Blind and Visually Impaired Community
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Want to help a friend who’s losing his vision. (self.Blind)
submitted by AshFaden
I have a friend who is suffering from cone-rod dystrophy and is slowly losing his vision. He is in his 30s and is having a lot of trouble coping.
He has a hard time reading things so I am trying to help him find something.
He lives in California.
Thank you
He has a hard time reading things so I am trying to help him find something.
He lives in California.
Thank you
snow671 4 points 2y ago
Does he have a smart phone with a camera? Apps like KNFB Reader will read text he points the camera at.
$1 There may be one near your friend.
$1 There may be one near your friend.
viciousSnowFlake 3 points 2y ago
Damn this sounds just like me other than location. (I have Stargardt's and Cone Rode dystrophy).
What is he having problems reading? His phone? Books?
What is he having problems reading? His phone? Books?
AshFaden [OP] 4 points 2y ago
He has problems reading anything. It’s hard for him to see anything. He described it to me like there are spots right in and around the center of his vision which makes it very difficult to see things like text or details.
He’s just having a hard time coming to terms with how his life is changing
He’s just having a hard time coming to terms with how his life is changing
ThisBlindChickReads 6 points 2y ago
This sounds like me too... I am in CA... Coping is the hardest part. What made my life easier in the beginning is having friends that never treated me like a chore. When out to dinner they would just scan the menu quickly and say they they have a :::whatever they thought I may like::: that looks great! ... I have a couple who just mentions when there is an incline or step (cone/rid dystrophy destroys depth perception). But, it us they way that may friends do those things while still never treating me differently. We are not less capable and that is some shit that is hard to remember in the beginning (for me too,still).
The most difficult thing at first is the mundane tasks that require driving, like getting groceries ... When you need groceries offer a ride for him too. ... Or just getting out of the damned house.
Doctors visits also are a pain especially because specialists are usually an expensive/long drive away... When they mention an upcoming visit maybe be willing to not just ask if they need a ride (it is really hard for me to ask for anything) but offer or insist that you can take them.
My friends who have stuck around give me strength ... Text/call them when you think about them ... A therapist does help but I understand suggesting that may be awkward and shut them down.
The most difficult thing at first is the mundane tasks that require driving, like getting groceries ... When you need groceries offer a ride for him too. ... Or just getting out of the damned house.
Doctors visits also are a pain especially because specialists are usually an expensive/long drive away... When they mention an upcoming visit maybe be willing to not just ask if they need a ride (it is really hard for me to ask for anything) but offer or insist that you can take them.
My friends who have stuck around give me strength ... Text/call them when you think about them ... A therapist does help but I understand suggesting that may be awkward and shut them down.
AshFaden [OP] 3 points 2y ago
Your experience sounds similar to my friend for sure. He doesn’t drive anymore sadly.
viciousSnowFlake 5 points 2y ago
I have the spots as well.. There's no real way around them unfortunately.
If he has just started noticing things in his 30s maybe it's a more mild version. Atleast that's what my doctor has told me.
If he has just started noticing things in his 30s maybe it's a more mild version. Atleast that's what my doctor has told me.
AshFaden [OP] 4 points 2y ago
It’s just gotten worse, he’s had it since he was a young teen.
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Fluid_Calligrapher25 2 points 2y ago
Is he a member of the national federation of the blind? Their convention is virtual this year. Well worth it.
AshFaden [OP] 1 points 2y ago
I’ll keep that in mind and pass it along. Thank you!
8772263111 2 points 2y ago
I lost my vision at 13, so my life was pretty much turned upside down. Here are a few things that helped me or people I know:
-therapy obviously can help to deal with vision loss but also the changes that come with it
-there are several apps for blind people, some for color recognition (ColorSay), some for scanning documents (Prizmo Go, or just the function in the notes app), Be My Eyes videocalls sighted people for you, for example when you dropped something and can’t find it etc
-talking to people that have been in a comparable situation, seeing how they manage life and aren’t completely dependent on someone else can be quite helpful
-audiobooks, audiobooks, audiobooks. Nothing more to add, they are great
-depending on how much vision he already lost he could also try reading on an iPad
I just woke up so I’m probably missing a lot lol but I’ll definitely add some more if they come to mind :)
in general: just try to make the things he loved before as accessible as possible. Learning to live with vision loss is hard, but possible. If he loved to drive maybe take him to a place in the middle of nowhere and let him drive around a little (of course slow and under supervision but you get my point), if he loves to cook then find ways to make his kitchen accessible. Start with easy things like pancakes, I promise it will get easier. Try to keep things as normal as usual as giving up loved activities is usually really fucking hard and can make you feel even more desperate, but be also open for new activities :)
Lots of love
-therapy obviously can help to deal with vision loss but also the changes that come with it
-there are several apps for blind people, some for color recognition (ColorSay), some for scanning documents (Prizmo Go, or just the function in the notes app), Be My Eyes videocalls sighted people for you, for example when you dropped something and can’t find it etc
-talking to people that have been in a comparable situation, seeing how they manage life and aren’t completely dependent on someone else can be quite helpful
-audiobooks, audiobooks, audiobooks. Nothing more to add, they are great
-depending on how much vision he already lost he could also try reading on an iPad
I just woke up so I’m probably missing a lot lol but I’ll definitely add some more if they come to mind :)
in general: just try to make the things he loved before as accessible as possible. Learning to live with vision loss is hard, but possible. If he loved to drive maybe take him to a place in the middle of nowhere and let him drive around a little (of course slow and under supervision but you get my point), if he loves to cook then find ways to make his kitchen accessible. Start with easy things like pancakes, I promise it will get easier. Try to keep things as normal as usual as giving up loved activities is usually really fucking hard and can make you feel even more desperate, but be also open for new activities :)
Lots of love
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AshFaden [OP] 1 points 2y ago
Thank you so much for your advice.
Right now one of his biggest hurdles is getting something that can read the text on screen to him. He just doesn’t like the synthetic robotic voices that come with many of those readers.
He likes the siri or Alexa voice style that sounds a bit more fluid or human.
Thanks again for your advice I’ll keep it in mind and pass it along.
Right now one of his biggest hurdles is getting something that can read the text on screen to him. He just doesn’t like the synthetic robotic voices that come with many of those readers.
He likes the siri or Alexa voice style that sounds a bit more fluid or human.
Thanks again for your advice I’ll keep it in mind and pass it along.
8772263111 1 points 2y ago
I highly recommend male voices for Voice Over, I personally find them more human. You can also change their tone to sound less like a robot :)
HotFloorToastyToes 2 points 2y ago
I am in same boat!! I have central vision loss from a stroke and it was so very hard to come to terms with how different my life became. I taught myself how to read again but it is now a scanning backward and putting wwords and sentences together. Bright phones with big text. A cane not only helps you in your blind spot but also signals to people that you have low vision. Amazing suggestion from above to offer to get them out of the house but my anxiety has gone out the roof since losing my vision so I struggle with new places or cluttery stores or places. Seriously my cat helped alot too, she always hangs out with me and I dont feel as lonely. Audio books and have him try different sizes of TVs ( I'm serious) I got a massive tv that is perfectly placed to be optimal. It is very hard to read so no subtitles or flashy games. I play gta in my peripheral cause driving is what I miss the most. Still have issues writing since I cant see my hands but surprisingly easy to memorize a keyboard on my phone so typing is easier then writing. Music. Water therapy like swimming. Those are my suggestions..
AshFaden [OP] 2 points 2y ago
Thank you for your suggestions. I appreciate you taking the time to write that out.
I’ll make sure to pass on what you said
I’ll make sure to pass on what you said
amelia_earhurt 1 points 2y ago
The Library of Congress has a service for the blind and print disabled called BARD. It gives you access to Braille and audiobooks among other things.
https://www.loc.gov/nls/
https://www.loc.gov/nls/
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