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.
Sunday, November 1, 2009
Tuesday, September 8, 2009
Tuesday, July 7, 2009
Sunday, April 12, 2009
Wednesday, April 1, 2009
Wednesday, March 4, 2009
PARKINSON'S AWARENESS MONTH-APRIL
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.
©2009 Patriot-News
© 2009 PennLive.com All Rights Reserved.
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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.
©2009 Patriot-News
© 2009 PennLive.com All Rights Reserved.
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Saturday, January 17, 2009
A NIGHT TO REMEMBER, FROM MY JOURNEY WITH PD
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.
Friday, January 9, 2009
PREVIEW OF PBS DOCUMENTARY ON PD
FEBRUARY 3, 2009.....RESERVE THE DATE AND TIME TO WATCH THIS PBS SPECIAL SHOW. (CHECK LOCAL LISTINGS FOR TIME).
Friday, January 2, 2009
"SMELL THE ROSES"
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.
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.
Wednesday, December 24, 2008
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
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
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