An interview with Susan Belesi from the Parkinson Place Center on September 25, 26 2023 by George Ackerman, Ph.D, J.D.
Biography
My name is Susan Belesi and I was raised in Bayside, Queens, New York. I have been married to Craig Belesi for 41 years, have two children and hold a BFA – Graphic Arts. We moved to Sarasota, FL 7 years ago.
Please tell me a little about your background.
My husband was diagnosed 23 years ago with Young Onset Parkinson disease. Craig’s two brothers also had PD and together they were “Three Brothers Strong”. Our mission as a family was to fight together to help not only ourselves but others inflicted with this disease live better.
Can you tell me more about your organization?
This mission led us to raise awareness and collect donations of over excess of $100,000 for research. We participated in the NYC Unity Walk each year and now support Parkinson Place Center.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
For the last five years, I have been the Director of Programs and Member Relations for Parkinson Place Center for all Movement Disorders in Sarasota, Fl. With little success in finding my husband treatment and therapies in New York that were easily accessible and huge co-payments, I googled “free things for PD” and up came Parkinson Place. My daughter and I took a trip to visit the facility and area and immediately knew this was the place for us. In the last seven years, he has attended classes daily, connects with others dealing with the same disease and it happier and more independent.
What type of goals do individuals with Parkinson’s have when working with you?
Parkinson Place Center offers over 85 monthly programs which include group exercise classes, educational presentations, and support groups. We have a dedicated staff directed by Larry Hoffheimer, our chairman. We are involved with the community which is very supportive and brings lunch twice a week to the facility and is there for anything our members need. All our classes are taught by professionals, and we also have graduate students on a rotational basis to help.
What type of training and how long are the programs?
Everything is located in one facility and is free for membership and classes. It is a place for people inflicted with movement disorders and their caregivers to only concern themselves with physically and mentally keeping themselves well.
What effect can it have on an individual with Parkinson’s?
Caregivers can participate in every class to stay healthy and happy also. The caregivers support group meets once a week to ensure support is there for all.
What would you like to see as a future goal for your programs?
My career and advocacy goal is to bring continued awareness about the disease (and other movement disorders) and to spread the word about Parkinson Place Center. I want people to know they don’t have to feel or be alone battling this disease. For those who don’t live in the area, we zoom our classes live in 41 states and 7 countries each day. We are here to help everyone and together we become a family.
How does this also assist the caregivers?
I re-evaluate each program on an ongoing basis, so we can keep bringing the best to our members and fill everyone’s needs. Part of my job (which doesn’t feel like a job responsibility) is to get to know each person, create and manage each program and bring them the best to fight this disease. The staff makes each one feels comfortable and makes the facility a “home away from home” in a warm, inviting environment.
How can someone get in touch? What is your website?
We can be found on our website is ParkinsonPlace.org or (941) 893-4188 x 1006. We are open Monday – Friday 9am-4pm.
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
For those who I meet each day I tell them…”Life will change but it can be happy. Exercise, eat well, keep social and laugh often…It’s the best medicine.