Adjustment to late onset deafness

A loaner HAS!!! that would be fantastic!! I only hope they pick the right model for you, too - fingers crossed!!! :) :) :)
I guess it would be really hard to explain the noise to your doctor if you were never able to hear them before.
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oh, don't get me start!!

The audi always asks me when they fit me with the new HAs
or program the actual ones - "how does it sound like?"
and I am like "ummmmm...... it sounds 'tin-ny",

only to discover later how what I consider 'tin-ny" is not tinny
by the hearies standards at all!
grrrrrrrrrrrrrrrrrrrrrrrrrr

Fuzzy
 
Hey folks, bit about me...

I'm 18 and was born with a mild hearing loss (bout 30-40dB) on both sides and started wearing hearing aids when I was a little kid. Stopped wearing them when I started high school cos I convinced myself I wouldn't be able to make any friends while I had them. I didn't want to be different and decided to try hide my hearing loss.

Recently my hearing has dipped to about 75-80dB so I'm going to have to give hearing aids a go again. I'm pretty nervous bout it all, don't know what to expect. Just don't wana be that kid again who hates his hearing loss and who looks like a right dingbat in group scenarios because he has no idea what's going on.*

I've never met any other hearing impaired (is that the right word??) person in my life and I'd like to... I'd like to learn more from y'all

Ps. I don't know if its strictly late-onset but my hearing loss has dipped and it feels like a big adjustment so here felt like a decent place to start*:)
 
:wave:welcome, Jakey

but for me, I don't like "hearing impaired" because I'm not impaired and no reason to focus on something that is harder for me.
I'm me and there is nothing wrong with it-
 
dogmom said:
:wave:welcome, Jakey

but for me, I don't like "hearing impaired" because I'm not impaired and no reason to focus on something that is harder for me.
I'm me and there is nothing wrong with it-
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Hey :)

Oh okay I see where your coming from. Maybe another terms better then sorry :)
 
Welcome to AllDeaf (AD) Jakey

This is a great forum to meet other people with hearing loss. So stick around and get to know some of us. You'll range a wide range of responses to how people cope with hearing loss and deafness. Like you I was born deaf, but grew up knowing only hearing people. It was a wonderful experience for me discovering AD and meeting so many other Deaf/deaf/HoH people.
 
Jakey, you might want to start thinking about the word "deaf". Even though the hearies think this is a negative word, most of us here see it as a positive word and even an empowering word. It gives you the freedeom to choose how you live your life in a hearing world. It makes it ok to go a day without the HAs, or even go voice off. It also opens the door to one day calling yourself Deaf (capitol D to signify culturally Deaf). If nothing else, just try it on for size. Once you decide you really are deaf, then you start looking at the world a little differently. Suddenly it's a no brainer to ask for accommodations at a school. Its easier to turn down a day at a concert because you have other things you would enjoy more than trying to hear something you no longer hear. Things like that. My parents cringed the first time I started calling myself deaf. Now they are used to it and even refer to others that I am deaf. It was a big relief when they finally accepted who I really am (not everyone gets this).
 
Hey, nice to meet you guys!

I've spent my whole life so far trying to do my best to ignore having a hearing loss. I stopped wearing hearing aids and I've never had any help in school - just did my best to avoid acknowledging I didn't hear as well. Now my hearings worse and I can't ignore it anymore!! I'm hopefully getting new hearing aids in the new year but I wana learn more bout deafness and all that. I've never thought of myself as deaf/hearing impaired. I'd like to learn to accept my hearing and be okay with it... that's what I'm working towards here

Culturally deaf? I've never heard that term before... Not clue
 
Jakey said:
Hey, nice to meet you guys!

I've spent my whole life so far trying to do my best to ignore having a hearing loss. I stopped wearing hearing aids and I've never had any help in school - just did my best to avoid acknowledging I didn't hear as well. Now my hearings worse and I can't ignore it anymore!! I'm hopefully getting new hearing aids in the new year but I wana learn more bout deafness and all that. I've never thought of myself as deaf/hearing impaired. I'd like to learn to accept my hearing and be okay with it... that's what I'm working towards here

Culturally deaf? I've never heard that term before... Not clue
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Its nice to meet you too!

Stick around for a while and you will learn what it means to be culturally Deaf. Also read some of the threads and pay special attention to threads where we talk about "Audist" or "Audism". Often in everyday life we encounter situations where our ability to participate is hampered because of ignorance or blatant exclusion. You will learn how others cope with situations where communications is really important and really difficult because of things that hearing folks do, sometimes without thinking.
 
Okay thanks for the advice

Yeah communications a BIG issue at the minute and it feels like a heck of a adjustment but things'll get better I'm sure.*I've got a lot to learn and this seems like the place to do it :)
 
Jakey--

I discovered about a year ago that my hearing had taken a huge dip, and it was a lot harder to adjust to than I had expected. I'd always had hearing loss, but didn't wear hearing aids for very long, and I guess I didn't believe the audi when he told me I had a high chance of being profoundly deaf by my thirties.

Like Cheetah said, there was this huge shift for me once I stopped saying I was hard of hearing, once I stopped trying to *be* hearing, and started saying I'm deaf. Somehow, it even makes the communication difficulties easier.

I guess what I'm trying to say is we understand what you're going through. :welcome: It isn't easy, but you'll get there. :wave:
 
I lost all my hearing about 7 months ago very sudden. I just asked my husband to be totally honest with me. I asked him if my voice was changing. I read it hear about the "deaf accent". I thought that wouldn't happen to me since I was hearing for so many years. I know I have trouble with volume control. But, he just told me I'm starring to sound monotone at times. Now, I understand what everyone was talking about. I guess that's why some choose to go "voice off". Oh well, just another hurdle to jump!!!
 
Angle1989 said:
I lost all my hearing about 7 months ago very sudden. I just asked my husband to be totally honest with me. I asked him if my voice was changing. I read it hear about the "deaf accent". I thought that wouldn't happen to me since I was hearing for so many years. I know I have trouble with volume control. But, he just told me I'm starring to sound monotone at times. Now, I understand what everyone was talking about. I guess that's why some choose to go "voice off". Oh well, just another hurdle to jump!!!
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Angel....I lost my hearing at age 14 years old. I don't remmy when I started to have the "accent"....but it did not deter me from still talking....and 50 years later, I'm still talking!...If I had of went "voice off", I'm sure that I would have forgotten how to "talk"......I'm sure as your speech sort of declines, ur family will still be able to understand you! As long as you keep talking. I talk to any and everybody I meet....only a few will say "pardon me?"

Of course, there are certain words that I do struggle with, that I don't use often....but basically, I speak very simple. My doctor thinks I'm "very unique" in this aspect (my talking)...Good Luck, Angel!...It might be another "hurdle for you to jump, but I'm positive you'll jump it. :wave:
 
Still talking

rockin'robin said:
Angel....I lost my hearing at age 14 years old. I don't remmy when I started to have the "accent"....but it did not deter me from still talking....and 50 years later, I'm still talking!...If I had of went "voice off", I'm sure that I would have forgotten how to "talk"......I'm sure as your speech sort of declines, ur family will still be able to understand you! As long as you keep talking. I talk to any and everybody I meet....only a few will say "pardon me?"

Of course, there are certain words that I do struggle with, that I don't use often....but basically, I speak very simple. My doctor thinks I'm "very unique" in this aspect (my talking)...Good Luck, Angel!...It might be another "hurdle for you to jump, but I'm positive you'll jump it. :wave:
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I hopefully will always use my voice. I'm a talker. I'll talk to anyone who will listen, I guess I didn't expect this change in my voice so soon, oh well, it's all good. I might have found a ASL tutor also. So much to look forward to this New Year, I haven't felt this happy in a long time. We are hopefully getting our kitchen remodeled. The tile guy came today to measure. Hopefully the hubby will still want to do it after we get the quote. I'm a little nervous about Christmas day. Lots of relatives I haven't seen in years. Plus, loud football games and noise, noise, noise. At least I'm able ro be here this Christmas. I give great thanks for that. Hope you have a wonderful, healthy, happy New Year. God knows, we both could use one!!!:angel:
 
This is my first post in this forum. I'm not sure I fit in here except in the late-deafened section or whatever. I'll tell you all my story:

I'm a middle-aged woman who can say she has lived a fairly normal life. I have three kids, two grown, I'm married, and I've led an active life and held down several different jobs. I've always been a big music fan. When I was in my 20s I began having problems with Meniere's disease, I won't go into the details here, but I've had a slow progression of problems with the disease. For many years it was on my left side only, and after a virus I lost almost all of my hearing on my left in one weekend. I stablized like that and went quite some time with one-sided hearing loss and on and off difficulty with Meniere's disease. About seven years ago I got a BAHA installed on the left side and had two years of wonderful two-sided hearing which I enjoyed very much.

Unfortunately, the Meniere's went bilateral and has been actually much worse on the second side and I have little balance or hearing left. BAHA is not useless. I call myself "deaf" although I hear useful sounds. I have a lot of problems with vertigo and migraines as well, so I've lost my ability to drive safely, and combined with my hearing loss, these factors all led up to me failing at my last couple jobs and finally having to quit the last one and apply for disability.

I enjoyed working, I am a social person and this was all very hard for me to accept. Part of what was hard was realizing I really was not the employee I had once been and could not complete my schedule because of illness. I had also been an active volunteer in several endeavors and had to stop that as well, and many of the duties of parenting have fallen to my husband lately instead of myself, because of communication and travel difficulties. My husband and I have a small farm and it is hard to even go out and fill the hay feeder sometimes and I rely on my family members a lot. It feels like I am so much less than I used to be...and I'm only 52.

I did have many of the issues discussed here, due to fluctuating hearing loss people did not understand my issues or necessarily believe me, they often thought my hearing loss was "convenient" or that I used it as an "excuse." While I've gradually learned to read lips, I slowly lost the ability to use the phone, to drive and have become quite dependent on family. While my family is supportive, they have been resistant to learning ASL. Instead, we REPEAT things constantly or communicate via computers instead of face to face, or pantomime and finger spell a little and in general we have grown dysfunctional. Since I speak well, they depend upon me to adapt. This has gotten harder and harder and harder until at this point I'm about ready to give up.

I had gotten extremely depressed during my last year of working, I had been singled out as the person who would do "anything" to keep her job and so they gave me the yuckiest grossest things to do (I worked in a vet clinic) and it really bordered on abusive. They KNEW I could not apply for other jobs because I had lost more hearing since I had gotten that one. It was convenient for them to have someone do what I did. But it was really bad for my self esteem. I had once managed offices, thought my poop didn't stink I guess....and I a few short years later, here I was dumping the trash, cleaning up barf and scooping dog poop. I had once been the favorite employee at every job I held, and here I was, the only one not receiving vacation pay because I was "sick" a lot while I did every undesireable thing there was to be done.

I finally had enough of all that, but by that time I was really in a depression. Our financial situation went from good to terrible quickly, as I had been a transcriptionist prior to losing my hearing and the vet clinic job was a cut in pay of almost 1/2. During this time we lost our nice house and downsized and my husband has also become ill, so the crap kind of hit the fan for us all at once. I finally got accepted to SSI and have slowly been coming out of the dark hole of depression and realizing I need to fix up my life a little.

Losing the use of the telephone and the car has been so devastating to me! I'm working at getting a CAP phone right now (just read about it from a link here!) so I hope that things will get better along that front. I hope the vertigo issue will be dealt with in an upcoming surgery.

But my reason for telling my story.....I am not a part of the deaf world. I don't know a single deaf person. I know a very elderly HOH person and he is not interested in learning to sign. I can't drive somewhere to find deaf people to communicate with. My family does not want to become part of the deaf community. My sons are teens. My daughter is grown. My husband has chubby arthritic fingers that have a hard time forming letters such as M, N and R. While I've studied online, it is hard to attend a formal class when I don't drive and there is no place locally for my family to attend a class together (or any class at all for my youngest son). I am an expressive person and I'm sure I could learn ASL, but with whom? I talk perfectly. I need them to sign to ME and no one does. My oldest child, my daughter, has been working on it, but she is grown and has her own life, she can't go around translating for her mother.

We are currently looking into cochlear implants (my doctor thinks I am a candidate) and that is how I stumbled upon this site. I was totally floored and shocked to see that if I get a cochlear implant, the deaf world which I would like to find a way to embrace someday will REJECT me for having an implant? That makes me want to cry. I had no idea there would be such a perception or lack of understanding by other people who can't hear. That they do not consider themselves disabled I think is wonderful for THEM, but I'm used to being ME and it isn't the same being a deaf me and being a hearing me.

I don't really understand the discussion about deafness not being a disability. For me, it is a disability. It keeps me from doing millions of things that I used to be able to do. I used to be a very active parent, an excellent employee, a fun wife and volunteered in the community to an extreme degree (we do shelter dog rescue) and our family is extremely musical and I enjoyed singing, listening to music to an extreme degree. To say that deafness disrupted my life is a huge understatement. Meniere's disease ruined my life. I have found ways to still participate in life, but it is a pale, wan existance compared to what I used to enjoy....my usefulness has diminished to "unsuccessful housewife" down from a woman who juggled a career, a family AND major volunteering. The conversations never have depth....I can't hear my music.....I can barely communicate with anyone.....and so many of the things I enjoyed (movies, parties, my volunteer work on the phone, talk radio, concerts, etc) are things that would be so difficult now, it would just give me a headache to even try to enjoy or participate. I get migraines from lip reading longer than two or three hours and i'm good at it but still can't follow conversations except one-on-one only and I get things wrong and people think I'm kind of "slow" now instead of "smart" like I used to be. I'm really sick of this and I've only been this deaf about a year.

I'm currently debating CI and will be getting the CAT scan in the next couple days/weeks as my surgery is tenatively scheduled for January 13th. I will be having a ET shunt performed at that time and since the mastoid bone will already be getting exposed it seemed logical to bring up CI for discussion. We are not sure we can financially swing it but we are thinking we see a way clear. We have actually been a very financially stressed and poor family so this would be a tremendous stretch for us even if we get most of it covered as we think we might. I have a lot of concerns (that is why I discovered this forum) mostly about support afterward (my insurance will change and I'm going to lose my awesome doctor in about a year) and I'm also very nervous about being plunged into final deafness by the surgery itself (they will be working on the side with my residual hearing, which isn't much, but without it my lip reading goes from probably 70 percent to 30 percent or so). But I'm so upset about losing music enjoyment, I'm worried that anything less than "real" hearing is going to be a disapointment. Or that I will hear music less than I do now.

I'm really a very sad person about all this but can't talk to my family about it, they are still kind of in shock still from me going from this capable, busy, helpful person to the dependent and sad being that I am today. I don't think anyone who hasn't had this happen to them could possibly understand.

But I'm also wondering now how the decision to have a cochlear implant would effect me. I've thought of joining the deaf culture in some sort of active way and wonder now how to proceed. But I want to participate in my OLD world with my OLD lifelong friends and talk to my hubby whose fingers can't make M and R and N. In my non-driving life on our farm, I don't usually see anyone except my husband and sons. So it seems like in my case a CI is a valid option for me to consider.

Thanks for listening. It was good to get this off my chest.

So I'm caught between a life that is depressing me and

I do feel like I'd like to have more time talking to late-deafened adults regarding their feelings because I am extremely isolated, living on a farm, unable to drive or use the phone and frankly a little agorophobic because of my vertigo issues.

Thank you for listening to my long tale of sadness.
 
I know exactly what your taking about I was born into a deaf family as the only hearing one, I had to have speech therapy as I learned to talk with a deaf accent from my parents and siblings. At 18 I started to lose my hearing and now at 40 Im profoundly deaf. My B/F told me that my speech had deteriorated a lot in the last 2 years I knew it had as people couildnt understand me when I spoke to them in shops etc. My daughter is profoundly deaf and uses her voice with hearing friends but we use sign mostly these days. I can remember thinking when I was about 12 thank goodness I dont sound like my mother and sisters ha well now I guess I do.
 
Hi! I'm Steve.

I am 42 and hoh. I've been hoh for several years and my hearing is getting worse. I have been trying to learn ASL for a few years, but I am met with alot of resistance from those around me. However, I will not give up. I don't understand why they all can't just leave me alone about h.a. I think ASL and the deaf culture is so beautiful and to me it is a positive thing. I don't know what it is like being or growing up completely deaf, but I grew up beside some very good friends that were deaf and they taught me to have alot of respect for the deaf. They are deffinently not disabled and I really can't see where all the negativity comes from. I would love to have more deaf and hoh friends and I know they are here where I live in Jasper, Alabama, but I can't find any. So far I am loving this web site.
 
DeafRaptor said:
I don't know if any of you have seen my previous posts, but don't "kick" me out for being born with hearing loss versus starting to lose it later in life. :) I wanted to give people an update on myself and I find that there has been a significant amount of change to where I notice a, not insignificant, connection with "late-deafened". That is why I thought this thread would be the perfect one to post in.

When I was about six years old, my parents were told that I had bilateral mixed mild to severe hearing loss, so I was given hearing aids and mainstreamed and that was that. I didn't know what caused it, what areas of my ear were not working, or what my prognosis was. Over time, my hearing declined some (I don't know how much at the time as they never told me), but they made adjustments to my hearing aids and I tried to live my life as normal as I could. Jump forward 22 years to last month. My hearing loss dropped an average of 27 decibels and is now at moderately severe to completely deaf in the higher frequencies. That wouldn't be so bad, but I recently learned there was more. My hearing loss is congenital (not a big surprise, but now I know), progressive, and the problem with my ear is not the outer or middle ear, but the nerve.

Apparently, as my auditory nerve has continued to degenerate, it has been getting more and more sensitive. I've always thought there were a handful of people who had grating voices or things that made annoying sounds, but it's gotten worse over time, specifically in the last six months. Now I cannot stand stand being in my office (a quiet office is around 60 db) or having a conversation (a normal conversation is around 60 to 70 db) while wearing hearing aids. After I complained about some of the noises at work, the group that handles environmental safety recently tested the frequencies in my office and determined that it is in the 50+ db range (within normal range). So here are some of the examples of things that is 50 or more decibels that I cannot stand to hear with my hearing aids: walkmans, radios, TVs, typewriters/keyboards, alarm clocks/timers, garbage disposals, refrigerators, air conditioners, vacuum cleaners, lawn mowers, motorcycles, street traffic, car horns, subways, offices, restaurants, and any form of musical concerts (all things I have checked and know I cannot stand right now).

What that means is, while usually someone in my hearing range would still receive a lot of benefit from hearing aids and be able to function "normally" in the "hearing" world, I cannot use my hearing aids (or the phone without hearing aids) as there are too many everyday sounds I cannot tolerate. Before, I had hearing loss and was able to use hearing aids (with adjustments here and there), and now it is a huge change to not be able to use them at all. Sometimes I feel like it must be all in my head (made up/imaginary) and that I am letting down my "hearing" counterparts by not relying on hearing aids to understand them. My audi told me that it is hyperacusis and, while there are some treatments like 'pink noise', it only helps a fraction of people and doesn't completely return them to their previous levels of sound sensitivity, and it will get worse as my nerve degenerates. I had made peace with my hearing loss and was fine with my decision to not use hearing aids (I had planned a slow change to not using them anymore) when it was my choice, but now it feels like it was ripped away from me and I feel unsure if I am ready for this.


PS: Not hearing-related, but I also recently learned that I have scoliosis (xray confirmed), disequilibrium (VNG testing confirmed), and nystagmus (VNG testing confirmed). That makes me feel better now that my suspicions have been confirmed and people cannot just say that I slouch (I tried not to), am clumsy (I always thought it was more than that), or not paying attention (it was not a conscious choice). And now I can do something about them. I guess various issues like these are not to be unexpected being a premie twin.
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Did you have an ENT who confirmed all that in the bolded? I haven't seen anyone but an audi for years, and have been wondering if I should see an ENT to see if they can figure out anything to actually confirm whether my loss was oto-toxic (as I believe), or congenital (maybe not likely, since my hearing loss became obvious in my early 30's - but possible, I guess), and what the future might hold, etc.

Could you PM me with the name of your ENT, if it's someone you like who is local in the No. VA area? Thanks.
 
To:savingdogs,
When listening to your story you could have almost written my story. I lost all of my hearing overnight this last May. I have been on disability for another health problem for 6 years. Now with this there would be no way for me to do the job I was at.
So like you I was thrown into a world of the unknown. I was in the hospital for over 30 days. I leftt deaf and they had nothing for me on how to deal with or get help.
I also had to give up driving. I'm totally deaf but it's not quiet at all. I have a loud humming roar and firecrackers popping everyday 24/7. I can accept being deaf but I can not get a grasp on the brutal loud noises that are always with me. Doctor says hearing loss is permenant as is the noises. No help offered.
I miss my job. I was very good at my job. Won customer service awards very frequently. Now nothing. I spend most days laying on the couch since I never sleep at night. I have very few friends that want to take the time to talkmto me.
Life kind of sucks right now. I'm legally able to drive my car but when I get to where I'm going I'm not safe to walk alone. I fall a lot.
So as you can see I can relate to all your going through. If you need to talk send a private message. Hope all gets better soon.
 
lilybear said:
...The Department of Education here is really retarded when it comes to giving access to resources for Deaf people.

So basically I've been lip-reading for the past 2 months every day for 8 hours a day in a teaching environment. The lack of energy, feeling constantly like a broken person and lack of support made me think many times of just choosing another career path or applying for welfare and abandoning the fight...

...It made me think though... Maybe I should go into Deaf rights advocacy because there is certainly a lot of work to be done in this area...
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Ugh, inexcusable (the fire drill is a great example of where they clearly AREN'T accessible to the deaf/hh)! Like you I have thought about changing careers (I've also thought about going into Deaf Advocacy- I still am considering it!) or abandoning the fight, since the effort needed to work in some areas in the hearing world makes it feel like the goal is inachieveable! It's good that you have such good friends around you to help you through the tough times!
 
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