Take Control of Parkinson's Disease!

Robert W. Griffith, MD
April 12, 2002 (Reviewed: April 4, 2004)

We hear more and more about 'Patient's Rights', but not all of us understand what patients have to do to ensure they get the care that they are entitled to. Dr Robert G Feldman, Medical Director of the American Parkinson Disease Association Information and Referral Center, has written an excellent overview, addressing the particular needs of the Parkinson patient. But the article is also relevant for people with many chronic illnesses. We reproduce it in full here. Robert Griffith, Content Editor, HealthandAge.com.

Taking Control of Parkinson's Disease by Robert G Feldman MD

When initially diagnosed with Parkinson's disease (PD), most patients know little about the disease. Some individuals have been bluntly told, "You have Parkinson's disease. Here is your prescription. Come back in six months." Most patients are distressed and too overwhelmed to ask meaningful questions. They may also be intimidated by the physician and reluctant to ask questions. However, knowledge gives you the power to avoid becoming a victim of the disease.

The Parkinson's patient must develop and retain a sense of control over his or her life. At each stage in the progression of the illness, the patient is faced with actual and perceived losses that require special considerations and that place unique burdens on the patient and members of his/her family. Energy spent on hiding the diagnosis may impede the adjustment process and lessen the quality of a patient's life.

Entitlement to control your own care

Since ancient times great physicians such as Galen, Aristotle, Hippocrates and Maimonides have expressed the opinion that the patient should be enlightened and take an interest in his own health and well being. For that reason many of these early physicians were commissioned by their patients to write reports explaining the reason for their malady and what could be expected from the recommended remedies.

In the 12th century Maimonides wrote that the "layman should learn by heart many of the teachings of his physician." In one of his reports to a patient, Maimonides laid out instructions for a regimen to be followed in accordance with the patient's particular ailment. It also offered alternative treatments to be undertaken if a physician were not to be found. In addition, it instructed the patient how to proceed when an available physician was deficient in knowledge and not to be trusted. In other words, the patient was encouraged to use his own good judgment. Thus, this medieval teacher and physician was telling his patients to be responsible for their own care and to be critical of the care that they received. Patients still have the obligation to themselves and their loved ones to find the best medical care and to follow the instructions they are given.

To the contemporary patient with Parkinson's disease, the Patient's Bill of Rights defines entitlements to the control of his or her own care. The patient has the right to honest and accurate information, access to his medical records and an adequate amount of time for clear instructions and directions by his healthcare providers. You may not be aware that there is also a Physician's Bill of Rights. After a physician has clearly explained his instructions and is content that his patient understands them, he may rightfully expect his patients to follow those directions. This is the key to effective patient therapy.

Make the most of your office visit

An undiagnosed patient comes to the neurologist with great anxiety. As he waits to see his neurologist he may fear the worst possible diagnosis. (Might it be a brain tumor?) However, many patients are relieved when definitive diagnosis of Parkinson's disease provides a logical explanation for their symptoms. This is enhanced with the assurance of many effective treatments for the disease. Each office visit must include two-way communication between the patient and doctor.

Here are several ways the patient can utilize office visits to his/her best advantage:

First, the non-victim patient sets the agenda so that each visit will meet his or her needs. The patient should come prepared with a list of questions and concerns. He should also be prepared to describe any new symptoms since the previous visit. If there are no new problems, then the patient should state that at the onset of the visit.

A complete medication list should be brought with you so your medications can be reviewed for:

• possible side effects
• the timing of the medications
• the duration of their expected effect
• the benefits that you believe are to be derived from each dosing
• the need for prescription renewals.

Ask additional questions. These may not be specifically related to Parkinson's disease, but may instead relate to work, family matters, sexual problems or even concerns over the fees paid for your medications and/ or the office visits.

Assist the staff in your physician's office by filling and renewing your prescriptions before you run out. Failure to do this results in unnecessary stress for both you and them. Determine the date of the next visit and before you leave the office be certain you understand the instructions you are to follow in the interim.

Be sure that everything on your agenda is addressed. If something is not dealt with, ask whether it is going to be addressed at a later date (or if it is considered a non- issue by your physician). Both your time and your physician's time are valuable and must not be wasted. Just as he should pay close attention to your concerns, you must pay close attention to his explanations.

Record and memorize the information received at each visit. Take notes or, even better, tape record your visit. This will allow you to review what was said when you get home, share accurate information with your care-partner and use it to set a plan of action. The information you bring home with you from the office is as important as your prescription refills.

Conclusion

If you optimize the partnership between yourself and your physician, you will learn how to not be a victim of Parkinson's disease. Owning your problem and accepting responsibility for your life will reduce the impact Parkinson's disease has on you and your quality of life.

Source

• Taking control of Parkinson's disease. The American Parkinson Disease Association, Inc. RG. Feldman, Quarterly Newsletter, Winter, 2001-2002

Related Links
The American Parkinson's Disease Association, Inc.
Do You Intend To Be a 'Responsible' Patient?

Please take a moment to give us your comments. For questions about Health matters you may check our "Questions & Answers" Portal and Service.