How to Get the Most From a Doctor Visit When You Have Parkinson’s Disease

Bringing your notes and a companion can make a difference

Sonya Collins

Reviewed by

Orly Avitzur, M.D.

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Published October 30, 2025

A hand with a pen writing down a list of symptoms on an index card with brain scan images underneath the card

AARP (Getty Images,5)

Ethan Henderson has a lot of experience with doctor visits for Parkinson’s disease — maybe twice as much as many other people who live with the condition. He spent his younger adult years accompanying his father, who was diagnosed in 2001, at age 65. And now, having lived with Parkinson’s for 10 years himself, he handles his own medical consults.

“As a caretaker for my father, I was able to learn from his appointments what I would take into my appointments,” says Henderson, 56, who is senior manager of philanthropy and a patient council member at the Michael J. Fox Foundation. “It was a huge gift he gave me.”

Parkinson’s disease is a neurological condition that affects movement. While there’s not yet a cure for this condition, you may control the symptoms and potentially slow their progress through medications, lifestyle changes and in some cases, deep brain stimulation.

A neurologist will treat and manage your Parkinson’s disease. Neurologists who specialize in Parkinson’s disease are called movement disorder specialists — though you might just call them your Parkinson’s doctor. Movement disorder specialists get one to two extra years of training, beyond their general neurology training, in movement disorders, including Parkinson’s disease. Some general neurologists also treat Parkinson’s disease, but people with Parkinson’s would represent a small proportion of their patients. You’ll continue to see your other doctors, such as your primary care provider or a cardiologist, for other health concerns.

Medical management of Parkinson’s disease symptoms requires regular visits with your Parkinson’s doctor. Here’s what you can expect and how to get the most out of each visit.

Your first appointment with a neurologist or movement disorder specialist after you’re diagnosed with Parkinson’s will help your doctor get to know you and understand your goals of care. Those goals may be based on what symptoms are bothering you the most or — if symptoms are interfering with daily life — what activities you may be most eager to get back to.

“It’s all about how Parkinson’s is affecting that person, their goals and values, and what they’re looking for in treatment,” says Dr. Sneha Mantri, chief medical officer of the Parkinson’s Foundation. “Then we will start recommending treatments to address specific symptoms.” Mantri is also a neurologist and movement disorder specialist at Duke Health in Durham, North Carolina.

Be prepared to tell your doctor in that first visit what your most troubling symptoms are. Parkinson’s disease can involve many different issues, some related to movement, some not. Everybody’s symptoms are different, and some are more bothersome than others. Your doctor can focus treatment recommendations on the symptoms that are bothering you most first. That might be classic movement-related symptoms like tremor in your hands or feet or slowness and stiffness while walking. Or it could be less visible, but equally troubling problems, like constipation, insomnia or depression.

After that first visit, you might have a follow-up appointment in a month or two to see how well your medication is working. When you are stable, you may meet with your doctor every three to six months, depending on your needs and how your doctor runs their clinic.

How will your doctor monitor the disease?

At follow-up visits, your neurologist will want to monitor how well your medications are working and how your disease is progressing. Here’s how they’ll do it.

Questions about your symptoms

Don’t be alarmed when your doctor asks about symptoms that you may or may not have, warns Dr. Kelly Mills, a movement disorder specialist at Johns Hopkins Medicine.

There are many different possible symptoms of Parkinson’s disease, and nobody gets all of them. But your doctor may run through a list of symptoms, asking you if you’ve experienced each one, Mills explains.

Symptoms on the list may include movement problems like stiffness or resting tremor; problems with body functions, such as constipation, bladder trouble and erectile dysfunction; and mood or thinking changes, like memory loss, hallucinations or depression.

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“Sometimes people with Parkinson’s hear these questions and think, ‘Oh my gosh, that means I’m going to get that,’ and it can be very scary,” Mills says. “But it’s really not the case that everyone is going to get all of these things.”

Your doctor will also want to know how your symptoms are affecting your quality of life.

“A big question we often ask people is ‘How are you doing now compared to six months ago?’ ” Mantri says.

If you’re doing worse, the doctor may be able to adjust your treatment plan to help you do better.

Review of your self-management plan

The doctor might also go over what you are doing on your own to keep your symptoms at bay.

Mills says to expect a discussion around proactive plans for exercise. “Because we know that this modifies the progression of Parkinson’s disease, so it’s something we’re going to stress in the clinic.”

Neurological test

During the visit, the neurologist will perform an exam called the Unified Parkinson’s Disease Rating Scale. The doctor will watch you perform various movements, such as tapping your fingers and walking down the hall, and may have you fill out a questionnaire that asks about lack of smell, incontinence, constipation, REM-sleep disorder and other symptoms. You may be asked to complete a cognitive scale and depression inventory once a year.

“We’re looking to see how the Parkinson’s is changing between this visit and the last,” Mantri says. “It gives us all the information we need about how Parkinson’s is affecting your neurological system.”

Tips from a patient

Henderson, who sees his movement disorder specialist every six months, has been to many appointments like the ones described by Mantri and Mills. He suggests that patients prepare for appointments in advance to make the most of their time with the doctor.

Keep track of changes between visits

Keep track of new or worsening symptoms or changes in your response to medications between visits. Henderson keeps a running list in a notebook that sits on his desk.

“I’ll handwrite a note to myself, saying ‘I fell on this day,’ or ‘I was having trouble swallowing,’ or ‘This was a magnificent day. I ran 10 miles,’” he explains.

Prepare before the visit

A day or two before his appointment, Henderson goes over the list in his notebook and condenses the most important parts onto a 3x5 index card, just like his father used to do. His wife might weigh in as well, reminding him to tell the doctor about a new symptom or a new medication he started. Some people use electronic diaries and mobile apps for tracking Parkinson’s symptoms.

Henderson prioritizes the three most important things he wants to tell the doctor, in case there’s not time to cover everything.

He also compiles an updated list of all his medications — even those not for Parkinson’s — for his doctor. People taking supplements should include those on the list as well, as some can interact with Parkinson’s medicines. Mantri likes her patients to include lots of details in their med lists.

“Bring a list or table that shows us, for the Parkinson’s meds, what time of day you’re taking them and whether it’s with or without food,” she says, “because that can help us in determining whether we need to make changes.”

Let the doctor know you have questions

When the visit starts, Henderson recommends you let the doctor know right away that you’ve got some questions or concerns you’d like to discuss during the appointment.

“Then the doctor can reserve time to answer the questions,” Henderson says. Of course, after 10 years with his neurologist, Henderson no longer needs to tell her he has things he wants to discuss. “I just pull out my index card and she always laughs and says, ‘Well, there’s your card.’”

Be open and honest

Be completely honest about your symptoms during your appointment.

“In the beginning, I would minimize my symptoms, minimize the trouble I was having,” Henderson recalls. “Don’t do that. Because they can address it.”

In fact, Henderson suggests you err on the side of sharing more about your symptoms than less. Even if he’s not sure whether it’s a symptom of Parkinson’s or something else, he shares any changes in his health with his Parkinson’s specialist.

Bring backup

Whenever possible, bring a loved one to your appointments. They can help take notes, remind you later what the doctor said, and remind you of anything you wanted to discuss during the appointment.

“Having a second set of ears and eyes can be so helpful in these appointments, whether it’s a friend, a spouse or an adult child,” Mantri says. “That way the person with Parkinson’s can give their full attention to the visit itself.”

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Sonya Collins is a contributing writer and award-winning health and medical journalist. Her work has appeared in Fortune and Scientific American and on WebMD.com.

Orly Avitzur, M.D., a former president of the American Academy of Neurology, is a practicing neurologist in Tarrytown, New York, and is working on a medical memoir, A Very Good Brain. She is the former medical director at Consumer Reports and a past editor in chief of Brain & Life magazine.