My wife starting losing her vision at 30? I'm not sure there is really anything too comforting to say when this happens. It sucks and it's shitty. It doesn't get better. However, hopefully he can learn acceptance. If you can't change something in life, you just need to roll with it and make it the best you can with your circumstances. Tell him it's okay to be worried and scared. Be there to listen to him. He may or may not go through depression. The important thing is to let him vent. Make sure you keep getting him out to do things. Don't let him withdraw in a depressive state. Even if he gets depressed, try and keep him in engaged.

My advice may or may not be for you. I know my wife definitely got depressed but also accepted the reality. We still camp, hike, canoe, etc. Life goes on. I wish you and your brother luck.

I was diagnosed with RP at 19, 37 now, still very active, I've been a husband, father, and held several full time jobs. A visual impairment isn't an end, just a change. I know that seems cliché, but it's true. I'm legally blind now, but still active. I have bad days, but mostly my condition is just a minor inconvenience. I haven't had to stop doing things, just learn to do them differently. It might help your brother if you looked at his interests and did some research on how to make them accessible for him. I grew up very interested in computers, and thought that I would have to give them up at first, but later found out that computer accessibility is one of the easier hurdles. I still enjoy many of my old hobbies. I hike, go camping, and kayak to name a few. His future is largely defined by his perspective, if he embraces the changes and adapts he can have a fun, rich life. If not, it will be every bit as bad as he believes. Just try to be reassuring, and patient. When the time comes, help him bridge the gaps in his abilities to continue pursuing his aspirations.

I'm about the same age as your brother and in a pretty similar situation - my left eye was legally blind for a while and we were banking on my right eye doing the heavy lifting. Now the cysts in my right eye are starting to spread. XLRS is supposed to be a juvenile condition that shouldn't be getting worse in my 30's, but here we are.

The biggest thing that people can do to help me is not let it be a big deal if they're helping me. I get that independence, and it really sucks that I'm going to lose my license or that I can't read menu boards. My wife does all of the driving, she reads subtitles to me when we watch movies, and she tells me what she thinks I'd like from those stupid hanging menus that are all handwritten in really bad cursive.

I hate those things btw. Bad handwriting isn't artsy, it's just bad handwriting.

Let your brother know that you want to help, but that in order to do that he needs to tell you what actually helps. Knowing I have people who care and want to help, and more importantly that I'm not a burden on them when they do help, has been huge. The other side to independence isn't just that we don't want to depend on people, but that we don't want to be a burden on them.

Sometimes we just need people who understand. I have my worries and fears. Degenerative conditions suck. You're literally watching the world you're used to slip away. It's hard to have to give up on some things because it's a lot less safe to ride a bike down a hill at 40 mph, or you can't make out the details to know where the bumps are when you're snowboarding. Accepting the adjustments tends to lead into the harder days, where I have to acknowledge that my life is changing on me. There are days that are more difficult than others and so far I haven't found the magic words that make those better, sorry.

Losing a sense is like losing your spouse or other close family member. It's traumatic and causes you to go through grieving, grieving the loss, the change forced into your life, the loss of some hobbies and opportunities, etc.

I'd recommend he see a therapist or other professional to talk this out. I was 18 when I suddenly went from totally sighted to blind. I'm now 24 and have adapted fairly well, but it still hits me hard when all my friends are playing a video game or laughing at memes and I can't join in.

I second helping him find adaptations for his hobbies, but also don't push it too hard if he starts to slip into a depression. Stay there for him, but let him grieve. Ask him what to do to help, and let him take the lead. If he wants to mope, talk to him but let him start figuring things out. I wasn't given that freedom and I resent it.

Thanks guys. Our family is a little thin in numbers. I’ll do my best with him. He can come to work with me and sit in the woods while I work haha. It’ll get me doing more activities too I’m sure. Hopefully he embraces it.
There’s been some helpful info here. I’ll be sure to take it on board.
Thanks people,

i don't really have a lot of direct experience with what your brother is dealing with but i do have a couple points that might help.

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1) he has time to plan and adjust. he should use this time to ease himself into being blind so that he has the skills he needs to get by as a blind person.

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2) technology is making life a lot easier for people with disabilities. he should learn to use JAWS or NVDA while he still has some sight.

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3) there are a lot of blind role-models out there for him. people have achieve amazing things without vision.

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4) the most difficult part of having any disability is the emotional baggage that comes with it. this means that if he can deal with the emotional side of this issue actually overcoming the disability wont be as hard.

Don't ask him about his vision repeatedly. My family did that when I was losing my vision, it fucking pissed me off.

Just speak to him normally and don't give special treatment. It might have good intentions but sometimes too much can get out of hand.

All the responses here are so good! Just wanted to ad...

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In addition to that...

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1) You can tell him that while things might feel awfully scary, on the plus side, he has a brother who won't leave him. (You'd be surprised how many family members bale on someone when they go blind or have cancer. He's got you in the plus column, and that's going to come in handy.)

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2) There are counselors who specialize in vision loss/vision rehabilitation therapists.

Here's an example:

$1

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I didn't even know this existed until last week, so I thought I'd mention this. :-)