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Parkinson's Disease |
View Poll Results: For people with PD. What is/was your line of work? | ||||||
I am/was a healthcare worker | 9 | 23.68% | ||||
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I am/was a teacher | 13 | 34.21% | ||||
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I am/was neither a teacher or a healthcare worker | 16 | 42.11% | ||||
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Voters: 38. You may not vote on this poll |
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01-04-2011, 09:14 AM | #11 | |||
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Junior Member
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soccertese- I was not using a youtube video to cite scientific evidence of anything. I just came across it and found it relevant to the discussion. The bottom line is that no one knows what causes PD, and its important to keep an open mind as to possible causes.
Thank you for sharing your article I am always interested in things like this. As for "Awakenings" I read Oliver Sacks book and though no one knows what caused the breakout of encephalits lethargica, it has been theorized that the flu pandemic going on at the same time had a strong correlation to getting the disease. This, however, it an unproven theory. Laura- thanks I've been on message boards before and I know sometimes they can touch a nerve... This is a such an emotional issue for us all honestly I understand. The MMT idea makes a lot of sense, and I agree that viral infection causing PD also has a lot of evidence behind it. It is clear to me that more than one thing causes PD or we wouldn't have sucha hard time isolating the cause. |
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01-04-2011, 09:33 AM | #12 | ||
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Magnate
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emotion has nothing to do with my postings. i'm just doing simple fact checking as i do with any post. you posted a hoax video which was intended to scare people from getting flu vaccines. this is not just an attempt at a harmless discussion to educate yourself anymore imho.
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"Thanks for this!" says: | made it up (01-05-2011) |
01-04-2011, 05:07 PM | #13 | |||
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Junior Member
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Quote:
No need to be so touchy. I come here in peace |
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01-05-2011, 07:15 AM | #14 | |||
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Senior Member
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What interests me is the vast pool of anecdotal evidence that goes ignored. Why is this? I didn't get the vaccine stats you mentioned, but what struck me is again we have encephalitis playing a role. I'm not sure if you are aware of a growing number of children who come down with a virus end up experiencing PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Strep). Well, the name is a little misleading...it fails to capture that children also experience movement disorder symptoms, especially chorea, though if you search the case studies, you'll find older kids experience Parkinsonism. The viruses include strep and epstein-barr (causes mono); as a nurse, you know that strep is nearly ubiquitous.
If we look to vaccine reactions, one of the most common more serious side effects is encephalitis. The vaccine triggers an auto-immune response that is supposed to help us develop anti-bodies and thus become immune to the disease when exposed again. Only no one wants to admit that still in the 21st century trying to prevent disease can in fact cause the disease itself. Of all we know in medicine and in treating people, we still can't get rid of iatrogenesis. The CDC has too much to lose in admitting this, though essentially they have with the existence of Hannah Poling compensation. Essentially, disease may be the end result if the right environment is provided through genetics, so the vaccine can e harmful for some people. If that is true for vaccines, then why is it overlooked as a possible trigger for PD? If you examine the anecdotal evidence that PD is for some of us, mainly an auto immune reaction, that due to genetic factors impact the brain's ability to manage a direct viral assault, in other words, those with PD can't shut off the immune response and it turns pathological. What alarms me is that not only can this be replicated in animal models; we have living proof in humans...the encephalitis lethargica you mention still occurs and in a recent case study, twenty people came down with it again...after a strep infection. Of those cases, 95% experienced Parkinsonian symptoms; some patients reversed back to normal, some remained static with symptoms, and others went into an irreversible disease state. As many as 60% of all studied showed hyperactive cellular actlvity in the substantia nigra. Not sure if I misattributed percentages...here is a link to full text article http://brain.oxfordjournals.org/content/127/1/21.full There are also studies linking PD to Lyme Disease, the gut bacteria H. pyllori, and Toxoplasmosis; again, I am betting there is an encephalitic phase here too. The evidence to me, though anecdotal, that PD is by and large a pathalogical outcome to an auto immune reaction centered on our dopaminergic cells. Teams of French researchers have been providing evidence of immune part to PD for at least ten years. Last year researchers led by Howard Gendelman at University of Nebraska announced development of a PD vaccine. Not surprisingly, Europe is ahead of the game here, the Austrian pharma Affiris is starting clinical trials this year! A few days ago, I learned that Biogen bought rights for $427 million to develop immunotherapy to treat PD. That's a lot of money to spend for something highly speculative, so it would seem that maybe there is an auto immune role after all. What I find shocking is that common sense would not have mandated a test to prove or disprove auto immune role years ago. It is obvious that if this immune angle proves valid, that something is seriously flawed with our research model and a system that profits off of keeping us sick. I know this is oversimplified, but it is the only thing that makes any sense in every way (biochemically, clinically, etiologically, etc.). If there are multiple ways to PD, the best we can hope for in way of a cure is to stop the process before we see motor symptoms which is the goal of Gendelman et al. This is also why MJFF is so hot on the trail of biomarkers to catch it really early on. I am hopeful that a vaccine along with neurotrophic treatments with GDNF will at least revolutionize treatment for PD and vastly improve prognoses. Laura |
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"Thanks for this!" says: | anon72219 (01-05-2011), moondaughter (01-05-2011) |
01-05-2011, 09:28 AM | #15 | ||
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Magnate
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"The subsidiary of Neurimmune brings to Biogen Idec (Nasdaq: BIIB) global rights to three pre-clinical immunotherapy programs focused on the discovery and development of novel human antibodies that address three central nervous system (CNS) targets: alpha-synuclein, tau and TDP-43. Those drug targets may play a role in the treatment and prevention of a wide variety of neurodegenerative diseases, including Parkinson’s disease, Alzheimer’s disease and amyotrophic lateral sclerosis (ALS). "
seems to me they are developing antibodies to certain proteins that may accumulate and possibly cause those diseases. not sure where the flu comes into play here. the initial payment was $35mill. sorry to nitpick, i respect your thinking outside the box and your efforts. listened to local NPR program yesterday on alzheimers, it could bankrupt the country. and what a description of what the caregivers go thru, they often die before the patient. the thing i'd concentrate on is there pd clusters? if flu was a major cause wouldn't you expect clusters in families, especially twins? i think if there was we'd know about it and would have known about it years ago. |
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"Thanks for this!" says: | Conductor71 (01-05-2011) |
01-05-2011, 10:02 AM | #16 | |||
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Senior Member
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I agree with you about Alzheimers:
At age 80 my mother told me she wanted to die - to get away from the burden of caring for my Dad who had ALZ. My mother was burnt out and turned Dad's care over to me. I quickly found a memory care facility near my home for my dad. For the last year of his life I was his caretaker - and even though he didn't live with me, the stress was at times overwhelming. Sometimes on my trike rides I'd just pull over to the curb and sob. Jean B
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Jean B This isn't the life I wished for, but it is the life I have. So I'm doing my best. |
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"Thanks for this!" says: | soccertese (01-05-2011) |
01-05-2011, 10:17 AM | #17 | |||
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Senior Member
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Quote:
Thanks for the financial breakdown. I just get wowed by big numbers! I don't think the flu causes it. Viral and bacterial infections, physical brain trauma, vaccine reactions, neurotoxins (not sure if this fits); these all tend to leave one with some sort of encephalitis. My theory is there is something between the encephalitis and auto immune response to it that causes the turn to a pathological disease state. This can be in the form of someone who has genetic mitochondrial dysfunction or alpha-synuclein dysfunction. The genetic factor is so individualistic I don't think they are ever going to find "one cause". I also know that it is not just one event like inflammation linked to brain injury; but we take multiple hits with each of us having different tipping points. I know it is more complex, I just think at its base, it is auto immune. The researchers at U Nebraska acknowledge this. Further, encephalitis followed by Parkinsonian movement symptoms features in long non-treated Thyroiditis and Pituitary dysfunction with auto immune origin...there are just too many instances of it surfacing as a secondary thing for it not to be related some how to a malfunctioning immune response, but this is just a common sense, unscientific look at things. Let's not forget there is most likely a blood brain barrier issue at play. So who is to say, in the case of twins, that one ends up with a damaged BBB along the way while the other does not? This may actually prevent it or who knows maybe one twin smokes? Silly, I know,but there are so many variables it is hard for me to see twins as a big exception. Many things unanswered and yes, you think they would know by now if it auto immune, I think that is just the tip of the iceberg and that it largely involves our endocrine systems and stress response. As an amateur "disease hunter", I throw in the towel at that point Thanks for at least entertaining my theories! Laura |
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01-05-2011, 02:54 PM | #18 | ||
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Member
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Ok, here we go. Completely unsubstantiated theory, didn't do my research, quite emotionally driven...
I'm living down here in South America right now, in a country with a medical system rated higher than the U.S. in terms of quality and access.Lots of possible stress - country is in civil war. BUT far fewer people with PD down here. IMHO, why? They don't have the money for the pills, certainly not in terms of the global exchange rate.... So what happens? The Pharms don't have any interest in developing their trajectories as Parkinson's patients, the medical system can't create an identity of movement disorder specialists with reputations to build and protect around people that can't afford the lifelong treatments. So initial symptoms are called something else, people don't get the idea in their head that they have this incurable thing, they get over whatever they have, and it just is not a common phenomenon within their culture. Oh, and you can buy Sinemet here without a prescription. Lots of holes to shoot here. Go to it. But I bet I'm right. |
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01-05-2011, 03:15 PM | #19 | ||
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In Remembrance
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Fiona,
I want to believe that with everything i've got. But are you actually saying you know people who have recovered from Parkinsons? How many? What is the difference between them and us? No pharma? No processed foods? No pollution? I know I'm a drug addict. We are all drug addicts. But it started with the stiffening of my body, lack of arm swing, etc. One side only. And it's how so many start. I didn't go on sinemet for 6yrs post dx and for probably at least 10 yrs from motor symptoms onset total. I went on it finally because i was miserable. it is definitely a progressive thing before drugs are ever taken. i am open to what you are saying and have eliminated many drugs. but i'm addicted to what i am taking. and can't move if I don't. i don't like the greed here but i would be very sick if we had a civil war. We have toxin that they don't. Do they eat more naturally? My first neuro asked "do you think it's all in your head?' i said no. he asked" do yu want it to be all in your head' i said yes and he said, 'then it isn't." Can you tell us more specifics about the people who recover? tell us more. be well, paula
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paula "Time is not neutral for those who have pd or for those who will get it." |
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"Thanks for this!" says: | soccertese (01-05-2011) |
01-05-2011, 10:44 PM | #20 | ||
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Member
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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. |
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