Parkinson’s Disease
While spoon-feeding him with one hand
she holds his hand with her other hand,
or rather lets it rest on top of his,
which is permanently clenched shut.
When he turns his head away, she reaches
around and puts in the spoonful blind.
He will not accept the next morsel
until he has completely chewed this one.
His bright squint tells her he finds
the shrimp she has just put in delicious.
Next to the voice and touch of those we love,
food may be our last pleasure on earth -
a man on death row takes his T-bone
in small bites and swishes each sip
of the jug wine around in his mouth,
tomorrow will be too late for them to jolt
this supper out of him. She strokes
his head very slowly, as if to cheer up
each separate discomfited hair sticking up
from its root in his stricken brain.
Standing behind him, she presses
her check to his, kisses his jowl,
and his eyes seem to stop seeing
and do nothing but emit light.
Could heaven be a time, after we are dead,
of remembering the knowledge
flesh had from flesh? The flesh
of his face is hard, perhaps
from years spent facing down others
until they fell back, and harder
from years of being himself faced down
and falling back in his turn, and harder still
from all the while frowning
and beaming and worrying and shouting
and probably letting go in rages.
His face softens into a kind
of quizzical wince, as if one
of the other animals were working at
getting the knack of the human smile.
When picking up a cookie he uses
both thumbtips to grip it
and push it against an index finger
to secure it so that he can lift it.
She takes him then to the bathroom,
where she lowers his pants and removes
the wet diaper and holds the spout of the bottle
to his old penis until he pisses all he can,
then puts on the fresh diaper and pulls up his pants.
When they come out, she is facing him,
walking backwards in front of him
and holding his hands, pulling him
when he stops, reminding him to step
when he forgets and starts to pitch forward.
She is leading her old father into the future
as far as they can go, and she is walking
him back into her childhood, where she stood
in bare feet on the toes of his shoes
and they foxtrotted on this same rug.
I watch them closely: she could be teaching him
the last steps that one day she may teach me.
At this moment, he glints and shines,
as if it will be only a small dislocation
for him to pass from this paradise into the next.
Saturday, May 30, 2009
Sunday, May 10, 2009
Small-scale research taking aim at disease
Small-scale research taking aim at disease
BY CAROLYNE PARK
Posted on Sunday, April 26, 2009
University of Arkansas at Little Rock researchers are examining Parkinson's disease at its most fundamental level in hopes of finding a way to stop the progression of the debilitating disease.
Chemistry professor Jerry Darsey and doctoral student Sushma Thotakura are leading the one-year study that's being paid for with the help of a grant from the Michael J. Fox Foundation for Parkinson's Research.
Darsey, who's been at UALR since 1990, said the research is focused on addressing the disease in its earliest stages.
"Most of the treatments for Parkinson's right now are looking at the symptoms, not the cause," Darsey said. "We're attacking it from a molecular point of view."
But the team isn't working in a traditional laboratory or spending hours bent over microscopes, cell samples or petri dishes.
Instead, they're using advanced computer programs that can generate models of molecules and predict how they would interact with proteins in the brain linked to the disease.
First characterized by an English doctor named James Parkinson in 1817, Parkinson's disease is a chronic and progressive brain disorder that affects about 1 in 100 people older than 60, according to the National Parkinson Foundation.
An estimated 1.5 million Americans have the disease, and 60,000 new cases are diagnosed annually. About 15 percent of cases are diagnosed in people younger than 50.
People with Parkinson's can have a variety of symptoms, including uncontrollable shaking of a hand or limb, stiffness, slowed movement, muffled speech, difficulty with balance, depression and limited facial expression.
While there's still a lot to learn about Parkinson's, scientists know there's a strong link to genetics, Darsey said. Something in a person's genetic code causes errors in a protein called alpha-synuclein, causing it to become warped.
The malformed proteins gather together, forming abnormal clumps in a part of the brain called the substantia nigra, which plays an important role in controlling body movement.
The clumps - called Lewy bodies - block some of the brain's nerve cells, also called neurons, causing them to die or become damaged.
"Over time this prevents the neurons from producing the molecules they need to do their job," Darsey said.
That job is to generate dopamine, a chemical that allows communication between the substantia nigra and neurons higher in the brain. If enough neurons are damaged, a person's motor functions are affected and he develops the symptoms of Parkinson's disease.
Through their research, Darsey and Thotakura hope to find a molecule that will attach to the alpha-synuclein protein and either prevent it from becoming malformed or revert it back to a normal shape after it's been malformed.
If scientists can find a molecule to do one of those two things, they can prevent the proteins from damaging neurons in the brain and thus stop progression of the disease.
"Once a brain cell dies, there's no getting them back," Darsey said.
MODELING MOLECULES
While he specializes in molecular modeling and has worked in biomedical research before, Darsey said this is his first time working with Parkinson's disease.
He and Thotakura will use three computer programs for the project. Those programs will allow them to use what they know about existing molecules to generate models of new molecules that no one's ever built before.
They will then be able to use those models to predict how the molecules would interact with alpha-synuclein proteins in the brain.
Using computers, they can run tests on hundreds or thousands of molecules in a fraction of the time it would take to build the molecules in a laboratory, Darsey said.
"It takes months or years to synthesize a molecule," Darsey said. "We can do it as fast as we can run the program."
But they face several challenges in finding just the right type of molecule for the job, said Jon Wilkes, research chemist at the National Center for Toxicological Research in Jefferson, near Pine Bluff. Wilkes is an adviser on the UALR project, along with Dan Buzatu, a fellow research chemist at the center.
The first challenge is finding molecules of the right shape or structure to fit into receptors in the alpha-synuclein protein. They'll then have to study how each potential molecule would interact or bond with the protein.
If they find ones that have one of the two desired effects - to either prevent or reverse the protein's malformation - they have a third obstacle, Wilkes said.
The molecules must be able to pass through what is known as the "blood-brain barrier," a natural defense system that prevents certain chemicals and other molecules in the blood from passing into brain tissue.
Even a molecule able to revert the protein's malformation won't do any good for Parkinson's patients if the brain rejects it, Wilkes said.
If they find molecules that meet all the criteria, those should then be made and tested by pharmaceutical companies as potential treatments for Parkinson's disease, Wilkes said.
THE GRANT
The Michael J. Fox Foundation is providing a one-year $75,000 grant through its Research Rapid Response Innovation Awards program for Darsey and Thotakura to do their work. UALR is providing $25,000 more in funding and in-kind support.
Since it was founded in late 2000, the foundation has provided more than $142 million for Parkinson's research around the globe.
The foundation started the Rapid Response program in 2007 to provide seed money for scientists to start research, said Kirsten Carlson, the foundation's associate director of research programs.
"It operates on a rolling deadline, so if somebody has a great idea at any time during the year they have a mechanism to apply for funding from us," she said. "The focus is really on high risk but potentially high reward projects with the potential for significant impact in understanding of the disease or treatment for Parkinson's."
Todd Sherer, the foundation's vice president of research, said, "The idea is to allow the scientist, while that idea is fresh and exciting in their mind, to get some real-time support."
The grants are no more than $75,000 for one year. After a year, if the research is promising enough, the foundation will consider further funding.
One such project by researchers at Northwestern University in Evanston, Ill., studied whether a common high blood pressure medication also had the ability to protect neurons in the brain.
The Rapid Response grant allowed researchers to test their hypothesis in the laboratory. Positive results there led to an additional $2 million grant from the foundation, which is allowing them to test the drug on Parkinson's patients.
But even projects that don't lead to more research are valuable in furthering overall knowledge of the disease, Sherer said.
"It's OK for us if some of them end up testing their hypothesis and it doesn't pan out but it got tested in a rigorous way," he said. "We see that as being successful."
Carlson said the foundation has funded about 30 projects a year through its Rapid Response program, and only a handful of those go on to get additional funding.
Darsey and Thotakura's grant funding started in January and ends at the end of the year.
This winter, they'll present the results of their study at the Michael J. Fox Foundation in New York. Depending on what they find, they may apply for additional funding at that time.
As with all Parkinson's research, it's about taking little steps toward finding better treatments and ultimately a cure, Darsey said.
"We're making a lot of progress, but there's still a lot of progress to be made," he said.
BY CAROLYNE PARK
Posted on Sunday, April 26, 2009
University of Arkansas at Little Rock researchers are examining Parkinson's disease at its most fundamental level in hopes of finding a way to stop the progression of the debilitating disease.
Chemistry professor Jerry Darsey and doctoral student Sushma Thotakura are leading the one-year study that's being paid for with the help of a grant from the Michael J. Fox Foundation for Parkinson's Research.
Darsey, who's been at UALR since 1990, said the research is focused on addressing the disease in its earliest stages.
"Most of the treatments for Parkinson's right now are looking at the symptoms, not the cause," Darsey said. "We're attacking it from a molecular point of view."
But the team isn't working in a traditional laboratory or spending hours bent over microscopes, cell samples or petri dishes.
Instead, they're using advanced computer programs that can generate models of molecules and predict how they would interact with proteins in the brain linked to the disease.
First characterized by an English doctor named James Parkinson in 1817, Parkinson's disease is a chronic and progressive brain disorder that affects about 1 in 100 people older than 60, according to the National Parkinson Foundation.
An estimated 1.5 million Americans have the disease, and 60,000 new cases are diagnosed annually. About 15 percent of cases are diagnosed in people younger than 50.
People with Parkinson's can have a variety of symptoms, including uncontrollable shaking of a hand or limb, stiffness, slowed movement, muffled speech, difficulty with balance, depression and limited facial expression.
While there's still a lot to learn about Parkinson's, scientists know there's a strong link to genetics, Darsey said. Something in a person's genetic code causes errors in a protein called alpha-synuclein, causing it to become warped.
The malformed proteins gather together, forming abnormal clumps in a part of the brain called the substantia nigra, which plays an important role in controlling body movement.
The clumps - called Lewy bodies - block some of the brain's nerve cells, also called neurons, causing them to die or become damaged.
"Over time this prevents the neurons from producing the molecules they need to do their job," Darsey said.
That job is to generate dopamine, a chemical that allows communication between the substantia nigra and neurons higher in the brain. If enough neurons are damaged, a person's motor functions are affected and he develops the symptoms of Parkinson's disease.
Through their research, Darsey and Thotakura hope to find a molecule that will attach to the alpha-synuclein protein and either prevent it from becoming malformed or revert it back to a normal shape after it's been malformed.
If scientists can find a molecule to do one of those two things, they can prevent the proteins from damaging neurons in the brain and thus stop progression of the disease.
"Once a brain cell dies, there's no getting them back," Darsey said.
MODELING MOLECULES
While he specializes in molecular modeling and has worked in biomedical research before, Darsey said this is his first time working with Parkinson's disease.
He and Thotakura will use three computer programs for the project. Those programs will allow them to use what they know about existing molecules to generate models of new molecules that no one's ever built before.
They will then be able to use those models to predict how the molecules would interact with alpha-synuclein proteins in the brain.
Using computers, they can run tests on hundreds or thousands of molecules in a fraction of the time it would take to build the molecules in a laboratory, Darsey said.
"It takes months or years to synthesize a molecule," Darsey said. "We can do it as fast as we can run the program."
But they face several challenges in finding just the right type of molecule for the job, said Jon Wilkes, research chemist at the National Center for Toxicological Research in Jefferson, near Pine Bluff. Wilkes is an adviser on the UALR project, along with Dan Buzatu, a fellow research chemist at the center.
The first challenge is finding molecules of the right shape or structure to fit into receptors in the alpha-synuclein protein. They'll then have to study how each potential molecule would interact or bond with the protein.
If they find ones that have one of the two desired effects - to either prevent or reverse the protein's malformation - they have a third obstacle, Wilkes said.
The molecules must be able to pass through what is known as the "blood-brain barrier," a natural defense system that prevents certain chemicals and other molecules in the blood from passing into brain tissue.
Even a molecule able to revert the protein's malformation won't do any good for Parkinson's patients if the brain rejects it, Wilkes said.
If they find molecules that meet all the criteria, those should then be made and tested by pharmaceutical companies as potential treatments for Parkinson's disease, Wilkes said.
THE GRANT
The Michael J. Fox Foundation is providing a one-year $75,000 grant through its Research Rapid Response Innovation Awards program for Darsey and Thotakura to do their work. UALR is providing $25,000 more in funding and in-kind support.
Since it was founded in late 2000, the foundation has provided more than $142 million for Parkinson's research around the globe.
The foundation started the Rapid Response program in 2007 to provide seed money for scientists to start research, said Kirsten Carlson, the foundation's associate director of research programs.
"It operates on a rolling deadline, so if somebody has a great idea at any time during the year they have a mechanism to apply for funding from us," she said. "The focus is really on high risk but potentially high reward projects with the potential for significant impact in understanding of the disease or treatment for Parkinson's."
Todd Sherer, the foundation's vice president of research, said, "The idea is to allow the scientist, while that idea is fresh and exciting in their mind, to get some real-time support."
The grants are no more than $75,000 for one year. After a year, if the research is promising enough, the foundation will consider further funding.
One such project by researchers at Northwestern University in Evanston, Ill., studied whether a common high blood pressure medication also had the ability to protect neurons in the brain.
The Rapid Response grant allowed researchers to test their hypothesis in the laboratory. Positive results there led to an additional $2 million grant from the foundation, which is allowing them to test the drug on Parkinson's patients.
But even projects that don't lead to more research are valuable in furthering overall knowledge of the disease, Sherer said.
"It's OK for us if some of them end up testing their hypothesis and it doesn't pan out but it got tested in a rigorous way," he said. "We see that as being successful."
Carlson said the foundation has funded about 30 projects a year through its Rapid Response program, and only a handful of those go on to get additional funding.
Darsey and Thotakura's grant funding started in January and ends at the end of the year.
This winter, they'll present the results of their study at the Michael J. Fox Foundation in New York. Depending on what they find, they may apply for additional funding at that time.
As with all Parkinson's research, it's about taking little steps toward finding better treatments and ultimately a cure, Darsey said.
"We're making a lot of progress, but there's still a lot of progress to be made," he said.
Saturday, May 2, 2009
Take care, caregivers
Sunday April 19, 2009
Take care, caregivers
By Lee Tse Ling
Caregivers should not be ignored in the treatment of Parkinson’s disease.
IN the National Parkinson Foundation Inc’s Parkinson Disease: Caring and Coping, Chaplain Chuck Meyer of St David’s Medical Center in Austin, Texas, the US, proposes a different way of looking at disease.
Conventionally, we liken managing disease to fighting a war, using phrases like “bringing in the troops” to “do battle” with drugs described as “magic bullets”. Even patients whose “battles” are over are considered “at peace.”
This is a very motivational approach when the war is short, or acute, and where there is still a chance the tide will turn in favour of the diseased. But what happens when the war is long and drawn out, where the disease is chronic like Parkinson’s, and the inevitable outcome death? Within a warlike context, any setback, whether large or small, can only be seen as defeat and failure.
This constant win-lose scenario can be very demoralising for both patients and their caregivers. So Meyer suggests looking at managing diseases like Parkinson’s as a collaboration or group project instead. One that patient, his caregiver(s), and healthcare and support workers can develop together to achieve “goals of comfort, dignity, and healing life-styles.”
Managing expectations
In this group project strategy, it is equally important to achieve the comfort, dignity and healing of the caregiver as that of the patient. This is because the person with Parkinson’s (PWP) will most likely have his expectations managed by his specialists (neurologists, nutritionists, psychiatrists, physiotherapists), but his caregiver may not.
In caring for their PWP, it is common for caregivers to feel:
·Inadequate and guilty for not being able to do more
·Frustrated, angry and worn out when faced with setbacks or the negative attitude of their PWP (who may be struggling with guilt, frustration and depression of his own)
·Shocked and horrified about having thoughts of leaving their PWP (especially if they are their spouses) or “wanting it all to end”
StarTwo entertainment editor Ann Marie Chandy for example, whose late mother Sosamah (Susie) Chandy was a PWP, often wrestled with feelings of guilt and failure while caring for her with her three sisters.
“We were always asking her to do more than she was able to. She said her physiotherapist never scolded her for anything, but we always did,” says Ann Marie. For example, when Susie was still able to walk, she would do so with her head bent painfully down due to muscle stiffness. Her children would tell her to look up so she could see where she was going and not bump into things. But Susie would be unable to straighten her neck.
The “scolding” came from concern that Susie would fall and hurt herself. Highly motivated and independent, Susie would insist on getting up and about – to go for walks outside, to attend church. But as her Parkinson’s progressed, she fell more often, despite the presence of her daughters, a maid and numerous walking aids (“a walker with wheels, a walker without wheels, a stick, a helmet...”).
Looking back, Ann Marie feels there are many things they would have done differently. She also feels that caregivers in Malaysia strongly need more support and information on how to care for their PWPs while caring for themselves too.
Caregivers need care too
It is normal for caregivers to feel lost and uncared for while providing so much care for their PWPs.
The first thing caregivers need to accept in order to have a positive relationship with their PWPs is they cannot heal them physically. Their PWPs will not be cured by care and attention, as there is currently no cure for Parkinson’s disease, and the severity of the condition will worsen over time despite their best efforts.
If you are a caregiver, don’t feel demoralised about what you cannot change. Focus instead on what you can by providing physical comfort, loving support, stimulation, and emotional healing.
Secondly, it is important for caregivers to schedule “me” time in which they can have a life away outside Parkinson’s and de-stress, eg by spending time on a hobby or going out with friends, and to not be too hard on themselves.
Thirdly, it is ok for caregivers to need – and ask for – support too. This can be as simple as having a friendly chat or “unloading” session with someone close when you’re down, or as profound as setting up your own local support group amongst other PWPs and caregivers you know in your area.
Find out more
Most of the information on coping with Parkinson’s disease available locally is patient-centric. Listed below are just some of the useful resources available online written with caregivers in mind.
For gentle encouragement on coping as a caregiver, visit the Michael J. Fox Foundation for Parkinson’s Disease Research at www.michaeljfox.org/living.cfm. Click on “For Patients and Caregivers” then click on “Guide for Caregivers” on the left navigation bar.
For a free e-copy of Parkinson’s Disease: Caring and Coping, visit www.parkinson.org. Click on “Publications” at the top navigation bar, and look under “Education Manuals” for “Caring and Coping”. This is a thorough guide for caregivers and PWPs on how to manage expectations, develop disease management action plans, sort out legal matters (finances, property, business), and living tips.
For more practical living tips with sections titled Especially for carepartners and lists of special equipment for PWPs, follow the same steps as for Caring and Coping and click instead on “Activities of Daily Living”.
For formal support, general information, inspiring true life stories and to get in contact with other PWPs and caregivers, contact the:
·Malaysian Parkinson’s Disease Association in Happy Garden, KL (03-7980 6685; www.mdpa.org.my)
·Negeri Sembilan Parkinson’s Association in Seremban (06-763 6275 / 06-764 4177; www.nsmps-parkinson.org)
Take care, caregivers
By Lee Tse Ling
Caregivers should not be ignored in the treatment of Parkinson’s disease.
IN the National Parkinson Foundation Inc’s Parkinson Disease: Caring and Coping, Chaplain Chuck Meyer of St David’s Medical Center in Austin, Texas, the US, proposes a different way of looking at disease.
Conventionally, we liken managing disease to fighting a war, using phrases like “bringing in the troops” to “do battle” with drugs described as “magic bullets”. Even patients whose “battles” are over are considered “at peace.”
This is a very motivational approach when the war is short, or acute, and where there is still a chance the tide will turn in favour of the diseased. But what happens when the war is long and drawn out, where the disease is chronic like Parkinson’s, and the inevitable outcome death? Within a warlike context, any setback, whether large or small, can only be seen as defeat and failure.
This constant win-lose scenario can be very demoralising for both patients and their caregivers. So Meyer suggests looking at managing diseases like Parkinson’s as a collaboration or group project instead. One that patient, his caregiver(s), and healthcare and support workers can develop together to achieve “goals of comfort, dignity, and healing life-styles.”
Managing expectations
In this group project strategy, it is equally important to achieve the comfort, dignity and healing of the caregiver as that of the patient. This is because the person with Parkinson’s (PWP) will most likely have his expectations managed by his specialists (neurologists, nutritionists, psychiatrists, physiotherapists), but his caregiver may not.
In caring for their PWP, it is common for caregivers to feel:
·Inadequate and guilty for not being able to do more
·Frustrated, angry and worn out when faced with setbacks or the negative attitude of their PWP (who may be struggling with guilt, frustration and depression of his own)
·Shocked and horrified about having thoughts of leaving their PWP (especially if they are their spouses) or “wanting it all to end”
StarTwo entertainment editor Ann Marie Chandy for example, whose late mother Sosamah (Susie) Chandy was a PWP, often wrestled with feelings of guilt and failure while caring for her with her three sisters.
“We were always asking her to do more than she was able to. She said her physiotherapist never scolded her for anything, but we always did,” says Ann Marie. For example, when Susie was still able to walk, she would do so with her head bent painfully down due to muscle stiffness. Her children would tell her to look up so she could see where she was going and not bump into things. But Susie would be unable to straighten her neck.
The “scolding” came from concern that Susie would fall and hurt herself. Highly motivated and independent, Susie would insist on getting up and about – to go for walks outside, to attend church. But as her Parkinson’s progressed, she fell more often, despite the presence of her daughters, a maid and numerous walking aids (“a walker with wheels, a walker without wheels, a stick, a helmet...”).
Looking back, Ann Marie feels there are many things they would have done differently. She also feels that caregivers in Malaysia strongly need more support and information on how to care for their PWPs while caring for themselves too.
Caregivers need care too
It is normal for caregivers to feel lost and uncared for while providing so much care for their PWPs.
The first thing caregivers need to accept in order to have a positive relationship with their PWPs is they cannot heal them physically. Their PWPs will not be cured by care and attention, as there is currently no cure for Parkinson’s disease, and the severity of the condition will worsen over time despite their best efforts.
If you are a caregiver, don’t feel demoralised about what you cannot change. Focus instead on what you can by providing physical comfort, loving support, stimulation, and emotional healing.
Secondly, it is important for caregivers to schedule “me” time in which they can have a life away outside Parkinson’s and de-stress, eg by spending time on a hobby or going out with friends, and to not be too hard on themselves.
Thirdly, it is ok for caregivers to need – and ask for – support too. This can be as simple as having a friendly chat or “unloading” session with someone close when you’re down, or as profound as setting up your own local support group amongst other PWPs and caregivers you know in your area.
Find out more
Most of the information on coping with Parkinson’s disease available locally is patient-centric. Listed below are just some of the useful resources available online written with caregivers in mind.
For gentle encouragement on coping as a caregiver, visit the Michael J. Fox Foundation for Parkinson’s Disease Research at www.michaeljfox.org/living.cfm. Click on “For Patients and Caregivers” then click on “Guide for Caregivers” on the left navigation bar.
For a free e-copy of Parkinson’s Disease: Caring and Coping, visit www.parkinson.org. Click on “Publications” at the top navigation bar, and look under “Education Manuals” for “Caring and Coping”. This is a thorough guide for caregivers and PWPs on how to manage expectations, develop disease management action plans, sort out legal matters (finances, property, business), and living tips.
For more practical living tips with sections titled Especially for carepartners and lists of special equipment for PWPs, follow the same steps as for Caring and Coping and click instead on “Activities of Daily Living”.
For formal support, general information, inspiring true life stories and to get in contact with other PWPs and caregivers, contact the:
·Malaysian Parkinson’s Disease Association in Happy Garden, KL (03-7980 6685; www.mdpa.org.my)
·Negeri Sembilan Parkinson’s Association in Seremban (06-763 6275 / 06-764 4177; www.nsmps-parkinson.org)
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