

American Parkinson Disease Association Massachusetts (APDA MA) held a webinar in January, focused on the role of your healthcare team, specifically your primary care physician and neurologist. The speakers — a primary care physician and a movement disorder specialist from Boston University – discussed how to coordinate with your healthcare team for best care. They also shared scenarios and the role that your healthcare providers play in each.
There are many challenges in communication and care coordination in our current healthcare system. Here is a list from the primary care physician (PCP) about strategies for coordinating care:
- Be sure you have a PCP and that you schedule regular appointments based on your health history (at least annually)
- Provide the name and contact information of your healthcare team members at check-in
- Ask your doctors how they communicate with each other
- Take advantage of new communication systems available in many settings (patient portal, etc.)
- Come to each visit prepared
This APDA MA webinar was recorded, and is accessible on YouTube here
See my notes below for the session.
Regards,
Sheela Sakariya
“Managing Your Healthcare: Communication between the Primary Care Doctor and Neurologist” – Webinar notes
Webinar Host: American Parkinson Disease Association Massachusetts (APDA MA)
Webinar Date: January 19, 2022
Speakers: Terrell Johnson, MD, primary care physician, Boston University and Stephanie Bissonnette, DO, MPH, movement disorder specialist, Boston University
Summary by: Sheela Sakariya, Stanford Parkinson’s Community Outreach
Primary healthcare team
- Diagnosis and medical management: movement disorders specialist
- Psycho-social support: psychiatrist, social worker, or psychologist
- Exercise and wellness: tai chi, yoga, dance, boxing
- General health: primary care, subspecialists, NP, PA
- Rehabilitation services: PT, OT, speech therapy
Role of a primary care physician
A primary care physician practices general healthcare, addressing a number of health concerns for patients. They are typically the first person you talk to if you have a health concern.
- Preventive care (stopping illness before it happens)
- Treatment of common acute illnesses
- Early detection of illnesses of conditions (such as cancer)
- Management of chronic (long-lasting) conditions
- A referral to a subspecialist for example urologist, cardiologist
Role of a neurologist
Neurologists are concerned with the study and treatment of disorders of the nervous system. They reate many conditions including stroke, headaches, pain, seizures, memory disorders. Many neurologists develop a subspecialty including movement disorders. These neurologists are called movement disorder specialists.
What is a movement disorder specialist?
- A movement disorders specialist is a neurologist who has undergone an extra 1-2 years of PD-related training known as movement disorders fellowship and goes on to focus their practice on PD and related disorders
- A movement disorders specialist may be especially adept at managing PD medications and side effects, managing non-motor symptoms of PD, administering botulinum toxin injections and programming DBS.
Why a movement disorder specialist?
- Keep up on new developments in the field
- Work with other healthcare professionals who have specialized knowledge of PD (for example, physical therapist)
- Have increased access to clinical trials
- Are familiar with community support systems
Some situations require collaboration
- Diagnosis
- Bladder dysfunction
- Constipation
- Depression and mood changes
- Sleep disorder
- Orthostatic hypotension
- Hospitalization
- When it is not Parkinson related
Scenario One
Sam is a 63 year old mail carrier who noticed a tremor in his left hand that comes and goes and seems to be worse at the end of his route. He decides to make an appointment with his primary care physician (PCP) who he last saw 1.5 years ago. He is not sure if it is even worth mentioning but since he is overdue for a visit he will discuss.
Role of PCP
- Primary care providers are often the first touch point for a PD diagnosis
- May order tests such as MRI or bloodwork
- May check medication list
- Referral to neurology
Scenario Two
Pam is 56 years old and has been living with a diagnosis of Parkinson’s for 11 years. She saw her neurologist who noticed she has lost about 13 lbs since her last visit. She reports she is not trying to lose weight.
Role of PCP and neurologist
Weight loss in PD can occur and may be related to excessive involuntary movements, loss of appetite, or for unknown reasons. However, even if a symptom is common it is important to rule out her conditions not related to PD. In other words it is important to not assume everything is related to the diagnosis of PD. The following important screenings should not be avoided in healthcare:
- Cancer screenings: colorectal, breast, lung, cervical, and prostate
- Osteoporosis to prevent fractures
- Abdominal aortic aneurysm
- Skin cancer
Colorectal cancer screening
New recommendations in May 2021 recommend screening beginning at the age of 45. Multiple different options include: colonoscopy, sigmoidoscopy, stool DNA tests with FIT (multitarget stool DNA test), CT colonography
Breast cancer screening
The USPSTF recommends biannual screening beginning at age 50 ending at age 74. They have a less strong recommendation to begin at age 40, but this is an individual decision. American College of Gynecology recommends screening for average at age 40 repeating annually.
Prostate cancer screening
Signs and symptoms: urination frequency, urinary hesitancy, dribbling of urine, retention of urine, weak urinary system. The decision to be screened for prostate cancer should be on an individual basis in men aged 55 to 69. Screening is a prostate-specific antigen test.
Scenario Three
Peter is 74 and feels dizzy all of the time. At his neurology appointment, the nurse took his blood pressure. It was 101/62 when he was sitting and when standing his blood pressure dropped to 80/48. His neurologist noticed he is on two blood pressure medications. He recently changed his diabetes medication and shared that “things could be better in that department.” He does not drink fluids even though his wife reminds him all day long because he does not want to have frequent trips to the bathroom.
Role of PCP and neurologist
- Adjustment of current medication may be needed
- Treatment of non-motor symptoms often uses commonly prescribed medications in primary care
- Some neurologist feel comfortable starting meds but PCP collaboration is essential
Confusion or delirium
- Often a sign of something else going on
- Most common is infection: urinary tract infection, COVD19, pneumonia
- Head injury
- Constipation
- Blood sugar
- Medication mix up
- Under dosing parkinson’s medication
Strategies for coordinating care
There are many challenges in communication and care coordination in our current healthcare system. Some strategies to improve care include
- Be sure you have a PCP and that you schedule regular appointments based on your health history (at least annually)
- Provide the name and contact information of your healthcare team members at check-in
- Ask your doctors how they communicate with each other
- Take advantage of new communication systems available in many settings (patient portal, etc.)
- Come to each visit prepared
Preparing for your appointment
- Aim to arrive early and anticipate delays in getting to the office
- Bring a list of all medications including name, dose, and when you started or stopped since the last visit. These should include over the counter medications.
- Keep dates of any health care appointments, trips to the ER, hospitalizations, or new onset of a new condition
- “Prioritize” concerns that you would like to speak with your physician
- Bring any medical devices (glucometer, BP machine) to your PCP appt
What if you don’t have a PCP
- Check with your insurance for covered providers in your area
- Local hospitals can provide you with a list of PCPs who are accepting new patients
- Ask those you trust who they recommend
- Ask your neurologist for a recommendation
- Online websites such as “Zocdoc”