Parkinson’s is a multifaceted disease, and as such, there are many ways people with Parkinson’s disease (PD) can find help, including through medications, exercise, occupational and physical therapy, dance and music therapy, and meditation and mindfulness practices. Another important way is to join a support group to share experiences, learn from peers, and express problems and emotions. Such groups are not just for the person with PD, and care partners often attend and benefit.
In this episode, Allison Allen and Anne Kosem, both licensed clinical social workers and co-coordinators of the Parkinson’s Foundation Center of Excellence at Duke University in North Carolina, talk about their experiences and relate some of their knowledge derived from their years facilitating support groups. They discuss how to find a suitable group, what to expect, and how to participate. They also offer some of the considerations for starting a group if one is not already available in an area. These days, with the COVID-19 pandemic, many groups have gone online, widening the choices by opening up possibilities for choosing groups not in one’s own geographic area.
- Episode 111: Alone in a Crowd: Overcoming Isolation (podcast)
- Resources for Support Group Leaders
- List Your Support Group
- Support Group Guide
- Get Involved: Parkinson’s Awareness Month
About This Episode
Released: March 23, 2021
Allison Allen, LCSW, MSW
Allison Allen is a Licensed Clinical Social Worker and Center of Excellence Coordinator at the Duke Movement Disorders Center, a Parkinson’s Foundation Center of Excellence. As a member of the interdisciplinary Movement Disorders team, she has particular interest in mental health, non-motor symptoms, crisis support, family centered care and facilitating support groups. She also works with the World Parkinson’s Coalition, having facilitated programs at the World Parkinson’s Congress 2019 in Kyoto, Japan, presented in the recent carepartner webinar series on Mental Health and is currently on the planning committee for the Carepartner Lounge at the upcoming Congress in 2022. Allison is also a member of the Parkinson's Outcomes Project Mental Health Work Group. In 2020, Allison was awarded the Duke Brandy McDaniel Clinical Social Worker of the year at Duke University Medical Center.
Anne Kosem, LCSW
Anne Kosem joined the Duke Movement Disorders team in 2019 as a Clinical Social Worker and Center of Excellence Co-Coordinator. She has worked at Duke for 22 years providing counseling and support to patients and their carepartners around difficult diagnosis, adjustment to illness, palliative care and end of life issues. She created and facilitated carepartner support groups and educational programs in the Bone Marrow Transplant Clinic and the Pediatric Oncology Division. She is currently co-leading two support groups in the Movement Disorders clinic: one for patients with Parkinson’s disease and their carepartners and the other for patients with Huntington’s disease and their carepartners and is in the process of developing a group for patients with Early Onset Parkinson’s disease. She has served as the President of the Association of Pediatric Oncology Social Work and also President of the North Carolina Social Work Oncology Group. She has a special interest in training the next generation of Social Workers. She has served as a field instructor for the University of North Carolina School of Social Work for many years and co-developed and presented a workshop for new Pediatric Oncology Social Workers at the Association of Pediatric Oncology Social Work national conference for 6 consecutive years. She also served as a Team Leader in the Duke Department of Social Work for 10 years providing supervision and training to team members.
For all of our Substantial Matters podcast episodes, visit parkinson.org/podcast.