Dancing Eyes Podcast
My name is Frankie Caputo and I was born with congenital nystagmus. Throughout most of my childhood, I allowed my nystagmus to define me. High school was pretty brutal and I was constantly riddled with insecurities about my eyes. It wasn’t until I hit my early 20’s that I realized how much more there is to life than my eye condition. Around this time I began a journey of self discovery focusing on my mind, body and soul. I learned that by consciously changing the negative thoughts that I had about my nystagmus into positive and even humorous ones, that the condition was having less of a hold over me.
Before the Dancing Eyes Podcast, the only nystagmus related content I could find online were videos of doctors teaching about the condition or surgical procedures. But I didn’t care about that. I wanted to relate to people who live with nystagmus. I wanted to know that even with nystagmus, it was possible to live a rich and fulfilling life. In my search for community and understanding, the Dancing Eyes Podcast was born.
On the Dancing Eyes Podcast, I have conversations with interesting from people all around the world who were born with nystagmus. I’ve interviewed students, doctors, parents, psychologists, musicians, designers, etc, all who were born with nystagmus!
Come join me on a journey of understanding and self discovery as we navigate our lives with nystagmus together!
All links - https://linktr.ee/dancingeyespodcast
Listen on:
Episodes
Jun 6, 2022
Jun 6, 2022
59 min
In episode 15 of The Dancing Eyes Podcast, Sam joins me to have a laid back conversation about a wide variety of things including our eyes, music preferences, and elephants that can paint.
Dancing Eyes Podcast is brought to you by The American Nystagmus Network. The American Nystagmus Network works to improve the quality of life for all persons and families affected by nystagmus through organized community support, education, public awareness, and research.
Podcast Instagram: https://www.instagram.com/dancingeyespodcast/
Personal Instagram: https://www.instagram.com/frankiecaputo22/
All Links https://linktr.ee/dancingeyespodcast
Email: frankiecaputo@gmail.com
NEW EPISODES ON THE FIRST AND THIRD MONDAY OF EVERY MONTH Thank you for watching. I hope everyone enjoys!
May 16, 2022
May 16, 2022
1 hr 33 min
In episode 14 of The Dancing Eyes Podcast, I have 6 parents joining me to talk about their experience raising children with Nystagmus.
Greg, Michele, Domenica, Tonya, Jen and Shari (my mom) share stories and tips about parenting a child with Nystagmus.
Podcast Instagram: https://www.instagram.com/dancingeyespodcast/
Personal Instagram: https://www.instagram.com/frankiecaputo22/
All Links https://linktr.ee/dancingeyespodcast
Email: frankiecaputo@gmail.com
NEW EPISODES ON THE FIRST AND THIRD MONDAY OF EVERY MONTH Thank you for watching. I hope everyone enjoys!
May 2, 2022
May 2, 2022
51 min
Alessio talks to me about his experience living with Nystagmus and Cerebral Palsy. We discuss his experience playing on multiple soccer teams, his 3d printed designs, his recently completed half marathon, and a lot more!
Alessio's Instagram: https://www.instagram.com/the_disabled_designer/
Alessio's Half marathon footage: https://www.instagram.com/p/CaxQj9sot4cBhYmLaWKtOeGg37q-t5xFkm3rUo0/
Podcast Instagram: https://www.instagram.com/dancingeyespodcast/
Personal Instagram: https://www.instagram.com/frankiecaputo22/
All Links https://linktr.ee/dancingeyespodcast
Email: frankiecaputo@gmail.com
NEW EPISODES ON THE FIRST AND THIRD MONDAY OF EVERY MONTH
Thank you for watching. I hope everyone enjoys!
Apr 19, 2022
Apr 19, 2022
53 min
Alyssa is a freshman in college and was born with congenital nystagmus.
She is currently in school for music education and she enjoys opera and musical theater.
Podcast Instagram: https://www.instagram.com/dancingeyespodcast/
Personal Instagram: https://www.instagram.com/frankiecaputo22/
All Links https://linktr.ee/dancingeyespodcast
Email: frankiecaputo@gmail.com
NEW EPISODES ON THE FIRST AND THIRD MONDAY OF EVERY MONTH Thank you for watching. I hope everyone enjoys!
Apr 4, 2022
Apr 4, 2022
46 min
Ellie is a senior in high school and was born with congenital nystagmus. In this episode we discuss some tips on living with nystagmus and we also discuss a controversial post in the American Nystagmus Network's facebook group from about a month ago. We discuss a lot more as well.
Podcast Instagram: https://www.instagram.com/dancingeyespodcast/
Personal Instagram: https://www.instagram.com/frankiecaputo/
All Links https://linktr.ee/dancingeyespodcast
Email: frankiecaputo@gmail.com
NEW EPISODES ON THE FIRST AND THIRD MONDAY OF EVERY MONTH Thank you for listening. I hope everyone enjoys!
Mar 21, 2022
Mar 21, 2022
1 hr 7 min
In episode 10 of The Dancing Eyes Podcast, Alex joins me to talk about his experience living with Nystagmus. He is a freshman in high school and just competed in his first Deca competition. Timestamps for conversation topics are listed below. TIMESTAMPS 0:00 Introduction 01:05 Episode begins 01:35 Alex backstory 03:35 Involvement with American Nystagmus Association 04:35 Doctor stories/ playing sports 07:35 Head tilt/ zoom calls 09:45 Avoiding head tilt while having conversations or pictures/ looking for Nystagmus sources as a teenager 14:30 Creation of the podcast/ logo design 16:25 Do you consider Nystagmus to be a disability? 18:30 What other conditions do you have? 19:05 Alex’s experience with his first Deca competition/ involvement of Nystagmus in the competition 31:35 Bringing up the Nystagmus when meeting new people/ difficulties making friends/ school experiences 37:45 Obtaining a driver's license 38:40 I demonstrate the eye exercises that I have been doing 42:30 Back to the driving talks/ technology and Nystagmus 48:15 504 plan/ school accommodations 50:45 Alex’s Nystagmus conference experience/ public speaking 58:20 Nystagmus in Alex’s family 59:55 My experience with procedures on my eyes (Kestenbaum and lasik) Podcast Instagram: https://www.instagram.com/dancingeyespodcast/ Personal Instagram: https://www.instagram.com/frankiecaputo22/ NEW EPISODES ON THE FIRST AND THIRD MONDAY OF EVERY MONTH Thank you for watching. Hope you guys enjoy :)
Mar 8, 2022
Mar 8, 2022
1 hr 18 min
This has to be one of my favorite conversations so far in my journey of the Dancing Eyes Podcast. John Paul was born with Congenital Nystagmus and is currently an audio engineer. We discuss his profession as well as some philosophy. Our conversation for this episode may have been a little different from the usual, but I enjoyed it very much and I hope you guys do too!
Mar 8, 2022
Mar 8, 2022
1 hr 1 min
Talene joins me today to discuss a lot of topics that I find interesting. We talk about how meditating affects the movement of her eyes. She also shares her experience with acupuncture for her Nystagmus and a lot more!
Mar 8, 2022
Mar 8, 2022
44 min
Mitchell is a filmmaker from Scotland who was born with Congenital Nystagmus. In this episode we talk about how Nystagmus affects his ability to write and star in his own movies. We also talk about how Nystagmus affected his childhood and a lot more! Here is a link to his most recent film. https://www.youtube.com/watch?v=5rorfGDx5p4&t=15s
Mar 3, 2022
Mar 3, 2022
59 min
Chloe is a high school student who was born with Congenital Nystagmus. In the 6th episode of the Dancing Eyes Podcast she shares with me how the condition has affected her life. We talk about struggling to look people in the eyes, her high school experience, and I may have spoken about Shrek too much.