Traveling to Movement Disorder Specialist
I was excited to be on a Sunday road trip on December 2, 2018, to Gainesville, Florida to meet Dr. Michael Okun, world-renowned movement disorder specialist. In 2002, Dr. Okun and Dr. Kelly Foote formed the University of Florida Health Center for Movement Disorders & Neurorestoration to bring together experts in movement disorders from diverse disciplines from all over the UF Campus. Today the Fixel Center for Neurological Diseases, the Movement Disorders and Neurorestoration Program is an international destination for patient care, research, and teaching. Consolidated in one centralized location on the 4th floor of the Orthopedic and Sports Medicine Institute, the staff coordinates a myriad of advanced medical and surgical services to deliver motor, cognitive and behavioral diagnosis and treatments.
I am fortunate to live five hours from Gainesville. A Hilton hotel is conveniently located across the street from Fixel Center. My appointment was at 11 a.m. on Monday, December 3. I was instructed not to take my carbidopa/levodopa or Azilect after midnight on the day of appointment. Although I am rarely in public without being dosed, I walked to the restaurant with some support from Joe. After breakfast, we moved the car across the street and headed to the 4th floor of the building by 10:30 a.m.
The Appointment Begins
The first stop was an intake area, and the receptionist confirmed basic information. She handed me a stack of forms to complete, but I had already completed on-line, so I returned them and was sent to the waiting room. Although almost full with two dozen people, we found two seats. Fifteen minutes later I was called into a room where vital signs as well as height and weight were recorded. I returned to the waiting room and a few minutes after 11:00, we were escorted to a doctor’s exam room. A staff member entered my current medications and pharmacy information.
Shannon Y. Chiu, M.D., Movement Disorders Fellow
Next Dr. Chiu came in and introduced herself as a Movement Disorders Fellow and took my medical history. Although my medical records had been faxed before ever making the appointment in July, they were incomplete. She first asked for a timeline of my symptoms. I had a copy of one of my blog posts—A 3-Year Timeline of Symptoms. I verbally described eight symptoms that had occurred leading up to a diagnosis.
Dr. Chiu was friendly, easy to talk to, and professional. Dr. Okun opened the door a couple of times joking with us, and said he was reading all about me. She had me do several neurological tests such as following her moving finger with my eyes without moving my head. She checked my balance and recovery as she stood behind me and pulled me toward her. We went out to a long corridor and she watched me walk and asked me to repeat the months backwards as I walked. We returned to exam room and she asked me to remove my shoes if easy to do so, and she checked my toes and reflexes. I took my PD medicine.
Michael S. Okun, M.D., Professor & Chair of Neurology, University of Florida; Co-Director & Administrative Director, Fixel Center for Neurological Diseases at UF
Dr. Okun entered the room and greeted Joe and me. We discovered he used to live in North Palm Beach where I have lived since 1980. “We operate like a cabinet, here to offer advice, and it is your decision to follow it or not,” he said. My mission was to be optimally medicated to have the best quality life and to see what else I should do. He wanted to hear my story again. So in a narrative format, Dr. Chiu described my full history of symptoms in the background as he talked to me and performed some of the same tests such as eye movements and reflexes on my legs. He confirmed Parkinson’s. But in the next breath, I was reminded it could be worse. I saw some of “the worse than me” in the waiting room, and I knew he was right. Dr. Okun shared his philosophy that a Parkinson’s patient can have happy and meaningful life.
We talked about exercise, and Dr. Okun inquired what I did. Yoga and Tai Chi are two of my favorites. He emphasized the importance of exercise. He also watched me walk up and down the hallway and pulled me backwards. My meds had not reached my brain yet, so I was still walking awkward and was off-balance. I showed Dr. Okun my sleep diary and the effect of taking carbidopa/levodopa during sleeping hours versus not taking the medication. He explained that when I wake up and cannot sleep, I am depleted of dopamine and that is why I do not get back to sleep. So he agreed that I could take the same daytime dosage of c/l if I am sleepless at night.
Higher Dose Recommended
I have been taking carbidopa/levodopa four times a day at 8 a.m. 1 ½ tabs, noon 1 tab, 4 p.m. 1 ½ tabs and 8 p.m. 1 tab. I will slowly phase into taking 1 ½ tabs each of those times and another dose if needed in middle of night. I also have the latitude to increase to 2 tabs each time if needed with hope of getting a full 4 hours between dosages without off episodes.
Physical, Occupational, Speech, and Swallow Evaluations
Dr. Okun recommended assessments for physical therapy, occupational therapy, and speech therapy as well as a swallow test. The results will be an important baseline going forward as well as identify any problems in an early stage that I can more easily address. These appointments can all be scheduled in one day at the Fixel Center. Then I can take the results back to professionals in Palm Beach County and work on any issues recommended. So I will return to Gainesville in April for these assessments. I will meet with Dr. Okun once a year. However, he and his staff are available to answer questions through messaging.
Do You Have Questions?
Dr. Okun asked me if I had any questions. When he was in medical school, he wrote poetry and the book, Lessons from the Bedside, was later published in 1995. In the Aphorisms chapter, “the body heals itself” caught my attention. I asked him how he viewed this sentiment from the Parkinson’s perspective. He believes Eastern medicine has a significant role. He emphasized the importance of eliminating stress. I have had several experiences where stress has exacerbated Parkinson’s and joked that a hang nail throws me off! I asked him to sign the poetry book which he kindly did. His personalized inscription to me will forever be a motivation to keep on blogging.
He also asked Joe if he had questions. Joe’s concern related to driving and how long I could drive. Dr. Okun hears that question frequently from family members and sometimes has to have a professional evaluate the driver in a road test. Dr. Okun’s position is for me to continue to drive and go places for as long as I can. Joe mentioned that I scare easily or perceive a car is closer than it really is. That is true since I move slower, I view others moving faster whether they are or not.
A Prayer and a Plan
As the consultation drew to an end, I said a silent prayer in gratitude for Dr. Okun’s genuine, caring, and unhurried approach. I knew I was one blessed gal with Parkinson’s to have Dr. Okun and his movement disorder Fellows on my care team. After he left, Dr. Chiu placed the pharmacy prescription and provided a handout on today’s recommendations plus information on constipation. I learned I could be involved in Parkinson’s research in the future even though I do not live in the area. We ended where we started at the intake desk. We made my appointments for 2019 and left the building at 1:30.