A Cure - Page 22

drphil · 11-04-2010, 12:47 PM

Where is the info? Google knows! To one of the above comments - your brain waves with an Cochlear Implant-being "tested" next Tuesday -a research project at Sunnybrook/Toronto. Thanks to PFH-bring Professor SKY with me -she can keep her eye on things!

Implanted Advanced Bionics-Harmony activated Aug/07

**Bottesini** · 11-04-2010, 12:51 PM

Quote:

Originally Posted by drphil

Where is the info? Google knows! To one of the above comments - your brain waves with an Cochlear Implant-being "tested" next Tuesday -a research project at Sunnybrook/Toronto. Thanks to PFH-bring Professor SKY with me -she can keep her eye on things!

Implanted Advanced Bionics-Harmony activated Aug/07

Are you really getting your brain waves tested?

BecLak · 11-04-2010, 01:00 PM

Quote:

Originally Posted by GrendelQ

I get where you are coming from, Beclak. It just seems that you are giving a blanket "No thank you" very quickly and putting a whole lot of judgment on even the consideration of what each of these possibilities might mean for our children.

We definitely need to learn from experience and history, but we also need to consider that today's multimodal cognitive “brain training” exercises is not necessarily the same as yesterday's "monstrous speech therapy." Unless you happen to be a rat and your SLP was plying you with musical tones.

These items are from just one paper published last month, and not even as the focus of the paper, which is about the impact of profound deafness on children today. They are a couple of doctors' informed, but not sacred, projections of where efforts are going in future developments. The thread is about what we might consider cures, if anything (and cats and skunks, I know). I don't think that it makes sense to close our eyes to change or to a potential for advancement. I would never hand my husband that list and say, go for it -- plug all of into the child. But I think it is worth knowing what's being developed. Possibly even having a voice in the matter in some small way.

Whether we act on what's legitimately and safely made available to us 5 years, 10 years, 20 years in the future is up to us. Isn't it at least interesting to know what's in the works?

Grendel, Thank you. I'm glad you're getting where I'm coming from.

The intention of my 'argument' here and throughout the forum has never been to cause discord but to let people know that just because it is the latest technological or educational advancement, doesn't mean that it should be blindly accepted as the norm. eg: when hearing aids first came out, everyone was told that it was the 'cure' for deafness so every HOH or deaf child from hearing families had hearing aids slapped on them; similiar situation with CIs when they first came out.

It should be an informed choice made with all options on the table. Today, we are fortunate to have an internet society where we can 'google' information immediately and research into things for ourselves. I only pray that with the information and choices we have today, history does not repeat itself.

AlleyCat · 11-04-2010, 01:51 PM

Quote:

Originally Posted by GrendelQ

Gryphon

I'm glad that's not a skunk, as that would be one funny looking skunk if it were

But ... if you would like a skunk, er ... kitty, these girls might need help:

faire_jour · 11-04-2010, 02:26 PM

Quote:

Originally Posted by BecLak

Cochlear implants are likely to become multi-functional, combining drug-delivery (e.g., neurotrophic factors) and cell-delivery capabilities to rescue spiral ganglion cells or even generate new ones; innovations in design will allow better encoding of temporal fine structure, improving speech perception against background noise and the ability to enjoy music. Hearing conserva- tion through cochlear implantation should allow the synergistic combination of acoustical and electrical stimulation of the same ear; further technological advances will probably improve the outcome of implantation. Objective markers of brain maturation or response to complex sounds (e.g., with the use of electroencephalo- graphic measures) may guide future decisions about candidacy for cochlear implantation. Actively harnessing the brain’s computational capacity through the development of multimodal cognitive “brain training” exercises will probably further enhance outcomes. Emerging evidence suggests that auditory brain-stem implantation may be of value in children who do not have cochlear nerves.

Bolded: That's messing with someone's brain if you ask me. Zapped.

Yes, auditory brainstem implant involve surgery on the brain. That is the only part of that that does. I explained what they are doing with EEG's in a previous post. And "brain training" would be like speech therapy but focusing on learning to listen and understand, rather than production of speech.

faire_jour · 11-04-2010, 02:31 PM

Quote:

Originally Posted by BecLak

Grendel, I honour that your choices are in the best interests of your child, being a mother of 7 myself. I understand that fully. I am not discrediting your choices. My comments on the article were not a personal hit on you or your choices. My mother also thought she too was acting in my best interests as a child, but we were not given full information or options. Back then, it was indeed an experimental trend of the medical profession which, for many of us here, failed at our expense. It is true, that advancements have been made, some good, some not. I am not against medical advancements when it comes to curing sickness, disease, and life-threatening conditions. (My daughter is studying to become a doctor). I work in areas where medical help is in great need. But deafness is not in that category. It is not a sickness, disease, nor is it life-threatening.

In my opinion, these advancements for a cure for deafness do more harm to someone's pyschological state than good and because it is all new there are many risks in other ways too.

The potential positive outcomes that everyone hopes for and are told to believe in, have taken, and will take more than a life-time.

I am not against spoken language as long as the child has sign language to fall back on for a respite. Being raised oral, having started speech therapy at age 11, having used speech my whole life, I am still not (at the age of 47) able to speak without effort or strain, I still stumble over articulating words, although many may think I can speak fine, for me it is a constant struggle. Only last year, did I begin to accept myself as I was - severely deaf. Since then I began learning sign language and now it is such a relief that just be myself. Yes, I still speak but I now have a choice not to. I would much rather see people live their lives happy and healthy without the stress of going from specialist to therapist to specialist. If people choose to take trials in medical advancements, then it is their choice. I just don't want any child to have to go through what I went through. I will always stand by this - do away with 'experimental trends' especially on children.

The bolded part is exactly what CI's and other advancements are trying to avoid. One of the major goals of oral education combined with AV therapy and technology is the automaticity of spoken language.

**sallylou** · 11-04-2010, 02:50 PM

Quote:

Are you really getting your brain waves tested?

Please correct me if I'm wrong. I think that ABR testing is a part of the ENT standard operating procedure. Maybe ABR testing is what he means?

I haven't had the ENT battery of tests. It's a waste of time and money for me.

faire_jour · 11-04-2010, 02:55 PM

Quote:

Originally Posted by sallylou

Please correct me if I'm wrong. I think that ABR testing is a part of the ENT standard operating procedure. Maybe ABR testing is what he means?

I haven't had the ENT battery of tests. It's a waste of time and money for me.

Yes, an ABR measures your brainstems reaction to sound. The test I mentioned, measures your auditory cortex's reaction to sound.

11-04-2010, 02:58 PM

Quote:

Originally Posted by BecLak

My apologies RD, in that post the 'quote' function didn't work as expected.
It is a segment of quote from the article GrendelQ posted. She states the references in her quote. (you figured that already).

thanks for the clearification.

BecLak · 11-04-2010, 10:13 PM

Quote:

Originally Posted by faire_jour

Yes, auditory brainstem implant involve surgery on the brain. That is the only part of that that does. I explained what they are doing with EEG's in a previous post. And "brain training" would be like speech therapy but focusing on learning to listen and understand, rather than production of speech.

FJ, I said in my previous post, that I read the article and comprehended everything just fine. I know what all these procedures are and do. Stop talking as if I don't know what I am talking about, I'm not stupid.

Brain training is brain therapy. It is the 'therapy' that is a repeat of history, whether it be oral, brain, or whatever.

Electrical stimulation is unnatural interference whichever way you want to look at it.

As for the EEG's that is still testing, guinea-pig material.

BecLak · 11-04-2010, 10:16 PM

Quote:

Originally Posted by faire_jour

The bolded part is exactly what CI's and other advancements are trying to avoid. One of the major goals of oral education combined with AV therapy and technology is the automaticity of spoken language.

The Deaf already have their own language why try to change it?

faire_jour · 11-04-2010, 10:17 PM

Quote:

Originally Posted by BecLak

FJ, I said in my previous post, that I read the article and comprehended everything just fine. I know what all these procedures are and do. Stop talking as if I don't know what I am talking about, I'm not stupid.

Brain training is brain therapy. It is the 'therapy' that is a repeat of history, whether it be oral, brain, or whatever.

Electrical stimulation is unnatural interference whichever way you want to look at it.

As for the EEG's that is still testing, guinea-pig material.

I never spoke in a disrespectful way, and I certainly never implied or stated that you were stupid.

So, you are against all therapy and testing, including routine audiological testing (ABR's)?

kokonut · 11-04-2010, 10:29 PM

Welcome back, FJ.

BecLak · 11-04-2010, 10:40 PM

Quote:

Originally Posted by faire_jour

I never spoke in a disrespectful way, and I certainly never implied or stated that you were stupid.

So, you are against all therapy and testing, including routine audiological testing (ABR's)?

If hearing tests were continued on a constant basis then yes, I would deem even hearing tests unnecessary. Unless you are someone that has no other life other than in hospitals and clinics. I say take time to smell the flowers.

drphil · 11-04-2010, 10:40 PM

The "project" at Sunnybrook/Toronto will be testing how my brain is reacting to sound measuring "brain waves" using with my Implant. About 3 hours of time. I also participated in the "Ears validation study"-how one perceives speech sounds with the new Implant.How ones identify words in isolation and in simples sentences. It also tested for the ability to identify syllables, stress in sentences, vowels and consonants.

Implanted Advanced Bionics-Harmony activated Aug/07

faire_jour · 11-04-2010, 10:42 PM

Quote:

Originally Posted by BecLak

If hearing tests were continued on a constant basis then yes, I would deem even hearing tests unnecessary. Unless you are someone that has no other life other than in hospitals and clinics. I say take time to smell the flowers.

No one is recommending constant testing, but an ABR (the diagnostic test for a hearing loss) involves electrodes and measuring brainwaves, two things you object to as "guinea pig"

souggy · 11-04-2010, 10:45 PM

Quote:

Originally Posted by BecLak

If hearing tests were continued on a constant basis then yes, I would deem even hearing tests unnecessary. Unless you are someone that has no other life other than in hospitals and clinics. I say take time to smell the flowers.

Huh?

You do realize in order to apply for disability tax credits, or to receive interpreters at post-secondary, a lot of them do need a recent hearing test within three to five years. Sometimes even more frequent depending on the service you are apply for.

**Beowulf** · 11-04-2010, 10:48 PM

Last week I had the standard hearing test in Hear USA for new hearing aids. Tomorrow afternoon I will get another test in the otology/neurotology department of a hospital. I have no idea what that will entail, but I will find out. No biggie I guess.

souggy · 11-04-2010, 10:50 PM

Quote:

Originally Posted by Bottesini

Are you really getting your brain waves tested?

You know...

Mom always mixed up ABR with PET. So when she told people the PET scans were inconsistent, they looked at me like there was something mentally wrong with me. I didn't find out until two months ago that what she meant was ABR, not PET. Geez, life would had been easier if she didn't screw up the terminology.

**Bottesini** · 11-04-2010, 10:53 PM

Quote:

Originally Posted by souggy

You know...

Mom always mixed up ABR with PET. So when she told people the PET scans were inconsistent, they looked at me like there was something mentally wrong with me. I didn't find out until two months ago that what she meant was ABR, not PET. Geez, life would had been easier if she didn't screw up the terminology.

rick48 · 11-04-2010, 10:54 PM

I just wanted to address two points that a few posters made. One, there is this common misconception that hearing parents of deaf children think the cochlear implant is a cure for deafness. I have never met any parent of a child with a cochlear implant who ever thought that. It makes no sense whatsoever. We know our children are deaf and will always be deaf. What the implant has done is to give our children access to sounds that they never would have been able to access without their cochlear implants and it has made their life easier. I read what Beclak writes and it is similar to others that I have read and heard before but those experiences have not been our children's experiences. My daughter has never felt tired or worn out from speaking or listening. Quite frankly and no disrespect to what she and others have experienced but it has been different for many of our kids and when we say this it is not to diminish or disrespect those experiences but to point out that being raised profoundly deaf, oral and without an implant is different from being raised deaf, oral and with an implant.

The other point someone made is that when first introduced, cochlear implants were marketed as a cure for deafness. As someone whose child was one of the first kids implanted and who was active in ensuring the rights of children to have access to cochlear implants, I can tell you that we spoke to many in the field and no one ever said or even implied that it was a cure for deafness. It just did not happen. In fact, our experience was just the opposite as our cochlear implant team at NYU downplayed what we could expect. Never were we told that it would cure deafness.

As an aside this weekend is an annual get away weekend for us and three other sets of hearing parents with cochlear implanted kids. Between us there are 6 ci kids, now young adults, 4 in college and two in grad school. They have all known each other all their lives.
Rick

AlleyCat · 11-04-2010, 11:00 PM

I think the "cure for deafness" comes to ignorance and not understanding. Here's an example: when I was a teenager, CIs first came out. It was written up in various newspaper articles. People (friends of my parents) started cutting out the articles and forked them over to my parents, and said, "Here. This'll cure your child (me)." They didn't understand. So I get where some here are coming from in saying that it was marketed as a cure, because it was what it was seen at by many. Not all, mind you.

faire_jour · 11-04-2010, 11:01 PM

Quote:

Originally Posted by AlleyCat

I think the "cure for deafness" comes to ignorance and not understanding. Here's an example: when I was a teenager, CIs first came out. It was written up in various newspaper articles. People (friends of my parents) started cutting out the articles and forked them over to my parents, and said, "Here. This'll cure your child (me)." They didn't understand. So I get where some here are coming from in saying that it was marketed as a cure, because it was what it was seen at by many. Not all, mind you.

But no one who is actually involved with or familiar with cochlear implants.

**GrendelQ** · 11-04-2010, 11:03 PM

Quote:

Originally Posted by rick48

I just wanted to address two points that a few posters made. One, there is this common misconception that hearing parents of deaf children think the cochlear implant is a cure for deafness. I have never met any parent of a child with a cochlear implant who ever thought that. It makes no sense whatsoever. We know our children are deaf and will always be deaf. What the implant has done is to give our children access to sounds that they never would have been able to access without their cochlear implants and it has made their life easier. I read what Beclak writes and it is similar to others that I have read and heard before but those experiences have not been our children's experiences. My daughter has never felt tired or worn out from speaking or listening. Quite frankly and no disrespect to what she and others have experienced but it has been different for many of our kids and when we say this it is not to diminish or disrespect those experiences but to point out that being raised profoundly deaf, oral and without an implant is different from being raised deaf, oral and with an implant.

The other point someone made is that when first introduced, cochlear implants were marketed as a cure for deafness. As someone whose child was one of the first kids implanted and who was active in ensuring the rights of children to have access to cochlear implants, I can tell you that we spoke to many in the field and no one ever said or even implied that it was a cure for deafness. It just did not happen. In fact, our experience was just the opposite as our cochlear implant team at NYU downplayed what we could expect. Never were we told that it would cure deafness.

As an aside this weekend is an annual get away weekend for us and three other sets of hearing parents with cochlear implanted kids. Between us there are 6 ci kids, now young adults, 4 in college and two in grad school. They have all known each other all their lives.
Rick

Have a wonderful weekend!

souggy · 11-04-2010, 11:10 PM

Wirelessly posted

Quote:

Originally Posted by AlleyCat

I think the "cure for deafness" comes to ignorance and not understanding. Here's an example: when I was a teenager, CIs first came out. It was written up in various newspaper articles. People (friends of my parents) started cutting out the articles and forked them over to my parents, and said, "Here. This'll cure your child (me)." They didn't understand. So I get where some here are coming from in saying that it was marketed as a cure, because it was what it was seen at by many. Not all, mind you.

I remember seeing it praised as "cure" in a small town newspaper in 2005! They were trying to do a fundraiser for a four-years old girl.

**Bottesini** · 11-04-2010, 11:12 PM

Quote:

Originally Posted by souggy

Wirelessly posted

I remember seeing it praised as "cure" in a small town newspaper in 2005! They were trying to do a fundraiser for a four-years old girl.

I am pretty certain Miss Delectable occasionally posts an article of that type still.

AlleyCat · 11-04-2010, 11:13 PM

Quote:

Originally Posted by faire_jour

But no one who is actually involved with or familiar with cochlear implants.

And that is what I said. Rick was saying "The other point someone made is that when first introduced, cochlear implants were marketed as a cure for deafness." It is how my parents' friends saw it as well, and passed that onto my parents.

faire_jour · 11-04-2010, 11:13 PM

Quote:

Originally Posted by Bottesini

I am pretty certain Miss Delectable occasionally posts an article of that type still.

Yes, there are still very uninformed people who say things like that, but audiologists and parents don't.

rick48 · 11-04-2010, 11:16 PM

Quote:

Originally Posted by AlleyCat

I think the "cure for deafness" comes to ignorance and not understanding. Here's an example: when I was a teenager, CIs first came out. It was written up in various newspaper articles. People (friends of my parents) started cutting out the articles and forked them over to my parents, and said, "Here. This'll cure your child (me)." They didn't understand. So I get where some here are coming from in saying that it was marketed as a cure, because it was what it was seen at by many. Not all, mind you.

Yes, I would agree that very often in the mainstream media it is portrayed as a cure and/or a miracle but as FJ points out that is not coming from either parents or professionals involved with cochlear implants and that is a big difference.
Rick

rick48 · 11-04-2010, 11:17 PM

Quote:

Originally Posted by GrendelQ

Have a wonderful weekend!

Oh we will!!!

11-04-2010, 10:29 PM	#643 (permalink)
kokonut Registered User Join Date: Jul 2006 Posts: 15,348	Welcome back, FJ. __________________ Before AD. After AD. "Restriction on free thought and free speech is the most dangerous of all subversions. It is the one un-American act that could most easily defeat us." -Thurgood Marshall, former Supreme Court Justice "... turns out they are telling the truth."

11-04-2010, 10:54 PM	#651 (permalink)
rick48 Banned Join Date: Oct 2006 Location: "Those four" and more still here. Posts: 1,944	I just wanted to address two points that a few posters made. One, there is this common misconception that hearing parents of deaf children think the cochlear implant is a cure for deafness. I have never met any parent of a child with a cochlear implant who ever thought that. It makes no sense whatsoever. We know our children are deaf and will always be deaf. What the implant has done is to give our children access to sounds that they never would have been able to access without their cochlear implants and it has made their life easier. I read what Beclak writes and it is similar to others that I have read and heard before but those experiences have not been our children's experiences. My daughter has never felt tired or worn out from speaking or listening. Quite frankly and no disrespect to what she and others have experienced but it has been different for many of our kids and when we say this it is not to diminish or disrespect those experiences but to point out that being raised profoundly deaf, oral and without an implant is different from being raised deaf, oral and with an implant. The other point someone made is that when first introduced, cochlear implants were marketed as a cure for deafness. As someone whose child was one of the first kids implanted and who was active in ensuring the rights of children to have access to cochlear implants, I can tell you that we spoke to many in the field and no one ever said or even implied that it was a cure for deafness. It just did not happen. In fact, our experience was just the opposite as our cochlear implant team at NYU downplayed what we could expect. Never were we told that it would cure deafness. As an aside this weekend is an annual get away weekend for us and three other sets of hearing parents with cochlear implanted kids. Between us there are 6 ci kids, now young adults, 4 in college and two in grad school. They have all known each other all their lives. Rick GrendelQ likes this.

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11-04-2010, 12:47 PM	#631 (permalink)
drphil Registered User Join Date: Jul 2010 Location: Toronto Ontario Posts: 4,117	Where is the info? Google knows! To one of the above comments - your brain waves with an Cochlear Implant-being "tested" next Tuesday -a research project at Sunnybrook/Toronto. Thanks to PFH-bring Professor SKY with me -she can keep her eye on things! Implanted Advanced Bionics-Harmony activated Aug/07

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11-04-2010, 10:40 PM	#645 (permalink)
drphil Registered User Join Date: Jul 2010 Location: Toronto Ontario Posts: 4,117	The "project" at Sunnybrook/Toronto will be testing how my brain is reacting to sound measuring "brain waves" using with my Implant. About 3 hours of time. I also participated in the "Ears validation study"-how one perceives speech sounds with the new Implant.How ones identify words in isolation and in simples sentences. It also tested for the ability to identify syllables, stress in sentences, vowels and consonants. Implanted Advanced Bionics-Harmony activated Aug/07

11-04-2010, 10:48 PM	#648 (permalink)
Beowulf Premium Member Join Date: May 2004 Posts: 10,515	Last week I had the standard hearing test in Hear USA for new hearing aids. Tomorrow afternoon I will get another test in the otology/neurotology department of a hospital. I have no idea what that will entail, but I will find out. No biggie I guess.

11-04-2010, 11:00 PM	#652 (permalink)
AlleyCat Registered User Join Date: Jun 2005 Location: In my time zone Posts: 10,823	I think the "cure for deafness" comes to ignorance and not understanding. Here's an example: when I was a teenager, CIs first came out. It was written up in various newspaper articles. People (friends of my parents) started cutting out the articles and forked them over to my parents, and said, "Here. This'll cure your child (me)." They didn't understand. So I get where some here are coming from in saying that it was marketed as a cure, because it was what it was seen at by many. Not all, mind you.