PATIENT'S CHECKLIST

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"

"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

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

FREE MEDICINE PROGRAM....

Bookmark this page and help spread the word:

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• You have no insurance
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• $39,200 for single people
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2009----BETTER DAYS AHEAD

WELCOME 2009--BETTER DAYS

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

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

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

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

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?

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

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

TURKEY DAY

A SHAKY WORLD: CONTINUED, A NEW WEEK

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

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

CLEAR ADVICE

"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

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

Technorati Profile

TREMORS-- "IMAGINE WHAT IT'S LIKE"

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

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

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.

LUCKY, I GUESS.

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

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"

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,

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

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

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

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

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.