Understanding Parkinson’s

Below please find a list of questions and answers that will help you begin to understand Parkinson’s in a further depth.

Q: WHAT IS PARKINSON’S DISEASE?

A: Parkinson’s disease (PD) is a progressive, neurological disease that mainly affects movement but can also affect cognition. Parkinson’s disease results from the destruction of nerve cells in a part of the brain called the basal ganglia.

Different parts of the brain work together by sending signals to each other to coordinate all of our thoughts, movements, emotions, and senses. When we want to move, a signal is sent from the basal ganglia to the thalamus and then to the cerebral cortex, all different parts of the brain. Nerve cells in the brain communicate by using chemicals. A chemical (neurotransmitter) called dopamine is produced in a group of cells called the substantia nigra and is essential for normal movement. When the cells die, they can no longer produce and send dopamine so the signal to move doesn’t get communicated. By the time a person starts to experience motor symptoms of Parkinson’s they’ve already lost approximately 50% of their dopamine producing cells. People may experience non-motor symptoms from loss of other neurotransmitters up to ten years before motor symptoms are noticed.

Q: WHAT ARE THE SYMPTOMS OF PARKINSON’S DISEASE?

A: Often, the first symptom of Parkinson’s disease is tremor (trembling or shaking) of a limb, especially when the body is at rest. The tremor often begins on one side of the body, frequently in one hand. Other common symptoms include slow movement (bradykinesia), an inability to move (akinesia), rigid limbs, a shuffling gait, and a stooped posture. People with Parkinson’s disease often show reduced facial expressions and speak in a soft voice. Occasionally, the disease also causes depression, personality changes, dementia, sleep disturbances, speech impairments, or sexual difficulties. The severity of Parkinson’s symptoms tends to worsen over time.

 

Q: CAREGIVING FOR PEOPLE LIVING WITH PARKINSON’S

A: Caring for a loved one with PD can be a challenging job, especially as the disease progresses. Former caregivers of a loved one with PD suggest doing the following (see more about these at the end of this fact sheet): Get prepared, Take care of yourself, Get help (don’t try to do it all yourself), Work to maintain a good relationship with your loved one, and Encourage the person with PD for whom you care, to stay active.

Preparing for caregiving starts with education. Reading this fact sheet is a good start. There are many more resources available to you in the Resources section of this fact sheet. Early Parkinson’s disease (PD) usually requires more emotional support and less hands-on care. It is a good time for family members/caregivers to educate themselves about the disease.

 

Q: HOW MANY PEOPLE ARE AFFECTED?

A: In the United States, at least 500,000 people are believed to suffer from Parkinson’s disease, and about 50,000 new cases are reported annually. These figures are expected to increase as the average age of the population increases. The disorder appears to be slightly more common in men than women. The average age of onset is about 60. Both prevalence and incidence increase with advancing age; the rates are very low in people under 40 and rise among people in their 70s and 80s. Parkinson’s disease is found all over the world. The rates vary from country to country, but it is not clear whether this reflects true ethnic and/or geographic differences or discrepancies in data collection.

 

Q: WHAT CAUSES PARKINSON’S DISEASE?

A: Although there are many theories about the cause of Parkinson’s disease, none has ever been proved. Researchers have reported families with apparently inherited Parkinson’s for more than a century. However, until recently, the prevailing theory held that one or more environmental factors caused the disease. Severe Parkinson’s-like symptoms have been described in people who took an illegal drug contaminated with the chemical MPTP (1-methyl-4-phenyl-1,2,3,6-tetrahydropyridine) and in people who contracted a particularly severe form of influenza during an epidemic in the early 1900s. Recent studies of twins and families with Parkinson’s have suggested that some people have an inherited susceptibility to the disease that may be influenced by environmental factors. The strong familial inheritance of the chromosome 4 gene is the first evidence that a gene alteration alone may lead to Parkinson’s disease in some people.

Q: HOW IS PARKINSON’S DISEASE DIAGNOSED?

A: Parkinson’s disease is usually diagnosed by a neurologist who can evaluate symptoms and their severity. There is no test that can clearly identify the disease. Sometimes people with suspected Parkinson’s disease are given anti-Parkinson’s drugs to see if they respond. Other tests, such as brain scans, can help doctors decide if a patient has true Parkinson’s disease or some other disorder that resembles it. Microscopic brain structures called Lewy bodies, which can be seen only during an autopsy, are regarded as a hallmark of classical Parkinson’s. Autopsies have uncovered Lewy bodies in a surprising number of older persons without diagnosed Parkinson’s — 8% of people over 50, almost 13% of people over 70, and almost 16% of those over 80, according to one study. As a result, some experts believe Parkinson’s disease is something of an “iceberg; phenomenon,” lurking undetected in as many as 20 people for each known Parkinson’s patient. A few researchers contend that almost everyone would develop Parkinson’s eventually if they lived long enough.

Q: WHO GETS PARKINSON’S DISEASE?

A: Exploring the relationship between Parkinson’s Disease and exposure to agents such as herbicides, pesticides, and other toxins. Parkinson’s disease, documented in 1817 by physician James Parkinson, is the second most common neurodegenerative disease after Alzheimer’s disease. Estimates regarding the number of people in the United States with Parkinson’s range from 500,000 to 1,500,000 with 50,000 to 60,000 new cases reported annually. There is no objective test for Parkinson’s disease so the mis-diagnosis rate can be high, especially when a professional who doesn’t regularly work with the disease makes the diagnosis.

Since Parkinson’s is more common in people 60 years old and older, it is expected that the incidence of Parkinson’s will increase with the aging of the baby boomers. Although PD is more common in older persons, some people do begin to experience symptoms before they are 40 years old. Researchers have identified families who experience an increased incidence of PD, with some showing a genetic relationship from known PD genes. However, genetic causes of Parkinson’s are rare, only in approximately 6-8% of all cases. Most people diagnosed with PD do not have family members with PD. Recent studies show there may be a genetic predisposition to developing PD, but environmental exposure to certain toxins (many years prior to symptoms) may be needed to develop the disease. One common expression is “genetics loads the gun, but environmental [exposure] pulls the trigger.” Epidemiological studies are actively

Q: WHAT TREATMENTS ARE AVAILABLE?

A: There is no cure for Parkinson’s disease. Many patients are only mildly affected and need no treatment for several years after the initial diagnosis. When symptoms grow severe, doctors usually prescribe levodopa (L-dopa), which helps replace the brain’s dopamine. Sometimes doctors prescribe other drugs that affect dopamine levels in the brain. In patients who are very severely affected, a kind of brain surgery known as pallidotomy has reportedly been effective in reducing symptoms. Another kind of brain surgery, in which healthy dopamine-producing tissue is transplanted into the brain, is also being tested. Finally, researchers are trying to identify substances that will prevent dopamine-producing brain cells from dying.

Q: WHO HAS PARKINSON’S?

A: As many as one million Americans live with Parkinson’s disease, which is more than the combined number of people diagnosed with multiple sclerosis, muscular dystrophy and Lou Gehrig’s disease.

Approximately 60,000 Americans are diagnosed with Parkinson’s disease each year, and this number does not reflect the thousands of cases that go undetected.

An estimated seven to 10 million people worldwide are living with Parkinson’s disease.

Incidence of Parkinson’s increases with age, but an estimated four percent of people with PD are diagnosed before the age of 50.

Men are one and a half times more likely to have Parkinson’s than women.

 

Q: WHAT DOES LIVING WITH PARKINSON'S COST?

A: The combined direct and indirect cost of Parkinson’s, including treatment, social security payments and lost income from inability to work, is estimated to be nearly $25 billion per year in the United States alone.

Medication costs for an individual person with PD average $2,500 a year, and therapeutic surgery can cost up to $100,000 dollars per patient.