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Patient Education Forum
Parkinson's Disease
By by Germaine Odenheimer, M.D., University of Oklahoma Health Sciences Center


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You may have seen people whose hands shake and who move slowly and stiffly as they shuffle their feet while walking . One common cause of these symptoms is called Parkinson's Disease.


What is Parkinson's Disease (PD)?
Parkinson's Disease is a condition that causes a person to move and often think slowly. PD gets worse slowly over time. It can start with a stiff leg that may be mistaken for a muscle or joint problem. Because it often starts on one side of the body, it is common for a person to mistake early signs for the effects of a stroke. Early symptoms are stiffness, especially of arms and legs; and shaking in the hands (called a pill-rolling tremor), especially at rest and worsen when the person is tired or upset. Other symptoms are a stooped over posture; unsteady walking with a tendency to shuffle the feet; and overall slow body movements. Someone with PD may have handwriting that gets smaller and a voice that gets softer. Depression is a very common symptom with this illness. Other problems that can come later in PD are dementia, hallucinations and "freezing" episodes, in which the person gets stuck in the middle of a movement. Eventually, all physical activities become difficult. Constipation and sexual problems are also common. The most dangerous problems arise from falls because of unsteadiness, from pneumonia because of problems swallowing, and from severe disability after the disease has been present for a long time.

How common is it?
2 out of 1000 people, both men and women are known to have PD. That's more than 4 million people around the world, including over 500,000 cases in the US. Although it can occur in people under the age of 55, it is more common in older people.

How do you get PD?
As we get older we have a greater chance of getting PD. Some reports suggest that environmental toxins, such as pesticides, may increase the risk, but this is still controversial and not proven. We do know that exposure to at least one drug of abuse (a drug called MPTP) can cause PD. There have also been infections linked with the PD. It does run in some families, but many people with PD do not have a family history of it. A reaction between your genes and your environment may cause the disease to develop. We don't yet know for sure what those triggers are.

What causes PD?
We don't yet know why it happens, but certain cells in the brain that control movement stop working, degenerate and finally die. These cells produce the chemical dopamine which is needed to send the brain messages that allow for smooth muscle movement. As the amount of dopamine decreases, so does the ability to move easily.

What else can look like PD?
There are many other conditions that look like PD. Sometimes this is referred to as "Parkinsonism." Some common medications (especially those used to treat severe psychiatric problems) can give a person the exact same symptoms as PD. The difference is that in these cases, the symptoms usually go away after the medicine is stopped. There are other diseases that lead to brain cell death that can cause symptoms like PD. These include stroke, Lewy body dementia and progressive supranuclear palsy.

How is PD diagnosed, and what can I expect from the doctor?
Your doctor should do a careful medical examination and review of your medicines. In many cases, there is no need to do additional tests. But the provider may find symptoms or signs that make it hard to figure out the diagnosis. In that case, laboratory testing, a cat scan or magnetic resonance imaging (MRI) of the brain and perhaps a referral to a specialist may be made. If the diagnosis is clear, treatment in the early stages may be handled by your primary care doctor. However, as the disease gets worse, a specialist may be very helpful in guiding the treatment.

What are the treatments for PD?
There is no cure for PD, but there are treatments that improve symptoms and may even slow the progression. The most widely accepted treatment is levodopa, which enters the brain and is converted into dopamine (the chemical that is lost in PD). It is usually given in combination with carbidopa (carbidopa/levodopa ) which makes it easier for the levodopa to get into the brain where it works (is this true?). Carbidopa prevents levodopa from being broken dwon to dopamine outside of the brain, thus decreasing its side effects such as nausea. As the disease gets worse, you may need to take larger doses more often. However, there is a new group of medicines (COMT inhibitors - okay to name these) which make the most of levodopa by prolonging and smoothing out its effects. These agents may also delay the need to increase carbidopa/levodopa doses. "Dopamine Agonists"- okay to name these - are another common type of medicines used in treating PD. The list of medications for treating PD continues to grow. It is very important that any treatment plan for PD include a physical therapy program and a connection with a local support group. Surgical procedures (such as thalamotomy and pallidotomy) and deep brain stimulation used in PD are not available in many communities and should only be done at experienced centers.

How do I know when my loved one should stop working, banking, driving, or living alone?
These are often extremely difficult questions that need to be discussed with the doctor and other specialists. In general, potential for harm to your loved one or to others will force you to consider stopping certain daily activities. Doctors depend on your observations when making recommendations about such major life changes and can support you when you have concerns.

What else can I do as a caregiver?
Because you are so important as a caregiver to a person with PD, you must also remember to take good care of yourself. Caregivers can get depressed and can become sick because they ignore their own health needs. You need breaks from taking care of others. You need help at home. You need to eat, sleep, and exercise regularly. You need to forgive yourself for feelings of anger and guilt. A support group can get you through some very tough times that you are sure to face.

Where do I go for more information or support?
There are numerous organizations that offer information. The AGS recommends The National Parkinson Foundation. It can be reached at 1-800-327-4545. Its web page address is www.parkinson.org. This site can help you learn more about PD and locate local support groups.