Adjustment to late onset deafness

lovezebras

Active Member
I started to notice my tinnitus first, and then I noticed that I was losing my hearing. I was about 16 when that happened. I went to an ent/audi who told me to lay off the caffeine and such for the tinnitus and to deal with the hearing loss. I then went to CHEO and the audi told me as well almost the same thing and told me I didn't need hearing aids even though I was struggling a lot in school. I finally went to a diff place the summer I graduated from high school when I turned 18 and I got my first hearing aid for my right and then I just recently got a new set of hearing aids for both ears since I lost more hearing. My hearing loss is supposedly genetic and progressive and they don't know if it will get worse. I have been interested in ASL for a long time and am taking ASL 1 in the summer:)
 

shel90

Audist are not welcome
Premium Member
Reading your stories and experiences, it helped me to realized that I was lucky to be born deaf instead of going deaf later on. I cant imagine how frustrated you all must be feeling with this new change in your lives. Hang in there!
 

Bottesini

Old Deaf Ranter
Premium Member
Reading your stories and experiences, it helped me to realized that I was lucky to be born deaf instead of going deaf later on. I cant imagine how frustrated you all must be feeling with this new change in your lives. Hang in there!

I never thought about luck that way! :lol:

I keep being surprised when they complain. I am working hard to stop my tendency to snap at them, "suck it up, I have done it my whole life and it is easy!":P

Apparently it is not.
 

shel90

Audist are not welcome
Premium Member
I never thought about luck that way! :lol:

I keep being surprised when they complain. I am working hard to stop my tendency to snap at them, "suck it up, I have done it my whole life and it is easy!":P

Apparently it is not.


It would be like u and I going completely blind for life tmw...for me, I would be extremely frightened and depressed.
 

djchur

New Member
I still get some anxieties when new physicians or nurses begin to work in my unit. I think it is a little bit of ego though. I feel I have to prove my skills and professional capabilities to anyone new. That can make me feel cold and insensitive.

For new AD'ers; I lost my hearing with one semester left in nursing school. I felt devestated. I went from being near 'overconfident' to completely insecure. After a couple years, I finally got HA's and it made a good difference with my private and professional life. My insecurities with some people remain. I still get angry and spitefull when it comes to music and singing. I loved to sing, but now I will NOT do it around anybody. Also, I think I have extreme insecurities with starting a relationship with anybody. I want to go to grad school SO bad to be doctor in genetics. I make excuses every year for not applying, but I really know inside my reason.

I'm doing a nursing course and we have to do placements in hospitals etc. as part of the course. So every three months or so I have to start working in a new place with new people. The first thing I tell them is about my deafness. I tend to get different reactions from different people, some are helpful, some not. Anyway, I find it quite stressful having to explain over and over to people about my hearing, and sometimes when I tell them something like 'I can't hear in background noise' they just ignore me and carry on anyway.

I also feel that I have to prove myself more than the other nursing students, if I make a mistake I worry that someone will say it's because of my hearing, and they'll doubt my ability to be a good nurse.
 

DeafDoc1

New Member
Premium Member
Some of you know my story from previous posts, but for those who don't, here's my tale. I had a mild hearing loss that was diagnosed in college, nearly 30 years ago. Out of curiosity I took a college class in ASL and really enjoyed it. My hearing was stable for decades, until 9 months ago. I awoke one morning with moderately severe hearing loss, which progressed over 4 months to profound deafness. I use hearing aids but only for sound awareness, and have taken crash courses in ASL. I rely on an interpreter to continue working, use CART for lectures, and use a videophone or internet relay for telecommunication. I have very loud and bothersome tinnitus.

Shortly after I became Deaf my audiologist told me about ALDA, the Association of Late Deafened Adults, and I attended my first conference last fall. It was communication heaven, and an incredible opportunity to talk with dozens of people whose story was similar to mine.

I think for me there are several frustrating issues in becoming late-deafened. A big one is safety. I have a service dog (I am also quadriplegic), and while he's not a very good hearing dog, he definitely alerts to environmental sounds. At night as a female living alone, I find that I become easily frightened when he alerts. I have a security system but I fear that if someone breaks in, I have no way of knowing or of defending myself.

Another issue is with interpersonal interactions. I am frustrated that people may think I'm rude, aloof or ignoring them when I don't hear them, or when I can't lipread them well. I am also frustrated by the people who don't take the time or effort to communicate.

I am fortunate in having a wonderful support network at home and at work. Most of my office staff are learning ASL, and my family has quickly mastered texting and VP. I also think I have an advantage, having already experienced the loss of mobility from my spinal cord injury 22 years ago. I know the stages of grief, and recognize that there is life on the other side of "disability". There are still times, though, when I mourn the loss of music and easy communication.

Doug, please don't give up on your dream. Being a Geneticist is a readily achievable goal, with a lot of work and good support from your medical school. There is a need for more Deaf medical professionals, and already being a nurse gives you a tremendous advantage. Go for it!
 

Babyblue

New Member
Some of you know my story from previous posts, but for those who don't, here's my tale. I had a mild hearing loss that was diagnosed in college, nearly 30 years ago. Out of curiosity I took a college class in ASL and really enjoyed it. My hearing was stable for decades, until 9 months ago. I awoke one morning with moderately severe hearing loss, which progressed over 4 months to profound deafness. I use hearing aids but only for sound awareness, and have taken crash courses in ASL. I rely on an interpreter to continue working, use CART for lectures, and use a videophone or internet relay for telecommunication. I have very loud and bothersome tinnitus.

Shortly after I became Deaf my audiologist told me about ALDA, the Association of Late Deafened Adults, and I attended my first conference last fall. It was communication heaven, and an incredible opportunity to talk with dozens of people whose story was similar to mine.


I think for me there are several frustrating issues in becoming late-deafened. A big one is safety. I have a service dog (I am also quadriplegic), and while he's not a very good hearing dog, he definitely alerts to environmental sounds. At night as a female living alone, I find that I become easily frightened when he alerts. I have a security system but I fear that if someone breaks in, I have no way of knowing or of defending myself.

Another issue is with interpersonal interactions. I am frustrated that people may think I'm rude, aloof or ignoring them when I don't hear them, or when I can't lipread them well. I am also frustrated by the people who don't take the time or effort to communicate.

I am fortunate in having a wonderful support network at home and at work. Most of my office staff are learning ASL, and my family has quickly mastered texting and VP. I also think I have an advantage, having already experienced the loss of mobility from my spinal cord injury 22 years ago. I know the stages of grief, and recognize that there is life on the other side of "disability". There are still times, though, when I mourn the loss of music and easy communication.

Doug, please don't give up on your dream. Being a Geneticist is a readily achievable goal, with a lot of work and good support from your medical school. There is a need for more Deaf medical professionals, and already being a nurse gives you a tremendous advantage. Go for it!


Excellent posting! :gpost:


I just love inspiring post such as yours.

Wow! You have achieved more than one barriers. I am so glad you have a good strong support system. Seems like ALDA did a great deal for you.
 

DeafDoc1

New Member
Premium Member
Excellent posting! :gpost:


I just love inspiring post such as yours.

Wow! You have achieved more than one barriers. I am so glad you have a good strong support system. Seems like ALDA did a great deal for you.

Thanks, BabyBlue. Yes, ALDA was a great "find" for me at a crucial time. I highly recommend the organization. They avoid the deaf/Deaf/HOH politics and their motto for communication is "whatever works". All events are captioned, interpreted, and lots of paper and pencils handy.
 

Babyblue

New Member
Thanks, BabyBlue. Yes, ALDA was a great "find" for me at a crucial time. I highly recommend the organization. They avoid the deaf/Deaf/HOH politics and their motto for communication is "whatever works". All events are captioned, interpreted, and lots of paper and pencils handy.

Great! I happen to understand that. (whatever works) Due to a lot of latent deaf do not know sign language at that point.

Seems like a great support group for people that becomes deaf.
 

candybrowneyes

Active Member
Well I guess its my turn ;) sorry if it turns into a book, but i know you all like to read...

Last summer around July/August I had noticed that I was having some dizziness and what seemed to be a sudden loss of hearing that fluctuated from time to time. At first I really didn't think much about it, I just thought it was something that came and then would go. The last couple of weeks in August though I started getting really bad Tinnitus. It wasn't just a small ringing sound it was loud and it was so bad I couldn't sleep. During the day I was scared to drive and do my normal every day things because I couldn't balance right, my head would hurt, my hearing would go away then come back, go away then come back.
Scared out of my mind I went to the ER, I thought something was wrong with my head. They ran a number of tests, blood tests a CT. When they found nothing wrong with that stuff they ordered an MRI the following day. I went in for it and go the results back in a couple days. They called me and told me they didn't find anything tumors or anything of the sort that would explain what was going on. I asked if maybe it was related to Diabetes because it runs in my family but the doctor assured me it wasn't because they checked for that.
I was very frustrated and because my hearing was an issue I called a place to have a hearing test done. The place I had called had told me it was about a month till they could get me in for a test. I took the appointment (even though I thought it was rediculous to wait that long.) A few days had gone by and the symptoms seemed to lesson except the Tinnitus. It was driving me nuts because it was constant and it just never seemed to go away. It was like I had a whole lot of crickets chirping at night in my head all of the time.
Frantic in the morning I called my mother crying she told me to find another place that could take me. The first place I called I was in tears I'm surprised the lady could hear me. I told her what was wrong and she said they could get me in for a test within the next hour. She was appalled that the other place was going to take so long.
The Audiologist I went to see is Bill, it was his own practice and his wife Wendy was his secretary. When I came in, they both made me feel so at home. I was nervous of course but he brought me into the office and had me sit down while he took all my history down.
We started all of the tests, first he checked everything out in my ears, he said they were pretty red inside, more than he liked to see. Then he did a measurement of some sort I think it had to do with fluid in the middle ear? I really didn't understand a lot of what he was saying to me. Then came the hearing tests. Say ice cream, say ball, say sidewalk.. (i know you all know how it goes, lol) I missed a few words and repeated a few back that weren't right. And while he did the tone tests it was also hard because of the Tinnitus. The sounds were the same sounds I was hearing all of the time so it made it hard.
We finished the tests and he took a few minutes to go over everything. I knew I hadnt done very well =( He then came back and said I had a moderate-severe loss and sat me down to show me the results of the audiogram. He showed me where my hearing was, what normal was, and how much loss I had, and how much I still had left. The tears started to flow and it was hard for me to take in. It was more hard because I knew something was wrong I just didn't know what. Then he also said he wanted me to see an ENT because of the fluid test and something else, I don't remember what it was right now. So he referred me to an ENT at the University hospitals. He did tell me he recommended Hearing Instruments for both ears and took me to the other side of his office. He showed me many models and brands and showed me ones he could put on me that day.
Because my hearing was moderate-severe he handed me a small BTE aid and asked me what I thought of it. I said it was small and it looked nice. He got 2 of them and hooked them up to the computer where he started to program my audiogram into them. A little while later he put them on me and we started to tweek things. I will tell you I cried 2 times that day. Once when I knew how much hearing I had lost and once he put those on me. It was brought to my attention that my hearing had been bad before i thought i was losing my hearing as well. I was hearing so many things I hadn't heard in so long. I heard a radio he had on the whole time in his office i didn't know was on!

That was about 7 mths ago. Since then I had seen the ENT we did the tests and I have been Diagnosed with Menieres Disease in both ears. My hearing has also dropped a number of decibels since. The latest drop was in my right ear in January, 5 decibels just in that month. I have had to have an upgrade in the receiver in both aids so that the gain is greater.
This has been a very painful thing for me to deal with. While I put on a smile every day and I try to make the best of it my friends and family just do not understand what I am going through. I feel like I am caught in Limbo. The world of hearing people is no longer the same. A world where I felt comfortable starting up a conversation with a group of people, laughing and joking around with my friends and family. A world that has turned into one I can no longer understand to the best of my ability. One where no one understands me...
Trying to slowly transition my life into the Deaf community. A community that doesn't fully understand what it is like to become Deaf after having hearing your whole life.
Its a double edged sword that is hard to swallow any way you look at it.
I enjoy music more than anything in my life and knowing that some day I will not be able to hear it breaks my heart. It sounds weird but some days I wake up hoping that all of my hearing is just gone so I don't have to go through all of this hard stuff. People think because I have Hearing aids that I hear everything. And when I miss something they think I can just turn them up and all will be okay.

When I learned of my disease I enrolled into ASL and have enjoyed every minute of it as I have always thought it was a beautiful language.

Some days I can stand my life and others its tough. I am just glad I have a place like AD to come to.. I feel very blessed to have met the people I have met and the ones I continue to meet in this journey...
 

tommys

New Member
Something important

Hi everyone....i'm tommy, a new "3 Years" sudden deafness. I'm indonesian. I've introduced my self at introduction topics. But, someone suggested me to join this thread for more personal experience sharing, so...here i am.

Actually, i have something important to ask u guys. It will be nice if i can share it wih you :

1. Is there any legal rules for deafs like us to drive vehicle? I mean, are deafs like us still allowed to drive cars/motorcycle on the street and have driving license ?
2. How are we supposed to learn ASL if, let's say, nobody around us speak ASL either? To whom are we gonna use it then? I don't say it's useless, it's just, if there are no "NORMAL" person speak ASL, how do i still communicate to them then ?

That's all my first sharing trough. If i type wrong words or impressions, please forgive me.
Thanks and take care !
 

tommys

New Member
Hi candy. Your experience is similar to mine. But you're still lucky because everything that happened to you was not so suddent. I was HOH since 8 years old, so i only hear with my left ear. Untill 3 years ago, one night, i had a great fever. My hearing turned down slowly, with many ringing and buzzing noises in mid ear, just like what happened to you. And i was totally deaf in the morning, untill now.
I don't enjoy it, but i can't regret it either. But not like the others who learn ASL so quickly, I prefer learn "MOUTH" first. That's because when i was still "half" normal, HOH, i learn people's talk trough "MOUTH" too. Even i used to watch TV on mute.
Yes, i like to learn ASL too, but in my country, it's not easy to find place/community that teachs ASL. If they are, they asked me to pay just to learn ASL, which the amount is not suitable for me. So, here i am. Joining this community, with hopes i can learn ASL better manually.

Bydway, i suggest u to try the accupunture method. It's very useful and no pain. It doesn't cost u much too. because accupunture relates to neuro system, things that broken on us. I've tried it, and it gave me progress.

So, that's my suggestion, and hopes we can make friend. Take care !
 
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November Gypsy

New Member
Hi candy. Your experience is similar to mine. But you're still lucky because everything that happened to you was not so suddent. I was HOH since 8 years old, so i only hear with my left ear. Untill 3 years ago, one night, i had a great fever. My hearing turned down slowly, with many ringing and buzzing noises in mid ear, just like what happened to you. And i was totally deaf in the morning, untill now.
I don't enjoy it, but i can't regret it either. But not like the others who learn ASL so quickly, I prefer learn "MOUTH" first. That's because when i was still "half" normal, HOH, i learn people's talk trough "MOUTH" too. Even i used to watch TV on mute.
Yes, i like to learn ASL too, but in my country, it's not easy to find place/community that teachs ASL. If they are, they asked me to pay just to learn ASL, which the amount is not suitable for me. So, here i am. Joining this community, with hopes i can learn ASL better manually.

Bydway, i suggest u to try the accupunture method. It's very useful and no pain. It doesn't cost u much too. because accupunture relates to neuro system, things that broken on us. I've tried it, and it gave me progress.

So, that's my suggestion, and hopes we can make friend. Take care !

Hey Tommy. Just wanted to say hi and let you know that I know it must have been very scary to go deaf all at once like that. Like Candy, my hearing loss has been slower. I do a lot of mouth watching too and I hope you get a chance to learn ASL...I'm just learning it. I didn't know accupunture could do anything for your ears...that's very interesting...
 

saywhatkid

Huked on fonix werx!
Premium Member
Candy and I have discussed our similarities before, (except she is waaaayyy cuter than I am) and our love of music that was stripped away. My experience with Meniere's began around 1993. I was deafened overnight in my right ear in 1988 from an auto-immune disorder. The Meniere's was sneaky. I noticed a strange sound when I moved my head quickly. I realized I could hear low rumbling sounds better than I ever had, like I had a small amp in my head. Then came the swift loss of hearing, across the board. When people spoke, it was like they had a Kazoo for a voice. I received a phone call during this time, and could not make out a word the man said. I went to my brother, and told him to help me get appt with ENT. From there, I was tested, then referred to University of Minnesota. I met Dr. Samuel Levine and his staff. They helped me feel comfortable, and I was given a series of hearing tests: the vacuum test for fluid, tone test (all tones sounded like the tinnitus) and word recognition. They told me I needed an MRI, and they also took me to a blood lab for about 10 vials of blood. Asked me lots of stuff. Did the MRI. After all this, they had me back for the final results. I heard the words "Meniere's Disease" for the first time. Also, the dreaded "We don't know much about this disease" but that I would need Dyazide for life. The reason it was more difficult to diagnose me was my lack of vertigo. And, as the years have gone by, I have become more HOH. I am now profound right/moderate-severe left. I have been stable since taking the Dyazide, without much more loss. I have had the prejudices from hearing world: the insults, frustrations sent my way, the quizzical looks from old friends that my hearing can change in an hour. And I have felt the prejudices from the Deaf world: hearie, not life long Deaf, is not fluent ASL. I am where I am from being part of both worlds. I regret the loss of music more than the loss of regular talking conversations. I would not have become involved with the world of the Deaf/HOH without having gone through this. I too felt the deep shame and depression of losing my hearing, and being forced to adapt. Just playing the hand I was dealt, I always say.
 

tommys

New Member
6th sense for the deaf ?

Hi everyone...

i wonder if anyone of you ever feel like....after being deaf ( Specially a previous hearing one ), you feel that your sense become more sensitive....:hmm: ? Because i do. For instance, i can't hear, but i know that someone's knocking the door, or the phone ringing. Or when you drive vehicle, you know that someone's going to pass you by. Moreover, sometime i can tell if someone's lying or not.

I don't know, maybe because i lost my hearing sense, than my other sense become more active maybe ? What do you think guys ?

O by the way, is any of you can share opinion about my previous post ? About deafs legal rules for driving vehicle ? Are we still allowed to drive and have license ? I really like to know about it.

Thanx all
 

DeafDoc1

New Member
Premium Member
In the US there is no law prohibiting Deaf from driving, so long as they pass the requirements for all other drivers (vision testing, behind the wheel, written test etc). Shortly after I lost my hearing I renewed my license with only the vision screening.

Years ago, before they became standard equipment, deaf were required to have dual outside mirrors.

Frankly, I think I'm a safer driver now, since I'm less distracted by the cell phone, radio, chit-chat, and so forth.
 

November Gypsy

New Member
Hi everyone...

i wonder if anyone of you ever feel like....after being deaf ( Specially a previous hearing one ), you feel that your sense become more sensitive....:hmm: ? Because i do. For instance, i can't hear, but i know that someone's knocking the door, or the phone ringing. Or when you drive vehicle, you know that someone's going to pass you by. Moreover, sometime i can tell if someone's lying or not.

I don't know, maybe because i lost my hearing sense, than my other sense become more active maybe ? What do you think guys ?

O by the way, is any of you can share opinion about my previous post ? About deafs legal rules for driving vehicle ? Are we still allowed to drive and have license ? I really like to know about it.

Thanx all



I believe that, as humans, we were made to change with our circumstances. People like you and I have lost a sense we used to have, so we make up for it in other ways. A keener sense of awareness about our environment, an innate knowledge about when the energy in the room has changed from just one person to two people. It makes sense. Deaf people have been surviving and thriving for thousands of years because we were made with the ability to survive, even though we don't have all the equipment others have. I don't know, by the way, about driving...was wondering about that myself recently.
 

djchur

New Member
You get more sensitive to vibrations when you can't hear. I can tell when someone is about to enter the room at home, because I can feel the vibrations of their feet. I know when my dog is growling because I can feel the vibrations going all the way up his lead. I think hearing people feel it too, but they don't notice because they don't need to.
 
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