cover story on Wired magazine...hitting the stands now.

http://michaeljfox.org/newsEvents_mj...cle.cfm?ID=425

Debi

At first I thought you misspelled surgery ..lol.
Now that's Andy Grove and Sergey Brin we've heard from in two days. It's very reassuring that these men are working so hard and generously contributing $$, as is Michael.

thanks,

I was just reading this, Debi. And my answer is "It isn't likely." I say this with conviction because of the very things Sergey brings up in this aticle - that environmental factors and how we treat (or take care of) our bodies has a lot - a WHOLE lot to do with us being vulnerable to diseases.

Now, for a little flex question (I hated those in college).

If this statement is true (and it is), "IF you live long enough, you will get Parkinson's," and one has the LRRK2 gene that may or may not be the cause of PD, does that mean that only those younger than "old" (whatever that is!) that have the gene mutation will get the disease?" I know that is a mouthful, but that's how twisted and confusing the stuff that Sergey is doing can be.

I must reiterate the extreme need to first try to find a test to confirm that one indeed has PD before trying to decrease one's chances of getting it. This is not to say that we shouldn't lead a lifestyle that would hold a myriad of illnesses at bay (e.g. exercise would decrease your chances of getting cardiac disease, etc.).

What Sergey Brin DOES have, however, is the capacity to gather an enormous amount of data - to include past studies - that when analyzed could reveal some astounding findings.

So, I say all of this to say "no" to your question - because if "to cure" is to eradicate the disease, and PD is a normal part of the aging process (depending on when you get it), unless he can turn back time, we will not ever eradicate the disease. "Cure" in our greatest hope is to provide good enough treatments to control the symptoms with the least side effects.

Peggy

Peggy hit it right on the head as usual. To me "cure" is a misnomer. Good as a slogan for fundraising but not descriptive of what will most like occur if we are lucky.

The way I think about it, Unlike infections and many other diseases that have been cured by medical miracles of the 20th century, PD is a long term chronic illness that is a result of combinations of environmental challenges and genetic vulnerabilities that wear on your body to varying degrees and at some point become manifest (like when 80% of your dopamine neurons are non functional) as a disease. Once you reach the downward slope its all you can do to slow the decline by doing things to strengthen your self (through diet, exercise, habits like rest ). Medicines which help symptoms may cause other harm (side effects).

In this general context "cure" can be thought of as a process of healing, which gives the patient a more active role in the process as a partner with a knowledgeable professional (the doc) to help interpret information and advise on actions and provide access to more powerful and hence potentially more dangerous treatments. This is a different model of doctor-patient relationship than the traditional Doctor as all knowing keeper of the cure.

This patient centered model of the healing process is needed to orient our selves toward better health or "growing old dis-gracefully" as my Pa-in-law, an old fashioned Doc himself, used to say.

That said, I think Peg is also correct about the value of amassing huge data bases such as Google is famous for, which will be Sergey's biggest contribution. Those of you who know me, have heard me talking about electronic medical records and inter-operable data exchange standards for many years as strategies for both knowledge and system development and both necessary to deliver the "cure". But this is a topic for another day.

Perry

I read your link and felt optimism. I have a degree in information management. I believe looking for patterns in data is a much more scientific theory than using theories (such as the use of embryos.)

Peggy, your example is incorrect. The correct truth would be, "all people die." Some die of heart problems, strokes, and cancer. Many people have lived over the age of 100 without having PD. To word it in a more meaningful sence, All people die. The average United States Citizen life span is ???. Of these ??? die of primary effects of Parkinson symptoms.

Now to break it down further, Of those who die, ??? had the LRRK2 mutation.
Of those with the LRRK2 mutation, ??? were also exposed to ???. Those who died without the mutation were exposed to more ??? (or a second ???,) than those with the mutation.

This could be a proof to solve to discover the cause of Parkinson.

Debi, please keep us posted with MJF research and his foundations openness to improving how facts are discovered and used.

debi,
i've been meaning to ask about this for some time . Are they still doing the DNA analysis at 23andMe? i finally sent in my second sample -[first one didn't contain enough DNA],and it was accepted but it was sent to me months ago to redo mine. wondering if i should remove the SPIT video from You Tube. Do you know what's happening? a poster here said they weren't doing it anymore.

of you hear anything please let me know.

thanks,

Yes...they are still providing the discounted price for PD patients interested in being part of their PD Research Community.

Debi

This article is wonderful as an example of the new, and long ignored, emphasis on the patient. If you read it with an eye for how the patient role is perceived, it’s pretty ground-breaking for the natural inclusion of patients as central to the equation, with indications of how that rankles the establishment.

Some excerpts:

The second coming of aspirin is considered one of the triumphs of contemporary medical research. But to Brin, who spoke of the drug in a talk at the Parkinson’s Institute last August, the story offers a different sort of lesson—one drawn from that period after the drug was introduced but before the link to heart disease was established. During those decades, Brin notes, surely “many millions or hundreds of millions of people who took aspirin had a variety of subsequent health benefits.” But the association with aspirin was overlooked, because nobody was watching the patients. “All that data was lost,” Brin said.
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But a problem emerges as the data in a basket become less uniform. This was the focus of much of Brin’s work at Stanford, where he published several papers on the subject. One, from 1997, argued that given the right algorithms, meaningful associations can be drawn from all sorts of unconventional baskets—”student enrollment in classes, word occurrence in text documents, users’ visits of Web pages, and many more.” It’s not a stretch to say that our experiences as patients might conceivably be the next item on the list.
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Mark Hallett, chief of the Human Motor Control section at the National Institute of Neurological Disorders and Stroke, saw Langston present his results at a recent conference and came away very impressed. “The quality of the data is probably not as good as it could be, since it’s provided by the patient,” he says. “But it’s an impressive research tool. It sounds like it’d be useful to generate new hypotheses as opposed to prove anything.”
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And I find it telling that the nexus of Brin and Grove is MJFF, where their different approaches, and financial heft, merge:

Grove disagrees somewhat with Brin’s emphasis on patterns over hypothesis. “You have to be looking for something,” he says. But the two compare notes on the disease from time to time; both are enthusiastic and active investors in the Michael J. Fox Foundation. (Grove is even known to show up on the online discussion forums.)

The notion that individuals are better equipped with more information and that our experiences not only matter but are essential to progress is a powerful message in and of itself. I like the last paragraph:

“But in some cases, undoubtedly, we may find ourselves in a circumstance like Brin’s, with an elevated risk for a disease with no cure. So we’ll exercise more, start eating differently, and do whatever else we can think of while we wait for science to catch up. In that way, Brin’s story isn’t just a billionaire’s tale. It’s everyone’s.”

It's kind of rewarding to see in print some sort of affirmation that we haven't been crazy all these years to be thinking that the science needs to catch up to what patients already know. Power to the patients – and to those in power who listen to us!

I need to provide a little more explanation for my response, which I still stand by. First, Carey, I think the article is a great promoter of listening to the patient. If scientists had done so over the last 40+ years since levodopa was discovered to help control PD symptoms, we might be onto something.

Vicki -(or Vicky) I did not mean to sound so sinister and definitely did not mean there is no hope ever for a cure for PD. I was addressing those of us who have had this disease for 10+ years. . The suggestion that through Sergey's work we might be able to escape PD are wishful thinking, in my opinion. And your 100-yr-old man probably did have Parkinson's; he was just asymptomatic. In other words the aging process went on in his brain like all of us, but he had some reason that his 75% neuron loss didn't make his symptoms revealed.

I have to go with Andy Grove on this one. We DO have to have something we're looking for - and like I said, a way to positively identify that one has PD is a good start. There is too much variation in PD patients foro it not to be a collection of neurological illnesses. And although Sergey's information collected might show patterns and whatnot, I don't think his way will be the route to the cure.

Let's be realistic about those of us with "seasoned" Parkinson's. The way the FDA is working now and the way "cures" are being marketed and commercialized by big pharma today, those of us with advanced PD (10+ years) cannot expect a cure soon. But I commend those who will die trying - it may be better for future generations.

I take your 10+ and raise it to 20+.