My vision has decreased so fast over the past year.. One eye is completely useless and I cover it with a patch so the remaining eye can focus better, but now the "good" eye is half blind. It's scary, because with my lifestyle, all I do is sit at the computer. When that's taken away, I don't know what's left. I guess I'll get into audio books. The best way to describe how I see things now, is to imagine yourself walking down a path at night. Not completely dark, you can make out what's around you, but not in much detail. That's my vision, only in a daylight version. I can't see detail. Not because it's blurry, it's just shimmery I guess. Thank you for the video, it's not as scary to know I'm not going through it alone.
Wow, that's a lot in a year. I bet that is scary. Reading a computer screen has gotten a lot harder for me lately too. Using only one eye must be even worse!
Hi Bryan, I’ve been having shocking things happening in the grocery store, running into people, etc. I hope you’re still not driving. I almost hit a pedestrian 10 years ago so I stopped driving. Scary. My eye disease is very close to what RP is. It’s a rare disease. Thank you for your video.
Hi Andrea! I understand what you mean at the grocery store! It's hard to keep track of all the people! I stopped driving about a year ago. I used to run short errands during the day, but I quit doing that too. I can't risk hitting something or someone. I haven't sold my car yet, but I will soon. It just sits there. Kinda sad because I'm a car guy. Oh well. Better safe than sorry! I don't want to make my problem someone else's!
I’m going blind. Mine is curable but no insurance, no wealth, so I’m stuck until April when I retire. Problem is, I’ve had this for over 10 yrs. I’ve tried EVERYTHING , ever organization that I looked online and councilors and drs gave me referrals but nothing. It’s like there’s nothing out there for me. I’m literally blind in one eye and can’t see well out of the other. So I’ve been looking for ways to deal with this. I’m closterphobic and being blind will trigger that. I do talk to a councilor but all she can do is help me with referrals. So I’ve been looking on you tube for videos of how ppl deal with this. Thanks for posting this
Hey Bryan, thanks for this video. I don’t have RP, but I have something called optic disc drusen, which basically means my body can’t get rid of some proteins and they end up growing on/damaging my optic nerve. I’m currently still driving, working etc, but I feel my vision is worsening. Videos like this are helpful to me because they remind me that I’m not alone. You say a lot that things are “tricky” and I couldn’t agree more honestly. I am wondering when things are going to change for me all the time. You seem like a really cool guy, I hope things are going well for you.
Hi Emily! I wonder when things will change big for me too. Kinda makes be worry about "The day I go blind". But maybe that's not really a thing? I think it will just happen little by little. I think about the way I used to do some things and I've already made some big changes without really noticing it. Driving habits and marking things with bright tape so I can find them, etc.. I bet we should both hope for a slow decline rather than a "BAM! You can't see!" event!
Hi Brian, I too have RP.. U gave abiyt 5 degrees of vision left. I have been where you are atand can say that it sucks. I am 50 years old . I found out that I had RP at about age 13. At that time I had about 20 degrees left. Do all the things you can while you have half of your vision. See the things you always wanted to see. I have good days and bad days but we just have to keep pluggin away.
I agree, not many videos out there about those of us still transitioning/losing our vision. Much of what you described, I also experienced. Thinking back, It dawns on me that I was using my peripheral vision to drive. I can't nowadays but it is a bit scary to know I was doing that. So many of us slowly losing sight end up not realizing it until we encounter the missed waves and the door bumps; and yet it doesn't click at first. Thank you for the video.
Hi Bryan. Thank you so much for sharing your story. My name is Sebastian, I'm 35, and I was diagnosed with RP when I was 25. Even though I can still lead a pretty normal life, I have lost almost my entire peripheral sight, and it's getting harder and harder to deal with day to day activities. I heard there's actually 1 type of RP (I think it is RPE 65) which is somehow treatable, In order to find out what kind of RP you've got, I believe you need to take a DNA test that usually costs around 1000 dollars. Feel free to contact me or just reply to this message sharing your current status. I guess that, beyond the obvious difficulties going blind implies, the most complicated thing is learning to deal with from a psychological perspective, and that's the battle I am frighting right now. Once again, thank you very much for sharing your story. Wish you all the best! Take care.
Hey Sebastian, thanks for the comment. I need to get the genetic testing done so I know exactly what I'm dealing with. I've just recently got health insurance again, so I'll get that done if I can. Yes, I agree that the mental challenge is harder to deal with than the physical part! I can adapt the way I do things but trying to quiet my mind is not as easy.
I'm losing my vision too and its really hard for me given I'm young and don't have a lot of work experience. It's so messed up because I want to see the world first hand but no jobs will take me. Any advice? P.s its great that someone with depleting vision is making videos about their experience. It shows that I'm not alone. Keep it uo.
I'm a very organized person as well. I've found that getting a traditional job can be tricky with sight limitations. I work for myself and am able to work around my vision issues. Working for yourself might be a thing for you! Maybe offer personal organization help online? There are a lot of people out there who have no idea how to clean up and put stuff away! Offer storage solution advice? I'm just making stuff up here, but think outside the box! I have a blind friend that went to massage school and has her own massage business. She works from home and has customers every day, and she can't see at all!
I have rod cone dstrophy, been losing my vision about 9 years. It is close to what you ahve. It is really hard to slowly lose your vision. Been trying to cope with it now. You just lose something a piece at a time, and when you notice it, it resets your grieving process all over again. Hard to explain to people that dont have to deal with it.
Hi Walter. Yeah, it sucks to get reminded that you're going blind all the time. Kinda a punch in the guts when it happens too. I try to think about the things I can still do and see when that happens. Flip the script!
i was told yesterday that i have RP It made me feel a little bit sad i m 26 years old i still play sport but soon i might stop playing soccer ⚽️ and still work and drink sometime ig imma change my lifestyle somethin i can say about RP if ur vision i still ok try to not expose ur eyes to light
Hey, my name is Floris 23 and going through the same thing right now. I got rp to and feel pretty lonely at home some days. Idk if your even checken this but thank you for sharing would be nice if there wete more of us sharing there stories. Thank you
Hey Floris, nice to meet you! It can be tough when other people don't understand what you're going through. I think it's extra tricky for people like us, because we don't look like we have a disability. My dad found that people were more understanding once he started using his cane. The cane let everyone know he couldn't see and they would respond accordingly. He once told me the cane was more for other people than it was for him!
@@halfblindbryan thank you for responding so quick :) yeah ive had friend who told me the same thing. She also has rp. I find it hard to take that step im pretty much still in the acceptance fase and adaptibility is hard therefore. I try to stay 'normal' as long as i can but i slowly find the differences between me and my peers. I find it hard to take steps for my disability cuz i have more things that make it hard for me. I realy appreciate it that youve made the video and it makes me feel a little bit less lonely with the struggles :)
I am also in the process of losing my vision mine is due to bad diabetes management I got diagnosed when I’m 15 and I’m 31 now I was diagnosed legally blind about four years ago can’t see too much out of my left eye it’s like looking through a foggy window and now my right eye is starting to go out I’ve experienced exactly Exactly what you said about bumping into people and not seeing what is right in front of you it’s definitely a challenge I’m going to have to start looking for ways to do stuff once I’m fully in the fog
Nice video, I'm 24 with 10ish degrees left. So dono if there's much relation between transitioning. BUT I don't ever use my white cane or haven't "let it" completely take my mobility or independence. Haha -____- I can vouch that you will most definitely turn into a meat magnet to neon yellow no slip signs, other wondering humans, and the occasional wall. Haha anyway you sound strong man so tho its going to be a freakish reality trip I have faith you'll pull threw!
I don't have redness Pigmentosa but I know it but it is I have wet macular degeneration in both my eyes with Android streaks tomorrow I turn 56 years old I don't feel like I'm handling it very well I see less and less right in the center vision of my eyes everyday it's getting more and more difficult trying to find a reason to want to survive I see my retina specialist tomorrow on my birthday I planned it that way because I want to know where I am if it's 6 years old there's more to say but I don't know where to start but I like your story and I subscribed
Hang in there William. It can be scary and depressing for sure, but there are lots of different things we can do to stay active and productive! I try to focus on the things I can still do well, and look for ways to work around the rest. I've had to let other people do most of my driving and help me around in the dark. I don't like it, but learning to let other help is big!
Dude, Where DO we go to talk to people? I also have known about my rp since I was 12 and am now finally seeing a doctor at the age of 27. I found out a few days ago that I am legally not supposed to be driving. One thing that i find hard about the rp "experience" is sometimes when i'm trying to describe my impairment to someone they try to identify with me, " I can't see in the dark either", " I'm super clumsy too" ... sorry, I don't think its the same. lol
Hi Allison! I have the same experience when I tell people I don't see well. "Oh, I'm legally blind without my glasses!" It doesn't bother me because no know they don't understand, but it still feels a bit isolating. I have to renew my driver's license in a month and I don't know if I'll pass the test. Not being able to drive is going to be a big change ...
Nothing like walking into a room and asking another person where someone is when they're also within your shot. Personally, I'm scared and struggling psychologically about sometimes
Yeah, that's not cool. I lose track of quiet people too! Sometimes my girlfriend will leave the room and I'll keep talking to her because I didn't see that she's not there anymore! This can be very hard on your mind. It gets me some days too. I just try to remember that there are a lot of ways to live and enjoy life even if you can't see! Do what you can do today and try not to worry about what's coming. You'll handle that when it comes too!
It's also frustrating when other people don't seem to understand what's going on. I have found people to be on two extreme points. They either treat you like you're completely blind or have 20/20 vision...
Yeah, that's kinda true. My dad had this disease too. He told me that the cane is for other people too. When people see the cane they understand you can't see and give you some space. I don't know if you use a cane or not yet. Ive been getting started with cane training. I don't NEED it yet, but it's good to learn early!
Hi Bryan, I have RP also can’t drive at night and going out at night I need help walking around, stairs I try to avoid still wear glasses at this stage.
Its been 3 years since i got this curse. It just make you think about the times you still have a perfect vision and you just want to see how people see normally i got very depress i dontk know what to do anymore its either ill wait until i go blind which is impossible for me to kill myself
I'm sorry to hear that Ryle it can be hard to deal with knowing you'll never see clearly again. I've struggled with that too, knowing I'll never see my grandkids, or what my children look like as adults. It is sad, but you don't have to let it beat you. You are more than just bad eyes! Look for other ways to make yourself happy. Find things you can still do and work with that. My father had this same disease and I watched him go blind since I was a kid. Eventually he took his own life a few years ago. Losing my father was much more painful than going blind. He was my guide, my teacher, and friend, and I miss him so much. Suicide is not the answer, it just takes your pain and gives it to the ones you love to bear. This is sad, it is a loss, but don't let it beat you. There are so many new things to help being developed, even a cure that is starting to work! Don't focus on the bad part Ryle or that's all you'll find. Spend your energy on things that do bring you happiness and go forward with that! I'm here to talk with you if that would help. Hang in there!
Thank you! I'm still doing ok! It's getting worse, but I can still get around ok. I run into things a lot. I quit driving a while back, that was a good idea.
Is there something that's coming for a cure? That's going to help you because I'm in the same boat. I have wet macular degeneration along with glaucoma. And I am slow lose my vision but I'm looking into stem cells and other things that. Can help? My. Vision are you doing the same
The stem cell treatments are very promising! There is also work being done with fish eyes. Fish can regenerate new eye cells if they are damaged. They are trying to find a way to introduce that to human eyes!
Hey Bryan, I too have RP but anyways do you have any other socials? I’d really like to chat with someone who having/had similar experiences as I do. Thank you
Thank you for sharing this
I’m losing my sight with glaucoma. Thank you for this.
My vision has decreased so fast over the past year.. One eye is completely useless and I cover it with a patch so the remaining eye can focus better, but now the "good" eye is half blind. It's scary, because with my lifestyle, all I do is sit at the computer. When that's taken away, I don't know what's left. I guess I'll get into audio books.
The best way to describe how I see things now, is to imagine yourself walking down a path at night. Not completely dark, you can make out what's around you, but not in much detail. That's my vision, only in a daylight version. I can't see detail. Not because it's blurry, it's just shimmery I guess. Thank you for the video, it's not as scary to know I'm not going through it alone.
Wow, that's a lot in a year. I bet that is scary. Reading a computer screen has gotten a lot harder for me lately too. Using only one eye must be even worse!
Hi Bryan, I’ve been having shocking things happening in the grocery store, running into people, etc. I hope you’re still not driving. I almost hit a pedestrian 10 years ago so I stopped driving. Scary. My eye disease is very close to what RP is. It’s a rare disease. Thank you for your video.
Hi Andrea! I understand what you mean at the grocery store! It's hard to keep track of all the people!
I stopped driving about a year ago. I used to run short errands during the day, but I quit doing that too. I can't risk hitting something or someone. I haven't sold my car yet, but I will soon. It just sits there. Kinda sad because I'm a car guy. Oh well. Better safe than sorry! I don't want to make my problem someone else's!
I’m going blind. Mine is curable but no insurance, no wealth, so I’m stuck until April when I retire. Problem is, I’ve had this for over 10 yrs. I’ve tried EVERYTHING , ever organization that I looked online and councilors and drs gave me referrals but nothing. It’s like there’s nothing out there for me. I’m literally blind in one eye and can’t see well out of the other. So I’ve been looking for ways to deal with this. I’m closterphobic and being blind will trigger that. I do talk to a councilor but all she can do is help me with referrals. So I’ve been looking on you tube for videos of how ppl deal with this. Thanks for posting this
Hi Luanne! Sounds like you're in a bind! What is the condition you have?
Hey Bryan, thanks for this video. I don’t have RP, but I have something called optic disc drusen, which basically means my body can’t get rid of some proteins and they end up growing on/damaging my optic nerve. I’m currently still driving, working etc, but I feel my vision is worsening. Videos like this are helpful to me because they remind me that I’m not alone. You say a lot that things are “tricky” and I couldn’t agree more honestly. I am wondering when things are going to change for me all the time.
You seem like a really cool guy, I hope things are going well for you.
Hi Emily! I wonder when things will change big for me too. Kinda makes be worry about "The day I go blind". But maybe that's not really a thing? I think it will just happen little by little. I think about the way I used to do some things and I've already made some big changes without really noticing it. Driving habits and marking things with bright tape so I can find them, etc.. I bet we should both hope for a slow decline rather than a "BAM! You can't see!" event!
Hi Brian, I too have RP.. U gave abiyt 5 degrees of vision left. I have been where you are atand can say that it sucks. I am 50 years old . I found out that I had RP at about age 13. At that time I had about 20 degrees left. Do all the things you can while you have half of your vision. See the things you always wanted to see. I have good days and bad days but we just have to keep pluggin away.
Thanks, Glenn. It can definitely be difficult at times, but life goes on! I'm glad I've had as much sight as I've had for as long as I've had it!
Thankks for making the video
I agree, not many videos out there about those of us still transitioning/losing our vision. Much of what you described, I also experienced. Thinking back, It dawns on me that I was using my peripheral vision to drive. I can't nowadays but it is a bit scary to know I was doing that. So many of us slowly losing sight end up not realizing it until we encounter the missed waves and the door bumps; and yet it doesn't click at first. Thank you for the video.
Hi Bryan. Thank you so much for sharing your story. My name is Sebastian, I'm 35, and I was diagnosed with RP when I was 25. Even though I can still lead a pretty normal life, I have lost almost my entire peripheral sight, and it's getting harder and harder to deal with day to day activities.
I heard there's actually 1 type of RP (I think it is RPE 65) which is somehow treatable, In order to find out what kind of RP you've got, I believe you need to take a DNA test that usually costs around 1000 dollars.
Feel free to contact me or just reply to this message sharing your current status.
I guess that, beyond the obvious difficulties going blind implies, the most complicated thing is learning to deal with from a psychological perspective, and that's the battle I am frighting right now.
Once again, thank you very much for sharing your story.
Wish you all the best!
Take care.
Hey Sebastian, thanks for the comment. I need to get the genetic testing done so I know exactly what I'm dealing with. I've just recently got health insurance again, so I'll get that done if I can.
Yes, I agree that the mental challenge is harder to deal with than the physical part! I can adapt the way I do things but trying to quiet my mind is not as easy.
I'm still very high functioning, but I may lose my driver's license soon. That will change things.
@@halfblindbryan better to give it up for the safety of others. I had to.
Hi Bryan, love this video. Thank you. Love your positive attude.
I'm losing my vision too and its really hard for me given I'm young and don't have a lot of work experience. It's so messed up because I want to see the world first hand but no jobs will take me. Any advice? P.s its great that someone with depleting vision is making videos about their experience. It shows that I'm not alone. Keep it uo.
Hi Ari! Finding work can be real tough with sight limitations. How old are you and what kinds of skills do you have?
@@halfblindbryan I'm 23 and am very organized. I also like to do things correctly so I'm really precise.
I'm a very organized person as well. I've found that getting a traditional job can be tricky with sight limitations. I work for myself and am able to work around my vision issues. Working for yourself might be a thing for you! Maybe offer personal organization help online? There are a lot of people out there who have no idea how to clean up and put stuff away! Offer storage solution advice? I'm just making stuff up here, but think outside the box! I have a blind friend that went to massage school and has her own massage business. She works from home and has customers every day, and she can't see at all!
@@halfblindbryan Thank you for the advice!
I have rod cone dstrophy, been losing my vision about 9 years. It is close to what you ahve. It is really hard to slowly lose your vision. Been trying to cope with it now. You just lose something a piece at a time, and when you notice it, it resets your grieving process all over again. Hard to explain to people that dont have to deal with it.
Hi Walter. Yeah, it sucks to get reminded that you're going blind all the time. Kinda a punch in the guts when it happens too. I try to think about the things I can still do and see when that happens. Flip the script!
Thanks for the video bud. Also in the process of losing my vision. Feels like ticking time bomb.
Doing my best like you to adapt 👍🏻
Any updates Brian?
I think I'll do another video since things have changed a bit for me. What is the problem with your eyes?
i was told yesterday that i have RP
It made me feel a little bit sad i m 26 years old i still play sport but soon i might stop playing soccer ⚽️ and still work
and drink sometime ig imma change my lifestyle somethin i can say about RP if ur vision i still ok try to not expose ur eyes to light
Hey Felix. Yeah it's a bit to think about when you find out. Keep playing as long as you can!
Hey, my name is Floris 23 and going through the same thing right now. I got rp to and feel pretty lonely at home some days. Idk if your even checken this but thank you for sharing would be nice if there wete more of us sharing there stories. Thank you
Hey Floris, nice to meet you! It can be tough when other people don't understand what you're going through. I think it's extra tricky for people like us, because we don't look like we have a disability. My dad found that people were more understanding once he started using his cane. The cane let everyone know he couldn't see and they would respond accordingly. He once told me the cane was more for other people than it was for him!
@@halfblindbryan thank you for responding so quick :) yeah ive had friend who told me the same thing. She also has rp. I find it hard to take that step im pretty much still in the acceptance fase and adaptibility is hard therefore. I try to stay 'normal' as long as i can but i slowly find the differences between me and my peers. I find it hard to take steps for my disability cuz i have more things that make it hard for me. I realy appreciate it that youve made the video and it makes me feel a little bit less lonely with the struggles :)
I am also slowly going blind (with glaucoma). What an adventure . . . once your accept it as your new normal.
I am also in the process of losing my vision mine is due to bad diabetes management I got diagnosed when I’m 15 and I’m 31 now I was diagnosed legally blind about four years ago can’t see too much out of my left eye it’s like looking through a foggy window and now my right eye is starting to go out I’ve experienced exactly Exactly what you said about bumping into people and not seeing what is right in front of you it’s definitely a challenge I’m going to have to start looking for ways to do stuff once I’m fully in the fog
I know what you mean about the fog! I had cataracts pretty bad too, but had them removed about two years ago. That helped a lot!
Nice video, I'm 24 with 10ish degrees left. So dono if there's much relation between transitioning. BUT I don't ever use my white cane or haven't "let it" completely take my mobility or independence. Haha -____- I can vouch that you will most definitely turn into a meat magnet to neon yellow no slip signs, other wondering humans, and the occasional wall. Haha anyway you sound strong man so tho its going to be a freakish reality trip I have faith you'll pull threw!
Thanks Randal! What's it like at 10 degrees? Do you have other issues?
I don't have redness Pigmentosa but I know it but it is I have wet macular degeneration in both my eyes with Android streaks tomorrow I turn 56 years old I don't feel like I'm handling it very well I see less and less right in the center vision of my eyes everyday it's getting more and more difficult trying to find a reason to want to survive I see my retina specialist tomorrow on my birthday I planned it that way because I want to know where I am if it's 6 years old there's more to say but I don't know where to start but I like your story and I subscribed
Hang in there William. It can be scary and depressing for sure, but there are lots of different things we can do to stay active and productive! I try to focus on the things I can still do well, and look for ways to work around the rest. I've had to let other people do most of my driving and help me around in the dark. I don't like it, but learning to let other help is big!
Dude, Where DO we go to talk to people? I also have known about my rp since I was 12 and am now finally seeing a doctor at the age of 27. I found out a few days ago that I am legally not supposed to be driving. One thing that i find hard about the rp "experience" is sometimes when i'm trying to describe my impairment to someone they try to identify with me, " I can't see in the dark either", " I'm super clumsy too" ... sorry, I don't think its the same. lol
Hi Allison! I have the same experience when I tell people I don't see well. "Oh, I'm legally blind without my glasses!" It doesn't bother me because no know they don't understand, but it still feels a bit isolating. I have to renew my driver's license in a month and I don't know if I'll pass the test. Not being able to drive is going to be a big change ...
yeah, the idea of not being able to drive has been eating away at me for a while. It will be a big change. Good luck.
Nothing like walking into a room and asking another person where someone is when they're also within your shot.
Personally, I'm scared and struggling psychologically about sometimes
Yeah, that's not cool. I lose track of quiet people too! Sometimes my girlfriend will leave the room and I'll keep talking to her because I didn't see that she's not there anymore!
This can be very hard on your mind. It gets me some days too. I just try to remember that there are a lot of ways to live and enjoy life even if you can't see! Do what you can do today and try not to worry about what's coming. You'll handle that when it comes too!
I try not think about the "end point " because then I won't enjoy what I'm able to do/ see now.
It's also frustrating when other people don't seem to understand what's going on.
I have found people to be on two extreme points. They either treat you like you're completely blind or have 20/20 vision...
Yeah, that's kinda true. My dad had this disease too. He told me that the cane is for other people too. When people see the cane they understand you can't see and give you some space.
I don't know if you use a cane or not yet. Ive been getting started with cane training. I don't NEED it yet, but it's good to learn early!
Hi Bryan, I have RP also can’t drive at night and going out at night I need help walking around, stairs I try to avoid still wear glasses at this stage.
Stairs are the worst!
Hi I am 40 with RP. Last few years have been the biggest guest loss. It’s been difficult
Sorry to hear that Carla. It's strange how it seems to go in waves. What kind of challenges are you running into?
Its been 3 years since i got this curse.
It just make you think about the times you still have a perfect vision and you just want to see how people see normally i got very depress i dontk know what to do anymore its either ill wait until i go blind which is impossible for me to kill myself
I'm sorry to hear that Ryle it can be hard to deal with knowing you'll never see clearly again. I've struggled with that too, knowing I'll never see my grandkids, or what my children look like as adults. It is sad, but you don't have to let it beat you. You are more than just bad eyes! Look for other ways to make yourself happy. Find things you can still do and work with that.
My father had this same disease and I watched him go blind since I was a kid. Eventually he took his own life a few years ago. Losing my father was much more painful than going blind. He was my guide, my teacher, and friend, and I miss him so much. Suicide is not the answer, it just takes your pain and gives it to the ones you love to bear.
This is sad, it is a loss, but don't let it beat you. There are so many new things to help being developed, even a cure that is starting to work!
Don't focus on the bad part Ryle or that's all you'll find. Spend your energy on things that do bring you happiness and go forward with that!
I'm here to talk with you if that would help. Hang in there!
@@halfblindbryan thank you man i hope i can still find ways to be happy
Hey man. Just wanted to check in. How is your sight these days?
Thank you! I'm still doing ok! It's getting worse, but I can still get around ok. I run into things a lot. I quit driving a while back, that was a good idea.
@@halfblindbryan OK man, yeah I also stopped driving mostly. Only do short runs. Stay strong bro
Is there something that's coming for a cure? That's going to help you because I'm in the same boat. I have wet macular degeneration along with glaucoma. And I am slow lose my vision but I'm looking into stem cells and other things that. Can help? My. Vision are you doing the same
The stem cell treatments are very promising! There is also work being done with fish eyes. Fish can regenerate new eye cells if they are damaged. They are trying to find a way to introduce that to human eyes!
Hey Bryan, I too have RP but anyways do you have any other socials? I’d really like to chat with someone who having/had similar experiences as I do. Thank you
Hey Aaron, you can find me on Facebook. Last name is Herndon.