Written by Connie Carpenter Phinney 

Our May meetup featured a special guest: Dr. Jori Fleisher, a movement disorders neurologist affiliated with Rush University. As usual, the meetup also featured moderator Polly Dawkins and two Foundation Ambassadors: Gail Gitin and Pat Donahoo. 

Dr. Fleisher is a researcher and clinician who has loved ones with Parkinson’s, so she has experienced the full gamut of caring for people with Parkinson’s. Her medical training included a four-year residency in neurology and a two-year fellowship to become a movement disorder specialist.  

You can watch a video recording of the meetup below. Also, consider subscribing to our YouTube channel to be notified every time we upload a new recording. 

MEETUP NOTES 

BUILDING THE RIGHT CARE TEAM 

During the meetup, we talked about the importance of finding the right medical team for your person with Parkinson’s and how this might involve a change or the addition of a new doctor. Building the strongest care team possible is essential to help reduce care partner strain. If the person you are looking after is suffering, so are you. 

Dr. Fleisher noted that in her clinic, she can always find something to help a person with Parkinson’s. She tells the fellows she works with that the only unacceptable answer to a patient’s problem is to tell them there is nothing that can be done. This is essential for you, the care partner, to know: It’s not acceptable if you are given that answer from a clinician. There are always things that can be done.  

FINDING MENTAL HEALTH SUPPORT 

An audience member asked how to find a psychologist or other therapist. Dr. Fleisher advised asking your general practice doctor or neurologist for suggestions. In some cases, there are social workers on staff within neurology centers and movement disorder clinics. If, after several visits these social workers can’t provide the help you need, they may refer you to another provider.

If offices in your area don’t have social workers available, try reaching out to members of a local support group for recommendations. Psychology Today lists therapists and other mental health support personnel in your area. Their site has a powerful search engine that may help you find a therapist who specializes in caregiver strain.

Dr. FLEISHER’S RESEARCH

Dr. Fleisher talked about her research, which focuses on education of care partners through mentoring, since the health care system is not set up to help us help our person with Parkinson’s. Her work involves bringing in all the various specialists to train mentors who can work with people like us: the care partners on the ground. 

The experts in Dr. Fleisher’s movement disorders practice include a dietician, a neuropalliative care specialist, and a chaplain—each with their own areas of expertise. Some audience members wondered how these specialists could provide support for them. Care partners need the information and guidance these experts provide. It eases our load. Without it, both we and our people with Parkinson’s suffer. Dr. Fleisher advises us to seek out mentors and/or other expert support so we can do our jobs better.  

For more information about Dr. Fleisher’s ongoing research study involving care partners, email <a href="