An interview with Desirae Mearns from the American Parkinson Disease Association (APDA)- South Florida on July 28, 2023 by George Ackerman, Ph.D, J.D.
Desirae Mearns has her bachelor’s and Executive MBA from Florida Atlantic University where she interned with a local nonprofit and fell in love with senior services. With her Six Sigma Greenbelt and 3rd generation South Floridian connections, it was only natural to pursue a career that would challenge her many talents. She is a mother of two, proud wife to a Publix manager, and enjoys fishing, 5ks, and tending to her unruly garden. She joined the APDA Florida Chapter in April of 2023 and looks forward to helping the chapter expand throughout the state while helping the PD community live life to the fullest!
Please tell me a little about your background and what got you involved with awareness.
I began my non-profit journey with the Area Agency on Aging of Palm Beach and the Treasure Coast Inc as a helpline specialist moving quickly into project management with the SHINE program for Free and Unbiased Medicare counseling. I loved problem solving with the underserved seniors and helping all Medicare beneficiaries understand their benefits and navigate the options at every step of their Medicare journey. APDA has opened my eyes to the difficulties of Parkinson resources, information, and access to care needs in Florida and I am thrilled to work with an awesome team to make that more positive and available for our PD community.
Can you tell me more about your advocacy?
Working with Persons with Parkinson’s and their Care Partners is about listening to their needs and taking the time to digest and research what is available. So many are confused on steps after a diagnosis or are scared about the future. I take pride in helping connect the PD community with the right tool and experience to positively impact their journey. I cannot diagnose, treat, or research, but I can certainly show compassion and use my experience to guide them in the right direction.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
Just before joining the APDA team, I worked for an amazing family that did so much for the community and encouraged us to volunteer and learn how to best serve our home care clients and their families. I found myself gravitating to Parkinson’s issues and information as there were so many families that needed support and guidance. As I learned more about the different organizations that support PD, I stumbled across APDA. After reviewing the awesome webinars, publications, and podcast by Dr. Gilbert I was hooked! The senior services world can be intimidating and exhausting for anyone trying their best to age in place or care for a loved one with a chronic condition. My passion stems from my information and referral background, where breaking down complicated systems and information to share in a friendly and compassionate manner with an overwhelmed patient or care partner in a way they can feel more comfortable in their options is a warm and fuzzy feeling I live for! I knew I could make a difference in the lives of those impacted by PD and am honored to do so for my home state.
What type of goals do individuals with Parkinson’s have when working with you?
Partnership! Not one person can do it all, so when I meet others who are looking to bring awareness to Parkinson’s and the abilities of patients it brings a new opportunity to make the PD community that much stronger. Our team at APDA works hard to generate all of the positive that can happen when someone impacted by Parkinson’s takes their first steps towards understanding and navigating a diagnosis. PWP are living fuller more supported lives and partnering with others who have awareness goals for PD is something truly special.
What effect can your advocacy have on an individual with Parkinson’s?
I like to think that I can bring more positivity to living with Parkinson’s. I share all the time about PWP I have met that blow me away with their routines for movement and special way they stay optimistic from diagnosis on. There is no connection quite like the PD community and they inspire me every day, I hope that my advocacy/awareness has the same effect on them.
What would you like to see as a future goal for your advocacy?
I would love to see the State of Florida get more involved with Parkinson’s funding, research, and resources. I believe we have a true opportunity as a high retirement rate territory to offer a well-rounded PD community for current and future Florida residents.
What events do you participate in?
Currently, I am on the planning side of events such as regular support groups, educational talks, and our upcoming Optimism Walk in November. I am so excited to have new events to share with the Florida PD community and hope to meet more inspiring PWP and Care Partners!
How does this also assist the caregivers?
Caregiver burnout is nothing to take lightly! We choose to call caregivers for someone with Parkinson’s a Care Partner because to a certain degree the PWP needs to take a part in their care as well. Our resources help with support, education, and most recently the communication and connection between CP and PWP with APDA Parkinsex kit. We collaborate with many community partners to connect with CP specific groups, many of our support groups are structured to provide CP with their own time and space to share with one another.
How can someone get in touch? What is your website?
The Florida Chapter helpline is 954-952-0429 and our chapter site is apdaparkinson.org/community/florida
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
Learn all the Learn and Do all the Do, never know who might watch and be inspired by you!