Episode 177: The Role of Caregivers in Parkinson’s Dementia

Jori Fleisher, MD MSCE FAAN is a movement disorders neurologist and Associate Professor of Neurological Sciences at Rush University Medical Center. She co-directs the Rush Parkinson’s Foundation Center of Excellence and leads the Rush Advanced Interdisciplinary Movement Disorders Supportive Care (AIMS) Clinic, CurePSP Center of Care, and Lewy Body Dementia Association Research Center of Excellence. Dr. Fleisher completed her neurology, global health equities, movement disorders, and epidemiology training at the University of Pennsylvania. She has additional training in palliative care, health services and implementation research, and advocacy leadership. Supported by the NIH, foundations, and philanthropy, Dr. Fleisher’s research focuses on designing and implementing novel models of care and support for people living with neurodegenerative disorders. She is the Principal Investigator of the PERSEVERE Trial, a first-of-its-kind entirely virtual, national, randomized controlled trial to educate and empower family care partners whose loved ones have Parkinson's or Lewy Body Dementia. She is a co-investigator on several other national NIH-funded studies, an Editorial Board member of Brain & Life, an internationally recognized speaker, and has mentored over 25 trainees. 

In 2006, Claire Pensyl and her husband, Ira Bell, married, retired, and then loved and laughed their way through more than 15 years of Parkinson’s Disease, Parkinson’s Disease Dementia and Lewy Body Dementia. Both had personal trainers, physical therapists and social workers, and Ira also had neuro-physical, occupational and speech therapists. They participated in person and on Zoom in exercise classes, Rock Steady Boxing classes, dance classes, improv classes, adaptive sailing, clinical trials with at least 4 different clinical teams, Fox Insight and Fox PPMI, support groups and many educational programs on PD, PDD and LBD. They developed a nationwide network of friends in the PD and LBD community. Claire now continues those friendships, is a member of care partner advisor councils for clinical trials at Rush University and the University of Rochester, volunteers for the Parkinson’s Program at Lake Forest Hospital, supports programming and research that benefits people with Parkinson’s, people with Lewy Body Dementia, and care partners now rather than in the future, is preparing to take the enrichment training course offered by the Dance for Parkinson’s program sponsored by the Mark Morris Dance Group and is an advocate for more palliative care for the PD and LBD community. She is grateful for the growth she experienced as a care partner and continues to be thankful for the opportunity to be Ira’s care partner.