Hey Mel. I have rod cone dystrophy too, and I can definitely relate to a lot of what you're saying. I'm so glad there is someone who understands exactly what I go through. ♡
Hi Mel. I can definitely relate to the frustrations of not being sure whether not something you’re seeing is actually what you think it is. It’s a running joke in the family that whenever my mom move the furniture or a kitchen appliance, I don’t realize it until either I walk into it or image to use it and it’s not there because sometimes I think It is still there when actually it’s in a different spot.
Oh. Wow. I can understand the fake pole part. Sometimes I can't trust what my eyes see. I was told I have cone rod dystrophy. RP. Nystagmus. So colors are hard to tell. Things and places can be really bright. My eyes shake on their own and can only read and type really close with my left eye. But I can still see most thing everyday. Still just really hard. Glasses help with the blur but thats about it. Sometimes I forget I'm not wearing them because I'm so used to going with or without them. But I can walk around my place or Familiar places. I'm super blind but sometimes people don't notice right away
A lot of those conditions of what I have as well. I hope that you continue to get use out of your vision, remember though that when you do begin to have difficulty with seeing things, get the support and help you need before it is too late. Thank you for watching the video and I hope that you stick around for more blindness content.
The Mastermans the visual memories can be really annoying especially now when I know it's not really there but my mind says it is. Some of the poles at school liked jumping out at me sometimes lol.
The Mastermans I cannot speak for anyone else. I can only speak for myself but in my opinion, visual memory is a good and bad thing. Let me explain. It's great for when I'm in a neighborhood that I have seen before when I had better vision. Unfortunately, it is not helpful when I am in an area that I think I know well but it turns out I don't know it as well as I thought. I can be turning a corner in a whole way but might be off by a few centimeters and walk straight into a wall. Those things can jump out at you, you know XD. I'm sorry if this was not helpful or if I made things more confusing
Hi Mel, so sorry to hear about your Cone Rod Dystrophy and the difficulties in your every day life that come with it. I too have Cone Dystrophy and can tell that it is getting worse every day! It’s getting to the point that I can’t see to read anymore and was wondering which iOS apps you use to help you...Thanks, Mike
Hi Mike, thanks for your comment. Thereare a lot of aplications on iPhone you can use to help you. There are several accessability settings you can explore to make your phone more accessible to you as you go through your journey, from having larger print to having white text on a black back-ground and everything in between. Then you get into more complicated accessability settings such as VoiceOver, which will read everything on the screen, including interpreting pictures and helping you serfe the net without straining your eyes. I am an assistive technology trainer in my day-job. If you like I can assist you, send me an email at: sunassistivetech@gmail.com if you'd like my assistence and we can go from there.
Hello. I am totally blind and completely understand you on how voice over works I’m not too sure if you’re aware Mel that if you’ve got an Apple Watch you can go to the camera remote and you can access your iPhone camera using the watch so if you turn off VoiceOver on iPhone but you access the camera with your watch by pushing record and then push record again with your watch you will not get the recording Come through on your phone
@@melStephens1994 I would like to share my horse videos with you as well as a totally blind person. I don’t own horses but I’m currently doing horse therapy at the moment and I’ve created videos every week.
My brother is suffering from cone dystrophy. He's 10 years old. And doctors are saying that he would lose his vision shortly. Please tell some suggestions for post corn dystrophy. As learning of typing on blind computers and others. Please tell the suggestions. Please please
Hello, thank you for reaching out with your questions and concurnes regarding your brother. I feel this is not a situation to discuss publically so please email me at: mickmate94@gmail.com to get some advice and suggestions. I also will be doing a video soon regarding what to do if loosing sight, so keep an eye out for that one. Once again, thank you for reaching out and I look forward to your email.
There may be some people who drive in the very early stages of having Rod-Cone Dystrophy. However, their vision will reduce to a point that they become legally blind and eventually competely blind. I do not see anything now so it is not possible for me to drive a car, I drive a guide dog instead :)
How fast did you loose all that sight? That sounds so scary, do you videos about how you cope with it? Thank you for sharing your story and looking at my channel to, I have subscribed :) take care :) x
I think it took about 10 years, though I can't really be sure. It happened so gradually that I can't really put my finger on a date that I started to lose it all, and I can't safely say when I realized that it had all gone. The best estimation that I can make though is about ten years as I said. I think I started losing it when I was about 13 or 14, that's when I started needing a cane sometimes. I then would say that I was down to only light perception, which I have now, about twelve months ago, maybe longer than that. It's just happened so slowly that I haven't really been able to keep a track of it, not that I really mind. As for your question regarding if I talk about some of the struggles that I face living with blindness, I don't really talk about my vision loss in a negative way, or feel negative about it at all. Blindness is something that I have had a part of my whole life, and I am used to blindness so I don't see it as being a handicap in any form. However, if you want to be involved in the more personal side of my story go and check out my other channel, which is linked at the bottom of this comment. As I said, that is where you will find a more personal angle to my story, including vlogs. This channel is mostly now for information regarding blindness and that sort of less specific and/or personal stuff. Thank you for checking my channel out, and welcome to the family.
Hey Mel. I have rod cone dystrophy too, and I can definitely relate to a lot of what you're saying. I'm so glad there is someone who understands exactly what I go through. ♡
It’s good having someone who can relate to you. I hope I.can help you see Hope with your vision
Hi Mel. I can definitely relate to the frustrations of not being sure whether not something you’re seeing is actually what you think it is. It’s a running joke in the family that whenever my mom move the furniture or a kitchen appliance, I don’t realize it until either I walk into it or image to use it and it’s not there because sometimes I think It is still there when actually it’s in a different spot.
I’m so glad I found your channel! I am blind due to ROP stage 4, which is Retinopathy of prematurity and Glaucoma.
Hi there, welcome to the channel. I hope you enjoy my videos and content
Oh. Wow. I can understand the fake pole part. Sometimes I can't trust what my eyes see. I was told I have cone rod dystrophy. RP. Nystagmus. So colors are hard to tell. Things and places can be really bright. My eyes shake on their own and can only read and type really close with my left eye. But I can still see most thing everyday. Still just really hard. Glasses help with the blur but thats about it. Sometimes I forget I'm not wearing them because I'm so used to going with or without them. But I can walk around my place or Familiar places. I'm super blind but sometimes people don't notice right away
A lot of those conditions of what I have as well. I hope that you continue to get use out of your vision, remember though that when you do begin to have difficulty with seeing things, get the support and help you need before it is too late. Thank you for watching the video and I hope that you stick around for more blindness content.
I really love your video. What is your current status with rod cone? I hope your journey is well and you’re okay.
This is so informative
The visual memory is a tricky thing by the sound of it and sorry you ran into a pole that’s no good, thank you for sharing mel
The Mastermans the visual memories can be really annoying especially now when I know it's not really there but my mind says it is. Some of the poles at school liked jumping out at me sometimes lol.
The Mastermans I cannot speak for anyone else. I can only speak for myself but in my opinion, visual memory is a good and bad thing. Let me explain. It's great for when I'm in a neighborhood that I have seen before when I had better vision. Unfortunately, it is not helpful when I am in an area that I think I know well but it turns out I don't know it as well as I thought. I can be turning a corner in a whole way but might be off by a few centimeters and walk straight into a wall. Those things can jump out at you, you know XD. I'm sorry if this was not helpful or if I made things more confusing
Hi live you channel
Hi Mel, so sorry to hear about your Cone Rod Dystrophy and the difficulties in your every day life that come with it. I too have Cone Dystrophy and can tell that it is getting worse every day! It’s getting to the point that I can’t see to read anymore and was wondering which iOS apps you use to help you...Thanks, Mike
Hi Mike, thanks for your comment. Thereare a lot of aplications on iPhone you can use to help you. There are several accessability settings you can explore to make your phone more accessible to you as you go through your journey, from having larger print to having white text on a black back-ground and everything in between. Then you get into more complicated accessability settings such as VoiceOver, which will read everything on the screen, including interpreting pictures and helping you serfe the net without straining your eyes. I am an assistive technology trainer in my day-job. If you like I can assist you, send me an email at: sunassistivetech@gmail.com if you'd like my assistence and we can go from there.
Hello
My wise is to talk to the person who is having the same problem like me.
Hello.
I am totally blind and completely understand you on how voice over works
I’m not too sure if you’re aware Mel that if you’ve got an Apple Watch you can go to the camera remote and you can access your iPhone camera using the watch so if you turn off VoiceOver on iPhone but you access the camera with your watch by pushing record and then push record again with your watch you will not get the recording Come through on your phone
Hi Philip, yes, I have figured this trick out since I did this video, this video is several years old now.
@@melStephens1994 I would like to share my horse videos with you as well as a totally blind person. I don’t own horses but I’m currently doing horse therapy at the moment and I’ve created videos every week.
My brother is suffering from cone dystrophy. He's 10 years old. And doctors are saying that he would lose his vision shortly. Please tell some suggestions for post corn dystrophy. As learning of typing on blind computers and others. Please tell the suggestions. Please please
Hello, thank you for reaching out with your questions and concurnes regarding your brother. I feel this is not a situation to discuss publically so please email me at: mickmate94@gmail.com to get some advice and suggestions. I also will be doing a video soon regarding what to do if loosing sight, so keep an eye out for that one. Once again, thank you for reaching out and I look forward to your email.
@@melStephens1994 ok ma'am ... Thank you a lot
Can you drive with your eye condition?
There may be some people who drive in the very early stages of having Rod-Cone Dystrophy. However, their vision will reduce to a point that they become legally blind and eventually competely blind. I do not see anything now so it is not possible for me to drive a car, I drive a guide dog instead :)
How fast did you loose all that sight? That sounds so scary, do you videos about how you cope with it? Thank you for sharing your story and looking at my channel to, I have subscribed :) take care :) x
I think it took about 10 years, though I can't really be sure. It happened so gradually that I can't really put my finger on a date that I started to lose it all, and I can't safely say when I realized that it had all gone. The best estimation that I can make though is about ten years as I said. I think I started losing it when I was about 13 or 14, that's when I started needing a cane sometimes. I then would say that I was down to only light perception, which I have now, about twelve months ago, maybe longer than that. It's just happened so slowly that I haven't really been able to keep a track of it, not that I really mind. As for your question regarding if I talk about some of the struggles that I face living with blindness, I don't really talk about my vision loss in a negative way, or feel negative about it at all. Blindness is something that I have had a part of my whole life, and I am used to blindness so I don't see it as being a handicap in any form. However, if you want to be involved in the more personal side of my story go and check out my other channel, which is linked at the bottom of this comment. As I said, that is where you will find a more personal angle to my story, including vlogs. This channel is mostly now for information regarding blindness and that sort of less specific and/or personal stuff. Thank you for checking my channel out, and welcome to the family.
Sorry I had to post in a separate comment, I was having technical difficulties. czcams.com/channels/O31UZnBf8d8d-3Sdk9nqEg.html