WINTER WONDERLAND or A WEEKEND TO WONDER

I WONDER IF THIS IS NOT ENOUGH SNOW YET?

I WONDER IF MY NEW PHYSICAL THERAPY REGIMEN WILL IMPROVE MY POSTURE AND P.D. SYMPTOMS?

I WONDER IF WE WILL GET GOOD NEWS ON MY WIFE'S ULTRA SOUND GUIDED CORE TISSUE SAMPLES ?

I WONDER WHEN THE WALL STREET/BANKING CHICANERY WILL REALLY COME TO AN END?

I WONDER WHAT CHANGE HAS TAKEN PLACE ?

I WONDER WHY I WONDER ?

I WONDER IF I AM THE LUCKY ONE ?

PD IS NOT CANCER AND THAT I DON'T WONDER ABOUT.

PLM

I HOPE YOU WERE ABLE TO CATCH THE CBS NEWS ON DECEMBER 5TH @ 6:30PM.
IF NOT:
READ THE ARTICLE.http://www.businessweek.com/print/magazine/con. . The two-year-old venture has already signed up 23,000 participantsIN DEPTH December 4, 2008, 5:00PM EST
Health 2.0: Patients as Partners
Social networks like PatientsLikeMe let people take charge of their own care--changing the
nature of drug research and the practice of medicine
By Catherine Arnst
CBS-BusinessWeek Collaboration
The CBS Evening News with Katie Couric has investigated how patients can find reliable medical advice online
and looked at the emergence of medical social networks, in a series called Second Opinion: Medicine Online.
You can view these reports at cbsnews.com.
Medicine has always been a top-down affair. Doctors, drug companies, regulators, and researchers are the
expert gate-keepers, telling patients what they need to know. Even their own medical records are locked away to
protect their privacy. So what would happen if critically ill patients joined together, obtained their personal
information, and made it public?
Just such a real-world experiment is under way at a Web-based social network started by the company
PatientsLikeMe. The two-year-old venture has already signed up 23,000 participants in five chronic-illness
categories—amyotrophic lateral sclerosis (ALS), Parkinson's disease, HIV/AIDS, multiple sclerosis, and mood
disorders.
On the company's Web site, PatientsLikeMe members are charting their medical histories in minute detail,
sharing their most private information with one another and the world at large, often with photos and real names
attached. To make money, the company aggregates these records, stripped of identifiers, and sells the
information to drug, device, and insurance companies, all with the consent of its patient-members. The buyers
can mine a rich vein of data on a variety of chronic illnesses that is simply not available anywhere else. In return,
patients get the hope that they are furthering progress toward cures.
This new patients-as-partners model is often called Health 2.0. PatientsLikeMe and a proliferation of similar
startups are building a new business predicated on the belief that the wisdom of crowds of patients will bring
insights, solace, and most of all, power.
Power because, as it turns out, patients talking among themselves on a global scale with complete transparency
produces all kinds of unexpected results. Drug side effects can be reported to regulators by the patients
experiencing them, without waiting for the manufacturers to come forward. Pharmaceutical companies can use
social networks to recruit subjects quickly for clinical trials, speeding up the pace of research. For that matter,
patients can simply band together and run their own clinical trials, leaving drug companies and physicians out of
the loop.
NO TIME TO LOSE
In a development that has caught the worried attention of the medical Establishment, some 250 members of
Health 2.0: Patients as Partners - BusinessWeek http://www.businessweek.com/print/magazine/con...
1 of 4 12/8/08 6:07 AM
Patients- LikeMe with ALS are testing lithium, a generic drug used to treat mood disorders, with no corporate or
academic imprimatur. The patient-run trial was instigated by Humberto Macedo, a 42-year-old systems analyst in
Brasilia City, Brazil, diagnosed in March 2007 with ALS, an incurable neurodegenerative disease.
Macedo was confined to a wheelchair, barely able to speak, soon after he was diagnosed. He could still use a
computer, though, and he quickly joined the ALS group on PatientsLikeMe. Researching his condition on the
Internet, Macedo discovered a report on a small Italian study in which lithium appeared to slow progression of
ALS. No company would be willing to finance a confirming trial of a drug that went off patent decades ago,
against a disease that strikes only 4 to 8 people per 100,000. So Macedo stepped up, proposing to fellow
PatientsLikeMe members that they test it themselves.
In December 2007 he posted a spreadsheet for recording symptoms and vital signs; ALS patients started taking
lithium daily and documenting their results. The number of participants in the test quickly reached 250, more
than five times as many as in the Italian study. Few doctors are willing to accept the results, nor would any
medical journal publish them, since the trial does not meet rigorous scientific standards. "But we can't count on
medical experts to get interested in ALS, and we don't have any time to lose," Macedo says via e-mail. "At least
we have tried something to help ourselves."
In any event, it looks as though lithium does not slow ALS, and Macedo says he is all right with that. He and his
cohort would have always wondered about its efficacy if they hadn't tested the drug. Even the prestigious journal
Nature Biotechnology, though skeptical about the value of the user-generated trial, treated the experiment
respectfully in an October editorial: "For patients with limited life expectancy, the ability to participate in a very
rough, low-level clinical study on a new treatment is far more appealing and timely than waiting for clinical data
to be published in peer reviewed literature."
The desire, and ability, of patients to participate in their own care isn't new. A January 2008 survey by market
researcher iCrossing found that 59% of U.S. adults search the Internet for health information. More surprisingly,
the study showed that 34% of the searchers visited emerging social media such as patient blogs, message
boards, and forums.
For the chronically ill, social networks mean not having to wait idly in between doctor's appointments. Patients
can reach out daily to fellow sufferers to find out what treatments work, or don't, what symptoms to worry about,
what actions to take. "The health-care system has traditionally delivered care for acute events only," says
Matthew Holt, an independent health-care consultant who organizes an annual Health 2.0 conference. "But
illness is lived in long, ongoing periods."
Critics worry that bad information will flourish in such forums, even though participants insist they won't fall for
quackery. "There is enough information that I can always check out any medicine if someone says it works,"
says PatientsLikeMe member Leonata Good, a 62-year-old Texan with Parkinson's. Holt acknowledges the
dangers, but he also points out that bad information is rife in brick-and-mortar medical settings. In any case "the
cat's out of the bag," he says. "This is happening, and the world has to deal with it."
Some of the first patient networks emerged from the nonprofit world, but the newest are commercial, and venture
capitalists are willing to finance them. There's sure to be some consolidation, but right now patients have a big
buffet to choose from. The options range from networks that encompass scores of diseases, like Trusera,
launched in July, to one-disease wonders such as SugarStats, a year-old resource for diabetics.
Health 2.0: Patients as Partners - BusinessWeek http://www.businessweek.com/print/magazine/con...
2 of 4 12/8/08 6:07 AM
PatientsLikeMe saw the business possibilities of Health 2.0 early on, in part because the company's founders,
brothers James (Jamie) and Ben Heywood, are acutely sensitive to the shortcomings of the current medical
system. Their middle brother, Stephen, was diagnosed with ALS in 1998 at age 29.
Jamie, the elder of the three and a computer scientist, quit his job the next year and started the nonprofit ALS
Therapy Development Institute in hopes of finding a cure. Progress was achingly slow, however, and by 2004 he
decided that a commercial venture would be able to scale up much faster.
He recruited his brother Ben and a mutual friend, Jeff Cole, all engineering graduates of the Massachusetts
Institute of Technology. The three went to work creating a forum that would allow legions of patients in the ALS
community to investigate new treatments together, using matching software loosely modeled after online dating
sites.
The idea wasn't the easiest sell, says Ben, now president, but the three managed to get $750,000 in combined
seed money from CommerceNet, an e-commerce incubator, and from eBay (EBAY) founder Pierre M. Omidyar's
investment group. In February 2007 the company raised $5 million more from venture capital firms.
The network launched in March 2006, supporting just one disease, ALS. Stephen Heywood was its charter
member, but he died that November when his ventilator accidentally disconnected. "I think if [PatientsLikeMe]
had been around earlier, it wouldn't have happened," says Jamie, the chairman, because other patients would
have put Stephen on guard against this not-uncommon danger.
Membership is now growing by 35% a month, and Jamie expects the total to hit one million by 2012. At that
point, he predicts, the network will encompass 200 different diseases. "We already have 5% of all ALS patients
in the U.S. on our site," he says. That's a larger data set on the disease than exists anywhere else.
The site gets patients to participate by offering them free tools for tracking their medications, symptoms, and
health outcomes, and storing the data in easy-to-read charts. A sophisticated search engine allows members to
find others whose medical profiles most closely match their own, making note-sharing that much easier.
Several pharmaceutical companies, universities, and research labs have purchased data from PatientsLikeMe,
and the founders believe the business will turn a profit in the next 12 to 24 months. Drug companies are also
paying fees to recruit participants for clinical trials. Novartis (NVS) was one of the first to sign on, in May 2008, in
order to speed up the start of a 1,200-patient study of a new medicine for multiple sclerosis. "We were in a real
crunch in terms of finding eligible patients," says Trevor Mundel, head of development for Novartis. "We saw an
immediate uptick in interest once we partnered with them," accelerating the trial by a few months.
PRIVACY ISSUES
All these deals are part of the Heywoods' overarching mission, to speed research by encouraging collaboration
between patients and researchers. Such partnerships are usually difficult to pull off because of the Health
Insurance Portability & Accountability Act of 1996 (HIPAA), which strictly limits the flow of patient records to
insurers, employers, and other third parties. But HIPAA doesn't muzzle the patients themselves. And that opens
up a regulatory escape clause.
The PatientsLikeMe Web site explains to members as soon as they sign on that aggregated information will be
sold commercially, and that personal records are visible to others—including, inevitably, staff of drug and
insurance companies. The fact that so many patients agree to these terms stuns health-care experts. "I am
Health 2.0: Patients as Partners - BusinessWeek http://www.businessweek.com/print/magazine/con...
3 of 4 12/8/08 6:07 AM
constantly amazed at what patients will put out there," says Jennifer Texada, director for new media at M.D.
Anderson Cancer Center in Houston.
And no matter how often participants say they don't care who knows of their illnesses, there is always the risk
that patients will be harmed when personal information is exposed. "Discrimination in health care, housing, and
employment is a fact of life. The consequences of disclosure can be very serious," warns Susan M. Dooha,
executive director for the Center for Independence of the Disabled in New York.
Many patients find all this talk of consequences and concerns immaterial and patronizing. "I welcome
partnerships with pharma," says PatientsLikeMe member Ryan Rollinson, a 22-year-old Minneapolis resident
who is HIV positive. "That's how we can speed up progress." Steven Saling, a 40-year-old ALS patient in Boston,
describes a sense of liberation through PatientsLikeMe. "Current HIPAA regulations, while well intentioned, keep
researchers from connecting the dots to understand what causes ALS," he says.
The privacy issue could become more fraught as medical networks grow. "It only takes one patient with a bad
experience to change the culture," says Texada. Yet even when privacy violations occur, as they surely will,
patients who have embraced Health 2.0 are unlikely to give up their freedom to network. As Novartis' Mundel
acknowledges, "Patients will keep pressuring all of us in the direction of more openness."
Arnst is a senior writer for BusinessWeek based in New York.
Copyright 2000-2008 by The McGraw-Hill Companies Inc. All rights reserved.
BUSINESS EXCHANGE: READ, SAVE, AND ADD CONTENT ON BW'S NEW WEB 2.0 TOPIC
NETWORK
The Implications of Patient Power
Health economist Jane Sarasohn-Kahn's sweeping April 2008 survey of medical social networks for the
California HealthCare Foundation spotlights many ramifications, including the emergence of new rating
systems for doctors and hospitals. For example, a startup called Vitals combines consumer and peer reviews
with empirical data.
To read Sarasohn-Kahn's report, go to http://bx.businessweek.com/health-20/reference/
Health 2.0: Patients as Partners - BusinessWeek http://www.businessweek.com/print/magazine/con...
4 of 4 12/8/08 6:07 AM

HOPE ON THE HORIZON-----TREMORS BLOG

JUST CAME ACROSS THE FOLLOWING. WE HOPE THAT PROGRESS IS BEING MADE. I WILL REPORT ON THIS IN THE NEXT WEEK OR TWO.
TREATING ADVANCED PARKINSON'S: NEW RESEARCH POINTS TO SEROTONIN.
ScienceDaily (Feb. 6, 2008) — For most people with Parkinson's disease, the only relief from the tremors, rigidity and impaired movement associated with the progressive loss of their motor skills is a drug called L-DOPA. But as the disease progresses, L-DOPA can cause prominent side effects that counteract its effectiveness.

Now, Rockefeller University's Paul Greengard and colleagues in Sweden provide evidence that serotonin, a well-studied neurotransmitter involved in regulating mood, appetite, sexuality and sleep, also plays a crucial role in Parkinson's disease. Using a mouse model of the disease, Greengard's team shows that side effects associated with repeated L-DOPA treatment can be blocked by manipulating a specific serotonin receptor. The finding, reported recently in Proceedings of the National Academy of Sciences Early Edition online, points to a new target for developing treatments for this disorder, which is the second most common neurodegenerative disease after Alzheimer's.
"Our study provides a scientific rationale for developing drugs that act on the serotonin 1B receptor for the treatment of advanced Parkinsonism," says senior co-author Per Svenningsson, a visiting professor in Greengard's lab and a group leader at the Karolinska Institute in Sweden.
The neurotransmitter dopamine has several functions in the brain, including the regulation of movement. Parkinson's disease is characterized by a progressive degeneration of dopamine-producing neurons, which causes tremors, rigidity and lack of movement control. These neurons project from the midbrain to an area of the brain called the corpus striatum. Although dopamine signaling is impaired in Parkinson's patients, serotonin production remains strong. In addition, several serotonin receptors are highly expressed in the striatum and available to modify the action of L-DOPA.
Two years ago, Greengard and Svenningsson identified a protein, called p11, that acts as a regulator of serotonin signaling in the brain. The researchers showed that p11 increases the concentration of the serotonin 1B receptor at synapses, thereby increasing the efficiency of serotonin signaling, and linked this interaction to an individual's susceptibility to depression and his or her response to antidepressant treatments.
In the new study, Greengard, Svenningsson and their colleagues show that p11 and serotonin also play a role in the L-DOPA-induced symptoms of advanced Parkinson's disease. Svenningsson and Xiaoqun Zhang, a graduate student at Karolinska, used a mouse model of Parkinson's disease in which a substance called 6-OHDA causes the destruction of dopamine neurons in one hemisphere of the brain. L-DOPA, because it is a dopamine replacement and a stimulant, causes the 6-OHDA-treated mice to rotate their bodies in the opposite direction of the dopamine-depleted brain hemisphere.
When the researchers gave these mice L-DOPA, they found increased levels of the serotonin 1B receptor and the protein p11 in the striatum. The researchers then used a molecule called CP94253, which binds to the serotonin 1B receptor and mimics the action of serotonin. CP94253 was given to two sets of 6-OHDA-treated mice: one in which p11 was "knocked out" and another with p11 intact.
After treatment with CP94253, rotational behavior and involuntary movements decreased in the p11-intact 6-OHDA-treated mice, but not in the p11 knockout mice -- suggesting that CP94253 works through p11. The researchers believe that CP94253, and similar serotonin 1B receptor agonists, may counteract L-DOPA-induced behaviors by reducing the release of GABA, a chemical messenger that inhibits the transmission of nerve impulses. GABA is released from neurons that contain the dopamine D1 receptor.
"Blocking the dopamine D1 receptor is not a treatment option for L-DOPA-induced side effects, since it would diminish the therapeutic efficiency of L-DOPA," says Greengard, who is Vincent Astor Professor and head of the Laboratory of Molecular and Cellular Neuroscience at Rockefeller. "Developing compounds that target the serotonin 1B receptor may offer an alternative approach for treating advanced Parkinson's disease."
Proceedings of the National Academy of Sciences online: February 6, 2008. http://www.pnas.org/cgi/content/abstract/105/6/2163
This study was supported in part by the National Institutes of Health, the Picower Foundation, the Peter Jay Sharp Foundation and the Simons Foundation.

MILES OF SMILES

Wit and humor are necessary components of our lives. Some of us have more and some less (and some not at all). Living with Parkinson's gives you more action per mile than most anyone else. Therefore you get more miles per smile.
Well we learned early on that previous (before PD or BPD)many daily activities were uninteresting and mundane. Now with our newly acquired movements there are the most interesting results in everything you do.
Before my condition became public knowledge there were many times that friends and colleagues would ask for a hand. We helped and my Linda ca linda would look at me and we would both have to smile and say, "Boy, were they asking the right person."
Needles to say we have had miles of smiles.

THE GREAT SHAKE-UP

THE BEGINNING OF THIS JOURNEY WAS A COLD AND WINTRY DAY IN JANUARY,2000.
AFTER months (or years) of people asking my wife, "how is Howard??" type questions, and there was a variety of them. We decided to talk to our G.P..Now that we opened up a discussion, the obvious next step was to visit the nice scanning lab at the hospital. That done, we were referred to a neurologist.
We didn't want to be there.
We didn't like him.
We certainly did not like to hear him say, after only a few minutes, YOU HAVE PARKINSON'S DISEASE".
WELL, that was enough to finish a stormy day. We didn't think he knew what he was talking about.
TO BE CONTINUED.
THAT REALLY WAS A GREAT SHAKE-UP.