Adjustment to late onset deafness

to annie :wave:
:ty: for info!
 
Hello

I will say Hi by my prior post..

Hello All:

I have to admit I feel some trepidation posting here, since I am new and just registered; not to mention that I have had very limited exposure to the deaf community and not all of it has been positive.

A little background about myself..

I am a 32 year-old, married, late deafened adult with serious HoH in the left ear and profound HoH in the right. I was raised orally, but my best friend in college (over 10 years ago) was a manually raised profound left/right. My exposure to the Deaf community comes through him and his memory.

I am still new to the d/Deaf community, including the HoH community, since I was raised and have lived in the Hearies world for so often until just recently when I got my diagnosis of serious/profound. I get my HAs on the 14th of this month and a little anxious.

I am looking for a place (either at the Community College level or otherwise) for some ASL teaching, since all of my professionals seem to think that my hearing will deteriorate to the point sometime in the near future that it will be nessisary.

Anyhow.. that's a bit about me.. any more questions (or if I flubbed up terminology or whatever), please correct me.

--= jwwstpete
 
Hi jwwstpete! :wave: I'm a newbie, too. I'm still learning just like you.

My hearing loss is hereditary, and I've had my HA for about 2 1/2 years. The HAs are helpful in certain situations, but I was disappointed about how HAs were not a "cure all." I had unrealistic expectations and a lot of denial. A couple of years down the road, I've adjusted and I feel more comfortable with my reality.

I don't know how quickly my hearing will deteriorate or how much hearing I will have in the future. For this reason, and because I want to communicate with others, I'm going to learn ASL.

You would think that I would know more about the deaf community because I was reared in a family with deafness but that's not the case. My family was not very competent or educated, and they didn't deal well with these issues. The deaf family members just became increasingly isolated. I'm glad that I have the internet and other resources to learn the ropes!

Welcome! I look forward to sharing ideas and experience with you. :welcome:
 
I'm a DAV and in my late 50's. I have the resources, but the challenges of the public are overwhelming. Having to deal with the loss of ones hearing is devestating depending on your way of life, and the emotional attachment you have to it. I was terminated from my job, for reasons as general as " he didn't do the work as we wanted it done". They have kept my hearing aides, out of malice or at the least with disregard to me at all. Without these prosthesis, I cannot function in society as well without, as I can with them, interviews, the public, even watch the television for the news......I filed a complaint with EEOC, and here I am a year and a half later, and still, I am nowhere.... The public should consider that we don't need but, a fare shake at trying to do for ourselves.
 
Hello, I am Dan and a DAV. I lost my hearing in 1970, during some operations overseas. I am not totally deaf, but I must see the sound to actually understand what it is I barely do hear. I have tinnitus and some other physicals, but none as isolating as this one. I sometimes miss conversation, or being a part of everything, but it seems the best for all these ways. having to apologize all the time is the most disturbing though. Do you know what I mean?
 
I was born with a calcium deposit on my right eardrum. I got my first hearing aid at 7. At 10, I gave myself nerve damage in the left ear using the old stereo headphones without the hearing aid, and turned up the sound to hear in tha bad ear and blew out the good ear. Over time, I slowly lost more and more of the hearing in both ears. At 40 I got new all in the ear aids for both ears. At that point, I had an approximate loss in each ear of 60-80%. At 44, I was listening to some music while working on the computer and it was like a light switch turned off. I couldn't hear a thing. Subsequent testing and all showed that the calcium deposit in my right ear had totally "deformed" my eardrum and it no longer functions, and the left ear had also developed a clacium deposit that "deformed" the eardrum. I am totally deaf in both ears. I was fortunate in the fact that I am able to draw upon memory for sounds of musical instruments and music. That doesn't help with new stuff. I totally miss music, the sound of my hubby and my children. (at least I don't hear the teen arguments and such) I will be 46 this month, and I feel that I am adapting well. At least my speech is normal and clear. I find that I am forgetting how some words are pronounced and get frustrated at time during a conversation. Since I knew from a young age that I was losing my hearing, I paid attention and learned to read lips (very basically). It's not easy. The schools where I grew up did not have any services for a hearing impaired child. There were no services offered. My parents drove 4 hours just to get me a hearing test. (it was always great to miss school for that) I know my hearing aid when I was 10 was thrown out with the trash by the janitor. (I had removed it for PE as I was told to by the school administrators due to perspiration) The janitor thought it was parts to an old transistor radio and threw it away. That was the last hearing aid until I was 40.

One of my biggest problems is that my family still tries to talk to me without getting my attention and tries to get me to take a phone call. (We just moved to Florida and I don't have my CapTel phone yet) Chruch is also very hard, but luckily, the Pastor is working with me, and the church put up a screen with power point and a projector and I get the words to all of the songs. For the music, if it's something I don't know, they give me a copy of that as well. It helps that this was the church I went to before I moved to Missouri. Hubby and I were married there in 1993.

Well, I've rambled on and probably gave too much info, but at least you know my story.
:giggle:
 
KristinaB, what you have is called tympanosclerosis and is correctable by tympanoplasty and removing the calcium deposits.
 
Bottesini said:
KristinaB, what you have is called tympanosclerosis and is correctable by tympanoplasty and removing the calcium deposits.
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I had 3 different doctors from St. Louis University, Dept of Otolaryngology and the University of Missouri Hospital & Clinics in Columbia, MO, say that there was nothing to be done as the damage was too far gone. Vocational Rehab sent me to get it checked out and that was the diagnosis, so nothing was done. Originally, when my parents checked into it, the odds of surgery being able to help were not in my favor. But, then again, that was back in the 1970's.

Now, I have no insurance and wouldn't even be able to contimplate it. I am no longer working and am in the process of trying to apply for Medicaid. I am my mother-in-law's driver and I home school my 2 teens.

Tympanosclerosis is something I had never heard of. I will check into it some more. Thanks for the info.
 
You are welcome. I am also pretty certain that if really uncorrectable, a Baha aid will work.
 
All I know is, during the tests I heard nothing at all. At the end, they told me they had turned the microphone all the way up, opened both sides of the headsets they put on me and popped a punch ball in the microphone. People in the neighboring offices heard it, but I didn't even flinch. Where we live now, we are on a flight path for Palm Beach Internationl Airport and while the planes going over will rattle the windows and vibrate the ground, I hear nothing.

They told me that I was not a candidate for a CI and that there were no hearing aids that would work as there was not even any vibration in the ear working in my favor. I forget the actual terms the audiologist and ENT used, but I am making the best of it..

My biggest frustration is that since I was used to listening to orchestras and knew the sounds of the different instruments, I will have a song play over and over in my head. The only change is the instrument playing. It sometimes wakes me in the middle of the night. I think the worst one was the Christian song "I Surrender All" played with an oboe. I've even had "Duelling Banjo's" played with piccolo's and flutes. That was really wierd. :giggle:
 
KristinaB said:
All I know is, during the tests I heard nothing at all. At the end, they told me they had turned the microphone all the way up, opened both sides of the headsets they put on me and popped a punch ball in the microphone. People in the neighboring offices heard it, but I didn't even flinch. Where we live now, we are on a flight path for Palm Beach Internationl Airport and while the planes going over will rattle the windows and vibrate the ground, I hear nothing.

They told me that I was not a candidate for a CI and that there were no hearing aids that would work as there was not even any vibration in the ear working in my favor. I forget the actual terms the audiologist and ENT used, but I am making the best of it..

My biggest frustration is that since I was used to listening to orchestras and knew the sounds of the different instruments, I will have a song play over and over in my head. The only change is the instrument playing. It sometimes wakes me in the middle of the night. I think the worst one was the Christian song "I Surrender All" played with an oboe. I've even had "Duelling Banjo's" played with piccolo's and flutes. That was really wierd. :giggle:
Click to expand...
Baha are implanted and are specifically for conductive deafness as you have described your problem. They take sound through the bone. They have nothing to do with CI.
 
November Gypsy said:
You know what? I honestly think you are brilliant. You are absolutely correct. I feel so much of time like I have to be all cheery about the fact that I just plain can't hear even half of what I did. What's worse is when people born deaf berate you for feeling bad. I don't think anyone should wallow in self pity...but I don't understand why it's so hard for others to give late-deafened people time to grieve (talking about people in general). Anyway, I'm so glad I found this forum. It's so supportive in so many ways. I just recently started making contacts with the deaf community in my area. I'm excited but so nervous! You all give me courage that it will be alright, in fact, better then alright!
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When I was a health aid I had clients that lost their hearing later in life and some had a really hard time adjusting to wearing a HA. The children would complain that their parents or famliy member would not wear their HA ! Some clients had a hard using the kind that went in your ear as very were so small. I was able to help some clients with their HA and some wanted nothing to do with it! I never bugged my clients to wear their HA but the family did! It is hard to lose your hearing and it take time adjusting to it ,people around you need to be understanding.
 
I don't wear my HA all the time and my family understands. It's not that my HAs are uncomfortable. It's that I need a break from listening. One of the first coping skills that I adopted was allowing myself down time after I've spent a significant amount of time listening. Listening for long periods of time is exhausting. I become very fatigued.

There are two things that I wished hearies would understand. First, it doesn't matter how loud a sound is, if it's in a range that I've lost, I still can't hear it. This should be a no brainer but it eludes people. Second, it doesn't matter how much you magnify the sounds that I can hear, it's still distorted sound that I have to make sense of, which requires great concentration and effort on my part. That's why I get tired and that's why I give myself rest time.
 
Well, I'll post my story, cause being deaf suddenly is really frustrating, kind of.

Through a hereditry condition tumours grew on my hearing nerves (NF2) and I was diagnosed when I was 11 (8 years ago?)

It was planned that I would have one tumour removed to save the hearing on that side, but after the operation I couldn't hear anything out of either ear, so from that point on I was deaf.... when theoretically I should have been hard of hearing.

I have just finished college and waiting on my results. College was really weird for me, the only education I have done with any hearing loss, and not being able to speak to anyone in lessons and only really communicating with the few people I knew well - I don't know if my classmates were ill informed or whatever. I managed OK with a cochlear implant though.

I am going onto University this Autumn and I am unsure what it will be like, has anyone attended University deaf from here?

Since I went deaf it has been really hard to keep contact with my old friends as they don't really understand what deafness is about - I'm kinda stuck cause the deaf club here is small and not very good.

Ummm.. that's it :aw:
 
Hi, Simown. I lost my hearing after graduating from university, so I can't comment specifically on that. I do know that most universities provide information on accommodations (often on their websites). I recommend contacting universities that you're interested in to get more info. The most important thing is to choose a university that offers what you're interested in. Good luck! Let us know how it goes.
 
I have discussed this in depth with the university I applied for as my main one, they seem to be used to accomodating for deaf/hard of hearing students. Hopefully I will get into this one and start in October ;) I'll let you know how it goes.

I have just completed 2 years of college deaf but I absolutely hated it, so I'm hoping Uni will be an improvement.
 
:wave: sallylou and Simown,

Simown, good luck with your university! My husband deaf used notetakers when at the univesity -
 
I think that's what I am definitely going for, if not anything else. It will just make learning the information a lot easier I think.
 
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