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
This was a great episode. I am on the board of ANN. You encouraged me to keep up my campaign to raise nystagmus awareness.I am 68 years old and can related to the conversations. You put such a positive spin on having nystagmus. The episode was very encouraging. Keep up the good work😀
Thank you Rosalyn! It is nice to meet you. I'm glad that the podcast has encouraged you to keep raising awareness. Unfortunately it is extremely rare to find anyone who actually knows about nystagmus, so raising awareness is definitely appreciated. I think it is common for people with nystagmus to feel lonely and unheard because of that reason and I figured that a podcast would be a really good way to help resolve that problem. I'm very glad to see that it is making a difference. 😀 Thank you for the comment! Comments like these are also very encouraging for me
I found my people! I’ve never met anyone else with nystagmus or come across a community. No one I know understands what it’s like and how much it impacts my life. I never knew I had nystagmus until I was in my late teens and asked my GP. My family never told me. I didn’t get the support I needed at school as a result and didn’t do that great in school. Does anyone else think that their nystagmus makes them more easily influenced? I once did hypnotherapy and was told that the fact that my eyes automatically move side to side means that I’m more suggestible. It makes so much sense for me because I find that I’ve always been easily influenced by the people around me.
I'm glad that you found the podcast D K! Funny enough I have been considering doing hypnotherapy and I was more under the idea that it wouldn't work for me because of the movements of my eyes, not the other way around. How did the hypnotherapy go? I'm very interested to hear more about it.
Thank you for sharing your experiences! It's great to hear about how nystagmus has shaped your lives, and some of the challenges you've experienced but also the positives that have come from it. It's fantastic that you can share your stories far and wide among the community and beyond! :)
Thanks Frankie & Cameron for sharing your experiences living with Nystagmus. It was interesting to learn how this condition affects you both & the challenges you work through. Thanks again for an informative podcast. 😊😊
Hello, I'm sorry about the late response. I'm glad that you have enjoyed the podcasts! It has also been a very difficult issue for me and my life. I'm very fortunate to have gotten the opportunity to meet everyone that I met through the podcast. The whole experience really helped me not feel so alone :)
Hey man, I like when you mentioned that you just wave to everyone, just to be sure you don’t offend anybody. I do just the opposite, especially if they’re trying to get my attention from their car. I know I am not going to know who the hell it is, so I just pretend not to hear them. I’m sure some people just think I’m a rude bastard, but what are you gonna do? One time some friends told me they were coming to pick me up. So when a car pulled up, I just jumped in, and it wasn’t them. Good thing that was a long time ago. Now I’d probably get shot. Another great episode.
Yeah man the car thing has always kinda been a weird one for me. It's funny how through 23 episodes I don't think that that has been a talking point til now. Another thing that I struggle with is passing by people who I know in a work or school environment. I never know if someone is looking at me so I either go one of two ways depending on my mood. I'll either be proactive and approach them or do my best to ignore their existence lol. Btw I have gone up to the wrong car on many occasions. I don't think I have ever actually went into the wrong one but I have definitely opened doors lol.
@@DancingEyesPodcast That’s one of the things that makes what you do so important. There was never a forum that would allow us to share these experiences before. People who don’t know, just don’t know, and probably never will.
@@ricktangora9413 Thanks man yeah that was the main reason for starting it. I was super over only finding medical related stuff when looking for people who I can relate to about my eyes.
Hi Frankie, thanks for the podcast, it would be a great idea to ask all the guests about their visual acuity at the start of each podcast, as you know people with nystagmus have a wide range of VA. Also, I was wondering what is your visual acuity? 20/40?
Hey Ravi, good idea. I will keep it in mind when I film future episodes. I think that it is definitely valuable to know what my guests VA is especially if they drive. I'm don't think hat I would be asking it at the beginning of the episodes though but I would make it available in the timestamps so it is easy to find for the listener. As far as my VA goes, I'm about 20/40 in my right eye and 20/60 in my left last time I checked. I'm actually getting it rechecked on Wednesday so we will see if it is still the same.
@@DancingEyesPodcast My VA is exactly like yours, although my left eye is my better eye. The eye sight requirement for a driver license is much stricter where I am, for an unrestricted driver license, one of your eyes has to be 20/20, if not, you need to have at least 20/32 in both eyes to get a restricted license which allows for only day time driving. I do sometimes drive (I have to even without a license as my city is very car dependent) and my conclusion is as follows: - We can drive safely during day time in a familiar urban environment where the speeds of cars do not exceeds 40, 50 miles. - Driving at night in a familiar urban environment is possible, only if the streets are very well-lit. - We can drive in heavy traffic as well, it takes time, but because the cars are moving slower in a bumper to bumper traffic, as long as you are a good driver in terms of being able to handle your vehicle properly, you should be golden. - It is almost impossible for us to drive on roads between cities or states, extremely unsafe, been on a lot of road trips with friends (I'm the passenger, not the driver on those trips), we simply do not have fast enough reaction time to drive on those roads. If you want to pick up driving again, I do suggest that you have an experienced driver with you for at least the first 50 hours of driving (a family member or a friend), It can be very beneficial for example new drivers tend to focus on only the cars in front of them and that can limit your peripheral vision, which can be extremely dangerous to the uncaring pedestrians specially for us with a limited eye sight. And the question we need to ask ourselves remains the same, should we drive even if we are legally allowed? is risking our life and others worth it? And to anyone with nystagmus, LEARN TO DRIVE even if you are not going to drive on a constant basis, it's an essential life skill that you need to have.
@@Ravi-ip9xb Yeah those restrictions are a lot stricter than where I am. Where do you live? The interesting thing about nystagmus is that I have had a few people on the podcast with worse vision than the both of us and they drive just like any other person would. Highways, interstates, even some of them at night. I think that a lot of it has to do with how much you really want to make the commitment to driving. I think that if I committed more when I tried for the first time then I may very well be driving today. In response to that question that you mentioned at the end of your statement, that really is the single more important question that we can ask ourselves. That is the question that has kept me off the roads. The frustrating part about it is that it is extremely difficult to function in society especially in the United States if you do not drive. There are certain cities where driving is not a necessity and I may very well be going to one of those in the not too distant future if the driving doesn't work out. Ubers are $13 for a 6 minute ride so for me to get a trip to the grocery store it would cost $26 not including tip.
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
This was a great episode. I am on the board of ANN. You encouraged me to keep up my campaign to raise nystagmus awareness.I am 68 years old and can related to the conversations. You put such a positive spin on having nystagmus. The episode was very encouraging. Keep up the good work😀
Thank you Rosalyn! It is nice to meet you.
I'm glad that the podcast has encouraged you to keep raising awareness. Unfortunately it is extremely rare to find anyone who actually knows about nystagmus, so raising awareness is definitely appreciated. I think it is common for people with nystagmus to feel lonely and unheard because of that reason and I figured that a podcast would be a really good way to help resolve that problem. I'm very glad to see that it is making a difference. 😀
Thank you for the comment! Comments like these are also very encouraging for me
I found my people! I’ve never met anyone else with nystagmus or come across a community. No one I know understands what it’s like and how much it impacts my life.
I never knew I had nystagmus until I was in my late teens and asked my GP. My family never told me. I didn’t get the support I needed at school as a result and didn’t do that great in school.
Does anyone else think that their nystagmus makes them more easily influenced? I once did hypnotherapy and was told that the fact that my eyes automatically move side to side means that I’m more suggestible. It makes so much sense for me because I find that I’ve always been easily influenced by the people around me.
I'm glad that you found the podcast D K! Funny enough I have been considering doing hypnotherapy and I was more under the idea that it wouldn't work for me because of the movements of my eyes, not the other way around. How did the hypnotherapy go? I'm very interested to hear more about it.
Thank you for sharing your experiences! It's great to hear about how nystagmus has shaped your lives, and some of the challenges you've experienced but also the positives that have come from it. It's fantastic that you can share your stories far and wide among the community and beyond! :)
Thank you Georgia!
Thanks Frankie & Cameron for sharing your experiences living with Nystagmus. It was interesting to learn how this condition affects you both & the challenges you work through. Thanks again for an informative podcast. 😊😊
It is my pleasure! Thank you for the comment 😀
Excellent intelligent exchange.
Thank you!
It's nice to see other people discussing this! This has been a very difficult issue for me my entire life.
Hello, I'm sorry about the late response. I'm glad that you have enjoyed the podcasts! It has also been a very difficult issue for me and my life. I'm very fortunate to have gotten the opportunity to meet everyone that I met through the podcast. The whole experience really helped me not feel so alone :)
Great episode 😊
Thank you George!
Hey man, I like when you mentioned that you just wave to everyone, just to be sure you don’t offend anybody. I do just the opposite, especially if they’re trying to get my attention from their car. I know I am not going to know who the hell it is, so I just pretend not to hear them. I’m sure some people just think I’m a rude bastard, but what are you gonna do? One time some friends told me they were coming to pick me up. So when a car pulled up, I just jumped in, and it wasn’t them. Good thing that was a long time ago. Now I’d probably get shot. Another great episode.
Yeah man the car thing has always kinda been a weird one for me. It's funny how through 23 episodes I don't think that that has been a talking point til now. Another thing that I struggle with is passing by people who I know in a work or school environment. I never know if someone is looking at me so I either go one of two ways depending on my mood. I'll either be proactive and approach them or do my best to ignore their existence lol. Btw I have gone up to the wrong car on many occasions. I don't think I have ever actually went into the wrong one but I have definitely opened doors lol.
@@DancingEyesPodcast That’s one of the things that makes what you do so important. There was never a forum that would allow us to share these experiences before. People who don’t know, just don’t know, and probably never will.
@@ricktangora9413 Thanks man yeah that was the main reason for starting it. I was super over only finding medical related stuff when looking for people who I can relate to about my eyes.
Awesome episode!!
.
Thank you!
Hi Frankie, thanks for the podcast, it would be a great idea to ask all the guests about their visual acuity at the start of each podcast, as you know people with nystagmus have a wide range of VA.
Also, I was wondering what is your visual acuity? 20/40?
Hey Ravi, good idea. I will keep it in mind when I film future episodes. I think that it is definitely valuable to know what my guests VA is especially if they drive. I'm don't think hat I would be asking it at the beginning of the episodes though but I would make it available in the timestamps so it is easy to find for the listener.
As far as my VA goes, I'm about 20/40 in my right eye and 20/60 in my left last time I checked. I'm actually getting it rechecked on Wednesday so we will see if it is still the same.
@@DancingEyesPodcast My VA is exactly like yours, although my left eye is my better eye.
The eye sight requirement for a driver license is much stricter where I am, for an unrestricted driver license, one of your eyes has to be 20/20, if not, you need to have at least 20/32 in both eyes to get a restricted license which allows for only day time driving.
I do sometimes drive (I have to even without a license as my city is very car dependent) and my conclusion is as follows:
- We can drive safely during day time in a familiar urban environment where the speeds of cars do not exceeds 40, 50 miles.
- Driving at night in a familiar urban environment is possible, only if the streets are very well-lit.
- We can drive in heavy traffic as well, it takes time, but because the cars are moving slower in a bumper to bumper traffic, as long as you are a good driver in terms of being able to handle your vehicle properly, you should be golden.
- It is almost impossible for us to drive on roads between cities or states, extremely unsafe, been on a lot of road trips with friends (I'm the passenger, not the driver on those trips), we simply do not have fast enough reaction time to drive on those roads.
If you want to pick up driving again, I do suggest that you have an experienced driver with you for at least the first 50 hours of driving (a family member or a friend), It can be very beneficial for example new drivers tend to focus on only the cars in front of them and that can limit your peripheral vision, which can be extremely dangerous to the uncaring pedestrians specially for us with a limited eye sight.
And the question we need to ask ourselves remains the same, should we drive even if we are legally allowed? is risking our life and others worth it?
And to anyone with nystagmus, LEARN TO DRIVE even if you are not going to drive on a constant basis, it's an essential life skill that you need to have.
@@Ravi-ip9xb Yeah those restrictions are a lot stricter than where I am. Where do you live?
The interesting thing about nystagmus is that I have had a few people on the podcast with worse vision than the both of us and they drive just like any other person would. Highways, interstates, even some of them at night. I think that a lot of it has to do with how much you really want to make the commitment to driving. I think that if I committed more when I tried for the first time then I may very well be driving today.
In response to that question that you mentioned at the end of your statement, that really is the single more important question that we can ask ourselves. That is the question that has kept me off the roads. The frustrating part about it is that it is extremely difficult to function in society especially in the United States if you do not drive. There are certain cities where driving is not a necessity and I may very well be going to one of those in the not too distant future if the driving doesn't work out. Ubers are $13 for a 6 minute ride so for me to get a trip to the grocery store it would cost $26 not including tip.
My eyes shake involuntary when I’m trying to read a number off a fax machine or sometimes when reading a book
Same here 😆
Me pradeep paudyal from 🇳🇵 and diagnosis with congenital nystagmus and i want to be your guest 🙂
First!
Sup Mitchell!