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How can I support my dad? (self.Blind)
submitted by TellMeWill
I’m not blind, but my dad is. I don’t know if this is the right subreddit for this, and I don’t want to offend anyone by posting in a sub for those who are blind, so please let me know if I should post this somewhere else.
My dad has Stargardt macular degeneration. He was diagnosed before I was born, so that was at least 17 or 18 years ago. His focal vision is bad enough that he was worried about accidentally hitting a pedestrian, and so for the last year I’ve driven him places and he bikes nearly everywhere if the distance is short enough. He and my mom have a business which allows them to go from house to house and his job does not require much reading. At the most, he just had to send texts to his clients, which he uses a voice to text program for. He has a lot of peripheral vision, but he’s got what he calls a “donut of blindness” in one of his eyes where he can see just a little in the center and the other has no central vision, only peripheral vision.
His eyesight had gotten to the point where he can’t really read most things, and I know it upsets him a lot because he and I are both avid book readers. He rarely gets visibly upset by this, and even though it makes me sad, I don’t want to make this about me and be upset at something that isn’t even a thing that I have to deal with personally. We still watch movies, but he has to look far to his left or right so that he can see with his peripheral vision, which he says is good enough that he can make out what is happening.
So I know my dad really dislikes audiobooks because he doesn’t like how the narrators always try and do “character voices” and I was wondering if there’s a different way for him to read books without having to actually read with his focal vision, as he has a hard time doing that.
Also, are there any other ways I can support my dad? Is there something you wish your relatives would or would not say or do?
Edit: also, I make sure to read movie subtitles, warn him when there’s steps or when he’s near the edge of a curb, and tell him specific things or actions that happen in movies when he asks me to.
My dad has Stargardt macular degeneration. He was diagnosed before I was born, so that was at least 17 or 18 years ago. His focal vision is bad enough that he was worried about accidentally hitting a pedestrian, and so for the last year I’ve driven him places and he bikes nearly everywhere if the distance is short enough. He and my mom have a business which allows them to go from house to house and his job does not require much reading. At the most, he just had to send texts to his clients, which he uses a voice to text program for. He has a lot of peripheral vision, but he’s got what he calls a “donut of blindness” in one of his eyes where he can see just a little in the center and the other has no central vision, only peripheral vision.
His eyesight had gotten to the point where he can’t really read most things, and I know it upsets him a lot because he and I are both avid book readers. He rarely gets visibly upset by this, and even though it makes me sad, I don’t want to make this about me and be upset at something that isn’t even a thing that I have to deal with personally. We still watch movies, but he has to look far to his left or right so that he can see with his peripheral vision, which he says is good enough that he can make out what is happening.
So I know my dad really dislikes audiobooks because he doesn’t like how the narrators always try and do “character voices” and I was wondering if there’s a different way for him to read books without having to actually read with his focal vision, as he has a hard time doing that.
Also, are there any other ways I can support my dad? Is there something you wish your relatives would or would not say or do?
Edit: also, I make sure to read movie subtitles, warn him when there’s steps or when he’s near the edge of a curb, and tell him specific things or actions that happen in movies when he asks me to.
chubbyspoon19 8 points 2y ago
You can look into state resources, if you go on the vision aware website you can look them up by state.
For reading you could try apps like seeing AI which is free and has text to speech feature, if you google text to speech apps it should pull up other options, some are free some you have to pay for. He might be a good candidate for eccentric viewing(can’t confirm but honestly would be worth a shot) that would require help from a professional.
For reading you could try apps like seeing AI which is free and has text to speech feature, if you google text to speech apps it should pull up other options, some are free some you have to pay for. He might be a good candidate for eccentric viewing(can’t confirm but honestly would be worth a shot) that would require help from a professional.
TellMeWill [OP] 3 points 2y ago
Thank you so much! I will mention this to him!
gwynaweird 6 points 2y ago
My mom is in a similar boat. A few years ago she actually gave me her library because she couldn't read them anymore.
But, she really likes it when I read to her? Just short stories and things like that. Of course I am not as polished as people who do it for a living, so it often takes forever to get through one story as I mess up words and we laugh or we get talking about a passage. But in reality? Those are the best parts.
I know this doesn't really solve your problem, but there already were a lot of awesome suggestions, so I thought I'd share my family's.
But, she really likes it when I read to her? Just short stories and things like that. Of course I am not as polished as people who do it for a living, so it often takes forever to get through one story as I mess up words and we laugh or we get talking about a passage. But in reality? Those are the best parts.
I know this doesn't really solve your problem, but there already were a lot of awesome suggestions, so I thought I'd share my family's.
TellMeWill [OP] 4 points 2y ago
Thank you so much for this comment, I really appreciate it! I will absolutely offer to read to him. He used to read to me when I was younger, so it would be great to return the favor now.
Defenestrar1 1 points 2y ago
My son is old enough to enjoy the Hardy Boys books my dad used to read to me. Now I record myself when I read them to my son and can email them to my dad. So you'll find ways to help even as you keep growing up.
first-nams 4 points 2y ago
Sounds like you’re already doing a fab job. I know you mentioned that you’re managing movies fine - but the audio describe feature, particularly on Netflix, is amazing. My dads blind and we’re currently watching Brooklyn 99 and even as a sighted person you get used to the audio describe almost immediately.
My dad listens to heaps and heaps of audiobooks - you could try and find a couple podcasts you and your dad could listen to?
My dad listens to heaps and heaps of audiobooks - you could try and find a couple podcasts you and your dad could listen to?
whiskeyandtaxes 5 points 2y ago
Thank you. I didn’t know about this but just gave it a try. It’s wonderful. The narration is clear and not distracting. Kind of like listening to an audio book but better. I didn’t know about this.
first-nams 3 points 2y ago
Yeah we only recently found out about this and that’s exactly how we describe it - like a more involved audiobook! Glad I could help.
astrolurus 3 points 2y ago
Yes my central vision is fine but I turned ad on for criminal minds once and realized I had been missing most of what happens in the darker scenes- was floored how helpful they were
astrolurus 3 points 2y ago
Not all audiobooks use character voices. Some of the NLS ones are made by volunteers and are much less commercial sounding, and nonfiction books tend to avoid being excessively dramatic.
If he joins the NLS/is a member a lot of states now include bookshare as part of the service, which would allow him to read books with text to speech similar to a screen reader using an app like voice dream reader.
Also, depending on how much he’s able to see with his remaining vision (I can’t tell from your posts if this is a possibility) a CCTV may help him read large print or an ereader or tablet with very large font. Depends on his own vision levels, think about it operating like a larger digital handheld magnifier.
I think this sub is generally receptive to answering questions about family members as long as people do a basic search first. Trolling (“blind people can’t use reddit!”) and cursory research questions (“I am making a revolutionary smart cane replacement” “why do you hate your cane I will put more electronics in it”) tend to be much more annoying.
If he joins the NLS/is a member a lot of states now include bookshare as part of the service, which would allow him to read books with text to speech similar to a screen reader using an app like voice dream reader.
Also, depending on how much he’s able to see with his remaining vision (I can’t tell from your posts if this is a possibility) a CCTV may help him read large print or an ereader or tablet with very large font. Depends on his own vision levels, think about it operating like a larger digital handheld magnifier.
I think this sub is generally receptive to answering questions about family members as long as people do a basic search first. Trolling (“blind people can’t use reddit!”) and cursory research questions (“I am making a revolutionary smart cane replacement” “why do you hate your cane I will put more electronics in it”) tend to be much more annoying.
TellMeWill [OP] 3 points 2y ago
Thank you so much! I really appreciate that you took the time to make this comment, and it was very informative and helpful. I will mention all of these things to him.
astrolurus 1 points 2y ago
My pleasure- glad I could help!
JadeGrapes 3 points 2y ago
Has he considered learning braille?
TellMeWill [OP] 2 points 2y ago
He’s mentioned it, but he’s concerned that it won’t be easy to learn, and he doesn’t know how often Braille would be accessible to him. I will mention it to him again, though. Thank you!
Defenestrar1 2 points 2y ago
My father was 65 when acutely blinded and has elected to not learn Braille so far because he had a lot of other skills to learn all at once and lots of other injuries to simultaneously deal with. However, with respect to how often it's available, your father would be able to get lots of books from the National Library Service ($1).
Also there are refreshable braille displays that interface with electronics. You can search YouTube for practical examples, or see it occasionally used in the Netflix Daredevil series (which has audio descriptors) if you'd like it to be introduced through fiction. They're expensive, but there may be state resources to help out.
My daughter's fourth grade teacher had macular degeneration and was able to keep working with some assistive devices that helped with magnification and eccentric viewing. A vision specialist would be the best person to advise on this.
Finally, you might look into what the local public transit is like. Your dad probably qualifies for some sort of dial-a-ride. The quality of such services varies a lot by location. But it can help him get beyond just bike range if you or your mom aren't available to drive (bonus if the dial-a-ride has bike racks).
Also there are refreshable braille displays that interface with electronics. You can search YouTube for practical examples, or see it occasionally used in the Netflix Daredevil series (which has audio descriptors) if you'd like it to be introduced through fiction. They're expensive, but there may be state resources to help out.
My daughter's fourth grade teacher had macular degeneration and was able to keep working with some assistive devices that helped with magnification and eccentric viewing. A vision specialist would be the best person to advise on this.
Finally, you might look into what the local public transit is like. Your dad probably qualifies for some sort of dial-a-ride. The quality of such services varies a lot by location. But it can help him get beyond just bike range if you or your mom aren't available to drive (bonus if the dial-a-ride has bike racks).
JadeGrapes 2 points 2y ago
These are great thoughts
siriuslylupin6 1 points 2y ago
It would be constantly available to him if he wanted. He could after learning get a braille display. No not very easy to learn but at some point he will learn it if he perseveres.
JadeGrapes 1 points 2y ago
I've heard it is about as hard to learn as anyone trying to learn a foreign language.
Definitely an effort, but if I had to learn Spanish to be able to read for myself... I would expend the effort.
My understanding is public libraries have some kind of programs to provide Braille books because it's like an equal access issue.
Not trying to tell you what to do, but I think it's at least worth learning if your local library or adult education has any kind of education session that would explain what a Braille class is like, when theyre offered, and what the local Braille book access is like.
Like a one hour explainer session could change the next 20 years of your Dads life in terms of Autonomy, Entertainment, and Access to information.
Definitely an effort, but if I had to learn Spanish to be able to read for myself... I would expend the effort.
My understanding is public libraries have some kind of programs to provide Braille books because it's like an equal access issue.
Not trying to tell you what to do, but I think it's at least worth learning if your local library or adult education has any kind of education session that would explain what a Braille class is like, when theyre offered, and what the local Braille book access is like.
Like a one hour explainer session could change the next 20 years of your Dads life in terms of Autonomy, Entertainment, and Access to information.
liselotta 3 points 2y ago
Hey there, my husband also has Stargardt and he's been going through the same things as your dad, so I know a bit of the helplessness you're feeling! You sound very considerate and compassionate, your dad is lucky to have you!
My husband is an avid reader as well (and also dislikes audiobooks!) What has worked for him so far is getting a Kindle and using very large font. He prefers the Kindle without backlighting, as his eyes are pretty sensitive to light. He can also read things like letters by using a magnifying glass. If your dad doesn't have either of those I would definitely suggest getting them.
Try to get him to go to a retina specialist so he can be in the loop for any possible clinical trials, and $1 clinical trials to see if there are any near you that he may want to be involved in. My husband still wears contact lenses to sharpen the vision he has left, so make sure your dad still sees a regular eye doctor to get his prescription checked.
That's about all I can think of, but DM me anytime if you have questions or want to vent. My husband is 35 and has been diagnosed since he was 21, but Stargardts is different for everyone so I don't know if he is further along in his vision loss than your father or not.
My husband is an avid reader as well (and also dislikes audiobooks!) What has worked for him so far is getting a Kindle and using very large font. He prefers the Kindle without backlighting, as his eyes are pretty sensitive to light. He can also read things like letters by using a magnifying glass. If your dad doesn't have either of those I would definitely suggest getting them.
Try to get him to go to a retina specialist so he can be in the loop for any possible clinical trials, and $1 clinical trials to see if there are any near you that he may want to be involved in. My husband still wears contact lenses to sharpen the vision he has left, so make sure your dad still sees a regular eye doctor to get his prescription checked.
That's about all I can think of, but DM me anytime if you have questions or want to vent. My husband is 35 and has been diagnosed since he was 21, but Stargardts is different for everyone so I don't know if he is further along in his vision loss than your father or not.
TellMeWill [OP] 3 points 2y ago
Oh my gosh thank you! I’m not going to lie this made me tear up just a bit. It’s a strange sort of commonality to have with an internet stranger but I really appreciate your comment. I’ll definitely tell him about all of the things that you mentioned. Thank you so much!!!
siriuslylupin6 1 points 2y ago
Turn on accessibility and have it read to you the tts can read the text.
Revenant624 3 points 2y ago
You should see if the Kindle has some sort of text to speech accessibility feature on it. It’s unfortunate your father doesn’t like audiobooks. I think they are awesome. I use the BART app which is free for those that are blind, visually impaired, etc. plus it is easy to use
andi1235 2 points 2y ago
Sounds like he would definitely be eligible for Bookshare. It's only $50/year for non-students. $1
siriuslylupin6 1 points 2y ago
If he’s not a student it would cost him $50 a year.
Blind-Legend 2 points 2y ago
I don’t know if this has been posted already, but you can use an Alexa enabled device to read Kindle box, hope this works for your father.
SuckMyPlums 2 points 2y ago
On iPads/iPhones there’s an option to speak the text which can be used on normal ebooks. This would read the ebooks in a Siri voice which he might enjoy better than the narrators. Apple devices in general have really nice accessibility features like VoiceOver, an iPhone might make his life easier if he doesn’t already have one.
siriuslylupin6 1 points 2y ago
Have you thought of buying apple or kindle books then turning on the speech to read it? The accessible screen reader?
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