A Cure - Page 7

LuciaDisturbed · 10-27-2010, 01:43 AM

Quote:

Originally Posted by faire_jour

OMG, this is the most self-important post I have ever read

There could be an actual discussion about it. For example, Bott said that it would have to include never having experienced being deaf. I thought that was interesting point.

I don't see OB's post as an self-important one.

LuciaDisturbed · 10-27-2010, 01:44 AM

Quote:

Originally Posted by Oceanbreeze

Now did you come up with that? Especially, when I fundamentally agree with what you've done for your daughter? Self important? No. But, I've been on this forum awhile and I know many on here who are happy being deaf and would never consider a cure should one come about. Just search thru the many threads we've had on stem cells and you'll see that a lot of people wouldn't even consider it.

I have to say I wouldn't undergo a stem cell transplant either for spina bifida. I wouldn't, because, I'm happy. The individual who is happy with being deaf wouldn't go searching for a cure, either.

You're looking at this from the perspective of bettering life for your daughter and that's admirable, but many on here have lived their entire lives deaf. Cures probably don't interest them!

That's fact, FJ. You can accept or not, but that's what I've observed. Read back over this thread from the beginning and you will see what I'm saying.

It's called acceptance which is a beautiful skill to develop

I totally agree!

LuciaDisturbed · 10-27-2010, 01:46 AM

Quote:

Originally Posted by faire_jour

You are self important because you think you know me or understand anything about me or my child or life.

I don't think I would choose a cure for my child, and I certainly am not seeking one out. I was attempting to have a philosophical conversation, which clearly failed.

posts from hell · 10-27-2010, 01:50 AM

Quote:

Originally Posted by LuciaDisturbed

As a CIer, I don't think the quality of my CI and the sounds with the CI are horrendous. I enjoy music and environmental sounds greatly. Yes, sometimes there is an irritating sound sometimes (which I'm sure of course most hearing people have heard it too), but for the most part almost everything sounds great. If the sounds starts to deteriorate for me, all I have to do is make a little short trip to my CI clinic and have my MAP tweaked or get a whole new MAP. It is no big deal.

Have you been able to hear on a level of those hearing people can and compare it to a CI?

LuciaDisturbed · 10-27-2010, 02:06 AM

Quote:

Originally Posted by posts from hell

Have you been able to hear on a level of those hearing people can and compare it to a CI?

As a baby, yes. But then I caught Chicken Pox and lost most of my hearing. I retained some hearing until age 10 and then the hearing aids were useless. I was supposed to be implanted at age 11 but the deaf community where I grew up pushed my dad away from implanting me. I was angry about that and told my dad that I wanted the CI and he lied to me and said "can't afford it". Many years later I find out that it was the deaf community that pushed him away from implanting me and not because he couldn't afford it. He could afford it at the time. I told him that I wish he had me implanted at age 11 and I wish that he had ASKED ME!!! Because of that I lost many useful years that I could have had learning to listen and understand speech and learning to speak with the CI.

But as far as hearing with a CI, the sounds does NOT sound horrendous to me. I think the hearing aids I had when I was younger was much more worse-sounding than my CI ever was. My CI sounds way better than a hearing aid. But since I lost my hearing as a baby I cannot remember what it was like to have full hearing therefore I cannot compare it to a CI. I do remember having some useable hearing up to the age of maybe 8 and then it went downhill and then I was pretty much stone deaf, and that was when the audiologist brought up the CI. I really really really wish I had been implanted back then. I think I would have benefited a whole of a lot with those years I could have had from back then if I had the CI back then. I've only had my CI for four years and therefore I can hear and enjoy music,
TV, movies, detect different environmental sounds, and such things, but I still cannot understand speech without lipreading and I can hear voices but I still cannot listen to voices and understand them without lipreading. But I still feel I benefited greatly from the 4 years I've had the CI and I will continue to work on learning more sounds and working on finding a CI speech therapist to help me with my speech and listening.

All in all, I LOVE my CI!

posts from hell · 10-27-2010, 03:10 AM

Quote:

Originally Posted by LuciaDisturbed

As a baby, yes. But then I caught Chicken Pox and lost most of my hearing. I retained some hearing until age 10 and then the hearing aids were useless. I was supposed to be implanted at age 11 but the deaf community where I grew up pushed my dad away from implanting me. I was angry about that and told my dad that I wanted the CI and he lied to me and said "can't afford it". Many years later I find out that it was the deaf community that pushed him away from implanting me and not because he couldn't afford it. He could afford it at the time. I told him that I wish he had me implanted at age 11 and I wish that he had ASKED ME!!! Because of that I lost many useful years that I could have had learning to listen and understand speech and learning to speak with the CI.

But as far as hearing with a CI, the sounds does NOT sound horrendous to me. I think the hearing aids I had when I was younger was much more worse-sounding than my CI ever was. My CI sounds way better than a hearing aid. But since I lost my hearing as a baby I cannot remember what it was like to have full hearing therefore I cannot compare it to a CI. I do remember having some useable hearing up to the age of maybe 8 and then it went downhill and then I was pretty much stone deaf, and that was when the audiologist brought up the CI. I really really really wish I had been implanted back then. I think I would have benefited a whole of a lot with those years I could have had from back then if I had the CI back then. I've only had my CI for four years and therefore I can hear and enjoy music,
TV, movies, detect different environmental sounds, and such things, but I still cannot understand speech without lipreading and I can hear voices but I still cannot listen to voices and understand them without lipreading. But I still feel I benefited greatly from the 4 years I've had the CI and I will continue to work on learning more sounds and working on finding a CI speech therapist to help me with my speech and listening.

All in all, I LOVE my CI!

when I heard.... I could decipher words from speech... it was that, crystal clear.

So what I am saying.. if you were given the choice of a CI and perfect hearing... and go back and forth.. nobody would touch the CI. it's that bad.

**GrendelQ** · 10-27-2010, 03:51 AM

Quote:

Originally Posted by posts from hell

when I heard.... I could decipher words from speech... it was that, crystal clear.

So what I am saying.. if you were given the choice of a CI and perfect hearing... and go back and forth.. nobody would touch the CI. it's that bad.

NO ONE is being given that choice.

BecLak · 10-27-2010, 04:00 AM

Quote:

Originally Posted by LuciaDisturbed

I totally agree!

I totally agree too.

BecLak · 10-27-2010, 04:04 AM

Quote:

Originally Posted by GrendelQ

NO ONE is being given that choice.

The choice: To be d/Deaf; To have apparatus such as HAs or CIs; or to be cured if there ever is a cure.

**GrendelQ** · 10-27-2010, 04:13 AM

Quote:

Originally Posted by BecLak

The choice: To be d/Deaf; To have apparatus such as HAs or CIs; or to be cured if there ever is a cure.

That's very different from PFH's 2 choices: "perfect hearing" vs. CI.

BecLak · 10-27-2010, 04:30 AM

Quote:

Originally Posted by GrendelQ

That's very different from PFH's 2 choices: "perfect hearing" vs. CI.

PFH's 2 choices: "cure" vs CI. (Correct me if I'm wrong PFH

)

**GrendelQ** · 10-27-2010, 05:27 AM

Quote:

Originally Posted by BecLak

PFH's 2 choices: "cure" vs CI. (Correct me if I'm wrong PFH

)

Quote:

Originally Posted by posts from hell

.. if you were given the choice of a CI and perfect hearing... and go back and forth.. nobody would touch the CI.

1. Adding in remaining deaf as an option and 2. defining cure as "perfect hearing" each add a couple of different dimensions to the choice PFH offers.

Hohtopics · 10-27-2010, 07:59 AM

Quote:

Originally Posted by posts from hell

when I heard.... I could decipher words from speech... it was that, crystal clear.

Is your hearing THAT good?

Tousi · 10-27-2010, 08:14 AM

Quote:

Originally Posted by HHIssues

Is your hearing THAT good?

Note what he says: "when I heard...."

posts from hell · 10-27-2010, 09:21 AM

Quote:

Originally Posted by GrendelQ

NO ONE is being given that choice.

Quote:

Originally Posted by BecLak

The choice: To be d/Deaf; To have apparatus such as HAs or CIs; or to be cured if there ever is a cure.

Quote:

Originally Posted by GrendelQ

That's very different from PFH's 2 choices: "perfect hearing" vs. CI.

Quote:

Originally Posted by BecLak

PFH's 2 choices: "cure" vs CI. (Correct me if I'm wrong PFH

)

Quote:

Originally Posted by GrendelQ

1. Adding in remaining deaf as an option and 2. defining cure as "perfect hearing" each add a couple of different dimensions to the choice PFH offers.

This thread is about Cure, right? So yeah.. I would prefer to take perfect hearing over any equipment.. That is what I am saying.

So in order to have a cure, one would have to have his hearing totally restored.

The experiences in this very thread alone is sufficient to prove it. The testimonies in other threads just compounds it. The constant remapping, the hearing this and not that, the missing spots, you hear everything as one, not multiple sounds, etcetc.

We have a long way to go.

posts from hell · 10-27-2010, 09:22 AM

Quote:

Originally Posted by HHIssues

Is your hearing THAT good?

I am severely deaf. I'm going to leave it at that, just because I don't like talking to you.

(BTW: Read up again, Mr. Honors)

jillio · 10-27-2010, 09:36 AM

Quote:

Originally Posted by faire_jour

I disagree with the bolded. My daughter was born hearing and had hearing aids for 4 years. She could not understand speech with her damaged hairs cells (yes her's were damaged) plus the amplification of the hearing aid. But, the same day she was activated she began to be able to hear and understand, including having speech understanding.

She may have heard, but I doubt seriously that she understood. Understanding what you hear is a learning process, and if she had not been able to understand prior, she did not magically gain understanding through activation.

jillio · 10-27-2010, 09:42 AM

Quote:

Originally Posted by faire_jour

I saw a study that showed that early implants do change it back. I read that the brain scans of kids who were implanted young are the same as hearing kids, not deaf unimplanted kids. I'll look around for it.

Actually, on an MRI, the activation of the brain is the same no matter how it has been stimulated. The visual processing in kids takes over the aditory centers. Just because the area indicates stimulation does not necessarily mean that the stimulation is from auditory stimulus. It could be from visual stimulus, or a combination of the two.

jillio · 10-27-2010, 09:43 AM

Quote:

Originally Posted by HHIssues

Is your hearing THAT good?

My son is severe to profound, and he can discriminate many words when he is spoken to. It doesn't have anything to do with dB levels.

BecLak · 10-27-2010, 10:36 AM

Quote:

Originally Posted by posts from hell

This thread is about Cure, right? So yeah.. I would prefer to take perfect hearing over any equipment.. That is what I am saying.

So in order to have a cure, one would have to have his hearing totally restored.

The experiences in this very thread alone is sufficient to prove it. The testimonies in other threads just compounds it. The constant remapping, the hearing this and not that, the missing spots, you hear everything as one, not multiple sounds, etcetc.

We have a long way to go.

PFH, so I did read you right. I'm glad.

That was what I was saying that you said. Glad you clarified it.

**KarissaMann05** · 10-27-2010, 11:32 AM

LuciaDisturbed -

for the clarity to those AD'ers. I would have say something but I didn't feel I want to.

souggy · 10-27-2010, 11:38 AM

Quote:

Originally Posted by jillio

My son is severe to profound, and he can discriminate many words when he is spoken to. It doesn't have anything to do with dB levels.

Audiologists are usually floored when they see my results, because I function more like someone with a moderate or mild hearing loss than someone with a severe to profound. Starting to 'fess up it's not easy to maintain that illusion though.

AlleyCat · 10-27-2010, 11:58 AM

Quote:

Originally Posted by souggy

Audiologists are usually floored when they see my results, because I function more like someone with a moderate or mild hearing loss than someone with a severe to profound. Starting to 'fess up it's not easy to maintain that illusion though.

I can so relate to that.

jillio · 10-27-2010, 12:02 PM

Quote:

Originally Posted by souggy

Audiologists are usually floored when they see my results, because I function more like someone with a moderate or mild hearing loss than someone with a severe to profound. Starting to 'fess up it's not easy to maintain that illusion though.

I've seen the same in many cases. I think that particular poster is a little mistaken on discrimination and what it involves.

green427 · 10-27-2010, 12:55 PM

Happened to me too.

I look, act, and talk like a hearing person, so when I went to an audi for an eval once, first thing he said before the test was "I think your aid is way too powerful for you, you need something smaller, since you really are not that deaf".

After the test, he was shocked at how deaf I was.

Also, don't you all find it ironic that only a very, very small percentage of audiologists know sign language? They get annoyed at me when I ask them to repeat their mumblings......

AlleyCat · 10-27-2010, 12:58 PM

Quote:

Originally Posted by green427

Happened to me too.

I look, act, and talk like a hearing person, so when I went to an audi for an eval once, first thing he said before the test was "I think your aid is way too powerful for you, you need something smaller, since you really are not that deaf".

After the test, he was shocked at how deaf I was.

Also, don't you all find it ironic that only a very, very small percentage of audiologists know sign language? They get annoyed at me when I ask them to repeat their mumblings......

I know !!!

I have learned that the majority of people the audis work with are the elderly and have age-related loss and they don't know sign, so the audis don't learn it either. I can't exactly fault them for that.

But I do wish they'd know sign for those who don't fall in that category. I strain to understand my audi just as much as I do any other person, and it feels like it shouldn't have to be that way .. Oh well ..

jillio · 10-27-2010, 01:08 PM

Quote:

Originally Posted by green427

Happened to me too.

I look, act, and talk like a hearing person, so when I went to an audi for an eval once, first thing he said before the test was "I think your aid is way too powerful for you, you need something smaller, since you really are not that deaf".

After the test, he was shocked at how deaf I was.

Also, don't you all find it ironic that only a very, very small percentage of audiologists know sign language? They get annoyed at me when I ask them to repeat their mumblings......

I have always found that to be ironic. Personally, I think ASL classes should be a part of their course requirements for the degree.

green427 · 10-27-2010, 01:13 PM

Yeah, you are right, most clients are the elderly.

I went in for my 2nd CI eval last week, and the audi was new at all this. She was LOUD, had a fixed expression, stared but did not blink, and was a bit hard to understand. Must have that Cecil County accent. Kept talking to me while I was looking the other way. I think it was nervous loudness...and she was caught off-guard by my technical questions. Instead of saying "I don't know", there were long pauses and some gibberish in between.

She made me listen to a recording with a gravely old man's voice. I told her it was too low, she said "just keep trying".

I miss the old audi...she had 24 years experience, knew signs, and knew her shit. Too bad hospital politics pushed her out....

posts from hell · 10-27-2010, 01:16 PM

Quote:

Originally Posted by green427

Yeah, you are right, most clients are the elderly.

I went in for my 2nd CI eval last week, and the audi was new at all this. She was LOUD, had a fixed expression, stared but did not blink, and was a bit hard to understand. Must have that Cecil County accent. Kept talking to me while I was looking the other way. I think it was nervous loudness...and she was caught off-guard by my technical questions. Instead of saying "I don't know", there were long pauses and some gibberish in between.

She made me listen to a recording with a gravely old man's voice. I told her it was too low, she said "just keep trying".

I miss the old audi...she had 24 years experience, knew signs, and knew her shit. Too bad hospital politics pushed her out....

more bs to deal with, eh? Enjoying it?

LuciaDisturbed · 10-27-2010, 04:47 PM

Quote:

Originally Posted by KarissaMann05

LuciaDisturbed -

for the clarity to those AD'ers. I would have say something but I didn't feel I want to.

You're welcome!

10-27-2010, 11:32 AM	#201 (permalink)
KarissaMann05 Premium Member Join Date: May 2007 Location: Salem, Oregon Posts: 6,378	LuciaDisturbed - for the clarity to those AD'ers. I would have say something but I didn't feel I want to. __________________ "Pragmatic language is a vital social skill that enables the school-aged child to navigate their way through demanding social situations." -- R. Owens

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10-27-2010, 12:55 PM	#205 (permalink)
green427 Registered User Join Date: Oct 2010 Location: Cooch's Bridge Battlefield Posts: 1,627	Happened to me too. I look, act, and talk like a hearing person, so when I went to an audi for an eval once, first thing he said before the test was "I think your aid is way too powerful for you, you need something smaller, since you really are not that deaf". After the test, he was shocked at how deaf I was. Also, don't you all find it ironic that only a very, very small percentage of audiologists know sign language? They get annoyed at me when I ask them to repeat their mumblings......

10-27-2010, 01:13 PM	#208 (permalink)
green427 Registered User Join Date: Oct 2010 Location: Cooch's Bridge Battlefield Posts: 1,627	Yeah, you are right, most clients are the elderly. I went in for my 2nd CI eval last week, and the audi was new at all this. She was LOUD, had a fixed expression, stared but did not blink, and was a bit hard to understand. Must have that Cecil County accent. Kept talking to me while I was looking the other way. I think it was nervous loudness...and she was caught off-guard by my technical questions. Instead of saying "I don't know", there were long pauses and some gibberish in between. She made me listen to a recording with a gravely old man's voice. I told her it was too low, she said "just keep trying". I miss the old audi...she had 24 years experience, knew signs, and knew her shit. Too bad hospital politics pushed her out....