Parkinson's Disease Tulip


advertisement
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

Reply
 
Thread Tools Display Modes
Old 01-04-2011, 09:14 AM #11
YogaLife's Avatar
YogaLife YogaLife is offline
Junior Member
 
Join Date: Dec 2010
Location: Dallas
Posts: 25
10 yr Member
YogaLife YogaLife is offline
Junior Member
YogaLife's Avatar
 
Join Date: Dec 2010
Location: Dallas
Posts: 25
10 yr Member
Default

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.
YogaLife is offline   Reply With QuoteReply With Quote

advertisement
Old 01-04-2011, 09:33 AM #12
soccertese soccertese is offline
Magnate
 
Join Date: Nov 2007
Posts: 2,531
15 yr Member
soccertese soccertese is offline
Magnate
 
Join Date: Nov 2007
Posts: 2,531
15 yr Member
Default

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.
soccertese is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
made it up (01-05-2011)
Old 01-04-2011, 05:07 PM #13
YogaLife's Avatar
YogaLife YogaLife is offline
Junior Member
 
Join Date: Dec 2010
Location: Dallas
Posts: 25
10 yr Member
YogaLife YogaLife is offline
Junior Member
YogaLife's Avatar
 
Join Date: Dec 2010
Location: Dallas
Posts: 25
10 yr Member
Default

Quote:
Originally Posted by soccertese View Post
you posted a hoax video which was intended to scare people from getting flu vaccines.
Wrong again. I am in nursing school and obviously get flu shots. I give my sons flu shots. The video, which I can't find evidence to be a hoax but if it is obviously was not done knowingly on my part, was posted for the reason I stated above. It seemed relevant to the topic (flu shots affecting the chance of getting PD).

No need to be so touchy. I come here in peace
YogaLife is offline   Reply With QuoteReply With Quote
Old 01-05-2011, 07:15 AM #14
Conductor71's Avatar
Conductor71 Conductor71 is offline
Senior Member
 
Join Date: Jul 2009
Location: Michigan
Posts: 1,474
10 yr Member
Conductor71 Conductor71 is offline
Senior Member
Conductor71's Avatar
 
Join Date: Jul 2009
Location: Michigan
Posts: 1,474
10 yr Member
Default Encephalitis and reaction to it

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
Conductor71 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
anon72219 (01-05-2011), moondaughter (01-05-2011)
Old 01-05-2011, 09:28 AM #15
soccertese soccertese is offline
Magnate
 
Join Date: Nov 2007
Posts: 2,531
15 yr Member
soccertese soccertese is offline
Magnate
 
Join Date: Nov 2007
Posts: 2,531
15 yr Member
Default biogen

"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.
soccertese is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Conductor71 (01-05-2011)
Old 01-05-2011, 10:02 AM #16
jeanb's Avatar
jeanb jeanb is offline
Senior Member
 
Join Date: Aug 2006
Location: sonoran desert
Posts: 1,352
15 yr Member
jeanb jeanb is offline
Senior Member
jeanb's Avatar
 
Join Date: Aug 2006
Location: sonoran desert
Posts: 1,352
15 yr Member
Lightbulb caretakers & ALZ

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

Quote:
Originally Posted by soccertese View Post
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.
__________________
Jean B

This isn't the life I wished for, but it is the life I have. So I'm doing my best.
jeanb is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
soccertese (01-05-2011)
Old 01-05-2011, 10:17 AM #17
Conductor71's Avatar
Conductor71 Conductor71 is offline
Senior Member
 
Join Date: Jul 2009
Location: Michigan
Posts: 1,474
10 yr Member
Conductor71 Conductor71 is offline
Senior Member
Conductor71's Avatar
 
Join Date: Jul 2009
Location: Michigan
Posts: 1,474
10 yr Member
Default Flu isn't direct cause

Quote:
Originally Posted by soccertese View Post
"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.
Soccertese,

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
Conductor71 is offline   Reply With QuoteReply With Quote
Old 01-05-2011, 02:54 PM #18
Fiona Fiona is offline
Member
 
Join Date: Oct 2006
Posts: 492
15 yr Member
Fiona Fiona is offline
Member
 
Join Date: Oct 2006
Posts: 492
15 yr Member
Default

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.
Fiona is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
anon72219 (01-05-2011), imark3000 (01-11-2011), shcg (01-06-2011)
Old 01-05-2011, 03:15 PM #19
paula_w paula_w is offline
In Remembrance
 
Join Date: Aug 2006
Location: Florida
Posts: 3,904
15 yr Member
paula_w paula_w is offline
In Remembrance
 
Join Date: Aug 2006
Location: Florida
Posts: 3,904
15 yr Member
Default

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
__________________
paula

"Time is not neutral for those who have pd or for those who will get it."
paula_w is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
soccertese (01-05-2011)
Old 01-05-2011, 10:44 PM #20
Fiona Fiona is offline
Member
 
Join Date: Oct 2006
Posts: 492
15 yr Member
Fiona Fiona is offline
Member
 
Join Date: Oct 2006
Posts: 492
15 yr Member
Default

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 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
imark3000 (01-11-2011), krugen68 (01-06-2011), paula_w (01-06-2011), shcg (01-06-2011)
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
New Survey Highlights People with Parkinson's and Caregivers' Needs (Topix) NewsBot Parkinson's Disease 0 10-13-2008 01:40 PM
UK: People think I'm drunk ... but my Parkinson's symptoms are better if I have a dri Stitcher Parkinson's Disease 3 02-17-2008 03:32 PM
Famous people with Parkinson's Disease Leilarnia Parkinson's Disease 6 10-01-2006 11:22 PM


All times are GMT -5. The time now is 09:45 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.