Adjustment to late onset deafness - Page 25

SerendipityG3A · 04-24-2010, 07:02 PM

I'm not sure if I'm adjusting or rebelling. I keep losing my hearing so I can no longer play my musical instruments of choice since I can't tell if I'm playing them in tune. I can't hear conversations when more than one other person is involved, and my family seems to have given up signing altogether. I spend most of my time here alone on my computer since I don't rely on my hearing in this environment. I tried to associate with some deaf (probably with a capital D), but they were very rude to me and made me feel like an outcast. I've had HA's for years, but if they're loud enough for me to hear, they're too loud to tolerate. I prefer the silence. I guess that's where I am now.

**KristinaB** · 04-24-2010, 08:09 PM

Quote:

Originally Posted by SerendipityG3A

I'm not sure if I'm adjusting or rebelling. I keep losing my hearing so I can no longer play my musical instruments of choice since I can't tell if I'm playing them in tune. I can't hear conversations when more than one other person is involved, and my family seems to have given up signing altogether. I spend most of my time here alone on my computer since I don't rely on my hearing in this environment. I tried to associate with some deaf (probably with a capital D), but they were very rude to me and made me feel like an outcast. I've had HA's for years, but if they're loud enough for me to hear, they're too loud to tolerate. I prefer the silence. I guess that's where I am now.

I live in my room with the computer. I do a lot outside of the room since I have a lot of obligations, but, mostly I am quietly in my room. Some musical instruments don't have to be re-tuned often. A piano is very easy to play if you have a hearing loss. Maybe that's just me, I've been playing the piano since I was 4.

springtime · 05-06-2010, 11:58 AM

I just got my HA on today. I posted in the HA forum that it sounds weird and I guess I'll have to get used to it. On the other hand, I stopped at Wendy's on the way home to grab lunch and had no problem ordering at the drive-thru. Usually, I can't really understand what they are saying in those.

But, I guess I'll have to get used to this, it is just weird.

**KristinaB** · 05-07-2010, 09:00 PM

Quote:

Originally Posted by springtime

I just got my HA on today. I posted in the HA forum that it sounds weird and I guess I'll have to get used to it. On the other hand, I stopped at Wendy's on the way home to grab lunch and had no problem ordering at the drive-thru. Usually, I can't really understand what they are saying in those.

But, I guess I'll have to get used to this, it is just weird.

It is an adjustment. Should take a few weeks to really get used to all the different sounds and clarity that you may not be used to. The one thing that really stands out for me when I got my HA's a while back was hearing the toilet flush. That was something else. I had never in my life heard it before and here I was at age 38 hearing it for the first time.

**sallylou** · 05-07-2010, 09:17 PM

I had a dream in which I was signing. Apparently, ASL immersion is working for me. In the dream, though, I was signing to a hearing person who didn't understand me. What does this say about my adjustment? Is my subconscious showing me that I'm shut out of the hearing world? Weird, huh?

Rubiegem8280 · 05-12-2010, 11:58 AM

Wow, I am so glad I found this site today. I just learned this morning that I have cochlear otoschlorosis and have lost a good deal more of my hearing. I started losing (but didn't yet know it) my last semester of nursing school as well. I was finishing my BSN and lost all my confidence in my clinical skills that year, very similar to the explinations above. But I got married right out of school and pregnant soon after and had my daughter, a bad marriage and circumstances were as they were so work got put off and my hearing wasn't a pressing issue. I worked some after she was born for a bit before I got sick but It wasn't till my daughter was 2 that I got my hearing tested because my family was concerned with all my "huh?" and "what?" in conversations. And of course they were right. But it was only on the moderate loss borderline and my other health concerns were worse so my audiologist and I just dealth with hearing aids and a wait and see stance. I wasn't healthy enough to do nursing and my daughter's autism was moderatly severe and I was now a single mom so I was focused there with full time toting her to therapies and interventions and speech so I was backburnered. Till a few weeks ago when my mom was caught in a conversation with her sister talking about my hearing again. We were all discussing me and how bad it had gotten and I asked her what she meant and she told me I must have noticed how I was missing so much now and it needed to be checked again and I had no idea. I saw my ENT this morning and he told me it is Cochlear Otoschlorosis and I need a specialist out of state and I am completely lost. I am very new to the idea that I may be going deaf. I have a few friends in the deaf community and began learning ASL from friends at a young age, though I am very limited. I started teaching and learning with my daughter because of her autism as well. I guess I am not sure what I feel at this point........ shock maybe?

ceelynncee · 05-30-2010, 07:17 PM

I have congenital hearing loss. My loss was explained to me as bilateral cookie bite loss. The profiles of my audio-grams match almost perfectly. At mid range shows profound loss in both ears. I hear thunder...I hear sirens...anything in between is iffy. That includes most all speech and that is where my frustration lies. I seem to be losing whatever ability I had to discern speech. I don't know if I'm losing whatever hearing I had or what. I haven't had a hearing check up in 20 years. I have had 2 sets of HAs but they didn't work for me. Everything I could hear was too load and what I couldn't hear (speech) was mushy. I get angry. It pisses me off when my family,who knows about my hearing issues,won't make adjustments to communicate with me better and won't help me to communicate better when I'm out in public. Now I'm using this forum as a vent. Pitiful,huh? (Where's the "pull out your hair" emoticon?)

**sallylou** · 05-30-2010, 08:56 PM

Ceelyncee, that's what this thread is for. Vent away. You've moved from denial to anger. Congrats! You'll find acceptance and peace during your journey. Hang in there!

Have you considered learning ASL? It's helped me a lot! I don't know where you are so I can't make specific recommendations. You may want to check out the thread about learning ASL resources. You may tell your location and someone may be able to give you more specific help.

HAs have been a big disappointment to me, too. The sounds are too loud (called recruitment) and the speech is distorted.

ceelynncee · 05-30-2010, 09:08 PM

Quote:

Originally Posted by sallylou

Ceelyncee, that's what this thread is for. Vent away. You've moved from denial to anger. Congrats! You'll find acceptance and peace during your journey. Hang in there!

Have you considered learning ASL? It's helped me a lot! I don't know where you are so I can't make specific recommendations. You may want to check out the thread about learning ASL resources. You may tell your location and someone may be able to give you more specific help.

HAs have been a big disappointment to me, too. The sounds are too loud (called recruitment) and the speech is distorted.

I'm scared too. I've started to lose clear speech myself. I'll say something and catch myself mispronouncing sounds. This is scary for me (terrifying actually). My response to this so far has been to curtail speaking,thus,curtail interaction with others. I've painted myself into a box and I don't know how to get out.

**KristinaB** · 05-30-2010, 10:09 PM

Quote:

Originally Posted by ceelynncee

I'm scared too. I've started to lose clear speech myself. I'll say something and catch myself mispronouncing sounds. This is scary for me (terrifying actually). My response to this so far has been to curtail speaking,thus,curtail interaction with others. I've painted myself into a box and I don't know how to get out.

After 4 years of dealing with total hearing loss I am also having problems with speech. I forget how a words is pronounced or forget how to sound out the letters. It is very frustrating. I went back and pulled out all of my daughters lessons from her speech therapy and my mother's papers from her diction classes and am going through those and having either my mother or mostly my daughter help me if I need it. Mother isn't helping much these days as she has dementia. Daughter is working on her speech with me as she has really regressed and people don't understand her anymore.

**Bottesini** · 05-30-2010, 10:42 PM

Quote:

Originally Posted by ceelynncee

I'm scared too. I've started to lose clear speech myself. I'll say something and catch myself mispronouncing sounds. This is scary for me (terrifying actually). My response to this so far has been to curtail speaking,thus,curtail interaction with others. I've painted myself into a box and I don't know how to get out.

You might want to check with a neurologist for some other problem if you can hear your mispronunciation.

**TXgolfer** · 05-30-2010, 10:46 PM

Quote:

Originally Posted by Bottesini

You might want to check with a neurologist for some other problem if you can hear your mispronunciation.

Huh? Not being rude

What do you mean? I am curious

ceelynncee · 05-30-2010, 10:51 PM

Quote:

Originally Posted by Bottesini

You might want to check with a neurologist for some other problem if you can hear your mispronunciation.

I don't hear it as much as I feel it. I can tell if I'm enunciating correctly,it's a feeling. But I believe that my mispronunciation stems from my deafness not a neurological issue. My deafness has advanced. I have no brain issues whatsoever.

**Bottesini** · 05-30-2010, 10:56 PM

Quote:

Originally Posted by TXgolfer

Huh? Not being rude

What do you mean? I am curious

Wondering if there is not some physiological problem if she mispronounces words if she is able to hear them and tell that she is mispronouncing them.

**TXgolfer** · 05-30-2010, 11:15 PM

Quote:

Originally Posted by Bottesini

Wondering if there is not some physiological problem if she mispronounces words if she is able to hear them and tell that she is mispronouncing them.

That is what I am confused about.....I haven't heard this before..... I am at 90-95 dbs in the left and of course I have nothing on the right (labyrinthectomy) But I can still here myself a little. I hear myself very well with my HA. Can others not hear themselves at this level of loss? I am serious here btw.....Not trying to mess with people.

**Bottesini** · 05-30-2010, 11:19 PM

Quote:

Originally Posted by TXgolfer

That is what I am confused about.....I haven't heard this before..... I am at 90-95 dbs in the left and of course I have nothing on the right (labyrinthectomy) But I can still here myself a little. I hear myself very well with my HA. Can others not hear themselves at this level of loss? I am serious here btw.....Not trying to mess with people.

You mean you can hear yourself speaking clearly and know what it sounds like?

ceelynncee · 05-30-2010, 11:24 PM

Quote:

Originally Posted by TXgolfer

That is what I am confused about.....I haven't heard this before..... I am at 90-95 dbs in the left and of course I have nothing on the right (labyrinthectomy) But I can still here myself a little. I hear myself very well with my HA. Can others not hear themselves at this level of loss? I am serious here btw.....Not trying to mess with people.

I can hear myself to a certain extent but best way for me to describe is by saying "feel". I can "feel" myself mispronouncing sounds. It can get very frustrating,I will attempt to say the sounds correctly until I get them right. It's almost like a roar in my voice that interrupts certain sounds. ARRRR! That's not right,but I don't have a better way to describe it. Poo!

**TXgolfer** · 05-30-2010, 11:24 PM

Quote:

Originally Posted by Bottesini

You mean you can hear yourself speaking clearly and know what it sounds like?

I wouldn't say clearly.....but yeah I can hear myself enough to tell.....What I can't tell is how loudly I am speaking. I feel like I am yelling and people say I am whispering. When my hearing first started going sometimes I could ONLY hear myself...nothing else.

Not to be too graphic but that was especially true after activities like lifting weights,doing push ups and having "relations"

ceelynncee · 05-30-2010, 11:28 PM

Quote:

Originally Posted by TXgolfer

I wouldn't say clearly.....but yeah I can hear myself enough to tell.....What I can't tell is how loudly I am speaking. I feel like I am yelling and people say I am whispering. When my hearing first started going sometimes I could ONLY hear myself...nothing else.

Not to be too graphic but that was especially true after activities like lifting weights,doing push ups and having "relations"

Hey,that used to be me. I used to be able to hear myself speak and that was cool. Now I can't hear myself and I mangle sounds. It sucks.

SerendipityG3A · 05-30-2010, 11:48 PM

I don't hear myself when I speak, but I can still catch myself mispronouncing things because I have experience being able to hear and speaking correctly for a substantial percentage of my life. I recognise when I skip sounds that I haven't heard for the longest. For example, I notice that I say, "Hood we hake a huddle?" instead of "Should we take a shuttle?" I don't hear it, but I notice it because I realise that my mouth has made no effort to make those particular sounds. I don't think this is rooted in a neurological condition. I think it's merely caused by a lack of behavioural reinforcement in the form of repeated exposure to the sounds of these words being pronounced properly relative to our awareness of and ability to reproduce those sounds.

Forgive me if my sleep deprivation is evident in my post.

ceelynncee · 05-30-2010, 11:51 PM

Quote:

Originally Posted by SerendipityG3A

I don't hear myself when I speak, but I can still catch myself mispronouncing things because I have experience being able to hear and speaking correctly for a substantial percentage of my life. I recognise when I skip sounds that I haven't heard for the longest. For example, I notice that I say, "Hood we hake a huddle?" instead of "Should we take a shuttle?" I don't hear it, but I notice it because I realise that my mouth has made no effort to make those particular sounds. I don't think this is rooted in a neurological condition. I think it's merely caused by a lack of behavioural reinforcement in the form of repeated exposure to the sounds of these words being pronounced properly relative to our awareness of and ability to reproduce those sounds.

Forgive me if my sleep deprivation is evident in my post.

That is a great example of what I'm trying to say. Thank you.

CJB · 05-31-2010, 01:58 AM

Quote:

Originally Posted by ceelynncee

I can hear myself to a certain extent but best way for me to describe is by saying "feel". I can "feel" myself mispronouncing sounds. It can get very frustrating,I will attempt to say the sounds correctly until I get them right. It's almost like a roar in my voice that interrupts certain sounds. ARRRR! That's not right,but I don't have a better way to describe it. Poo!

Makes perfect sense to me. Even though I can hear myself, I can also feel how my tongue touches the roof of my mouth, and in a very noisy situation where I can't hear myself, I can still feel how my tongue rolled off the roof of my mouth and can tell from that if I said a word right or wrong.

**Bottesini** · 05-31-2010, 08:56 AM

Quote:

Originally Posted by TXgolfer

I wouldn't say clearly.....but yeah I can hear myself enough to tell.....What I can't tell is how loudly I am speaking. I feel like I am yelling and people say I am whispering. When my hearing first started going sometimes I could ONLY hear myself...nothing else.

Not to be too graphic but that was especially true after activities like lifting weights,doing push ups and having "relations"

Interesting. I have damaged auditory nerves and I can't understand speech.

But the thing that happened to me to make my speech more incomprehensible to others is a damaged facial nerve on the left side. Besides contributing to my unique good looks, it affects my lip and tongue on the left side.

Hence my suggestion that if she hears her own mispronunciations, she should , in my opinion, see a doctor.

**KristinaB** · 05-31-2010, 09:11 AM

I have recently seen a neurologist regarding this issue of mispronouncing words or "forgetting" how letter combinations sound. I was told that it was a normal problem in people who lose their hearing later in life. Not just adults, but also children. He said that even though I had some hearing for my 43 years that I did, it will slowly slack off and become more of a problem. He ran all kinds of tests, and I have no neurological problems or dysfunctions.

**Bottesini** · 05-31-2010, 09:14 AM

Quote:

Originally Posted by KristinaB

I have recently seen a neurologist regarding this issue of mispronouncing words or "forgetting" how letter combinations sound. I was told that it was a normal problem in people who lose their hearing later in life. Not just adults, but also children. He said that even though I had some hearing for my 43 years that I did, it will slowly slack off and become more of a problem. He ran all kinds of tests, and I have no neurological problems or dysfunctions.

Right, but you can't hear your speech. The person I suggested a doctor to, could actually hear her mispronunciations.

Therefore, deafness is not causing that for her.

**KristinaB** · 05-31-2010, 09:16 AM

Quote:

Originally Posted by Bottesini

Right, but you can't hear your speech. The person I suggested a doctor to, could actually hear her mispronunciations.

Therefore, deafness is not causing that for her.

True - sorry for being brainless this morning.

**Bottesini** · 05-31-2010, 09:17 AM

Quote:

Originally Posted by KristinaB

True - sorry for being brainless this morning.

You are not brainless!

SerendipityG3A · 05-31-2010, 09:36 AM

Quote:

Originally Posted by Bottesini

Right, but you can't hear your speech. The person I suggested a doctor to, could actually hear her mispronunciations.

Therefore, deafness is not causing that for her.

If that person is ceelynncee, I think she "catches" herself not by hearing, but by noticing her motor movements in her mouth as she speaks, the feeling of how the air flows through the oral architecture, and noticing that her speech movements feel like they're becoming lazy due to a lack of auditory confirmation, not in spite of it. Technically, all these changes do take place in the brain, but I think in this case it's a direct result of her inability to hear her own speech. At least that's what I noticed in myself.

**TXgolfer** · 05-31-2010, 01:06 PM

Quote:

Originally Posted by Bottesini

Interesting. I have damaged auditory nerves and I can't understand speech.

But the thing that happened to me to make my speech more incomprehensible to others is a damaged facial nerve on the left side. Besides contributing to my unique good looks, it affects my lip and tongue on the left side.

Hence my suggestion that if she hears her own mispronunciations, she should , in my opinion, see a doctor.

Oh.....I may have come off the wrong way.....When you said that, I was asking for selfish reasons......Was wondering if my Dr's missed something.

I agree she should see a Dr

**Bottesini** · 05-31-2010, 01:14 PM

Quote:

Originally Posted by TXgolfer

Oh.....I may have come off the wrong way.....When you said that I was asking for selfish reasons......Was wondering if my Dr's missed something.

I agree she shouls see a Dr

What?????

I never said you asked for selfish reasons!!!!

I am a nice person, and I don't know who said that.

05-07-2010, 09:17 PM	#725 (permalink)
sallylou Potterhead and Janeite Join Date: Jun 2009 Location: My own private Idaho Posts: 6,653	I had a dream in which I was signing. Apparently, ASL immersion is working for me. In the dream, though, I was signing to a hearing person who didn't understand me. What does this say about my adjustment? Is my subconscious showing me that I'm shut out of the hearing world? Weird, huh? __________________

05-30-2010, 08:56 PM	#728 (permalink)
sallylou Potterhead and Janeite Join Date: Jun 2009 Location: My own private Idaho Posts: 6,653	Ceelyncee, that's what this thread is for. Vent away. You've moved from denial to anger. Congrats! You'll find acceptance and peace during your journey. Hang in there! Have you considered learning ASL? It's helped me a lot! I don't know where you are so I can't make specific recommendations. You may want to check out the thread about learning ASL resources. You may tell your location and someone may be able to give you more specific help. HAs have been a big disappointment to me, too. The sounds are too loud (called recruitment) and the speech is distorted. __________________

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04-24-2010, 07:02 PM	#721 (permalink)
SerendipityG3A Registered User Join Date: Jul 2009 Location: Washington/Oregon Posts: 98	I'm not sure if I'm adjusting or rebelling. I keep losing my hearing so I can no longer play my musical instruments of choice since I can't tell if I'm playing them in tune. I can't hear conversations when more than one other person is involved, and my family seems to have given up signing altogether. I spend most of my time here alone on my computer since I don't rely on my hearing in this environment. I tried to associate with some deaf (probably with a capital D), but they were very rude to me and made me feel like an outcast. I've had HA's for years, but if they're loud enough for me to hear, they're too loud to tolerate. I prefer the silence. I guess that's where I am now.

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05-06-2010, 11:58 AM	#723 (permalink)
springtime Registered User Join Date: Mar 2010 Posts: 80	I just got my HA on today. I posted in the HA forum that it sounds weird and I guess I'll have to get used to it. On the other hand, I stopped at Wendy's on the way home to grab lunch and had no problem ordering at the drive-thru. Usually, I can't really understand what they are saying in those. But, I guess I'll have to get used to this, it is just weird.

05-12-2010, 11:58 AM	#726 (permalink)
Rubiegem8280 Registered User Join Date: May 2010 Location: New England Posts: 146	Wow, I am so glad I found this site today. I just learned this morning that I have cochlear otoschlorosis and have lost a good deal more of my hearing. I started losing (but didn't yet know it) my last semester of nursing school as well. I was finishing my BSN and lost all my confidence in my clinical skills that year, very similar to the explinations above. But I got married right out of school and pregnant soon after and had my daughter, a bad marriage and circumstances were as they were so work got put off and my hearing wasn't a pressing issue. I worked some after she was born for a bit before I got sick but It wasn't till my daughter was 2 that I got my hearing tested because my family was concerned with all my "huh?" and "what?" in conversations. And of course they were right. But it was only on the moderate loss borderline and my other health concerns were worse so my audiologist and I just dealth with hearing aids and a wait and see stance. I wasn't healthy enough to do nursing and my daughter's autism was moderatly severe and I was now a single mom so I was focused there with full time toting her to therapies and interventions and speech so I was backburnered. Till a few weeks ago when my mom was caught in a conversation with her sister talking about my hearing again. We were all discussing me and how bad it had gotten and I asked her what she meant and she told me I must have noticed how I was missing so much now and it needed to be checked again and I had no idea. I saw my ENT this morning and he told me it is Cochlear Otoschlorosis and I need a specialist out of state and I am completely lost. I am very new to the idea that I may be going deaf. I have a few friends in the deaf community and began learning ASL from friends at a young age, though I am very limited. I started teaching and learning with my daughter because of her autism as well. I guess I am not sure what I feel at this point........ shock maybe?

05-30-2010, 07:17 PM	#727 (permalink)
ceelynncee Registered User Join Date: May 2010 Posts: 50	I have congenital hearing loss. My loss was explained to me as bilateral cookie bite loss. The profiles of my audio-grams match almost perfectly. At mid range shows profound loss in both ears. I hear thunder...I hear sirens...anything in between is iffy. That includes most all speech and that is where my frustration lies. I seem to be losing whatever ability I had to discern speech. I don't know if I'm losing whatever hearing I had or what. I haven't had a hearing check up in 20 years. I have had 2 sets of HAs but they didn't work for me. Everything I could hear was too load and what I couldn't hear (speech) was mushy. I get angry. It pisses me off when my family,who knows about my hearing issues,won't make adjustments to communicate with me better and won't help me to communicate better when I'm out in public. Now I'm using this forum as a vent. Pitiful,huh? (Where's the "pull out your hair" emoticon?)

05-30-2010, 11:48 PM	#740 (permalink)
SerendipityG3A Registered User Join Date: Jul 2009 Location: Washington/Oregon Posts: 98	I don't hear myself when I speak, but I can still catch myself mispronouncing things because I have experience being able to hear and speaking correctly for a substantial percentage of my life. I recognise when I skip sounds that I haven't heard for the longest. For example, I notice that I say, "Hood we hake a huddle?" instead of "Should we take a shuttle?" I don't hear it, but I notice it because I realise that my mouth has made no effort to make those particular sounds. I don't think this is rooted in a neurological condition. I think it's merely caused by a lack of behavioural reinforcement in the form of repeated exposure to the sounds of these words being pronounced properly relative to our awareness of and ability to reproduce those sounds. Forgive me if my sleep deprivation is evident in my post.

05-31-2010, 09:11 AM	#744 (permalink)
KristinaB New SDIT Deacon Join Date: Mar 2008 Location: Land of the backstroke Posts: 13,775	I have recently seen a neurologist regarding this issue of mispronouncing words or "forgetting" how letter combinations sound. I was told that it was a normal problem in people who lose their hearing later in life. Not just adults, but also children. He said that even though I had some hearing for my 43 years that I did, it will slowly slack off and become more of a problem. He ran all kinds of tests, and I have no neurological problems or dysfunctions.