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
Nov 22, 2022
Nov 22, 2022
49 min
Vision therapy and syntonics can be used to improve vision and lessen the movements of people with nystagmus. In episode 25 of the Dancing Eyes Podcast, Dr. Julie Steinhaur joins me to discuss her practice and the benefits of vision therapy and syntonics.
Have a consultation with Dr. Julie - https://visiont.krtra.com/t/LSW6qNgzcP9c
Vision Therapy Youtube Channel - https://www.youtube.com/@visontherapy/videos
TIMESTAMPS
0:00 Intro
1:05 What is vision therapy?
1:55 What is syntonics?
3:30 Are the syntonics always used when you practice vision therapy?
4:20 All of Dr. Julie’s patients have experienced at least a 2 line increase in their vision acuity.
8:20 What is the youngest age that Dr. Julie would have a patient do syntonics?
12:00 Do you see a decrease in the eye movements of your nystagmus patients?
16:35 Breathing technique demonstrations to slow down eyes
21:00 Does the new and improved vision remain once therapy is complete?
23:50 Vision therapy is available both in person and virtually.
30:20 How does someone know whether they should go for vision therapy or for a surgical procedure?
34:40 Do you see an increase in balance in your nystagmus patients?
37:40 Can you tell me some of your favorite success stories?
39:30 What are some common misconceptions about syntonics and why do some people choose to not practice vision therapy with them?
43:40 How much would vision therapy cost?
48:45 Closing words
Podcast Instagram: https://www.instagram.com/dancingeyespodcast/
Personal Instagram: https://www.instagram.com/frankiecaputocomedy/
Want to be a guest? https://form.jotform.com/222415937902154
All Links https://linktr.ee/dancingeyespodcast
Email: frankiecaputo@gmail.com
Thank you for watching. I hope everyone enjoys!
Oct 19, 2022
Oct 19, 2022
46 min
In episode 24 of the Dancing Eyes Podcast, Becky, a university student in England and creator of Becky's Blurred Perspective, joins me to chat about her life with nystagmus as well as answer some questions that listeners have sent in. Some questions include "Is it hard to find love with nystagmus"? and "How were your eye movements when you were younger compared to now"?
Becky's Blurred Perspective - https://beckysblurredperspective.co.uk/
Instagram - https://www.instagram.com/beckys.blurred.perspective/
TIMESTAMPS
0:00 Intro/ American Nystagmus Network
1:20 Episode begins/ Becky’s blog: Becky’s Blurred Perspective
4:40 Being hyper aware of our eyes
6:00 How did Becky become less insecure about her eyes?
7:55 The impact that influencers with nystagmus have on us
9:54 Becky’s friend who has nystagmus
12:15 Becky’s vision acuity
13:55 A nystagmus pet peeve
16:30 Not wanting to disclose our nystagmus during a job search
17:45 The stereotype that people with unordinary eyes lack intelligence
20:20 Becky’s thoughts on not being able to drive
23:50 Where does Becky find fulfillment?
25:00 Listener question #1 How are your eye movements now compared to when you were younger?
29:45 Listener question #2 Is it hard to find love?
40:10 Listener question #3 How do I discuss my child’s eyes in front of them?
45:15 Becky’s advice for people who are struggling with nystagmus
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. Visit them at https://nystagmus.org/new/
Podcast Instagram: https://www.instagram.com/dancingeyespodcast/
Personal Instagram: https://www.instagram.com/frankiecaputo22/
Want to be a guest? https://form.jotform.com/222415937902154
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!
Oct 3, 2022
Oct 3, 2022
1 hr 5 min
In episode 23 of the Dancing Eyes Podcast, Cameron joins me to talk about his work as a provisional psychologist and how nystagmus affects his job. We also discuss how living with nystagmus has an affect on our personalities and what we would do if we were given the option to to longer have the condition.
TIMESTAMPS
0:00 Intro/ American Nystagmus Network
1:44 Episode begins/ Cameron talks about being able to relate to previous guests
2:50 The nystagmus related content available online is not satisfying
6:27 How do you mention your nystagmus to others/ Cameron’s organic way of bringing it up in conversation
11:25 It is a relief when you meet someone who already knows what nystagmus is
13:10 How does your nystagmus affect sessions with your therapy patients?
15:42 What led Cameron to working in psychology?
17:30 Has Cameron’s knowledge of psychology helped him cope with his eyes?
18:55 When did nystagmus start playing a role in your life?
22:00 Cameron’s experience with his inability to drive.
26:50 Is the 20/20 system a bad way to measure our vision?
31:35 If you could get rid of your nystagmus right now, would you?
35:30 I love when I am in an environment in which sunglasses are necessary.
37:00 People have thanked me for mentioning my nystagmus to them.
39:10 How has nystagmus affected Cameron’s relationships with women?
42:20 Making jokes about our eyes/ coping mechanisms when passing by people who we can’t see/ comedy talk
54:40 Fun podcast idea
56:50 Cameron’s supportive friend/ awkward visually impaired scenarios
1:02:15 What is some advice for people living with nystagmus?
What is some advice for parents of children with nystagmus?
1:04:20 Closing words
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. Visit them at https://nystagmus.org/new/
Podcast Instagram: https://www.instagram.com/dancingeyespodcast/
Personal Instagram: https://www.instagram.com/frankiecaputo22/
Want to be a guest? https://form.jotform.com/222415937902154
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!
Sep 19, 2022
Sep 19, 2022
1 hr 3 min
In episode 22 of the Dancing Eyes Podcast, Chris introduces me to a lot of interesting ideas including new philosophies, how changing the color of our environment can affect our eyes, and how nystagmus affects the way he thinks. He also explains to me some of the things that he has learned from vision therapy including how breathing can affect the movement of our eyes, the usage of prisms, and eye exercises.
TIMESTAMPS
0:00 Intro/ American Nystagmus Network
1:40 Episode begins.
3:35 What gravitated you towards a degree in philosophy? Why do people treat us differently because of our eyes?
5:15 How has nystagmus made you more of a thinker?
7:35 Painting and mindful breathing helps Chris calm his eyes.
9:00 Vision therapy as a way to treat nystagmus. Looking hard vs looking soft.
13:45 Helping our eyes by adjusting the lighting in our environment.
17:50 How can we get less self conscious about our eyes?
20:55 Antifragility
23:25 How is nystagmus an “Invisible disorder”? Getting a job with nystagmus.
29:20 My experience with having lawyers on the podcast
32:00 Nystagmus in comparison to other disorders.
33:30 The benefit of laughing at ourselves.
37:50 PARENTS listen to this.
41:10 Chris was a Ukrainian dancer for 15 years. What kind of effects does dancing have on our eyes?
44:50 Using prisms to treat double vision and nystagmus. More vision therapy talk.
53:40 Syntonic light therapy
57:50 Closing words
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.
Visit them at https://nystagmus.org/new/
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!
Sep 5, 2022
Sep 5, 2022
1 hr 18 min
Through documenting his journeys walking the full length of New Zealand and cycling the border of Tasmania, Mikey has raised thousands of dollars for nystagmus research. In episode 21 of the Dancing Eyes Podcast, Mikey, the creator of Walk for Wiggly Eyes joins me to talk all about it.
Walk For Wiggly Eyes Links
Instagram - https://www.instagram.com/walk_for_wiggly_eyes/
Youtube - https://www.youtube.com/channel/UC1SMD02-pbkHDUAtSrIzw4w/videos
Facebook - https://www.facebook.com/watch/WalkforWigglyEyes/
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. Visit them at https://nystagmus.org/new/
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!
Aug 15, 2022
Aug 15, 2022
58 min
Chad was born with Congenital Nystagmus and also happens to be a great skateboarder. In episode 20 of the Dancing Eyes Podcast, we discuss stand up comedy, tattoos, having a twin with nystagmus, Chad's experience with skateboarding and a lot more!
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. Visit them at https://nystagmus.org/new/
Chad's Instagram: https://www.instagram.com/chaddisfaction/
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!
Aug 1, 2022
Aug 1, 2022
36 min
In episode 19 of the Dancing Eyes Podcast, Maki joins me to discuss their experience living with nystagmus.
This episode includes topics such as Maki's experience with their null point corrective surgery, music, school, contact lenses and a lot more!
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.
Visit them at https://nystagmus.org/new/
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!
Aug 1, 2022
Aug 1, 2022
13 min
Today we celebrate the 1 year anniversary of the Dancing Eyes Podcast!
Thank you to everyone who has joined me on the show and thank you to anyone who has ever listened to an episode!
This episode is a compilation of some of my favorite moments in the podcast. (I have somehow lost the footage from episode #3 and unfortunately couldn't use anything from there).
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. Visit them at https://nystagmus.org/new/
Jul 4, 2022
Jul 4, 2022
52 min
Chris is a sports broadcaster, a professor and a father. In episode 17 of The Dancing Eyes Podcast, we discuss his career in broadcasting and a lot more!
Timestamps for conversations are available below.
TIMESTAMPS
0:00 Intro/ American Nystagmus Network
1:08 Chris’s career in sports broadcasting
15:00 Sports talk
30:30 How does your nystagmus affect your career/ transportation?
37:00 How did nystagmus affect your childhood/ how did you find out about it?
46:15 Chris played football in high school without glasses/ other sports he played.
49:30 Calming down our eyes/ advice on dealing with nystagmus
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.
Visit them at https://nystagmus.org/new/ 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!
Jun 20, 2022
Jun 20, 2022
1 hr 14 min
In episode 16 of The Dancing Eyes Podcast, Nate joins me to discuss how having nystagmus affects fatherhood. We also talk about finding meaning in life, as well as coping with our nystagmus and many other topics.
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.
Visit them at https://nystagmus.org/new/
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!