DeafRaptor
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Adjustment to late onset deafness
- Thread starter jillio
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I too recently attended my first ALDAcon ... absoultely highly recommed it for anyone who is new to hearing loss or experiencing changes. I was originally diagnosed in the mid 90s and recently diagnosed with a major drop (my loss is progressive). I learned more in 4 days and met some amazing people. Definitely one of my best decisions ...
RachelRene
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Most days, I'm alright with my deafness. I've accepted it, I have spent the last year grieving the change in my hearing, and am mostly alright.
But every now and then... Like I just found out that my favorite artist has a new album coming out. She has many, and I have every single one, including several bootlegs and recordings you can't get anywhere else. I have been to 9 concerts, in 4 states and 2 countries. I even insisted on going when she played in my town when I was 6. 5 months pregnant (J loved it!
And I suddenly realized I hadn't listened to her in a long time.
I still love music, I just hear it differently. The songs I like are different, and it's more of an all-body experience now. I *feel* it. But this is an indie folk artist. Not a lot of bass. Most of the songs are live recordings... and I can't hear it anymore. If it's a song I know and love, I hear it in my head, it's like phantom hearing, but new stuff? Can't make it out at all.
For some reason, that took me by surprise... I forgot, for a minute, that I wouldn't be able to listen the way I always did. And it made me a little sad.
But every now and then... Like I just found out that my favorite artist has a new album coming out. She has many, and I have every single one, including several bootlegs and recordings you can't get anywhere else. I have been to 9 concerts, in 4 states and 2 countries. I even insisted on going when she played in my town when I was 6. 5 months pregnant (J loved it!
And I suddenly realized I hadn't listened to her in a long time.I still love music, I just hear it differently. The songs I like are different, and it's more of an all-body experience now. I *feel* it. But this is an indie folk artist. Not a lot of bass. Most of the songs are live recordings... and I can't hear it anymore. If it's a song I know and love, I hear it in my head, it's like phantom hearing, but new stuff? Can't make it out at all.
For some reason, that took me by surprise... I forgot, for a minute, that I wouldn't be able to listen the way I always did. And it made me a little sad.
Jazzberry
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@ savingdogs
I'm sorry you are having a very difficult adjustment. Just a few suggestions/comments
* Set up your profile to accept PMs. It's a little intimidating to send someone who wrote a long beautiful post just a brief comment or two publicly. You might get more helpful advice if people could send it to you privately. I almost didn't post.
* You have two issues, obviously. Hearing loss AND balance issues. It might pay to find a forum or yahoo group for people with meniere's online.
* I really don't think most people who are deaf will reject you for getting a cochlear implant. There are mean, unreasonable people in every group but they are usually a minority. There are people who are culturally deaf that also use CI or hearing aids.
* If you can get a good webcam, there are many people you can sign with online. There's a thread at this forum for example for people who are looking for others to practice ASL with.
* From what I've seen, most people are not in favor of making up "home signs" -- but if your husband has athritis, I think that justifies an exception! I suggest making up your own home signs for the problematic letters or borrowing some from other sign languages. Maybe your husband would have better luck with how the British sign the r, m and n letters. You seem extremely resourceful and I'm sure you could find resources online for BSL and other sign languages, and use those SLs for ideas.
* It definitely has to suck that you can't do the things you use to do.
** Someone here at the forum recently recommended that I read a book about the brain's plasticity.
I did and it's an interesting subject. I would consider doing research to see how likely it is that you can regain some of your balance abilities by just using your eyes and learning to ignore the wacked out signals from your vestibular system. The book I read indicated that adult brains are still plastic and that there are techniques that can work. IIRC, it did mention a case history of someone with balance issues but it did focus more on people who had incurred strokes. However, while it did list sources at the end of the book by chapter, there were no traditional footnotes -- so you may want to start off researching this with another book or at pubmed (the govt's center for biomedical literature).
** Consider this an opportunity to develop new interests and hobbies.
I'm sorry you are having a very difficult adjustment. Just a few suggestions/comments
* Set up your profile to accept PMs. It's a little intimidating to send someone who wrote a long beautiful post just a brief comment or two publicly. You might get more helpful advice if people could send it to you privately. I almost didn't post.
* You have two issues, obviously. Hearing loss AND balance issues. It might pay to find a forum or yahoo group for people with meniere's online.
* I really don't think most people who are deaf will reject you for getting a cochlear implant. There are mean, unreasonable people in every group but they are usually a minority. There are people who are culturally deaf that also use CI or hearing aids.
* If you can get a good webcam, there are many people you can sign with online. There's a thread at this forum for example for people who are looking for others to practice ASL with.
* From what I've seen, most people are not in favor of making up "home signs" -- but if your husband has athritis, I think that justifies an exception! I suggest making up your own home signs for the problematic letters or borrowing some from other sign languages. Maybe your husband would have better luck with how the British sign the r, m and n letters. You seem extremely resourceful and I'm sure you could find resources online for BSL and other sign languages, and use those SLs for ideas.
* It definitely has to suck that you can't do the things you use to do.
** Someone here at the forum recently recommended that I read a book about the brain's plasticity.
I did and it's an interesting subject. I would consider doing research to see how likely it is that you can regain some of your balance abilities by just using your eyes and learning to ignore the wacked out signals from your vestibular system. The book I read indicated that adult brains are still plastic and that there are techniques that can work. IIRC, it did mention a case history of someone with balance issues but it did focus more on people who had incurred strokes. However, while it did list sources at the end of the book by chapter, there were no traditional footnotes -- so you may want to start off researching this with another book or at pubmed (the govt's center for biomedical literature).
** Consider this an opportunity to develop new interests and hobbies.
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Catwoman
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Sudden onset deafness
I lost my hearing in my left ear due to an operation to clean out an infection. The ear specialist said he had to move the bones, and I therefore am profoundly deaf in my left ear. I also have constant tinnitus in that ear. My right ear has severe to profound loss due to several ear infections throughout my life. Anyways, I am still having problems adjusting to not being able to hear where sounds are coming from and I find it very frustrating to communicate with people. They will say, "Turn up your hearing aid!" and it drives me crazy!!! I can lip-read a little and I know ASL, enough to communicate anyways. I live in a small town where there is no support for the hearing impaired at all, and I would like to be able to talk to others who know what I am going through. I am from Terrace, B.C., Canada. Thank you for the opportunity to finally find some people who understand!!
Jennifer Filby
I lost my hearing in my left ear due to an operation to clean out an infection. The ear specialist said he had to move the bones, and I therefore am profoundly deaf in my left ear. I also have constant tinnitus in that ear. My right ear has severe to profound loss due to several ear infections throughout my life. Anyways, I am still having problems adjusting to not being able to hear where sounds are coming from and I find it very frustrating to communicate with people. They will say, "Turn up your hearing aid!" and it drives me crazy!!! I can lip-read a little and I know ASL, enough to communicate anyways. I live in a small town where there is no support for the hearing impaired at all, and I would like to be able to talk to others who know what I am going through. I am from Terrace, B.C., Canada. Thank you for the opportunity to finally find some people who understand!!
Jennifer Filby
Catwoman
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P.S. Beethoven from Canada
I should add I was 39 when I lost my hearing. I am now 41 so it has only been a couple of years. Anyways, I would be interested to know if anyone suffers from vertigo as well. I learned that Nicolas Cage suffers from vertigo and I also can't hear music or sing anymore. I am new to this site, so please bear with me.
I should add I was 39 when I lost my hearing. I am now 41 so it has only been a couple of years. Anyways, I would be interested to know if anyone suffers from vertigo as well. I learned that Nicolas Cage suffers from vertigo and I also can't hear music or sing anymore. I am new to this site, so please bear with me.
azlady
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Mom lost the last of her hearing at 32 years old and I was seven when I lost all my functional hearing overnight. It took years for me to accept my deafness and to stop feeling I was sitting on a fence and not belonging anywhere. I am luckier than my mom who never master signs and still feels like she belongs nowhere.
I never thought of the issue as Shel90 expressed it but I guess I am lucky that I can sign and have deaf friends.
azlady
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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.
Definitely isn't. You forget that the deaf culture is like being in a foreign country and having to learn their customs. On top of that, you have to deal with the pyschological and social aspects of it. No, it isn't easy but it has to be done.
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queenravenclaw
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This is going to be a long post but I have time I've finished studying for midterms for the day. Spending so much time here I forgot I wanted to watch a movie and needed to wait for it downloads. Got the movie going I’m ready to start my bio.
About Me
My real names are Krystal-but call me Queenravenclaw (fave HP house). I'm 20 years old will be 21 in July. As a kid I had a lot of ear infections and I had a few surgeries to put tubes in my ears. I guess they fell out after time.
http://www.webmd.com/cold-and-flu/ear-infection/tubes-for-ear-infections.
As a child I had maybe 2-3 of these over a couple of years. From the age of 15 till now I have always had to sit in the front of the class room I strained to hear conversations and have always have had family members tell me to be quieter because I was too loud. As a HOH person I sometimes don't realize how loud I am. My voice does tend to get loud when I’m excited or upset isn't that normal? You get loud when you’re happy or really mad? I love singing at the top of my lungs. I'm lucky my hearing isn't that bad. I wish there were headphones that could adjust to each ear. In my right ear I can hear a lot better so while using a cell phone I have to take my hearing aid out of my right (bilateral HA's in both ears.-picture in signature)and if I’m on a cordless home phone I have to put it on speaker phone(people hate it) In my left ear if I have my tape recorder on at the highest volume level which is 20 I can hear it in both ears but its sooo loud in my right.(hence why I want adjustable level headphones) So I label myself as HOH. You could say I’m late deafened because it really didn’t affect me until I was sixteen. I also do have to put that having a ABI or Acciquered brain injury might have had an impact on my hearing. I was in grade 9 when I was a pedestrian and got hit. I won’t go into those details since they are not important here. I think you get the picture. I was sixteen when I started having real problems and was fitted with my first hearing aids I’m going to see a ENT next month and they may suggest another hearing aid. The audiologist at the CHS(Canadian Hearing Society) say that my hearing hasn’t changed but I said that its harder to hear some sounds and that when I’m sleeping I cant hear anything if I’m sleeping on my right side when the left ear is exposed but if im sleeping on my left ear and the right ear is exposed I immediately wake up if there is any kind of noise. So I guess you can say there has been a change. I hope I didn’t ramble to long. I’m hoping everyone can help me with dealing with family who tell me I’m too loud.
About Me
My real names are Krystal-but call me Queenravenclaw (fave HP house). I'm 20 years old will be 21 in July. As a kid I had a lot of ear infections and I had a few surgeries to put tubes in my ears. I guess they fell out after time.
http://www.webmd.com/cold-and-flu/ear-infection/tubes-for-ear-infections.
As a child I had maybe 2-3 of these over a couple of years. From the age of 15 till now I have always had to sit in the front of the class room I strained to hear conversations and have always have had family members tell me to be quieter because I was too loud. As a HOH person I sometimes don't realize how loud I am. My voice does tend to get loud when I’m excited or upset isn't that normal? You get loud when you’re happy or really mad? I love singing at the top of my lungs. I'm lucky my hearing isn't that bad. I wish there were headphones that could adjust to each ear. In my right ear I can hear a lot better so while using a cell phone I have to take my hearing aid out of my right (bilateral HA's in both ears.-picture in signature)and if I’m on a cordless home phone I have to put it on speaker phone(people hate it) In my left ear if I have my tape recorder on at the highest volume level which is 20 I can hear it in both ears but its sooo loud in my right.(hence why I want adjustable level headphones) So I label myself as HOH. You could say I’m late deafened because it really didn’t affect me until I was sixteen. I also do have to put that having a ABI or Acciquered brain injury might have had an impact on my hearing. I was in grade 9 when I was a pedestrian and got hit. I won’t go into those details since they are not important here. I think you get the picture. I was sixteen when I started having real problems and was fitted with my first hearing aids I’m going to see a ENT next month and they may suggest another hearing aid. The audiologist at the CHS(Canadian Hearing Society) say that my hearing hasn’t changed but I said that its harder to hear some sounds and that when I’m sleeping I cant hear anything if I’m sleeping on my right side when the left ear is exposed but if im sleeping on my left ear and the right ear is exposed I immediately wake up if there is any kind of noise. So I guess you can say there has been a change. I hope I didn’t ramble to long. I’m hoping everyone can help me with dealing with family who tell me I’m too loud.
ShinaKonga
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When I was 12 years old I became friends with a boy who was deaf/blind. He taught me sign language so we could communicate. We became good friends for years, until he passed away when I was fourteen.
This is only relevant because at sixteen I had sudden onset hearing loss in my left ear. (Nineteen now, by the way.) The doctor whom I went to was our small town ENT- the father of a girl I went to school with who wasn't so nice. Apparently her unkindness was genetic- he called me a liar and sent me out of his office. I was so shook up by being accused of this that I didn't pursue anything with my hearing for a long time. I wore a sound amplifier to make life a little easier, but my mother was displeased with it and I wore them under my hair secretly.
When I moved to Montana for the summer to do horse training up there, I was having difficulty focusing on my work in the arena with all the sounds around me. I went to an Audiologist up there who was also HOH. She was enraged that I had been treated so badly, and made a simple confirmation that I had damage to my cochlea.
I am in the process of locating a hearing aid for myself. Between work and school, I feel that I'm at a point that I need one. I am a sign language interviner for another deaf/blind person, but rather 'unofficially'- I knew him from high school, his mother knew I could sign and had experience with deaf/blind people, so she hired me as an aide for him.
I am nervous about getting a hearing aid, however. I received so much flack from my family when I brought up getting one this year. Nobody in the family has had hearing issues. I feel like I don't want a clear ear mold, or I feel like maybe I shouldn't get one just to keep the family drama at bay. I ride horses and do a lot of outdoor things, so I figure getting one that is colored brightly will lower my chances of loosing it altogether. And, I like purple- there's no shame to that, right? Wanting colored glasses garners no scorn, why should a HA? My glasses were purple up until I got contacts.
I worry that getting a hearing aid will be a big shock for my friends, coworkers and family- suddenly here I am wearing a contraption in my ear, and maybe even bright violet no less. So much uncertainty in this. I feel like its a big change in my life, and I can't tell if it will be for the better or not. I can only hope it will be. I am always thankful I still have the one ear working. Being HOH or Deaf altogether would throw my family through a spiral, even if I figure I'd cope okay- its not the end of the world, but difficult to cope with when it hits you all of the sudden.
And that is my rambling speech... Sorry, LOL!
This is only relevant because at sixteen I had sudden onset hearing loss in my left ear. (Nineteen now, by the way.) The doctor whom I went to was our small town ENT- the father of a girl I went to school with who wasn't so nice. Apparently her unkindness was genetic- he called me a liar and sent me out of his office. I was so shook up by being accused of this that I didn't pursue anything with my hearing for a long time. I wore a sound amplifier to make life a little easier, but my mother was displeased with it and I wore them under my hair secretly.
When I moved to Montana for the summer to do horse training up there, I was having difficulty focusing on my work in the arena with all the sounds around me. I went to an Audiologist up there who was also HOH. She was enraged that I had been treated so badly, and made a simple confirmation that I had damage to my cochlea.
I am in the process of locating a hearing aid for myself. Between work and school, I feel that I'm at a point that I need one. I am a sign language interviner for another deaf/blind person, but rather 'unofficially'- I knew him from high school, his mother knew I could sign and had experience with deaf/blind people, so she hired me as an aide for him.
I am nervous about getting a hearing aid, however. I received so much flack from my family when I brought up getting one this year. Nobody in the family has had hearing issues. I feel like I don't want a clear ear mold, or I feel like maybe I shouldn't get one just to keep the family drama at bay. I ride horses and do a lot of outdoor things, so I figure getting one that is colored brightly will lower my chances of loosing it altogether. And, I like purple- there's no shame to that, right? Wanting colored glasses garners no scorn, why should a HA? My glasses were purple up until I got contacts.
I worry that getting a hearing aid will be a big shock for my friends, coworkers and family- suddenly here I am wearing a contraption in my ear, and maybe even bright violet no less. So much uncertainty in this. I feel like its a big change in my life, and I can't tell if it will be for the better or not. I can only hope it will be. I am always thankful I still have the one ear working. Being HOH or Deaf altogether would throw my family through a spiral, even if I figure I'd cope okay- its not the end of the world, but difficult to cope with when it hits you all of the sudden.
And that is my rambling speech... Sorry, LOL!
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ShinaKonga,
You might be surprised how many people around you have hearing aids these days. HA are not nearly as taboo as they used to be. If it bothers you that others see your hearing aids, then grow you hair long. but at the end of they day, if you do not take care of yourself, you are only hurting yourself. Don't let your family act like bullies and push you around. It might benefit you to look around for deaf events and HOH events in your area. Get some friendships other than those that want to hold you back. And... Good Luck!
I have a CI, and I'm
and proud! (oh, and I wear my hair short so it's easy to see my CI!!!)
You might be surprised how many people around you have hearing aids these days. HA are not nearly as taboo as they used to be. If it bothers you that others see your hearing aids, then grow you hair long. but at the end of they day, if you do not take care of yourself, you are only hurting yourself. Don't let your family act like bullies and push you around. It might benefit you to look around for deaf events and HOH events in your area. Get some friendships other than those that want to hold you back. And... Good Luck!
I have a CI, and I'm
and proud! (oh, and I wear my hair short so it's easy to see my CI!!!)
ShinaKonga
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ShinaKonga,
You might be surprised how many people around you have hearing aids these days. HA are not nearly as taboo as they used to be. If it bothers you that others see your hearing aids, then grow you hair long. but at the end of they day, if you do not take care of yourself, you are only hurting yourself. Don't let your family act like bullies and push you around. It might benefit you to look around for deaf events and HOH events in your area. Get some friendships other than those that want to hold you back. And... Good Luck!
I have a CI, and I'm
Thank you. I certainly see a lot of people at my other job who wear HAs- I also work at the concessions counter in the local theater. On top of that, I work with a horse therapy program, and there's plenty of HOH or Deaf kids who come in to ride. (Yes, lots of jobs- ponies are expensive and so is school.)
I'm integrated into the community to an extent. I feel like I need to get into it more though- Find people somewhat like me. Hence why I joined AD today. With it only being one ear, I sometimes feel stuck between two worlds and not belonging to either.
I have long hair, but I'm on the fence about the color options I'll have. I love the idea of adding a little flash to something I'll have to wear everyday... but the people around me say otherwise. I bet you I go for it and get myself some bling, though- Life's too short to worry.
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I'd say don't be afraid to express yourself. But you are the one that has to live with whatever you choose. HAs are too expensive to change colors all the time. I'm disappointed I never got adventurous with different colors but in my defense, I was never offered any color options and did not know if I could have asked for other colors. They always gave me a light tan flesh colored HA it matched my skin = they tried to hide it on me. sigh.
queenravenclaw
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i just look terrible in pictures i dont care if people see the HA
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One way I have found to take nice portraits is to have the light source on the side and slightly in front of the subject and take the picture from slightly above the subject and have the subject look up at the camera (not stretching, but it gives the subject more energy as if they as ready to move forward and also takes up some of the chin slack for some people).
note, I am terrible at taking pictures of people, and only recently discovered this as a better way to take pictures of some people.
Starfish529
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To Deaf Doc, thank you for your post. I am a brand new member of this site. (About 15 minutes) so I have a lot of reading to do.
I related to the problems you mentioned. I found that I was walking into the path of oncoming cars suddenly! Thankfully, it was usually in a parking lot and the cars were slow moving. Trying to figure out what was happening to me, I realized that I was actually seeing the car. But my brain was not computing that it was a moving car. I believe this is because of the way my eyes and ears must work together and how my brain processes the information. In other words, simply because I didn't hear the car engine or street sounds, my brain did not compute that the car was actually moving. To protect myself, I have of course become very careful when crossing a street or a parking lot. I sort of remind myself of a young child learning to cross the street all over again! But it has worked.
I am wondering if you or anyone else that suddenly lost their hearing have had similar problems and how did you deal with them. My doctors and audiologists just look at me as if I have grown two heads when I tell them this. It seems as if no one else has ever presented a story such as mine, nor do they know how to advise me.
I also worry about what else is not computing in my brain now that I don't have the hearing input.
Any advise or suggestions are very welcome. Thank you!
I related to the problems you mentioned. I found that I was walking into the path of oncoming cars suddenly! Thankfully, it was usually in a parking lot and the cars were slow moving. Trying to figure out what was happening to me, I realized that I was actually seeing the car. But my brain was not computing that it was a moving car. I believe this is because of the way my eyes and ears must work together and how my brain processes the information. In other words, simply because I didn't hear the car engine or street sounds, my brain did not compute that the car was actually moving. To protect myself, I have of course become very careful when crossing a street or a parking lot. I sort of remind myself of a young child learning to cross the street all over again! But it has worked.
I am wondering if you or anyone else that suddenly lost their hearing have had similar problems and how did you deal with them. My doctors and audiologists just look at me as if I have grown two heads when I tell them this. It seems as if no one else has ever presented a story such as mine, nor do they know how to advise me.
I also worry about what else is not computing in my brain now that I don't have the hearing input.
Any advise or suggestions are very welcome. Thank you!
kjohns92
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I'm so glad I found this thread
Lately, I've been thinking about how hard the transition is, to go from hearing to deaf later in life. No one really hears about it, or at least no one I know of. I'm fully hearing, with one hoh friend, so I can't imagine what it would be like going through that specific change, but as I go through school ('terp training), the more I realize how few people there are to help guide the ones having the late transition from hearing to deaf. I wonder whether or not they have transitions counselors that specialize in helping ones go through the changes of hearing loss, or even late transitions from deaf to hearing(for those who make the decision to get cochlear implants). I'm thinking about possibly double-majoring, because of this.
What do y'all think?
Lately, I've been thinking about how hard the transition is, to go from hearing to deaf later in life. No one really hears about it, or at least no one I know of. I'm fully hearing, with one hoh friend, so I can't imagine what it would be like going through that specific change, but as I go through school ('terp training), the more I realize how few people there are to help guide the ones having the late transition from hearing to deaf. I wonder whether or not they have transitions counselors that specialize in helping ones go through the changes of hearing loss, or even late transitions from deaf to hearing(for those who make the decision to get cochlear implants). I'm thinking about possibly double-majoring, because of this.
What do y'all think?