How to prepare for your appointment with your Parkinson's doc?
Who is Katie Moore, MD MSc?
Dr. Katie Moore is a senior movement disorders fellow at the University of Florida’s Norman Fixel Institute for Neurological Diseases. She completed her MD and neurology residency training at the University of North Carolina in Chapel Hill and her Master of Science degree from Eastern Virginia Medical School. She also obtained her Bachelor of Science degree in biology/neuroscience from Duke University. She will be joining the faculty at Duke University this summer. Her research interests include improved access to care for persons with Parkinson’s disease. You can find her on Twitter @KatiePMooreMD. We sat down and asked Katie about her advice to PWP who are preparing to see their doctor.
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A neurologist is a key part of your Parkinson’s disease team. A neurologist is a doctor with training in the care of conditions of the brain, spinal cord, nerves, and muscles. A movement disorders specialist is a neurologist, who has additional training or interest in movement disorders such as Parkinson’s disease (PD). Research has shown that having a neurologist or movement disorders specialist on your PD team can improve symptom management and reduce hospitalizations related to your PD.(1,2 )PD is a complex disease that can affect many parts of your body. Seeing a neurologist or movement disorder specialist for your PD can be very helpful.
So, you have your appointment scheduled with a PD doctor. What should you do to prepare? Here are a few things that I recommend considering and/or preparing to make the most out of your visit.
1. Your Goals
There is so much to talk about in your meeting with the PD doctor. In your first appointment, they will want to get to know you and find out more about your symptoms. It can be very helpful to let your PD doctor know your goals for the appointment when you first meet them. Before your meeting, think about what you want your PD doctor to focus on during the visit. Examples of common goals for an appointment include (1) making sure you have the right diagnosis for your symptoms, (2) understanding more about how PD may affect you and your family, (3) addressing specific bothersome symptoms, (4) addressing medication side effects, (5) planning for the future with PD, and (6) considering advanced therapies such as deep brain stimulation surgery. Before each appointment, pick one or two specific goals you want to address with your PD doctor. This helps focus the appointment on what is most important to you. Remember that your quality of life is important to your doctor. It is important for the doctor to know if there are certain activities that bring you joy or are meaningful to you like playing with your grandchild or playing golf with your wife.
2. Pictures of your Brain
We have all heard it before, “A picture is worth a thousand words.” Have you had a picture taken of your brain or spinal cord? If so, you and the doctor, who ordered that picture, will have a written report of the results. There are many types of pictures of the brain including CT scan, MRI scan, and DaT scan; each of these can give us different types of information. While a brain scan is usually not required to make a diagnosis of PD, your PD doctor will want to look at any pictures of your brain that you may have had. Just like the saying, there is so much in that picture that cannot be in the report – a thousand words worth! The doctor, who referred you to the PD doctor, may have sent the reports of your brain scans, but the pictures themselves are not sent with referrals. For every scan you have, I recommend getting a CD of the pictures. The radiology center or hospital, where you had the scan, can do this for you. Before your appointment with the PD doctor, collect the CDs of your brain scans to bring with you to the appointment. Your PD doctor can quickly look at your prior scans and know so much about your brain!
3. Care Partner
Many people with PD have a care partner as another key member of their PD team. This may be a spouse or significant other, adult child, friend, or paid caregiver. As with any team, communication is key. I recommend bringing your care partner with you to your appointment with the PD doctor. Your PD doctor may have questions for your care partner about symptoms in your sleep or symptoms you may not notice. Your care partner may also have questions for your PD doctor. Talk with your care partner before the visit to help develop your goals for the meeting. As members of your PD team, both your care partner and PD doctor want to help you live your best life. Bringing them together at your appointments helps your team work better.
Of course, you may want to discuss specific points privately with your PD doctor. In this case, asking your care partner to wait in the hall or waiting room for a few minutes at the beginning or end of the appointment can be helpful. You can also speak to your PD doctor on the phone at a different time. With COVID, there may be some restrictions on the number of people that can come to the office with you. It is helpful to clarify this before the appointment.
4. Medications
Medications can be confusing. What prescription medications do you take? How much? How often? What time of day? How about over-the-counter medications and supplements? The answers to all these questions can be critically important to the appointment, but they can be difficult to remember. Bringing all your medications with you can answer many of these questions. However, the instructions for taking your medications have changed since you filled the medication at the pharmacy. For example, your doctor may have increased the amount of medication that you take with each dose or they may have changed when you take your medication. For this reason, I also recommend bringing an up-to-date list of your medications with the amount you take and when you are taking them. Preparing this can be a daunting task. Since it is so important, be sure to give yourself and your care partner the time you need to get this essential information prepared before your appointment. It can make all the difference!
5. Questions
Phew! With these first 4 steps, you have already done a lot to prepare for your appointment with the PD doctor. But how many of us have left the doctor’s office, only to realize we have a million questions! People are often shy about having a list of questions for their doctor, but I strongly encourage it. There is so much to discuss during your meeting. While your goal for the meeting is the one (or maybe two) big things you want to accomplish during the meeting, you may have a whole bunch of other questions. As you think of them, write them down on a piece of paper to bring with you. Like preparing your goals for the visit, having questions prepared helps focus the appointment on what is important to you and your care partner. Talk with your care partner before the visit to help write down any questions you both have. Often, your PD doctor will also have resources to share that will help answer your questions as well. These may include this website and many others.
Bonus Tip: Hearing Aids! You have taken the time to schedule your appointment with your PD doctor and do all the preparation for the meeting. Do not forget your hearing aids! Be sure the batteries are working and that they are in your ears before the appointment starts. Especially during this time of wearing masks, you want to be sure you can hear and understand what your PD doctor is saying. Communication with your PD team is key, and hearing aids can play a big part.
Reference:
1. Willis AW, Schootman M, Kung RTN, Evanoff BA, Perlmutter JS, Racette BA. Neurologist-associated reduction in PD-related hospitalizations and health care expenditures. Neurology. 2012;79(17):1774-1780. doi:10.1212/WNL.0b013e3182703f92
2. Cheng EM, Swarztrauber K, Siderowf AD, et al. Association of specialist involvement and quality of care for Parkinson’s disease
To read more books and articles by Michael S. Okun MD check on Twitter @MichaelOkun and these websites with blogs and information on his books and http://parkinsonsecrets.com/ #Livingwith Parkinson’s #EndingPD #Parkinsonsecrets #LessonsFromTheBedside
He also serves as the Medical Advisor for the Parkinson’s Foundation.
To see more on Dr. Indu Subramanian she does live interviews of experts in Parkinson’s for the PMD Alliance.
