The hearing and cochlear implant debate! Share your opinion! - Page 7

dreama · 05-28-2009, 07:11 PM

Quote:

Originally Posted by Buffalo

I am learning about the stuff that the deafblind people go thru. I want to see if there is a way to help them to be more independent for my selfish reason. You see, I have an eye problem and that is why I am learning from you and Dreama.

I am glad you are learning from us. What is your eye condition? How much do you see now? Something you have to remember is often the transission period between sighted and blindness is the hardest you will have to go through. It's a time of change when things will need to be done differantly. Once you adapt though with the right mind set, things should get easier. That is what happens with me.

Hear Again · 05-28-2009, 07:37 PM

Quote:

Originally Posted by dreama

You are right there. It's my only way right now then so it will just have to do.

I'm learning tactile signing at the moment and it's nice when people know a bit of signing simply so they can use fingerspelling with me.

I don't have a braille note or face to face but it's definately the next item on my list. I'd also want the Global possisioning device.

I have a BrailleNote 32 BT with GPS and it's wonderful. VR purchased it for me. Thanks to GPS, I can type in my starting address and final destination and read all of the information on the Braille display. I can find out how quickly a vehicle is traveling, the direction they are traveling in, what businesses I'm passing along the way as well as major streets/intersections I encounter. I still use my BrailleNote with GPS even though I have CIs especially since my neighborhood undergoes alot of changes to retail businesses given the fact that it is located near a busy highway.

Hear Again · 05-28-2009, 07:41 PM

Quote:

Originally Posted by Buffalo

I don't have much problem with cashiers, etc. It is my own family and relatives that I am having problem with. They see me everyday when I was growing up. It is one way street when it ought to be two way street.
If they expect me to speak then it is fair for me to expect them to sign. The same goes for co-workers. I mean I could be seeing them everyday.

I just wish that they would get over their fear of deaf people and sign language. Sign language (ASL or PSE) can be extremely useful in some sittuations. They can use sign language to their benefits. They ought to make it two-way street but they aren't now.

I understand how you feel because my parents didn't know (tactile) sign either. We communicated by using my Braille display, TeleBraille or Teletouch. If they had learned PSE or even SEE, it would have made communication so much easier for all of us.

dreama · 05-28-2009, 07:50 PM

Quote:

Originally Posted by Hear Again

I have a BrailleNote 32 BT with GPS and it's wonderful. VR purchased it for me. Thanks to GPS, I can type in my starting address and final destination and read all of the information on the Braille display. I can find out how quickly a vehicle is traveling, the direction they are traveling in, what businesses I'm passing along the way as well as major streets/intersections I encounter. I still use my BrailleNote with GPS even though I have CIs especially since my neighborhood undergoes alot of changes to retail businesses given the fact that it is located near a busy highway.

That sounds good. I hope I get one of these devices sooner or latter.

At the moment I'm concentrating on learing new routes with a long cane rather then a dog (since Jilli has retired). I was put off at the wrong bus stop today. Luckily some kind soul put me back on track but I think a global posisioning device would have helped.

Buffalo · 05-28-2009, 08:43 PM

Quote:

Originally Posted by dreama

I am glad you are learning from us. What is your eye condition? How much do you see now? Something you have to remember is often the transission period between sighted and blindness is the hardest you will have to go through. It's a time of change when things will need to be done differantly. Once you adapt though with the right mind set, things should get easier. That is what happens with me.

It is myopia retinal detachment. It hasn't detached but I am on the lookout for it. I can see fine now. They found it early so it is a good thing for them to give me the head up. The last doctor said it could be like 20 years before I go blind. I hope it would be 20 or more so that is after my retirement.

GPS sounds good for you to find out where you are. What does it read? Street names or location numbers?

rockdrummer · 05-28-2009, 09:55 PM

Quote:

Originally Posted by Buffalo

The first half - look at my post to Hear Again. As long as the hearing people refuse to put ASL in Deaf schools, there won't be equitable education enviroment. I don't like the mainstream schools because the deaf class tends to be so small and the interpreters are stretched thin.

Look at the pattern. They expected hearing aids to help us hear and now CI came along, they are expecting CI to help us to hear better. I am not surprised that the deaf people believe that CI are being forced on deaf people. The hearing people expect too much from hearing aids in the past and now CIs. They expect us to hear and understand everything in the classroom without the use of ASL. I want to see the deaf kids to have stress-free education along with their deaf peers. I won't be surprised if some state pass the law that all deaf babies are to be fitted with CI if CI will help them. It is just they expected too much from CIs. They still haven't heard us about our feelings and opinions on Deaf Education. They are the ones that need CI in order to listen to us!

you seem to be very cynical. I am sure you have your reasons. I too am cynical about many things in life. I think if you look at some of the current trends there does seem to be a movement towards trying to fix the problems with regards to educating deaf kids. Again, education and awareness about deafness I believe will go a long way. And while I can't be 100% sure, I am reasonably confident that CI's are not being forced on any deaf people. If anyone cares to provide any evidence to the contrary, I am more than willing to consider it. I don't consider hearsay to be evidence.

Hear Again · 05-28-2009, 10:37 PM

Quote:

Originally Posted by rockdrummer

you seem to be very cynical. I am sure you have your reasons. I too am cynical about many things in life. I think if you look at some of the current trends there does seem to be a movement towards trying to fix the problems with regards to educating deaf kids. Again, education and awareness about deafness I believe will go a long way. And while I can't be 100% sure, I am reasonably confident that CI's are not being forced on any deaf people. If anyone cares to provide any evidence to the contrary, I am more than willing to consider it. I don't consider hearsay to be evidence.

Hear Again · 05-28-2009, 10:40 PM

Quote:

Originally Posted by dreama

That sounds good. I hope I get one of these devices sooner or latter.

At the moment I'm concentrating on learing new routes with a long cane rather then a dog (since Jilli has retired). I was put off at the wrong bus stop today. Luckily some kind soul put me back on track but I think a global posisioning device would have helped.

I still haven't decided whether or not I want to have another guide dog. Due to the severe CTS in my left hand, my dog will need to be trained on my right side and I'm not sure how comfortable I feel about that. I also worry about constantly comparing Tigger to my new dog. The last thing I want to do is take out my frustration on the new dog I'm given when they will have 2 different personalities. I'm still mulling over my decision and am going to think about it carefully before I decide one way or the other.

Pinky · 05-28-2009, 11:17 PM

Buffalo, I am glad that you're learning about deafblind with CI. I has retinitis pigmentosa. I can't see in the dark room and dark at night when they are talk to me with sign language and I can't hear the hearing people's chattering. All deafblind and US/RP and eyes disease people are feel lonely, isolate, depress, frustrate, startles easy when they can't see or hear. Is that make sense? The people's option for cochlear implant to communicate with hearing family and safe the life from noise background. CI isn't make us hearing person. Just simple to hear understand and things. The deafblind people are not quit sign language through hands tactile. Even RP with ASL will not make them quit ASL. They are comfortable with speech and ASL.

dreama · 05-28-2009, 11:20 PM

Quote:

Originally Posted by Hear Again

I still haven't decided whether or not I want to have another guide dog. Due to the severe CTS in my left hand, my dog will need to be trained on my right side and I'm not sure how comfortable I feel about that. I also worry about constantly comparing Tigger to my new dog. The last thing I want to do is take out my frustration on the new dog I'm given when they will have 2 different personalities. I'm still mulling over my decision and am going to think about it carefully before I decide one way or the other.

I encourage you to think about it. I'm taking the cane route since It means that I can keep Jilli till the end.

I think that if you have doupts wether a dog would be a good thing or not I suggest you try to manage with a cane for a while. Please don't rush into it. It would be better to have all your various health problems sorted first before you get a dog later on, rather then get a dog now and find you can't keep him or her due to your health.

dreama · 05-28-2009, 11:34 PM

Quote:

Originally Posted by Pinky

All deafblind and US/RP and eyes disease people are feel lonely, isolate, depress, frustrate, startles easy when they can't see or hear.

No, not all of us. I am deafblind too. I am not lonely or Isolated as I have my ex guide dog Jilli for company plus I talk to people on line.

Some are depressed but that's not always because they are deafblind. Sometimes we are depressed and frustrated by the way we are treated because certain people do too much to help. We go out and get lost as this will happen if you are new to long cane routes. They people see you lost and call the police. It's quite humiliating.

I know some deafblind people who have adjusted really well to their problems. Their is a way forward. Their IS light at the other end of the tunnel. You will feel differantly when you finally come to terms with your deafblindness. When you finally adapt to being deafblind you will find deafblindness is no big deal.

Hear Again · 05-29-2009, 12:31 AM

Quote:

Originally Posted by dreama

I encourage you to think about it. I'm taking the cane route since It means that I can keep Jilli till the end.

I think that if you have doupts wether a dog would be a good thing or not I suggest you try to manage with a cane for a while. Please don't rush into it. It would be better to have all your various health problems sorted first before you get a dog later on, rather then get a dog now and find you can't keep him or her due to your health.

I don't mean to mention my bipolar, but it's one of the reasons why I'm putting a guide dog on the back burner for now. My moods have recently been stabilized thanks to new meds that I'm on and I really don't want to have a manic or manic/psychotic episode due to the stress caused by training. When I lose Tigger, it's going to be very difficult for me and the thought of losing her breaks my heart. Even typing about it right now brings me to tears. It's a loss I don't think I'll ever get over. <sad>

Pinky · 05-29-2009, 10:11 AM

Quote:

Originally Posted by dreama

No, not all of us. I am deafblind too. I am not lonely or Isolated as I have my ex guide dog Jilli for company plus I talk to people on line.

Some are depressed but that's not always because they are deafblind. Sometimes we are depressed and frustrated by the way we are treated because certain people do too much to help. We go out and get lost as this will happen if you are new to long cane routes. They people see you lost and call the police. It's quite humiliating.

I know some deafblind people who have adjusted really well to their problems. Their is a way forward. Their IS light at the other end of the tunnel. You will feel differantly when you finally come to terms with your deafblindness. When you finally adapt to being deafblind you will find deafblindness is no big deal.

I am talking about CI for deafblind and RP. When you can't hear and do you feel lonely with no communicate?

For me, I have hearing husband. He love to talkative with his family and friends when I can't understand his speech with my HA. I interrupted his talk and ask him repeat what he said. He feel like it's pressure when I asked him repeat. He have a hard time to interpret for me what the people said. I felt like impatient and want to leave. I felt guilty for interrupt his talk. I decide to get CI to hear and listen his voice. He like to listen the music. I made him stop listen the music when I can't hear. It's frustrate to me. That was how I felt with vision and hear problem in communicate. I can't talk with him when he is driving in dangerous traffic or highway. He have a hard time to focus on road when I talk with him with my ASL. We didn't want to get crash. That's why I picked CI to hear and listen my husband's talking without sign language. So I don't have to worry about ask him repeat with sign language. When we are on road trip at night. I am tired to turn light dim on and sign with him. I used my blackberry to type.

dreama · 05-29-2009, 03:47 PM

Quote:

Originally Posted by Pinky

I am talking about CI for deafblind and RP. When you can't hear and do you feel lonely with no communicate?

For me, I have hearing husband. He love to talkative with his family and friends when I can't understand his speech with my HA. I interrupted his talk and ask him repeat what he said. He feel like it's pressure when I asked him repeat. He have a hard time to interpret for me what the people said. I felt like impatient and want to leave. I felt guilty for interrupt his talk. I decide to get CI to hear and listen his voice. He like to listen the music. I made him stop listen the music when I can't hear. It's frustrate to me. That was how I felt with vision and hear problem in communicate. I can't talk with him when he is driving in dangerous traffic or highway. He have a hard time to focus on road when I talk with him with my ASL. We didn't want to get crash. That's why I picked CI to hear and listen my husband's talking without sign language. So I don't have to worry about ask him repeat with sign language. When we are on road trip at night. I am tired to turn light dim on and sign with him. I used my blackberry to type.

I know what you are saying but CI's don't make you hearing. They make you Hard of hearing. They won't solve all your problems. I also had problems when I was HOH. In fact I had more problems towards the end because I felt presurized to wear my HA despite recruitment so losing my hearing actually came as a releif.

I am completely deaf. I am also completely blind in most lighting conditions. If my computer breaks down or my electricity is cut off yes I do feel a little lonely but other then that no.

dreama · 05-29-2009, 03:50 PM

Quote:

Originally Posted by Hear Again

I don't mean to mention my bipolar, but it's one of the reasons why I'm putting a guide dog on the back burner for now. My moods have recently been stabilized thanks to new meds that I'm on and I really don't want to have a manic or manic/psychotic episode due to the stress caused by training. When I lose Tigger, it's going to be very difficult for me and the thought of losing her breaks my heart. Even typing about it right now brings me to tears. It's a loss I don't think I'll ever get over. <sad>

I fully understand what you are saying. I felt very anxious yesterday because my neighbour dog sat for Jilli and I was without her for several hours before they brought her back.

Buffalo · 05-29-2009, 03:57 PM

Quote:

Originally Posted by dreama

I know what you are saying but CI's don't make you hearing. They make you Hard of hearing. They won't solve all your problems. I also had problems when I was HOH. In fact I had more problems towards the end because I felt presurized to wear my HA despite recruitment so losing my hearing actually came as a releif.

I am completely deaf. I am also completely blind in most lighting conditions. If my computer breaks down or my electricity is cut off yes I do feel a little lonely but other then that no.

Thanks for the truth. I am hoping that there are a better way to understand what was being said than CI. Something that doesn't required years of therapy.

Hear Again · 05-29-2009, 04:37 PM

Quote:

Originally Posted by dreama

I fully understand what you are saying. I felt very anxious yesterday because my neighbour dog sat for Jilli and I was without her for several hours before they brought her back.

Being separated from your dog or having to deal with the pain of putting them to sleep and/or their sudden death is one of the most difficult things about having a dog.

I've never had to deal with the death of a guide dog before. My last guide dog Sugar was given to someone who lived in town (he was an elderly patient of my GP who was looking for a companion animal). Sugar passed away 2 years later, but I was not there when it happened. This person called me on the phone to tell me she died. I'm glad I wasn't there because I don't think I would have been able to handle that emotionally. When Tigger passes away, I have no idea how I will cope, so in the end, I may not get another guide dog at all. If I do, it probably won't be for a long time. We'll see.

dreama · 05-29-2009, 04:43 PM

Quote:

Originally Posted by Hear Again

Being separated from your dog or having to deal with the pain of putting them to sleep and/or their sudden death is one of the most difficult things about having a dog.

I've never had to deal with the death of a guide dog before. My last guide dog Sugar was given to someone who lived in town (he was an elderly patient of my GP who was looking for a companion animal). Sugar passed away 2 years later, but I was not there when it happened. This person called me on the phone to tell me she died. I'm glad I wasn't there because I don't think I would have been able to handle that emotionally. When Tigger passes away, I have no idea how I will cope, so in the end, I may not get another guide dog at all. If I do, it probably won't be for a long time. We'll see.

I agree totally. I was there when Bruce (my last guide dog) had to be euthanised.

Hear Again · 05-29-2009, 04:44 PM

After I lost my hearing in 1995, I felt extremely isolated. Since I didn't know tactile sign or other alternative communication techniques, it was very difficult for me to communicate with others. It wasn't until I started learning tactile PSE, SEE and ASL that I started feeling better about the loss of my hearing. I also attended an AADB convention in which I met other deafblind people and used a tactile terp for the first time. It was a wonderful experience and one I'll never forget. Thanks to AADB, I learned that it is possible to live a happy, productive life despite deafblindness. As for why I chose to get CIs, I decided to be implanted to increase my own personal safety. I live in a very busy neighborhood where there aren't alot of pedestrians. There is also a 4-lane highway that I need to cross in order to shop or take public transportation. For me, getting a CI was the right decision, but others may feel differently. CIs aren't for everyone and what works for one person (hearing aids, ASL, tactile sign, CI) may not work for someone else.

Hear Again · 05-29-2009, 04:45 PM

Quote:

Originally Posted by dreama

I agree totally. I was there when Bruce (my last guide dog) had to be euthanised.

How long did it take before you decided to get another dog?

dreama · 05-29-2009, 04:56 PM

Quote:

Originally Posted by Hear Again

How long did it take before you decided to get another dog?

I got Jilli the day after Bruce retired. My dad took him back home with him and I went to train at guide dog association the following day with Jilli. I felt really bad about having to retire him but he had become very over protective. If someone aproached me he was prone to be fierce so that made it hard to keep him. I still felt really guilty about it though. I felt I was trading him in for a newer model. This is one of the reasons I've decided to keep Jilli till the end.

Bruce had to be retired at 9 and a half due to challanging behavior. He died age 13 with breathing and heart problems. I was at my dad's at the time. We both went to the vet with Bruce and stayed with him till the very end. It was very sad.

dreama · 05-29-2009, 05:11 PM

Quote:

Originally Posted by Hear Again

After I lost my hearing in 1995, I felt extremely isolated.

I can understand. I missed using a Monocular when my sight grew too bad for that and now I can't see anything at all in most lighting conditions. However this is a phase that can be overcome given the right support: In your case tactile sign language and help to acheive a better mindset by going to convention and meeting deafblind who have coped with their loss.

I haven't had that yet. I pay someone to teach me tactile signing every week. I'm also getting mobility lessons now. Also help in the kitchen, and now they are looking into communicator guides for me. I do have the internet though and I also have my book and also my furry friends.

But most importantly of all is to get into the right mindset to deal with deafblindness. To be able to think possitively of what you still do have instead of what you don't.

I can understand why you wanted the CI for personal safety. I'd like a tactaid 7 for that reason as my tactaid's not working but unfortunately I'm not sure if I'll get it. Tacile aids will let me know about environmental noises through vibration. I'm still waiting for my next apointment. See what happens then.

dreama · 05-29-2009, 05:23 PM

Quote:

Originally Posted by Buffalo

Thanks for the truth. I am hoping that there are a better way to understand what was being said than CI. Something that doesn't required years of therapy.

Sadly it seems in people's eagernes to push CI's alternatives are being pushed asside and going out of buisness. I don't think CI's shouldn't be used. They just need to be promoted as assistive tecnology along side ALL other forms of assistive tecnology. NOT a cure for deafness. Their also needs to be money made available to keep devices for deafblind people going since our numbers are so small that we cannot keep things from going out of buisness. We just don't have the consumer power for that.

Hear Again · 05-29-2009, 05:31 PM

dreama,

What is a communicator guide? Is that the same thing as what we call an SSP here in the U.S.?

Hear Again · 05-29-2009, 05:32 PM

dreama,

How do you communicate with the person who helps you with mobility? Do they trace block letters into your hand?

dreama · 05-29-2009, 05:44 PM

Quote:

Originally Posted by Hear Again

dreama,

How do you communicate with the person who helps you with mobility? Do they trace block letters into your hand?

No, He knows the deafblind manual.

Hear Again · 05-29-2009, 05:45 PM

Quote:

Originally Posted by dreama

No, He knows the deafblind manual.

What kind of alternative travel techniques are you learning?

For example, how do you cross the street? I used a communication card or an endless loop tape which played a recording that said
"I am deaf and blind. Please tap me on the shoulder when it is safe to cross."

dreama · 05-29-2009, 05:46 PM

Quote:

Originally Posted by Hear Again

dreama,

What is a communicator guide? Is that the same thing as what we call an SSP here in the U.S.?

What is an SSP?

A communicator guide is someone who takes you to places and interprs for you. They are also called intervenors, guide helps or guide interpreters.

dreama · 05-29-2009, 05:51 PM

Quote:

Originally Posted by Hear Again

What kind of alternative travel techniques are you learning?

For example, how do you cross the street? I used a communication card or an endless loop tape which played a recording that said
"I am deaf and blind. Please tap me on the shoulder when it is safe to cross."

He teaches me how to get from A to B basically. I still get lost occasionally but I'm starting to learn how to back track if I'm not in the right place.

Yes for road crossings I have a card that says "I am deafblind. I would like to cross the road"

I also hold up a card to say "I am deafblind I would like the 60 bus" and another that says "I am deafblind. I would like to get off at the terminus at the bottom of crainspark road".

I find cards very useful.

Hear Again · 05-29-2009, 05:58 PM

Quote:

Originally Posted by dreama

I also hold up a card to say "I am deafblind I would like the 60 bus" and another that says "I am deafblind. I would like to get off at the terminus at the bottom of crainspark road".

Before I received CIs or had a BrailleNote GPS, I also used communication cards for crossing the street as well as on the bus.

My cards would say "I am deaf and blind. Please tap me on the shoulder when we reach Smith Street." It worked great because I didn't have to worry about being unable to hear the driver announce my stop.

One final question. Do you use a longer cane similar to the NFB? I prefer longer canes myself, but have difficulty using them due to my CTS.

05-28-2009, 11:17 PM	#189 (permalink)
Pinky I'm proud to have CI!!!! Join Date: Apr 2008 Posts: 5,441	Buffalo, I am glad that you're learning about deafblind with CI. I has retinitis pigmentosa. I can't see in the dark room and dark at night when they are talk to me with sign language and I can't hear the hearing people's chattering. All deafblind and US/RP and eyes disease people are feel lonely, isolate, depress, frustrate, startles easy when they can't see or hear. Is that make sense? The people's option for cochlear implant to communicate with hearing family and safe the life from noise background. CI isn't make us hearing person. Just simple to hear understand and things. The deafblind people are not quit sign language through hands tactile. Even RP with ASL will not make them quit ASL. They are comfortable with speech and ASL. __________________ I'm expecting! It's a BOY!!!!! LEFT: Implanted: 6/12/09 Activated: 7/7/09 Freedom

05-29-2009, 04:44 PM	#199 (permalink)
Hear Again Each day is a gift. Join Date: Jan 2005 Location: Wisconsin Posts: 20,073 Blog Entries: 6	After I lost my hearing in 1995, I felt extremely isolated. Since I didn't know tactile sign or other alternative communication techniques, it was very difficult for me to communicate with others. It wasn't until I started learning tactile PSE, SEE and ASL that I started feeling better about the loss of my hearing. I also attended an AADB convention in which I met other deafblind people and used a tactile terp for the first time. It was a wonderful experience and one I'll never forget. Thanks to AADB, I learned that it is possible to live a happy, productive life despite deafblindness. As for why I chose to get CIs, I decided to be implanted to increase my own personal safety. I live in a very busy neighborhood where there aren't alot of pedestrians. There is also a 4-lane highway that I need to cross in order to shop or take public transportation. For me, getting a CI was the right decision, but others may feel differently. CIs aren't for everyone and what works for one person (hearing aids, ASL, tactile sign, CI) may not work for someone else. __________________ Left ear - Nucleus 24 Contour Advance with Freedom BTE (Implanted: 12/22/04 \| Activated: 1/18/05) Right ear - Nucleus Freedom (Implanted: 2/1/06 \| Activated: 3/1/06) Deafblind/Postlingual

05-29-2009, 05:31 PM	#204 (permalink)
Hear Again Each day is a gift. Join Date: Jan 2005 Location: Wisconsin Posts: 20,073 Blog Entries: 6	dreama, What is a communicator guide? Is that the same thing as what we call an SSP here in the U.S.? __________________ Left ear - Nucleus 24 Contour Advance with Freedom BTE (Implanted: 12/22/04 \| Activated: 1/18/05) Right ear - Nucleus Freedom (Implanted: 2/1/06 \| Activated: 3/1/06) Deafblind/Postlingual

05-29-2009, 05:32 PM	#205 (permalink)
Hear Again Each day is a gift. Join Date: Jan 2005 Location: Wisconsin Posts: 20,073 Blog Entries: 6	dreama, How do you communicate with the person who helps you with mobility? Do they trace block letters into your hand? __________________ Left ear - Nucleus 24 Contour Advance with Freedom BTE (Implanted: 12/22/04 \| Activated: 1/18/05) Right ear - Nucleus Freedom (Implanted: 2/1/06 \| Activated: 3/1/06) Deafblind/Postlingual

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