Why should you see a specialist?
Movement disorder specialists and neurologists are healthcare professionals that focus on the basic science and research in addition to caring for patients with Parkinson's. Many of these medical professionals are located at academic universities and have the best understanding of available clinical trials. They are also more likely to be helpful with the day-to-day challenges from Parkinson's, can present the latest treatment options, and more commonly work with other Parkinson's patients. Movement disorder specialists have more experience diagnosing PD and generally care for larger populations of people with PD, giving them the expertise and familiarity of available medications and up-to-date treatments.
What is the difference between a General Neurologist and a Movement Disorder Specialist?
Some neurologists will treat people with PD and are knowledgeable in the disease, but due to diverse practices needing to cover all neurodegenerative conditions, their Parkinson's patient load is generally smaller. A Movement Disorder Specialist is a neurologist who has completed an additional two-year fellowship in movement disorders allowing them to be more familiar with a range of PD symptoms and treatment options. Movement Disorder Specialists are also aware of surgical treatments and complimentary therapies, as well as open and available clinical trials. Experts have found that a Parkinson's diagnosis by a movement disorders specialist is correct 98.6% of the time.
Choosing a Specialist
Depending on insurance requirements, you may need to ask your primary care provider for a referral. It is important to do your research in advance as well. Click on the link below for a listing of Movement Disorder Specialists and General Neurologists in Alabama.
At PAA, we strongly recommend seeing a Movement Disorder Specialist. A general neurologist is the next best thing to a movement disorder specialist should it take too long to get an appointment, or travel to the location is difficult.
If you can't find a specialist in your area and you do not live near an academic medical center, such as the University of Alabama at Birmingham (UAB,) Huntsville Hospital, or University of South Alabama (USA), you may want to seek a referral for a general neurologist, internist, or gerontologist. However, the Parkinson's Association of Alabama strongly suggests finding a Movement Disorder Specialist to see at minimum once a year for check-ups, even if your local general neurologist or primary care physician manages your overall well-being once or if diagnosed with PD.
Decision about treatment and referrals to the above specialists should be collaborative between you and your primary care physician. If you are seeing multiple specialists, it is very important for you to be your own advocate and to present all data representing your case to keep all physicians on your team in the know of what other physicians may be doing.
Preparing for First Visit
Preparing for a first appointment with a neurologist or movement disorder specialist can feel daunting. It is important to be honest, clear, and upfront about the symptoms you are experiencing so that an official diagnosis can be made. It is also important to have an advocate - whether a family member or a friend to attend the appointment with you. Taking a journal and making notes during appointments can be helpful for processing information after an appointment as well.
The first time you see a Movement Disorder Specialist or General Neurologist, you can expect a conversation about you and your family's medical history. They will also conduct a thorough neurological and physical exam. From there, your specialist may choose to run more diagnostic tests and host discussions about current symptom management and treatment options. Some questions you may want to ask your doctor at your first visit, include:
1. What test(s) or tools will you use to determine my diagnosis?
2. When can I expect to receive a Parkinson's diagnosis?
If you do receive a Parkinson's Diagnosis, below are some common key questions that you can ask at your visit that can help you to get the pertinent information you need that were developed by the Parkinson's Foundation.
How quickly does Parkinson's Disease usually progress and what will change over time?
How do my other health conditions and medications affect my PD?
Are you aware of any new research and treatment options I should consult?
Are there lifestyle changes that can help with PD?
How is Parkinson's treated? Are there ways I can slow the progression of my Parkinson's?
Besides taking medications, what else can I do to manage my Parkinson's disease?
Are there specific therapies, exercises, or lifestyle changes that can help?
Are there any clinical trials I could participate in?
Am I a candidate for potential surgical options such as Deep Brain Stimulation (DBS,) Lesion Therapy, or Focused Ultrasound?
How and when should I take my medication? Should I take the medicine before, with, or between meals?
What are the potential side effects of medications? Is there anything I can do to avoid or manage the side effects that I might experience?
What symptoms or side effects should I report immediately?
How often should I make appointments, and should I expect to see you or another staff member at each visit?
What other specialists or healthcare professionals should help me manage my care?
If you are not available between visits, who may I communicate with and how?
Should I get a second opinion?
Most people with PD are advised to see their doctor every six months, especially if they are taking anti-Parkinson medications. If a person is experiencing problems with his or her condition or treatment, more frequent visits may be warranted. Some people remain in regular contact with their doctors by telephone, email, or an online patient portal. For people who urgently need to speak with their physician or schedule a visit, the most direct method of contact is the telephone.
Try to get comfortable with email and utilizing the online patient portal. Often, this will give you the quicker and most detailed answer from your doctor and their team. Movement Disorder Specialists are in high demand - therefore, making frequent appointments are rare. Being able to communicate efficiently with your specialists and their staff in between appointments will be important.
In many instances, you will rotate between seeing your Movement Disorder Specialist and a Nurse Practitioner that partners with the specialist. This is a great way to stay connected with your specialist's team. There is great benefit in the education and wellness that your nurse practitioner at the clinic can provide. Sometimes, people even prefer to see the Nurse Practitioner over the Movement Disorder Specialist once an official diagnosis has been made.
Should you need to see your specialist and they are not available, consider a local neurologist that may have an opening, but be sure you clearly communicate everything about your current situation, keeping both teams in the know and possibly even consult with your movement disorder specialist prior to making any changes.
Disclaimer: The Parkinson Association of Alabama encourages all diagnosed with Parkinson's to consult with a Movement Disorder Specialist. However, the PAA does not endorse any specific Movement Disorder Specialist. All practicing Neurologists and Movement Disorder Specialists in Alabama are listed as reported and registered with the Alabama Department of Public Health.
The Davis Phinney Foundation. Every Victory Counts. Living with Parkinson's. "Manual." Sixth Edition. 2021.