Following a Parkinson’s disease diagnosis, absorbing the news and coming to terms with the physical and mental changes can be overwhelming.
The Parkinson’s Education and Support Group at Rochester Regional Health, formerly known as Parkinson’s Strategies to Succeed & Thrive (PSST!), invites patients and their family members to learn and find support from one another, as well as specialists who are experienced in managing Parkinson's disease symptoms.
Sarah Wolf is a physical therapist with Rochester Regional Health and shares more about the group.
About the group
The Parkinson’s Education and Support Group was formed in 2019 and initially met in person before shifting to a virtual model in March 2020 at the start of the COVID-19 pandemic. Staff are hoping to shift toward a hybrid meeting model – with both in-person and virtual options – in the near future.
The hour-long sessions are free to attend and are held on the third Wednesday of every month at 1 p.m. Each session is run by a physical therapist, and vary based on the topic and time of year. There are typically 10-15 people in attendance, including people with Parkinson’s, caregivers, spouses, and family members.
Individuals with Parkinson’s disease who are referred by their neurologist to physical therapy will often find out about the support group through their physical therapist.
Anyone who wants to attend is welcome; there is no requirement to be a Rochester Regional Health patient.
If you or someone you know is interested in joining, send an email to Sarah Wolf at Sarah.Wolf2@rochesterregional.org or call (585) 368-6679.
A typical meeting
Currently most of the meetings are geared toward education surrounding Parkinson’s disease.
Presenters are brought in from clinical settings, as well as community organizations, to discuss different topics each month.
Examples of some topics include:
- Emotional wellbeing and adjusting to a Parkinson’s disease diagnosis
- Movement in Parkinson’s disease and beneficial exercises
- Dementia and cognitive changes
- Deep Brain Stimulation therapy
- Rochester Accessible Adventures
- Rock Steady Boxing
Presenters utilize PowerPoint presentations as well as physical demonstrations to illustrate educational content, and movements and exercises. Questions are welcome throughout the presentation.
“Exercise is one of the more important aspects of treating Parkinson’s through physical therapy,” Wolf said. “It can have many similar effects on symptoms as some of the medications taken by patients.”
Therapists also share resources, activities related to Parkinson’s disease happening in the Rochester area, and talk over any new relevant research. The slides of each presentation are shared at the end of the session for everyone to look over.
Support for Parkinson's disease
As the Parkinson's Education and Support Group continues to evolve, there is a hope to shift toward a model that allows for the first half to be centered on education and the second half focused on open discussion and conversation.
Wolf says the biggest asset of a support group like this one is having access to so many different providers within the healthcare system who can help to educate patients and caregivers. Being able to ask open questions to providers and get the information can be a huge benefit for everyone involved.
“As a healthcare provider, I can provide a lot of information, but the support part is so important,” Wolf said. “Asking questions and people relating to one another’s experiences – that really is the valuable part.”
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