September 23, 2007 by mike.

By James Langston

ATASCADERO, California — In Monterey County Jail, in the spring of 1981, a 21-year-old drug dealer and junkie named Toby Govea lay in bed shaking violently and uncontrollably. Thanks to a bad batch of homemade heroin, Govea had developed symptoms of Parkinson’s Disease, an incurable neurological illness that causes muscle rigidity, tremors and eventually loss of movement.

Today, Govea remains incarcerated — but free of tremors, thanks to a treatment made possible by research on the prisoner’s own brain.

The treatment, called deep brain stimulation, has become the leading surgical treatment for Parkinson’s, which afflicts 1.5 million Americans. It has been performed on more than 20,000 patients in the past decade.

In July of this year at the Atascadero State Hospital in California, Govea was lucid, and his muscles were still, as he recalled the events that made him a human guinea pig who helped develop a treatment for his own illness.

Govea used a drug he thought was heroin in late 1980. An acquaintance of his father’s from Texas had come to their house in Salinas with a briefcase full it. “He didn’t say ‘This is pure stuff,’ or ‘This is from Mexico,’ like the other connections…. I remember him saying, ‘This is homemade,’ or something.”

He had learned drug use from his family as a kid, experimenting with cocaine, PCP and other drugs before becoming a heroin addict. But even a seasoned drug user like Govea couldn’t tell the Texan’s drug was not heroin at all, but the result of a botched attempt at making it. The creation was a synthetic narcotic composed almost entirely of 1-methyl 4-phenyl 1,2,3,6-tetrahydropyridine, or MPTP. Typically, it’s a discarded byproduct of heroin synthesis.

Several members of Govea’s family, including his father and stepsister, crowded into a bedroom to try it. Despite an initial burning sensation in his veins when injecting it, Govea remembers feeling the familiar rush of heroin. The man offered him an ounce to distribute, and Govea agreed.

Then Govea made the biggest mistake of his life: He began using his product. During the second week of shooting, up his limbs began to shake, one after another. “This leg, then this arm, then this leg,” Govea said. “Then I shot some more and this arm started.” In less than two weeks he had given himself symptoms of advanced Parkinson’s disease. Shortly after that, he was arrested for petty theft and sent to Monterey County Jail.

When he was released, his mother took him to several doctors who were baffled by his case. They diagnosed Govea with an unusual form of Parkinson’s disease, but they did not know, because he would not tell them, that his shaking had begun after dosing repeatedly with the Texan’s phony heroin.

Finally, Santa Clara Valley Medical Center doctors recognized his symptoms. They had seen a handful of similar cases, all caused by accidental dosing with MPTP. By figuring out that heroin use was the one thing Govea had in common with the other patients, the doctors linked his condition with intravenous MPTP injection.

The knowledge opened a window to the inner workings of Parkinson’s disease that changed the prospects of people suffering from it — including Govea — overnight. The Santa Clara doctors published their research in the journal Science. (Disclosure: The author’s father, J. William Langston, was one of the authors. He also co-authored a book in 1995: The Case of the Frozen Addicts.)

What MPTP did to Govea’s brain is very similar to what happens in the brain of a person with Parkinson’s disease. The chemical had eaten away the normal, dark-colored cells in a small area at the base of the brain called the substantia nigra (Latin for “black stuff”) — which is also damaged by Parkinson’s disease.

These cells normally produce dopamine, a neurotransmitter that allows brain cells to communicate with one another. Their dead area in Govea’s brain resulted in the abrupt onset of the symptoms of Parkinson’s disease: slowness, rigidity and tremor. Technically, however, Govea does not have Parkinson’s disease: The cause of his condition is known, unlike that of Parkinson’s. His case is extraordinary precisely for this reason.

To researchers, a chemical that essentially induces Parkinson’s is like a golden egg: rarely discovered and very valuable. Researchers could suddenly create an animal model of the disease, which provided unprecedented insights into new treatments. Deep brain stimulation eventually evolved out of the physiological and neuroanatomical understanding derived from studies performed with MPTP in animals.

But as the research was still ongoing, Govea’s condition worsened. He became emaciated and unable to eat, drink or use the bathroom by himself. His mother had taken to feeding him through a straw. “I’m tired of shaking,” he told her, “If I die, let me die.”

In August of 1981, he found brief respite. He was treated with a drug called levadopa, and his symptoms virtually vanished. But the medication caused hallucinations and delusions — side effects worse than the symptoms it was meant to treat. Govea blamed the “voices in his head” in 1982 when he was nabbed for a bank robbery in Greenfield, California. Several customers had recognized him by his tremor. He spent the next decade in Vacaville State Prison.

In 1991, about 90 days after his release, he said he began hearing voices again. They told Govea to rob a liquor store at knifepoint, which he did. He was sent back to prison and in 1995 at Pelican Bay State Prison, he attacked a guard and was charged with attempted murder. He pleaded not guilty by reason of insanity and was sentenced to a minimum of 31 years at Atascadero State Hospital, a term he now serves.

“He did not do well when he first came,” said David Curtis, his former social worker. He was extremely violent, assaulting patients and hospital employees. On top of that, by the late ’90s another side effect of levadopa called dyskinesias, involuntary jerking and swaying movements, had become so bad that it occasionally cut off his breathing.

Some MPTP victims sent to Sweden for treatment with fetal cells had varying degrees of success (the subject of The Case of the Frozen Addicts), but Govea wasn’t considered a good candidate for the experimental therapy because of his criminal status and other details of his case — a blessing in disguise, as it turned out.

In 2001, in a last-ditch effort to help Govea, the doctor assigned to the hospital’s medical unit, Dr. Linda Kocsis, asked him if he would be willing to undergo an experimental procedure, called deep brain stimulation, to treat his tremor. Govea said she told him: “You’d be like a guinea pig.”

When Govea underwent the procedure in 2003, a small hole was drilled in his skull, and an electrical wire — about the thickness of a strand of spaghetti — was inserted into a small area called the subthalamic nucleus, part of the complex basal-ganglia system associated with steady muscle control. The wire was then connected to a battery pack, which generates a pulsing electrical current. Doctors implanted the battery in his abdomen in a separate operation (it’s now typically placed under the collar bone).

“It is the predominant way people get surgical treatment for P.D. these days,” said Dr. Chad Christine, a neurologist at UCSF, who is lead author of a forthcoming study on the technique.

Steven Gulie receives deep brain stimulation, which he wrote about for Wired magazine.
The electrical stimulation alleviates the symptoms of Parkinson’s disease, though no one knows exactly how. The most basic answer is that deep brain stimulation is setting up an interference pattern for abnormal electrical activity in the brain. “Like a jamming mechanism,” Christine said.

Electrical firing patterns are abnormal in patients with Parkinson’s disease. The subthalamic nucleus is firing too frequently, and its pattern is erratic, causing the motor system to go on the fritz. Deep brain stimulation could either be interfering with this activity or, alternatively, “reasserting a more normal rhythm to this part of the brain … a more normal firing pattern,” Christine explained. Some scientists think the data indicate that its effects are even better than that. To meet Govea is to see why.

Four years after his surgery, Govea’s symptoms are still under control. “Look at my hand,” he said, holding it perfectly still. He takes his own pills now, and he can read the newspaper without tearing it apart. Deep brain stimulation has “just changed my whole life,” he said.

That’s the irony of Govea’s story. Advancements in the understanding of Parkinson’s disease were made possible by the discovery of MPTP, which was made possible by Govea’s fateful dosing with the drug. It also led to the development of deep brain stimulation. In essence, Govea has received a treatment developed from research done with the very chemical that gave him the disease being treated.

Sometimes Govea still finds himself sitting on his hands, or walking with them pressed against his sides — reminders of a time when his shaking was uncontrollable. Govea is still incarcerated at Atascadero, but he is no longer plagued by the side effects of his medications or the symptoms of his disease. In that sense, at least, he is a little closer to being free

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September 23, 2007 by mike.

Grant from the Michael J. Fox Foundation Funds Project

Researchers from the University of Maryland School of Medicine and the Baltimore VA Medical Center have launched a study to see if exercising several times a week will help people with Parkinson’s disease improve their walking and balance. A $750,000 grant from the Michael J. Fox Foundation is funding this multi-year project.

“Our main goal is to see if these exercises improve the mobility of Parkinson’s patients,” says Lisa M. Shulman, M.D., principal investigator and associate professor of neurology at the University of Maryland School of Medicine. Dr. Shulman is also co-director of the Parkinson’s Disease and Movement Disorders Center at the University of Maryland Medical Center.

She adds, “Parkinson’s patients tell us that when the disease begins to affect their ability to walk, their entire life is affected. They have trouble with daily activities such as dressing, housekeeping, shopping and getting around their community. That’s why we are so interested in studying if exercise can help these patients improve their gait and balance, because it is so fundamental to their daily lives.”

The project will enroll about 70 participants to compare the potential benefits of three types of exercise. The first group will walk on the treadmill at a comfortable pace, but with increasing duration as the training progresses. Researchers want to see if the repetitive gait training is sufficient to improve mobility. Participants in the second group will receive treadmill training with aerobic conditioning: trainers will safely and gradually increase the incline and speed of the treadmill in an attempt to improve the participants’ cardiovascular and aerobic conditioning. The third group will be using weights and stretching exercises to improve their muscle strength and range of motion. Participants will train three times a week for three months.

“Parkinson’s patients often ask their doctors if they should exercise and, if so, what kind of exercise they should do,” says Dr. Shulman. “However, there haven’t been any rigorous studies focusing on the effect of exercise in Parkinson’s disease. We are excited about this study because, at the end of our research, we hope finally to have some definitive answers for our patients.”

Researchers will use several timed tests of gait to measure progress. All participants will also be evaluated with specialized pedometers to see if there are any increases or decreases in their daily activity over the course of the study. As part of the research, the participants’ heart rates, oxygen use and blood pressure will be measured, monitored and compared after the study’s completion. Investigators will also evaluate muscle strength before and after the exercise program.

The Parkinson’s project builds on previous studies of treadmill training for stroke patients. This research, also conducted at the University of Maryland School of Medicine and the Baltimore VA Medical Center, examined whether the consistent, repetitive motion of walking could help the brain to “rewire” itself, developing new connections to compensate for the damaged ones, a concept known as brain plasticity.

“We have shown that regular exercise on a treadmill can improve stroke patients’ walking ability even years after they’ve had a stroke,” says study co-investigator Richard Macko, M.D., director of the Maryland Exercise and Robotics Center of Excellence at the Baltimore VA Medical Center and professor of neurology at the University of Maryland School of Medicine. “Now we are interested to see if this same concept will work for other neurological conditions such as Parkinson’s disease.”

The training will take place in the Baltimore VA’s Geriatric Research, Education and Clinical Center, a gym facility with special equipment for people who may have some physical limitations. Since Parkinson’s patients may already have some gait problems, they will wear a safety harness while walking on the treadmill and will be carefully supervised. The patients will walk for about a half-hour during each session, but the time will be individualized and adjusted over the course of the training.

The researchers are also interested to see if regular exercise provides emotional benefits as well. The study will evaluate whether the exercise has an effect on depression, apathy and fatigue — emotional symptoms of Parkinson’s that may not respond well to traditional medications.

Parkinson’s disease affects about one million people in the United States. Most people begin to develop Parkinson’s symptoms in their late 50s or early 60s, although it can occur in younger people.

Parkinson’s disease affects the brain’s ability to produce dopamine, the neurotransmitter involved in the communication between the brain cells for motor control. Symptoms include rigidity of the limbs and difficulty initiating movement. Many patients have a tremor that may involve the arms or the legs. Problems with walking and balance are an increasing cause of disability over time.

Parkinson’s patients interested in enrolling in the exercise study should call 443-827-0677.

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September 9, 2007 by mike.

Lonnie Ali has been a caregiver to her husband, Muhammad Ali, who has been in the fight of his life since being diagnosed with Parkinson’s disease (PD) more than 20 years ago. Throughout this challenging time she has been in his corner, and now Lonnie is championing Fight For MORE, a national educational campaign that provides resources and tools for Parkinson’s patients and their caregivers.

PD is a chronic progressive disorder of the central nervous system that affects more than 1.5 million people in the United States. For the millions of PD caregivers, the Fight For MORE Web site at www.FightForMORE.com provides community connections, inspirational stories, information of new treatment options and educational materials, such as a caregiver tip sheet. Developed with Lonnie Ali and a leading PD specialist, Dr. Rajesh Pahwa, Professor of Neurology and Director of the Parkinson’s Disease and Movement Disorder Center at the University of Kansas Medical Center, this caregiver resource provides useful tips based on Lonnie’s real-life experiences.
“While my husband is and always will be a fighter, I believe everyone affected by PD needs someone in their corner,” says Lonnie. “The fight against PD is a team effort that can only be effective when everyone is working together. I’m supporting the Fight For MORE campaign because it empowers caregivers with the knowledge and resources they need to make a difference in the lives of the people they love.”

A recent national survey found that nearly three in five PD caregivers felt a need for more support and education. The majority of these caregivers reported difficulties managing PD medication side effects, as well as the high number of medications patients take.

“One of the biggest challenges that patients and caregivers experience is managing treatment schedules and getting the most active ‘on time’ possible,” said Dr. Pahwa. “This campaign will help patients and caregivers know about new resources, including some of the treatment options that can provide more active ‘on time’-time when patients have less symptoms and their disease is more in control.”
Visit the Fight For MORE Web site at www.FightForMORE.com to learn more about the campaign. Valeant Pharmaceuticals will donate $10 to the Parkinson’s Unity Walk for each person who visits www.FightForMORE.com and signs up to support the campaign, up to $100,000. Unity Walk is the nation’s largest grassroots fundraiser for PD research.

“The Parkinson’s Unity Walk is encouraged to know that the Fight For MORE campaign recognizes the important role of the caregiver,” said Carol Walton, Executive Director and Board Member of the Parkinson’s Unity Walk. “You can visit the Web site to support the campaign to raise funds for Parkinson’s research and support those that endure this disease.”
By openly sharing her story, Lonnie Ali hopes to encourage others to become a part of the Fight For MORE campaign.

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September 9, 2007 by mike.

Consumers searching for information on Parkinson’s disease, a progressive neurological condition that affects more than 1.5 million Americans, now have a new online destination. The Parkinson’s Disease Blog Network (http://www.parkinsonsblognetwork.com) is the first site to centralize these individual perspectives, helping consumers to quickly identify the most relevant and useful information for any given situation. Oversight by an advisory board of patients and medical experts ensures content accuracy.

“The Parkinson’s community is highly motivated, frequently turning to the Internet as an outlet for support and information once they or a loved one have been diagnosed,” said Dr. Neal Hermanowicz, a member of the Parkinson’s Disease Blog Network advisory board and professor in the department of neurology and director of the Movement Disorders Program at the University of California, Irvine, College of Medicine. “The Parkinson’s Disease Blog Network provides a reliable, centralized online source for those pressed for time or limited by access or ability.”

The Parkinson’s Disease Blog Network was developed and is maintained by Incendia Health Studios, an inVentiv Health company. It has been designed to serve as a real-time, virtual Parkinson’s disease discussion and community forum, allowing users to exchange information and thoughts on topics ranging from symptoms to diet and treatment. All blogs registered on the network are listed with a brief descriptor and assigned to one of three categories: resource, medical or personal. Each includes a space for user comments, a five-point rating scale and also tracks the number of “views”. This allows the blogs found to be the most useful to be most prominently featured.

Kate Kelsall, author of the site’s top-rated blog, Shake, Rattle and Roll, explains, “Many of us with Parkinson’s disease feel isolated and lonely. Even after diagnosis, we are scared of what lies ahead. Connecting online with others who have the same disease can be reassuring. By sharing hopes and providing support for each other, we find commonality and realize we are not alone.”

Support for the development of the Parkinson’s Disease Blog Network was provided by Valeant Pharmaceuticals International. To learn more or register your blog, visit http://www.parkinsonsblognetwork.com.

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September 9, 2007 by mike.

By ARENA WELCH
Eagle Staff Writer

Two nationally recognized researchers hope to help the public break through the cloud of mystery surrounding Parkinson’s disease next week during a neurosciences symposium in College Station, officials said.

“Parkinson’s is still a disease with a lot of question marks around it,” said Tim Ottinger, a spokesman for St. Joseph Regional Health Center.

“Although treatment is advancing, it’s certainly not where physicians, scientists and patients would like it to be.”

Parkinson’s is a degenerative disease characterized by tremors, stiffness, slowness of movement and instability of posture, according to the National Institute of Neurological Disorders and Stroke.

Dr. Mahlon DeLong, a professor of neurology at Emory University School of Medicine, will discuss the current treatment methods of those afflicted with Parkinson’s disease, including medications and surgery.

Mark Cookson, a senior research fellow at the National Institutes of Health, will speak about what’s coming in terms of research into the treatment of Parkinson’s disease.

The public session will be from 10 a.m. to noon Friday at the Annenberg Presidential Conference Center at Texas A&M University.

The event will be followed by a symposium for physicians, scientists and researchers.

The free event is being hosted by the Texas Brain and Spine Institute, a collaboration of local physicians, health care professionals, scientists and researchers.

Dr. Jonathan Friedman, director of the Texas Brain and Spine Institute, said that the number of people diagnosed with Parkinson’s is increasing as the population gets older, so it’s important to keep up with new information in the field.

“We don’t have a cure, so any developments along those lines, even in the next couple of years - or 10 to 20 years from now - could make a dramatic difference in people’s lives,” he said.

To register for the public session of the symposium, call 731-1231.

• Arena Welch’s e-mail address is arena.welch@theeagle.com.

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September 8, 2007 by mike.

This is an informational page on Parkinson’s disease. For information on the social security disability process, including advice, tips and how the disability evaluation system works at the intial claim, reconsideration, and disability hearing levels, you may follow the link at the top of this page that leads to Disability Secrets.com or, if you are considering representation, you may scroll to the bottom of this post and submit a case evaluation form.

Parkinson’s Disease is a chronic degenerative neurological disorder that adversely affects an individual’s motor functioning. Most individuals suffer from idiopathic Parkinson’s disease.

What is meant by idiopathic? Simply that the cause of the disease is not known. However, a small percentage of Parkinson’s cases can be attributed to genetics, toxins, drugs (especially treatment with anti psychotics), and head injury.

No matter what the cause of an individual’s Parkinson’s disease, the symptoms are basically the same. Symptoms of Parkinson’s might include the tremors, muscle rigidity, gait problems, fatigue, speech impairment, difficulty swallowing, slowing of higher brain functioning, slowing of physical movement or loss of movement all together. Additionally, many individuals who have Parkinson’s also suffer from significant depression problems.

Studies have indicated that up to eighty percent of all Parkinson’s patients also have problems with depression.

Although Parkinson’s is not considered to be fatal, the progressive nature of the disease usually causes a shorter life span. As the disease progresses, Parkinson’s patients are more susceptible to pneumonia, choking, and falls, which may lead to death.

Currently, there is no known cure for Parkinson’s disease, although there are some medications and surgical procedures that are being used in an effort to reduce the symptoms.

In addition to drugs and surgical procedures, many physicians suggest that speech therapy, physical exercise, patient and family education, and good nutrition should be part of a multi faceted Parkinson’s treatment plan.

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