Questions to Ask at Your Parkinson’s Neurology Appointment

A neurology appointment is one of the best chances you have to shape your Parkinson’s care. When you come in with written questions, you and your neurologist can spend that time on what matters most to you.

Visits can be short. Many people see their physician for only 15 to 30 minutes a few times a year, and it’s easy to forget a symptom or a question once you’re in the exam room.

You don’t need to ask every question below. Choose the ones that fit your situation, and add your own. Here’s how to prepare, what to ask, and what to do once the visit ends.

Before Your Appointment

Start with a written list, and put your top three concerns first so the most important topics come up early.

Then consider these steps:

• Keep a log: For a week or two, note when you take each dose and when symptoms ease or return, so you can spot OFF time patterns. A short phone video can also show a symptom that comes and goes.
• Update your medication list: Include every prescription, over-the-counter medicine, vitamin, and supplement, with the dose. Some people bring the bottles themselves.
• Bring a care partner: A family member or friend can take notes and share what they’ve noticed.
• Ask for an interpreter if you need one: If English isn’t your first language, call the office ahead of time to request one.
• Prepare for telehealth: For a video visit, check your internet connection and charge your device beforehand.

Which Questions Should You Ask Your Neurologist?

Read these aloud or hand the list to your doctor.

Diagnosis and Progression

Whether you’re newly diagnosed or years into PD, these questions can help you understand where things stand:

• How did you reach my diagnosis, and do I need any tests?
• How has my Parkinson’s changed since my last visit?
• Which symptoms should I watch most closely?
• How do my other health conditions affect my Parkinson’s?

Medications and Timing

Your log can help your neurologist see patterns such as OFF time. Questions to consider:

• What does each of my medications do?
• When should I take each dose, and should I take it with food or without?
• My symptoms come back before my next dose. Is this OFF time, and what can we do about it?
• Which side effects should I watch for, and which should I report right away?
• I have movements I can’t control. Could this be dyskinesia, a type of involuntary movement?
• Do any of my other medicines or supplements affect my Parkinson’s medication?

Please do not change the timing or dose of a medication on your own. Talk with your neurologist first.

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Parkinson’s can affect much more than movement. Non-motor symptoms can include changes in sleep, mood, digestion, and thinking, and some people don’t mention them because they don’t know these changes can be part of Parkinson’s. Questions to consider:

• I have trouble falling asleep or staying asleep. Could this be related to Parkinson’s?
• My partner says I move or shout in my sleep. Should we look into this?
• I feel anxious, low, or less interested in things I used to enjoy. Can we talk about that?
• I’ve noticed changes in my memory or thinking. What could be causing this?
• I’m often constipated. How can I manage it, and could it affect my medication?
• Sometimes I see things that aren’t there, or I sense someone nearby when no one is. Should I tell you about this?

Some of these can feel hard to bring up. The Parkinson’s Foundation advises people to report hallucinations or delusions to their medical team, even if they are not bothersome.

Exercise and Therapy

Regular exercise is one of the best tools people with Parkinson’s have, so it belongs on your list. A physical therapist can help with walking and balance. Questions to consider:

• What kind of exercise is safe and helpful for me, and how often?
• Should I see a physical therapist for walking, balance, or falls?
• Would an occupational therapist help with daily tasks such as dressing or cooking?
• My voice is softer, or swallowing feels different. Should I see a speech therapist?
• Can you send the referrals today?

Your Care Team

A movement disorder specialist is a neurologist with extra training in Parkinson’s and similar conditions. Questions to consider:

• Would a movement disorder specialist be helpful for me?
• Should I see other specialists, such as a sleep doctor, a mental health professional, or a dietitian?
• Who coordinates my care between you and my primary care doctor?

Advanced Treatments and Clinical Trials

As Parkinson’s changes, some people may become candidates for advanced treatments, such as deep brain stimulation. Questions to consider:

• Could advanced treatment options be right for me, now or in the future?
• How will we know when it’s time to talk about them?
• Are there clinical trials that might fit me?

The Yori app can help you search for recruiting studies by location and health history.

Questions for Care Partners

Care partners often notice changes that the person with Parkinson’s may not. Questions care partners may ask:

• Is there a good time during the visit for me to share what I’ve noticed?
• What changes should I watch for at home?
• What should I do if there is a fall, sudden confusion, or another sudden change?
• How can I help with medications while respecting my loved one’s independence?
• What support is available for me as a care partner?

During and After Your Visit

A few habits can help you remember what was said and act on it:

• Take notes: Write down the main points, or ask your care partner to. If you’d like to record the conversation, ask your doctor first.
• Repeat back the plan: Say it in your own words. For example: “So I’ll take my afternoon dose at 2 p.m. instead of 3 p.m. Is that right?”
• Ask who to call between visits: Find out the best number and what counts as urgent.
• Book your follow-up: Schedule your next visit before you leave, if you can.
• Check the patient portal: If your clinic has one, you may find visit notes and test results there.

You Don’t Have to Prepare Alone

Bring this list to your next visit, and add your own questions as they come up. PCLA’s Referral Specialist can help you find exercise classes, therapy, and care partner support, and our free support groups connect you with people who understand. We’d be happy to help you live your absolute best life with Parkinson’s.

This article is for general education only. It does not provide medical advice or replace care from a qualified health professional.