Actor/activist Michael J. Fox and boxing legend Muhammad Ali get the spotlight and garner the headlines as people with Parkinson’s disease, but the National Parkinson Foundation (NPF) estimates there are about 1.5 million U.S. men and women with Parkinson’s, a disorder of the central nervous system.

Parkinson’s is more common in men, including three out of every 100 people over 60 years old, and more than 50,000 Americans are diagnosed with it each year, according to the nationally-acclaimed Cleveland Clinic. The Journal of Neurology, Neurosurgery, and Psychiatry figures one in 500 Britons, around 120,000 people, have Parkinson’s and about 10,000 are diagnosed each year.

Experts contend that getting an accurate count may be impossible because many people in the early stages of the disease assume their symptoms are normal aging and they don’t seek help from a physician.

Overall, U.S. society pays an enormous price for Parkinson’s disease. According to the NPF, each patient spends an average of $2,500 a year for medications. After factoring in office visits, Social Security payments, nursing home expenditures, and lost income, the total U.S. cost is estimated to exceed $5.6 billion annually.

Dopamine levels
The central nervous system includes the brain and spinal cord and controls everything you do, particularly moving. Gradually, someone with Parkinson’s loses the ability to control body movements. In the deep brain recesses are nerve cells (or neurons) that help control movement; known as the basal ganglia (bay-sul gan-glee-ah), in someone with Parkinsonۥs these nerve cells are damaged and don’t work as they should. Normally, these cells make and use a chemical called dopamine (doh-puh-meen) to message other brain parts to coordinate movements. When someone has Parkinson’s, dopamine levels are low, so the body doesn't get the right messages to move normally.

As Parkinsonۥs develops, a person may slow down and have difficulty speaking normally. Sometimes speech therapy and occupational therapy are needed, and someone with the disease may need to learn how to fall down safely. If getting dressed is hard, clothing with Velcro and elastic can be easier than buttons and zippers. The person also might need railings installed around the house to help prevent falls.

The Nemours Foundation states experts don’t really know why the nerve cells that make dopamine get damaged and die. Some believe a change in a specific gene could explain it. Others think it could be something in the environment, such as pesticides or other chemicals. While no one knows the exact cause, Parkinsonۥs was first described in 1817, when English physician Dr. James Parkinson called it “Shaking Palsy.” Later, the disease was named after him.

Relatively healthy
The National Institute of Neurological Disorders and Stroke, part of the U.S. National Institutes of Health (NIH), states the four primary symptoms of chronic Parkinson’s are tremor in hands, arms, legs, jaw, and face; rigidity or stiffness of the limbs and trunk; slowness of movement; and impaired balance and coordination. Patients may have difficulty walking, talking, or completing other simple tasks, and “no drug can stop the progression of the disease.”

Parkinsonۥs symptoms appear gradually and usually worsen over time, but because it usually develops slowly, most people with it can live a long and relatively healthy life. Signs usually appear after age 50 and become more common with advancing age. Although heredity’s role isn't completely clear, it’s knows that if a close relative—parent, brother, or sister—has Parkinsonۥs, there’s a greater risk of developing Parkinsonۥs, which isn’t contagious.

Bradykinesia, or slowing down and loss of spontaneous and automatic movement, is particularly frustrating because it’s unpredictable. One minute the patient can move easily; the next moment he or she may need help. This may be the most disabling and distressing symptom of Parkinson’s because the patient can’t perform routine movements rapidly.

Patient faces may appear without expression, but patients continue to have feelings, even though their faces don't always show it. The disorder has no effect on thinking or memory. Balance woes cause some people with Parkinson’s to fall a lot, which can result in broken bones; some may also feel depressed and lose interest in things they used to do.

Possibility exists
A relatively new theory explores the role of genetic factors in Parkinson’s development: 15-20 percent of patients have a close relative who has experienced symptoms. Investigators are interested in the possibility that impairment in mitochondrial DNA may cause Parkinson’s. Another theory is that Parkinson’s occurs when, for unknown reasons, the normal age-related wearing away of dopamine-producing neurons speeds up in certain individuals.

A Journal of Neurology, Neurosurgery and Psychiatry study noted the most likely culprit for a “gender gap” for Parkinson’s may be the “heightened vulnerability of male offspring to a genetic mutation passed down by their mothers.”

In late stage Parkinson’s, drug side effect will most often be psychiatric (hallucinations, vivid dreams). Parkinson Society Canada (PSC) explains that it is “important to watch for side effects, as medication may need adjustment. Swallowing can be a major problem for a person with Parkinson’s, so medication must always be accompanied by a glass of water, and patients shouldn’t break, crush, or chew controlled-release tablets unless instructed by their physician. Medication management is the most important part of controlling Parkinson’s symptoms.”

PSC’s National Information & Referral Centre notes patients will probably be constipated, and symptoms and responses to medication differ greatly in each person. PSC relates that the “masked” look is a symptom—stiffness or rigidity affects muscles, including facial ones. Parkinson’s can cause the voice to lose volume and become monotone; saliva can collect in the front of the mouth, resulting in spillage. “It’s important to stress Parkinson’s isnۥt a mental disease, although 30 percent of people with Parkinson’s will develop dementia.”

‘Unnecessary suffering’
For Parkinson’s patients in assisted living arrangements, the Cleveland Clinic suggests consideration of what services are needed. A good plan covers a talk with family and caregivers about what services are important prior to assisted living community visits.

Also, consider these questions:
• Why do I want/need to change my living arrangements?
• What daily activities do I need help with (bathing, dressing, toileting, eating, remembering medications)?
• How often do I need help?
• Is the residence licensed?
• What type of insurance does the facility carry on personal property?
• How do they respond to medical emergencies?
• What is the visitation policy?
• Is a contract available to include accommodations, personal care, healthcare and support services?
• When may a contract be terminated and what is the refund policy?
• Is staff trained and dressed appropriately?
• Is staff available to assist residents who experience memory, orientation, or judgment losses?
• Do residents socialize and appear happy and comfortable?
• Do residents, visitors, and volunteers speak favorably about the facility?

Britain’s Nursing Standard publication noted many people with Parkinson’s “experience unnecessary suffering when they are admitted to a hospital due to health professionalsۥ lack of awareness of the condition. Delaying drugs by minutes or omitting a dose altogether can render people with Parkinson’s helpless. Exchanging standard drug preparations for dispersible or controlled release drugs can also have a profound effect on symptom control and the management of side effects.”

Omega-3 fatty acids
There are no sophisticated blood or lab tests available to diagnose the disease. To diagnose Parkinson’s, a doctor (usually a neurologist)  relies on a person’s medical history, symptoms, and a physical exam. If the disease is suspected, there's reason for hope: medicine can be used to eliminate or improve symptoms such as body tremors, and some experts think a cure may be found in the near future. Levodopa (L-dopa) is often given to people who have Parkinson’s because it increases the body’s dopamine level and has been shown to improve a person’s ability to walk and move. In some cases, surgery may be needed.

Still, substantial research is ongoing.

The U.S. Dept. of Defense and the Institute for Neurodegenerative Disorders in New Haven, Conn., are evaluating potential screening tools for detecting Parkinson’s to test combining two biomarkers of Parkinsonism—sense of smell and brain imaging—with a radioactively labeled drug in a group of close relatives of Parkinson’s patients to find an “at risk” group without Parkinson motor symptoms.

Meanwhile, the U.S. Dept. of Health and Human Services’ Agency for Healthcare Research and Quality commissioned a study of the Effects of Omega-3 Fatty Acids on Cognitive Function with aging, dementia, and neurological diseases. The concept is that omega-3 fatty acids have beneficial effects on several conditions and disorders affecting the central nervous system. Investigators searched computerized databases to identify potentially relevant studies and contacted industry experts for unpublished data. A prior study of the effects of omega-3 fatty acids on occurrence of Parkinson’s “found no significant tie between consumption of omega-3 fatty acids and Parkinson’s.

In early December 2007, the Michael J. Fox Foundation for Parkinson’s Research allotted $2.5 million to fund five clinical studies to hasten scientific solutions that “can have a tangible effect on patients’ lives.” The awardees are: Dr. Roger Albin of the University of Michigan, on improving sleep disorders; Dr. Bastiaan Bloem of University Medical Center in The Netherlands, to study physical activity designed for people with Parkinson’s, and Dr. Jeff Bronstein of the University of California/Los Angeles, to test whether helicobacter pylori, a bacterium that infects the stomach and intestine, causes disturbances in Levodopa absorption.

Also, Dr. Elkan Gamzu, of NeuroHealing Pharmaceuticals Inc., will focus on excessive salivation that leads to drooling, and Dr. Paola Piccini, of Imperial College Division of Neuroscience in London, will visualize serotonin neurons before and after Levodopa administration and correlate serotonin changes to alterations in dopamine levels. She will also test whether a drug targeting a specific serotonin receptor reduces symptoms.

‘Time and support’
Some organizations working towards a cure are the American Parkinson Disease Association, Children Parkinson’s Disease (Nemours Foundation), National Parkinson Foundation, Parkinson Alliance, Michael J. Fox Foundation for Parkinson’s Research, Parkinson’s Action Network, Parkinson’s Disease Foundation, Parkinson’s Institute, Parkinson’s Resource Organization, Worldwide Education & Awareness for Movement Disorders, and Bachmann-Strauss Foundation Inc. at Mt. Sinai Medical Center.

The Parkinson’s Disease Society believes “it takes time and support to adjust to the effects of a condition that affects you, your family, and friends’ lives. How you’re affected and feel will depend on your own circumstances.” It’s normal for a caregiver “to feel many of the same feelings the person with Parkinson’s may be experiencing. It can be challenging if you and the person with Parkinson’s are at different stages in coming to terms with the diagnosis.” Like any disability or chronic condition, “Parkinson’s is something that people can learn to live with.”

Most of all, Nemours proclaims, “If you know someone who has Parkinson’s disease, try to be a friend.”

In his wheelchair in Jacksonville, FL, Herb Drill heads Able Me & Associates. His e-mail address is herbdrill@ableme.com. He has Muscular Dystrophy.