down. This initiates the first phase of PD. The SN has one of the highest concentrations of microglia in the CNS. So the SN takes the biggest hit. Microglia become more excitable aswe age. So PD is thought of as an old man's disease. But some of us are exposed to early life encounters that prime our microglia to over react. We get Young Onset. All this starts the process.
7- Once the immune phase gets started, we are increasingly vulnerable to the endocrine phase. Stress. Chronic, everyday stress and its chemical cousins from the adrenal glands - cortisol and adrenaline. More dead neurons.
8- But the hormones and cytokines are more than toxins, they are also neuroactive. They affect the CNS as surely as dopamine. Get a urinary tract infection and ignore it? Your PD can consume you in days because of your own cytokines.

Notice how little mention there is of neurology here? Oneof the biggest hurdles we face is that PD falls on the cracks where several different disciplines meet. And they don't talk to one another.

More of this (with citations) here.
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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 01-07-2011, 08:22 AM #25
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Originally Posted by reverett123 View Post
But you can lose a lot of energy reinventing the wheel. In order to save some of that, I am going to unabashedly lay out some answers. That it is IMHO should go without saying because it is all opinion because nobody knows. So, here is "PD for Dummies"-

1- PD is a "junk diagnosis" assigned when your doc is either stumped, busy, or incompetent. Certain criteria leads to its selection over other such catch-alls. Tremor, for example. Slow? Stiff? You got PD baby.Unless, of course, you cure yourself later....
2- Because of the manner of diagnosis, PD has several sub-sets of patients. YOPD. SOPD. Tremor dominant. Akinetic. Fast progressing. Slow. and so on.
3- We have to paint with a broad brush to account for what we see. It will not be found that microbe "A" nor virus "B" nor toxin "C" causes PD.
4- PD is caused by inflammation, for the most part. Inflammation is caused by many secondary agents. Viruses. Microbes. Toxins. Mercury. Manganese. High fructose corn syrup. Flu shots. Stress.
5- Stress? Yes, stress causes inflammation. But inflammation also causes stress. Welcome to the world of the feedback loop. Ever been around when a musician laid a microphone too close to his PA? That ear splitting shriek started as a whisper that was amplified and fed back in again and again. That is the power of a feedback loop. Stress and inflammation do a dance that can destroy neurons.
6- The destruction comes from the unintended effects of cytokines and hormones. The first are the messengers of your immune system, especially those defenders called the microglia. They get excited and forget to calm down. This initiates the first phase of PD. The SN has one of the highest concentrations of microglia in the CNS. So the SN takes the biggest hit. Microglia become more excitable aswe age. So PD is thought of as an old man's disease. But some of us are exposed to early life encounters that prime our microglia to over react. We get Young Onset. All this starts the process.
7- Once the immune phase gets started, we are increasingly vulnerable to the endocrine phase. Stress. Chronic, everyday stress and its chemical cousins from the adrenal glands - cortisol and adrenaline. More dead neurons.
8- But the hormones and cytokines are more than toxins, they are also neuroactive. They affect the CNS as surely as dopamine. Get a urinary tract infection and ignore it? Your PD can consume you in days because of your own cytokines.

Notice how little mention there is of neurology here? Oneof the biggest hurdles we face is that PD falls on the cracks where several different disciplines meet. And they don't talk to one another.

More of this (with citations) here.
so pd is caused by just "living" in modern society and i assume influenced by genetics.
as far as low dose mercury, do dentists that used to use amalgam containing mercury everyday have a higher incidence of pd? i don't think so and i doubt they are secretly taking some secret supplements to counteract the mercury vapors they used to breathe preparing amalgams.
lets say neurologists agreed with you. pd still is ultimately caused by dead or malfunctioning neurons. it still occurs everywhere and very few people get it.
it's not their primary job to discover pd's etiology, that's for universities and the NIH and there are thousands of papers researching what causes it. sure it would be nice to know what may "promote pd" but if it's basically western civilization imho we can't do much to change that for our kids and better to study the genetics of those who get pd vs those that don't, find out what's different and develop drugs accordingly. and research biomarkers so pd can be detected as early as possible which would greatly help statisticians . and neuro protection, can't keep the bad guys out of our bodies - long lived pollutants - , they're even in antarctic snow but maybe nerves can be better protected.

pd could be in many cases caused by one or more events damaging/killing neurons. then, with your normal 1% loss/yr of dopamine producing neurons, pd eventually manifests itself. it could even be some of us are born with fewer neurons by chance.

and btw, what two habits have been shown to reduce your chances of getting pd? coffee drinking and smoking. no stress in people with those habits.
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Old 01-08-2011, 10:35 PM #26
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Default A reasonable hypothesis

The original observation about teachers and nurses has a simple answer if one looks from an inflammatory viewpoint. One who has a sensitized immune system will react more violently to encounters with bacteria and viruses. This violent reaction is out of proportion to the threat due to the hypervigilance of the microglia. Even separated from the site of an injury by the length of the body and the blood brain barrier, the microglia keep things at a rolling boil of damaging cytokines.

Nurses and teachers are constantly exposed to microbes that trigger the immune response of the microglia. Day in, day out throughout their working life, there is near constant stimulation of the destructive merry-go-round and it spins fastest in the SN.

It isn't that a mysterious virus creeps in and causes PD. The problem is the reaction of our microglia. A lot of things can start the ball rolling and keep it doing so. Those invaders of yore cannot defeat the host's defenders but their presence can revive the memory of old battles. That is what fuels PD and teachers and nurses inhabit a sea of those reminders. Their microglia never rest.
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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 01-09-2011, 05:04 PM #27
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The original observation about teachers and nurses has a simple answer if one looks from an inflammatory viewpoint. One who has a sensitized immune system will react more violently to encounters with bacteria and viruses. This violent reaction is out of proportion to the threat due to the hypervigilance of the microglia. Even separated from the site of an injury by the length of the body and the blood brain barrier, the microglia keep things at a rolling boil of damaging cytokines.

Nurses and teachers are constantly exposed to microbes that trigger the immune response of the microglia. Day in, day out throughout their working life, there is near constant stimulation of the destructive merry-go-round and it spins fastest in the SN.

It isn't that a mysterious virus creeps in and causes PD. The problem is the reaction of our microglia. A lot of things can start the ball rolling and keep it doing so. Those invaders of yore cannot defeat the host's defenders but their presence can revive the memory of old battles. That is what fuels PD and teachers and nurses inhabit a sea of those reminders. Their microglia never rest.
This is also close to my way of thinking. There has to be a connection to disease exposure which can come in the form of sick patients, little kids, vaccines and flu shots but more likely due to quantity of exposure rather than one time or one type.

I am well aware the number of people who have taken the poll is too small to mean anything, but i find it at least worth mentioning that the teachers and nurses have been at least 70% of the total since this poll started.
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Old 01-09-2011, 08:29 PM #28
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This is also close to my way of thinking. There has to be a connection to disease exposure which can come in the form of sick patients, little kids, vaccines and flu shots but more likely due to quantity of exposure rather than one time or one type.

I am well aware the number of people who have taken the poll is too small to mean anything, but i find it at least worth mentioning that the teachers and nurses have been at least 70% of the total since this poll started.
it is absolutely meaningless unless you know the percentage of those groups that are regular posters. if you think about it, those are two groups that are more likely to participate on message boards.
your poll is as unscientific as it gets and that's how misconceptions start. i sure hope you aren't telling teachers and nurses you know that they have an increased chance of getting parkinson's based on the comments made on this board.
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Old 01-09-2011, 10:16 PM #29
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Soccertese this is not the first time you have responded to my posts in a overly disdainful way.

Would you beleive I hesitated in typing my last post because I was worried you would blow me out of the water again? I clearly stated that I did not believe the poll could be taken seriously. You statement about me telling other nurses and teachers makes me out to be some kind of idiot!

Disagreeing with a person can be done with grace. It is easy to run me over when you do not have to look at me face to face, but I assure you I am a real person with deep feelings. I came to this forum because I was feeling very much alone and needed support and information. You are the only community of people dealing with parkinsons that I have ever met since my husband's diagnosis and I cannot figure out for the life of me why you would not welcome me and my questions and opinions.
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Old 01-09-2011, 10:16 PM #30
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Default Method over meaning

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it is absolutely meaningless unless you know the percentage of those groups that are regular posters. if you think about it, those are two groups that are more likely to participate on message boards.
your poll is as unscientific as it gets and that's how misconceptions start. i sure hope you aren't telling teachers and nurses you know that they have an increased chance of getting parkinson's based on the comments made on this board.
And yet the fact remains that the representation of the two professions seems unusually high.
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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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