I am responsible for preparing for first visit with my movement disorder specialist to help achieve successful results. According to the Davis Phinney Foundation, Every Victory Counts manual, “being prepared for your medical visit is by far one of the most important and least performed self-care tasks.”
The best advocate for my unique Parkinson’s care is me. I want to be active and engaged in the whole process, but it will be impossible to ask every question in one appointment. I respect my doctor’s limited time to share his background and to offer medical advice. However, I want the appointment to go smoothly, to get the most benefit possible, and to foster an ongoing relationship. Preparation is the key to having a successful appointment during our time together.
Preparing for First Visit Plan
- Get address, driving directions, and tips on finding the office.
- Make arrangements for hotel, car rental, flight, driver, baby sitter, or pet sitter.
- Research doctor’s bio. Look for common ground for conversation.
- Read books, blogs, or journal articles written by doctor.
- View videos and podcasts featuring the doctor.
- Read articles and reviews about the doctor written by others.
- Print and complete forms at home or submit online when possible.
- Collect requested medical records, test results, and pertinent imaging.
- Set up medical portal when directed.
- Prepare a list or talking points of your top 3-5 concerns or questions. Write out the entire thought rather than a key word or two. Understand you may not have time to ask all the questions, so prioritize.
- Keep diary regarding any major issue.
- Prepare a list of your motor symptoms and non-motor symptoms.
- Prepare a list of your medicine and dose information.
- Get instructions on what medicine to stop taking before appointment.
- Ask someone to accompany you and assign note-taking. Encourage partner to ask a question.
My Appointment Preparation—What I Did
When I made the appointment, the first available spot was five months out. I was not surprised as Michael Okun, M.D. is an internationally known Parkinson’s expert. I grabbed the appointment in gratitude and also scheduled hotel and pet sitter. I selected Dr. Okun because I simply wanted the best movement disorder specialist on my care team board of advisers.
I also wanted to learn more about this leading researcher who has written 400+ peer-reviewed articles and is referred to as “the voice of the Parkinson’s disease patient.” I found common ground (literally!) as he grew up in North Palm Beach where I live. He wrote a poetry book, Lessons from the Bedside, when he was in medical school (which I found and read). I also read Parkinson’s Treatment…10 Secrets to a Happier Life and 10 Breakthrough Strategies in Parkinson’s Disease. I read his blogs and watched several interviews and podcasts.
I completed three pages of forms relating to medical history and medications. I set up my medical portal after receiving instructions two weeks before my appointment. Messages to complete and submit additional questionnaires online were sent to me five days before the appointment. These included:
- PDQ-39 Quality of Life Questionnaire
- BDI-II Beck Depression Inventory
- Beck Anxiety Inventory Survey
- Cognitive Function Questionnaire (CFQ)
- Falls Efficacy Scale
- SWAL-QOL Symptom Profile
- Questionnaire for Impulsive-Compulsive Disorders in Parkinson’s Disease – Rating Scale (QUIP-R)
My key concerns were identified and written out. One major non-motor symptom related to sleep. Rather than saying I don’t sleep well or I wake up several times a night, I kept a sleep diary to take with me. I have too many meds to remember accurately, so the list will be helpful. I planned to stop carbidopa/levodopa and Azilect at midnight before my 11 a.m. appointment as directed. Joe will accompany me.
I am prepared for the road trip and prepared to meet Dr. Okun. and his staff.
Question: How do you prepare for your neurologist’s or movement disorder specialist’s appointment? Thank you for sharing your comments.
© Can Stock Photo/Alex Millos