PARKINSON'S DISEASE BLOGGER---TREMORS

2012-01-01T06:13:00.001-08:00

2012

for PWP

My hope is that this is the year of
PROGRESS---OR THE LACK THEREOF.

Progress towards the elusive cure.
Progress for improved treatments and care.

Lack of progress for all who travel this journey with PD.

SCRABBLE37

swallowing help

2010-11-27T05:35:00.000-08:00

STEM CELL RESEARCH @ SCRIPPS/ ON THE CUTTING EDGE

2010-09-10T01:52:00.000-07:00

FROM A RECENT SCRIPPS NEWSLETTER:
Dear Howard,

We are at the cusp of a truly historic innovation in stem cell research.
Last year, Scripps Research rising star Kristin Baldwin made headlines when her lab successfully created live mice from mouse skin cells. If Dr. Baldwin's cell reprogramming techniques can be replicated in humans, scientists believe they will be able to grow replacement organs such as hearts and livers, or develop healthy replacement cells to treat damage done by Alzheimer's or Parkinson's Disease.

Not only is this a major scientific breakthrough, but Dr. Baldwin's method of reprogramming cells circumvents the political and moral issues of stem cell research because it does not use embryonic stem cells. And, since the cells would be derived directly from the patient, the rejection problems that plague conventional transplant therapies would be eliminated.

Dancing Merengue Dog

2010-09-05T17:10:00.000-07:00

Paul Greengard does it again and again and again.

2010-09-01T15:07:00.000-07:00

This article appears in the New York Times of September 2, 2010.

September 1, 2010

Finding Suggests New Aim for Alzheimer’s Drugs

By GINA KOLATA

In a year when news about Alzheimer’s disease seems to whipsaw between encouraging and disheartening, a new discovery by an 84-year-old scientist has illuminated a new direction.
The scientist, Paul Greengard, who was awarded a Nobel Prize in 2000 for his work on signaling in brain cells, still works in his Rockefeller University lab in New York City seven days a week, walking there from his apartment two blocks away, taking his aging Bernese mountain dog, Alpha.
He got interested in Alzheimer’s about 25 years ago when his wife’s father developed it, and his research is now supported by a philanthropic foundation that was started solely to allow him to study the disease.
It was mostly these funds and federal government grants that allowed him to find a new protein that is needed to make beta amyloid, which makes up the telltale plaque that builds up in the brains of people with Alzheimer’s.
The finding, to be published Thursday in the journal Nature, reveals a new potential drug target that, according to the prevailing hypothesis of the genesis of Alzheimer’s, could slow or halt the devastating effects of this now untreatable disease.
The work involves laboratory experiments and studies with mice — it is far from ready for the doctor’s office. But researchers, still reeling from the announcement two weeks ago by Eli Lilly that its experimental drug turned out to make Alzheimer’s worse, not better, were encouraged.
“This really is a new approach,” said Dr. Paul Aisen, of the University of California, San Diego. “The work is very strong and it is very convincing.” Dr. Aisen directs a program financed by the National Institute on Aging to conduct clinical trials of treatments for Alzheimer’s disease.
Over the past few years, research on Alzheimer’s has exploded. Now, Dr. Aisen said, there are about 200 papers on the subject published each week. There are new scans and other tests, like spinal taps, to find signs of the disease early, enabling researchers to think of testing drugs before patients’ brains are so ravaged. And companies are testing about 100 experimental drugs that, they hope, will fundamentally alter the course of Alzheimer’s disease.
Most of the new drugs target an enzyme, gamma secretase, that snips a big protein to produce beta amyloid. The problem in Alzheimer’s is thought to be an overproduction of beta amyloid — the protein is made in healthy brains but, it is thought, in smaller quantities. Its normal role is not certain, but researchers recently found that beta amyloid can kill microbes, indicating it might help fight infections.
But gamma secretase has crucial roles in the body in addition to making beta amyloid. It removes stubs of proteins left behind on the surface of nerve cells and it also is needed to make other proteins, so completely blocking it would be problematic. Many scientists think that was what went wrong with the Eli Lilly drug, which, researchers say, took a sledgehammer to gamma secretase, stopping all of its functions. Other companies say their experimental drugs are more subtle and targeted, but they may still affect the enzyme’s other targets.
Dr. Greengard found, though, that before gamma secretase can even get started, the protein he discovered, which he calls gamma secretase activating protein, must tell the enzyme to make beta amyloid. And since that newly discovered protein is used by the enzyme only for beta amyloid production, blocking it has no effect on the other gamma secretase activities.
It turns out that the cancer drug Gleevec, already on the market to treat some types of leukemia and a rare cancer of the digestive system, blocks that newly found protein. As a consequence, it blocks production of beta amyloid. But Gleevec cannot be used to treat Alzheimer’s because it is pumped out of the brain as fast as it comes in. Nonetheless, researchers say, it should be possible to find Gleevec-like drugs that stay in the brain.
“You could use Gleevec as a starting molecule,” said Rudolph Tanzi, a neurology professor and Alzheimer’s researcher at Harvard Medical School. “You could change the structure a little bit and try analogs until you get one that does what Gleevec does and does not get kicked out of the brain. That’s possible.”
On a clear, cool summer day last week, Dr. Greengard told the story of his discovery. He sat in a brown chair in his office on the ninth floor of an old stone building on the meticulously landscaped grounds of the university, wearing a soft yellow V-neck sweater and thick-soled black shoes. Alpha lay quietly at his feet.
Dr. Greengard’s assistant ordered lunch — cantaloupe wrapped in prosciutto; ravioli filled with pears, mascarpone and pecorino Romano; cherries; and cookies. But Dr. Greengard, caught up in the tale of his science, asked her to hold off bringing in the food.
“I thought, this is just a horrible disease and maybe there is something I can do about it,” he said.
About a decade ago, Dr. Greengard and his postdoctoral students made their first discovery on the path to finding the new protein — they got a hint that certain types of drugs might block beta amyloid production. So they did an extensive screen of drugs that met their criteria and found that one of them, Gleevec, worked. It completely stopped beta amyloid production.
That was exciting — until Dr. Greengard discovered that Gleevec was pumped out of the brain. Still, he found that if he infused Gleevec directly into the brains of mice with Alzheimer’s genes, beta amyloid went away.
“We spent the next six years or so trying to figure out how Gleevec worked” on gamma secretase, Dr. Greengard said. He knew, though, that he was on to something important.
“I had very little doubt about it,” he said. “If I have an idea, I have faith in it, that it must be right.”
The system he discovered — the gamma secretase activating protein — made sense, Dr. Greengard said.
“Gamma secretase belongs to a family of proteins called proteases,” he explained. Proteases chop proteins into smaller molecules. But often proteases are not very specific. They can attack many different proteins. “Obviously, you can’t have that kind of promiscuity in a cell,” Dr. Greengard said. There has to be some sort of control over which proteins are cleaved, and when.
So, Dr. Greengard said, “what evolved is that proteases invariably have targeting proteins that help them decide which proteins to go after.”
That was what he had found: a targeting protein that sets in motion the activity of gamma secretase, which makes beta amyloid. To further test the discovery, he genetically engineered a strain of mice that had a gene for Alzheimer’s, but he blocked the gene for the gamma secretase activating protein. The animals appeared to be perfectly healthy. And they did not develop plaques in their brains.
For Sangram S. Sisodia, an Alzheimer’s researcher at the University of Chicago, that mouse experiment was critical.
“That was the proof of concept,” he said. It meant that Dr. Greengard was correct — the newly discovered protein, when blocked, does not seem to interfere with other crucial functions of gamma secretase.
“That is good news,” Dr. Sisodia said.
As for Dr. Greengard, he said, “I couldn’t be more excited.”
“I am sure there will be a fervor in the field.”

GOOD DAYS AND BAD DAYS WITH PD

2010-05-27T06:26:00.001-07:00

Just a fleeting thought, my wife and I have devised a food and restaurant rating that we use from time to time.
Perhaps it is time to institute a PD guide for our good days and bad days. We could save a lot of time and energy by using a day rating code. Just to communicate to whomever and the world how we feel on any particular day. We could keep a log and chart our feelings, sort of a doctor visit sheet. "Hi, GG" or " Hi, GB "

   P. D GOOD DAYS/BAD. DAYS RATING SYSTEM

GG       GOOD GOOD DAY
AG       ACCEPTABLE GOOD DAY
IG       IMPROVING GOOD DAY
BG       BAD GOOD DAY

BB       BAD BAD DAY
AB       ACCEPTABLE BAD DAY
IB       IMPROVING BAD DAY
GB       GOOD BAD DAY

I hope it is GG for you today.

APRIL IS PARKINSON'S AWARENESS MONTH/EMPATHY

2010-04-25T06:15:00.000-07:00

I got a call a few days ago from a friend of an old friend of mine. It seems this ladie's husband has had PD for ten years.
He is not doing well and the rate of progression is of a concern. He cannot walk by himself anymore and has other advanced problems associated with PD.
His only treatment is Carbadopa/Levadopa 25/100 four times a day. He is depressed and cannot find himself in an upbeat mood anymore.
I am not a doctor just a PD patient with 13 year on the journey and not offering medical advice, just my observation.
As I understand the situation as described via the telephone, this person's neurologist thinks he is overmedicated.
April is Parkinson's awareness month.
With all the advancement in treatments in the last few years, you might wonder why so many PWP are not aware of the various alternatives and do not get that comprehensive and all inclusive care that is so vital to the quality of life of the whole person. Parkinson's is a fickel disease, ever changing with many surprises. Those who provide medical care should be addressing the whole person and learn from their patients how and when changes occur. There is ample research to show and share, teaching us that PD affects us in different ways and cannot be treated with a rubber stamp philosophy.
I have empathy for the person I first mentioned.
Hoping for better days ahead.

Zebrafish model to understand Parkinson’s developed | TheMedGuru

2010-04-25T05:43:00.000-07:00

Zebrafish model to understand Parkinson’s developed | TheMedGuru

APRIL IS PARKINSON'S AWARENESS MONTH/NEW VOICE TEST

2010-04-16T19:40:00.001-07:00

WE ARE JUST OVER THE HALFWAY MARK,
ARE YOU HALFWAY AWARE OF P.D. ???

Now, a voice test to predict Parkinson's!

PTI, Apr 16, 2010, 02.52pm IST

&amp;lt;a href="http://netspiderads2.indiatimes.com/ads.dll/clickthrough?slotid=36459" target="_blank"&amp;gt;&amp;lt;img src="http://netspiderads2.indiatimes.com/ads.dll/photoserv?slotid=36459" border="0" width="660" height="40" alt="Advertisement"&amp;gt;&amp;lt;/a&amp;gt;

Now, a voice test to predict Parkinson's! (Getty Images)

View Images

In what could be called a major breakthrough, scientists claim to have developed a voice test which can predict Parkinson's disease years earlier in people.

Parkinson's is normally only diagnosed once symptoms show -- meaning it's already at an advanced stage and patients have lost a significant number of brain cells. Now, an Israeli team has devised a test to predict the neurological disorder.

In their research, the team from Haifa University have discovered that by measuring tiny changes in speech patterns, undetectable to human ear, they can tell whether a seemingly healthy person is a sufferer.

Accordingly, they developed a computer programme that can identify a Parkinson's "voice", which they claim could be used for screening those who are at the hereditary risk of the disease or as part of a national screening programme, British newspaper the Daily Mail reported.

Speech is affected by the disorder because it causes a deterioration of muscles in the neck and mouth -- giving some sufferers a husky voice. But the change is apparent to human ear after the disease has been diagnosed through symptoms such as rigid muscles, tremors, slow movement, and loss of balance.

The new test needs only a couple of sentences from patients, say the scientists.

APRIL IS PARKINSON'S AWARENESS MONTH/A COMMUNITY

2010-04-11T02:31:00.000-07:00

NOT JUST FOR PD
Understanding and support from those who know.....
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APRIL IS PARKINSON'S AWARENESS MONTH/ APATHY

2010-04-10T06:59:00.001-07:00

Apathy in people with Parkinson's 'shows the condition is getting worse'

Healthcare News
09/04/2010
Apathy among people with Parkinson's disease is a sign that the condition is getting worse, claims a new scientific study.
A new scientific study suggests that apathy shown by a person with Parkinson's disease is a sign that the condition is worsening.

Research published in the Journal of Neurology, Neurosurgery and Psychiatry suggest that apathy can be caused by changes in the brain resulting from the condition, Parkinson's UK reports.

The Norwegian study followed a group of 79 people diagnosed with Parkinson's disease over a four-year period.

Commenting on the findings, Parkinson's UK's director of research Dr Kieron Breen said: "This is an important study that helps increase our knowledge and understanding of one of the common non-movement related symptoms of Parkinson's."

He went on to say that the charity's own research had found apathy to be a common symptom, while understanding why people with the condition may be apathetic may help carers.

One in every 500 people in the UK has Parkinson's disease, equating to around 120,000 people living with the condition, according to Parkinson's UK.

APRIL IS PARKINSON'S AWARENESS MONTH/ COLD-HOT

2010-04-08T12:38:00.000-07:00

BE AWARE:
If it is not one thing it is just another. At least that is how I find it. Cold is bad for many PWP and now we have a quick swing into summer ( and it's only April) so I am now working my way through the 88 degree heat. The swing only brings stress and as I''ve said before, Stress is a Mess. Hoping for a less messy day tomorrow, but as we know PD is fickle and sometimes unpredictable.
Just so you know.

APRIL IS PARKINSON'S AWARENESS MONTH/ VOCAL CORD CHECK

2010-04-07T20:00:00.001-07:00

Well to all the followers of this journey, I must report today was a first for this PWP.
My P.A.D.R.E.C.C. Doctor has taken the time to order an audiology testing and an appointment with a speech pathologist. Both testing and consultations are completed. In the process they had scheduled me to see an ENT specialist..that was today's experience. I have been cleared to get state of the art hearing aids ( I have a symmetrical hearing loss) and then the nice Doctor proceeded to let me know the next procedure to view my vocal cords. A little numbing spray up the nose and down goes a lighted minicam through the nostrils to target.Thank goodness my cords are clear. Now I can look forward to a long course of therapy to overcome the effect of PD on my voice and speech.
I continue to be thankful for such a comprehensive approach to patients with Parkinson's.
THIS IS PARKINSON'S AWARENESS MONTH.

APRIL IS PARKINSON'S AWARENESS MONTH

2010-04-03T03:56:00.000-07:00

ARE YOU AWARE?

DO YOU KNOW WHAT IT IS ALL ABOUT?

DID YOU HAVE YOUR HEAD IN THE SAND?

BE AWARE.

LOOK ME IN THE EYE AND PROMISE TO BECOME INFORMED

IT IS SOMETHING YOU MIGHT ENCOUNTER, OLD OR YOUNG

A PD VACCINE? WHO KNOWS?

2010-03-03T05:22:00.000-08:00

UNMC researchers make progress on Parkinson's vaccine

(3/02/2010) KHAS-TV - Parkinson's Disease affects a million Americans. And, there is no cure. But researchers at the University of Nebraska Medical Center are making progress.

Researchers are developing a vaccine that slows the degeneration of nerve cells in the brain that link to motor activity.

Early results in mice show improvement in damaged cells. The findings may give researchers more insight into what causes Parkinson's and a possible cure.

"This is not a vaccine that will cure it. This is a vaccine that will halt its progression," said Dr. Howard Gendelman.

It is unknown if long time sufferers would benefit from these findings. The vaccine is being tested on humans and will be tested at UNMC within the next month. FDA approval of any vaccine is still a few years away.

WINTER WONDERLAND or A WEEKEND TO WONDER

2010-02-26T06:06:00.000-08:00

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.

2010-02-21T14:50:00.001-08:00

INSTANT CATARACTS or MY NEWEST PD CONCERN

2010-02-19T04:23:00.000-08:00

NUMBNESS, TINGLING & BURNING SENSATION OR INSTANT CATARACTS.

Many years ago my wife and I dined at a now defunct but most wonderful Mexican restaurant in New York. We were served our Margharitas and they were the best. Without ordering a second drink, our host arrived with what seemed to be a sink sized drink for each of us. We took our time and enjoyed our freebie. We had ordered our food when we placed the original drink order and about an hour had passed since then. We were finally served and found out the freebie and long wait was due to the Immigration Service raid on the kitchen help left the restaurant without any help with the exception of our host and his partner.
We didn't seem to mind since we were half looped by the tub sized drinks.
The next morning I was wakened by my wife's agitated cries for help.....
She had developed INSTANT CATARACTS overnight.
All ended well, she forgot to remove her contact lenses (thanks to the tub sized drink).
What has this to do with PD and me, well it seems I have developed instant and painful numbness and a burning tingling in my right arm and hand. It had occurred every so often in the past and I was told it had to do with a pinched nerve in the neck. It seems we PWP have neck issues.
For the last three days it has not subsided nor lessened in the pain factor. I had a stressful 12 days of traveling in the storms (ice/snow), exhibiting in a less than productive show, driving back in ice/snow, shoveling out my car from under 20+ inches of snow and keeping our aging Molly dog from freaking out at the depth of snow where she normally "goes".
I don't know now if this is the result of a pinched nerve or if something else is going on. I don't recall all the side effects of my meds, but somewhere I remember seeing something on the subject of numbness.
I will contact my MDS about this. I have already had a neck and upper spinal MRI and she saw nothing to be alarmed at. The normal aging process, arthritis,etc.
Has any one out experienced this???

WILL THE FAT LADY SING ? THAT IS THE QUESTION OF THE DAY.

2010-02-15T03:37:00.001-08:00

The show is over. The anxiety of the trip to Nashville and the setup has passed. The shorter show schedule this year leaves us wondering who might have returned on Sunday (as is the custom at this show) to make their purchase. So, We ask will the fat lady sing? Time will tell.
While waiting for the answer we have new challenges. An unwanted but needed truck repair and a new winter storm to travel home with. Neither one is without tension and stress.

So goes the way of this President's day holiday.
The journey continues.

Three brain diseases linked by toxic form of same neural protein

2010-02-03T04:38:00.000-08:00

Three brain diseases linked by toxic form of same neural protein

FYI A PROBLEM FOR MANY.

2010-02-03T04:31:00.000-08:00

Parkinson's disease research uncovers social barrier

Science Centric (3 Feb 2010 12:04 GMT) - People with Parkinson's disease suffer social difficulties simply because of the way they talk, a McGill University researcher has discovered. Marc Pell, at McGill's School of Communication Sciences and Disorders, has learned that many people develop negative impressions about individuals with Parkinson's disease, based solely on how they communicate. These perceptions limit opportunities for social interaction and full participation in society for those with the disease, reducing their quality of life. Pell's research offers the public a better understanding of the difficulties these patients face - as well as an opportunity to promote greater inclusiveness... [full story]

LIFE AND TIME

2010-01-27T04:38:00.001-08:00

January 27, 2010
EDITORIAL | APPRECIATIONS
A Responsible Man
By ROBERT B. SEMPLE Jr.
The news that Charles “Mac” Mathias had died at 87 of Parkinson’s disease aroused fond memories of a
slightly round and rumpled man who drove a battered blue station wagon to his Senate office and
sometimes brought his black Labrador retriever with him.
It also brought back memories of a time when legislative combat could be as fierce as it is now but when
there seemed to be more room for independent judgment — or, more accurately, when there were more
legislators willing to ignore their party’s disciplinarians and demagogues and act on principle alone. Mr.
Mathias, a Republican variously described as moderate or liberal, was just such a person. He represented
Maryland for 26 years in Congress, eight in the House and 18 in the Senate, before retiring in 1987.
Though he never considered leaving the Republican Party and supported Richard Nixon in 1968 and 1972,
he was one of President Nixon’s most nettlesome opponents on legislation and the Vietnam War. He was an
early champion of campaign finance reform (never accepting a contribution, after Watergate, of more than
$100) and opposed the death penalty.
His signature issue was civil rights. It is not much remembered, but when President John F. Kennedy failed
to submit a promised civil rights bill, three Republicans introduced one of their own. This inspired Mr.
Kennedy to deliver on his promise, and it built Republican support for what became the Civil Rights Act of
1964. The three were Representatives William McCullough, John Lindsay and Mr. Mathias.
The lofty way to describe him would be to say that he voted his conscience. But as he saw it, he was simply
voting for things that everyone of conscience ought to support: respect for constitutional rights, respect for
the environment, respect for the balance of powers.
He once told The Times’s Tom Wicker that the senators he most admired were Democrats J. William
Fulbright, Mike Mansfield and Philip Hart, and Republicans John Sherman Cooper, Jacob Javits, George
Aiken and Clifford Case.
Why these? “Individual responsibility,” he answered. “Each one of these people would take an issue on his
own responsibility. They wouldn’t have to have the cover of some ideology. They’d simply come to the
conclusion that this was the right thing for the country.” That describes Mac Mathias.
Copyright 2010 The New York Times Company

LIFE AND TIME

2010-01-20T04:32:00.000-08:00

Taco Bell Founder Dies at 86
Glen W. Bell Jr. opened the first Taco Bell in Downey, California, in 1962.
By Courtney Rubin
Inc.'s Small Business Success Newsletter
Inspiring profiles and best practices for savvy business owners.
Glen W. Bell Jr., whose inspiration to put tacos on the drive-in menu  created the 5,600-unit Taco Bell chain, died Sunday, the company  announced on its website.
The entrepreneur was 86, and had suffered from Parkinson's disease since 1985. No cause of  death was released.
Bell—who spent his childhood peddling produce—decided he wanted  his own food stand after spending a summer in high school in Washington  working with a great aunt, learning how to bake blackberry pies and then  selling them as Mrs. Dye's Homemade Pies. (He took home half of the  $3,000 profit.)
After studying the successful McDonald's restaurants, in 1948 Bell  opened Bell's Drive-In in San Bernardino, California. He began by serving the  usual hamburgers and hot dogs, then in 1951 added a twist: Mexican  food, namely 19-cent tacos. He also worked on other fastfood  ventures, among them the first Der Weinerschnitzel hot dog stand, with  his employee John Galardi. Galardi later turned the concept into his  own 400-unit chain. Ed Hackbarth, another employee, left to open a competing drive-in that became the Del Taco chain.
With $4,000 raised from family and friends—no bank would give him a loan—Bell's first Taco Bell started serving in Downey, Calif., in 1962. He quickly opened another eight restaurants, fulfilling a  craving for Mexican food (or at least a fastfood version of it) people didn't know they had. When the first  Taco Bell in Florida opened November 29, 1967, for example, residents were so clueless  about the cuisine that Bell had to run advertisements defining menu  tems and showing how to pronounce them. ("Yo quiero Taco Bell" and  that now-famous Chihuahua didn't arrive until 1997.) In 2008, the  singer Fergie gave the chain perhaps the ultimate shout-out, writing  the lyrics "I'm no queen...I still go to Taco Bell, drive through" in her hit song "Glamorous."
"I always smile when I hear people say that they never had a taco  until Taco Bell came to town," Bell told Nation's Restaurant News in 2008, when the trade publication  honored him with its Pioneer Award. "We changed the eating habits of  the entire country."
Bell sold his first Taco Bell franchise in 1964 and sold the parent company to PepsiCo  for $130 million in 1978. At the time of the acquisition, Taco Bell had 868 stores. The brand is now owned by  Pepsi spinoff Yum Foods, the world's largest restaurant holding company.
"With Glen Bell's passing, we've lost one of our country's great  entrepreneurs and innovators, but his legacy lives on in our people  and our brand," Greg Creed, Taco Bell's president and chief concept  officer, said in a statement on the company's web site.
Bell also leaves behind a personal business philosophy, which he enumerated in his 1999 biography Taco Titan as part of a list of 60 Recipes for Success that touched on the personal as well as the practical considerations of running a business. Among them: No. 10. When you overextend yourself financially, it's twice as hard to get ahead, No. 21 Don't sell  everything customers ask for, and No. 52: Your quality of life depends  on your attitude.
Reprint from INC magazine article. Copywrited 2010 INC.

THE PASSAGE OF TIME AND LIFE

2010-01-20T04:22:00.000-08:00

'Love Story' author Erich Segal dies at 72

By Matt Schudel
Washington Post Staff Writer
Wednesday, January 20, 2010; B05

Erich Segal, a onetime classics professor who collaborated with the Beatles on a movie and whose sentimental 1970 screenplay and novel, "Love Story," became a pop-culture phenomenon, died Jan. 17 of a heart attack at his home in London. He was 72 and had battled Parkinson's disease for 25 years.

Mr. Segal, who taught Greek and Roman literature at Yale University, might have been an unlikely author of a heart-tugging tale of doomed romance, but his story captured the spirit of the time, and its signature line became a catch phrase: "Love means never having to say you're sorry."

Mr. Segal dabbled in screenplays for years, and he said his writing credit on the Beatles' "Yellow Submarine" in 1968 elicited open-eyed admiration from students and professors alike.

He had originally written "Love Story" as a screenplay about the star-crossed love between a working-class Italian girl from Radcliffe and a Harvard boy from an old family. The 1970 film, which starred Ali MacGraw and Ryan O'Neal and became a huge hit, was in production before Mr. Segal reworked it as a novel. When "Love Story" was released in paperback, it had the largest print order in the publishing history at the time, with 4,325,000 copies.

Although Mr. Segal's work resonated with the public, critics almost uniformly lambasted it. The judges for the National Book Award threatened to resign unless "Love Story" was withdrawn from nomination.

"It is a banal book which simply doesn't qualify as literature," said novelist William Styron, the head judge of the fiction panel. "Simply by being on the list it would have demeaned the other books."

Mr. Segal was thrust from the life of a scholar to that of a jet-setting star. He appeared on "The Tonight Show" with Johnny Carson four times in four weeks, was a judge at the Cannes Film Festival and was nominated for an Academy Award for best screenplay. He made weekend jaunts to Paris and London, returning to Yale for his classes on classical civilization, which filled a 600-seat auditorium and were among the most popular at the university.

"I'm kind of a folk hero there -- the closest thing they have to a Beatle," he told The Washington Post in 1970.

Mr. Segal also parlayed his love of running and knowledge of ancient Greece into a job as an ABC TV commentator for the Olympic Games.

Yale decided that Mr. Segal's extracurricular assignments were taking too much time away from his academic work and denied him tenure in 1972, a blow that took years to overcome. He continued to lead his intellectual double life as a popular novelist and serious scholar, publishing best-selling novels and works on ancient literature, but he remained puzzled at the mockery and anger of the literary elite.

While jogging in New York's Central Park, Mr. Segal once recalled, he saw novelist Philip Roth and said, "I admire your work."

"And I admire your running," Roth replied.

Mr. Segal said that he got swept up in the glamour and adulation of his "Love Story" fame.

"That kind of early success really turns your head," he told the Chicago Tribune in 1985. "You think you're invincible, you're infallible and that your star will shine forever, when in fact they'll be looking for somebody else next week."

Erich Wolf Segal was born June 16, 1937, in Brooklyn, N.Y., and was the son of a rabbi. He studied Hebrew and other languages from an early age and became fluent in German and French, as well as Latin and Greek.

At Harvard, he received a bachelor's degree in 1958, a master's degree in classics in 1959 and a doctorate in comparative literature in 1965. He published books on the Greek tragedian Euripides and the comic Roman playwright Plautus before writing "Love Story."

Mr. Segal's academic works received better reviews than his fiction, and he continued to write about classical literature for decades. His long-awaited history of comedy from ancient Greece to the modern era, "The Death of Comedy," appeared in 2001. After being denied tenure at Yale, Mr. Segal settled in England, where he became a fellow at Oxford University's Wolfson College.

He began running the Boston Marathon in 1955 and once completed the course in 2 hours, 56 minutes, 30 seconds. He ran 10 miles every day and played piano quite well before he was stricken by Parkinson's disease in the mid-1980s.

Mr. Segal never recaptured the level of success he had with "Love Story," although several of his later novels, including "Oliver's Story" (1977), "Man, Woman, and Child" (1983), "The Class" (1985) and "Doctors" (1987), were bestsellers, and several were made into movies.

In 1997, he disputed a rumor that "Love Story" was based on the college romance between Al and Tipper Gore. He did acknowledge that he had known Al Gore and his Harvard roommate, actor Tommy Lee Jones, in 1968 and drew on their lives for the central male character of "Love Story," Oliver Barrett IV.

Survivors include his wife of 34 years, Karen James, and two daughters.

"When I find myself feeling guilty for all that success and thinking 'Love Story' was overrated," Mr. Segal said in 1988, "I pull out my Encyclopedia Britannica and see myself listed as writing in the tradition of the classic sentimental novelists, and then my ego relights.

"It was my little Camelot and it can't be taken away. It was my idyll."

© 2010 The Washington Post Company

Genetic risk factor identified for Parkinson's disease

2010-01-16T06:18:00.000-08:00

Click on the link below for the full article.

Genetic risk factor identified for Parkinson's disease

THE DOPAMINE FACTOR RE-VISITED

2010-01-10T04:48:00.000-08:00

BBC NEWS
Mind chemical 'controls choice'

Dopamine, a chemical with a key role in setting people's moods, could have a much wider-ranging impact on their everyday lives, research suggests.

Experiments show that altering levels of the chemical in the brain influences the decisions people make.

One expert said the results showed the relative importance of "gut feeling" over analytical decision making.

The Current Biology study could help understand how expectation of pleasure can go awry, for example in addiction.

It follows previous research by the University College London team, which, using imaging techniques, detected a signal in the brain linked to how much someone enjoyed an experience. They found that signal could in turn predict the choices a person made.

With the suspicion that the signal was dopamine, the researchers set up a study to test how people make complex decisions when their dopamine system has been tampered with.

The 61 participants were given a list of 80 holiday destinations, from Greece to Thailand, and asked to rate them on a scale of one to six.
“ Dopamine has a role in signalling the expected pleasure from those possible future events ”
Tali Sharot Wellcome Trust Centre for Neuro-imaging

They were then given a sugar pill and asked to imagine themselves in each of 40 of the destinations.

Researchers then administered L-Dopa, a drug used in Parkinson's disease to increase dopamine concentrations in the brain, before asking them to imagine the other holidays.

They rated all the destinations again, and a day later they were asked where they would prefer to go, out of paired lists of holidays.

The extra dopamine gave people higher expectations when rating holiday options.

And that translated into the choice of trip they made a day later.

Study leader Dr Tali Sharot, from the Wellcome Trust Centre for Neuro-imaging at UCL, said humans made far more complex decisions than other animals, such as what job to take and whether to start a family, and it seemed dopamine played an important part in that.
“ It is a sort of shortcut in our thinking ”
Professor John Maule Leeds University

She said they had been surprised at the strength of the effect they had seen.

"Our results indicate that when we consider alternative options when making real-life decisions, dopamine has a role in signalling the expected pleasure from those possible future events.

"We then use that signal to make our choices."

Dr Sharot added that addicts overestimated the pleasure they would gain from something, be it heroin or gambling, because their dopamine system was dysfunctional, and the latest research underpinned that the choices they made would be influenced by that.

Gut instinct

She added: "For many conditions we have medication which changes dopamine function, so knowing we may be changing people's expectations and their decision making might change how we think about giving these types of medications."

Professor John Maule, an expert in decision making, at Leeds University Business School, said that in recent years people had begun to realise emotional or "gut instinct" decision making was just as important in human choices as analytical decision making.

"At any one time you will have both these processes going on, so it's not surprising to see these results, especially when it comes to emotionally based decisions, such as holidays.

"It is a sort of shortcut in our thinking."
Story from BBC NEWS:
http://news.bbc.co.uk/go/pr/fr/-/2/hi/health/8357739.stm

Published: 2010/01/08 17:16:11 GMT

© BBC MMX

WHAT'S AHEAD IN HEALTH ???

2010-01-10T04:35:00.000-08:00

HERE IS WHAT ONE PERSON THINKS.
What's ahead in health? Longer lives, focus on
obesity.
BY CHRIS ZDEB, CANWEST NEWS SERVICE JANUARY 5, 2010
You might call Dr. Axel Meisen a fortune teller.
As the chairman of foresight with the Alberta Research Council, he has the task of
predicting issues of importance to the province 20 to 30 years down the road. And when it comes to medicine, Meisen sees changes ahead. Here he lists the 10 health trends we're most likely to see by the end of 2019.
"This all sounds really magical and (like) far-out medicine," Meisen says, "but I think it's coming and is within reach."

More birthdays
Most people now live into their 80s, but within 10 years, average life expectancy will begin
to approach 95 to 100 years. Reputable physicians say there's nothing much stopping us
from living to be 130 or 140, Meisen says, adding increased longevity will be mainly due to
better lifestyle choices.
More genetically caused diseases
Living longer means we're going to see more genetically influenced diseases typically
associated with longevity, such as Alzheimer's and Parkinson's, Meisen says. Thanks to
the mapping of the human genome (the complete set of human genetic information), we're
getting closer all the time to understanding the causes of those diseases.
The overweight and obese will become the new smokers
With smokers dwindling in number, health advocates will turn their attention to whittling the
number of overweight and obese people, who further tax a health-care system groaning
under the weight of skyrocketing costs. More evidence will emerge that an unhealthy
weight is as bad for your health as smoking.
We'll start eating better
More people, including aging baby boomers, are aware of the link between good nutrition
and good health. Realizing much of the control rests in their hands, they're trying to eat
better and be more active, Meisen says, especially since they're going to live longer and
What's ahead in health? Longer lives, focus on obesity.
they don't want to spend the last years of their lives bedridden and riddled with disease.
Hardware will replace healing hands
Today's tele-health or tele-medicine, (delivering health-related services and information via
telephone, e-mail or video) is just the beginning. Gradually, doctors, nurses and other
health-care providers will be replaced by hardware and software, Meisen says.
Instead of a doctor poking and prodding at a patient, a machine will make an initial
diagnosis by measuring blood pressure, heart rate and weight, and maybe taking an
internal image of the body. By the end of the decade, most patients will be diagnosed by
physicians who aren't in the same room. This won't reduce the number of physicians
needed, but will free more of them to study data collected by advanced technology to
make a better diagnosis and decision about treatment, Meisen says.
Improved personal hygiene
We're already seeing a stronger link between handwashing and health, Meisen says.
Many infectious diseases are caused by poor hygiene in food preparation or in the home,
and more people will become aware of that, and improve their cleaning routines
accordingly.
On a public health level, this issue is already being addressed by removing the main doors
on public washrooms and having water, soap and hand towels or dryers triggered by
motion sensors.
Attention will now turn to making buses and LRT less hands-on, Meisen says.
Enhanced surgical procedures
Continued improvements to surgical procedures mean smaller incisions that require
shorter hospital stays and less time to heal. With robots, doctors can do things on a "micro
scale" that even the best physicians with the best hands and eyesight would have trouble
doing, Meisen says.
Today, open-heart surgery is still a very complicated, protracted procedure, but he expects
it to be shortened and simplified over the next 10 years because of new technology.
Cure for cancer possible
A cure for cancer depends on a breakthrough, which is extremely difficult to predict, but
the odds improve the more people work on it, Meisen says, and there are a lot of people
What's ahead in health? Longer lives, focus on obesity.
working on it.
More body parts replaced
Meisen expects significant advances in the development of replacement parts for the
body. We can already do simple replacements, for skin to treat burn victims, for example.
But we'll probably be able to replace tissue, muscle and some simple organs by the end of
the decade, reducing dependence on finding perfectly matched donor organs for
transplant, Meisen says.
The promise lies in research on stem cells and use of substrate (developing artificial body
parts or implants) into which you can grow things like muscle and skin, he explains. By
2019, we should be able to grow bone, eliminating the need to use metal pieces for repair.
We might also be able to develop an artificial kidney that is not a machine.
Into the mind
Sophisticated imaging techniques such as the functional MRI allow researchers to map
the way the mind works. Being able to study the living brain in action provides researchers
with information about depression, brain cancer, autism and memory disorders, bringing
them a step closer to figuring out how to possibly rewire it, though this is not likely to be
achieved in the next 10 years.
Edmonton Journal
czdeb@thejournal.canwest.com
© Copyright (c) Canwest News Service

COLORED LIGHTS AND PARKINSON'S

2010-01-08T04:28:00.000-08:00

How about this?

Scientists Use Colored Lights to Program Brain Activity
Jessica Berman | Washington 07 January 2010
Scientists in the United States have developed a powerful new method to help calm
the abnormal brain activity associated with diseases such as epilepsy and Parkinson's.
The technique involves the use of laser light stimulation of special proteins implanted in
key areas of the brain.
So-called neural "super silencers," were developed by scientists at Massachusetts
Institute of Technology from two genes found in fungi and bacteria. The genes, called
Arch (ARK) and Mac, are responsible for making light-sensitive proteins that help the
organisms convert light into energy.
But when those genes are inserted into the brain, neurons can be engineered to
express the proteins, making it possible to manipulate them with a laser beam and calm
irritated nerve cells that are responsible for epilepsy, Parkinson's disease and chronic
pain syndromes.
Ed Boyden is a professor of brain and cognitive sciences at MIT. He is the lead author of
a study that showed how neurons containing the genes could be turned on and off
with pulses of laser-beam light. "If you could turn off those neurons that are behaving
inappropriately just for the right amount of time, that allows you to cancel out the
aberrant neural dynamics with fewer side effects than if you were to bathe the entire
brain in a pharmacological agent," he said.
Boyden says the laser light activates the genetically modified brain cells, lowering the
voltage in the neurons and stopping them from firing inappropriately.
"We've shown in the current paper that we could express these molecules from fungus
and archi-bacteria and so on and they would express just fine for months in mice. And
we also showed we could get safe and effective optical silencing of these neurons.
When we turned the light off, the neurons just go back to their normal activity," he said.
Scientists are now trying to develop a neural feedback system that would become
Scientists Use Colored Lights to Program Brain Activity | S... http://www.printthis.clickability.com/pt/cpt?action=cpt&t...
1 of 2 1/8/10 7:25 AM
active when brain cells start to become over-stimulated, as in the case of epilepsy. "So,
for example, one of the things we are working on is can we detect a certain brain state
using electrodes the same way that it's been done for almost a hundred years and use
it to monitor the brain and then deliver a pulse of light just at the right time to shut down
a pathological state in the brain," Boyden said.
With the new tools, Boyden says researchers may someday be able to identify and
correct complex neural networks that lead to disease by engineering different neurons
to respond to different colors of light.
For example, in the study, researchers found that brain cells implanted with the Arch
gene were silenced by yellow light, while neurons modified by the Mac gene were
silenced by blue light.
"We're screening even more species now to try to broaden our ecological biodiversity
screen. But we're also starting to do longer and longer measurements of the safety and
efficacy in more clinically interesting scenarios," he said.
Boyden's team has begun experimenting with light-sensing proteins to calm the brains
of non-human primates.
While the use of light tools to treat human brain diseases is still a long way off, Boyden
says other researchers are starting to use the technology to develop new and improved
drugs.
Ed Boyden and colleagues describe their work programming brain activity with lightsensing
genes this week in the journal Nature.
Find this article at:
http://www1.voanews.com/english/news/science-technology/Scientists-Use-Colored-Lights-to-Program-Brain-Activity-80964302.html

WELCOME 2010....IS THIS THE YEAR?

2009-12-31T02:41:00.000-08:00

Is this the year we find the cure for Parkinson's Disease? HOPE

PDF IN 2009

2009-12-29T16:13:00.000-08:00

HELPING TO GET TO THE GOAL

EXCERPTS FROM PDF

PDF’s Top Ten List 2009

Funded $5 million through our diverse research programs to support the best scientific investments in Parkinson’s, including three leading Parkinson’s research centers and 24 individual investigators.
Continued our commitment to training future leaders in Parkinson’s through our Fellowship and Career Development Programs, which supported 42 fellowships for researchers, clinicians and medical students.
Remained responsive to new and existing research opportunities, including awarding $300,000 in emergency bridge funding to four leading Parkinson’s scientists and ramping up support for the promising Longitudinal and Biomarker Study in PD (LABS-PD) Project.
Advanced the state of clinical research to improve the development of new therapies for Parkinson’s by preparing 37 people with Parkinson’s to become clinical research advocates through our Second Clinical Research Learning Institute and by laying groundwork, through a series of roundtable discussions, for a clinical study to investigate the therapeutic potential of exercise.
Hosted a new series of online educational programs to ensure all people with Parkinson’s have access to the latest information from the leaders in the field. The seven programs attracted almost 7,000 registrants.
Advised, through our National HelpLine and Ask the Expert service, thousands of people with Parkinson’s, family members and health care professionals from all 50 states and six continents, on issues relating to diagnosis, treatment, caregiving and more.
Distributed 50,000 free educational publications to people around the US and around the world, to ensure people with Parkinson’s are armed with the facts and resources they need to live well.
Celebrated our fourth year working with our People with Parkinson’s Advisory Council, a group of 13 individuals who advise PDF on its programs.
Recommitted ourselves to our new financial assistance program (established in 2008 with an annual $50,000 grant to the Melvin Weinstein Parkinson's Foundation) for people with Parkinson’s to cover emergency needs, such as the purchase of wheelchairs, walkers and canes as well as home care and other assistance.
Was rated a Four-Star Charity by Charity Navigator, making PDF the only Parkinson’s Charity to receive both this and the Charity Seal of Approval from the Wise Giving Alliance of the Better Business Bureau (BBB).
In 2010, with your help, PDF will continue to support you and your loved ones with Parkinson’s through our research, education and advocacy programs. Your gift, if given before December 31st, will also give you the benefit of a tax-deduction on your 2009 return.

Please accept our appreciation for your support and our best wishes for a happy and healthy new year.

Robin Anthony Elliott

If you have or believe you have Parkinson’s disease, then promptly consult a physician and follow your physician’s advice. This email is not a substitute for a physician’s diagnosis of Parkinson’s disease or for a physician’s prescription of drugs, treatment or operations for Parkinson’s.

www.pdf.org |Contact Us|PINS Helpline: (800) 457-6676
© 2009 Parkinson’s Disease Foundation, Inc.

STORM TRACKER

2009-12-19T01:05:00.000-08:00

It is Friday night 12/18/2009.
All you hear about on the news (east coast U.S.A.) is storm warnings and watches. Predictions of the worst in 43 years for a pre-Christmas winter storm.
As I see it not all predictions come to pass. We have been in an economic storm for over two years. Not all predictions come to pass.
Some say the storm has passed.
Some say the storm continues.
Some say the storm is getting worse.
Some say the storm is getting better.
Some say, "what storm"????

It all depends on where you stand, sit, or whatever.

I guess we will see.

PARKINSON'S--THAT FICKLE DISEASE

2009-12-19T00:20:00.000-08:00

fickle |ˈfikəl|
adjective
changing frequently, esp. as regards one's loyalties, interests, or affection : Web patrons are a notoriously fickle lot, bouncing from one site to another on a whim | the weather is forever fickle.
DERIVATIVES
fickleness |ˈfɪkəlnəs| noun
fickly |ˈfik(ə)lē| |ˈfɪk(ə)li| adverb
ORIGIN Old English ficol [deceitful] .

PD(Parkinson's Disease) oh yes, it can be fickle, unpredictable. Just ask someone who travels down the road with PD.
You say you don't know anyone with PD. Well I bet you do, even if you are not aware of it. It has been written that a person diagnosed with PD more than likely was afflicted eight or ten years before being told, "You Have Parkinson's Disease (that's not what you want to hear).
PD is more prevalent than most people realize. Young Onset P D is a growing concern. I was fortunate to not fall into that category and most fortunate to be slow at progressing since my diagnosis in 2000.
My journey with PD has taught me many things and introduced me to people that are amazing in their life and times with PD, patients, caregivers and medical professionals and researchers.
Yet, here we are, shaking the world and still no cure in sight. Hopefully the funds for research and care will not be cut in these turbulent times.

Journeying through uncharted waters, better days ahead.

2009-12-16T08:38:00.001-08:00

THE V A and PARKINSON'S DISEASE

2009-12-14T13:10:00.000-08:00

Once again I am impressed with the Veteran's Administration Parkinson's program. They are truly on top of things and most cooperative and understanding of the various problems encountered by PD patients.

One of the best things since tips on shoelaces.

CHANGING PARKINSON'S MEDS. CAN BE SCARY.

2009-12-14T01:40:00.000-08:00

In the past eleven years since I was diagnosed with Parkinson's Disease, I have endured the fear and panic of adding medications to control the symptons of PD (as we all know there is no cure yet). When you know you are signing on for a lifetime of putting more and more foreign things into your body--you worry and become concerned that this is just a "shooting from the hip" process.
Parkinson's is such a fickle disease, you hardly ever know what's around the corner, until you get there.
Well, my latest fun was weaning myself off one medication and adding another.
MISERY, that's what I call this past few days. I now await the open office hours of my PD specialist, hoping for an answer, but I do remember the Doctors are still practicing medicine.
I look forward to better days ahead.
'Till next time.

A LUCKY VETERAN--P.A.D.R.E.C.C.

2009-12-05T15:55:00.000-08:00

The Veterans Administration should be proud of their participation in the research, education and treatment of Parkinson's Disease.
This journeyman with PD has finally made the move to become one of the lucky veterans participating in this all inclusive program.
I am just getting started and will update my progress and experiences along the way.
'til then,
HAPPY TRAVELS

ACCLAMATIONS

2009-11-01T03:47:00.000-08:00

A newly diagnosed friend faced the reality of his new found experience. A long and tricky journey.
He has come into the roadway doing better than most. A quick learner. Kudos

A new Doctor/Patient relationship has also been established, on a high note.

I have nothing but praise for one of the finest professionals I know of, Claire Henchcliffe, M.D.

FRIENDS

2009-09-08T17:10:00.000-07:00

WHY CAN'T WE ALL BE FRIENDS?

WE WERE FOUND, (AGAIN)

2009-07-07T06:43:00.001-07:00

LOOK FOR US AND OUR CHAIR IN THE LATEST ARCHITECTURAL DIGEST.

THIS MADE ME SMILE.

2009-04-12T10:06:00.000-07:00

AS SEEN IN THE BRIDGEHAMPTON COMMONS PARKING LOT, EASTER SUNDAY.

APRIL IS PARKINSON'S AWARENESS MONTH

2009-04-01T06:14:00.000-07:00

PARKINSON'S AWARENESS MONTH-APRIL

2009-03-04T02:03:00.000-08:00

Riding with a purpose
Parkinson's patient raising awareness, funds for research
Wednesday, February 25, 2009

When Larry Bowen's friend suggested that they ride bicycles across the country, Bowen asked, "Why?"
"I never thought I would do something like this, but now we can do it for something important," he said.
Bowen, 57, of East Pennsboro Twp., and his friend, Ed Thomas, are taking part in a 2,600-mile, coast-to-
coast bike ride sponsored by the Davis Phinney Foundation to promote awareness of Parkinson's disease
and to raise funds for research.

They will leave Carlsbad, Calif., on March 20 and will bike through eight states -- California, Arizona, New
Mexico, Texas, Louisiana, Mississippi, Alabama and Georgia, arriving in Brunswick, Ga., around April 30.

Bowen, a retired leatherworker, knows how important Parkinson's research is to the more than 1 million
Americans afflicted with the disease. He was diagnosed with Parkinson's disease 17 years ago.

"This isn't about me," Bowen said. "It's more about helping find a cure for Parkinson's and encouraging
those who have the disease that they can do things despite having the illness.
"This makes me realize that I can take on a challenge. If I can ride coast-to-coast with Parkinson's, they can
do the normal things in life. Life would be boring without challenges."

Bowen and Thomas will ship their bicycles to Indiana, where they will be picked up and shipped to
California. Bowen's 15-gear Trek touring bicycle is in the shop, being outfitted with new tires and having
worn parts replaced.

"I decided to have some repairs done now, rather than have to do them along the side of the road," he said.
Bowen said he has a lot of support from family and friends in coping with his illness. Many of them already
have made donations in support of the bike ride. Supporting Parkinson's research is as important to them
as it is to him, he said.

Parkinson's disease is a brain disorder with no known cause and no cure. It occurs when a specific group of
brain cells begin to malfunction and die. These cells produce a chemical called dopamine, a chemical
responsible for telling the body how and when to move.

When approximately 80 percent of the dopamine-producing cells are damaged, the symptoms of
Parkinson's disease appear. The key signs of Parkinson's are tremors or shaking, slowness of moving, rigidity or stiffness and difficulty
with balance.

"By the time you get your first tremor, you have already had Parkinson's for five years," Bowen said.
"Someone finally put the name on what you are feeling."

Parkinson's disease affects men and women in almost equal numbers, according to the National Parkinson
Foundation. It shows no social, ethnic, economic or geographic boundaries.

In the United States, it is estimated that 60,000 new cases are diagnosed each year, joining the 1.5 million Americans who already
have it. While the condition usually develops after age 65, 15 percent of those diagnosed are under 50.
There are a number of effective medicines that help ease the symptoms of Parkinson's disease. The
medicines most commonly used will attempt to either replace or mimic dopamine.

Several new medicines are being studied that could slow the progression. Many promise to improve the
lives of people with Parkinson's disease.

The Davis Phinney Foundation, based in Boulder, Colo., was established in 2004 by Davis Phinney, a
professional cyclist who was diagnosed with Parkinson's at age 40. Phinney was the first American to win a
stage of the Tour de France, the world's most popular cycling race.

The foundation is focused on promoting and funding innovative and progressive research into the benefits
of quality-of-life therapies on Parkinson's disease.

"There is no cure for Parkinson's, but there is plenty you can do about it," Bowen said. "First of all, stop
complaining as if you are the only person who has ever had it. Think about using your disability to make
others more comfortable instead of worrying about yourself."

Bowen and his wife, Beth Acri-Bowen, went skydiving for the experience of jumping out of an airplane. They
also have sailed the Caribbean, living off the reef and depending on what they catch for all their meals.
Bowen and Thomas have completed several "centuries," 100-mile bike rides, including one across parts of
Ohio and Pennsylvania.

The coast-to-coast ride will be his longest bicycle trip, Bowen said. The participants will camp out or stay in
schools, churches and an occasional motel.

"I feel fortunate to have the ability to do this," he said. "I'm sure there will be days when we don't seem to be
making progress and I will want to quit, but I expect to stick with it."
Bowen said his hope is that his participation in the bike ride will make others aware that time has a way of
erasing opportunities.

"Having Parkinson's makes you realize it's time to grab hold of your dream and do it before it gets out of
reach," he said.

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A NIGHT TO REMEMBER, FROM MY JOURNEY WITH PD

2009-01-17T09:31:00.000-08:00

I RECENTLY FOUND THE FOLLOWING FROM SANDWALK.BLOGSPOT.COM. IT WAS THRILLING TO BE A WITNESS TO MY WIFE'S BROTHER RECEIVING HIS NOBEL.HIS WORK CONTINUES AND HOPEFULLY A CURE FOR PD.

Nobel Laureates: Arvid Carlsson and Paul Greengard

The Nobel Prize in Physiology or Medicine 2000.

"for their discoveries concerning signal transduction in the nervous system"

Arvid Carlsson (1923 - ) and Paul Greengard (1953 - ) received the Nobel Prize in Physiology or Medicine for their work on identifying dopamine as a neurotransmitter. They also showed that L-dopa [Monday's Molecule #70], a precursor of dopamine, could relieve the symptoms of dopamine depletion and help control the symptoms of Parkinson's disease. They shared the prize that year with Eric R. Kandel.
The presentation speech was given by Professor Urban Ungerstedt of the Nobel Committee at Karolinska Institutet. (The date was, of course, December 10th as always. This is the anniversary of Alfred Nobel's death.)

Your Majesties, Your Royal Highnesses, Ladies and Gentlemen,

This year's Nobel Prize in Physiology or Medicine concerns the most complex structure in the universe that we know of - the human brain. It consists of 100 billion nerve cells, which is the same number of cells as the total number of human beings that have ever lived on this earth.

We talk about the "Internet revolution"; 35 million Internet users who communicate now and then - what is that compared to the nerve cells we all carry within ourselves! 100 billion nerve cells that communicate continuously.

It is this communication, "signal transduction in the nervous system," which is the subject of this year's Nobel Prize. A single nerve cell forms thousands of contact points, so-called synapses, with other nerve cells. In these synapses the nerve cells communicate by chemistry; one cell releases a transmitter, which reaches the other cell.

Professor Arvid Carlsson proved that dopamine is such a transmitter. The general belief was that dopamine was a precursor of other transmitters and of little functional importance. However, Professor Carlsson was able to show that dopamine existed in specific parts of the brain and concluded that it was a transmitter in its own right.

He then used a naturally occurring substance, reserpine, which empties the dopamine from the nerves, and found that the animals lost their ability to move. He realized that it must be possible to restore the dopamine levels with L-DOPA, a precursor of dopamine. In a conclusive, dramatic experiment he showed that the animals regained their ability to move when he gave them L-DOPA.

Reserpine had depleted dopamine and had given the animals the symptoms of Parkinson's disease, that is, rigidity and inability to move and react to stimuli in the environment. When the animals were given L-DOPA, dopamine was produced again in their brains. In this way the idea of treating Parkinson patients with L-DOPA was born. This enables millions of patients around the world to live a normal life.

Professor Paul Greengard showed what happens when dopamine and other similar transmitters stimulate a nerve cell. Receptors on the cell surface activate enzymes in the cell wall, which starts the production of second messengers. These messengers travel into the cell and activate a protein kinase, which starts to bind phosphate groups to other proteins, in this way altering their function. This leads, for example, to the opening of ion channels in the cell membrane and a change in the electrical activity of the cell.

Professor Greengard then showed that dopamine and other transmitters affect a central regulatory protein, which has been called DARPP-32. Like the conductor of an orchestra, it tells other proteins when and how to be activated.

This so-called "slow synaptic transmission" controls our movements and also those processes in the brain that elicit emotions or react to addictive drugs such as cocaine, amphetamine and heroin.

Professor Eric Kandel showed that transmitters of the same type as studied by Arvid Carlsson, via the protein kinases characterized by Paul Greengard, are involved in the most advanced functions of the nervous system such as the ability to form memories.

Imagine how difficult or impossible it must be to study how memory is formed in a human brain with 100 billion nerve cells. Eric Kandel, therefore, did something which is classical in all natural science: He chose to study a simpler model system, a sea slug, Aplysia, which has 20,000 nerve cells. He did it with the conviction that even primitive animals must learn in order to survive.

The sea slug has a withdrawal reflex protecting its gills. If they are touched repeatedly, they react less and less - just as human beings do when subjected to an unexpected touch. If, on the other hand, the touch is forceful the reflex is amplified and becomes stronger and stronger.

The habituation or amplification effect lasts only for a few minutes. One may say that the sea slug exhibits a short-term memory. If the forceful stimulus is repeated several times, the sensitization may remain for weeks, that is, the sea slug develops a long-term memory.

Professor Kandel was able to show that habituation to touching was due to changes in the synapse, the contact point between the nerve cells. During habituation less and less transmitter was released.

The forceful stimulus that formed the long-term memory worked in a completely different way. Second messengers activated protein kinases that entered the cell nucleus and started the production of new proteins. This, in turn, brought about a change in the form and function of the synapse. What we call memory is, thus, elicited by direct changes in the billion of synapses that form the contact points between the nerve cells.

I am convinced that you and I will remember this Nobel ceremony for many years. This is because of the dopamine which Arvid Carlsson discovered, enabling the brain to react to what we see and hear; the second messengers that Paul Greengard described, carrying the signals into the nerve cell; and the memory functions that Eric Kandel found to be due to changes in the very form and function of the synapses.

Dear Arvid Carlsson, Paul Greengard and Eric Kandel. Your discoveries concerning "signal transduction in the nervous system" have truly changed our understanding of brain function. From Arvid Carlsson's research we now know that Parkinson's disease is due to failure in synaptic release of dopamine. We know that we can substitute the lost function by a simple molecule, L-DOPA, which replenishes the emptied stores of dopamine and in this way, give millions of humans a better life.

We know from Paul Greengard's work how this is brought about. How second messengers activate protein kinases leading to changes in cellular reactions. We begin to see how phosphorylation plays a central part in the very orchestration of the different transmitter inputs to the nerve cells.

Finally, Eric Kandel's work has shown us how these transmitters, through second transmitters and protein phosphorylation, create short- and long-term memory, forming the very basis for our ability to exist and interact meaningfully in our world.

On behalf of the Nobel Assembly at Karolinska Institutet, I wish to convey our warmest congratulations and I ask you to step forward to receive the Nobel Prize from the hands of His Majesty the King.

[Photo Credits: The photo of Paul Greengard with his wife Ursala von Rydingsvard is from The New York Times. Greengard used his prize money to fund an annual $50,000 award to an outstanding female medical researcher.

PREVIEW OF PBS DOCUMENTARY ON PD

2009-01-09T11:06:00.000-08:00

FEBRUARY 3, 2009.....RESERVE THE DATE AND TIME TO WATCH THIS PBS SPECIAL SHOW. (CHECK LOCAL LISTINGS FOR TIME).

"SMELL THE ROSES"

2009-01-02T06:59:00.000-08:00

A man sat at a metro station in Washington
DC and started to play the violin; it was a cold December morning. He played
six Bach pieces for about 45 minutes. During that time, since it was rush
hour, it was calculated that a thousand of people went through the station,
most of them on their way to work.
Three minutes went by and a middle aged man
noticed there was musician playing. He slowed his pace and stopped for a few
seconds and then hurried up to meet his schedule.
A minute later, the violinist received his
first dollar tip: a woman threw the money in the till and without stopping
continued to walk.
A few minutes later, someone leaned against
the wall to listen to him, but the man looked at his watch and started to
walk again. Clearly he was late for work.
The one who paid the most attention was a 3
year old boy. His mother tagged him along, hurried but the kid stopped to
look at the violinist. Finally the mother pushed hard and the child
continued to walk turning his head all the time. This action was repeated by
several other children. All the parents, without exception, forced them to
move on.
In the 45 minutes the musician played, only
6 people stopped and stayed for a while. About 20 gave him money but
continued to walk their normal pace. He collected $32. When he finished
playing and silence took over, no one noticed it. No one applauded, nor was
there any recognition.
No one knew this but the violinist was
Joshua Bell, one of the best musicians in the world. He played one of the
most intricate pieces ever written with a violin worth 3.5 million dollars.
Two days before his playing in the subway,
Joshua Bell sold out at a theater in Boston and the seats average $100
This is a real story. Joshua Bell playing
incognito in the metro station was organized by the Washington Post as part
of a social experiment about perception, taste and priorities of people. The
outlines were: in a commonplace environment at an inappropriate hour: Do we
perceive beauty? Do we stop to appreciate it? Do we recognize the talent in
an unexpected context?
One of the possible conclusions from this
experience could be:
If we do not have a moment to stop and
listen to one of the best musicians in the world playing the best music ever
written, how many other things are we missing?
Wishing you a new year that brings
unexpected beauty from everyday life! Don't forget to "smell the roses"
every day!
Google: Joshua Bell subway...for detailed
account.

PATIENT'S CHECKLIST

2008-12-24T05:37:00.000-08:00

Recently found on PATIENTS LIKE ME website.

Developing an effective relationship with your physician

Use the checklist below to evaluate your relationship with your physician. If your doctor is not currently meeting your needs or expectations, talk with him or her about changes that could improve your level of satisfaction. You are a consumer of your health care, and you should work to ensure that you are receiving the quality of care you deserve.

____ Are you comfortable with your doctor? Does he or she make you feel at ease?

____ Does your doctor understand your personal priorities? Does he or she take them into consideration when making recommendations about your treatment?

____ Does your doctor listen to your concerns and take them seriously?

____ Does your doctor ask you about the impact of symptoms and side effects on your daily life?

____ Is your doctor respectful of your opinion and the opinion of your family caregiver? Does he or she see you and your family caregiver as equal partners in the management of your PD?

____ Does your doctor explain his or her recommendations in a way that is easy to understand?

____ Does he or she give you thorough instructions regarding medications or other treatment options?

____ Does your doctor recommend nondrug treatments in addition to medications (exercise, diet, attention to emotional well-being)?

____ Does your doctor inquire about aspects of your health that fall outside of his or her specialty? Does he or she talk to, or share files with, your other physicians?

____ Is your doctor or a member of his or her staff available to answer your questions or address your concerns between office visits?

____ Does your doctor arrive for your appointments in a timely manner? Does he or she allow enough time for a thorough examination and to answer your questions?

____ Does your doctor educate you about PD on an ongoing basis? Does he or she refer you to additional resources or support groups?

____ Does your doctor encourage you to get a second opinion or refer you to a specialist when appropriate?

____ Does your doctor stay up to date on research findings about PD and new treatment options?

____ Does he or she inform you about clinical trials in which you may be eligible to participate?

*Taken from Moving Forward printed by Azilect

"RIDING THE WAVES OF PD"

2008-12-20T03:45:00.000-08:00

"RIDING THE WAVES OF PD"
I came across this post title while visiting the Forum @ PATIENTS LIKE ME.
www.patientslikeme.com/
What a great way to describe the journey we find ourselves on. A much more positive feeling than THE ROLLERCOASTER RIDE OF PD.
If you're riding the waves you are trying to stay on your board and in control of the adventure.
If your'e on the rollercoaster, you are just on for the ride with all of the ups and downs and nothing to say or do about the experience.
RIDING THE WAVES...A BETTER WAY TO GO.

SEE THE DANCING BIRD AND SMILE

2008-12-19T04:35:00.000-08:00

YOU HAVE TO WATCH MY VIDEO BAR.
SMILE, LAUGH, ENJOY.
HAPPY DAYS

FREE MEDICINE PROGRAM....

2008-12-18T04:21:00.000-08:00

Bookmark this page and help spread the word:

Thanks to USA federal government incentives, pharmaceutical companies may provide free prescription medicines if:

You have no insurance
You have reached a gap in private or public prescription insurance coverage (like many Medicare beneficiaries do with Part D)
You simply don't have enough money to pay for your medications

Generally, if you earn less in a year than the levels shown below, you may qualify for some or all of the prescription drugs you need:

$39,200 for single people
$52,800 for couples
$80,000 for a family of four.

Most people have no idea that instead of paying the high prices at their pharmacy, they could be picking up their medicine for free or low cost at the same pharmacy, just by applying and being approved for free medicine. Being eligible and approved is easier than most people think. (And FreeMedicine is here to help you do just that.) Have your medication delivered to your home, local pharmacy or doctor's office, for FREE from special programs designed for people in the USA with incomes as high as $80,000.00.

Please apply if you:*

Are Uninsured
Under-Insured
Participate in Medicare Part D
Take medicine not covered by insurance
• Have high deductible co-pays
Don't go without your medicine just because you can't afford it. Apply online right here (the fastest way to get started) or call 1-573-996-3333 to request a free brochure and application mailed to you today.

A single application may provide for up to one year of medicine free of charge to eligible individuals and an individual may reapply as many times as needed.
*Other requirements may apply. Each drug has it's own eligibilty criteria.

2009----BETTER DAYS AHEAD

2008-12-16T00:33:00.001-08:00

WELCOME 2009--BETTER DAYS

2008-12-15T22:29:00.000-08:00

STRESS.....IS A MESS. TO BETTER DAYS

2008-12-11T00:59:00.000-08:00

STRESS IS A MESS.

It isn't always easy coping with chronic diseases, in fact it is sometimes damn hard.
Now adding a little extra stress....that's something no one needs. It is hard to understand how, just a little pinch of extra stress affects people with PD. It is hard to communicate this without sounding sorry for oneself.
There is no way to keep everyone at this time of year less stressful. It is worth a try,however to let people know one does not need that extra pinch without feeling guilty or with self-pity.
Straight talk is always helpful....that is if you have a friendly audience.
to Better Days.

PLM

2008-12-08T02:58:00.000-08:00

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

THE WHALE RESCUE

2008-12-02T10:03:00.000-08:00

The Whale

A female humpback whale had become entangled in a spider web of crab traps and lines.
She was weighted down by hundreds of pounds of traps that caused her to struggle to stay afloat
She also had hundreds of yards of line rope wrapped around her body, her tail, her torso, a
line tugging in her mouth.
A fisherman spotted her just east of the Faralon Islands (outside the Golden Gate ) and radioed
for help.
Within a few hours, the rescue team arrived and determined that she was so bad off, the only
way to save her was to dive in and untangle her -- a very dangerous proposition. One slap of
the tail could kill a rescuer.

They worked for hours with curved knives and eventually freed her.
When she was free, the divers say she swam in what seemed like joyous circles.
She then came back to each and every diver, one at a time, nudged them, and pushed gently,
thanking them.
Some said it was the most incredibly beautiful experience of their lives.

The guy who cut the rope out of her mouth says her eye was following him the
whole time, and he will never be the same.
May you, and all those you love, be so fortunate...
To be surrounded by people who will help you get untangled from the
things that are binding you.
And, may you always know the joy of giving and receiving gratitude.
I pass this on to you, my friend, in the same spirit.

PD...EARLY SIGNS

2008-12-01T02:23:00.000-08:00

EARLY SIGNS :

My wife and I were talking about all the experiences you have all revealed, and after all these years we found that I had early signs no one thought much about. I was diagnosed officially in 2000, I had signs of tremors and frozen feet in 1998(that I was aware of) and friends always asked, why is Howard limping ? Twenty -five or so years ago my wife says that I had a night twitch and I remember having inner vibrations that I couldn't control. I suppose it would be so wise to check all these seemingly innocent situations...but we fall into the trap of thinking (or not) that it is nothing, just a passing annoyance. In talking with others I come away with the feeling that when doctors are faced with questions relating to innocent signs, they do not give enough thought as to why,what are the possibilities here, let's keep a close eye on this. If one could only be more aware of their own body and functions, then one could help themselves and their doctors to monitor and diagnose at a much earlier stage of any malfunction or disease.If this was so, maybe the researchers would be a little closer to why and/or what can we do to prevent the subsequent onset----one never knows----do one?

UCBD....What is it?

2008-11-30T02:24:00.000-08:00

DOUBLE CLICK ABOVE TO ENLARGE THE IMAGE.
THIS RESEARCH PROJECT NEEDS YOUR ATTENTION AND HELP......
PLEASE CONTACT US FOR ALL YOU NEED TO KEEP PROGRESS ON THE FRONT BURNER. PB

THANKSGIVING

2008-11-28T12:12:00.000-08:00

SLOW PROGRESS.....THAT IS WHAT I AM THANKFUL FOR.

TURKEY DAY

2008-11-27T02:00:00.001-08:00

A SHAKY WORLD: CONTINUED, A NEW WEEK

2008-11-23T07:49:00.000-08:00

A new day begins.
A new week begins.
What turn of events will we see ?
Will we be thankful on this coming Thanksgiving Day?
One never knows these days.
One can only hope for the best.
One can try a little harder.
One can be more supportive.
One can be thankful for the positive things we have.
One can look to the future, which will be brighter.
One can look to January 20th, 2009, a new dawning.
One can look to keeping the humor alive.
One can look to a steady hand at the helm.
One can look to himself .

We do have the power within us to sustain and prosper.
Positive thinking and action is required to keep it all together. Those whom have had to deal with unexpected changes in their lives, know this.
A more than positive attitude is a prescription for us all---it works---with positive side effects---too numerous to list.
All this sounds so serious. We are living through scary times.
Get out and smell the roses, watch the seas, see the sunrise and sunset, life is sweet.

CLEAR ADVICE

2008-11-21T02:51:00.000-08:00

PARKINSON'S at HOME: PARKINSON'S at HOME, WE VOTED--DID YOU ?

CLEAR ADVICE

2008-11-21T02:35:00.000-08:00

"CLEAR ADVICE//PLEASE READ."

JUST ADDED THIS TO THE LINKS LIST ON THE RIGHT COLUMN.

A LITTLE HELP FOR THOSE ON THIS JOURNEY.

HOPE ON THE HORIZON-----TREMORS BLOG

2008-11-20T01:49:00.000-08:00

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.

TECHNORATI

2008-11-19T05:05:00.000-08:00

Technorati Profile

TREMORS-- "IMAGINE WHAT IT'S LIKE"

2008-11-18T04:19:00.000-08:00

We were visiting with friends this past Saturday. We did not have a chance to check out one of their most recent publications.
Good reviews, Put this on your reading list.

FROM THE UNIVERSITY OF HAWAII PRESS:A Literature and Medicine Anthology

Imagine What It’s Like: A Literature and Medicine Anthology, edited by Ruth Nadelhaft, with Victoria Bonebakker, grew out of Literature and Medicine: Humanities at the Heart of Health Care, a national award-winning reading and discussion program for health care professionals that, according to one participant, “renews the heart and soul of health care.” Started by the Maine Humanities Council in 1997, by the beginning of its second decade, Literature and Medicine has reached across the country, from Florida to Montana, Maine to Hawai‘i. Bringing together diverse groups of health care professionals in a variety of health care settings, Literature and Medicine discussions help participants deepen their communication and interpresonal skills while increasing their cultural awareness, empathy for patients, and job satisfaction.

May 2008 / ISBN 978-0-8248-3317-6 / $19.95 (PAPER)
A Literature and Medicine Anthology

MILES OF SMILES

2008-11-17T02:49:00.000-08:00

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.

VETERANS

2008-11-10T19:34:00.000-08:00

Tomorrow, November 11th is Veterans Day in the United States of America.
We should honor those whom have served, sacrificed and given their lives for our Nation.
The NEW OXFORD Dictionary defines Veteran:
veteran |ˈvetərən; ˈvetrən|
noun
a person who has had long experience in a particular field
• a person who has served in the military : a veteran of two world wars.
ORIGIN early 16th cent.: from French vétéran or Latin veteranus, from vetus ‘old.’

I AM A PERSON "WHO HAS HAD LONG EXPERIENCE IN A PARTICULAR FIELD"

I am a veteran, not just from the U.S.Army but also after eight years since being diagnosed with PD.
Sometimes being a veteran weighs heavy on your physche and sometimes it is as light as a feather.
You served and now you are being served, or are aware that time marches on which leads to progress.
I am a veteran who served but I am fortunate not to be making fast progress.

HAPPY VETERAN'S DAY.

WE VOTED AND HISTORY WAS MADE.

2008-11-05T03:55:00.000-08:00

2008-11-03T08:43:00.001-08:00

LUCKY, I GUESS.

2008-11-01T10:36:00.000-07:00

LUCKY, I GUESS. At least that's how I felt after that fearfull first dose of Sinemet and Sinemet CR. I did not seem to have all those side effects printed on the drug information sheet. It takes about twenty minutes to read and comprehend that list.
So far so good, I responded as my doctor hoped I would.
Just a little detour. I am so glad my wife's brother, Dr. Paul Greengard (Nobel Laureate-2000) was so successful in his work to discover the dopamine trail and all that goes with it. He's still on the case and hopefully his latest findings will help all who have PD.
Back to me, every day since that first doseage we have found comfort and control.
Some days are better than others.
I cannot stress how helpful it is to have the support of people close to you.
I'm LUCKY, I GUESS.

SIDE EFFECTS

2008-10-27T01:32:00.000-07:00

DID YOU EVER WONDER WHAT CAUSES THE STOCK MARKET'S VOLATILE MOVEMENTS?
THE WALL STREET JITTERS.<
ANYTHING CAN SET THEM OFF. THE WATER IS NOT HOT ENOUGH/ THE WATER IS TOO HOT/ THE WATER IS LUKE WARM. ANYTHING. THE SKY IS BLUE/ IT'S A CLOUDY DAY. ANYTHING.
NO SENSE TO HALF OF IT.
SIDE EFFECTS.<
DID YOU EVER READ THE LIST OF SIDE EFFECTS FOR THE MEDICATIONS YOU MIGHT TAKE?
ANYTHING(AND EVERYTHING). WHATEVER GIVES WALL STREET THE JITTERS AND THENSOME. IT IS ENOUGH TO PLANT THE FEAR OF GOD IN YOU.
SHOULD WE TRY IT/ SHOULD WE NOT?
TRY IT.
THEN YOU WAIT AND SEE. WHAT WILL HAPPEN, DID I JUST SEE THAT OR WAS IT A SIDE EFFECT. DID I JUST FEEL THAT OR WAS IT A SIDE EFFECT. I BETTER GO NOW (OR IS IT A SIDE EFFECT)?

BACK TO MY JOURNEY-"YOU HAVE PARKINSON"S"

2008-10-24T01:59:00.000-07:00

ENOUGH OF THE WORLD AROUND US. I NOW KNOW I HAVE PARKINSON'S. MY MIRACLE MAN TOLD ME IT WON'T BE THE THING THAT I WILL DIE OF. COMFORTING. NOW I KNOW I WILL NOT DIE OF PARKINSON'S. WHAT I DON'T KNOW AT THAT POINT IN TIME IS HOW PROGRESSIVE I WILL BE.
I HAD BEEN KNOWN TO BE RATHER PROGRESSIVE IN SOME OF MY PREVIOUS BUSINESS ACTIVITY. SOME PEOPLE WOULD SAY AGGRESSIVE, I SAY PROGRESSIVE.
HOW AGGRESSIVE WILL PARKINSON'S BE WITH ME??? AHH, THAT IS THE QUESTION.

WE LEFT CORNELL-WEIL HOSPITAL IN NEW YORK AND DROVE BACK HOME. A LONG DRIVE ARMED WITH THIS NEWLY DEFINED KNOWLEDGE AND CHALLENGE, ALONG WITH A STARTER PACK OF MEDICATION.
I CAN STILL REMEMBER ARRIVING HOME, MY WIFE, MY DEAREST FRIEND FIXING OUR DINNER AND ME---SITTING THERE A BIT STUNNED FROM MY NEW KNOWLEDGE (OR LACK OF IT) LOOKING AT MY STARTER PACK OF SINEMET. IF I TAKE THE FIRST ONE HOW WILL I REACT TO THIS INVASION OF FOREIGN SUBSTANCES INTO MY BODY.
I WILL ALSO BE GIVING IN TO MY DIAGNOSIS. I WILL BE SURRENDERING, WITHOUT A FIGHT.

I TOOK MY FIRST DOSE AFTER MUCH CONSIDERATION AND FEAR.

I AM NOT SURRENDERING---THE FIGHT HAD JUST BEGUN.
THE DINNER WAS DELICOUS, AS USUAL AND MY LINDA WAS MY ROCK.

A SHAKY WORLD: CONTINUED,

2008-10-10T04:22:00.000-07:00

IT IS FRIDAY THE 10TH OF OCTOBER, 2008.
THAT IS THE ONLY SURE THING I KNOW SO FAR.
I was still trying to start my next chapter of my journey, BUT, what is going on in this world??
IT'S ALL SHOOK UP.
AND I THOUGHT I HAD THE SHAKES.

I'M GOING TO SEE WHAT THE DAY BRINGS---HOPEFULLY SOME SENSE TO IT ALL.
STRAIN AND STRESS, NOT RECOMMENDED.

A SHAKY WORLD: NOT JUST ME

2008-10-07T02:54:00.001-07:00

I TALK ABOUT 'THE SHAKES' FROM TIME TO TIME, BUT WOW----WE ALL WATCHED THE WORLD SHAKE, THIS MONDAY THE SIXTH OF OCTOBER.
WHAT THE WORLD NEEDS NOW IS A LITTLE REQUIP, AMANTADINE, YOU KNOW AN AGONIST TO HELP THE MEDICINE DOO ITS' WORK.
A LITLE BIT GOES A LONG WAY.

PAUL NEWMAN

2008-10-01T15:20:00.000-07:00

I WAS THINKING OF MY NEXT CHAPTER WHEN I CAME ACROSS THE FOLLOWING:

PAUL NEWMAN
chaseinnewyork.blogspot.com

This cheered me up.

FEAR AND DISBELIEF

2008-10-01T05:25:00.000-07:00

THE NEXT STEP was to get some good advice. Having a future Nobel Laureate in the family is good.
We visited, discussed and were recommeded to one of the top Neurologists on the globe. My condition was defined as, "You have the shakes--that's what we call it in the business" Well now I have the "shakes".
I took my trembling self to see this newly found miracle man.
I found out I HAVE THE SHAKES.
No questions about it.

THE GREAT SHAKE-UP

2008-09-29T22:53:00.000-07:00

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.