In July 2026, the American Parkinson’s Disease Association (APDA) hosted a webinar on strategies for communicating effectively with your doctors, for those with Parkinson’s disease (PD) and their care partners. Occupational therapist Sydney Settle discussed how to prepare for your appointments so you can make the most of your limited time with your doctor. Her advice was focused on talking with the neurologist, as the center of the care team for managing PD, but these strategies are useful for talking with healthcare professionals of any specialty.
These are the major points from the seminar:
- Appointments with a neurologist usually occur only one or two times per year, and often last about one hour; both their time and yours is very valuable! Prioritize discussing which symptoms are interfering with your daily life most.
- You are the center of your care team, and you know best how you experience your symptoms. Track your motor and non-motor symptoms, so your doctor can use concrete data to plan your treatment. Track your symptoms using whichever method you find most accessible.
- Ask a trusted person to join you, so they can help manage logistics, assist in answering your neurologist’s questions, and take notes so you can engage fully with the doctor.
You can find a lot of additional resources for preparing for your doctor appointments on the Stanford Parkinson’s website.
If you live in the Northern or Central California area, contact the Stanford APDA Information & Referral Center for names of movement disorder specialists.
Sydney suggested several times discussing your symptoms with others with PD. If you live in the Northern or Central California area, join a local PD support group! Find one on the Stanford Parkinson’s website.
A recording of the webinar is available on the APDA YouTube channel.
Below are my full notes.
– Jordan
“Strategies for Communicating Effectively with Your Doctor [about PD]”
Speaker: Sydney Settle, OTD, OTR/L, occupational therapist
Webinar Host: American Parkinson’s Disease Association (APDA)
Webinar Date: July 6, 2026
Summary by: Jordan Dagan, Stanford Parkinson’s Community Outreach
THE IMPORTANCE OF EFFECTIVE COMMUNICATION
As your PD progresses, both your motor and non-motor symptoms will become more severe. Each person will have a different combination of symptoms, and everyone will experience their symptoms differently. PD is best managed with a diverse team of healthcare professionals. This webinar is focused on preparing for appointments with your neurologist, but your team may include an occupational therapist, physical therapist, nutritionist, speech therapist, counselor and/or social worker. You are the center of your care team, and you know best how you experience your symptoms.
This webinar focuses on the neurologist as the key member of your care team. Your neurologist’s focus is on treatment of your PD symptoms via medication or surgery, and they’ll be coordinating with your other providers of care. Appointments with a neurologist usually occur only one or two times per year, and often last about one hour; both their time and yours is very valuable! Time is limited, but with preparation you can get the most out of your appointment.
PREPARING FOR YOUR APPOINTMENT
Beginning at least two weeks before your appointment, monitor your symptoms. The goal of tracking is to use concrete data to help your neurologist plan your treatment. Your doctor will probably ask how well your meds work for which symptoms. Use symptom tracking to close the gap between your daily experience and the time between your appointments, during which your neurologist hasn’t seen you.
How to track your symptoms? Whichever way you find most accessible! You could use a journal or notebook, recording your observations on paper. You could use your phone or a tablet, including notes apps or symptom tracking apps. Taking video of your symptoms may be helpful, especially your motor symptoms. There are many worksheets available online, and these might help you track symptoms you didn’t know were influenced by your PD.
Track both motor (ex. Tremor, freezing of gait, rigidity) and non-motor (ex. Sleep disturbances, GI disturbances, depression) symptoms. Record as much information as you can!
- Between your appointments, always record if there were any recent significant changes to your symptoms.
- When and how often do your symptoms occur? How long do they last? Is the experience constant, or intermittent?
- Is there an association between your symptoms and when you take your medications, when your medications kick in, or when they wear off? Did a change of symptoms correlate with a change to your medication?
- How disruptive are symptoms to your daily life? What specific ways are you being affected? For example: do your symptoms interfere with your ability to eat, drive, do your daily chores, or sleep?
In the two weeks before your appointment, create or update your medication list. This keeps your neurologist informed so they can accurately add, remove, or adjust the dosage of your meds.
- On your medication list, include any prescription medicines, over the counter meds, and supplements you’re taking.
- Include information on what dose you take, when you take your medications (including if you take them with or without food), and any symptoms or side effects.
- Include a list of what meds you’ve tried in the past, and why that medication wasn’t working.
Determine your top three priorities for your appointment! Prioritize discussing which symptoms are interfering with your daily life most. Do your own research on your symptoms, using reliable sources. This will help you prepare to answer any questions your neurologist may have.
Ask a trusted person to join you! They can help manage logistics, such as driving and parking, and navigating the building and the office. It’s best to have someone with you who is familiar with your symptoms, so they can also assist in answering your neurologist’s questions, and provide the doctor with an additional perspective. This person can also be the designated note taker so you can engage fully with the doctor.
THE DAY BEFORE YOUR APPOINTMENT
Review the logistics, such as the office address and directions for parking. Know when you need to leave to get there on time, and plan to arrive early! Consider how your appointment time will affect the traffic between your home and the doctor’s office. Consider the distance you’ll need to walk to get into the building and to the neurologist’s office, and the fact that stress and changes to your routine may make your symptoms worse. Sydney recommends using the “Arrive by” feature on Google Maps to help plan your trip.
Gather items to bring with you. Don’t forget your symptom list/tracker, or your medication list. Sydney recommends bringing an extra dose of your medication, in case your appointment runs long or something delays you. It’s a good idea to bring water and a snack. Make sure your appointment buddy has a note taking tool, whether that’s their phone or a journal.
THE DAY OF YOUR APPOINTMENT
Stay focused. Appointment time is valuable, and this isn’t a good time for small talk or socializing. Make sure your priorities are discussed, and be honest about your symptoms. It may be tempting to downplay your symptoms, but the doctor can’t help you if they don’t know all the information.
Inform your doctor of any significant changes to your medical record, such as hospitalizations or surgeries.
Ask for clarification if you need it, especially about your treatment plan going forward. Ask what the best way to follow up is if you have questions between appointments. Your doctor may have an online portal, or they may use phone calls, etc. Make sure you have instructions for accessing that help. Write it down!
Ask for referrals to other healthcare providers.
- Occupational therapists: daily living tasks, home safety
- Physical therapy: balance and mobility
- Speech therapy: voice production and enunciation, swallowing concerns
- Counselor or therapist: emotional and mental health
- Nutritionist: diet
AFTER YOUR APPOINTMENT
Take some time to rest and recover. When you’re ready, review your notes from the appointment. Make sure you understand any changes to your treatment plan, especially any changes to your medication, then implement those recommended changes.
If you have an online portal through which to contact your doctor, set up an account soon after your appointment. This will prevent you from having to set it up while you have active questions or concerns. This is also a good time to schedule other healthcare appointments, especially if you have referrals or follow-ups.
BETWEEN YOUR APPOINTMENTS
Appointments with your neurologist may only be scheduled one or two times per year, which makes the time between appointments just as important as the lead-up to the appointments.
Resist the urge to adjust your treatments without your doctor’s input! Your neurologist must stay informed on your medication dosage and timing. Call or message your nurse practitioner if anything comes up, especially if your medication isn’t working, or if new symptoms are disrupting your daily life.
Continue to track your symptoms, especially those that disrupt daily life and tasks.
Engage in exercise and physical activity. This is one of the best ways to manage your symptoms.
Continue to connect with others, maintaining and building your support system of family and friends. Connect with resources and learn more! Reach out to your local APDA chapter, local support groups, exercises classes and/or educational events.
RESOURCES
APDA Healthcare Communication Graph
Davis Phinney Foundation’s My Symptoms Worksheet
Parkinson’s Foundation Symptoms Diary Worksheet
Editor’s Note: The Stanford PD webpage has these resources listed, as well as other resources not mentioned by the speaker: Preparing for Doctor Appointments
Questions and Answers
Question: How do I find a specialist who’s knowledgeable about PD?
Answer: If you have a local APDA chapter, they have a referral network to help. Get to know people living with PD and their care partners, and you may get referrals through word of mouth.
Question: Should I ask my primary care doctor for referrals, or my neurologist?
Answer: Either! They may each know different people, though your neurologist will probably be more informed about who in the area is best trained for treating PD.
Question: What should we do if we feel rushed during the appointment, or if we don’t get all our questions answered? What if we feel our concerns are being dismissed?
Answer: This can be very frustrating. Return to your priorities list, and keep it to only two or three main points during the appointment if you have to. Do your own research and advocate for yourself. If you’ve done all these things, and are still having trouble, it’s okay to seek a second opinion and ask another doctor. Talk to those with PD and/or a local support group.
Question: How do we get our providers to coordinate with each other?
Answer: If you have any important info from one doctor, bring it to other appointments. Preparation on your end is important! If you can, build a care team who are already connected via the same health care portal or system, so they can send messages easier.
Question: How do we know if an issue is a PD-related symptom, or something else? It’s hard to describe the symptoms, since it’s been a while since my last appointment.
Answer: Keep tracking your symptoms, and bring the record to your neurologist. When the symptom is happening, record how often it happens, and for how long. Talk to others with PD and see if they experience it too.
Question: What’s the difference between a neurologist vs primary care doctor vs movement disorders specialist?
Answer: Primary care doctors treat general issues, and have a broad base of training. Some primary care doctors treat more PD cases than others. Neurologists are trained for neurological conditions, including PD. Movement disorders specialists receive more specialized training than neurologists, and most often focus on PD and Huntington’s disease. They have the most training applicable to PD.
Question: Is there a particular symptom tracking app you recommend?
Answer: Many exist, including a tracker app by the APDA. Use whatever app works best for you; find one that you’re willing and able to use consistently. Try a few, for one or two weeks each. Ask your doctor if they know a symptom tracker that can be integrated with their online system.
Question: How do I talk about symptoms that are intermittent and don’t occur all the time?
Answer: Note a description of the symptom, what time of the day it occurs, when it occurs in relation to when you took your meds, how long it lasts, and how often it happens. Consider if that symptom is a priority; does it affect your daily life, or just something that you notice when it happens?
Question: How do I find a support group?
Answer: Your local APDA chapter can help connect you with a PD support group. A quick Google search will find groups that meet in your area, or in your time zone if the meetings are virtual. You can also ask your neurologist or another member of your care team.
Question: I’m my dad’s care partner, and he has multiple medical issues. It feels like my neurologist has given up; our most recent appointment was only 15 mins, and we didn’t get any support. What can I do?
Answer: Complex care is hard! Return to your priorities, and narrow it down to only one if you have to. If you’re consistently not being heard, ask for a referral to a different provider. Consider a referral to a therapist for you or for your loved one with PD; more time to talk is generally given during therapy or counseling, as opposed to a specialist check-in appointment. Supplement your care by adding others to your care team, like a physical therapist, etc. If your loved one’s PD is advanced, take that into account when considering what you can do. Continue to ask questions of others on the care team, including following up with a nurse practitioner.