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
How Can Vision Therapy Help Nystagmus? Dancing Eyes Podcast #25 - Dr Julie Steinhauer
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!
19 Oct 2022
Finding Love With Nystagmus | Becky’s Blurred Perspective | Dancing Eyes Podcast #24 - Becky
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!
3 Oct 2022
How Nystagmus Affects Personality | Psychologist With Nystagmus | Dancing Eyes Podcast #23 - Cameron
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!
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