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Brother may be blind in the next decade. What can I do to ensure he has all the tools and skills he needs to live as full of a life as possible? (self.Blind)
submitted by dazed_and_catfused
Hello members of r/blind. My brother (22) has retinitis pigmentosa, and there's a good chance he will be blind by the time he is 30. He already has low vision in one eye, but the other eye still has 100% vision. He is seeing an eye doctor and taking medications to manage the condition. He also is in denial about the potential of being completely blind. He is currently living with my parents, and to be honest I am frustrated with my parents' lack of initiative and want to start figuring things out sooner rather than later. He's a great guy and I want to help him out. So I have a few questions I wanted to ask:
How do we go about telling him? I want to make sure his expectations are managed but deliver the news from a caring place.
What are some practical steps he or we can take to ease the transition? I want to ensure that he is able to live his life to the fullest potential once he is blind.
So far, I've thought of features like learning text to speech, moving to a city with lots of public transport, starting an investment fund that can be used in case he's out of work, etc.
Are there any wait lists we should get on to ensure that he has access to resources?
With regard to that point, I'm thinking of things like seeing eye dogs, assisted living places, etc.
What sorts of job opportunities would be good for him? He is currently working in retail and attending school remotely to get his associate's degree.
I am thinking some sort of programming, even though he doesn't have that experience, or something that involves a lot of talking on the phone. His current dream is to be a movie director, so if anyone has experience doing something in the film industry I would love to hear from you as well.
I would appreciate any and all insights and advice from you all. Thanks in advance!
How do we go about telling him? I want to make sure his expectations are managed but deliver the news from a caring place.
What are some practical steps he or we can take to ease the transition? I want to ensure that he is able to live his life to the fullest potential once he is blind.
So far, I've thought of features like learning text to speech, moving to a city with lots of public transport, starting an investment fund that can be used in case he's out of work, etc.
Are there any wait lists we should get on to ensure that he has access to resources?
With regard to that point, I'm thinking of things like seeing eye dogs, assisted living places, etc.
What sorts of job opportunities would be good for him? He is currently working in retail and attending school remotely to get his associate's degree.
I am thinking some sort of programming, even though he doesn't have that experience, or something that involves a lot of talking on the phone. His current dream is to be a movie director, so if anyone has experience doing something in the film industry I would love to hear from you as well.
I would appreciate any and all insights and advice from you all. Thanks in advance!
4humans 3 points 2y ago
Reach out to your local low vision specialist.
Public transport is big. Learn to use VoiceOver on iOS. Tons of great apps too. Learn to use a long cane and plan and navigate routes. An orientation and mobility specialist can help. I wouldn’t recommend a dog for a few years, until he’s adapted completely to life without sight.
Public transport is big. Learn to use VoiceOver on iOS. Tons of great apps too. Learn to use a long cane and plan and navigate routes. An orientation and mobility specialist can help. I wouldn’t recommend a dog for a few years, until he’s adapted completely to life without sight.
dazed_and_catfused [OP] 2 points 2y ago
Gotcha, after some googling those specialists look like they'd be very helpful. Interesting point about the dog, I guess it would be good for him to not always have to rely on it initially.
siriuslylupin6 2 points 2y ago
Everyone is saying get help and training. Yes this is very important but the one niggling little detail.
If he’s in denial he’s going to do none of it.
I don’t need to do this shit I am not going blind.
You have to address this first and this may take years and it may not be up to you. You can only lead the horse to water but you can’t make it drink.
It’s a good thing you care honestly but also honestly not much you can do acceptance is up to a individual person. And then as he losing his site pushing or forcing these training and adaptive things on him isn’t helpful. He has to want it. He may reject them.
The most important thing is be there and support him. And encourage him that there is a future that going blind is not the end of the world. And that a productive and fulfilling life is possible, if and when he wants it. That’s the only thing he can do when he’s ready for resources or if and when he’s grasping and wants help then gently suggest it. I’ve learnt in life that making someone do things is massively counter productive. And if they don’t want to making someone is going nowhere.
Watch some of the other stories on here of going blind. People’s relatives. Going blind is difficult and unless you’re massively strong and accepting most people are in denial until the last second when they can’t deny and some get depressed or give up. Losing vision is everything and think about it if you were losing vision. It’s a sighted person’s worse nightmare. For those who have gone through it and us blind people we know that’s not that bad but for someone without any vision issues..... yeah, pretty darn scary
If he’s in denial he’s going to do none of it.
I don’t need to do this shit I am not going blind.
You have to address this first and this may take years and it may not be up to you. You can only lead the horse to water but you can’t make it drink.
It’s a good thing you care honestly but also honestly not much you can do acceptance is up to a individual person. And then as he losing his site pushing or forcing these training and adaptive things on him isn’t helpful. He has to want it. He may reject them.
The most important thing is be there and support him. And encourage him that there is a future that going blind is not the end of the world. And that a productive and fulfilling life is possible, if and when he wants it. That’s the only thing he can do when he’s ready for resources or if and when he’s grasping and wants help then gently suggest it. I’ve learnt in life that making someone do things is massively counter productive. And if they don’t want to making someone is going nowhere.
Watch some of the other stories on here of going blind. People’s relatives. Going blind is difficult and unless you’re massively strong and accepting most people are in denial until the last second when they can’t deny and some get depressed or give up. Losing vision is everything and think about it if you were losing vision. It’s a sighted person’s worse nightmare. For those who have gone through it and us blind people we know that’s not that bad but for someone without any vision issues..... yeah, pretty darn scary
greenmtnfiddler 2 points 2y ago
>My brother (22) has RP, is in denial about being completely blind, currently living with my parents, I'm frustrated with their lack of initiative
Until this is addressed everything else isn't going to work as well as it should either. RP is its own special little pitfall of mental contortions.
"Most people with RP don't go totally blind" may be true, but still being able to sense areas of bright light doesn't mean you can still drive or recognize faces or use an un-adapted laptop/phone.
There's probably not a lot you can do directly to convince your brother to think differently, and trying might well cause more strife than is helpful, but you maybe can get him connected to a mental health provider who's familiar with the disease.
There are good adult re-training programs out there, and the more your brother works on learning adaptive skills while he still has significant sight, the more independently he'll be able to function later.
Good luck. My mother started going blind in her 40s, the progression was slow enough that the denial sank in deep, and our whole family dynamic was profoundly affected by the fallout.
Until this is addressed everything else isn't going to work as well as it should either. RP is its own special little pitfall of mental contortions.
"Most people with RP don't go totally blind" may be true, but still being able to sense areas of bright light doesn't mean you can still drive or recognize faces or use an un-adapted laptop/phone.
There's probably not a lot you can do directly to convince your brother to think differently, and trying might well cause more strife than is helpful, but you maybe can get him connected to a mental health provider who's familiar with the disease.
There are good adult re-training programs out there, and the more your brother works on learning adaptive skills while he still has significant sight, the more independently he'll be able to function later.
Good luck. My mother started going blind in her 40s, the progression was slow enough that the denial sank in deep, and our whole family dynamic was profoundly affected by the fallout.
dazed_and_catfused [OP] 1 points 2y ago
Yeah this is a good point. I’m realizing that this denial has to be addressed first before everything else can be taken more seriously.
Migmatite 2 points 2y ago
I suggest starting with sound production. I use Goldwave as I sent an email to the creator for JAWS scripts. Goldwave works along side the blind community to make sure their products are accessible.
My husband and I are saving up to afford Final Draft 10, I don't know how accessible with JAWS it will be and it will be some time before I can afford it, but I'll let you know when I get it how well it works.
Pre-2020, with my husband's help, we wrote small plays for our local community theatre. I helped with theatrics and sound production. I have no intentions of expanding into mainstream cinema so I can't really help you there.
My husband and I are saving up to afford Final Draft 10, I don't know how accessible with JAWS it will be and it will be some time before I can afford it, but I'll let you know when I get it how well it works.
Pre-2020, with my husband's help, we wrote small plays for our local community theatre. I helped with theatrics and sound production. I have no intentions of expanding into mainstream cinema so I can't really help you there.
Motya105 3 points 2y ago
Final Draft is inaccessible with Jaws. I haven’t tried it with other screen-readers.
Migmatite 1 points 2y ago
That's a bummer. Glad I didn't spend the money then.
dazed_and_catfused [OP] 1 points 2y ago
This is super helpful! I am glad that there are so many resources like this out there. We will definitely look into them. And yeah, keep me posted about your experiences with Final Draft 10! That's cool that you both have been involved in the local community theater, I'm sure you miss that right now.
thicccdragon 2 points 2y ago
This is a very difficult process and I empathize with your brother. Like others have said, encourage him to start training sooner than later. It might hurt his ego and he might feel a little ashamed, but keep encouraging him
Take care
Take care
dazed_and_catfused [OP] 1 points 2y ago
I appreciate and value your empathy!
KillerLag 2 points 2y ago
Start getting rehabilitation training now. Learning Independent Living skills and Orientation and Mobility skills will help with learning how to cope as his vision gets worse, and how to travel around safely.
Talk to a Low Vision Specialist to see what equipment he can get to maximize his usable vision.
Generally speaking, most guide dog schools require someone to get cane skills before getting a guide dog. The guide dog replaces the cane, but someone skill needs to know how to travel and what commands to give the dog.
Does he have any other health issues? Most people, with the right training, don't need to go into assisted living. But they also need to be accepting of their eye conditions. Some people get frustrated and give up, expecting others to take care of them. The key is to remind them they need to learn new skills to cope with their new condition.
Talk to a Low Vision Specialist to see what equipment he can get to maximize his usable vision.
Generally speaking, most guide dog schools require someone to get cane skills before getting a guide dog. The guide dog replaces the cane, but someone skill needs to know how to travel and what commands to give the dog.
Does he have any other health issues? Most people, with the right training, don't need to go into assisted living. But they also need to be accepting of their eye conditions. Some people get frustrated and give up, expecting others to take care of them. The key is to remind them they need to learn new skills to cope with their new condition.
dazed_and_catfused [OP] 1 points 2y ago
This helps break down the process. He does have some other health issues that may necessitate him to have some sort of care. I'll look into local specialists in his area. Thanks for the last comment too - that's a reminder that this process of acceptance will take a while.
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