Managing Parkinson’s disease (PD) well can be challenging. Finding a doctor who’s well-versed in PD and will help guide you on the journey makes it easier.
It’s natural to begin by discussing initial symptoms with your family doctor or internist, who may refer you to a general neurologist or one specialized in movement disorders to rule out Parkinson’s.
The Parkinson’s Foundation recommends people diagnosed with PD seek out a movement disorders specialist — one who can become a key player on your healthcare team. For people living far from an academic medical center or a specialist in private practice, we recommend a knowledgeable, nearby general neurologist for most of your care and then traveling a longer distance two to three times each year to see a specialist. Finding a specialist can seem like a daunting task, but it doesn’t have to be. The Parkinson’s Foundation can guide you step by step through the process of finding one.
Look for a Parkinson’s Specialist
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 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. General neurologists typically work in a hospital, or private or group practice. Some neurologists treat many people with Parkinson’s and are knowledgeable about the disease. However, most neurologists have diverse practices, of which PD represents only a small percent.
Most movement disorders specialists are neurologists who have completed another one or two years of movement disorders training, a neurology sub-specialty. Movement disorders specialists may see patients in a private practice or at university medical centers. They often perform clinical or basic science research in addition to caring for patients. They may also teach doctors who are 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 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 refer other healthcare professionals who may be able to help tackle day-to-day PD challenges. 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.
The Benefits of an Expert
General neurologists and specialists have a lot more experience diagnosing and treating Parkinson’s than a general practitioner. 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.
Choosing a Doctor
Once you locate qualified specialists, the next step is finding the right one for you.
- Consider recommendations you have received from others.
- 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.
Preparing for the Initial Visit
Call the doctor’s office to find out what to bring and if you can fill out paperwork online in advance. In general, you should take:
- 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 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.
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 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.
What to ask During the First Visit
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. Questions you may want to start with include:
- 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 I treat it?
- Do you know of any clinical studies that might be right for me to take part in?
- Are you aware of any new PD research and treatments?
- 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.)
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 often. You should choose a doctor that seems prepared to work with you and your family over an extended period. Having a positive relationship helps keep lines of communication open and ultimately is good for your health.
Finding a Doctor
- Contact the Parkinson’s Foundation Helpline at 1-800-4PD-INFO (473-4636) or firstname.lastname@example.org for a referral
- Search our resource map for healthcare professionals near you
- Ask your primary care physician for a referral
- Seek referrals from other people living with Parkinson's
- Contact your insurance provider for a list of neurologists or movement disorder specialists in your network
- If you live in a rural area, far from an academic medical center or a specialist in private practice, you may want to seek a referral for a general neurologist, a gerontologist or an internist. You may decide to receive most of your care from a general doctor who is close to home and then travel a longer distance to visit a specialist two or three times a year.