Adjustment to late onset deafness

[rachie]

Going on 5 years over here. Left stone deaf, right has been fluctuating. I do not grieve my loss. I am not angry about my loss. I am very comfortable with who I have become. With that being said, I often find myself wanting to punch others in the face. Namely my husband (hearing, no asl). He feels as though life is the same. When he realizes it is not, he turns into a raging prick. So much anger comes from this man. Why do other people feel the need to try to make us feel badly about who we are? It is more our struggle than theirs. Time to toughen up, Cupcake ...
I can't hear you when you talk with your mouth full of food
I can't hear you when you are in another room
I can't hear you when the water is running
I can't hear you if someone else is talking too
You're gonna have to deal with CC if you want to watch a movie
Get.Over.It. I HAVE.

Sorry guys ... this was kind of a Debbie Downer post. I just have nowhere else to go.

 

[Skyland]

I love your post - I feel the same way about: I can't hear you when the water is running; can't hear you if talk with your mouth full; can't hear you when you talk to me from another room etc. My ENT and audiologist finally told me stop saying "I can't hear you and do not walk into another room to ask "what you say?" She told me i need to train my family. You are not a Debbie Downer just stating the facts.
Skyland

 

[Lau2046]

Going on 5 years over here. Left stone deaf, right has been fluctuating. I do not grieve my loss. I am not angry about my loss. I am very comfortable with who I have become. With that being said, I often find myself wanting to punch others in the face. Namely my husband (hearing, no asl). He feels as though life is the same. When he realizes it is not, he turns into a raging prick. So much anger comes from this man. Why do other people feel the need to try to make us feel badly about who we are? It is more our struggle than theirs. Time to toughen up, Cupcake ...
I can't hear you when you talk with your mouth full of food
I can't hear you when you are in another room
I can't hear you when the water is running
I can't hear you if someone else is talking too
You're gonna have to deal with CC if you want to watch a movie
Get.Over.It. I HAVE.

Sorry guys ... this was kind of a Debbie Downer post. I just have nowhere else to go.

You need to tell it like it is...I have to do this at work...no captions? I'm missing it all, you'll have to fill me in. We watching a show on TV, I need captions, sorry if they annoy you; what annoys me is watching something I can't follow - it reminds of the days watching Mystery Theater on PBS without captions as a child. I loved the show, just wish I knew what everyone was saying. You need to be your own best advocate.

 

[artr]

Hi all!

In October, 2014, I experienced severe tinnitus in both ears. It is constant 24/7 and is like a high-pitched squeal. In December, I was diagnosed with high-frequency hearing loss in both ears. I get my hearing aids in February.

From what I understood, my hearing loss will only get worse. I'm currently learning ASL, just trying to build a foundation and go from there.

This just seemed to come on pretty sudden. It hasn't had much of an emotional impact on me, I guess I just accepted it 'cause what else would I do?

 

[Oneof2]

My Own experience with late onset deafness

Hi Everyone. I'm new to this blogging so please bear with me. When I was 3 years old I had lost my hearing in my left ear. At 14 my dad took me to Childrens Hospital to find out if anything could be done to restore my hearing in my left ear. Nothing could be done. So I decided I'd do with one ear what everyone else did with 2. When I was 27, my doctor asked me if I ever though about wearing a hearing aid in my right ear. I told him he had my left ear and my right ear confused. He told me I had a progressive loss in my right ear. I was devastated but my life went on and I still had the same attitude. I put on my first hearing aid at 27. I had a mild loss in my right ear and could still function as a hearing person the way I had always functioned. As life when on my attitude was okay so I've lost more hearing but I can still hear well enough to function in a hearing world. Still in denial about my hearing loss. My husband passed away in 2008 and I went to live with my sister in Iowa and for some reason my hearing in my right ear took a huge dive and the audiologists could not even get a reading. I've always been a very social person; however, when I got to the point where I could not hear at all in a social group because my loss was too great and the background noises drowning out everyone's voices, I hit bottom because now I'm isolated from any social groups. I had no choice but to face reality. I looked for a deaf group here in Urbandale Iowa but couldn't find any. So even though my hearing loss was gradual, the final blow of losing enough hearing in the speech range in my only hearing ear caused me to go from being able to socialize to not being able to socialize. How do I find a social group in an area that has no social group for deaf and hoh? The loneliness is terrible and depressing. I will appreciate all suggestions. Thanks for listening.

 

[Bottesini]

Hi Everyone. I'm new to this blogging so please bear with me. When I was 3 years old I had lost my hearing in my left ear. At 14 my dad took me to Childrens Hospital to find out if anything could be done to restore my hearing in my left ear. Nothing could be done. So I decided I'd do with one ear what everyone else did with 2. When I was 27, my doctor asked me if I ever though about wearing a hearing aid in my right ear. I told him he had my left ear and my right ear confused. He told me I had a progressive loss in my right ear. I was devastated but my life went on and I still had the same attitude. I put on my first hearing aid at 27. I had a mild loss in my right ear and could still function as a hearing person the way I had always functioned. As life when on my attitude was okay so I've lost more hearing but I can still hear well enough to function in a hearing world. Still in denial about my hearing loss. My husband passed away in 2008 and I went to live with my sister in Iowa and for some reason my hearing in my right ear took a huge dive and the audiologists could not even get a reading. I've always been a very social person; however, when I got to the point where I could not hear at all in a social group because my loss was too great and the background noises drowning out everyone's voices, I hit bottom because now I'm isolated from any social groups. I had no choice but to face reality. I looked for a deaf group here in Urbandale Iowa but couldn't find any. So even though my hearing loss was gradual, the final blow of losing enough hearing in the speech range in my only hearing ear caused me to go from being able to socialize to not being able to socialize. How do I find a social group in an area that has no social group for deaf and hoh? The loneliness is terrible and depressing. I will appreciate all suggestions. Thanks for listening.

Deaf Action Center, 2525 East Euclid Avenue, Des Moines, IA 50317
Deaf Service2525 East Euclid Avenue, Des Moines, IA 50317(515) 266-5105

You can check this out. You can take ASL classes there, and they can give you all kinds of assistance. Good luck.

 

[Oneof2]

There are some devices available

new to AD, just found this post...
hi all! I am a late-deafened woman, about to re-enter the workforce. I have some anxiety about doing job interviews. What do I say "by the way, I am hard-of-hearing... etc... (I am learning to speak up in different settings to get people to face me, or keep their hands away from their mouths when speaking, etc..). One of the jobs includes taking notes at meetings... are their options for someone who has a hard time hearing (I miss words, sometimes, even with HAs).

Does anyone have some thoughts, advice, tips about this topic?

I don't know how much of a loss you have; however, my own loss is profound and there are some devices that can be used for meeting environments. I don't know if you will be able to use them or not but you might ask your audiologist about them. I think Oticon might have something for meetings. What works for me is when I'm meeting someone for the first time who is a hearing person, I say something like, I have a hearing disability and in order to understand what you are saying I need you to enunciate and I need to see your mouth. I also let them know they don't have to raise their voices or yell. I'm just straight forward with people and most often than not most people will be happy to comply. There are always those who won't so don't be upset by them. Just be yourself and be confident. Good luck with your job interviews.

 

[InfernoRaven]

I am a LD my issues started when I was 20 but some could claim they started sooner than that I have always had issues hearing people some people thought it was selective or focus hearing I could read a book so intensely I couldn't hear anything around me. However when the Vertigo and Tinnitus started that is when I went and saw an ENT who informed me I had significant hearing loss and I have Meniere's disease. I figure it is probably only going to get worse as in the past year I have lost more of my hearing. I am also in ASL classes with a deaf instructor, unfortunately I am not exactly the number one pupil but I am by no means the worst one there. Fingerspelling is slow and I feel the teacher has a slight problem understanding my signing because I am a lefty (mirrored) signer

 

[deafcanuck]

Hi I'm a 51 year old male from Ontario Canada. After using hearing aids for several years, I've gone completely deaf. I've been referred to London Ontario to see about cochlear implants but from what I understand the waiting period is anywhere from 1-3 years. I also suffer from SEVERE tinnitus. I'm unable to work as my job requires communicating with clients. Feeling isolated and sometimes desperate. Difficult time coping. I'd appreciate anyone else in a similar situation sharing their story as I could use a little inspiration. I'm not sure how much more of this extreme tinnitus I can stand. At times I feel like I'm losing it and ready to take drastic measures. Please, if anyone can help me, i'd really appreciate it.

 

[drphil]

I am not sure I can help you re: London location/Cochlear Implants.

My experience here in Toronto was much different than yours. I became bilateral deaf on December 20, 2006. Got referred to Sunnybrook by ENT St Michaels January/07. The audi appointment-Feb/07. Advised by her-suitable candidate for CI. After a series of tests in June/07. I saw the surgeon on June 20/07 advising the operation would be July 12/07.
The externals were activated in August/07. The 4 weeks is the usually time for your skull to heal.
I had sensorineural loss for almost 50 years. I was 70 when the above happened. I don't have tinnitus.

I would suggest you contact the London hospital C L section forthwith for an appointment with the audi to get the process started.

Much success in your Cochlear Implant determination.

 

[deafcanuck]

Thanks so much for your reply. I was told it could be anywhere from a month to a year before I hear from them. My ENT referred me on Jan17 and I've heard nothing from London since they told me it goes to a committee for approval or some such thing. I"m glad you don't have tinnitus as mine is so bad that it's taken over every waking minute. I've read that most often implants can help reduce the tinnitus eventually. At least you can distract yourself with other noises. I sure hope they call soon, some days are just unbearable. Again, thanks for the timeline, it gives me hope. How long did it take for them to initially contact you once you were referred?

 

[deafcanuck]

How long did it take for their office to contact you initially once you were referred to them? I've been waiting since Jan.17 and so far no contact has been made. Getting discouraged.

 

[drphil]

As I recall the appointment at Sunnybrook/Toronto was made by St Michaels ENT. It was 2 weeks.

aside: at a patients meeting a couple of years ago we were informed that since 1985 Sunnybrook has examined 3000 referred adults for Cochlear Implant examination.2000 were deemed "unsuitable" - variety reasons. I was one of 1000 accepted and have benefitted-to date. However 18 didn't benefit at all.

There are only 3 centers in Ontario who do Cochlear Implants for Adults. Sunnybrook.London and Ottawa.


I understand there are only 2 for babies and children. Sick Kids/Toronto and one in Ottawa.

OHIP/Assisted Devices Programme cover the entire cost for 3 years-Cochlear Implants. I understand mine was $55,000.00 almost 8 years ago.

Try to contact/phone the co ordinator of the Cochlear Implant section as to scheduling of you for the first step- audi review.

Again much success.

 

[deafcanuck]

I just read a review from a recent patient for the london clinic. He got an appointment 8 months after referral and then they called him 2 weeks before his appointment to reschedule 3 months after that. Eleven months in all for an initial consultation. The post was dated december 14. That was devastating to read. Thanks you so much so much for your input. I feel crushed.

 

[deafcanuck]

I think I just found the answer to my question. I just saw a post from a london patient that got is initial appointment 8 months after referral and then they called him 2 weeks prior to the appointment to reschedule 3 months after that. Eleven months for an initial consult is cruel. I'm just devastated. Thanks for responding to my question, I need to lie down now. Take care sir.

 

[deafcanuck]

My apologies for posting twice.

 

[drphil]

I can well understand the long time to just get started would cause "grave concern".
I can't explain the situation in London as compared to Sunnybrook/Toronto today.

aside: I recall reading the long time for processing patients for Cochlear Implants consideration- years ago.

Wished I had better news for you.

 

[caz12]

I never thought about luck that way!

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.

you don't snap, bit blunt nothing wrong with blunt..there are some who snap on here you not one of them

 

[pinkgirl30]

Hi all I too appreciate this thread I started loosing hearing at 19 from an illness. I was encouraged to hide it and not even use hearing aids by my family (although they were recommended). i went to college, graduated, got involved with other deaf students which helped. After i graduated I did not know anyone who was deaf/hoh. So i just pretended like i was not either. i am 30 now and it is really starting to show not only in lack of understanding others speech when they are not looking at me but they do not understand me. i guess i mumble or talk funny. This has me very self conscious because I only know hearing people and I am supposed to be able to hide it you know. a few people have asked lately if i have a speech problem or a hearing problem or both.
what would you do continue to hide or be honest???????????

 

[Crickets]

Hi all I too appreciate this thread I started loosing hearing at 19 from an illness. I was encouraged to hide it and not even use hearing aids by my family (although they were recommended). i went to college, graduated, got involved with other deaf students which helped. After i graduated I did not know anyone who was deaf/hoh. So i just pretended like i was not either. i am 30 now and it is really starting to show not only in lack of understanding others speech when they are not looking at me but they do not understand me. i guess i mumble or talk funny. This has me very self conscious because I only know hearing people and I am supposed to be able to hide it you know. a few people have asked lately if i have a speech problem or a hearing problem or both.
what would you do continue to hide or be honest???????????

I've been hoh my whole life, but have only worn hearing aids for a year and a half, and unless I tell people I wear hearing aids, most people can't even tell I'm wearing them, so I don't understand why your family encouraged you to hide your hearing loss and not use hearing aids although they were recommended. That's really unfortunate. I had been told by audiologists that a hearing aid wouldn't help me much (because until recently I had hearing loss in only one ear), so that's why I didn't look into getting them earlier. Now, I actually wish I had decided to get one years ago, despite what I'd been told. You should do what's best for you and your health.

Honestly, hearing people are much more likely to "look at you funny" for misunderstanding them all the time then they are because you wear hearing aids (which, depending on what kind/style you get, people may not even be able to notice much, anyway). And, even if people do notice that you wear hearing aids, so what??? If you were told you needed glasses to help you see better, would your family have told you to not get glasses?!? There is absolutely no shame in needing/wearing hearing aids - I'm so glad that I finally got mine; I hear so much more - and more clearly, and I have to ask people to repeat themselves much less. Hearing aids have made my life better in lots of ways. I definitely recommend that you go get your hearing tested and find out whether hearing aids would help you, and if so, then try them out - you have nothing to lose and so much to gain!

Since I got my hearing aids, I was able to persuade two of my hoh relatives to get evaluated for hearing aids, and one of them began wearing them a few months ago; the other relative found out he had otosclerosis that could be corrected surgically, so he doesn't need hearing aids (but at least he hears better now because he got checked out!). Once they saw the difference hearing aids made for me, that sort of "broke the ice" and they realized they should see an audiologist, too.