Would you? I Would!
Stem Cell treatment for hearing loss is just around the corner for deaf Americans. I have been following that topic for some time now.
Mike McConnell over at his Kokonut Pundit post blogged about it a few days ago, revealing that a cure for deaf Americans is just a mere few years away. Korea and Mexico have already begun their trials. Already we have the first successful case of stem cell treatment as shown on Mike’s post. Mike has blogged about stem cell treatment for hearing loss in the past as well and is one of the few bloggers I know that I can expect to see up-to-date information on this topic. His post also has good discussions.
Karen Mayes shared the news on her post “Stem Cell Treatment for the hearing loss has begun” and has some good links to follow, not to mention good discussions going on over there.
Deafdude also has a blog that covers an array of topics related to Stem Cell treatment. He plans to get stem cell once it is available to him, thus you will find many posts over there. If you are one of many that are looking for a hearing cure and aim to get stem cell treatment, you should bookmark his blog to get the latest information on Stem Cell treatment. Additionally, if you have questions about stem cell treatment for hearing loss, Deafdude would like to gather up questions and he will provide answers to them in his Q & A post in the near future.
Since Stem Cell treatment for hearing loss is about restoring hearing. From what I understood, a small dose would mean small increase in hearing and that it could somehow be regulated to restore however much hearing one desires. This is what I am getting so far, and since I’m not an expert on this, I’m sure we will find out more in no time.
Questions have arisen on how will it affect deaf culture? How many prelingually deaf would actually opt for this restoration of their hearing? Is stem cell a threat to the deaf culture as Cochlear Implants have been?
Additionally, some have raised questions as to why those that typically advocate against anything to do with speaking and listening are very silent on this treatment? Does it mean they approve or are they in a shock that a cure has begun, if not in the USA, already?
Deaf people have embraced scientific technology over the years, they LOVE that technology has enabled many to function well in the world at large. They loved that technology allowed them to communicate with their hearing peers, they loved that technology has enabled them to watch TV and movies in closed captions. They didn’t raise a fuss when pagers changed the face of deaf culture. They didn’t raise a fuss when internet changed the face of deaf culture. If they loved the fact that technology improved the quality of their life, surely they’d embrace stem cell cure. It’s happening. It’s here!
To get a general idea of who would go for stem cell cure, please complete the following polls, below.
The first one asks a simple question of what category of deafness you would fall under. Deaf at birth or late in life.
This poll will give us a general idea of whether or not you would actually opt for a stem cell treatment to restore your hearing.
As someone who is hard of hearing and have been since birth, I am tickled pink with the latest outcome. It is easy to understand why those who have already heard sounds, would love to be able to hear more. It would be interesting to see what those who have been completely deaf since birth would choose.
Many people who are considering a cochlear implant, especially those who are adults, are now holding off on that and looking forward to stem cell cure.
We can surmise that many hearing parents would too, however, since it is very important for babies to grasp language as early as possible, many parents might just go for a C.I. in one ear in the interim and hope to provide their child with a stem cell cure for the other ear when a cure is readily available for their child.
Clearly those that already have a cochlear implant might have some conflicting emotions about this since once they have an implant, they can’t get stem cell. Or, maybe not? Technology is amazing and who knows, later on they might come up with a way to provide everyone with that possibility. Like I said, I’m still new to this and am not an expert. ;
For me? Nah. I think if I’m hearing sounds 24/7, I’ll be climbing the walls. How can I sleep? lol
Silence is golden for me
Mishkazena
November 10, 2009
As of 7 pm 11/9/2007 15 people voted, the majority being prelingually deaf. 40% said yes, 47% said maybe and only 13% said no.
Interesting picture so far.
MZ, yeah, well you’re not the first to bring that up. There are ear plugs, ya know.
One has to wonder how do the rest of the population sleeps? They do sleep, which is why we’re supposed to keep quiet after hours. Some people I know, need to hear the hum drum of sounds in order to fall asleep, such as leaving the TV on or the fan, or whatever.
gamaswanderings
November 10, 2009
Yeah, several of my friends require electronic devices to hum them to sleep. lol
I wouldn’t want to be able to hear sounds. However, I’m glad that people have more options than ever. I think when they improve the technology of the stem cell therapy, this will become more popular than cochlear implants.
mishkazena
November 10, 2009
I’d be a holdout for a very long time until I was sure there would be no side effects showing up years later.
Apart from that, once full hearing is turned on, I would look forward to being able to monitor noises around me and learning the different flavors and characteristics of sounds. Maybe even learn to appreciate music and nature babblings. Speech understanding? That might be expecting too much at my age–but it could possibly improve my voice quality.
Sleep? It inevitably comes when one is tired–not worried about that at all; and there are ways to muffle or mask out sounds at night.
It’d be like a new toy or the latest in electronic gadgets–something to learn about. Will it affect my Deaf identity? Pfft.
Dianrez
November 10, 2009
Dianrez, I can understand why you would want to hold out until you know more. I probably will have tons of questions before I actually go for it. To make sure that I’m not growing hairs anywhere else on my body, for one!
gamaswanderings
November 10, 2009
So far, as of 10 pm, 72 percent are prelingually deaf. And the results for opting for a stem cell cure, 42% said yes and 42% said maybe.
Is this for real?
gamaswanderings
November 10, 2009
Hi Gamas. Just a note that the way the polls are set up, there is no way to correlate between the person’s “deaf status” and desire to receive stem cell treatment. The polls actually should be combined into one, and have a long list of questions such as “I am a pre-lingually deaf person and don’t have any desire for stem cell treatment”. A little repetitious but that’s about as scientific you can get with internet polling.
Tayler
November 10, 2009
Yeah, you’re right, Tayler. I was trying to figure out how to make it work better. Your idea sounds a bit better since it tells us exactly which kind of deafies voted for what. From the looks of it the majority are prelingual and the higher numbers of those that opted for or chose maybe indicates that most are from prelingually deaf. (probably)
I do like your idea, but, It’s too late for me to change it now. Maybe someone can do their own poll and we can compare notes.
I did wanted to see how many from prelingually deaf category that would go for it or consider it. It’s not going to be a true reflection of those out there in the culturally deaf community since most do not participate in Deafread. Either that, or they are denying any participation when I asked them.
many do particpate in DVTV, however. Perhaps someone in DVTV can do their own poll and see where it goes. Would be interesting.
gamaswanderings
November 10, 2009
I am NOT a prelingually deaf person. I picked up from my deaf parebts a language that meets the universal rules of grammar (Chomsky, 1957.) I became bilingual before I was enrolled at St. Francis Xavier’s at three of age.
You have failed to develop a question: “You are a deaf child OF DEAF
PARENTS.”
Therefore, I will not vote above. Alas, some people have aready viewed and/or voted, not knowing that the the questions
To call a deaf person “prelingual” implies that you deny ASL as a real and true language.
Regretfully,
Jean Boutcher
jean boutcher
November 10, 2009
It’s a foegone conculsion those that never knew realistic hearing are not going ‘into the unknown’ those with pre-hearing experieinces and knowledge will be beating down the doors of the health services to get this treatement. IT’s still early days, I am none too sure someone deaf for 40 years can benefit by stem cell treatment. If it is possible I will take it straight away. I’ve always said I’d lose a limb to hear again, so stem cell seems a doddle !
MM
November 10, 2009
“Hearing Loss Turns Into Hearing Gain From New Stem Cell Research And Treatment” http://donmargolis.com/Home/Blog/November-2009/Hearing-Loss-Turns-Into-Hearing-Gain-From-New-Stem.aspx
neuro09
November 10, 2009
This is in response to the comment made by Ms. Jean Boutcher.
Generally speaking, children do not master the fundamentals of language until they are between one and two years old. While I could not speak for Gamas, the term “pre-lingually deaf” could be interpreted as a baby that becomes deaf before he or she masters the fundamentals of language. Certainly, babies do communicate with their parents and people around them through visuals (gestures, pointing, copying, etc.) and sounds but the linguists generally do not recognize these visuals and sounds as a full-fledged language.
Joseph Pietro Riolo
josephpietrojeungriolo@gmail.com
Public domain notice: I put all of my expressions in this post in the public domain.
Joseph Pietro Riolo
November 10, 2009
My answer is similar to other deaf people… I’d rather be able to sleep in the nights. MAYBE I’d go for stem cell treatment as long as it’d give me a FEW decibels again, putting me in moderate hearing dB range (I don’t want mild or normal hearing dB range.) Then I could wear chic tiny hearing aids. I was born deaf and I don’t know any better.
kmayes
November 10, 2009
Jean,
Getting picky, eh? Well, it’s your perogative not to vote. This is not a real scientific poll. Just a general idea to see how many deaf people born deaf would go for it. It was an assumption by some that the majority that would go for it would be those that are late deafened, or deaf children/babies of hearing parents.
gamas
November 10, 2009
I can see that your’e hyper and happy-go-lucky about this “kind of greatest” news.
I understand that your’e HOH and possibly the candidate for getting some stem cell treatment. I think it’s a pretty strong simple procedure *IF* the demographics will show how much the procedures succeed without the side effects in a long term.
For me getting the stem cell treatment, I’d be bewildered and psych-O-O-O in 24/7!
Jean – I’ll have to agree with JPR. Sorry to say it but I think you need to reduce your pride.
White Ghost
November 10, 2009
http://en.wikipedia.org/wiki/Prelingual_deafness
For the definition of prelinguially deaf… Joseph is correct. However, Jean is correct also, from what Wikipedia defines deaf children of “signing families”.
kmayes
November 10, 2009
This is very disgusting! What is wrong with you people? You should be PROUD of who you are because this is GOD’s plan. We are Deaf because he wanted us to be. There’s nothing wrong with being Deaf. I am so DAMN proud to be Deaf. I am very smart and have never faced any difficulties with my hearing loss. I hold a Master’s degree. I have a very high paid job and communication was never a problem for me. People who seek treatment for Deafness are ashamed of their identity, selfish and plain idiots for rejecting God’s plan. Parents who plant and make the decision of implanting CI in their children are plain selfish and self-centered! Children should make their own decision when they’re old enough. They end up never wearin them when they’re old enough. CI does not help children pick up language. Parents’ motivation in doing literacy is what helps them develop their language. Stop being selfish you guys and start accepting God’s plan! I am so disgusted at you all!
Disgusted!
November 10, 2009
my intention was not to get into specifics but to keep poll simple. deaf since birth, deaf later in life, etc. so….let me get back to u all on this later this afternoon. however, I am open and am encourging anyone to develop their own poll. So, please do. I will participate as well.
please keep the comments within a respectful dialogue. thanks!
Gamas
November 10, 2009
Disgusted,
You DO NOT speak for all people with hearing loss. This is no different from people with vision problems or even partial or full blindness would want adult stem cells treatment to help restore their vision. Each of us has a different background growing up with our deafness and our ability to hear, or those who acquired their deafness later on in life. Perhaps it is God’s plan that I receive adult stem cells someday soon? Who knows. Once it becomes widespread and medically acceptable then I’d be up for it.
It’s not about being ashamed but about the ability to hear the many wonderful sounds in life and the ability to communicate without the need for a HA or CI.
I talk on the phone everyday in my place of work. Even using field radios to communicate back and forth. Or attend video conferences. It would be to my *benefit* and not to your benefit in making sure some of us stay deaf because of your perceived notion of what is correct according to your “God’s plan.” I see hearing as a gift.
Next time, “Disgusted,” don’t hide behind your anonymous curtain when you want to spout these things. You go your way, and we’ll go our ways as we see fit whether it’s for us or for our children. You don’t own us.
kokonut
November 10, 2009
Correction:
It would be to my *benefit* to get this treatment and not to your benefit in making sure some of us stay deaf because of your perceived notion of what is correct according to your “God’s plan.”
kokonut
November 10, 2009
Gamas,
Thanks for the shout out.
kokonut
November 10, 2009
Also, I like to make another response here to what “Disgusted,” said.
“I am very smart and have never faced any difficulties with my hearing loss. I hold a Master’s degree. I have a very high paid job and communication was never a problem for me.”
Communication is never a problem because you depend on and require an interpreter?
For me I rely on my hearing aid for all of my communications. I’ve been quite successful so far, apparently. Though not without shortcomings, of course. I’ve no complaints and I’m thankful that I am able to hear with what left my hearing has for me. I thank God everyday for this gift. And I’ll be watching this adult stem cells development for hearing loss closely now.
kokonut
November 10, 2009
I think that God gave us free will and we all are born for a reason, does not mean we should accept our limitations. Then again, not everyone believes that God exists. For those that do, consider this: It’s like telling a parent of a child who was born with its heart outside of its body that it is God’s plan and that they should’nt consider tratment.
Gamas
November 10, 2009
I was born deaf and am getting stem cells as soon as it’s available to me. Feel free to ask me questions, I am going to have a Q and A on my blog.
Deafdude
November 10, 2009
I have a question to all of you, discuss what will happen to CI and the fate of CI companies once stem cells takes off and becomes mainstream. What will happen to those who already have a CI or two? What will their options be?
Deafdude
November 10, 2009
I would go for it but then again…I’m already acutely aware of how sounds are supposed to sound like, how words are pronounced and the likes…I don’t think this would be a simple transition for anyone who’s never heard before..
Ben Vess
November 10, 2009
Ok…I’m still at a remote location, will try to respond to most of u. I always assumed prelingually deaf to mean: born deaf. I don’t take too much stock in wiki’s definition…however, I will look into this a bit more and if no one come up with a comprehensive poll, then I will. I rather not get into specifics of whether a person uses ASL or not….but, will consider that.
I also am seeing some who are deaf, being uncomfortable w/ hearing 24/7, which is understandable. It’s the unknown that scares some people.
Some are worried about not getting any sleep, which I can relate to…I don’t get enuf as t is…
@ Mike, u’re welcome.
@ Deafdude, I would think that there might be a war of words between CI manufacturer and those that provides stem cell? CI companies stand to lose a lot of money.
Gamas
November 10, 2009
not done….accidentally hit the submit button.
what will happen to those that have CI? Not sure. We currently are told that its not available to them, But I’d like to think that eventually it will be.
I will create another poll, that is, if no one else creates it in the next 12 hours. I might possibly do it anyway depending on the context of the poll created by others.
Let’s start asking questions for Deafdude as well.
Gamas
November 10, 2009
Ben, you’re right…it is not going to be simple fo those that never heard before. One wonders if the brain will pick up after 40 years of silence?
Gamas
November 10, 2009
I meant, having heard and then lost hearing and not hearing for 40 years before trying stem cell, will the brain be able to pick up where it left off?
Gamas
November 10, 2009
Scared of the unknown? Pardon me? Please do not assume you know the reason I am not interested. For sure it’s not the fear of the unknown *scoff*
If a person is already deafened prior to the critical period of language acquisition and remain deaf for 40 years, usually the environment cues are recognized by the brain after a short period of training. However, the human speech will be too complicated for the brain to decipher.
Mishkazena
November 10, 2009
Ahh, MZ, I wasn’t referring to u. I said some may be scared of the unknown.
Anyone care to share examples of deaf adult not hearing sounds for 40 years and managed to pick up on speech and word discrimination? Can we compare that to expecting similar or better results with stem cell??
Is it even possible?
Gamas
November 10, 2009
40 yrs then implanted w/ CI….compare it to Stem cell.
sorry bear w/ me ..am using my phone here.
Gamas
November 10, 2009
IF one has been wearing AND benefitting from hearing aids prior to getting a CI or stem cell therapy, at least 40 years, I believe that it would be less of a challenge for the brain to pick up sounds, especially speech sounds, than one without hearing aids prior CI or stem cell therapy. I could be wrong. If stem cell treatment is the kind that would “slowly” generate cilia, giving the brain time to get used to the sounds, it might work in a long run?
kmayes
November 10, 2009
I would think so, kmayes. I’d be a good candidate for that procedure.
mcconnell
November 10, 2009
Can the nonhearing brain adapt to the full spectrum of sound after 10, 40, even more years?
We can only guess, pessimistically, based on incomplete data from CI people implanted at different ages, and with an instrument that itself does not give full range hearing.
I suspect that there is much unknown about the plasticity of the brain and we could be seeing some surprising things happen.
The brain itself is largely unknown–and for people whose language is fully established by whatever means may already be at an advantage when they receive normal hearing for the first time.
Or, as some here seem to think, normal hearing could come as a mishmash of unintelligible noises just as with hearing aids cranked up to full volume. It sounds that way to Deaf people with a limited range of frequencies available to them. Will it still sound that way without amplification and with a full range of frequencies? One can only wonder.
Will it cause psychological and personality probems? Somehow I don’t think so.
Will it require great effort in adaptation? Only as much as one wants to give it, and it depends on one’s personal goals.
Become fully Hearing, in ability, culture, perception and discrimination? That would likely be reaching for too much.
Be able to pick out the doorbell downstairs, a car honking a block away, a baby crying in another room? Good enough.
Trade my Deaf friends for a new set of Hearing friends? Nah, but a few more new faces would be interesting.
Dianrez
November 10, 2009
AS of 4:30 pm 11/10/2009
27 say they are prelingually deaf (which of course should mean they were born deaf and is subject to real definition)
4 born HOH, 4 hearing parent of deaf child and 2 late deafened.
Out of the above,
15 said YES, 14 said Maybe and 8 said NO.
I will create another poll to get a better idea and incorporate suggestions made by several commenters.
Perhaps differentiate those that use ASL and those that are oral?
It’s still not going to be a valid scientific poll, but gives us a better picture, maybe?
Any suggestions are welcome.
Gamas
November 10, 2009
Dianrez,
I hope Deafdude takes some of your questions and incorporate into his Q & A section at his blog site.
Like you, I probably wouldn’t trade my deaf friends for my hearing friends. I don’t think I’ll every stay completely away from the deaf community either, I am dod so, it just is impossible. But, I would gladly trade my hearing aids for the stem cell and not have to worry about batteries running out nor the moisture that accumulate around my ear mold, ugh. And, not having to worry about high frequency noise making me dizzy. When my daughter sings in a high octave, I get real dizzy, true biz! It is probably because of how my aids are. So, I am hoping for something like this and am hoping that after all questions I have are answered to my satisfaction, that I would be comfortable with the ideaf of having it done.
I am also interested in looking at many adults who have gotten CI later in life after years of silence and find out how well they did and how much they can understand sounds/words, etc. This might give us a better idea of what to expect beyond what they are capable of hearing? I dunno, we’ll find out more.
Gamas
November 10, 2009
[...] | Tags: 2nd poll, deaf, hard of hearing, Poll, stem cell cure poll, Take Two | As a result of my previous post on stem cell which included a poll, several commenters made suggestions on improving the poll. No [...]
Take Two – A New Poll on Stem Cell Cure « Gamas Wanderings
November 11, 2009
Some of my friends got C.I.s in their 40’s and are satisfied with their C.I.s. All have been using hearing aids all their lives. Those who didn’t have good aural comprehension with their hearing aids tend not to understand speech well with C.I.s. They do understand environment sounds. Those who used to be HoH fare very well with C.I.s and are able to use the phone, etc.
I don’t know anyone personally who use a C.I. after being completely Deaf and unable to pick up any sounds all his/her life. I’ve read that the rate of ’success’ in that group is low. What does that mean? Does this mean they cannot hear anything? Or recognize only environment cues?
What is defined as the success? We have different opinions of what is s success.
Mishkazena
November 11, 2009
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Would you? I Would! « Gamas Wanderings « Neuro09's Blog
November 11, 2009
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Info on STEM CELLS from scientific source - Page 15 - AllDeaf.com
November 11, 2009
MZ, I’m seeing the same thing so far too.
I do wonder if stem cell cure would be different for those who never heard before? Would AV help? I have a friend who got a CI and he chose not to go for AV, he only wanted environmental sounds. Question here is are there any deaf adults that never heard before and got an CI, did any of them try AV?
Would getting a stem cell help these group of deaf people better? Maybe intensive AV? Who knows.
We do need to define success better.
gamaswanderings
November 11, 2009
This friend I spoke of was able to hear everything! People speaking is foreign to him. He could hear the dog walking on the floor, plastic bags making noise. So, he was able to hear! But, he was not able to understand others speaking.
gamaswanderings
November 11, 2009
Gamas said: “I meant, having heard and then lost hearing and not hearing for 40 years before trying stem cell, will the brain be able to pick up where it left off?”
Personally I have no doubt whatever I’d manage hearing again with no bother ! I have kept my speech, have always maintained links to hearing friends and others, and still feel I fully understand what sound is, I dream as a hearing person even after 40 years, and NEVER have dreamed in sign or myself as a deaf person, that’s been the problem really, my brain refuses to accept I am deaf. Hearing here I come lol, well I can dream can’t I ! I’d probably be 10 times more of a pest than I am now but…..
MM
November 11, 2009
To MM, how much do you hear with HAs? Powerful HAs can keep the brain stimulated to sounds. It’s not the same as someone stone deaf who can’t hear a single sound with HAs. I hear plenty with HAs so I am not too worried about how ill do with stem cells.
Deafdude
November 11, 2009
I gave up with hearing aids 30 years ago. Normally we are told regardless how you try your speech WILL suffer, your memory WILL go about sound after this time, I refute it.
I still ‘hear’ in my dreams,and watching older music captioned can fit the instrument sback in too ! Obviously I won’t relate to modern music or such as Ihave never heard it, but if you are talking normal sounds, like cars, birds, wind people talking, doors shutting etc, TOTAL RECALL.
I’ve seen my child shut a door behind him and had the ’sound’ put their by my brain, unnerving ! People who have heard my voice which I use every waking hour even with signing, is within ‘normal’ parameters as a hearing person, that’s their view not mine.. My old hearing aids were primtive anyway, they were amplifiers not hearing aids, and I knew when I started using them sound was NOT like what was entering my ear through them, my residual memory of sound and hearing seems virtually intact. So no I am not a hearing aid person with any residual hearing whatever, nor have a CI, I am REALLY profoundly deaf, no sh*t lol there aint a lot of us around. I can state I am profoundly deaf both ears, and there is no-one on the planet can say different…
MM
November 11, 2009
I have another friend who lost his hearing at 5 years old. He claims he still remembers how sounds used to be. Currently he hears nada, does not wear a hearing aid. He still maintains his speech. He thinks he would be able to pick up where he left off.
So, MM, I sure hope you can pick up where you left off as much as I hope my friend can.
As they say, anything is possible if you’re that determined.
Gamas
November 11, 2009
A clear case that even half a lifetime being deaf does not define me as a deaf person, which must annoy some people
MM
November 12, 2009
Stemcells helped this girl!
http://www.bbc.co.uk/ouch/messageboards/F2322274?thread=7061404&latest=1
neuro09
November 12, 2009
More than 50% would go for stem cells. Compare that to less than 5% who are CI candidates who have gone ahead with CI. My friend says many people who say “NO” to stem cells now will go for it several years down the road. After all, some of those who got CI said “NO” several years ago, but ended up getting CI down the road.
Deafdude
November 14, 2009
from “RSCI Newsletter” of November 2009 I read an announcement about the impending hearing loss treatment with stem cells. He says that in January 2010 will begin treatment (USA??). And there will be more news in the next issue. Hopefully, I at least expect more information and news!
That’s information
“HEAR YE, HEAR YE! THE FUTURE IS HERE!
Repair Stem Cells for a variety of hearing disorders will be available in the USA in January. Of all the treatments that RSCI recommends to patients; treatments for hearing disorders will be the least expensive. To find out more, email donmargolis@gmail.com with the word “HEARING” in the subject line. Please include your name and the country in which you currently reside in the message. Next issue will cover stem cells and hearing disorders”.
desdeREAL PEOPLE – REAL NAMES – REAL IMPROVEMENT.
source: http://neuro09.wordpress.com/2009/11/14/real-people-real-names-real-improvement/
neuro09
November 14, 2009