Building Your Care Team

Both general neurologists and movement disorders specialists care for people living with Parkinson’s. It takes about 12 years in the U.S. to become a general neurologist — a doctor who works with the brain and central nervous system conditions. This includes a four-year undergraduate college degree, four years in medical school and three to four more years of specialized training in a neurology residency. Some neurologists treat many people with Parkinson’s and are knowledgeable about the disease. However, most have diverse practices, of which PD represents only a small percentage.

A movement disorders specialist is more likely than a general practitioner or a general neurologist to help you build your care team, referring other healthcare professionals who may be able to help tackle day-to-day PD challenges. He or she may also be well-informed about local support groups and resources.

General neurologists and movement disorder specialists have a lot more experience diagnosing and treating Parkinson’s than general practitioners. Recent research underscores this point. A 2011 study showed that people newly diagnosed with Parkinson’s who went to a neurologist lived longer than those who saw a primary care provider, they were less likely to need placement in a skilled nursing facility and they seemed less likely to have experienced injuries from falls.

Another study that year found that people diagnosed with PD by a neurologist were more likely to receive an anti-PD medication prescription immediately upon diagnosis — the standard of care recommended by the American Academy of Neurology — than those who were diagnosed by a non-neurologist.

Finding a specialist can seem like a daunting task, but it doesn’t have to be. The Parkinson’s Foundation can help guide you.

• Find a medical center that provides expert care near you
• Contact the Parkinson’s Foundation Helpline at 1-800-4PD-INFO (1-800-473-4636) or Helpline@parkinson.org for a referral
• Ask your primary care physician for a referral
• Contact your insurance provider for a list of neurologists or movement disorder specialists in your network
• Seek referrals from other people living with Parkinson's

Once you locate qualified specialists, the next step is finding the right one for you.

• Check that your insurance policy covers all or most of the cost.
• Factor in travel convenience.
• Create a list of candidates. Check the internet for background on each doctor’s training, areas of expertise and research interests.
• Schedule an appointment with your first choice.

If you do not have a movement disorder specialist nearby, we recommend seeing a nearby general neurologist for most of your care and then traveling a longer distance a few times a year to see a specialist.

Call the doctor’s office to find out what to bring and if you can fill out the paperwork online in advance. In general, you should take:

• Laboratory or other test results from previous treatment for Parkinson’s symptoms.
• Files or CDs of brain imaging.
• Names and contact information for all doctors you see (internists, specialists).
• List 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 importantly, 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 went with you.

At your first visit, the doctor will take a thorough medical history and also ask about your family medical history and symptoms. He or she will conduct a physical examination and a neurological exam. The doctor will ask you to sit, stand and walk to observe your balance and coordination. The doctor may also order a brain imaging test to rule out other conditions.

Prepare a list of questions to help you better understand the doctor’s expertise and your treatment options. You likely will not be able to discuss them all in one visit. You may have more specific questions once you have a treatment plan.

Here are some questions you may want to ask:

• How many people with Parkinson’s do you treat?
• Do I need other tests to confirm my PD diagnosis or rule out other disorders that may present similar symptoms?
• What PD treatment options do you suggest?
• How do my other health conditions and medications affect my PD and how do I treat it?
• Do you know of any clinical studies that might be right for me?
• Are there lifestyle changes 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? 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.)

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.

Decisions about your treatment will be a collaboration between you and your doctor. Your symptoms and medications may change often. Your doctor should be prepared to work with you and your family. Having a positive relationship helps keep lines of communication open and ultimately is good for your health.