Adjustment to late onset deafness

are you saying your spouse would get on you if you wanted to enrich yourself into deaf culture?

ONe more thing, don't force yourself into deaf culture if there is a problem with the wife.

I thought I would get all gungho in deaf culture, but find how shy I am of learning and expressing. Now Im just a deafy without deaf culture, but then again, nothing in my life dictates whether or not I am privvy to deaf culture.

hope that helps
 
I've had and am still having a hard time adjusting to hearing loss, even though it's only mild-moderate because I'm already blind. I can see up close and some colors up to a few feet away. In bright light I'm totally blinded by the brightness. My hearing loss is conductive and related to my TMJ. Fitting hearing aids with TMJ is frustrating because my the joints make my ear canals move, which makes the hearing aids move around a lot, not to mention painful. For now my audiologist and I have decided I'll only get HA's if my hearing gets worse, and then we will look into BTE's or custom ITE's.

It's been hard to adjust because I used to use my hearing a lot to navigate in space before, where I could hear trees and cars and so on on the road. But now I can't hear any of that so I can only rely on where the road ends and the grass begins, which is very disorienting for me. Right now I mostly only go out with my wife and if I go out alone, it's one of the very regular routes that doesn't involve cross a street or making any turns. I'm working with blind services now to relearn orientation and mobility with deafblindness.

My wife and I are learning tactile signing together. Right now we are using a lot of tactile fingerspelling in noisy environments. I can hear her fine when it's just us in the room and it's otherwise quiet, but when I go outside or if there is music playing, I have a hard time understanding her.

If there are any other members here that became hard of hearing/deaf in additional to blindness, I would appreciate getting some tips! :ty:
 
hohDougRN said:
are you saying your spouse would get on you if you wanted to enrich yourself into deaf culture?

ONe more thing, don't force yourself into deaf culture if there is a problem with the wife.

I thought I would get all gungho in deaf culture, but find how shy I am of learning and expressing. Now Im just a deafy without deaf culture, but then again, nothing in my life dictates whether or not I am privvy to deaf culture.

hope that helps
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yeah pretty much. She didn't think that learning asl now while I still have some hearing was more important than spending time at home those few nights a week. My wife has her own disability, chronic pisspoorpriorplanning. She tends to not think about the planning needed to complete a task. If it is simple then she is ok but if it is something in depth that takes a lot of prior planning then she falls short of the mark and then panics when the stuff hits the fan. So if left to her she wouldn't think that I need to learn asl until the point that she has to yell for me to hear her. Since learning a new language can take time and developing your skills to a fluid level takes even longer I want to prepare now while I have the time to make mistakes and then be corrected in my first language. While I learn I can pass some of it on to my 2 daughters, but I have no expectation of her learning it until after I can no longer hear. I need to learn asl and become part of the deaf community before I am an outsider to both hearing and deaf cultures.

This is why I am hoping for a significant drop in hearing since my last test. It will show her that it is happening now and it isn't a minor issue. She may not learn asl herself but at least she would support my choice to dive into the culture.
 
CJB said:
I've had and am still having a hard time adjusting to hearing loss, even though it's only mild-moderate because I'm already blind. I can see up close and some colors up to a few feet away. In bright light I'm totally blinded by the brightness. My hearing loss is conductive and related to my TMJ. Fitting hearing aids with TMJ is frustrating because my the joints make my ear canals move, which makes the hearing aids move around a lot, not to mention painful. For now my audiologist and I have decided I'll only get HA's if my hearing gets worse, and then we will look into BTE's or custom ITE's.

It's been hard to adjust because I used to use my hearing a lot to navigate in space before, where I could hear trees and cars and so on on the road. But now I can't hear any of that so I can only rely on where the road ends and the grass begins, which is very disorienting for me. Right now I mostly only go out with my wife and if I go out alone, it's one of the very regular routes that doesn't involve cross a street or making any turns. I'm working with blind services now to relearn orientation and mobility with deafblindness.

My wife and I are learning tactile signing together. Right now we are using a lot of tactile fingerspelling in noisy environments. I can hear her fine when it's just us in the room and it's otherwise quiet, but when I go outside or if there is music playing, I have a hard time understanding her.

If there are any other members here that became hard of hearing/deaf in additional to blindness, I would appreciate getting some tips! :ty:
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You might want to give these folks a shot:

http://www.thetactilemind.com/
 
My Story

I began to lose my hearing when I was 4 years old. No one really noticed it, until my speech did not develop like the other children my age. I have great speech now, and most people do not realize I have a profound hearing loss. I was fitted with HA's when I was 6 years old. I didn't want to wear them, I lost them all the time, and it wasn't until I started to notice I could not hear anything without them, that I wore them regularly.

What started off as a slight hearing loss gradually turned into a huge one. I can still remember the night I "lost" my hearing, or actually, when I noticed it. It was a huge drop and happened suddenly. I was sitting in church, listening to the pastor (I was about 8) and was waiting for the services to end. I was not wearing my hearing aids. I was able to hear fine, or so I thought. I was waiting to go outside and play dodge ball with the other church kids when services ended.

Well, when the services ended, all of us kids ran outside, when all of a sudden, I realized I couldn't hear a damn thing. I started shouting, couldn't hear it like I could a few minutes earlier. I continued to play thinking this "deafness" thing would go away. It never did.

I have what is called inner ear progressive nerve damage. This means that my hearing will decline (and it did) over a progressive time. I still wear HA's, I can't hear with them like I used to. It is hereditary. My father lost his hearing when he was in his 20's. He is completely deaf now and does not know sign.

I saw the gradual loss of my dad's hearing. It scared me. He is a semi-recluse. I used to enjoy being able to chat it up with dad, and now I can't do so as he does not know sign. I learned ASL because I knew this very thing was going to happen to me. The conversations with my dad are mostly emails, when we are face to face, a lot of misunderstanding takes place between the both of us.

I also get severe tinnitus, it keeps me awake. It is not fun at all.

I think what a lot of hearing and deaf do not realize about a person who has to wear hearing aids is this .... when a person whom uses hearing aids to communicate, suddenly has their hearing aid break, it affects EVERYTHING. It affects their job, their ability to function with others, it absolutely cripples them. A solid wall of a communication barrier pops out of nowhere.

Its happened to me years and years ago when my hearing aid would get chewed up by a dog and I would have to go to school. I couldn't hear my teachers, my friends, my family members. Its like a sudden panic attack, when your hearing impaired, living in a hearing world, when all of a sudden, you go deaf.

Well, I am nearly deaf now, and I have learned to cope with my disability. I learned ASL. I attended Gallaudet and really got an overdose of what living with HoH or deafness is really all about. I was taught how to identify discrimination, and taught whom to report it to. I was basically taught how to survive.
 
I admire all of you and thank you for sharing your stories. As someone who has been deaf since birth, I could never understand what it is like to lose hearing later on and how it affects your lives. These stories are inspiring!
 
shel90 said:
I admire all of you and thank you for sharing your stories. As someone who has been deaf since birth, I could never understand what it is like to lose hearing later on and how it affects your lives. These stories are inspiring!
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I am sure stories like yours are equally inspiring. While those of us with late deafness have lost something that we always knew, in a way it can be a blessing. Yes we will never be able to hear the voices of our loved ones AGAIN, we may know the sound of our baby giggling but will not have enough hearing left to know the sound of their voice by the time they are talking...... We may have these sounds ripped away from us but what we are given is the opportunity to join another culture. How many people get to fit in to 2 different cultures with a totally new language? The pain of loss that we feel is no more or less than the pain that someone like you goes through, it's just different. You went through life not being able to communicate with many people around you, going to speech class, and being told you are some how incomplete. What some Deaf people (those with prejudice against hearies/late deaf) don't understand is that their struggle was no more or less painfull, it was just a different kind of struggle.
 
Kender said:
II have recently noticed that on random days one of my ears will get the feeling like if you put you hand over it, kind of muffled and kind of echoish. I have also noticed things are more muffled and people tend to muffle more. So I made an appt for another hearing check to see how bad the Loss is.
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I clipped your post down a bit. This could be Meniere's, just from the way you describe it. You would most likely have some vertigo along with it. It could be other things as well.
BTW welcome back!
 
saywhatkid said:
I clipped your post down a bit. This could be Meniere's, just from the way you describe it. You would most likely have some vertigo along with it. It could be other things as well.
BTW welcome back!
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I don't get the vertigo at the same time as the echoish ear. I do get some vertigo from time to time although it is rare and lasts for just a few seconds. I am not familiar with the variations of meniers so I may need to look it up to see how much of it fits. I have an appt with a new ent in a couple weeks, then he will send me to the Audi to recheck my hearing. Most of the time I ignore the little stuff and don't notice symptoms unless they really interfere with daily life. It does make it harder to diagnose things though since I have to try and remember small instances that are not consistant. Thanks for the tip though I will be sure to check it out.
 
How many people get to fit in to 2 different cultures with a totally new language?
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Well put, Kender! It's like a new adventure. At least, that's the way I prefer to look at it. :h5:
 
I just wanted to take the time to welcome all the new people that have been posting over the last couple of months. It looks like you guys are doing a great job of supporting each other. That is so great to see, and just validates that one of the most valuable things in this world is the feeling of being understood and accepted.

Kender, I absolutely love your attitude. So healthy and optimistic.
 
:wave: HI JILLIO!

I am glad to see the supportive atmosphere and to read folks' stories too. I notice these things like, I keep turning the radio in car up more and more....and today I had a bit of vertigo and I hadn't had that in quite a while....and, although I've always been very visual person due to the LD, I now notice peoples' hands and faces even more. And am having more trouble hearing consonants. Have had that muffled and echo-ish kinda feeling, too, Kender. But some days are different than others. I tell people about this, but say - now, don't be sorry. I have access to another and different kind of understanding-
 
Jillio, I am so happy to see you back again. :welcome: back to AD again. I know we, Aders, miss you very much and are very relieve that you are not banned. :thumb: :D
 
Botts, I love the Potato Head signature. I can surely agree to the don't sympathize line. Oooh, I hate it when people tell me that they are sorry that I am deaf.

Jillio, its great to see you back.

It is difficult to make the transition, like one day there are no more consonants, king and ring look the same when trying to lip read, huh? You realize that you have only had the car a few months and the speakers are blown... the alarm clock - did it go off?? Every one mumbles... Your friends dont come around as much, or are frustrated with you...
It gets better. It depends on your attitude and support services, not just government VR or some such support, but friends and family, audios, technology, and for me it was learning a bit of ASL. But whatever works for you is good, like coming here to AD. (smile)
 
Nan_Mathews said:
Botts, I love the Potato Head signature. I can surely agree to the don't sympathize line. Oooh, I hate it when people tell me that they are sorry that I am deaf.
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Thanks Nan, I should let the newbies know that it isn't a message to them, and my signature will follow me everywhere until I change the theme.
 
Bebonang said:
Jillio, I am so happy to see you back again. :welcome: back to AD again. I know we, Aders, miss you very much and are very relieve that you are not banned. :thumb: :D
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Thank you, Bebonang. I missed you guys, too!
 
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