Seeking Out A Parkinson’s Specialist to Optimize Your Care

Managing Parkinson’s disease is a challenge for anyone who is touched by it. Doing it well may require you and your loved ones to take on a variety of important tasks, from adjusting work or retirement lifestyles to committing to an appropriate exercise regimen. But none of these tasks is more important than finding the right doctor who knows Parkinson’s very well and will accompany you along the journey.

When the first symptoms appear, it is natural to begin by talking to your family doctor or internist. If that doctor suspects the presence of Parkinson’s, he or she may refer you to a general neurologist or a movement disorders specialist, which means a neurologist who had made a specialty of Parkinson’s and reconfirming the initial diagnosis and for managing Parkinson’s disease over the years.

PDF strongly advises people with Parkinson's to seek out a movement disorders specialist as the quarterback of their health care team. In some cases, for example, if you live far from an academic medical center or a specialist in private practice, PDF recommends receiving most of your care with a knowledgeable general neurologist nearby, and then traveling a longer distance to see a specialist two to three times a year. Either way, finding a specialist can be a daunting task. In this article, we explain what you have to gain by working with a specialist and guide you step-by-step through the process of finding one.

Which Doctors are PD Specialists?

Both general neurologists and movement disorders specialists care for people living with Parkinson’s. General neurologists are doctors who work with conditions of the brain and central nervous system. Becoming a neurologist in the United States requires a four-year college degree; graduation from lated disorders. This represents a crucial step for an accredited medical school; and an additional three or four years of specialized training in a neurology residency. General neurologists typically work in a private or group practice, or in a hospital. Some neurologists treat many people with Parkinson’s and may be quite knowledgeable about the disease. But most neurologists have diverse practices, of which Parkinson’s disease represents only a small percent.

Most movement disorders specialists are neurologists who have completed an additional one or two years of training (a fellowship) in movement disorders, a sub-specialty of neurology. Movement disorders specialists may see patients in a private practice or at university medical centers. Often they perform clinical or basic science research in addition to caring for patients. They may also teach young doctors who are on their way to becoming specialists.

People with Parkinson’s may constitute 50 percent or more of a specialist’s practice. With this level of experience, a movement disorders specialist will be more familiar with the range of available Parkinson’s medications, how they work, and their possible side effects. A movement disorders specialist is also more likely to discuss the role of clinical trials.

Finally, a movement disorders specialist is more likely than a general practitioner or a general neurologist to be aware of which additional health care professionals may be able to help you tackle the day-to-day challenges of PD. These may include physical therapists, occupational therapists, speech therapists or nutritionists. He or she may also be well-informed about local support groups and resources.

What a Specialist Can Do For You
Both general neurologists and specialists have a lot more experience diagnosing and treating Parkinson’s than does a general practitioner. Recent research underscores this point. One study reported that people newly diagnosed with Parkinson’s who went to a neurologist lived longer than those who saw a primary care provider — in fact, they were 20 percent less likely to have died after six years. In addition, they were 20 percent less likely to need placement in a skilled nursing facility (nursing home). And after one year of follow-up, they seemed less likely to have experienced injuries from falls — they were 14 percent less likely to have broken a hip. (Willis, et. al., Neurology, 2011).

Another report concluded that people whose PD was diagnosed by a neurologist were more likely to receive a prescription for an anti-PD medication immediately upon diagnosis — the standard of care recommended by the American Academy of Neurology — than those who were diagnosed by a non-neurologist. (Lage et. al., reported at the Annual Meeting of the American Academy of Neurology, 2011).

How to Choose a Doctor
Once you have located a few qualified specialists, (see right for tips on finding one) the next step is to find one who is right for you. Consider the recommendations you have received from others; check your insurance policy to make sure that it will cover all or most of the cost of services; factor in your own convenience (travel, etc.), and come up with a short list of candidates. Then browse online to learn about the doctors’ training, their areas of expertise and their research interests. Then schedule an appointment with your first choice.

What to bring to the initial visit. Call the doctor’s office to find out what information is needed, and whether any paperwork can be filled out online in advance. In general, you should bring:

  • laboratory or other test results from previous treatment for Parkinson’s symptoms
  • films or CDs of brain imaging
  • names and contact information for all doctors you see (internist, specialists)
  • lists of your movement and non-motor symptoms (such as sleep disturbances or constipation)
  • list of all medications you take, and the actual pills, including over the counter drugs and supplements (name of the medicine, dose, how often you take it)
  • your insurance or Medicare card

Perhaps most important, bring a family member or friend who can take notes and help ask and answer questions. You will receive a lot of information during this visit. Later, it may help you to talk it over with the person who accompanied you.

What to expect from the doctor. At your first visit a PD specialist will take a thorough medical history, and also ask about your family medical history and your symptoms. He or she will conduct a physical examination as well as a neurological exam. Among other things, you will be asked to sit, stand and walk, so that the doctor can observe your balance and coordination. A brain imaging test such as CT (computerized tomography), MRI (magnetic resonance imaging), PET (positron emission tomography) or SPECT (single-photon emission computed tomography) may be ordered to rule out other conditions.

What to ask during the first visit. Prepare a list of questions that will help you better understand the doctor’s expertise and your treatment options. Most likely, you won’t be able to discuss all of them in one visit. Once you have a treatment plan, you may have more questions about specific issues. Here are some questions you may want to start with:

  • How many people with Parkinson’s do you treat?
  • Do I need additional tests to confirm my PD diagnosis or rule out other disorders that may present similar symptoms?
  • How do my other health conditions and medications affect my PD and how I treat it?
  • What options for treating PD do you suggest?
  • Do you know of any clinical studies that might be appropriate for me to participate in?
  • Are you aware of any new PD research and treatments?
  • Are there changes in lifestyle that can improve my PD symptoms?
  • If you are not available for me to contact you between visits, who may I communicate with, and how?
  • Should I get a second opinion, and do you have any suggestions of doctors for me to contact? This is common practice and a reputable doctor will not be offended by the question.

Making a choice. Beyond getting good medical advice, it is important for you to be comfortable talking to your doctor. Choose a doctor who answers your questions, puts you at ease and treats you with respect. Consider whether the doctor takes your opinions and questions seriously.

The beginning of a long relationship. Decisions about your treatment will be a collaboration between you and your doctor. Your symptoms and medications may change frequently. You should feel confident that the doctor you choose is prepared to work with you and your family over a long period of time. Having a positive relationship helps keep lines of communication open and ultimately is good for your health.

PDF strongly advises people with Parkinson’s to seek out a movement disorders specialist to serve as the quarterback of his or her health care team. Such specialists provide the best care for people with PD.