It used to be that doctors were in charge of your health care. You sought their advice and took it, often with no questions asked. Today we know that when you are engaged and informed about your own care, you are healthier.
For Parkinson's patients, finding the right treatment plan that offers the greatest relief from symptoms with the fewest side effects can be an ongoing challenge. Treating your Parkinson's is not just the doctor's job. There's a lot you can do to stay as healthy as possible for as long as possible. To do that, you need to ask yourself candid questions about your care and your health.
You also need to be willing to make changes if you find you're not satisfied. Assessing your care is an ongoing process. You can begin by following these steps.
Learn all you can about Parkinson's disease.
Find out all you can about how Parkinson's progresses, your prognosis, treatment options and side effects. The more you know, the more active you can be in your own care.
Use the Internet to find out about the latest drug trials, surgical procedures and recent research. A Web search on the disease yields 27,000 results-and no guarantees of quality, credibility or accuracy. New Hope for Parkinson's Program has gathered a list of reputable Web sites that provide a good starting point for a Web search. (Click on Understanding Parkinson's and Other Resources .)
Evaluate your physician.
Ask yourself: Am I getting the best possible care under the direction of this physician? While many general neurologists are capable of managing Parkinson's disease, physicians with extensive experience in Parkinson's and movement disorder specialists spend the majority of their time dealing with the nuances and subtleties of the disease.
"Parkinson's is very complex," explains Jerrold Vitek, M.D., Ph.D., a neurologist and neurophysiologist at Emory University. "Understanding the disease and the problems associated with it are what experts bring to treatment. Medical therapy can be relatively complicated. It involves adding a drug, decreasing another, knowing how much to add, when to add it and how far to space the medications apart. Experienced specialists are experts at manipulating medications to benefit Parkinson's patients."
Communicate with your physician.
Effective treatment requires open and consistent communication between the patient, caregivers and the doctor. Share with your doctor quality of life issues, side effects and frustrating changes. Don't be afraid to ask about your treatment plan, new and experimental therapies.
Having Parkinson's means you may be seeing a number of health care professionals. Maximize the benefit of working with this team by making sure information about your condition is shared among them.
Finally, encourage caregivers to attend your doctor appointments. "Often, it is my husband who catches changes in my Parkinson's and is better able to assess the state of my condition.
He gives a different viewpoint than mine to the doctor," says Jill H., 47, who was diagnosed in 2002.