⚠️ TW. progressive hearing loss on top of blindness — how do you cope?

hello everybody, so I have nori's  disease which makes me blind which, isn't the issue for me. The issue is that it's gradually takes away hearing overtime. And I was just thinking in the future when I go completely deaf I don't think I would want to live anymore when I become both deaf and blind because that sounds like a fate worse than death. I wouldn't be able to do my hobbies anymore, I wouldn't be able to talk to people anymore, I couldn't listen to music, I couldn't play any games, and I couldn't do any of the things I like to do because they all rely on hearing in a way. For anyone like me going through something similar, how do you cope?

Hey man. I actually have the exact same sindrome as you. It doesn't appear though as if my hearing is going away yet or worsening, and I want you to relax a bit. Because while this can happen, it doesn't always have to, otherwise I wouldn't have it either.
Do you experience worse hearing already?
And honestly, I would be more than depressed too. I was never one of the most stable people around, so if this were to happen and I could notice it, depression would come around pretty fast, as I love music, sound, anything of that really.

I have some hearing loss, but it's not too bad and I still have most of my hearing in both of my ears. I can continue as life as normal for now.

I know of a few who have a similar condition and one who becamse completely deaf however now has hearing implants to allow him to hear again. Is this a possibility?

It doesn't often get to a point where it has to come down to that though from what I've heard.

Really, it seems different for each individual. It's cool to know I'm not the only one with it though, glad it didn't really impact me yet.

I always wondered, does anyone know how these implants work? Like what limits d they have and stuff.

From my understanding a cochlear implant is monaural. I only have the experience of one person, famous and now deceased, for this. He had the state of the art one at the time, so I don't know if the tech has advanced. The amount of frequencies being put through is quite limited when compared to normal hearing.

Hi, there has been an useful topic on ag forum recently, created by someone who is struggling with the same condition as you.
I'm also one of those people and I didn't know there are so many of us lol.
Technology, medicine is advancing. The good and bad thing depending how you look at it is that you don't know how much you will lose, meaning frequency and volume wise.
There are quite powerful hearing aids and in extreme cases cochlear implants, so it is not the end of the world, if you do lose a significant amount.
I don't wanna marginalise your fears, because I am battling depression exactly because I found out what this condition is and how it affects me, but the worst thing we can do is stop engaging in hobbies, social lives, and think about this and nothing else, which is basically what seems to happen to me in my worse phases of depression.
I wish you all the best. Scientists are actively researching therapy, farmacology and such that can help us. It's not easy, but you deserve to have a nice, satisfying life without it dreaining you. Try not to think too much of it until it gets worse, if it does. There is no clear answer here, but you can actually use this to give yourself hope, not to fear. As far as I know, most of us don't lose our hearing completely anyway.

lmao @8 he and I may or may not be the same person

i've got really bad tinnitus that's taking my hearing mostly from my left ear, and i have a hearing aide but i still have a hard time hearing myself when i talk so i can be very loud without realizing exactly how loud i'm being. and i do mix up other people's sentences especially when i'm not wearing the thing.

@9 That's not for me to judge :D If you are, then you won't get much more feedback here imo, but worth trying, I suppose.
@10 tinnitus is nasty, I feel ya. Before I lost a lot of the hearing in my left ear, it started with days of tinnitus which literally took over almost any other audio.

I mean, most of the posts were the same person or at least the same few people, and there is another post telling me that my fear doesn't matter because other people have it worse so I guess I thought it was worth trying something else also as well

Never look at that. They don't understand your fear or pain, so they won't acknowledge it. But the ones who do, know exactly what you're thinking about.

that's how it was for me too and i had to get the hearing aide for school so i could hear my quiet ass teacher better but i just kept it because it helps a lot

there are also some headphones/earphones that act as hearing aids

I would never ask people's opinions on the audiogames forum if I were you TBH.

Not that I like that place much myself, or rather, I'm not including myself a lot more than reading posts like twice a year if I feel like it, but what other constructive suggestions could you give him for expressing his concerns.
If it's none, since you didn't say any, why did you just post that?
Not judging but I'm serious.

Maybe as a warning?

@16, yes, you will never ask the audiogames.net opinion about anything, at least, under your own name because you were banned from there forever.
But I'm sure you'll make another alt to do just that in a matter of months though.
Or better yet, create threads on here to ask opinions about things based on your reading of the forum :)

I'm not banned and i don't like ask on audiogames about anything because always i got idiotic replies without help in a real problem which i have so i agree with Arctic.