Parkinson's disease is a neurodegenerative illness that can have devastating effects on motor skills, including walking. A new study found that arm-swing asymmetry while walking may be one of the first signs of the disease.
In this small study, researchers from University of North Carolina at Chapel Hill and Pennsylvania State University did a gait analysis among 12 older people with early stage Parkinson's disease, and eight people without the disease, who served as a control group. Before gait analysis tests, those in the Parkinson's group tapered off their Parkinson's medication so test results wouldn’t be swayed.
Each participant had the movement of their arms, pelvis and lower extremities analyzed via a 3-D motion capture system as they walked three ways: at a normal gait, at a fast gait and on their heels, the last to minimize push-off.
The Parkinson's group showed more arm-swing asymmetry than the control group in the normal and fast walking variations. But trunk rotation was basically the same for both groups, showing that it didn't factor into the arm-swing asymmetry. Arm-swing magnitude was the same for both groups as well.
"Our data suggests that this could be a very useful tool for the early detection of Parkinson's," Xuemei Huang, associate professor of neurology at Pennsylvania State Hershey College of Medicine, said in a news release. Huang, the study's co-author, added: "There are wide scale efforts to find drugs that slow cell death. When they are found, they could be used in conjunction with this technique to arrest or perhaps cure the disease because they could be given before great damage has occurred."
Saturday, December 12, 2009
Parkinson's goes Big
The LSVT encourages a person with Parkinson's disease to really swing the arms, rock the heels and take large steps. LSVT also concentrates on the everyday activities important to the patients and for a golfer that meant working on his golf swing.
“The first thing we always focus on is doing everything really big,” Layhew said. “Then he gets used to it when he’s out in public.”
Parkinson disease typically causes tremors, slow movement, rigidity of limbs and poor balance. The disease can also affect speech and posture.
Speech and language pathologist Christine Garretson said many people with Parkinson disease initially aren’t aware of their condition until they learn about it from their spouses.
“One of the characteristics of Parkinson is the perception of how they sound,” Garretson said. “They think their spouse might need a hearing aid. It’s very common for them to think it’s their environment.”
She uses LSVT Loud to use those same principles of going big to get people with Parkinson to learn how to modulate their voices while speaking. The program begins with an “ahh” sound and then builds into homework that could include leaving voice messages or speaking to the receptionist.
“We get them to be intense and loud,” she said. “It’s bombarding them with being big and loud. We measure duration and level and then we adjust the pitch.”
The programs require a four-week commitment where a patient must attend four days a week during that month. He then performs the same exercises at home to get two sessions per day. Both LSVT programs include additional homework exercises.
“It’s retraining the brain,” Garretson said. “Voice problems affect the vast majority. Speech is what we do; it’s what makes us human — that ability to communicate.”
LSVT Loud also addresses swallowing problems frequently affecting Parkinson patients. Garretson said the exercises can help reduce the risk of choking and minimize embarrassment.
Sometimes a person with Parkinson makes it difficult to get in and out of his chair and cut his food so going out to dinner in public may be difficult aside from embarrasing and painful.
LSVT Big has conquered some of those problems.
LSVT Loud has been used for 15 years and many of the same principles are used for LSVT Big.
“LSVT is a great therapy for patients who need to improve their voice volume,” said Dr. Michael S. Okun, national medical director of the National Parkinson Foundation. “To make this therapy effective however, patients need to actively participate in many initial sessions and then in regular booster sessions.”
LSVT Big and LSVT Loud require regular exercise at home following the conclusion of the initial four-week sessions. During that time, one will continue tracking a patient's physical mobility, strength and balance during his booster session.
The improvements over the four weeks are enough to convince anyone to continue the exercises.
Both these exercises make a person with Parkinson's disease more confident in even simple activities like cutting his food and even getting out of his chair.
“The first thing we always focus on is doing everything really big,” Layhew said. “Then he gets used to it when he’s out in public.”
Parkinson disease typically causes tremors, slow movement, rigidity of limbs and poor balance. The disease can also affect speech and posture.
Speech and language pathologist Christine Garretson said many people with Parkinson disease initially aren’t aware of their condition until they learn about it from their spouses.
“One of the characteristics of Parkinson is the perception of how they sound,” Garretson said. “They think their spouse might need a hearing aid. It’s very common for them to think it’s their environment.”
She uses LSVT Loud to use those same principles of going big to get people with Parkinson to learn how to modulate their voices while speaking. The program begins with an “ahh” sound and then builds into homework that could include leaving voice messages or speaking to the receptionist.
“We get them to be intense and loud,” she said. “It’s bombarding them with being big and loud. We measure duration and level and then we adjust the pitch.”
The programs require a four-week commitment where a patient must attend four days a week during that month. He then performs the same exercises at home to get two sessions per day. Both LSVT programs include additional homework exercises.
“It’s retraining the brain,” Garretson said. “Voice problems affect the vast majority. Speech is what we do; it’s what makes us human — that ability to communicate.”
LSVT Loud also addresses swallowing problems frequently affecting Parkinson patients. Garretson said the exercises can help reduce the risk of choking and minimize embarrassment.
Sometimes a person with Parkinson makes it difficult to get in and out of his chair and cut his food so going out to dinner in public may be difficult aside from embarrasing and painful.
LSVT Big has conquered some of those problems.
LSVT Loud has been used for 15 years and many of the same principles are used for LSVT Big.
“LSVT is a great therapy for patients who need to improve their voice volume,” said Dr. Michael S. Okun, national medical director of the National Parkinson Foundation. “To make this therapy effective however, patients need to actively participate in many initial sessions and then in regular booster sessions.”
LSVT Big and LSVT Loud require regular exercise at home following the conclusion of the initial four-week sessions. During that time, one will continue tracking a patient's physical mobility, strength and balance during his booster session.
The improvements over the four weeks are enough to convince anyone to continue the exercises.
Both these exercises make a person with Parkinson's disease more confident in even simple activities like cutting his food and even getting out of his chair.
Stomach Hormone Can Boost Resistance To Or Slow Down Parkinson's
By: Catharine Paddock, PhD
US researchers report finding that ghrelin, a hormone produced in the stomach that regulates appetite and how the body deposits fat, may be used to boost resistance to or slow the development of Parkinson's disease.
The study is the work of Dr Tamas Horvath, chair and professor of comparative medicine and professor of neurobiology and obstetrics and gynecology at the Yale University School of Medicine, New Haven, Connecticut, and colleagues and was published earlier this month in The Journal of Neuroscience.
Parkinson's disease is a neurodegenerative disorder where dopamine neurons in an area of the midbrain known as the substantia nigra, which is responsible for dopamine production, start to die off.
As less dopamine is produced, the symptoms become more severe, so that eventually people with the disease have difficulty walking, have restricted and delayed movements, get tremors in their head and limbs, lose their appetite, can't eat properly, and have periods of immobility or "freezing".
We already know that ghrelin targets the hypothalamus and affects appetite, food intake and how the body deposits fat. The authors wrote that ghrelin receptors at sites outside of the hypothalamus also "promote circuit activity associated with learning and memory, and reward seeking behavior". And recent human studies have shown that body mass index (BMI), stored fat and diabetes are linked to Parkinson's disease.
In this study, Horvath and colleagues discovered that ghrelin also protects the neurons that make dopamine.
"We also found that, in addition to its influence on appetite, ghrelin is responsible for direct activation of the brain's dopamine cells," said Horvath. He explained that because the hormone is made in the stomach, it circulates normally in the bloodstream, "so it could easily be used to boost resistance to Parkinson's or it could be used to slow the development of the disease".
For the study, which was supported by the Michael J Fox Foundation for Parkinson's Research, Horvath and colleagues gave one group of mice extra ghrelin, and while another group were genetically engineered to lack the hormone and its receptor.
When compared to a group of control mice, the mice that had impaired ghrelin action in the brain had more dopamine loss.
The authors explained that the mice that were given extra ghrelin lost fewer substantia nigra pars compacta dopamine cells and showed "restricted striatal dopamine loss", while the mice that were genetically engineered to lack the hormone and its receptors lost more substantia nigra pars compacta dopamine cells and showed "lowered striatal dopamine levels". The effect in the genetically engineered mice was reversed when they switched the ghrelin receptor on.
They concluded that their study supports the idea that ghrelin could be a new therapeutic strategy to fight neurodegeneration, loss of appetite and body weight linked with Parkinson's disease.
Horvath said they could see these results being applicable to humans because the ghrelin system is preserved through various species.
The researchers are now planning to find out how ghrelin levels differ between healthy people and people with Parkinsons disease, and whether changes in ghrelin levels might serve as a biomarker of disease susceptibility and development.
US researchers report finding that ghrelin, a hormone produced in the stomach that regulates appetite and how the body deposits fat, may be used to boost resistance to or slow the development of Parkinson's disease.
The study is the work of Dr Tamas Horvath, chair and professor of comparative medicine and professor of neurobiology and obstetrics and gynecology at the Yale University School of Medicine, New Haven, Connecticut, and colleagues and was published earlier this month in The Journal of Neuroscience.
Parkinson's disease is a neurodegenerative disorder where dopamine neurons in an area of the midbrain known as the substantia nigra, which is responsible for dopamine production, start to die off.
As less dopamine is produced, the symptoms become more severe, so that eventually people with the disease have difficulty walking, have restricted and delayed movements, get tremors in their head and limbs, lose their appetite, can't eat properly, and have periods of immobility or "freezing".
We already know that ghrelin targets the hypothalamus and affects appetite, food intake and how the body deposits fat. The authors wrote that ghrelin receptors at sites outside of the hypothalamus also "promote circuit activity associated with learning and memory, and reward seeking behavior". And recent human studies have shown that body mass index (BMI), stored fat and diabetes are linked to Parkinson's disease.
In this study, Horvath and colleagues discovered that ghrelin also protects the neurons that make dopamine.
"We also found that, in addition to its influence on appetite, ghrelin is responsible for direct activation of the brain's dopamine cells," said Horvath. He explained that because the hormone is made in the stomach, it circulates normally in the bloodstream, "so it could easily be used to boost resistance to Parkinson's or it could be used to slow the development of the disease".
For the study, which was supported by the Michael J Fox Foundation for Parkinson's Research, Horvath and colleagues gave one group of mice extra ghrelin, and while another group were genetically engineered to lack the hormone and its receptor.
When compared to a group of control mice, the mice that had impaired ghrelin action in the brain had more dopamine loss.
The authors explained that the mice that were given extra ghrelin lost fewer substantia nigra pars compacta dopamine cells and showed "restricted striatal dopamine loss", while the mice that were genetically engineered to lack the hormone and its receptors lost more substantia nigra pars compacta dopamine cells and showed "lowered striatal dopamine levels". The effect in the genetically engineered mice was reversed when they switched the ghrelin receptor on.
They concluded that their study supports the idea that ghrelin could be a new therapeutic strategy to fight neurodegeneration, loss of appetite and body weight linked with Parkinson's disease.
Horvath said they could see these results being applicable to humans because the ghrelin system is preserved through various species.
The researchers are now planning to find out how ghrelin levels differ between healthy people and people with Parkinsons disease, and whether changes in ghrelin levels might serve as a biomarker of disease susceptibility and development.
Parkinson’s sufferers find solace in group
By Chris Cobb
The Herald-Zeitung
It’s a life-changing and often debilitating illness, and one no one wants to go through on their own.
As they do twice each month, New Braunfels residents gathered Saturday at McKenna Events Center and talked about the importance of having support as they struggle to go through life while suffering from Parkinson’s Disease.
“Everyone needs this kind of support,” said Peggy Dubuque, whose husband Tommy started the local support group in 2007. “I can’t tell you how important it is.”
Around 60,000 people are diagnosed with Parkinson’s each year in the United States, and around one million people suffer from the disease in the United States alone, according to the National Parkinson Foundation.
It’s a neurological disorder that occurs when cells in the brain fail to produce dopamine. The lack of the chemical gradually impairs almost all of the body’s motor functions, often leading to shuffled walking, stiff facial expressions and tremors and shaking throughout the body.
Prior to 2007, residents in New Braunfels had to travel elsewhere to seek support or learn more about their disease.
“It can be so daunting to have to search for treatment,” said Connie Srote. “People don’t realize that when you have a disability, you can’t travel even the 30 miles to San Antonio comfortably.”
Tommy Dubuque started the group in July 2007, and the first Parkinson’s support group meeting in New Braunfels saw six people.
Today, the group has grown to 105 members who regularly attend meetings, according to Peggy Dubuque. They come to learn more from each other about treatment options, or discuss ways others suffering from Parkinson’s cope day-to-day.
“It’s important because people need to be getting all of the information that’s available,” said Pam Callia, a speech pathologist with Kirkwood Manor who presented residents Saturday with treatment options for people whose speech has been gradually stunted by the disease. “It’s definitely informative, but there’s also that component of being able to say ‘this worked for me,’ or ‘this didn’t work, what about that?’ People get a chance to interact with others going through the same thing.”
Although 15 percent of Parkinson sufferers are under the age of 50, the vast majority are over 65, according to foundation statistics — an age group that makes up a significant portion of Comal County’s population.
Around 25 percent of county residents are older than 55, according the United Way’s Comal County Community Needs Assessment.
With a large senior population and the disease so widespread, Srote stressed the importance of receiving treatment and seeking support from those in your community who can help.
“A lot of people don’t say they need help because they’re still functional, and it’s a hard thing to talk about,” she said. “But (support) can help, and having it here in New Braunfels is really a blessing.”
The group meets twice each month, once to have a group discussion and again to hear guests speakers present different treatment options or helpful tips for those with Parkinson’s.
The Herald-Zeitung
It’s a life-changing and often debilitating illness, and one no one wants to go through on their own.
As they do twice each month, New Braunfels residents gathered Saturday at McKenna Events Center and talked about the importance of having support as they struggle to go through life while suffering from Parkinson’s Disease.
“Everyone needs this kind of support,” said Peggy Dubuque, whose husband Tommy started the local support group in 2007. “I can’t tell you how important it is.”
Around 60,000 people are diagnosed with Parkinson’s each year in the United States, and around one million people suffer from the disease in the United States alone, according to the National Parkinson Foundation.
It’s a neurological disorder that occurs when cells in the brain fail to produce dopamine. The lack of the chemical gradually impairs almost all of the body’s motor functions, often leading to shuffled walking, stiff facial expressions and tremors and shaking throughout the body.
Prior to 2007, residents in New Braunfels had to travel elsewhere to seek support or learn more about their disease.
“It can be so daunting to have to search for treatment,” said Connie Srote. “People don’t realize that when you have a disability, you can’t travel even the 30 miles to San Antonio comfortably.”
Tommy Dubuque started the group in July 2007, and the first Parkinson’s support group meeting in New Braunfels saw six people.
Today, the group has grown to 105 members who regularly attend meetings, according to Peggy Dubuque. They come to learn more from each other about treatment options, or discuss ways others suffering from Parkinson’s cope day-to-day.
“It’s important because people need to be getting all of the information that’s available,” said Pam Callia, a speech pathologist with Kirkwood Manor who presented residents Saturday with treatment options for people whose speech has been gradually stunted by the disease. “It’s definitely informative, but there’s also that component of being able to say ‘this worked for me,’ or ‘this didn’t work, what about that?’ People get a chance to interact with others going through the same thing.”
Although 15 percent of Parkinson sufferers are under the age of 50, the vast majority are over 65, according to foundation statistics — an age group that makes up a significant portion of Comal County’s population.
Around 25 percent of county residents are older than 55, according the United Way’s Comal County Community Needs Assessment.
With a large senior population and the disease so widespread, Srote stressed the importance of receiving treatment and seeking support from those in your community who can help.
“A lot of people don’t say they need help because they’re still functional, and it’s a hard thing to talk about,” she said. “But (support) can help, and having it here in New Braunfels is really a blessing.”
The group meets twice each month, once to have a group discussion and again to hear guests speakers present different treatment options or helpful tips for those with Parkinson’s.
Friday, December 11, 2009
Pilot randomised controlled trial of occupational therapy to optimise independence in Parkinson's disease: the PD OT trial.
Clarke CE, Furmston A, Morgan E, Patel S, Sackley C, Walker M, Bryan S, Wheatley K.
J Neurol Neurosurg Psychiatry. 2009 Sep;80(9):976-8. Epub 2008 Mar 13.
Clinical Abstract:
OBJECTIVE: To perform a pilot trial of occupational therapy (OT) to optimise functional independence in Parkinson disease (PD) to assess accrual/withdrawal rates, acceptability, outcome measures, and inform sample-size calculation. METHOD: Non-demented patients with idiopathic PD and difficulties with activities of daily living (ADL) were recruited provided they had not received OT in the last 2 years and/or physiotherapy in the last year. Patients were randomised to immediate OT or OT after completion of the trial. Patients randomised to OT were assessed at home by an experienced therapist and then received six home treatment sessions over 2 months. Interventions were targeted at functional independence and mobility goals. Outcome measures were: Nottingham Extended Activity of Daily Living Scale, Rivermead Mobility Index, Unified Parkinson's Disease Rating Scale ADL scale, Parkinson's Disease Questionnaire 39, EuroQol-EQ-5D, Hospital Anxiety and Depression Scale, and health economics analysis. RESULTS: 39 patients (25 male; mean age 73 years) were recruited from four centres over 16 months. The mean difference in NEADL at 8 months was 3.5 (95% CI -3.2 to 10.2). The mean difference in PDQ-39 Summary Score was 3.8 (95% CI -4.94 to 12.6). There were strong correlations between the PDQ-39 and other outcomes. The intervention was acceptable to patients, with a low withdrawal rate and good questionnaire completion. CONCLUSION: Randomisation to a trial of OT in PD is feasible. NEADL and PDQ-39 are relevant outcomes and provided data to inform sample size for an adequately powered randomised trial for which there is pressing need.
J Neurol Neurosurg Psychiatry. 2009 Sep;80(9):976-8. Epub 2008 Mar 13.
Clinical Abstract:
OBJECTIVE: To perform a pilot trial of occupational therapy (OT) to optimise functional independence in Parkinson disease (PD) to assess accrual/withdrawal rates, acceptability, outcome measures, and inform sample-size calculation. METHOD: Non-demented patients with idiopathic PD and difficulties with activities of daily living (ADL) were recruited provided they had not received OT in the last 2 years and/or physiotherapy in the last year. Patients were randomised to immediate OT or OT after completion of the trial. Patients randomised to OT were assessed at home by an experienced therapist and then received six home treatment sessions over 2 months. Interventions were targeted at functional independence and mobility goals. Outcome measures were: Nottingham Extended Activity of Daily Living Scale, Rivermead Mobility Index, Unified Parkinson's Disease Rating Scale ADL scale, Parkinson's Disease Questionnaire 39, EuroQol-EQ-5D, Hospital Anxiety and Depression Scale, and health economics analysis. RESULTS: 39 patients (25 male; mean age 73 years) were recruited from four centres over 16 months. The mean difference in NEADL at 8 months was 3.5 (95% CI -3.2 to 10.2). The mean difference in PDQ-39 Summary Score was 3.8 (95% CI -4.94 to 12.6). There were strong correlations between the PDQ-39 and other outcomes. The intervention was acceptable to patients, with a low withdrawal rate and good questionnaire completion. CONCLUSION: Randomisation to a trial of OT in PD is feasible. NEADL and PDQ-39 are relevant outcomes and provided data to inform sample size for an adequately powered randomised trial for which there is pressing need.
New options for Parkinson's treatment
By: Kerstin Kealy, WDAY
Patients with Parkinson’s here in the Valley have a new option for treatment. MeritCare has started the L-S-V-T Big program and just a few months in, it's making a big difference in the lives of patients. Last night, our friend, former WDAY Anchor Marv Bossart shared his courageous story as he battles this difficult disease. Big and the L-S-V-T Loud program are giving Marv back and others like him what Parkinson's threatens to steal away.
As a News Anchor for 42 years, Marv Bossart was known for his voice. 7 years after a diagnosis of Parkinson’s, he is fighting to keep it.
“I hate the fact that my voice is fading, I made my living on my voice.”
He's among 89% of those with Parkinson’s who have problems with speech.
“His biggest complaint coming in to see me was that he was losing himself in crowds in people and not being heard and not understanding that.”
The Loud program is an intensive month long speech therapy that recalibrates your brain, teaching you to think loud and talk loud. It's showing dramatic results.
“You can see in one day, day one progress.”
From Loud to Big, Marv re-learns what many of us take for granted. Things like getting up from a chair, reaching, and walking.
“Marv has one of the best attitudes I’ve ever seen.”
Since the program started at MeritCare in May, Physical Therapist Laura Guse has used big to help Parkinson’s patients walk faster with bigger steps and have better balance, a serious safety issue for those with Parkinson’s.
“I was getting along just fine and one day all of a sudden I fell in our driveway and I fell hard.”
Laura says the results from big have shown twice the improvement for Parkinson’s patients than traditional physical therapy.
“They really feel empowered over their disease and they have a lot more confidence in the way that they move, they feel less fearful of falling.”
Marv's doctor, MeritCare Neurologist Dr. Tanya Harlow, says up to 70 percent of her patients here at NRI have Parkinson's.
“I could spend my entire time as a physician just seeing Parkinson’s disease because there are that any patients.”
She and Marv talked about another option for treatment, deep brain stimulation, but Marv decided it wasn't worth the risks, instead opting for physical therapy and medication.
“He’s becoming more advanced as far as his Parkinson’s disease goes so the motor complications I mentioned before as far as the diskinesias are starting to become more problematic for him.”
Dr. Harlow says the key to one day curing this brain disorder is figure out what causes it. Something she is hopeful will happen in the next decade.
“I think it's going to be a breakthrough. There's so much research going in I’m hoping it's going to be sooner rather than later.
For now the key to fighting this disease, something Marv knows well, staying active.
“I’m not going to give up without a fight of some kind.”
Patients with Parkinson’s here in the Valley have a new option for treatment. MeritCare has started the L-S-V-T Big program and just a few months in, it's making a big difference in the lives of patients. Last night, our friend, former WDAY Anchor Marv Bossart shared his courageous story as he battles this difficult disease. Big and the L-S-V-T Loud program are giving Marv back and others like him what Parkinson's threatens to steal away.
As a News Anchor for 42 years, Marv Bossart was known for his voice. 7 years after a diagnosis of Parkinson’s, he is fighting to keep it.
“I hate the fact that my voice is fading, I made my living on my voice.”
He's among 89% of those with Parkinson’s who have problems with speech.
“His biggest complaint coming in to see me was that he was losing himself in crowds in people and not being heard and not understanding that.”
The Loud program is an intensive month long speech therapy that recalibrates your brain, teaching you to think loud and talk loud. It's showing dramatic results.
“You can see in one day, day one progress.”
From Loud to Big, Marv re-learns what many of us take for granted. Things like getting up from a chair, reaching, and walking.
“Marv has one of the best attitudes I’ve ever seen.”
Since the program started at MeritCare in May, Physical Therapist Laura Guse has used big to help Parkinson’s patients walk faster with bigger steps and have better balance, a serious safety issue for those with Parkinson’s.
“I was getting along just fine and one day all of a sudden I fell in our driveway and I fell hard.”
Laura says the results from big have shown twice the improvement for Parkinson’s patients than traditional physical therapy.
“They really feel empowered over their disease and they have a lot more confidence in the way that they move, they feel less fearful of falling.”
Marv's doctor, MeritCare Neurologist Dr. Tanya Harlow, says up to 70 percent of her patients here at NRI have Parkinson's.
“I could spend my entire time as a physician just seeing Parkinson’s disease because there are that any patients.”
She and Marv talked about another option for treatment, deep brain stimulation, but Marv decided it wasn't worth the risks, instead opting for physical therapy and medication.
“He’s becoming more advanced as far as his Parkinson’s disease goes so the motor complications I mentioned before as far as the diskinesias are starting to become more problematic for him.”
Dr. Harlow says the key to one day curing this brain disorder is figure out what causes it. Something she is hopeful will happen in the next decade.
“I think it's going to be a breakthrough. There's so much research going in I’m hoping it's going to be sooner rather than later.
For now the key to fighting this disease, something Marv knows well, staying active.
“I’m not going to give up without a fight of some kind.”
Neurologix completes all surgical procedures in Phase II Parkinson's disease study
US clinical-stage biotechnology company Neurologix Inc (OTC: NRGX) said today it has completed all planned surgeries in an ongoing Phase II study of its gene transfer approach to the treatment of advanced Parkinson's disease.
The controlled, double-blind, 44-patient Phase II trial is investigating the safety and efficacy of a novel non-dopamine approach to restore motor function in Parkinson's patients who are sub-optimally responsive to available drug therapy. The company expects to announce initial efficacy results from the trial in mid-2010.
The investigators are assessing each of the trial participants over time for treatment effects, with the primary trial endpoint being a clinical assessment of motor function at 6 months using the Unified Parkinson's Disease Rating Scale (UPDRS). All participants in the trial will also be monitored for safety for 12 months following their gene transfer procedure.
CEO John Mordock said that the company's gene therapy approach to Parkinson's aims to provide a safer and more effective alternative to either dopamine replacement therapies or deep brain stimulation for patients with advanced stages of the disease. Neurologix's strategy is to deliver a gene ("GAD") that reestablishes the production of GABA (gamma-aminobutyric acid), the major brain inhibitory neurotransmitter that helps "quiet" excessive neuronal firing, added Mordock and continued that scientists have determined this neurotransmitter to be deficient in the brains of patients in the advanced stages of Parkinson's disease.
The controlled, double-blind, 44-patient Phase II trial is investigating the safety and efficacy of a novel non-dopamine approach to restore motor function in Parkinson's patients who are sub-optimally responsive to available drug therapy. The company expects to announce initial efficacy results from the trial in mid-2010.
The investigators are assessing each of the trial participants over time for treatment effects, with the primary trial endpoint being a clinical assessment of motor function at 6 months using the Unified Parkinson's Disease Rating Scale (UPDRS). All participants in the trial will also be monitored for safety for 12 months following their gene transfer procedure.
CEO John Mordock said that the company's gene therapy approach to Parkinson's aims to provide a safer and more effective alternative to either dopamine replacement therapies or deep brain stimulation for patients with advanced stages of the disease. Neurologix's strategy is to deliver a gene ("GAD") that reestablishes the production of GABA (gamma-aminobutyric acid), the major brain inhibitory neurotransmitter that helps "quiet" excessive neuronal firing, added Mordock and continued that scientists have determined this neurotransmitter to be deficient in the brains of patients in the advanced stages of Parkinson's disease.
Author who suffers from Parkinson's teaches innovative yoga class
By Katie Curley Katzman
Renee Le Verrier leads a group of five women in stretching, balancing and relaxation poses on a recent afternoon at the Yoga Center of Newburyport.
The only difference between this class and others is that a chair and variety of other props makes the class more accessible.
Blocks, straps, blankets and cushions all help to make stretches lighter and bring the distance from hand to foot closer for the participants.
"This isn't chair yoga because we are not just in the chair," Le Verrier said. "The chair is just a prop to bring the floor closer to us."
Le Verrier teaches yoga for movement disorders, a weekly class aimed at making yoga possible for individuals who have any restrictions, including those stemming from osteoporosis or Parkinson's disease.
But it is also geared at those who just feel a little "creaky."
"If you can breath, you can do yoga," Le Verrier said. "Yoga can be intimidating to people especially when you go to a yoga studio, but yoga is most beneficial to those with limitations and movement disorders."
Le Verrier should know. As a child, she suffered a stroke. Five years ago, at age 42, she was diagnosed with Parkinson's, a brain disorder affecting both men and women. She has been practicing yoga for eight years and teaching for three at the Yoga Center of Newburyport as well as Whittier Rehabilitation Hospital in Bradford and Massachusetts General Hospital.
"I've learned through yoga to live in the moment," she said.
Le Verrier was recently chosen as one of 25 people nationwide to attend the Parkinson's Disease Foundation's Clinical Research Learning Institute. The training prepares participants to serve as advocates for bringing new treatment information to their communities as well as serving as a formal representative on clinical research and advisory boards.
According to the National Parkinson' Foundation, the condition usually develops after age 65, but 15 percent of people, like Le Verrier, are diagnosed before age 50. About 1 million Americans suffer from Parkinson's, with an estimated 60,000 new cases diagnosed each year.
Le Verrier said yoga is an effective tool for Parkinson's because the disease affects certain dopamine-producing nerve cells (neurons) in one part of the brain that die or become impaired. Dopamine allows for smooth, coordinated muscle movement, so when it becomes limited in the body, symptoms such as tremors, shaking and rigidity are said to result.
Le Verrier credits yoga with aiding her not only physically, but spiritually as well. While her once excruciating back pain is now gone, she said she continues to benefit by the lessons yoga has taught her about breathing through hard times and noticing life more.
"When I feel myself being affected by something, I can go back to my breathing," she said. "I'm not dismissing whatever is happening, but I can breath it out."
Le Verrier said yoga also helped her unblock energy flow and allowed her to become more creative through painting.
"Before, I had a phobia of art," she said. "But one snowy day, I started painting with my first grader and I just let the creative energy happen."
As a yoga teacher, Le Verrier has pushed to provide classes for other students like herself and has also worked to educate teachers on how to work with individuals who have Parkinson's. Recently, she taught a large workshop for yoga teachers from area gyms, hospitals, rehabilitation centers and studios.
"Exercise is beneficial in managing Parkinson's," she said. "It gives a sense of well being, makes breathing easier, affects posture. I hope I can bring a little of that in."
When students with movement disorders or Parkinson's attend a typical yoga class, Le Verrier said teachers often don't tailor the class to their limitations or become too gentle with them, and they're unable to fully garner the benefits.
"The teachers get nervous and tell the student to sit a pose out," said Le Verrier, who gives instructors specific things they can do to change their teaching approach.
In addition to her work teaching, Le Verrier has published a yoga book, with another on its way to the printer. "Yoga for Movement Disorders," published by Merit Press, is a workbook with poses and stretches those with limitations can do at home or in a studio setting. "A, B, C ... X, Yoga, Z," a playful introduction to yoga for kids using the ABCs, is due out soon.
Le Verrier said many people stop doing the activities they used to when they are diagnosed with Parkinson's or a movement disorder, including playing with children and grandchildren.
"The ABC book is a wonderful way to do something and move together," she said. "Grandparents can do this with their grandchildren even though they may not be able to play soccer with them anymore."
Renee Le Verrier leads a group of five women in stretching, balancing and relaxation poses on a recent afternoon at the Yoga Center of Newburyport.
The only difference between this class and others is that a chair and variety of other props makes the class more accessible.
Blocks, straps, blankets and cushions all help to make stretches lighter and bring the distance from hand to foot closer for the participants.
"This isn't chair yoga because we are not just in the chair," Le Verrier said. "The chair is just a prop to bring the floor closer to us."
Le Verrier teaches yoga for movement disorders, a weekly class aimed at making yoga possible for individuals who have any restrictions, including those stemming from osteoporosis or Parkinson's disease.
But it is also geared at those who just feel a little "creaky."
"If you can breath, you can do yoga," Le Verrier said. "Yoga can be intimidating to people especially when you go to a yoga studio, but yoga is most beneficial to those with limitations and movement disorders."
Le Verrier should know. As a child, she suffered a stroke. Five years ago, at age 42, she was diagnosed with Parkinson's, a brain disorder affecting both men and women. She has been practicing yoga for eight years and teaching for three at the Yoga Center of Newburyport as well as Whittier Rehabilitation Hospital in Bradford and Massachusetts General Hospital.
"I've learned through yoga to live in the moment," she said.
Le Verrier was recently chosen as one of 25 people nationwide to attend the Parkinson's Disease Foundation's Clinical Research Learning Institute. The training prepares participants to serve as advocates for bringing new treatment information to their communities as well as serving as a formal representative on clinical research and advisory boards.
According to the National Parkinson' Foundation, the condition usually develops after age 65, but 15 percent of people, like Le Verrier, are diagnosed before age 50. About 1 million Americans suffer from Parkinson's, with an estimated 60,000 new cases diagnosed each year.
Le Verrier said yoga is an effective tool for Parkinson's because the disease affects certain dopamine-producing nerve cells (neurons) in one part of the brain that die or become impaired. Dopamine allows for smooth, coordinated muscle movement, so when it becomes limited in the body, symptoms such as tremors, shaking and rigidity are said to result.
Le Verrier credits yoga with aiding her not only physically, but spiritually as well. While her once excruciating back pain is now gone, she said she continues to benefit by the lessons yoga has taught her about breathing through hard times and noticing life more.
"When I feel myself being affected by something, I can go back to my breathing," she said. "I'm not dismissing whatever is happening, but I can breath it out."
Le Verrier said yoga also helped her unblock energy flow and allowed her to become more creative through painting.
"Before, I had a phobia of art," she said. "But one snowy day, I started painting with my first grader and I just let the creative energy happen."
As a yoga teacher, Le Verrier has pushed to provide classes for other students like herself and has also worked to educate teachers on how to work with individuals who have Parkinson's. Recently, she taught a large workshop for yoga teachers from area gyms, hospitals, rehabilitation centers and studios.
"Exercise is beneficial in managing Parkinson's," she said. "It gives a sense of well being, makes breathing easier, affects posture. I hope I can bring a little of that in."
When students with movement disorders or Parkinson's attend a typical yoga class, Le Verrier said teachers often don't tailor the class to their limitations or become too gentle with them, and they're unable to fully garner the benefits.
"The teachers get nervous and tell the student to sit a pose out," said Le Verrier, who gives instructors specific things they can do to change their teaching approach.
In addition to her work teaching, Le Verrier has published a yoga book, with another on its way to the printer. "Yoga for Movement Disorders," published by Merit Press, is a workbook with poses and stretches those with limitations can do at home or in a studio setting. "A, B, C ... X, Yoga, Z," a playful introduction to yoga for kids using the ABCs, is due out soon.
Le Verrier said many people stop doing the activities they used to when they are diagnosed with Parkinson's or a movement disorder, including playing with children and grandchildren.
"The ABC book is a wonderful way to do something and move together," she said. "Grandparents can do this with their grandchildren even though they may not be able to play soccer with them anymore."
Thursday, December 10, 2009
Sewing Support
By Lucretia Cardenas
The hands of Parkinson’s disease patients can tremble but they can still create a beautiful, meaningful quilt.
Proving that they are “not incapacitated, just disabled,” Parkinson patients from across the nation – who have become friends through an online chat room on PatientsLikeMe.com – crafted a quilt now circulating from one home to another. Right now, the quilt is with Conroe resident Vic Lopez, 64.
He’s battled Parkinson’s disease since 1998. When the illness worsened, he underwent a deep brain stimulation treatment in 2006. The connections in the wired stimulation system, which sends signals to his body to control his symptoms, aren’t great and Lopez had it replaced Thursday.
The quilt, which has two squares Lopez sewed and a third he helped to create, have deep meaning for Lopez – a strength among friendships formed, a strength of overcoming stigmas and a strength in taking on challenges. One square of the quilt symbolizes those strengths, with a picture of two tulips tied together for support by a string.
Another square describes the struggle of Parkinson’s patients.
“We’re fighting for our dignity, each day an endless test,” the poem reads. “We’re searching for the cure, so we can ease our quest.”
Lopez’s individual square has his screen name “vig wig” written on it and states that he “writes, fishes, naps, chats online, plays oldies music – garbage waits.” He also placed pictures on it of a fish he caught in Lake Conroe, a man wearing a large sombrero napping against a cactus and an LP record.
The quilt took just over a year to make, Lopez said. Each member of the online forum contributed a square, and a professional quilter bound them all together.
No decision has been made about where the quilt will end up, but the chat room friends don’t want it to gather dust in an office building or raffle it off, Lopez said. For now, it will continue to circulate from member to member across the nation so they can share the message the quilt represents.
“I’ve got Parkinson’s but it hasn’t got me,” Lopez said. “We can do this in spite of the disease.”
The hands of Parkinson’s disease patients can tremble but they can still create a beautiful, meaningful quilt.
Proving that they are “not incapacitated, just disabled,” Parkinson patients from across the nation – who have become friends through an online chat room on PatientsLikeMe.com – crafted a quilt now circulating from one home to another. Right now, the quilt is with Conroe resident Vic Lopez, 64.
He’s battled Parkinson’s disease since 1998. When the illness worsened, he underwent a deep brain stimulation treatment in 2006. The connections in the wired stimulation system, which sends signals to his body to control his symptoms, aren’t great and Lopez had it replaced Thursday.
The quilt, which has two squares Lopez sewed and a third he helped to create, have deep meaning for Lopez – a strength among friendships formed, a strength of overcoming stigmas and a strength in taking on challenges. One square of the quilt symbolizes those strengths, with a picture of two tulips tied together for support by a string.
Another square describes the struggle of Parkinson’s patients.
“We’re fighting for our dignity, each day an endless test,” the poem reads. “We’re searching for the cure, so we can ease our quest.”
Lopez’s individual square has his screen name “vig wig” written on it and states that he “writes, fishes, naps, chats online, plays oldies music – garbage waits.” He also placed pictures on it of a fish he caught in Lake Conroe, a man wearing a large sombrero napping against a cactus and an LP record.
The quilt took just over a year to make, Lopez said. Each member of the online forum contributed a square, and a professional quilter bound them all together.
No decision has been made about where the quilt will end up, but the chat room friends don’t want it to gather dust in an office building or raffle it off, Lopez said. For now, it will continue to circulate from member to member across the nation so they can share the message the quilt represents.
“I’ve got Parkinson’s but it hasn’t got me,” Lopez said. “We can do this in spite of the disease.”
Parkinson’s Disease Patients Treated with Autologous Bone Marrow Stem Cells May Improve Their Quality of Life
Eight Parkinson’s Disease patients were treated with their own bone marrow stem cells (BMSC) injected via minimally invasive non-surgical routes and discharged the next morning without complications.
“We show the clinical use of autologous BMSC in PD patients, not in animal tests” leader investigator Dr. Luis Geffner said.
Evaluations with UPDRS, Hoehn & Yahr scale and Schwab & England score showed encouraging improvements such as the graphologic tests performed before and after the trasplant that demonstrated significant differences.
Additionally the total L-dopamine dose could be decreased suggesting that stem cells may enhance endogenous dopamine synthesis. He also explained that they are very cautious and prudent emphasizing that they are not talking about cure but stem cells may possibly be a new tool to complement current treatments and delay the progress either of the illness or its complications such as the side effects of some medication.
This study showing safety and feasibility of autologous adult BMSC transplant in PD patients was presented in Baltimore on October 11th 2009 in the 23rd Annual Symposium of Etiology, Pathogenesis and Treatment of Parkinson’s Disease and other Movement Disorders organized by the Parkinson Study Group in affiliation with the American Neurological Association and published in September 2009 issue of Movement Disorders, a peer -review journal.
Geffner's team has already transplanted 144 patients suffering from different illnesses or trauma states and many of them have been followed up 5 years showing that autologous adult BMSC neither provoke tumors, immunologic rejection, infections nor arise ethical or religious controversies.
“We show the clinical use of autologous BMSC in PD patients, not in animal tests” leader investigator Dr. Luis Geffner said.
Evaluations with UPDRS, Hoehn & Yahr scale and Schwab & England score showed encouraging improvements such as the graphologic tests performed before and after the trasplant that demonstrated significant differences.
Additionally the total L-dopamine dose could be decreased suggesting that stem cells may enhance endogenous dopamine synthesis. He also explained that they are very cautious and prudent emphasizing that they are not talking about cure but stem cells may possibly be a new tool to complement current treatments and delay the progress either of the illness or its complications such as the side effects of some medication.
This study showing safety and feasibility of autologous adult BMSC transplant in PD patients was presented in Baltimore on October 11th 2009 in the 23rd Annual Symposium of Etiology, Pathogenesis and Treatment of Parkinson’s Disease and other Movement Disorders organized by the Parkinson Study Group in affiliation with the American Neurological Association and published in September 2009 issue of Movement Disorders, a peer -review journal.
Geffner's team has already transplanted 144 patients suffering from different illnesses or trauma states and many of them have been followed up 5 years showing that autologous adult BMSC neither provoke tumors, immunologic rejection, infections nor arise ethical or religious controversies.
Wednesday, December 9, 2009
Constipation May Be Early Clue to Parkinson's Disease
By Charles Bankhead, Staff Writer, MedPage Today
Constipation may represent one of the earliest signs of Parkinson's disease, preceding the onset of motor symptoms by two decades or more, data from a case-control study suggest.
Patients with Parkinson's disease were more than twice as likely to report a history of constipation compared with a control population. The association remained significant after controlling for other factors associated with constipation, according to a report in the December issue of Neurology.
Though constipation is not specific for Parkinson's disease, the findings are consistent with the hypothesis that Parkinson's disease adversely affects autonomic function early in the course of pathogenesis.
"Our findings may suggest that constipation is an early manifestation of the neurodegenerative process underlying Parkinson's disease, and that it frequently precedes the classic motor signs of Parkinson's disease by several decades in both men and women," Walter A. Rocca, MD, of the Mayo Clinic in Rochester, Minn., and colleagues concluded.
Action Points
* Explain to patients that people with Parkinson's disease often report a history of constipation.
* Note that the findings came from a retrospective analysis of medical records and do not prove that constipation plays a role in Parkinson's disease.
However, they cautioned that "there are alternative explanations for this association."
Autonomic dysfunction is a recognized component of the pathogenetic process of Parkinson's disease, and Lewy bodies are consistently found in the autonomic nervous system of patients who have died with Parkinson's disease.
Constipation is one of the most common manifestations of autonomic dysfunction and often is present at the onset of motor symptoms or progression of Parkinson's disease, the authors noted.
In some cases, constipation may precede the onset of motor symptoms in Parkinson's patients. Data from the Honolulu-Asia Aging Study showed that men who reported less frequent bowel movements had an increased risk of Parkinson's disease during a 24-year follow-up period (Neurology 2001; 57: 456-62, J Neurol 2003; 250(suppl 3): III30-39).
Other reports from the Honolulu study described an association between constipation and incidental Lewy body disease and a reduced neuronal density in the substantia nigra (Mov Disord 2007; 22: 1581-86, Mov Disord 2009; 24: 371-76).
Consistent with clinical and pathologic findings, the Braak staging system of Parkinson's disease neuropathology predicts early involvement in the disease process (Neurosci Lett 2006; 396: 67-72).
Continuing this line of work, investigators reviewed medical records of participants in the Rochester Epidemiology Project. They identified all patients who developed Parkinson's disease (by conventional diagnostic criteria) from 1976 through 1995. Each case was matched by age and sex with a member of the general population of participants in the epidemiologic study.
Investigators defined constipation as a diagnosis of constipation in the medical records or use of drugs to treat constipation, even in the absence of a diagnosis.
The analysis revealed 196 patients who developed Parkinson's disease during the period reviewed. The authors found that 71 (36.2%) patients with Parkinson's disease had a history of constipation compared with 40 (20.4%) of the control group. The difference translated into an odds ratio of 2.48 for cases versus controls (95% CI 1.49 to 4.11, P=0.0005).
The association between constipation and Parkinson's disease remained significant after adjusting for smoking and coffee consumption and exclusion of possible drug-induced constipation.
Moreover, the association remained significant in an analysis limited to patients with constipation documented 20 or more years before the onset of motor symptoms of Parkinson's disease (OR 2.98, 95% CI 1.48 to 6.03, P=0.002).
The association was stronger in women (OR 3.38) than in men (OR 1.92) and in patients with rest tremor versus those without, but the differences did not reach statistical significance.
Although the data supported the biologic plausibility of constipation as an early nonmotor manifestation of Parkinson's disease, the authors offered several alternative explanations:
* Constipation and Parkinson's disease could be independent manifestations of an unknown risk factor
* The association might reflect a genetic susceptibility
* Constipation might have an indirect, but causal, role in Parkinson's disease, such as increased intestinal absorption of substances toxic to the substantia nigra
"However, the evidence in support of these alternative interpretations remains limited," the authors said.
Constipation may represent one of the earliest signs of Parkinson's disease, preceding the onset of motor symptoms by two decades or more, data from a case-control study suggest.
Patients with Parkinson's disease were more than twice as likely to report a history of constipation compared with a control population. The association remained significant after controlling for other factors associated with constipation, according to a report in the December issue of Neurology.
Though constipation is not specific for Parkinson's disease, the findings are consistent with the hypothesis that Parkinson's disease adversely affects autonomic function early in the course of pathogenesis.
"Our findings may suggest that constipation is an early manifestation of the neurodegenerative process underlying Parkinson's disease, and that it frequently precedes the classic motor signs of Parkinson's disease by several decades in both men and women," Walter A. Rocca, MD, of the Mayo Clinic in Rochester, Minn., and colleagues concluded.
Action Points
* Explain to patients that people with Parkinson's disease often report a history of constipation.
* Note that the findings came from a retrospective analysis of medical records and do not prove that constipation plays a role in Parkinson's disease.
However, they cautioned that "there are alternative explanations for this association."
Autonomic dysfunction is a recognized component of the pathogenetic process of Parkinson's disease, and Lewy bodies are consistently found in the autonomic nervous system of patients who have died with Parkinson's disease.
Constipation is one of the most common manifestations of autonomic dysfunction and often is present at the onset of motor symptoms or progression of Parkinson's disease, the authors noted.
In some cases, constipation may precede the onset of motor symptoms in Parkinson's patients. Data from the Honolulu-Asia Aging Study showed that men who reported less frequent bowel movements had an increased risk of Parkinson's disease during a 24-year follow-up period (Neurology 2001; 57: 456-62, J Neurol 2003; 250(suppl 3): III30-39).
Other reports from the Honolulu study described an association between constipation and incidental Lewy body disease and a reduced neuronal density in the substantia nigra (Mov Disord 2007; 22: 1581-86, Mov Disord 2009; 24: 371-76).
Consistent with clinical and pathologic findings, the Braak staging system of Parkinson's disease neuropathology predicts early involvement in the disease process (Neurosci Lett 2006; 396: 67-72).
Continuing this line of work, investigators reviewed medical records of participants in the Rochester Epidemiology Project. They identified all patients who developed Parkinson's disease (by conventional diagnostic criteria) from 1976 through 1995. Each case was matched by age and sex with a member of the general population of participants in the epidemiologic study.
Investigators defined constipation as a diagnosis of constipation in the medical records or use of drugs to treat constipation, even in the absence of a diagnosis.
The analysis revealed 196 patients who developed Parkinson's disease during the period reviewed. The authors found that 71 (36.2%) patients with Parkinson's disease had a history of constipation compared with 40 (20.4%) of the control group. The difference translated into an odds ratio of 2.48 for cases versus controls (95% CI 1.49 to 4.11, P=0.0005).
The association between constipation and Parkinson's disease remained significant after adjusting for smoking and coffee consumption and exclusion of possible drug-induced constipation.
Moreover, the association remained significant in an analysis limited to patients with constipation documented 20 or more years before the onset of motor symptoms of Parkinson's disease (OR 2.98, 95% CI 1.48 to 6.03, P=0.002).
The association was stronger in women (OR 3.38) than in men (OR 1.92) and in patients with rest tremor versus those without, but the differences did not reach statistical significance.
Although the data supported the biologic plausibility of constipation as an early nonmotor manifestation of Parkinson's disease, the authors offered several alternative explanations:
* Constipation and Parkinson's disease could be independent manifestations of an unknown risk factor
* The association might reflect a genetic susceptibility
* Constipation might have an indirect, but causal, role in Parkinson's disease, such as increased intestinal absorption of substances toxic to the substantia nigra
"However, the evidence in support of these alternative interpretations remains limited," the authors said.
Freddie Roach acts like a man by calling out columnist Alex Vidal
by: Samuel Rossi
Word has hit the internet that legendary trainer and Parkinson's victim Freddie Roach is being sued by writer Alex Vidal over comments and actions directed toward the reporter. In July of last year, Vidal wrote a story entitled, 'Sick' Roach Misses Conepcion's Final Workout in Wild Card Gym. In that story, Vidal reported that Roach, who has suffered from Parkinson's Disease as a result of his days inside the ring, had been hospitalized with flu-like symptoms days prior to Concepcion's fight against Adam Carrera due to his illness. Several outlets have reported that Vidal's lawsuit came about after Roach confronted the writer over his piece.
Vidal claims that, after apologizing to Roach for the piece, the trainer threatened to "kill" the writer if he were ever again to write about his illness, and approached him in a physical nature. Celebrity gossip site TMZ is reporting that the trainer is being sued for "assault, battery, and infliction of emotional distress."
While I was not anywhere near the Wild Card Gym on the day Roach is said to have threatened the writer, I wish only to offer an endorsement of Freddie Roach's overall character.
Roach - a future first ballot hall-of-fame trainer of fighters like Manny Pacquiao, Virgil Hill, James Toney, and Mike Tyson - is a treasure to our sport. The wise and energetic trainer represents all that is good in the world of boxing. Here is a man who stands in the face of adversity at the dawn of every new day. Here is a man who offers fighters his knowledge and know-how in hopes that they do not end up suffering from the same life-crushing disease that currenly plagues him. Here is a man who has experienced the best and the worst that boxing has to offer. Freddie Roach is a man with no complaints.
As he nears the age of 50, Freddie Roach continues to face a debilitating and life-wrenching disease on a daily basis; a disease in which no cure nor victor is known. He suffers from an illness that that takes away abilities and luxuries with absolutely no remorse. Yet, he continues to stand - he continues to fight.
I am reminded of the legendary college basketball coach Jim Valvano who once stood before an audience as a dying and cancer-riddled man and expressed his thoughts on the disease that weakened him. The former North Carolina State coach said that though his disease had the power to take away all of his physical abilities, it would never be able to touch his mind, his heart, nor his soul. Through his actions and demeanor, it is clear to me that Freddie Roach lives life by way of a similar mantra.
Roach is a man of strong mind. He is a genius in regards to the fight game, if there has ever been one. He is a man who understands the risks of this sport, as much as he knows the glory one can attain from it.
I think that Mr. Vidal, myself, and others in the boxing community should simply sit back and allow this man to continue passing along his wisdom to as many fighters as possible - with no commentary needed, other than words of praise.
In short, I am grateful to observe a world in which Freddie Roach is a teacher of men.
A carrier of courage's torch.
Word has hit the internet that legendary trainer and Parkinson's victim Freddie Roach is being sued by writer Alex Vidal over comments and actions directed toward the reporter. In July of last year, Vidal wrote a story entitled, 'Sick' Roach Misses Conepcion's Final Workout in Wild Card Gym. In that story, Vidal reported that Roach, who has suffered from Parkinson's Disease as a result of his days inside the ring, had been hospitalized with flu-like symptoms days prior to Concepcion's fight against Adam Carrera due to his illness. Several outlets have reported that Vidal's lawsuit came about after Roach confronted the writer over his piece.
Vidal claims that, after apologizing to Roach for the piece, the trainer threatened to "kill" the writer if he were ever again to write about his illness, and approached him in a physical nature. Celebrity gossip site TMZ is reporting that the trainer is being sued for "assault, battery, and infliction of emotional distress."
While I was not anywhere near the Wild Card Gym on the day Roach is said to have threatened the writer, I wish only to offer an endorsement of Freddie Roach's overall character.
Roach - a future first ballot hall-of-fame trainer of fighters like Manny Pacquiao, Virgil Hill, James Toney, and Mike Tyson - is a treasure to our sport. The wise and energetic trainer represents all that is good in the world of boxing. Here is a man who stands in the face of adversity at the dawn of every new day. Here is a man who offers fighters his knowledge and know-how in hopes that they do not end up suffering from the same life-crushing disease that currenly plagues him. Here is a man who has experienced the best and the worst that boxing has to offer. Freddie Roach is a man with no complaints.
As he nears the age of 50, Freddie Roach continues to face a debilitating and life-wrenching disease on a daily basis; a disease in which no cure nor victor is known. He suffers from an illness that that takes away abilities and luxuries with absolutely no remorse. Yet, he continues to stand - he continues to fight.
I am reminded of the legendary college basketball coach Jim Valvano who once stood before an audience as a dying and cancer-riddled man and expressed his thoughts on the disease that weakened him. The former North Carolina State coach said that though his disease had the power to take away all of his physical abilities, it would never be able to touch his mind, his heart, nor his soul. Through his actions and demeanor, it is clear to me that Freddie Roach lives life by way of a similar mantra.
Roach is a man of strong mind. He is a genius in regards to the fight game, if there has ever been one. He is a man who understands the risks of this sport, as much as he knows the glory one can attain from it.
I think that Mr. Vidal, myself, and others in the boxing community should simply sit back and allow this man to continue passing along his wisdom to as many fighters as possible - with no commentary needed, other than words of praise.
In short, I am grateful to observe a world in which Freddie Roach is a teacher of men.
A carrier of courage's torch.
Tuesday, December 8, 2009
Understanding Parkinson’s disease
By Dr N. K. CHEW
THE most common reaction for most people first diagnosed with Parkinson’s disease would be one of disbelief. This would quickly progress to denial. Family members and friends would also be equally affected by the news.
It would be understandable if the first question that crops up is: “How are we going to cope?”
That denial kicks in almost immediately for many Parkinson’s sufferers and their families is a given. However, getting over the denial is a crucial if a sufferer and caregiver want to cope with the consequences of a positive diagnosis of this disease.
So it is paramount to learn as much about the disease, and understand how treatment can help sufferers improve their quality of life.
What is Parkinson’s disease?
Parkinson’s disease (PD) is a brain disorder that occurs when certain nerve cells or neurons in the brain die or become impaired. When this happens, these cells no longer produce a chemical called dopamine, which facilitate the smooth, coordinated function of our muscles. When about 80% of these neurons die or get damaged, that’s when Parkinson’s makes an appearance.
One of the misconceptions about Parkinson’s disease is that it’s a disease of old age. It’s not. Just ask Michael J. Fox, who was diagnosed with the disease when he was 30 years old.
The tell-tale signs include tremors, slowness of movement, rigidity, difficulty with balance, small, cramped handwriting, stiff facial expressions, a shuffling walk, muffled speech, and depression.
There is a misconception that Parkinson’s is an old-age disease but, in fact, about 15% of people diagnosed with Parkinson’s come from the 50-year-old and below age bracket. The disease strikes anyone regardless of gender, age, social status, culture, or profession.
And it gets worse as the process of diagnosing the disease is difficult, at best, as there is no one simple test when it comes to confirming the presence of Parkinson’s. A doctor can only arrive at a diagnosis for the condition only through a patient’s medical history and a series of physical examinations.
Magnetic resonance imaging (MRIs) and blood tests can help rule out other conditions that have similar symptoms, but those who are suspected to be suffering from Parkinson’s should seek out a neurologist who specialises in Parkinson’s Disease.
Parkinson’s is also not just a movement disorder as patients can also suffer from a long list of non-motor symptoms such as depression, confusion, hallucination, anxiety, and dementia as well as intestinal disorders, loss of sense of smell, and sleep disturbances.
It is also believed that several non-motor symptoms such as loss of sense of smell, depression, sleep disorders, fatigue, anxiety, and constipation may precede the motor symptoms of Parkinson’s by a few years, and thus can be considered as early symptoms of the disease.
Can it be treated?
Parkinson’s remains an incurable illness. Due to the progressive loss of brain cells, Parkinson’s progresses with time, resulting in gradual and inevitable deterioration of the initial motor symptoms. As the illness advances, the non-motor symptoms such as psychiatric disorders also become more frequent, especially during the advanced stage of illness.
In addition, many patients also develop involuntary body movements and suffer reduced effects of medications towards the later stage of the illness. All these complications result in long-term disability in Parkinson’s patients and in almost all aspects of life – physical, mental, occupational, and social.
There are, however, a number of effective medicines that help ease the symptoms of the disease. Most symptoms are caused by a lack of dopamine, and medicines most commonly used will attempt to either replace or mimic dopamine, which help to reduce tremors, lessen rigidity, and improves slowness of movements associated with Parkinson’s disease. Several new medicines are also being studied that may slow the progression of the disease. Many promise to improve the lives of people with the disease.
Medications used in the treatment of Parkinson’s disease in Malaysia
When it comes to treating Parkinson’s disease, there are different classes of drugs used at different stages of the disease – most often in combination or sometimes on its own depending on the severity of the condition, the age of the sufferer, and tolerance to medication. Initial treatment is individualised.
The classes of drugs used are levodopa, dopamine agonists, COMT-inhibitors, MAO-B-inhibitors, and anticholinergic drugs. Constant monitoring by the neurologist, patient and caregiver is crucial in determining the right dosages and types of medications to treat the condition. And each case is unique.
For early (initial) to moderate stages of Parkinson’s (five to 10 years), most patients (especially younger Parkinson’s patients) are prescribed dopamine agonist drugs such as ropinirole and can live a reasonably good quality of life while delaying the onset of motor complications or dyskinesia and the need for levodopa treatment. Levodopa will be used at a more advanced stage.
Dopamine agonist medications help to enhance the activity of dopamine in the brain to relief the symptoms of Parkinson’s. As the disease advances, they can also be used to treat motor fluctuations.
However, as the physical disability of Parkinson’s patients become more severe with time – after 10-15 years – many of them have difficulty carrying out daily activities despite taking maximum medications – a combination of many of the classes of medications.
Also, it has to be emphasised that Parkinson’s patients can only expect up to 90% level of improvement even with the best medications. Parkinson’s treatment cannot completely compensate for the dopamine deficiency in the brain. It is important that Parkinson’s patients be realistic in their expectations – there are no ideal medications for this illness. When the illness advances, and when patients’ symptoms are no longer well-controlled with medications (e.g. uncontrollable tremors), brain surgery can be effective in relieving the main symptoms of Parkinson’s such as slowness of movement and tremors. Currently, surgical treatment or Deep Brain Stimulation (DBS) surgery is available in Malaysia, but the treatment is costly.
Living with the treatment – its side effects
The side effects generally associated with Parkinson’s drugs are nausea, vomiting, and dizziness. The most serious side effects are involuntary body movements, which usually manifest as uncontrollable and unpredictable jerky body movements, and are triggered via prolonged use of levodopa.
The problem about the involuntary body movements is their irreversibility – once they have started, they persist for life. They are also an important cause of social stigma, as Parkinson’s patients frequently feel embarrassed by the stares of the general public – the involuntary body movements make Parkinson’s patients look “odd”.
As such, levodopa is best avoided during the early stages of Parkinson’s in order to prevent the development of the involuntary body movements or dyskinesia.
This has led to the suggestion that dopamine agonists should be used for initial treatment in newly-diagnosed Parkinson’s patients. A dopamine agonist drug has longer duration of effect on brain cells than levodopa and reduces the “wearing off” phenomenon while improving the 24-hour control of symptoms when taken regularly.
Dopamine agonist drugs can cause side-effects such as nausea, dizziness, sleepiness (sleep attacks), confusion, and low blood pressure. Fortunately, new medications like ropinirole appear to have a significantly lower frequency of side-effects and perhaps future drugs will lower the frequency even more.
Still, it is very important for Parkinson’s patients to follow a schedule of medications strictly, especially the timing of medication. Medications have to be taken at regular intervals in order to avoid or minimise the “on” and “off” periods.
When medication wears off, patients will experience stiffness and trembles – the “off” period. These fluctuations occur during the more advanced stages of the disease when the effect of medications is no longer sustained or consistent.
Other possible treatments
The discovery of Deep Brain Stimulation (DBS) surgery in the late 1990s was a major breakthrough in the treatment of Parkinson’s. The improvement in the symptoms of Parkinson’s following DBS surgery is dramatic. This surgery is suitable for those in the advanced stages of Parkinson’s after the effects of medications have diminished.
Apart from DBS surgery, there have not been many breakthroughs in treatment for Parkinson’s disease.
Stem cell treatment (through transplantation) for Parkinson’s has received a lot of attention recently. However, stem cell treatments overseas have not been proven effective. Many technical issues still need to be resolved before it can be recommended to Parkinson’s patients.
There are too many issues attached to stem cell treatment, namely on ensuring the survival of transplanted brain cells and the use of aborted human foetus. The procedure itself is also very expensive as it requires the highest level of technology and medical expertise.
THE most common reaction for most people first diagnosed with Parkinson’s disease would be one of disbelief. This would quickly progress to denial. Family members and friends would also be equally affected by the news.
It would be understandable if the first question that crops up is: “How are we going to cope?”
That denial kicks in almost immediately for many Parkinson’s sufferers and their families is a given. However, getting over the denial is a crucial if a sufferer and caregiver want to cope with the consequences of a positive diagnosis of this disease.
So it is paramount to learn as much about the disease, and understand how treatment can help sufferers improve their quality of life.
What is Parkinson’s disease?
Parkinson’s disease (PD) is a brain disorder that occurs when certain nerve cells or neurons in the brain die or become impaired. When this happens, these cells no longer produce a chemical called dopamine, which facilitate the smooth, coordinated function of our muscles. When about 80% of these neurons die or get damaged, that’s when Parkinson’s makes an appearance.
One of the misconceptions about Parkinson’s disease is that it’s a disease of old age. It’s not. Just ask Michael J. Fox, who was diagnosed with the disease when he was 30 years old.
The tell-tale signs include tremors, slowness of movement, rigidity, difficulty with balance, small, cramped handwriting, stiff facial expressions, a shuffling walk, muffled speech, and depression.
There is a misconception that Parkinson’s is an old-age disease but, in fact, about 15% of people diagnosed with Parkinson’s come from the 50-year-old and below age bracket. The disease strikes anyone regardless of gender, age, social status, culture, or profession.
And it gets worse as the process of diagnosing the disease is difficult, at best, as there is no one simple test when it comes to confirming the presence of Parkinson’s. A doctor can only arrive at a diagnosis for the condition only through a patient’s medical history and a series of physical examinations.
Magnetic resonance imaging (MRIs) and blood tests can help rule out other conditions that have similar symptoms, but those who are suspected to be suffering from Parkinson’s should seek out a neurologist who specialises in Parkinson’s Disease.
Parkinson’s is also not just a movement disorder as patients can also suffer from a long list of non-motor symptoms such as depression, confusion, hallucination, anxiety, and dementia as well as intestinal disorders, loss of sense of smell, and sleep disturbances.
It is also believed that several non-motor symptoms such as loss of sense of smell, depression, sleep disorders, fatigue, anxiety, and constipation may precede the motor symptoms of Parkinson’s by a few years, and thus can be considered as early symptoms of the disease.
Can it be treated?
Parkinson’s remains an incurable illness. Due to the progressive loss of brain cells, Parkinson’s progresses with time, resulting in gradual and inevitable deterioration of the initial motor symptoms. As the illness advances, the non-motor symptoms such as psychiatric disorders also become more frequent, especially during the advanced stage of illness.
In addition, many patients also develop involuntary body movements and suffer reduced effects of medications towards the later stage of the illness. All these complications result in long-term disability in Parkinson’s patients and in almost all aspects of life – physical, mental, occupational, and social.
There are, however, a number of effective medicines that help ease the symptoms of the disease. Most symptoms are caused by a lack of dopamine, and medicines most commonly used will attempt to either replace or mimic dopamine, which help to reduce tremors, lessen rigidity, and improves slowness of movements associated with Parkinson’s disease. Several new medicines are also being studied that may slow the progression of the disease. Many promise to improve the lives of people with the disease.
Medications used in the treatment of Parkinson’s disease in Malaysia
When it comes to treating Parkinson’s disease, there are different classes of drugs used at different stages of the disease – most often in combination or sometimes on its own depending on the severity of the condition, the age of the sufferer, and tolerance to medication. Initial treatment is individualised.
The classes of drugs used are levodopa, dopamine agonists, COMT-inhibitors, MAO-B-inhibitors, and anticholinergic drugs. Constant monitoring by the neurologist, patient and caregiver is crucial in determining the right dosages and types of medications to treat the condition. And each case is unique.
For early (initial) to moderate stages of Parkinson’s (five to 10 years), most patients (especially younger Parkinson’s patients) are prescribed dopamine agonist drugs such as ropinirole and can live a reasonably good quality of life while delaying the onset of motor complications or dyskinesia and the need for levodopa treatment. Levodopa will be used at a more advanced stage.
Dopamine agonist medications help to enhance the activity of dopamine in the brain to relief the symptoms of Parkinson’s. As the disease advances, they can also be used to treat motor fluctuations.
However, as the physical disability of Parkinson’s patients become more severe with time – after 10-15 years – many of them have difficulty carrying out daily activities despite taking maximum medications – a combination of many of the classes of medications.
Also, it has to be emphasised that Parkinson’s patients can only expect up to 90% level of improvement even with the best medications. Parkinson’s treatment cannot completely compensate for the dopamine deficiency in the brain. It is important that Parkinson’s patients be realistic in their expectations – there are no ideal medications for this illness. When the illness advances, and when patients’ symptoms are no longer well-controlled with medications (e.g. uncontrollable tremors), brain surgery can be effective in relieving the main symptoms of Parkinson’s such as slowness of movement and tremors. Currently, surgical treatment or Deep Brain Stimulation (DBS) surgery is available in Malaysia, but the treatment is costly.
Living with the treatment – its side effects
The side effects generally associated with Parkinson’s drugs are nausea, vomiting, and dizziness. The most serious side effects are involuntary body movements, which usually manifest as uncontrollable and unpredictable jerky body movements, and are triggered via prolonged use of levodopa.
The problem about the involuntary body movements is their irreversibility – once they have started, they persist for life. They are also an important cause of social stigma, as Parkinson’s patients frequently feel embarrassed by the stares of the general public – the involuntary body movements make Parkinson’s patients look “odd”.
As such, levodopa is best avoided during the early stages of Parkinson’s in order to prevent the development of the involuntary body movements or dyskinesia.
This has led to the suggestion that dopamine agonists should be used for initial treatment in newly-diagnosed Parkinson’s patients. A dopamine agonist drug has longer duration of effect on brain cells than levodopa and reduces the “wearing off” phenomenon while improving the 24-hour control of symptoms when taken regularly.
Dopamine agonist drugs can cause side-effects such as nausea, dizziness, sleepiness (sleep attacks), confusion, and low blood pressure. Fortunately, new medications like ropinirole appear to have a significantly lower frequency of side-effects and perhaps future drugs will lower the frequency even more.
Still, it is very important for Parkinson’s patients to follow a schedule of medications strictly, especially the timing of medication. Medications have to be taken at regular intervals in order to avoid or minimise the “on” and “off” periods.
When medication wears off, patients will experience stiffness and trembles – the “off” period. These fluctuations occur during the more advanced stages of the disease when the effect of medications is no longer sustained or consistent.
Other possible treatments
The discovery of Deep Brain Stimulation (DBS) surgery in the late 1990s was a major breakthrough in the treatment of Parkinson’s. The improvement in the symptoms of Parkinson’s following DBS surgery is dramatic. This surgery is suitable for those in the advanced stages of Parkinson’s after the effects of medications have diminished.
Apart from DBS surgery, there have not been many breakthroughs in treatment for Parkinson’s disease.
Stem cell treatment (through transplantation) for Parkinson’s has received a lot of attention recently. However, stem cell treatments overseas have not been proven effective. Many technical issues still need to be resolved before it can be recommended to Parkinson’s patients.
There are too many issues attached to stem cell treatment, namely on ensuring the survival of transplanted brain cells and the use of aborted human foetus. The procedure itself is also very expensive as it requires the highest level of technology and medical expertise.
Muhammad Ali attends opening of Parkinson's center
Boxing legend Muhammad Ali made a rare public appearance Thursday at the opening of a newly expanded treatment center for Parkinson's disease.
Ali, 67, and his wife, Lonnie, regularly donate to the Barrow Neurological Foundation and are largely responsible for the more than $2 million that the Muhammad Ali Parkinson Center gets every year from Celebrity Fight Night, a glitzy Phoenix gala that raises funds and awareness for the illness, said Mary Jane Crist, the foundation's CEO. The Parkinson's center at the Barrow Neurological Institute first opened in 1997 with the ability to treat about 60 patients a year. Officials say the expansion has doubled its size and that it now has six doctors and expects to treat 1,600 new patients a year -- an evolution largely due to Ali's involvement.
The former heavyweight champ, who was diagnosed with the brain disorder in 1984, receives some of his treatment at the center. He retired in 1981 from a career during which he won the world heavyweight championship three different times.
Center officials say the facility is now the most comprehensive in the nation for the treatment of Parkinson's. It now has medical, rehabilitation, research, and social and educational services in one location.
Center officials say the idea is for a Parkinson's patient to get all the services and treatment they need in one spot, instead of having to go to different locations.
Lonnie Ali said that's very important for people who have a tough time getting around, adding that it makes living day-to-day easier. The disorder causes tremors, slowed movement, and muffled speech.
Abraham Lieberman, the center's director, said doctors and other staff spend hours with new patients, explaining the disease and offering comfort.
"When they leave the office, they're not scared out of their minds that they're going to be in a wheelchair or they're going to die or something terrible is going to happen to them," he said. "If you tell people the truth and you explain it carefully and people know what they're confronting, most people can deal with this."
He said he couldn't say enough about what Ali means to the center, especially for patients.
"I tell patients, 'Look, Muhammad Ali was the greatest athlete in the 20th century. He's got Parkinson's and he's not desperate, he's not dejected, he's not depressed,"' Lieberman said. "The center is named for him because he's such a recognizable figure and he's given so much inspiration to people."
Ali toured the center with his wife and his sister-in-law, who held his hands. The three stopped frequently to look at some of the most memorable images of Ali in large frames along a hallway, including one of him with a ferocious look on his face towering over downed opponent Charles "Sonny" Liston.
The photos are a reflection of his life, Lonnie Ali said.
"I'm so excited for patients to come through this door," she said. "The environs are very comforting and calming and welcoming ... Just because you're in a hospital and you're here for treatment doesn't mean it has to look like a hospital."
Ali, 67, and his wife, Lonnie, regularly donate to the Barrow Neurological Foundation and are largely responsible for the more than $2 million that the Muhammad Ali Parkinson Center gets every year from Celebrity Fight Night, a glitzy Phoenix gala that raises funds and awareness for the illness, said Mary Jane Crist, the foundation's CEO. The Parkinson's center at the Barrow Neurological Institute first opened in 1997 with the ability to treat about 60 patients a year. Officials say the expansion has doubled its size and that it now has six doctors and expects to treat 1,600 new patients a year -- an evolution largely due to Ali's involvement.
The former heavyweight champ, who was diagnosed with the brain disorder in 1984, receives some of his treatment at the center. He retired in 1981 from a career during which he won the world heavyweight championship three different times.
Center officials say the facility is now the most comprehensive in the nation for the treatment of Parkinson's. It now has medical, rehabilitation, research, and social and educational services in one location.
Center officials say the idea is for a Parkinson's patient to get all the services and treatment they need in one spot, instead of having to go to different locations.
Lonnie Ali said that's very important for people who have a tough time getting around, adding that it makes living day-to-day easier. The disorder causes tremors, slowed movement, and muffled speech.
Abraham Lieberman, the center's director, said doctors and other staff spend hours with new patients, explaining the disease and offering comfort.
"When they leave the office, they're not scared out of their minds that they're going to be in a wheelchair or they're going to die or something terrible is going to happen to them," he said. "If you tell people the truth and you explain it carefully and people know what they're confronting, most people can deal with this."
He said he couldn't say enough about what Ali means to the center, especially for patients.
"I tell patients, 'Look, Muhammad Ali was the greatest athlete in the 20th century. He's got Parkinson's and he's not desperate, he's not dejected, he's not depressed,"' Lieberman said. "The center is named for him because he's such a recognizable figure and he's given so much inspiration to people."
Ali toured the center with his wife and his sister-in-law, who held his hands. The three stopped frequently to look at some of the most memorable images of Ali in large frames along a hallway, including one of him with a ferocious look on his face towering over downed opponent Charles "Sonny" Liston.
The photos are a reflection of his life, Lonnie Ali said.
"I'm so excited for patients to come through this door," she said. "The environs are very comforting and calming and welcoming ... Just because you're in a hospital and you're here for treatment doesn't mean it has to look like a hospital."
Monday, December 7, 2009
Worm could offer Parkinson's clue
Scientists believe that worms could hold the key to why some people develop Parkinson's Disease.
Worms share 50% of their genes with humans, including those involved with inherited Parkinson's.
Dundee University researchers will study a simple worm called C. elegans to try to work out why the condition causes patient's brain cells to die.
The Parkinson's Disease Society has given the university £190,000 to carry out the research.
Eventual cure
There are about 120,000 people with Parkinson's in the UK. In up to 5% of those cases, the disease is believed to be directly inherited.
Parkinson's is a progressive neurological condition affecting movements such as walking, talking and writing. It occurs as a result of a loss of nerve cells in the brain.
Dr Anton Gartner, who is leading the study, said: "Research leading to an eventual cure for Parkinson' s disease is a daunting task and requires a very broad and multidisciplinary approach.
"I am grateful to the Parkinson's society to recognise this and to so generously support our research."
It's fascinating that such a simple animal as a worm can be an excellent model for Parkinson's researchers
Dr Kieran Breen
Parkinson's Disease Society
Worms will be used in the study as they are one of the simplest organisms with a nervous system.
The way worms' nerve cells communicate with each other is also similar to how it works in humans.
Several genes, including one known as LRRK2, have been linked to the hereditary form of Parkinson's Disease.
Dr Gartner's team want to understand how changes or mutations in this gene lead to the development of Parkinson's - and how drugs could stop the damage that these mutations cause to nerve cells.
Dr Kieran Breen, from the Parkinson's Disease Society, said: "It's fascinating that such a simple animal as a worm can be an excellent model for Parkinson's researchers to study what happens in specific nerve cells.
"We are delighted to be funding this research with Dr Gartner in Dundee. It will help us to understand better what causes nerve cells to die in Parkinson's, and will help us to develop new treatments for the condition."
Worms share 50% of their genes with humans, including those involved with inherited Parkinson's.
Dundee University researchers will study a simple worm called C. elegans to try to work out why the condition causes patient's brain cells to die.
The Parkinson's Disease Society has given the university £190,000 to carry out the research.
Eventual cure
There are about 120,000 people with Parkinson's in the UK. In up to 5% of those cases, the disease is believed to be directly inherited.
Parkinson's is a progressive neurological condition affecting movements such as walking, talking and writing. It occurs as a result of a loss of nerve cells in the brain.
Dr Anton Gartner, who is leading the study, said: "Research leading to an eventual cure for Parkinson' s disease is a daunting task and requires a very broad and multidisciplinary approach.
"I am grateful to the Parkinson's society to recognise this and to so generously support our research."
It's fascinating that such a simple animal as a worm can be an excellent model for Parkinson's researchers
Dr Kieran Breen
Parkinson's Disease Society
Worms will be used in the study as they are one of the simplest organisms with a nervous system.
The way worms' nerve cells communicate with each other is also similar to how it works in humans.
Several genes, including one known as LRRK2, have been linked to the hereditary form of Parkinson's Disease.
Dr Gartner's team want to understand how changes or mutations in this gene lead to the development of Parkinson's - and how drugs could stop the damage that these mutations cause to nerve cells.
Dr Kieran Breen, from the Parkinson's Disease Society, said: "It's fascinating that such a simple animal as a worm can be an excellent model for Parkinson's researchers to study what happens in specific nerve cells.
"We are delighted to be funding this research with Dr Gartner in Dundee. It will help us to understand better what causes nerve cells to die in Parkinson's, and will help us to develop new treatments for the condition."
Man walks for Parkinson's awareness
By AnneMarie Knepper, Albany Democrat-Herald
Lee Grimm said he was a metal worker for 25 years. A diagnosis of Parkinson’s disease made that kind of work impossible, so he decided to take a walk.
Grimm said he can’t work anymore and wanted to do something constructive with his time, so he is walking to help raise awareness about Parkinson’s disease and the Michael J. Fox Foundation.
That was a year and a half ago. Grimm, 45, and his boxer, Rocky, 4, average 10 miles a day, depending on Grimm’s Parkinson’s.
Rocky, a service dog, helps steady him, especially when he needs to get up from bending or kneeling.
“I can’t live without him,” Grimm said of his canine companion.
The duo began their journey in Laramie, Wyo.
Grimm said his address book is as thick as a New York phone book, with names of the many friends he met during his quarter century of metal working. He is finally taking them up on offers to stop by if he’s ever in the area.
The website couchsurfing.com is another great way to find shelter, Grimm said, although he prefers to sleep outdoors.
The trekker has little baggage. He tows 200 pounds of supplies including two weeks of food, water and kibble, a laptop computer and some camping equipment, in a modified bike trailer.
Grimm’s next stop is Eugene and he would like to be in San Francisco by Christmas. Portland, Maine, is his ultimate destination — by way of Oklahoma.
He said the people he has met along the way have been generous, “Old hippies have been picking me up.” But he has also had 63 encounters with law enforcement, most recently after pitching a tent in Crawfordsville.
Lee Grimm said he was a metal worker for 25 years. A diagnosis of Parkinson’s disease made that kind of work impossible, so he decided to take a walk.
Grimm said he can’t work anymore and wanted to do something constructive with his time, so he is walking to help raise awareness about Parkinson’s disease and the Michael J. Fox Foundation.
That was a year and a half ago. Grimm, 45, and his boxer, Rocky, 4, average 10 miles a day, depending on Grimm’s Parkinson’s.
Rocky, a service dog, helps steady him, especially when he needs to get up from bending or kneeling.
“I can’t live without him,” Grimm said of his canine companion.
The duo began their journey in Laramie, Wyo.
Grimm said his address book is as thick as a New York phone book, with names of the many friends he met during his quarter century of metal working. He is finally taking them up on offers to stop by if he’s ever in the area.
The website couchsurfing.com is another great way to find shelter, Grimm said, although he prefers to sleep outdoors.
The trekker has little baggage. He tows 200 pounds of supplies including two weeks of food, water and kibble, a laptop computer and some camping equipment, in a modified bike trailer.
Grimm’s next stop is Eugene and he would like to be in San Francisco by Christmas. Portland, Maine, is his ultimate destination — by way of Oklahoma.
He said the people he has met along the way have been generous, “Old hippies have been picking me up.” But he has also had 63 encounters with law enforcement, most recently after pitching a tent in Crawfordsville.
Tuesday, November 24, 2009
Experts warn against stem cell tourism
Stem cell specialists are warning of the dangers of medical tourism, saying unproven stem cell therapy overseas could leave patients worse off.
For many people with conditions like spinal injury, multiple sclerosis, motor neuron or Parkinson's disease, signing up for clinically unproven, overseas stem cell therapy is worth the risk.
But earlier this year, a medical journal reported a case of an Israeli teenager who developed brain tumours after experimental injections at a Russian clinic.
There have also been reports of patients contracting meningitis after treatments in China.
The Australian Stem Cell Centre will be releasing a handbook next month to help patients analyse radial stem cell treatments abroad.
Bill's story
Bill Boras from Melbourne was left a quadriplegic after a car accident in 2002. The 36-year-old, who used to enjoy adventure sports, was confined to a wheelchair which he controlled with his chin.
In a bid to regain some movement, he signed up for radical stem cell therapy in China which uses cells from aborted foetuses to repair damaged spinal cord tissue.
"[The therapy] improved me... with a bit of therapy I came back and changed my wheelchair to a manual wheelchair and I'm driving it basically now," he said.
Mr Boras says he is now planning on a course of stem cell injections in Hong Kong next year to increase sensation in his body.
His only information on it comes from the clinic's website, but with similar treatments years off from even pre-clinical trials in Australia, he says he does not see an alternative.
"It's not easy sitting down and being taken care of 24/7, not easy at all," he said.
"I don't know if more harm can come to what I am at the moment, I can only hope it comes out good."
Risky treatments
But stem cell experts are warning patients against taking the risk with radical treatments abroad.
Australian Stem Cell Centre clinical adviser Dr Kirsten Herbert says in a study of seven patients with spinal cord injuries who had stem cell treatment in China, three contracted meningitis - one with serious complications.
And Dr Herbert says cancer is a rare but possible side effect of the experimental therapy.
She cites a case of a 13-year-old Israeli boy, taken to Moscow for treatment involving the injection of foetal neural cells into his brain and spinal cord.
"He had two treatments in 2002 and 2004 but then in 2005, he developed brain tumours at both sites of injections - one in his brain and one down at the base of his spinal cord," she said.
"So it's the first in the literature that really definitively showed that tumour growth could be possible from stem cell treatments."
Dr Herbert is urging anyone considering unproven treatments to first be armed with information and questions.
"We have concerns about the use of bovine products, or products from cows being used in stem culture methods which then may increase the risk of acquiring a disease like Creutzfeldt-Jakob disease, which is also known as mad cow disease. And then are those cells tested?" she said.
"What viruses could potentially have infected those cells? HIV, Hepatitis B, Hepatitis C and some of the other related viruses? And also have those cells been tested for their capacity to form tumours?"
Hidden extras
She says questions must also be asked about hidden costs, medications, post-operative support and whether the clinic has published any data.
Dr Herbert is urging people to be wary of international clinics that rely on fancy websites and individual testimonials.
"If their main claim to success if through patient testimonials rather than published data, that raises key questions about why have they not published these results," she said.
"Because essentially it is perfectly easy to make uncorroborated claims on the internet and individual patient testimonials, as exciting as they may sound, can't be proven or disproven."
The Australian Stem Cell Centre will be releasing a patient handbook next month to help people analyse overseas stem cell treatments.
Patient advocacy groups have met in Canberra to discuss Australia's clinical trials, government funding and how to protect people from being emotionally and financially exploited.
Dr Herbert says the numbers of inquiries into radial overseas treatments are rising, but says that is not necessarily a bad thing.
"I'm actually heartened by the number of people who are asking, because I think it illustrates how well informed patients are and that a lot of them carry a healthy level of cynicism that they would even ask," she said.
"Whereas stem cell therapy holds huge promise and clinical trials are ongoing under very controlled circumstances, we need to proceed with the appropriate level of caution so that unforeseen complications happen as rarely as possible."
For many people with conditions like spinal injury, multiple sclerosis, motor neuron or Parkinson's disease, signing up for clinically unproven, overseas stem cell therapy is worth the risk.
But earlier this year, a medical journal reported a case of an Israeli teenager who developed brain tumours after experimental injections at a Russian clinic.
There have also been reports of patients contracting meningitis after treatments in China.
The Australian Stem Cell Centre will be releasing a handbook next month to help patients analyse radial stem cell treatments abroad.
Bill's story
Bill Boras from Melbourne was left a quadriplegic after a car accident in 2002. The 36-year-old, who used to enjoy adventure sports, was confined to a wheelchair which he controlled with his chin.
In a bid to regain some movement, he signed up for radical stem cell therapy in China which uses cells from aborted foetuses to repair damaged spinal cord tissue.
"[The therapy] improved me... with a bit of therapy I came back and changed my wheelchair to a manual wheelchair and I'm driving it basically now," he said.
Mr Boras says he is now planning on a course of stem cell injections in Hong Kong next year to increase sensation in his body.
His only information on it comes from the clinic's website, but with similar treatments years off from even pre-clinical trials in Australia, he says he does not see an alternative.
"It's not easy sitting down and being taken care of 24/7, not easy at all," he said.
"I don't know if more harm can come to what I am at the moment, I can only hope it comes out good."
Risky treatments
But stem cell experts are warning patients against taking the risk with radical treatments abroad.
Australian Stem Cell Centre clinical adviser Dr Kirsten Herbert says in a study of seven patients with spinal cord injuries who had stem cell treatment in China, three contracted meningitis - one with serious complications.
And Dr Herbert says cancer is a rare but possible side effect of the experimental therapy.
She cites a case of a 13-year-old Israeli boy, taken to Moscow for treatment involving the injection of foetal neural cells into his brain and spinal cord.
"He had two treatments in 2002 and 2004 but then in 2005, he developed brain tumours at both sites of injections - one in his brain and one down at the base of his spinal cord," she said.
"So it's the first in the literature that really definitively showed that tumour growth could be possible from stem cell treatments."
Dr Herbert is urging anyone considering unproven treatments to first be armed with information and questions.
"We have concerns about the use of bovine products, or products from cows being used in stem culture methods which then may increase the risk of acquiring a disease like Creutzfeldt-Jakob disease, which is also known as mad cow disease. And then are those cells tested?" she said.
"What viruses could potentially have infected those cells? HIV, Hepatitis B, Hepatitis C and some of the other related viruses? And also have those cells been tested for their capacity to form tumours?"
Hidden extras
She says questions must also be asked about hidden costs, medications, post-operative support and whether the clinic has published any data.
Dr Herbert is urging people to be wary of international clinics that rely on fancy websites and individual testimonials.
"If their main claim to success if through patient testimonials rather than published data, that raises key questions about why have they not published these results," she said.
"Because essentially it is perfectly easy to make uncorroborated claims on the internet and individual patient testimonials, as exciting as they may sound, can't be proven or disproven."
The Australian Stem Cell Centre will be releasing a patient handbook next month to help people analyse overseas stem cell treatments.
Patient advocacy groups have met in Canberra to discuss Australia's clinical trials, government funding and how to protect people from being emotionally and financially exploited.
Dr Herbert says the numbers of inquiries into radial overseas treatments are rising, but says that is not necessarily a bad thing.
"I'm actually heartened by the number of people who are asking, because I think it illustrates how well informed patients are and that a lot of them carry a healthy level of cynicism that they would even ask," she said.
"Whereas stem cell therapy holds huge promise and clinical trials are ongoing under very controlled circumstances, we need to proceed with the appropriate level of caution so that unforeseen complications happen as rarely as possible."
New options for Parkinson's treatment
By: Kerstin Kealy, WDAY
Patients with Parkinson’s here in the Valley have a new option for treatment. MeritCare has started the L-S-V-T Big program and just a few months in, it's making a big difference in the lives of patients. Last night, our friend, former WDAY Anchor Marv Bossart shared his courageous story as he battles this difficult disease. Tonight, how Big and the L-S-V-T Loud program are giving Marv back and others like him what Parkinson's threatens to steal away.
As a News Anchor for 42 years, Marv Bossart was known for his voice. 7 years after a diagnosis of Parkinson’s, he is fighting to keep it.
“I hate the fact that my voice is fading, I made my living on my voice.”
He's among 89% of those with Parkinson’s who have problems with speech.
“His biggest complaint coming in to see me was that he was losing himself in crowds in people and not being heard and not understanding that.”
The Loud program is an intensive month long speech therapy that recalibrates your brain, teaching you to think loud and talk loud. It's showing dramatic results.
“You can see in one day, day one progress.”
From Loud to Big, Marv re-learns what many of us take for granted. Things like getting up from a chair, reaching, and walking.
“Marv has one of the best attitudes I’ve ever seen.”
Since the program started at MeritCare in May, Physical Therapist Laura Guse has used big to help Parkinson’s patients walk faster with bigger steps and have better balance, a serious safety issue for those with Parkinson’s.
“I was getting along just fine and one day all of a sudden I fell in our driveway and I fell hard.”
Laura says the results from big have shown twice the improvement for Parkinson’s patients than traditional physical therapy.
“They really feel empowered over their disease and they have a lot more confidence in the way that they move, they feel less fearful of falling.”
Marv's doctor, MeritCare Neurologist Dr. Tanya Harlow, says up to 70 percent of her patients here at NRI have Parkinson's.
“I could spend my entire time as a physician just seeing Parkinson’s disease because there are that any patients.”
She and Marv talked about another option for treatment, deep brain stimulation, but Marv decided it wasn't worth the risks, instead opting for physical therapy and medication.
“He’s becoming more advanced as far as his Parkinson’s disease goes so the motor complications I mentioned before as far as the dyskinesias are starting to become more problematic for him.”
Dr. Harlow says the key to one day curing this brain disorder is figure out what causes it. Something she is hopeful will happen in the next decade.
“I think it's going to be a breakthrough. There's so much research going in I’m hoping it's going to be sooner rather than later.
For now the key to fighting this disease, something Marv knows well, staying active.
“I’m not going to give up without a fight of some kind.”
Patients with Parkinson’s here in the Valley have a new option for treatment. MeritCare has started the L-S-V-T Big program and just a few months in, it's making a big difference in the lives of patients. Last night, our friend, former WDAY Anchor Marv Bossart shared his courageous story as he battles this difficult disease. Tonight, how Big and the L-S-V-T Loud program are giving Marv back and others like him what Parkinson's threatens to steal away.
As a News Anchor for 42 years, Marv Bossart was known for his voice. 7 years after a diagnosis of Parkinson’s, he is fighting to keep it.
“I hate the fact that my voice is fading, I made my living on my voice.”
He's among 89% of those with Parkinson’s who have problems with speech.
“His biggest complaint coming in to see me was that he was losing himself in crowds in people and not being heard and not understanding that.”
The Loud program is an intensive month long speech therapy that recalibrates your brain, teaching you to think loud and talk loud. It's showing dramatic results.
“You can see in one day, day one progress.”
From Loud to Big, Marv re-learns what many of us take for granted. Things like getting up from a chair, reaching, and walking.
“Marv has one of the best attitudes I’ve ever seen.”
Since the program started at MeritCare in May, Physical Therapist Laura Guse has used big to help Parkinson’s patients walk faster with bigger steps and have better balance, a serious safety issue for those with Parkinson’s.
“I was getting along just fine and one day all of a sudden I fell in our driveway and I fell hard.”
Laura says the results from big have shown twice the improvement for Parkinson’s patients than traditional physical therapy.
“They really feel empowered over their disease and they have a lot more confidence in the way that they move, they feel less fearful of falling.”
Marv's doctor, MeritCare Neurologist Dr. Tanya Harlow, says up to 70 percent of her patients here at NRI have Parkinson's.
“I could spend my entire time as a physician just seeing Parkinson’s disease because there are that any patients.”
She and Marv talked about another option for treatment, deep brain stimulation, but Marv decided it wasn't worth the risks, instead opting for physical therapy and medication.
“He’s becoming more advanced as far as his Parkinson’s disease goes so the motor complications I mentioned before as far as the dyskinesias are starting to become more problematic for him.”
Dr. Harlow says the key to one day curing this brain disorder is figure out what causes it. Something she is hopeful will happen in the next decade.
“I think it's going to be a breakthrough. There's so much research going in I’m hoping it's going to be sooner rather than later.
For now the key to fighting this disease, something Marv knows well, staying active.
“I’m not going to give up without a fight of some kind.”
Sunday, November 22, 2009
Lonnie Ali Shares A Parkinson's Disease Caregiver's point of view
Hope that floats like a butterfly
Lonnie Ali was six years old and had just gotten home from school in Louisville, Kentucky, when she saw a crowd of boys gathered around a handsome young man in a white shirt, a bow tie, and black dress pants. “Look,” said her mother, standing in the doorway, “that’s Cassius Clay.”
Clay, who would soon claim the first of three heavyweight boxing titles and adopt the Muslim name Muhammad Ali, made a point of calling the shy little girl over. And from then on, she recalls, whenever he visited his mother across the street, he stopped by her house as well. “He was like a big brother,” she says. “He’d sit and talk, and I’d believe what he said before I’d believe my father. I figured my father would tell me stuff just because he wanted to protect me, but Muhammad would tell it to me the way it was.”
They remained friends, even as he became a world champion and she went off to college, where she got a psychology degree and then an MBA. When she was 17, Lonnie says, she realized that she would marry him someday—“I knew it was fate,” she says. Twelve years later, she did, becoming the boxer’s fourth wife. Muhammad had recently been diagnosed with Parkinson’s disease, but the diagnosis didn’t faze Lonnie. “I knew the man, not the celebrity,” she says. “That’s who I loved. And he knew I would always be in his corner.”
For a long time, Muhammad’s disease barely slowed him down. Lonnie was more of a care partner than caregiver, nudging her husband to take his medicine and accompanying him to doctors’ appointments. But gradually, his symptoms became more intrusive. One turning point occurred about 15 years ago, when the couple were out to dinner in Boston. “Muhammad went to put food in his mouth and he froze,” she recalls—temporary immobility is characteristic of the disease. Another was when the famously animated boxer became stone-faced, also a classic sign of the disease. “Then I knew I had some challenges that I really needed to deal with and learn about,” Lonnie says.
The challenges have been practical, emotional, and psychological as much as medical. Lonnie has had to recognize her own limitations: At one point five years ago, as she cared for her husband, mothered their teenage son, Asaad, and ran a business, among other things, she felt so unfocused, she thought she had attention deficit disorder. “I went to the doctor and fell asleep in the waiting room,” she says. “The doctor said, ‘You don’t have ADD. You’re sleep-deprived.’”
She’s also had to learn to accept what she can’t control. Muhammad is still a big man, with piercing eyes and muscular arms, the result of working out every day. But his disease means that this man of unparalleled physical gifts now walks haltingly; once famous for his banter, he often sits in silence. “I’ve been with him for so long, I can basically look at him and tell what he wants and needs,” Lonnie says.
Yet the illness can steal only so much, and Muhammad still has plenty he wants to do. A quarter of a century into his struggle with Parkinson’s disease, he’s taking piano lessons. Most important, this lifelong supporter of humanitarian causes still feels he has a mission to help other people. Early in his disease, Muhammad shied away from the spotlight. “He used to play to the camera, but the camera was no longer his friend,” Lonnie says. But then he made an appearance with Michael J. Fox, also a Parkinson’s sufferer, who has been open about his own movement problems. “I think he thought, If Michael can do it, I can do it.”
Now Muhammad Ali doesn’t care what people think when they see him. Early this year, in an essay for National Public Radio’s “This I Believe,” the boxing legend wrote about carrying the Olympic torch to light the cauldron at the 1996 Summer Games in Atlanta and realizing that his tremors had taken over. “I heard a rumble in the stadium that became a pounding roar and then turned into a deafening applause,” he wrote. He understood then that Parkinson’s had not defeated him.
“There’s still a lot for me to learn from him, and I never forget that,” Lonnie Ali says. “Muhammad was the epitome of strength and beauty, but could someone with physical challenges really relate to him? Probably not. But now they can identify with him. We used to get letters all the time about people with Parkinson’s who wouldn’t go out of the house, but because they saw Muhammad out, now they go out.
“He still has that power to inspire people—without even opening his mouth.”
Lonnie Ali was six years old and had just gotten home from school in Louisville, Kentucky, when she saw a crowd of boys gathered around a handsome young man in a white shirt, a bow tie, and black dress pants. “Look,” said her mother, standing in the doorway, “that’s Cassius Clay.”
Clay, who would soon claim the first of three heavyweight boxing titles and adopt the Muslim name Muhammad Ali, made a point of calling the shy little girl over. And from then on, she recalls, whenever he visited his mother across the street, he stopped by her house as well. “He was like a big brother,” she says. “He’d sit and talk, and I’d believe what he said before I’d believe my father. I figured my father would tell me stuff just because he wanted to protect me, but Muhammad would tell it to me the way it was.”
They remained friends, even as he became a world champion and she went off to college, where she got a psychology degree and then an MBA. When she was 17, Lonnie says, she realized that she would marry him someday—“I knew it was fate,” she says. Twelve years later, she did, becoming the boxer’s fourth wife. Muhammad had recently been diagnosed with Parkinson’s disease, but the diagnosis didn’t faze Lonnie. “I knew the man, not the celebrity,” she says. “That’s who I loved. And he knew I would always be in his corner.”
For a long time, Muhammad’s disease barely slowed him down. Lonnie was more of a care partner than caregiver, nudging her husband to take his medicine and accompanying him to doctors’ appointments. But gradually, his symptoms became more intrusive. One turning point occurred about 15 years ago, when the couple were out to dinner in Boston. “Muhammad went to put food in his mouth and he froze,” she recalls—temporary immobility is characteristic of the disease. Another was when the famously animated boxer became stone-faced, also a classic sign of the disease. “Then I knew I had some challenges that I really needed to deal with and learn about,” Lonnie says.
The challenges have been practical, emotional, and psychological as much as medical. Lonnie has had to recognize her own limitations: At one point five years ago, as she cared for her husband, mothered their teenage son, Asaad, and ran a business, among other things, she felt so unfocused, she thought she had attention deficit disorder. “I went to the doctor and fell asleep in the waiting room,” she says. “The doctor said, ‘You don’t have ADD. You’re sleep-deprived.’”
She’s also had to learn to accept what she can’t control. Muhammad is still a big man, with piercing eyes and muscular arms, the result of working out every day. But his disease means that this man of unparalleled physical gifts now walks haltingly; once famous for his banter, he often sits in silence. “I’ve been with him for so long, I can basically look at him and tell what he wants and needs,” Lonnie says.
Yet the illness can steal only so much, and Muhammad still has plenty he wants to do. A quarter of a century into his struggle with Parkinson’s disease, he’s taking piano lessons. Most important, this lifelong supporter of humanitarian causes still feels he has a mission to help other people. Early in his disease, Muhammad shied away from the spotlight. “He used to play to the camera, but the camera was no longer his friend,” Lonnie says. But then he made an appearance with Michael J. Fox, also a Parkinson’s sufferer, who has been open about his own movement problems. “I think he thought, If Michael can do it, I can do it.”
Now Muhammad Ali doesn’t care what people think when they see him. Early this year, in an essay for National Public Radio’s “This I Believe,” the boxing legend wrote about carrying the Olympic torch to light the cauldron at the 1996 Summer Games in Atlanta and realizing that his tremors had taken over. “I heard a rumble in the stadium that became a pounding roar and then turned into a deafening applause,” he wrote. He understood then that Parkinson’s had not defeated him.
“There’s still a lot for me to learn from him, and I never forget that,” Lonnie Ali says. “Muhammad was the epitome of strength and beauty, but could someone with physical challenges really relate to him? Probably not. But now they can identify with him. We used to get letters all the time about people with Parkinson’s who wouldn’t go out of the house, but because they saw Muhammad out, now they go out.
“He still has that power to inspire people—without even opening his mouth.”
Friday, November 20, 2009
City chosen to trial new project for people with Parkinson's
DERBY has been chosen as one of just three places in the country to trial a new project to help people with Parkinson's disease.
Patients at Royal Derby Hospital will take part in a six-week scheme to help them get more involved in managing their condition.
The feedback given by them and medics in the city will be used to develop the programme for national use.
Derby has been chosen because the city's hospitals were last year named as a Parkinson's Disease Centre of Excellence by the USA's National Parkinson Foundation, in recognition of their research, care, education and outreach services for patients.
During the pilot, around 40 patients will be asked to assess changes in their health by monitoring the quality of their sleep, mood and diet, and how long it takes them to complete everyday activities.
Parkinson's disease is a disorder of the nervous system that causes tremors, slow movement and stiffness of muscles.
The pilot, which will also run in Hull and Southampton, is set to take place in January, before being extended across the country by June.
National charity The Cure Parkinson's Trust, which is behind the scheme, hopes it will help patients better understand their condition by recognising areas of everyday life which are affected by it.
A spokeswoman for the charity said a recent survey carried out on behalf of the charity highlighted the importance of the programme.
She said: "Parkinson's disease is a complex, highly individual disorder of the nervous system with a wide range of symptoms that can vary from day to day.
"A person with Parkinson's can give valuable insights to help healthcare professionals.
"The survey found that two-thirds of people with Parkinson's want more involvement in their appointments and 70% said that a resource to help them prepare for those appointments would be useful."
Sheila North, chairman of Derby Parkinson's Disease Society, highlighted a potential problem with the idea.
She said: "It can be very difficult to be objective about one's own abilities.
"I hope the research has a mechanism for an objective assessor to validate the forms."
But Derby nurse Lisa Brown, a specialist in Parkinson's disease, said she was sure the tool would improve the quality of care received by patients.
She said: "This will give us a picture of how they are doing in their day-to-day life and how the disease is affecting them."
Patients at Royal Derby Hospital will take part in a six-week scheme to help them get more involved in managing their condition.
The feedback given by them and medics in the city will be used to develop the programme for national use.
Derby has been chosen because the city's hospitals were last year named as a Parkinson's Disease Centre of Excellence by the USA's National Parkinson Foundation, in recognition of their research, care, education and outreach services for patients.
During the pilot, around 40 patients will be asked to assess changes in their health by monitoring the quality of their sleep, mood and diet, and how long it takes them to complete everyday activities.
Parkinson's disease is a disorder of the nervous system that causes tremors, slow movement and stiffness of muscles.
The pilot, which will also run in Hull and Southampton, is set to take place in January, before being extended across the country by June.
National charity The Cure Parkinson's Trust, which is behind the scheme, hopes it will help patients better understand their condition by recognising areas of everyday life which are affected by it.
A spokeswoman for the charity said a recent survey carried out on behalf of the charity highlighted the importance of the programme.
She said: "Parkinson's disease is a complex, highly individual disorder of the nervous system with a wide range of symptoms that can vary from day to day.
"A person with Parkinson's can give valuable insights to help healthcare professionals.
"The survey found that two-thirds of people with Parkinson's want more involvement in their appointments and 70% said that a resource to help them prepare for those appointments would be useful."
Sheila North, chairman of Derby Parkinson's Disease Society, highlighted a potential problem with the idea.
She said: "It can be very difficult to be objective about one's own abilities.
"I hope the research has a mechanism for an objective assessor to validate the forms."
But Derby nurse Lisa Brown, a specialist in Parkinson's disease, said she was sure the tool would improve the quality of care received by patients.
She said: "This will give us a picture of how they are doing in their day-to-day life and how the disease is affecting them."
Thursday, November 19, 2009
Did Hitler have Parkinson's disease? Danbury doctor thinks so
By Robert Miller
By the end of his life, Adolf Hitler had a pronounced tremor in his hands -- especially his left hand. In his military decisions, he'd become blindly inflexible, unable to base his decisions on the reality of the situation in the field.
Which raises a question that lies somewhere between history and medical diagnosis: Did Hitler have Parkinson's disease? And if he did, did the illness play a part in the end of World War II?
Dr. John Murphy, executive vice president of Danbury Hospital, has looked at photos and eyewitness accounts. He's taken that evidence and connected it with his own experience as a neurologist who has many patients with Parkinson's.
And he's come to a conclusion -- yes, Hitler did have the disease and, yes, it played a part in history.
"It is a little bit off the wall," Murphy said to a packed crowd at a talk last month at Founder's Hall here.
Murphy said Dr. Abraham Lieberman, one of the giants in the study of Parkinson's disease, was the person who first raised the issue when Murphy worked with him.
"He said to me casually, had I ever heard that Hitler had Parkinson's?'' Murphy said. "I asked him if he was reading the National Enquirer. And he said, 'What? Don't you believe me?' ''
Lieberman and Murphy then made a bet. Murphy would study the evidence to see if Lieberman was right.
"After years of reading, I lost the bet,'' Murphy said. "He convinced me. The more I looked to see that Hitler didn't have Parkinson's disease, the more I learned he did."
Murphy said some of the symptoms of Parkinson's disease -- a progressive, degenerative disorder of the nervous system -- are easy to recognize. They include a tremor that gets worse over time, usually starting on one side of the body and spreading to the other.
Parkinson's can also include a slow gait, stooped posture, a voice reduced to a whisper, and a dull stare that does not seem to focus on its surroundings.
Those suffering from Parkinson's can also suffer from cognitive disorders that include a lack of imagination and spontaneity, difficulty making decisions and general apathy.
And, Murphy said, that description fits Hitler in his final years.
Using photos and bits of old newsreels, Murphy showed that Hitler in the 1930s was a voracious orator who freely used both arms while making speeches. In the opening years of the war, he was also willing to let his generals take military gambles. But as the war progressed, Hitler became a different man.
Newsreel footage shows that by 1940, Hitler never used his left hand, which was shaking badly. Instead, he left it hanging by his side or hooked his thumb into his belt. One small bit of footage, however, shows Hitler talking to troops and forgetting to hide the tremors.
"That's a Parkinson's tremor,'' Murphy said, showing the film clip to those who attended the Founder's Hall lecture. "I've seen it a thousand times.''
Hitler's entourage wrote in their memoirs that he walked slowly by the war's end. His voice was reduced to a whisper and both hands shook. He was bent over and shuffling. In his 50s, he looked like a man two or three decades older.
"Hitler's left hand trembled and he had a stooped and rigid posture," wrote Gen. Heinz Gudarian, one of Hitler's generals. An intelligence officer, Gustave Boldt, also wrote of Hitler's tremors and shuffling walk. An SS officer wrote that Hitler in 1945 "had become an old man,'' his voice a whisper.
Murphy also said handwriting analysis shows that as the war progressed, Hitler's handwriting became small and cramped -- another symptom of Parkinson's patients.
By war's end, Murphy added, Hitler had become a liability to his soldiers, ordering them always to advance and hold their position, even when they were outnumbered and surrounded.
His miscalculations about the Allied landings on D-Day may have helped the invasion succeed.
"He stubbornly insisted on holding positions at all costs,'' Murphy said.
The root cause of Hitler's Parkinson's disease may have been a condition know as Von Economo's encephalitis, a swelling of the brain that can occur after a severe infection, Murphy said.
That infection could have been the great 1918 influenza epidemic, which killed 50 million people.
Murphy said that some of the personality changes attributed to Von Economo's encephalitis include obsessiveness, compulsions and a sort of "moral imbecility" that cannot discern good from evil. It also is linked to higher rates of Parkinson's disease.
That, Murphy said, presents a paradox.
"The illness Hitler had both created, and then defeated, the most criminal mind of our times."
By the end of his life, Adolf Hitler had a pronounced tremor in his hands -- especially his left hand. In his military decisions, he'd become blindly inflexible, unable to base his decisions on the reality of the situation in the field.
Which raises a question that lies somewhere between history and medical diagnosis: Did Hitler have Parkinson's disease? And if he did, did the illness play a part in the end of World War II?
Dr. John Murphy, executive vice president of Danbury Hospital, has looked at photos and eyewitness accounts. He's taken that evidence and connected it with his own experience as a neurologist who has many patients with Parkinson's.
And he's come to a conclusion -- yes, Hitler did have the disease and, yes, it played a part in history.
"It is a little bit off the wall," Murphy said to a packed crowd at a talk last month at Founder's Hall here.
Murphy said Dr. Abraham Lieberman, one of the giants in the study of Parkinson's disease, was the person who first raised the issue when Murphy worked with him.
"He said to me casually, had I ever heard that Hitler had Parkinson's?'' Murphy said. "I asked him if he was reading the National Enquirer. And he said, 'What? Don't you believe me?' ''
Lieberman and Murphy then made a bet. Murphy would study the evidence to see if Lieberman was right.
"After years of reading, I lost the bet,'' Murphy said. "He convinced me. The more I looked to see that Hitler didn't have Parkinson's disease, the more I learned he did."
Murphy said some of the symptoms of Parkinson's disease -- a progressive, degenerative disorder of the nervous system -- are easy to recognize. They include a tremor that gets worse over time, usually starting on one side of the body and spreading to the other.
Parkinson's can also include a slow gait, stooped posture, a voice reduced to a whisper, and a dull stare that does not seem to focus on its surroundings.
Those suffering from Parkinson's can also suffer from cognitive disorders that include a lack of imagination and spontaneity, difficulty making decisions and general apathy.
And, Murphy said, that description fits Hitler in his final years.
Using photos and bits of old newsreels, Murphy showed that Hitler in the 1930s was a voracious orator who freely used both arms while making speeches. In the opening years of the war, he was also willing to let his generals take military gambles. But as the war progressed, Hitler became a different man.
Newsreel footage shows that by 1940, Hitler never used his left hand, which was shaking badly. Instead, he left it hanging by his side or hooked his thumb into his belt. One small bit of footage, however, shows Hitler talking to troops and forgetting to hide the tremors.
"That's a Parkinson's tremor,'' Murphy said, showing the film clip to those who attended the Founder's Hall lecture. "I've seen it a thousand times.''
Hitler's entourage wrote in their memoirs that he walked slowly by the war's end. His voice was reduced to a whisper and both hands shook. He was bent over and shuffling. In his 50s, he looked like a man two or three decades older.
"Hitler's left hand trembled and he had a stooped and rigid posture," wrote Gen. Heinz Gudarian, one of Hitler's generals. An intelligence officer, Gustave Boldt, also wrote of Hitler's tremors and shuffling walk. An SS officer wrote that Hitler in 1945 "had become an old man,'' his voice a whisper.
Murphy also said handwriting analysis shows that as the war progressed, Hitler's handwriting became small and cramped -- another symptom of Parkinson's patients.
By war's end, Murphy added, Hitler had become a liability to his soldiers, ordering them always to advance and hold their position, even when they were outnumbered and surrounded.
His miscalculations about the Allied landings on D-Day may have helped the invasion succeed.
"He stubbornly insisted on holding positions at all costs,'' Murphy said.
The root cause of Hitler's Parkinson's disease may have been a condition know as Von Economo's encephalitis, a swelling of the brain that can occur after a severe infection, Murphy said.
That infection could have been the great 1918 influenza epidemic, which killed 50 million people.
Murphy said that some of the personality changes attributed to Von Economo's encephalitis include obsessiveness, compulsions and a sort of "moral imbecility" that cannot discern good from evil. It also is linked to higher rates of Parkinson's disease.
That, Murphy said, presents a paradox.
"The illness Hitler had both created, and then defeated, the most criminal mind of our times."
Wednesday, November 18, 2009
Café serves support for Parkinson’s
By Dan Goldman
About four years ago, Pittsford resident Brad Schramek was diagnosed with Parkinson’s disease.
Soon after, he and his wife, Lynn, began attending support groups through the Parkinson’s Support Group of Upstate New York (PSGUNY).
“We get ideas from people in the group of what helps, be it an exercise or a different medication, different things that are helping them (with Parkinson’s),” Brad said.
Lynn started the Parkinson Café in October, hoping to serve an unmet need. The group offers regular social interaction during the winter months.
“By bringing these people together, they will enrich each other’s lives,” Lynn said. “We’re going to keep the Parkinson Café really upbeat. People can come and interact with other people who will totally accept the limitations and physical challenges they’re facing and understand and support them.”
According to the National Parkinson Foundation, Parkinson’s disease is a brain disorder that occurs when certain nerve cells in part of the brain become impaired. The loss of nerves causes a loss of dopamine — a neurotransmitter that the nerve cells produce — which results in friction in the body’s muscle coordination. Symptoms like shaking, slowness of movement and difficulty with balance are a result of the dopamine loss.
Brad, 48, left his position as vice president of human resources at Monro Muffler.
“I couldn’t multi-task,” he said. “It got to the point that answering the phone and working on the computer was a very difficult thing to do.”
Lynn is the PSGUNY’s vice president of communications. Brad was its vice president of strategic planning, but he recently resigned.
“We realized how much we were benefiting from our involvement in the group, and so much of our lives became devoted to living with Parkinson’s that it became a productive way to channel my creative talent,” Lynn said.
There were 26 Café events scheduled to run between October and April.
Webster resident Linda Lee was diagnosed with Parkinson’s one year ago. She has attended some of the Café events already, including exercise classes at Lifetime Care and a trip to the Strong National Museum of Play.
“It does take away the feeling of isolation,” Lee said. “This was my first time meeting another person with the disease.”
She said the Parkinson Café is a great idea, and she is grateful to Lynn and Brad for starting it.
“We toured the butterfly garden (at Strong), and, as Lynn pointed out, the butterfly is our symbol of hope,” Lee said. “I like to think that we too, like the butterfly, can emerge from our cocoon of immobility and isolation and interact and share with others and have wings to fly.”
Lynn created the Parkinson Café to provide a comfortable place for those affected by Parkinson’s disease and their families to spend time together.
About four years ago, Pittsford resident Brad Schramek was diagnosed with Parkinson’s disease.
Soon after, he and his wife, Lynn, began attending support groups through the Parkinson’s Support Group of Upstate New York (PSGUNY).
“We get ideas from people in the group of what helps, be it an exercise or a different medication, different things that are helping them (with Parkinson’s),” Brad said.
Lynn started the Parkinson Café in October, hoping to serve an unmet need. The group offers regular social interaction during the winter months.
“By bringing these people together, they will enrich each other’s lives,” Lynn said. “We’re going to keep the Parkinson Café really upbeat. People can come and interact with other people who will totally accept the limitations and physical challenges they’re facing and understand and support them.”
According to the National Parkinson Foundation, Parkinson’s disease is a brain disorder that occurs when certain nerve cells in part of the brain become impaired. The loss of nerves causes a loss of dopamine — a neurotransmitter that the nerve cells produce — which results in friction in the body’s muscle coordination. Symptoms like shaking, slowness of movement and difficulty with balance are a result of the dopamine loss.
Brad, 48, left his position as vice president of human resources at Monro Muffler.
“I couldn’t multi-task,” he said. “It got to the point that answering the phone and working on the computer was a very difficult thing to do.”
Lynn is the PSGUNY’s vice president of communications. Brad was its vice president of strategic planning, but he recently resigned.
“We realized how much we were benefiting from our involvement in the group, and so much of our lives became devoted to living with Parkinson’s that it became a productive way to channel my creative talent,” Lynn said.
There were 26 Café events scheduled to run between October and April.
Webster resident Linda Lee was diagnosed with Parkinson’s one year ago. She has attended some of the Café events already, including exercise classes at Lifetime Care and a trip to the Strong National Museum of Play.
“It does take away the feeling of isolation,” Lee said. “This was my first time meeting another person with the disease.”
She said the Parkinson Café is a great idea, and she is grateful to Lynn and Brad for starting it.
“We toured the butterfly garden (at Strong), and, as Lynn pointed out, the butterfly is our symbol of hope,” Lee said. “I like to think that we too, like the butterfly, can emerge from our cocoon of immobility and isolation and interact and share with others and have wings to fly.”
Lynn created the Parkinson Café to provide a comfortable place for those affected by Parkinson’s disease and their families to spend time together.
Tuesday, November 17, 2009
High Tech Visual Feedback Device Dramatically Improves Walking for Parkinson's Disease Patients
Palm Springs, CA resident Daniel Neal had a severe motor impairment due to Parkinson’s Disease. But with the help of a new virtual reality feedback device made by MediGait, he now walks comfortably and confidently without a cane and without falling.
The GaitAid Virtual Walker by MediGait is a high tech, virtual reality pair of goggles with headphones.
This high tech device works by creating an ‘augmented reality’ – computer generated visual cues and audio feedback that dramatically improves walking speed, balance and confidence.
The usual therapy routine simply means going for a walk in a safe, normal environment.
The portable GaitAid unit hooks onto the patient's clothes. A computer processor inside the device measures walking movement. The processor provides visual and audio feedback cues to the display and to the earphones during practice walks while in training. The feedback mechanism provides rewarding stimuli for good movement making the training enjoyable.
Patients often report high motivation and enjoyment during training. People practice on any safe walking path - in the home, in their own neighborhood, or a walking trail. People see greater benefits and improvement as they walk in different environments.
People only need to use the device in training sessions. In as little as two weeks, 20 minutes of training each day resulted in significant lasting improvement in over 70 percent of the patients tested.
Clinical studies have shown that patients with Parkinson’s Disease, Multiple Sclerosis, Cerebral Palsy, and other nervous disorders that produce motor or movement impairment, are able to walk without freezing, have better balance, higher walking speeds and longer strides.
The GaitAid Virtual Walker by MediGait is a high tech, virtual reality pair of goggles with headphones.
This high tech device works by creating an ‘augmented reality’ – computer generated visual cues and audio feedback that dramatically improves walking speed, balance and confidence.
The usual therapy routine simply means going for a walk in a safe, normal environment.
The portable GaitAid unit hooks onto the patient's clothes. A computer processor inside the device measures walking movement. The processor provides visual and audio feedback cues to the display and to the earphones during practice walks while in training. The feedback mechanism provides rewarding stimuli for good movement making the training enjoyable.
Patients often report high motivation and enjoyment during training. People practice on any safe walking path - in the home, in their own neighborhood, or a walking trail. People see greater benefits and improvement as they walk in different environments.
People only need to use the device in training sessions. In as little as two weeks, 20 minutes of training each day resulted in significant lasting improvement in over 70 percent of the patients tested.
Clinical studies have shown that patients with Parkinson’s Disease, Multiple Sclerosis, Cerebral Palsy, and other nervous disorders that produce motor or movement impairment, are able to walk without freezing, have better balance, higher walking speeds and longer strides.
Monday, November 16, 2009
Stem cell treatment of Parkinson's disease
Parkinson's disease is a movement disorder and it is characterized by muscle rigidity, tremor and a slowing of physical movement. This is caused by the degenerative character of the disease, which primarily affects the central nervous system and leads to an impairment of motor and speech skills and a number of other body functions.
Parkinson's disease is usually treated with drugs designed to mask its symptoms, thus helping patients live a more normal life, for a while. But eventually, the drugs become ineffective as the disease worsens. Another treatment that is gaining in popularity is deep brain stimulation; a surgical treatment involving the implantation of a medical device called a brain pacemaker, which sends electrical impulses to specific parts of the brain.
The XCell-Center Parkinson's treatment
The XCell-Center's Parkinson's treatment differs from standard methods because, in contrast to temporarily masking symptoms with drugs or implanted devices, it is a drug-free alternative focused on affecting physical changes in the brain that can improve a patient's quality of life.
In a pilot survey, more than 90% of the Parkinson's patients treated with stem cells at the XCell-Center reported improvements.
Most Parkinson's patients are treated by lumbar puncture; injecting the stem cells into the cerebrospinal fluid which transports them up the spinal canal and into the brain. However, a new procedure, by which the stem cells are surgically implanted directly into the brain, is also available.
Lumbar puncture is an outpatient procedure that requires patients to stay in Germany 4 or 5 nights. Direct surgical implantation is an inpatient procedure that requires patients to stay in Germany for about 10 nights.
Bone Marrow Collection
On the first day, bone marrow is collected from the patient's iliac crest (hip bone) using thin-needle mini-puncture under local anesthesia. Although some pain is felt when the needle is inserted, most patients do not find the bone marrow collection procedure particularly painful. The entire procedure normally takes about 30 minutes.
Once the bone marrow collection is complete, patients may return to their hotel and go about normal activities. Patients who receive general anesthesia must lie down for a short recovery period before returning to their hotel.
Laboratory Processing
The next day, the stem cells are processed from the bone marrow in a state-of-the-art, government approved (cGMP) laboratory. In the lab, both the quantity and quality of the stem cells are measured. These cells have the potential to transform into multiple types of cells and are capable of regenerating or repairing damaged tissue.
Stem Cell Implantation
On the third day, the stem cells are implanted back into the patient by lumbar puncture or surgical implantation. Surgical implantation is performed under general anesthesia.
Lumbar Puncture
A spinal needle is inserted between L4 and L5 vertebrae and a small amount of spinal fluid is removed. A portion of that spinal fluid is mixed with the stem cell solution which is then injected into back into the patient's spinal fluid, not the spinal cord. After the stem cells have been implanted, the patient will lie down in the recovery room for a few hours before returning to his or her hotel room. The lumbar puncture procedure is performed under local anesthesia for adults and general anesthesia for children. Under normal circumstances, procedures performed under local anesthesia are not painful.
Surgical Implantation
Prior to surgery, physical and functional damage will be assessed by computer tomography (CT), magnetic resonance imaging (MRI) and positron emission tomography (PET). Once the affected brain regions have been identified and mapped, the neurosurgeon will implant the stem cells using a high tech navigation system that allows the cells to be placed with high accuracy.
All surgical implantation procedures are performed under general anesthesia.
Following Treatment
Patients who are treated by lumbar puncture are required to stay in town on the day after their procedure for general safety purposes. They may return home on the fifth day.
Surgical implantation patients may leave upon discharge from the hospital, usually on the ninth or tenth day, depending upon how their recovery progresses.
Treatment Results
• One patient reported no change in muscle spasticity, sensation, mobility or feeling of well-being after the treatment.
• Two out of 11 patients reported an overall improvement, with improved mobility (legs, arms) and/or improved strength. Some patients reported a regaining of muscle strength and/or an improvement of balance. There was some improvement of speech and/or a reduction of pain and spasms.
• Eight out of 11 patients reported a strong improvement, with a marked improvement of mobility, speech and significantly reduced pain and spasms.
• No patients reported a perceived deterioration of the quality of their life.
Costs
Stem cell implantation via lumbar puncture: 7,545 Euros (adults)
Minimally invasive surgical implantation of stem cells directly into the brain: 25,500 Euros
Evaluation Process
In order to be evaluated for treatment, patients must complete an online medical history form. Once you've completed the online medical history and submitted it, a patient relations consultant will contact you within 3 business days. He or she will assist you with the rest of the evaluation process. Upon treatment approval, your consultant will also assist you with treatment scheduling and trip preparation.
Parkinson's disease is usually treated with drugs designed to mask its symptoms, thus helping patients live a more normal life, for a while. But eventually, the drugs become ineffective as the disease worsens. Another treatment that is gaining in popularity is deep brain stimulation; a surgical treatment involving the implantation of a medical device called a brain pacemaker, which sends electrical impulses to specific parts of the brain.
The XCell-Center Parkinson's treatment
The XCell-Center's Parkinson's treatment differs from standard methods because, in contrast to temporarily masking symptoms with drugs or implanted devices, it is a drug-free alternative focused on affecting physical changes in the brain that can improve a patient's quality of life.
In a pilot survey, more than 90% of the Parkinson's patients treated with stem cells at the XCell-Center reported improvements.
Most Parkinson's patients are treated by lumbar puncture; injecting the stem cells into the cerebrospinal fluid which transports them up the spinal canal and into the brain. However, a new procedure, by which the stem cells are surgically implanted directly into the brain, is also available.
Lumbar puncture is an outpatient procedure that requires patients to stay in Germany 4 or 5 nights. Direct surgical implantation is an inpatient procedure that requires patients to stay in Germany for about 10 nights.
Bone Marrow Collection
On the first day, bone marrow is collected from the patient's iliac crest (hip bone) using thin-needle mini-puncture under local anesthesia. Although some pain is felt when the needle is inserted, most patients do not find the bone marrow collection procedure particularly painful. The entire procedure normally takes about 30 minutes.
Once the bone marrow collection is complete, patients may return to their hotel and go about normal activities. Patients who receive general anesthesia must lie down for a short recovery period before returning to their hotel.
Laboratory Processing
The next day, the stem cells are processed from the bone marrow in a state-of-the-art, government approved (cGMP) laboratory. In the lab, both the quantity and quality of the stem cells are measured. These cells have the potential to transform into multiple types of cells and are capable of regenerating or repairing damaged tissue.
Stem Cell Implantation
On the third day, the stem cells are implanted back into the patient by lumbar puncture or surgical implantation. Surgical implantation is performed under general anesthesia.
Lumbar Puncture
A spinal needle is inserted between L4 and L5 vertebrae and a small amount of spinal fluid is removed. A portion of that spinal fluid is mixed with the stem cell solution which is then injected into back into the patient's spinal fluid, not the spinal cord. After the stem cells have been implanted, the patient will lie down in the recovery room for a few hours before returning to his or her hotel room. The lumbar puncture procedure is performed under local anesthesia for adults and general anesthesia for children. Under normal circumstances, procedures performed under local anesthesia are not painful.
Surgical Implantation
Prior to surgery, physical and functional damage will be assessed by computer tomography (CT), magnetic resonance imaging (MRI) and positron emission tomography (PET). Once the affected brain regions have been identified and mapped, the neurosurgeon will implant the stem cells using a high tech navigation system that allows the cells to be placed with high accuracy.
All surgical implantation procedures are performed under general anesthesia.
Following Treatment
Patients who are treated by lumbar puncture are required to stay in town on the day after their procedure for general safety purposes. They may return home on the fifth day.
Surgical implantation patients may leave upon discharge from the hospital, usually on the ninth or tenth day, depending upon how their recovery progresses.
Treatment Results
• One patient reported no change in muscle spasticity, sensation, mobility or feeling of well-being after the treatment.
• Two out of 11 patients reported an overall improvement, with improved mobility (legs, arms) and/or improved strength. Some patients reported a regaining of muscle strength and/or an improvement of balance. There was some improvement of speech and/or a reduction of pain and spasms.
• Eight out of 11 patients reported a strong improvement, with a marked improvement of mobility, speech and significantly reduced pain and spasms.
• No patients reported a perceived deterioration of the quality of their life.
Costs
Stem cell implantation via lumbar puncture: 7,545 Euros (adults)
Minimally invasive surgical implantation of stem cells directly into the brain: 25,500 Euros
Evaluation Process
In order to be evaluated for treatment, patients must complete an online medical history form. Once you've completed the online medical history and submitted it, a patient relations consultant will contact you within 3 business days. He or she will assist you with the rest of the evaluation process. Upon treatment approval, your consultant will also assist you with treatment scheduling and trip preparation.
Sunday, November 15, 2009
Parkinson's Disease can’t slow Freddie Roach’s ascent
His head tilts to the right. When he walks, a foot drags a little behind him. His hands tremble. His voice is shaky. Freddie Roach is 49 and has been fighting Parkinson’s disease for 17 years.
There are times he looks it.
Then he gets into a ring wearing mitts to train one of his fighters, who range from L.A. ham and eggers to Manny Pacquiao, the pound-for-pound best fighter in the world who takes on Miguel Cotto for the World Boxing Organization welterweight championship Saturday at the MGM Grand Garden Arena.
Manny Pacquiao’s trainer, Freddie Roach, left, has battled Parkinson’s disease for 17 years.
It’s then that Roach moves with light feet and quick hands. He demonstrates some of the speed that made him a boxing headliner back in the day (“Crowd Pleasing Veteran,” the Camacho-Roach poster declares.)
Here’s Freddie Roach, moving and bobbing and throwing punches just the way Cotto, a man 20 years his junior, does. He is mimicking the style that he’s watched in endless scouting sessions of past fights, which is how he always prepares. He’s deft enough at it that Pacquiao hasn’t just blossomed into a superstar, but Roach has become the greatest trainer in the game today.
“Once I get in the ring, all the diseases go away,” Roach said. “I don’t shake.”
It’s a startling transformation; a demanding, athletic task seemingly conquering a physically debilitating disease. Where he slows outside the ropes, he comes to life within them, becoming the ultimate example of a man living with, rather than dying from, an ailment.
It’s left Roach confident that the end of his career is nowhere in sight. That he’ll be able to continue to work the mitts for fighters, that he’ll continue his frenetic pace – he works six days a week, often 12-hour days at his Wild Card Boxing Gym in Hollywood, Calif.
And mostly that he’ll continue to not just work championship fights, but develop championship fighters, the way he has with Pacquiao over the last eight years.
“Freddie believes he has 25 more years in his career,” said Roach’s long-time agent, Nick Khan. “We never discuss retiring.”
Roach’s strengths as a trainer are numerous, but two stand out.
One is his dedication to teaching the game. He isn’t just about preparing a fighter for a single fight (although that’s part of it). It’s about long-range construction also.
The second is that through the education process, his blunt honesty and unwavering dedication to the sport creates a trust with his fighters that can’t be shaken. Here’s a guy with a serious disease, pouring everything into them – he has no wife and few outside interests.
One feeds into the other. The more he teaches, the more they trust. The more they trust, the more teachable they become.
It is how a middle-aged guy from suburban Boston and a kid from the streets of General Santos City in the Philippines became so tight.
“The conditions in General Santos City is 50 times worse than any inner city in America,” Khan said. “Manny, coming from there, has a lot of street smarts and I think he recognized what Freddie was about immediately.”
Roach calls the day he met Pacquiao the “luckiest of my life.” At the time, few top trainers wanted anything to do with the fighter.
“Everyone turned him down because he was only 122 pounds, there wasn’t a lot of money at that weight,” Roach said. “I saw a lot of potential in Manny Pacquiao. He was just rough around the edges.
“The first day he came into the gym, the first round we wore the mitts, we connected like we knew each other for years.”
Together they built a near-perfect fighter, one that has helped make both of them rich and famous.
“He’s the master,” Pacquiao said. “I used to call him Coach Freddie, but now he’s just the master; the master of boxing.”
The master refuses to be slowed on Thursday. He isn’t in the ring but working radio row here at the MGM’s media center. This isn’t his comfort zone. After his boxing career ended, Roach was broke and needed work. He worked for a stretch as a telemarketer, which didn’t always go so well, “I’m not a great speaker so I wasn’t a great salesman.”
And that was before he got sick. Now he has to sell the fight, one radio show, one television interview, at a time. He’s become one of the most recognizable faces in the sport due to his series of appearances on HBO’s “24/7” reality show. Roach is earnest, though. He does his job, always, attacking each question like he hadn’t already answered it 100 times this week.
Roach shrugs. He’s not too proud to do what it takes. Post-fighting career he worked for a stretch as a bus boy in Vegas, the same city he once headlined cards. “I think that was humbling,” Khan said.
The one thing that time of his life taught him was financial discipline. He’s notoriously stingy. For years he lived in a spare room at the Wild Card gym. When his friends and family finally convinced him to buy a house, he paid cash for it.
“I don’t buy stuff until I can afford it,” he said. “It’s the best way, I think. The first big pay day I had was [$13,500], in six months it was gone, I was out of money. I said, ‘Where’d it go?’ I said to myself, ‘You know, I never make that mistake again in my life. I’ll always have money.’ ”
All of this rings true for the fighters. They may not know his story, but they sense his humility. They may not understand his disease, but they see the symptoms he overcomes. They may not know the full depth of his dedication, but they see enough to know how much he cares. They recognize that he’s lived it all – the training, the fights, the money, the injuries that linger (his Parkinson’s was brought on by taking too many punches).
They see the shaking hands, the dropped foot when he walks, the tilt of his head. It makes them listen more closely.
He’ll scoff at anyone who thinks the disease affects his present or will limit his future. Training fighters isn’t killing him; it’s keeping him alive and well. There’s no greater therapy, physical or mental, than round after round in the ring, “40 or 50 a day,” he estimates.
“One-hundred percent it’s helped,” he said. “The hand-eye coordination alone. I’m better now than when I was diagnosed in 1992.”
True in every imaginable way.
There are times he looks it.
Then he gets into a ring wearing mitts to train one of his fighters, who range from L.A. ham and eggers to Manny Pacquiao, the pound-for-pound best fighter in the world who takes on Miguel Cotto for the World Boxing Organization welterweight championship Saturday at the MGM Grand Garden Arena.
Manny Pacquiao’s trainer, Freddie Roach, left, has battled Parkinson’s disease for 17 years.
It’s then that Roach moves with light feet and quick hands. He demonstrates some of the speed that made him a boxing headliner back in the day (“Crowd Pleasing Veteran,” the Camacho-Roach poster declares.)
Here’s Freddie Roach, moving and bobbing and throwing punches just the way Cotto, a man 20 years his junior, does. He is mimicking the style that he’s watched in endless scouting sessions of past fights, which is how he always prepares. He’s deft enough at it that Pacquiao hasn’t just blossomed into a superstar, but Roach has become the greatest trainer in the game today.
“Once I get in the ring, all the diseases go away,” Roach said. “I don’t shake.”
It’s a startling transformation; a demanding, athletic task seemingly conquering a physically debilitating disease. Where he slows outside the ropes, he comes to life within them, becoming the ultimate example of a man living with, rather than dying from, an ailment.
It’s left Roach confident that the end of his career is nowhere in sight. That he’ll be able to continue to work the mitts for fighters, that he’ll continue his frenetic pace – he works six days a week, often 12-hour days at his Wild Card Boxing Gym in Hollywood, Calif.
And mostly that he’ll continue to not just work championship fights, but develop championship fighters, the way he has with Pacquiao over the last eight years.
“Freddie believes he has 25 more years in his career,” said Roach’s long-time agent, Nick Khan. “We never discuss retiring.”
Roach’s strengths as a trainer are numerous, but two stand out.
One is his dedication to teaching the game. He isn’t just about preparing a fighter for a single fight (although that’s part of it). It’s about long-range construction also.
The second is that through the education process, his blunt honesty and unwavering dedication to the sport creates a trust with his fighters that can’t be shaken. Here’s a guy with a serious disease, pouring everything into them – he has no wife and few outside interests.
One feeds into the other. The more he teaches, the more they trust. The more they trust, the more teachable they become.
It is how a middle-aged guy from suburban Boston and a kid from the streets of General Santos City in the Philippines became so tight.
“The conditions in General Santos City is 50 times worse than any inner city in America,” Khan said. “Manny, coming from there, has a lot of street smarts and I think he recognized what Freddie was about immediately.”
Roach calls the day he met Pacquiao the “luckiest of my life.” At the time, few top trainers wanted anything to do with the fighter.
“Everyone turned him down because he was only 122 pounds, there wasn’t a lot of money at that weight,” Roach said. “I saw a lot of potential in Manny Pacquiao. He was just rough around the edges.
“The first day he came into the gym, the first round we wore the mitts, we connected like we knew each other for years.”
Together they built a near-perfect fighter, one that has helped make both of them rich and famous.
“He’s the master,” Pacquiao said. “I used to call him Coach Freddie, but now he’s just the master; the master of boxing.”
The master refuses to be slowed on Thursday. He isn’t in the ring but working radio row here at the MGM’s media center. This isn’t his comfort zone. After his boxing career ended, Roach was broke and needed work. He worked for a stretch as a telemarketer, which didn’t always go so well, “I’m not a great speaker so I wasn’t a great salesman.”
And that was before he got sick. Now he has to sell the fight, one radio show, one television interview, at a time. He’s become one of the most recognizable faces in the sport due to his series of appearances on HBO’s “24/7” reality show. Roach is earnest, though. He does his job, always, attacking each question like he hadn’t already answered it 100 times this week.
Roach shrugs. He’s not too proud to do what it takes. Post-fighting career he worked for a stretch as a bus boy in Vegas, the same city he once headlined cards. “I think that was humbling,” Khan said.
The one thing that time of his life taught him was financial discipline. He’s notoriously stingy. For years he lived in a spare room at the Wild Card gym. When his friends and family finally convinced him to buy a house, he paid cash for it.
“I don’t buy stuff until I can afford it,” he said. “It’s the best way, I think. The first big pay day I had was [$13,500], in six months it was gone, I was out of money. I said, ‘Where’d it go?’ I said to myself, ‘You know, I never make that mistake again in my life. I’ll always have money.’ ”
All of this rings true for the fighters. They may not know his story, but they sense his humility. They may not understand his disease, but they see the symptoms he overcomes. They may not know the full depth of his dedication, but they see enough to know how much he cares. They recognize that he’s lived it all – the training, the fights, the money, the injuries that linger (his Parkinson’s was brought on by taking too many punches).
They see the shaking hands, the dropped foot when he walks, the tilt of his head. It makes them listen more closely.
He’ll scoff at anyone who thinks the disease affects his present or will limit his future. Training fighters isn’t killing him; it’s keeping him alive and well. There’s no greater therapy, physical or mental, than round after round in the ring, “40 or 50 a day,” he estimates.
“One-hundred percent it’s helped,” he said. “The hand-eye coordination alone. I’m better now than when I was diagnosed in 1992.”
True in every imaginable way.
New research to halt Parkinson's, Michael J. Fox remains hopeful
By Tom Blackwell
A decade ago, Michael J. Fox predicted Parkinson's -- the disease that has afflicted him for 17 years -- would be cured in 10 years. No such breakthrough is close, but new research at the University of Windsor could halt its advance.
Each time University of Windsor graduate student Katie Facecchia sees the B.C-raised actor on television, talking about his life-and-death battle with Parkinson's disease, she "can't help but think -- just hang on, there'll be something soon."
Ms. Facecchia is part of a team of researchers from the school's biochemistry and psychology departments, led by Prof. Siyaram Pandey, who believe they have made a research breakthrough that laboratory tests have proven halt the advance of Parkinson's.
Prof. Pandey said the treatment is a water-soluble formulation of the natural chemical compound - coenzyme Q10 - that stops further degeneration of neurons in the brains of lab rats.
The currently non-curable neurodegenerative disease is caused by the death of brain cells that produce dopamine, a chemical that carries signals between the nerves in the brain that control movement.
The "Co-Q10" compound cannot reverse the damage, cautioned Prof. Pandey, but he said it can halt its progression.
"As the disease progresses, the neurons die at a faster rate," said Prof. Pandey, "Usually, by the time it's diagnosed, 50 per cent of the neurons are gone. The only treatment now is for the symptoms, but the dosage has to always be increased, because the neurons continue to die. If we can protect those neurons that are left over, it could lead to a normal life."
He said the research so far has "shown amazing results . . . the near-complete protection of brain cells."
The findings have been published in the academic journal BMC Neuroscience, and the team has begun collaborating with a pharmaceutical company based in New Jersey, Zymes LLC.
Prof. Pandey said he hopes their research will proceed to clinical testing soon.
"We're still at the pre-clinical stage," he said. "But the results are promising."
Mr. Fox officially launched his research foundation in Canada on Thursday, saying he still wakes up every day believing the illness will be beaten during his lifetime, but now recognizes the advances will come in small, often unspectacular steps.
"I have learned that 99% of progress is failure," said the 47-year-old former star of TV and movies.
"You're not so much proving things as disproving things, and that is a fundamental part of it," he said. "The brain is like space, like the depths of the ocean: it's this frontier we just don't understand ... I'd love to get the answers, but if we can find the right questions, that's just as important for me and just as exciting."
He later suggested that scientists will have figured out the disease within 30 or 40 years, "if not a lot sooner," but said he was not driven by a desire to find a cure for himself.
"People have a hard time believing this - [but] I sometimes forget that I'm even affected by this," he said. "I want to enable and empower those who have the intelligence and the knowledge and the wherewithal to solve the problem ."
Throughout a 20-minute news-conference appearance in Toronto, Mr. Fox swayed back and forth under the disorder's influence, his hands clenching the table in front of him and his voice faltering at times, but kept his audience rapt with often-witty responses.
The Michael J. Fox Foundation - which has dispersed $150-million in the United States, Canada and elsewhere since its founding in 2000 - has just been given charitable status in Canada, a fact that Mr. Fox said meant a lot to him as a Canadian.
He and the foundation's CEO, Katie Hood, heaped praise on the event's co-hosts, the McEwan Centre for Regenerative Medicine - cutting-edge stem-cell researchers - and Toronto Western, which Ms. Hood called one of the world's hotbeds of Parkinson's science.
The Fox foundation itself has earned positive reviews for its focused, aggressive approach to funding research, designed to ensure scientists share information and quickly pounce on any breakthroughs.
The actor, who first found fame in the 1980s NBC series Family Ties, and later in movies such as Back to the Future, played a much different role in recent years as a high-profile opponent of George W. Bush's decision to bar U.S. government funding of research on embryonic stem cells.
That funding decision has since been overturned by Barack Obama, who succeeded Mr. Bush as president. And scientists at Thursday's event suggested stem cells - with their ability to convert into other types of cells - may help them understand how Parkinson's affects the brain, but are unlikely to be developed into a "magical" cure.
Meanwhile, Mr. Fox dismissed complaints that his research-focused charity will sap donor dollars from the Parkinson's Society, a Canadian group dedicated to supporting and advocating for the country's 100,000 patients, stressing that the foundation is not launching an "invasion" of this country.
"I really feel that a rising tide lifts all boats," he said. "I think in the 10 years we've been doing this, we've raised Parkinson's awareness to the point where most organizations and most people endeavouring to help the Parkinson's community are getting more attention than they did."
A decade ago, Michael J. Fox predicted Parkinson's -- the disease that has afflicted him for 17 years -- would be cured in 10 years. No such breakthrough is close, but new research at the University of Windsor could halt its advance.
Each time University of Windsor graduate student Katie Facecchia sees the B.C-raised actor on television, talking about his life-and-death battle with Parkinson's disease, she "can't help but think -- just hang on, there'll be something soon."
Ms. Facecchia is part of a team of researchers from the school's biochemistry and psychology departments, led by Prof. Siyaram Pandey, who believe they have made a research breakthrough that laboratory tests have proven halt the advance of Parkinson's.
Prof. Pandey said the treatment is a water-soluble formulation of the natural chemical compound - coenzyme Q10 - that stops further degeneration of neurons in the brains of lab rats.
The currently non-curable neurodegenerative disease is caused by the death of brain cells that produce dopamine, a chemical that carries signals between the nerves in the brain that control movement.
The "Co-Q10" compound cannot reverse the damage, cautioned Prof. Pandey, but he said it can halt its progression.
"As the disease progresses, the neurons die at a faster rate," said Prof. Pandey, "Usually, by the time it's diagnosed, 50 per cent of the neurons are gone. The only treatment now is for the symptoms, but the dosage has to always be increased, because the neurons continue to die. If we can protect those neurons that are left over, it could lead to a normal life."
He said the research so far has "shown amazing results . . . the near-complete protection of brain cells."
The findings have been published in the academic journal BMC Neuroscience, and the team has begun collaborating with a pharmaceutical company based in New Jersey, Zymes LLC.
Prof. Pandey said he hopes their research will proceed to clinical testing soon.
"We're still at the pre-clinical stage," he said. "But the results are promising."
Mr. Fox officially launched his research foundation in Canada on Thursday, saying he still wakes up every day believing the illness will be beaten during his lifetime, but now recognizes the advances will come in small, often unspectacular steps.
"I have learned that 99% of progress is failure," said the 47-year-old former star of TV and movies.
"You're not so much proving things as disproving things, and that is a fundamental part of it," he said. "The brain is like space, like the depths of the ocean: it's this frontier we just don't understand ... I'd love to get the answers, but if we can find the right questions, that's just as important for me and just as exciting."
He later suggested that scientists will have figured out the disease within 30 or 40 years, "if not a lot sooner," but said he was not driven by a desire to find a cure for himself.
"People have a hard time believing this - [but] I sometimes forget that I'm even affected by this," he said. "I want to enable and empower those who have the intelligence and the knowledge and the wherewithal to solve the problem ."
Throughout a 20-minute news-conference appearance in Toronto, Mr. Fox swayed back and forth under the disorder's influence, his hands clenching the table in front of him and his voice faltering at times, but kept his audience rapt with often-witty responses.
The Michael J. Fox Foundation - which has dispersed $150-million in the United States, Canada and elsewhere since its founding in 2000 - has just been given charitable status in Canada, a fact that Mr. Fox said meant a lot to him as a Canadian.
He and the foundation's CEO, Katie Hood, heaped praise on the event's co-hosts, the McEwan Centre for Regenerative Medicine - cutting-edge stem-cell researchers - and Toronto Western, which Ms. Hood called one of the world's hotbeds of Parkinson's science.
The Fox foundation itself has earned positive reviews for its focused, aggressive approach to funding research, designed to ensure scientists share information and quickly pounce on any breakthroughs.
The actor, who first found fame in the 1980s NBC series Family Ties, and later in movies such as Back to the Future, played a much different role in recent years as a high-profile opponent of George W. Bush's decision to bar U.S. government funding of research on embryonic stem cells.
That funding decision has since been overturned by Barack Obama, who succeeded Mr. Bush as president. And scientists at Thursday's event suggested stem cells - with their ability to convert into other types of cells - may help them understand how Parkinson's affects the brain, but are unlikely to be developed into a "magical" cure.
Meanwhile, Mr. Fox dismissed complaints that his research-focused charity will sap donor dollars from the Parkinson's Society, a Canadian group dedicated to supporting and advocating for the country's 100,000 patients, stressing that the foundation is not launching an "invasion" of this country.
"I really feel that a rising tide lifts all boats," he said. "I think in the 10 years we've been doing this, we've raised Parkinson's awareness to the point where most organizations and most people endeavouring to help the Parkinson's community are getting more attention than they did."
Famous celebrities afflicted with Parkinson's Disease
One of the famous celebrities suffering from Parkinson's disease is the Edmonton native Michael J. Fox. He used his fame as an actor to take a lead role in the fight against Parkinson's disease. He has been named the most influential Canadian expatriate.
Fox, 48,was chosen in a contest and vote held by the Canadian Expat Association, earning the nod ahead of such other Canadian luminaries as hockey star Wayne Gretzky and rock music legend Neil Young.
The association cited Fox for "the bravery of his personal fight against Parkinson's disease and the scope and effectiveness of his global campaign to find a cure."
Fox rose to fame in the 1980s, starring in movies like the Back to the Future series and Teen Wolf, and the TV sitcoms Family Ties and Spin City. In 1991, he was found to have Parkinson's disease, a disorder that attacks the central nervous system.
Another famous celebrity is Reverend Billy Graham, who is the pastor to presidents. He celebrated his 91st birthday last Saturday.He visited with family at his home in Montreat, just outside Asheville.
He's not given interviews, but his evangelistic association issued a news release quoting him as saying that "his heart is filled with gratitude to the Lord for all that He has done for him, and for all the prayers from so many people over the years."
The Reverend Graham has Parkinson's Disease, his hearing and vision have weakened, and he's suffered several falls recently.
But his group says he has a strong heart and a clear mind.
Fox, 48,was chosen in a contest and vote held by the Canadian Expat Association, earning the nod ahead of such other Canadian luminaries as hockey star Wayne Gretzky and rock music legend Neil Young.
The association cited Fox for "the bravery of his personal fight against Parkinson's disease and the scope and effectiveness of his global campaign to find a cure."
Fox rose to fame in the 1980s, starring in movies like the Back to the Future series and Teen Wolf, and the TV sitcoms Family Ties and Spin City. In 1991, he was found to have Parkinson's disease, a disorder that attacks the central nervous system.
Another famous celebrity is Reverend Billy Graham, who is the pastor to presidents. He celebrated his 91st birthday last Saturday.He visited with family at his home in Montreat, just outside Asheville.
He's not given interviews, but his evangelistic association issued a news release quoting him as saying that "his heart is filled with gratitude to the Lord for all that He has done for him, and for all the prayers from so many people over the years."
The Reverend Graham has Parkinson's Disease, his hearing and vision have weakened, and he's suffered several falls recently.
But his group says he has a strong heart and a clear mind.
An Overview of Parkinson's disease
Parkinson's disease involves a breakdown of the nerve cells in the motor area of the brain. As the cells break down, there is a shortage of dopamine. Dopamine is a neurotransmitter, or chemical that carries messages to the body. When there is a shortage of dopamine, the messages that regulate movement aren't sent properly.
What are the causes and risks of the disease?
The cause of Parkinson's disease is not known. There may be a hereditary tendency to the disease that is worsened by factors in the environment. Some people with Parkinson's disease have an abnormality on chromosome 4.
There is evidence that Parkinson's disease may be caused by a defect in the body's normal methods for breaking down protein. This defect allows debris to build up in the brain and damage brain cells. The defect may be caused by one or more of the following factors:
- an environmental toxin, such as pesticides
- a gene defect, such as the abnormality on chromosome 4
- a viral infection
The symptoms of Parkinson's disease usually begin at about age 60. It is most common in people in their 70s and 80s. Parkinson's disease is twice as frequent in men than in women. Preliminary research suggests that estrogen, a female hormone, may protect against Parkinson's disease.
What are the treatments for the disease?
There is no cure for Parkinson's disease. The major goal of treatment is to prevent deterioration. Symptoms can usually be well controlled for several years in the early stages of the disease.
Early in the disease, medications are used. One of the most common medicines is a combination of levodopa and carbidopa. Although this combination is effective, it tends to work less and less over time. Other medications used to treat Parkinson's disease include the following:
- amantadine
- pergolide
- pramipexole
- ropinirole
- selegiline
Another treatment is surgery. Surgery can include removal of a tiny part of the brain. Another approach is deep brain stimulation with electricity.
People may need other treatments to deal with the many problems associated with the disease. If dementia is present, close monitoring may be needed. Treatment with antidepressants, antipsychotic medications, or sedatives can also help relieve some symptoms. Physical and occupational therapy, as well as speech therapy may help. The use of a service dog and in-home care may be needed.
Other medications may be used in late-stage Parkinson's disease to control symptoms. Medicines can be helpful when there are problems with bladder control, for example. Men with Parkinson's disease may be given medications for erectile dysfunction.
Researchers continue to test new treatments for Parkinson's disease. Implanting fetal cells into the brain of people with Parkinson's disease was recently tried and failed. In some people, the treatment caused severe problems with movement.
What are the side effects of the treatments?
Medications used to treat Parkinson's disease may cause abnormal body movements. Other side effects include nausea, drowsiness, confusion, and dry mouth.
Surgery may cause difficulty with speech or paralysis on one side of the body.
Deep brain stimulation usually requires more than one operation. There is also a risk of bleeding, infection, or allergic reaction to anesthesia.
What happens after treatment for the disease?
People with Parkinson's disease need treatment for life.
How is the disease monitored?
A family member or caregiver is important when it comes to monitoring Parkinson's disease. They can give the healthcare provider day-to-day input on benefits and side effects of treatment. Any new or worsening symptoms should be reported to the healthcare provider.
What are the causes and risks of the disease?
The cause of Parkinson's disease is not known. There may be a hereditary tendency to the disease that is worsened by factors in the environment. Some people with Parkinson's disease have an abnormality on chromosome 4.
There is evidence that Parkinson's disease may be caused by a defect in the body's normal methods for breaking down protein. This defect allows debris to build up in the brain and damage brain cells. The defect may be caused by one or more of the following factors:
- an environmental toxin, such as pesticides
- a gene defect, such as the abnormality on chromosome 4
- a viral infection
The symptoms of Parkinson's disease usually begin at about age 60. It is most common in people in their 70s and 80s. Parkinson's disease is twice as frequent in men than in women. Preliminary research suggests that estrogen, a female hormone, may protect against Parkinson's disease.
What are the treatments for the disease?
There is no cure for Parkinson's disease. The major goal of treatment is to prevent deterioration. Symptoms can usually be well controlled for several years in the early stages of the disease.
Early in the disease, medications are used. One of the most common medicines is a combination of levodopa and carbidopa. Although this combination is effective, it tends to work less and less over time. Other medications used to treat Parkinson's disease include the following:
- amantadine
- pergolide
- pramipexole
- ropinirole
- selegiline
Another treatment is surgery. Surgery can include removal of a tiny part of the brain. Another approach is deep brain stimulation with electricity.
People may need other treatments to deal with the many problems associated with the disease. If dementia is present, close monitoring may be needed. Treatment with antidepressants, antipsychotic medications, or sedatives can also help relieve some symptoms. Physical and occupational therapy, as well as speech therapy may help. The use of a service dog and in-home care may be needed.
Other medications may be used in late-stage Parkinson's disease to control symptoms. Medicines can be helpful when there are problems with bladder control, for example. Men with Parkinson's disease may be given medications for erectile dysfunction.
Researchers continue to test new treatments for Parkinson's disease. Implanting fetal cells into the brain of people with Parkinson's disease was recently tried and failed. In some people, the treatment caused severe problems with movement.
What are the side effects of the treatments?
Medications used to treat Parkinson's disease may cause abnormal body movements. Other side effects include nausea, drowsiness, confusion, and dry mouth.
Surgery may cause difficulty with speech or paralysis on one side of the body.
Deep brain stimulation usually requires more than one operation. There is also a risk of bleeding, infection, or allergic reaction to anesthesia.
What happens after treatment for the disease?
People with Parkinson's disease need treatment for life.
How is the disease monitored?
A family member or caregiver is important when it comes to monitoring Parkinson's disease. They can give the healthcare provider day-to-day input on benefits and side effects of treatment. Any new or worsening symptoms should be reported to the healthcare provider.
Sunday, June 14, 2009
ESSENTIAL TREMOR VS. PARKINSON'S DISEASE
Essential tremor is a progressive neurological disorder where the arms, hands head and neck shake during voluntary movements such as eating and writing. Some patients may have unsteadiness and problems with gait and balance that are above and beyond the signs of normal aging. Other diseases or conditions don't cause essential tremor, although it's sometimes confused with Parkinson's disease. It can happen at any age, but it's most common in older adults. According to the National Institutes of Health, essential tremor may affect as many as 14 percent of people over the age of 65. Essential tremor is ten to twenty times more prevalent than Parkinson's disease and is the most common of the movement disorders, affecting more than 10 million Americans.
Many people associate tremors with Parkinson's disease, but the two conditions are very different.
• Essential tremor typically occurs when hands are in use. Tremors from Parkinson's are most prominent when a person's hands are at their side or resting in their lap.
• Essential tremor doesn't cause other health problems. Parkinson's is associated with a stooped posture, slow movement and shuffling gait.
• Essential tremor can involve your hands, head and voice. Tremors from Parkinson's typically affect your hands, but not the head and voice.
DEEP BRAIN STIMULATION: For almost 50 percent of people with essential tremor, medication doesn't work or it carries debilitating side effects. That's when many consider surgery. During deep brain stimulation surgery, the patient is awake. A neurosurgeon implants an electrode into the thalamus portion of the brain. That electrode is connected to an implanted neurostimulator placed near the collarbone. During the surgery, patients are asked to perform tasks that have been difficult or impossible prior to surgery, like holding a mug and touching the point of their finger to something. As surgeons adjust the setting, they often see immediate improvement and the shaking stops. The signal emitted from the stimulator interrupts the signal in the brain that tells the body to move uncontrollably. Patients routinely go back to the doctor to have their stimulators fine-tuned. Patients also take home a remote control that can switch the device on or off. When it's in the off mode, tremors come back immediately.
source:
Many people associate tremors with Parkinson's disease, but the two conditions are very different.
• Essential tremor typically occurs when hands are in use. Tremors from Parkinson's are most prominent when a person's hands are at their side or resting in their lap.
• Essential tremor doesn't cause other health problems. Parkinson's is associated with a stooped posture, slow movement and shuffling gait.
• Essential tremor can involve your hands, head and voice. Tremors from Parkinson's typically affect your hands, but not the head and voice.
DEEP BRAIN STIMULATION: For almost 50 percent of people with essential tremor, medication doesn't work or it carries debilitating side effects. That's when many consider surgery. During deep brain stimulation surgery, the patient is awake. A neurosurgeon implants an electrode into the thalamus portion of the brain. That electrode is connected to an implanted neurostimulator placed near the collarbone. During the surgery, patients are asked to perform tasks that have been difficult or impossible prior to surgery, like holding a mug and touching the point of their finger to something. As surgeons adjust the setting, they often see immediate improvement and the shaking stops. The signal emitted from the stimulator interrupts the signal in the brain that tells the body to move uncontrollably. Patients routinely go back to the doctor to have their stimulators fine-tuned. Patients also take home a remote control that can switch the device on or off. When it's in the off mode, tremors come back immediately.
source:
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