Parkinson's disease: preparing for an appointment

Treatment for Parkinson’s disease is typically overseen by a neurologist, a medical doctor that specializes in the treatment of diseases that affect the nervous system. Many people with Parkinson’s disease work with a movement disorder specialist, a neurologist that specializes in movement disorders.

Additionally, People who are living with Parkinson’s disease will work with a team of healthcare providers with different specialties. This team can include physical and occupational therapists, speech-language therapists (who also treat swallowing problems), a social worker, nutritionist, nurses, and a provider that specializes in mental health.

Good communication between the different members of a healthcare team is essential to getting the best care possible, and it’s important to remember that you are also an important member of a healthcare team.

If you are living with Parkinson’s disease or are a caregiver for a person living with Parkinson’s disease, your different healthcare providers will rely on you to communicate changes in symptoms, unmet needs, and side effects. Parkinson’s disease affects everyone differently, and treatment needs vary from person to person.

Strategies for successful appointments

As a person with Parkinson’s disease or a caregiver, one of the most important things you can do is go to your appointments prepared.

Before an appointment

• Create a list of what you want to discuss—the topics you want to cover, the questions you have. Prioritize the questions and topics that are most important for this appointment.
• If your healthcare provider has requested any information—such as medical records, test results, or other paperwork—gather this information ahead of time.
• If you’re unsure about something—like how long an appointment will take, or what to wear to a physical therapy appointment—call ahead and ask.
• Make a list of what you need to arrange before the appointment—like requesting off from work or help with transportation—and plan out the day.
• Consider bringing a family member or friend to take notes and provide support.

At your appointment

• Update your provider about any changes in symptoms, such as changes in movement, coordination, and speech.
• Discuss any changes in how the person with Parkinson’s disease feels, including moods, energy level, sleep habits, or medication side effects.
• Discuss anything that has become more difficult, challenging, or frustrating. This can be something related to movement or balance, something related to moods or motivation, or something that you are concerned about.
• Ask for any materials that you can take home to learn more about Parkinson’s disease, treatment, and support for people affected by the condition.

Discuss treatment and next steps

• Review any medications that are currently a part of treatment for Parkinson’s disease.
• Review any non-medication therapies that are part of your treatment plan, such as physical therapy, occupational therapy, and speech therapy.
• Ask your healthcare provider if they recommend any changes to your current treatment plan and why they recommend those changes.
• Tell your healthcare provider if there are any parts of the treatment plan that you feel are not working well—for example, side effects from medications or “off” times (where symptoms become worse between doses of medications).

If you are prescribed a new medication or therapy

• Ask how the therapy works and why it’s recommended.
• Ask what kind of result you can expect from this therapy.
• Ask about the potential side effects or other risks involved.
• Ask what the therapy costs.
• If you are prescribed a medication, ask if it can interact with other medications you are taking.
• Keep a list of all medications that you or your loved one is taking and make sure all of your healthcare providers have an updated list. This list should include medications for Parkinson’s disease, medications for other health conditions, over-the-counter medications, and any supplements and/or vitamins.

After each appointment, know the next steps. This includes prescriptions, follow-up appointments, accessing medical records or test results, and who to contact if you have a question.