On Saturday, October 18th the City of Philadelphia hosted Partners in Parkinson’s, a collaborative health initiative of the Michael J. Fox Foundation and AbbVie pharmaceutical, designed to help the Parkinson’s patient and their families navigate the world of Parkinson’s, by better understanding Parkinson’s disease and connecting with medical and community resources to optimize care and enhance patient quality of life. With nearly 500 community members in attendance, Parkinson’s patients and their loved ones learned strategies to optimize Parkinson’s care at every stage of the disease. Whether newly diagnosed or a Parkinson’s veteran, this daylong event proved to be one stop shopping for all, connecting patients with over two dozen local and national partners for Parkinson’s.
The morning session kicked off with a moderated patient panel which gave insight into the world of Parkinson’s from the patient perspective. Parkinson’s panelists highlighted common PD symptoms as well as individual challenges in disease management. All panelists emphasized the importance of creating a multi-disciplinary care team including a movement disorders specialist, nurse, speech, physical and occupational therapists and social worker. Penn Medicine’s Lama Chahine, MD., and Parkinson’s patients Beth Ann and Gary Chard demonstrated a typical clinic visit with a movement disorders specialist sharing knowledge of the types of information and supports a person with Parkinson’s can expect. Dr. Chahine highlighted the four components of an appointment with a movement disorders specialist: consultation, neurological examination, non-motor symptom evaluation and caregiver assessment (see photo below). The physician/patient demonstration was well received by participants and quite an eye opener for many, as Dr. Chahine’s thorough evaluation and empathetic approach proved to be on the cutting edge of PD knowledge and resources!
Research was the next topic to take center stage. Drs. Maurizio Facheris, MD, MSc, Associate Director, Research Programs, The Michael J. Fox Foundation., Daniel Kremens, MD, JD, Associate Professor of Neurology and Co-Director of the Parkinson’s Disease and Movement Disorders Program at Thomas Jefferson University, Lama Chahine, MD, Instructor of Neurology Parkinson’s Disease and Movement Disorders Center, University of Pennsylvania and Meredith Spindler, MD, Clinical Assistant Professor Parkinson’s Disease and Movement Disorders Center, University of Pennsylvania updated the audience on promising PD research to treat, slow and stop the progression of Parkinson’s disease. The all physician panel fielded moderated Q&As about the drug development process, biomarkers, genetic and environmental causes of Parkinson’s disease, the critical need for people with and without PD to participate in clinical trials and general PD related questions. While physician panel discussions gave us a lot to digest, individual break-out sessions:
- Living Well with Parkinson’s
- Building Connections
- I’m Still Wondering About…
provided a friendly atmosphere for the Parkinson’s patient to solicit peer support and share ways of taking care of the mind, body and spirit.
As a Penn Medicine resource exhibitor, I had the opportunity to speak with Parkinson’s patients, caregivers and family members about their Partners in Parkinson’s experience and here’s what some had to say:
“I had no idea how much support was out there for me!” Sarah P., York PA
“I’ve participated in Parkinson’s research for years, now my daughter will support me in PD research by joining a clinical trial” Catherine and Karen, Bethlehem, PA
“Although I am happy being followed by my general neurologist, my clinic visit was never as thorough as the (demonstrated) mock visit with the movement disorders specialist. Great job!”
Parkinson’s disease (PD) has affected the lives of more than 1 million American families- and it came without invitation. People with Parkinson’s and their families may not have had a choice in receiving the diagnosis, but they have chosen to live each day with intention and to fully experience each minute of every granted moment. In fact, we can all choose to have the courage to live beautifully, share constantly and love without limits.
Published by: Candace Syres, Outreach Coordinator/Research Assistant, Parkinson’s Disease and Movement Disorders Center, Penn Neuroscience Center at Pennsylvania Hospital
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Learn about PD research at Penn’s Udall Center for Parkinson’s Disease Research.