An interview with Frank Antonicelli Embracing Parkinson’s on August 16, 2024.
Biography
My name is Frank Antonicelli, and I was diagnosed with Parkinson’s Disease at the age of 43 in 2007. Since then, I have been trying to manage the condition and live the best life I can. In 2020, I had the DBS (Deep Brain Stimulation) procedure, which has really improved my quality of life. Given this opportunity, I set out to do all the creative endeavors I always wanted to do but never made time for. I started to write again, create music (+videos) and launched a small publishing company. This has also inspired me to become a Parkinson’s advocate, sharing my story to help others.
Can you tell me more about your Advocacy?
I’m relatively new to advocacy, however my current work focuses on helping those with Parkinson’s by providing information, support, and a sense of community. I share my own experience with PD, including the treatments and health strategies I’ve developed over the years, to offer insights and guidance to others navigating their own journeys with the condition. I hope to provide encouragement on how to live a full, meaningful life despite the challenges of the condition.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
My passion lies in helping others with Parkinson’s feel understood and supported. When I was first diagnosed with PD in 2007, there weren’t as many resources available as there are today. I got involved after realizing how isolating the diagnosis can be, especially for people facing a Young Onset Parkinson’s Disease diagnosis. I want others to feel less alone.
What type of goals do individuals with Parkinson’s have when seeing your Advocacy?
I feel that people affected by the condition often seek out advice, emotional support, and inspiration. I’m hoping that these are things that can be gained from my advocacy. I want to help others learn how to live well with the disease, connect with others who understand their experiences, and find hope for the future and a cure.
What type of training and how long are the programs?
My work isn’t really tied to formal training programs; instead, it’s about sharing my personal experiences with the condition, offering guidance and insight on the things that have helped me along the way. I try to provide support through my website, social media presence and my audiobook, “Embracing Parkinson’s”, as resources anyone can access.
What effect can your Advocacy have on an individual with Parkinson’s?
I’m hoping it can help people with the condition feel less alone and more empowered in managing their condition. Through sharing my story, I hope to inspire others to face their challenges with courage and to find strength in embracing and living with PD.
What would you like to see as a future goal for your Advocacy?
Ultimately, I’d like to reach more people globally, particularly those who may not have easy access to reliable PD resources and support. I’d also like the opportunity to partner with organizations and researchers to contribute to the ongoing work towards a cure.
What events do you participate in?
While I am new to advocacy and haven’t yet participated in any events, I’m eager to get involved and make my voice heard. I’m actively exploring opportunities to participate in Parkinson’s awareness walks, fundraising, talks, etc… Anything to help spread the word. My goal is to engage with the community and contribute to events that raise awareness and support for PD.
How does this also assist the caregivers?
My advocacy also extends to caregivers by offering them insights into the challenges faced by those with Parkinson’s, as well as advice on how to provide effective support. By understanding the patient’s personal perspective with PD, caregivers can provide more informed and empathetic care.
How can someone get in touch? What is your website?
People can contact me directly by email at embracingparkinsons@gmail.com. I also have a website at https://embracingparkinsons.com
How can others also become advocates for awareness?
Others can become advocates by sharing their own stories, raising awareness through social media, participating in fundraising events, and supporting research initiatives. I believe advocacy is about making your voice heard and encouraging others to do the same.
In your opinion, what is the key to effective advocacy?
I strongly believe the key to effective advocacy is authenticity. Sharing the real experiences, struggles, and victories that come with Parkinson’s allows others to connect on a more personal and impacting level. It’s also important to listen to others’ stories and provide a platform for their voices to be heard.
How can we better fundraise to support a cure for Parkinson’s?
To better fundraise, we need to engage a wider audience by making Parkinson’s research and support efforts more visible. Partnering with businesses, organizing community events, and leveraging social media to reach potential donors can significantly boost fundraising efforts.
What other activities do you undertake to help improve and support your daily living, e.g., exercise and alternative remedies?
I follow a daily routine of physical exercise including stretches, bike riding and strength training. I’ve found that being consistent has really helped with managing my symptoms and maintaining mobility. I also incorporate faith, mindfulness and a healthy diet to support my overall well-being.
Why should people who don’t have Parkinson’s care about this?
Parkinson’s affects not just the people diagnosed with the condition, but also their families, friends, and communities. Supporting Parkinson’s research and advocacy helps create a better future for everyone and can help develop effective treatments and ultimately a cure.
Have you had any family members or relatives affected by Parkinson’s disease?
I don’t have a direct family history of Parkinson’s, and prior to being diagnosed, I had never met anyone with the condition. This is what made my own diagnosis at 43 such an unknown and uncertain time for me. I am thankful there are so many great resources available now and people that are open and sharing their experiences with the condition.
If you had one song that would tell us more about you or represent your life, which song would it be?
At this moment, If I had to choose one song that represents me, it would be one called “There 4 U” from my band, Animal Speak.
I wrote this song when going through a particularly tough spot in life. The message of the song is to remember that you are not alone in this journey and that there are people out there to help you get through the good and bad. Here is our video: https://www.youtube.com/watch?v=PIfRjG1B2Xc
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
“Living with Parkinson’s Disease (PD) is a day-to-day challenge, but with steady determination and a supportive community, we can find strength, resilience, and new ways to thrive.”