How to prepare for a neurology appointment
Our job as patients is to ask questions and advocate for our needs
I have a neurologist appointment coming up soon, which has me thinking about how lucky I am to be able to say that.
I’m fortunate to have a great neurologist who treats me for Parkinson’s disease. I’m also fortunate that she is just one part of a medical team that includes my primary care doctor and specialists ranging from orthopedists and optometrists to gynecologists and urologists. Sadly, a recent study found that nearly half of Parkinson’s patients don’t see a neurologist for treatment. And many of those people don’t see a movement disorder specialist, which is a neurologist with specific training on Parkinson’s and other movement-impacting diseases.
There are many reasons for this. Some people live in areas with so-called neurology deserts, where there aren’t enough neurologists to meet the population’s needs. Taking an entire day or even multiple days to attend a neurology appointment often isn’t feasible for people in this situation. A trip like this means traveling with a caregiver, which can result in time off work, strained finances, and infrequent visits.
Others don’t realize what a neurology specialist can do for them, such as applying the latest in medical and surgical treatments to make life with Parkinson’s disease a lot more manageable. Some simply can’t afford treatment or lack the help to get to appointments.
I am blessed to live in the Northeastern United States and to have access to world-class neurologists and neurology specialists within 30 miles of my home. I don’t know what I would’ve done without these resources. I see my neurologist three to four times a year for checkups and tweaks to my deep brain stimulation device settings.
I’m also blessed with a job and a husband who have flexibility in scheduling time off when I need to make an appointment, and a neurologist who welcomes both our questions and input in making decisions about my treatment. Since day one of my diagnosis, my husband has been part of the team helping me navigate this awful disease.
No answers without questions
To make the most of these blessings and prepare for my upcoming visit with my doctor, I start making a list. This list contains questions that have come up or new symptoms I’ve noticed. I always have a note running on my phone to write things down as they arise between appointments. Even things I don’t think are related to my Parkinson’s disease go on the list, because as I’ve noted before, the brain is in charge of everything. So many other issues in the body and mind can be attributed to Parkinson’s and can be treated.
I also ask my husband for his questions and anything he has noticed. I tend to be overly optimistic (go figure) when making note of my symptoms and don’t always bring up issues like increased “off times.” I also can’t see my face or my gait — things he sees every day — to notice any changes there. As a team, we go into appointments armed with information and questions. My doctor never makes us feel rushed, but I find putting some thought into what we want to cover in an appointment really helps us exit the meeting with all our bases covered.
No matter who treats your Parkinson’s disease, preparing for an appointment can be a critical step in getting the most out of your time. Remember, your doctor sees you a couple of hours a year, and the rest of the time you’re on your own. Be sure to leave the office with answers, and possibly even a referral to other specialists who may be able to help you feel better. Your role as a patient or caregiver is to ask questions and advocate for your needs. It’s the doctor’s job to offer you potential solutions. So don’t forget your list!
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
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Maggie Koeppler
In preparing to see your neurologist I always wonder “ do I take my medication prior to visit or not?” Should the Dr see what I am like unmedicated?!
Doug MaGee
My neurologist of 8 years, retired last year. I asked to be seen by the only movement disorders specialist, neurologist, in my area. However, he is also a European trained Psychologist. My first visit, he kept me waiting in the exam room for nearly thirty minutes. Then when he came in, he asked me if I had any problems. I was nervous and anxious about starting anew with a new neurologist!! I told him that I was having some difficulty with walking!! He frowned and said, ‘ Where is your cane, if you are having a problem? “ I said that I only use it, if I have to, that I’m not dependent in using a cane, all the time. Today, I don’t need it so much. He then asked me to get up from my chair, without using my hands. I tried three times, and couldn’t do it, because the seat was low in the chair. He frowned again. He then asked me what career did I have, when I was working. I told him I had three careers, and he ruminated about them for about 15 minutes. He then did the hand slapping on thigh neurology test, and eye test ( for nystagmus), and then closed his tablet, and said times up, so he escorted me to the door, and gave me a little push on my back toward the checkout window! So I said that I needed refills on meds ( Sinemet ). He said ok!!That was my appointment! I had a prepared list, of what to ask him, but I didn’t get a chance to discuss any other questions or problems with him! With my former, retiring neurologist, each time, we discussed questions, and problems, and he gave me good, practical answers, that helped me! So, this neurologist did not ever call in my prescription refills!! I’m a loss, as to what to do now!! I’m wondering if I should look around for another neurologist! ☹️D