What are the biggest difficulties deaf or HOH people face nowadays?

Posted by pedronpaiva @pedronpaiva, Nov 3, 2020

I'm very curious to know a bit more about what do you feel are the biggest difficulties still lived by the deaf community today that aren't solved by the relay services? (in the day to day life, work etc)

How and where do you believe that technology could be used to continue improving the lives of the American deaf citizen?

Good questions. First, I encourage you to understand that while the Deaf population and the hard of hearing population have some overlapping issues, their difference are very significant. "Big D Deaf" identifies the Culturally Deaf population that considers their deafness a 'difference' rather than a disability. They use manual communication almost exclusively. I say 'almost', because some of them have been taught to use some oral speech from childhood, but even then, most prefer not to use speech. American Sign Language is their first language. They loudly claim they do not want to be 'fixed'.

Among the hard of hearing population there area variables that create differences. A lot has to do with the age of onset of the hearing loss. When it happens after the onset of language development it's very different than if the partial deafness is there from birth or early childhood. Language development is a key to communication with both the spoken word and the written word. Data from the National Institutes of Health indicates that there are over 48 million Americans who have hearing loss. Approximately 2 million of that number are culturally Deaf. Yet, because they are visible, due to the manual communication they use, many believe they are the majority.

Hard of hearing people who lose hearing as adults, often spend more energy denying and hiding it than they do finding a way to remedy it, Consequently many do not get the help they need, or they wait years before becoming so frustrated they seek help. Other statistics indicate that 75% of the people who could benefit from hearing aids don't get them. Stigma and denial are among the primary reasons for that, but the high cost of quality hearing aids is a huge barrier.

You ask what technology helps us. All of the populations with hearing loss benefit from visual support. Captions make a huge difference for all of us. Masks worn currently, due to COVID19, create a huge barrier to all of us because we all depend on facial expressions and lip movements to supplement whatever means of communication we use. Cochlear implants have been miraculous for many people who wish to stay in the hearing mainstream. The culturally Deaf population does not like cochlear implants because when successful, they have removed people from the Deaf Culture Community. Hard of hearing people who get cochlear implants consider them miracles. Hearing aids are also miracles for people with degrees of hearing loss that can be helped by them. The advances in hearing aids have been remarkable in the last few decades. Hard of hearing people in the know, know that technologies that connect with those modern hearing aids can keep one in the hearing mainstream. The key word is 'connect'. Not all hearing aids will connect with hearing loops or BlueTooth devices. Both means of connection are extremely important. This writer believes that all quality hearing aids should include both means of connection. That means both telecoils and BlueTooth components.

Caption phones are life saving for many people with hearing loss. They have come a long way in the last two decades. Hearing Loops and other assistive technology in theaters, work places, performing arts centers, meeting rooms, worship centers, libraries, etc. are extremely helpful to the population that wants and needs to hear. ASL interpreters are in demand by the Deaf population. Both are necessary to provide full 'communication access'.

I am a bimodal user of a cochlear implant and a hearing aid, My brain has become accustomed to using both technologies. It is amazing. I love the hand held BT mini mic that relates to both devices. It helps me in noisy settings such as restaurants, social gatherings, etc. I love the telecoils that connect me to room installed technologies and also make it possible for me to connect simply and inexpensively to my laptop, my cell phone, other audio devices, etc. I cannot imagine not having access to all of these technologies.

The key to living well with hearing loss is to know what is available and what will work for YOU. Far to many from the hard of hearing population have been led to believe that nothing can help them. Far from the truth, but one has to be open to talking about it and learning about it. HLAA has been my guide since 1983. The chapter meetings and national conferences provide opportunities to meet other people. UNfortunateluy, COVID 19 is preventing HLAA from holding in person meetings, but there is a lot of information available at the website. And, we will get back to real meetings soon. Meanwhile, Zoom and Google Meets have provided get together options. Just learning I wasn't alone back in 1983 was life changing. HLAA is the tool for learning. http://www.hearingloss.org

Julie O

REPLY

The previous post is a great answer. There are so many details that go into answering your question.

One thing I want to add is "speech-to-text" technology. A lot of us use apps on our cell phones that convert speech to text and do it fairly quickly and accurately. Some are better than others but none of them are perfect. So the time lag and inaccuracies are just part of the life of a hard of hearing person. Our hearing aids and CIs are the same. We are always guessing about things we didn't quite hear or heard incorrectly. And our brains need time to process all that and try to make sense out of it.

While not quite "technology" a pencil and paper works too.

REPLY

For me the Phonak device which streams TV and computer audio directly into my hearing aids was a life changer. Despite the fact I wore hearing aids, I had been struggling for years with hearing the TV and using my cell phone, as well as normal conversation. Having a streamer gave me an understanding of what it was like to hear clearly and easily again. Once I had that, I began to be much more assertive with my audiologist about adjusting my hearing aids properly.

REPLY
@julieo4

Good questions. First, I encourage you to understand that while the Deaf population and the hard of hearing population have some overlapping issues, their difference are very significant. "Big D Deaf" identifies the Culturally Deaf population that considers their deafness a 'difference' rather than a disability. They use manual communication almost exclusively. I say 'almost', because some of them have been taught to use some oral speech from childhood, but even then, most prefer not to use speech. American Sign Language is their first language. They loudly claim they do not want to be 'fixed'.

Among the hard of hearing population there area variables that create differences. A lot has to do with the age of onset of the hearing loss. When it happens after the onset of language development it's very different than if the partial deafness is there from birth or early childhood. Language development is a key to communication with both the spoken word and the written word. Data from the National Institutes of Health indicates that there are over 48 million Americans who have hearing loss. Approximately 2 million of that number are culturally Deaf. Yet, because they are visible, due to the manual communication they use, many believe they are the majority.

Hard of hearing people who lose hearing as adults, often spend more energy denying and hiding it than they do finding a way to remedy it, Consequently many do not get the help they need, or they wait years before becoming so frustrated they seek help. Other statistics indicate that 75% of the people who could benefit from hearing aids don't get them. Stigma and denial are among the primary reasons for that, but the high cost of quality hearing aids is a huge barrier.

You ask what technology helps us. All of the populations with hearing loss benefit from visual support. Captions make a huge difference for all of us. Masks worn currently, due to COVID19, create a huge barrier to all of us because we all depend on facial expressions and lip movements to supplement whatever means of communication we use. Cochlear implants have been miraculous for many people who wish to stay in the hearing mainstream. The culturally Deaf population does not like cochlear implants because when successful, they have removed people from the Deaf Culture Community. Hard of hearing people who get cochlear implants consider them miracles. Hearing aids are also miracles for people with degrees of hearing loss that can be helped by them. The advances in hearing aids have been remarkable in the last few decades. Hard of hearing people in the know, know that technologies that connect with those modern hearing aids can keep one in the hearing mainstream. The key word is 'connect'. Not all hearing aids will connect with hearing loops or BlueTooth devices. Both means of connection are extremely important. This writer believes that all quality hearing aids should include both means of connection. That means both telecoils and BlueTooth components.

Caption phones are life saving for many people with hearing loss. They have come a long way in the last two decades. Hearing Loops and other assistive technology in theaters, work places, performing arts centers, meeting rooms, worship centers, libraries, etc. are extremely helpful to the population that wants and needs to hear. ASL interpreters are in demand by the Deaf population. Both are necessary to provide full 'communication access'.

I am a bimodal user of a cochlear implant and a hearing aid, My brain has become accustomed to using both technologies. It is amazing. I love the hand held BT mini mic that relates to both devices. It helps me in noisy settings such as restaurants, social gatherings, etc. I love the telecoils that connect me to room installed technologies and also make it possible for me to connect simply and inexpensively to my laptop, my cell phone, other audio devices, etc. I cannot imagine not having access to all of these technologies.

The key to living well with hearing loss is to know what is available and what will work for YOU. Far to many from the hard of hearing population have been led to believe that nothing can help them. Far from the truth, but one has to be open to talking about it and learning about it. HLAA has been my guide since 1983. The chapter meetings and national conferences provide opportunities to meet other people. UNfortunateluy, COVID 19 is preventing HLAA from holding in person meetings, but there is a lot of information available at the website. And, we will get back to real meetings soon. Meanwhile, Zoom and Google Meets have provided get together options. Just learning I wasn't alone back in 1983 was life changing. HLAA is the tool for learning. http://www.hearingloss.org

Julie O

Jump to this post

Julie O…… I really liked this post. You are obviously very experienced at working with hearing loss and have a lot of knowledge. Hoping you can share some advice. Had a visit with my audi this week. Until six weeks ago I had in-ear Oticon hearing aids. I had more hearing loss and they were no longer effective. My audi said that the aids I had could not be made any stronger and I would have to go with a stronger microphone. Set me up with aids that have the ear mold. The mold slides partially into my ear. The left one is fine. The right one will not stay in place in my ear and stops working with any head motion. I have been back in twice. Audiologist tried to modify the aid by shaving it and making it a little smaller. Still did not work. This week she said there is nothing more that can be done for me. Another doctor suggested that I look into a choclear implant but she was not encouraging. Told me it involves months of rehabilitation, hard work and extremely difficult. I have a hearing test next week and then see her again and she will send the report in to see if I might be a candidate for an implant. Meantime I want to look into some of the items mentioned in the posts on this site and don't know where to start. So questions: 1. What are telecoils, how do they work, and do you need a special phone to use them. 2. Is there a computer that does captioning? 3. Is there an answering machine that captions (I can no longer hear my message machine)? 4. Is there anything that connects to the TV to make hearing easier?

I also have a balance and vertigo problem 24/7 and find it very difficult to do research on the computer for information. Also there seem to be many options and it becomes confusing.

If you have time and can answer any of these questions I would really appreciate it. Or if anyone else on this site has any ideas for me please share. Thank you so much. Judy

Liked by pedronpaiva

REPLY
@judyca7

Julie O…… I really liked this post. You are obviously very experienced at working with hearing loss and have a lot of knowledge. Hoping you can share some advice. Had a visit with my audi this week. Until six weeks ago I had in-ear Oticon hearing aids. I had more hearing loss and they were no longer effective. My audi said that the aids I had could not be made any stronger and I would have to go with a stronger microphone. Set me up with aids that have the ear mold. The mold slides partially into my ear. The left one is fine. The right one will not stay in place in my ear and stops working with any head motion. I have been back in twice. Audiologist tried to modify the aid by shaving it and making it a little smaller. Still did not work. This week she said there is nothing more that can be done for me. Another doctor suggested that I look into a choclear implant but she was not encouraging. Told me it involves months of rehabilitation, hard work and extremely difficult. I have a hearing test next week and then see her again and she will send the report in to see if I might be a candidate for an implant. Meantime I want to look into some of the items mentioned in the posts on this site and don't know where to start. So questions: 1. What are telecoils, how do they work, and do you need a special phone to use them. 2. Is there a computer that does captioning? 3. Is there an answering machine that captions (I can no longer hear my message machine)? 4. Is there anything that connects to the TV to make hearing easier?

I also have a balance and vertigo problem 24/7 and find it very difficult to do research on the computer for information. Also there seem to be many options and it becomes confusing.

If you have time and can answer any of these questions I would really appreciate it. Or if anyone else on this site has any ideas for me please share. Thank you so much. Judy

Jump to this post

Hi judyca7, I'll try to answer some of your questions. My experience is based on living with hearing loss for many years, and getting involved in HLAA. I have learned so much from other hard of hearing people…more than from anywhere else.

First, the information you are getting about cochlear implants seems awfully biased. Yes, it will take some rehabilitation, but you can do that. Some people are able to rehab faster than others. A lot depends on your willingness to work on it. After a CI, your brain has to adjust to hearing differently. In most cases, the auditory nerve that sends signals to the brain has not been stimulated for a long time. It's functional, but has to be reinvigorated. My personal experience of getting a CI after over 30 years of progressive hearing loss was very positive. I was able to understand sounds I had not heard in years shortly after activation, and understanding speech came to me within a few months after activation. It sounded funny at first, but within a few months it sounded very clear.

The CI was done in my poorer ear. However, I had worked hard for two years to rehab that bad ear by using hearing aids with telecoils to listen to audio books. Prior to that I had not ever used an aid in that ear. I am sure that dormant hearing ability was stimulated a bit even though I tested out with a 95 decibel loss. When the sense of hearing goes unused for a length of time auditory deprivation may occur. It's kind of like having one's arm in a cast for a long time. That arm has to be exercised to regain muscle and flexibility, etc.

Attitude is a big factor in determining candidacy for cochlear implant surgery. One has to have realistic expectations and the realization that you will probably have to work at learning how to hear differently. I use the word 'differently' tongue in cheek…because what I hear now with my CI and hearing aid working together sounds completely natural to me. That includes music.

Telecoils are extremely helpful in both hearing aids and in CIs. A telecoil is a component inside a hearing aid or CI processor that acts like an antenna that connects to an audio system. It doubles the value of a hearing aid. It's like a separate system within the hearing aid itself that can be used in different ways. However, you have to learn to use it and have equipment that connects you to those things you want to hear. This should be a 'teaching moment' for every one who sells hearing aids. Unfortunately, many just ignore that opportunity.

Here's how it works. If there is an assistive listening system called a hearing loop in a room with a public address system (church, theater, performing arts center, business center, your own TV room, etc.), all you have to do is push a button on a hearing aid or CI processor to activate the telecoil. That turns off the hearing device's regular microphone, and picks up sound directly from the microphone being used by the speaker. It's like having binoculars for your ears as it cuts out all the extraneous noise in the area. You only hear what you want to hear. A small loop can be worn around one's neck and plugged into an audio device too. I use a 'neck loop' with my laptop all the time. It works great on Zoom, and when listening to YouTube presentations.

The hearing aid industry has been trying to eliminate extra components in hearing aids for years. Why? To make them smaller. Eliminating the telecoil in any of them has not made them better. The industry is also pushing BlueTooth technology. BT is great, but it does not replace telecoils. It also adds considerable cost, while a telecoil adds about $10. You need both if you want the whole package. That is true in CI processors too. Hard of hearing people in the know, who want to remain in the hearing mainstream will all tell you that.

If you look at advertisements for hearing aids, they all promote denial by saying their hearing aids are invisible. "No one will know you're wearing it", etc. How crazy is that? Why should people who need help hearing feel embarrassed for getting help? I respect the field of audiology, but find it disappointing that this stigma based attitude in marketing the products that help us continues.

Why you have trouble keeping an ear mold in one ear is mystifying. When having new ear molds made over the years, I have often had to have them filed down a bit. That's not unusual. They are created a lot like dental inlays. An impression is taken of the place that needs to be filled, and it must be perfect to be right.

I hope you can find the answers you need. Hearing aids are our first line of defense, but cochlear implants can help those of us with serious to profound hearing loss. An international consortium recently determined that CIs should be used more than they are. I believe there is information about that at http://www.hearingloss.org I understand you don't like searching on the internet, but there are a lot of answers there. Have you tried participating in any Zoom meetings held by HLAA chapters? Many are inviting anyone interested to join the discussions. As I said earlier, I've learned more from people like me than from the pros. Part of that is because we people can openly ask questions, complain a bit, share feelings, and get the kind of help we need. It helps to meet and talk with people who share the same concerns. Peer support rocks!

Sorry so long, but you asked a lot of questions. 🙂 Julie

Liked by barbb, pedronpaiva

REPLY
@julieo4

Hi judyca7, I'll try to answer some of your questions. My experience is based on living with hearing loss for many years, and getting involved in HLAA. I have learned so much from other hard of hearing people…more than from anywhere else.

First, the information you are getting about cochlear implants seems awfully biased. Yes, it will take some rehabilitation, but you can do that. Some people are able to rehab faster than others. A lot depends on your willingness to work on it. After a CI, your brain has to adjust to hearing differently. In most cases, the auditory nerve that sends signals to the brain has not been stimulated for a long time. It's functional, but has to be reinvigorated. My personal experience of getting a CI after over 30 years of progressive hearing loss was very positive. I was able to understand sounds I had not heard in years shortly after activation, and understanding speech came to me within a few months after activation. It sounded funny at first, but within a few months it sounded very clear.

The CI was done in my poorer ear. However, I had worked hard for two years to rehab that bad ear by using hearing aids with telecoils to listen to audio books. Prior to that I had not ever used an aid in that ear. I am sure that dormant hearing ability was stimulated a bit even though I tested out with a 95 decibel loss. When the sense of hearing goes unused for a length of time auditory deprivation may occur. It's kind of like having one's arm in a cast for a long time. That arm has to be exercised to regain muscle and flexibility, etc.

Attitude is a big factor in determining candidacy for cochlear implant surgery. One has to have realistic expectations and the realization that you will probably have to work at learning how to hear differently. I use the word 'differently' tongue in cheek…because what I hear now with my CI and hearing aid working together sounds completely natural to me. That includes music.

Telecoils are extremely helpful in both hearing aids and in CIs. A telecoil is a component inside a hearing aid or CI processor that acts like an antenna that connects to an audio system. It doubles the value of a hearing aid. It's like a separate system within the hearing aid itself that can be used in different ways. However, you have to learn to use it and have equipment that connects you to those things you want to hear. This should be a 'teaching moment' for every one who sells hearing aids. Unfortunately, many just ignore that opportunity.

Here's how it works. If there is an assistive listening system called a hearing loop in a room with a public address system (church, theater, performing arts center, business center, your own TV room, etc.), all you have to do is push a button on a hearing aid or CI processor to activate the telecoil. That turns off the hearing device's regular microphone, and picks up sound directly from the microphone being used by the speaker. It's like having binoculars for your ears as it cuts out all the extraneous noise in the area. You only hear what you want to hear. A small loop can be worn around one's neck and plugged into an audio device too. I use a 'neck loop' with my laptop all the time. It works great on Zoom, and when listening to YouTube presentations.

The hearing aid industry has been trying to eliminate extra components in hearing aids for years. Why? To make them smaller. Eliminating the telecoil in any of them has not made them better. The industry is also pushing BlueTooth technology. BT is great, but it does not replace telecoils. It also adds considerable cost, while a telecoil adds about $10. You need both if you want the whole package. That is true in CI processors too. Hard of hearing people in the know, who want to remain in the hearing mainstream will all tell you that.

If you look at advertisements for hearing aids, they all promote denial by saying their hearing aids are invisible. "No one will know you're wearing it", etc. How crazy is that? Why should people who need help hearing feel embarrassed for getting help? I respect the field of audiology, but find it disappointing that this stigma based attitude in marketing the products that help us continues.

Why you have trouble keeping an ear mold in one ear is mystifying. When having new ear molds made over the years, I have often had to have them filed down a bit. That's not unusual. They are created a lot like dental inlays. An impression is taken of the place that needs to be filled, and it must be perfect to be right.

I hope you can find the answers you need. Hearing aids are our first line of defense, but cochlear implants can help those of us with serious to profound hearing loss. An international consortium recently determined that CIs should be used more than they are. I believe there is information about that at http://www.hearingloss.org I understand you don't like searching on the internet, but there are a lot of answers there. Have you tried participating in any Zoom meetings held by HLAA chapters? Many are inviting anyone interested to join the discussions. As I said earlier, I've learned more from people like me than from the pros. Part of that is because we people can openly ask questions, complain a bit, share feelings, and get the kind of help we need. It helps to meet and talk with people who share the same concerns. Peer support rocks!

Sorry so long, but you asked a lot of questions. 🙂 Julie

Jump to this post

Julie, thanks for the encouragement about using an aid in an ear that's pretty close to useless. I was tested for a CI about a year ago, but failed by 5% overall, thanks to an aid in my sorta good ear. When I spent a year not really being able to hear much with my "good" ear, I realized that I was getting some sound from my bad ear, which hasn't heard much for nearly 40 years. Fortunately, thanks to taking mega-doses of HRT to offset Meniere's going bilateral, I've regained much of the hearing I had before going bilateral. Now that I'm stable and have done the first three months of intense VRT, I'm thinking about trying an aid in my bad ear. You've given me another reason to do so! Thank you!

REPLY
@judyca7

Julie O…… I really liked this post. You are obviously very experienced at working with hearing loss and have a lot of knowledge. Hoping you can share some advice. Had a visit with my audi this week. Until six weeks ago I had in-ear Oticon hearing aids. I had more hearing loss and they were no longer effective. My audi said that the aids I had could not be made any stronger and I would have to go with a stronger microphone. Set me up with aids that have the ear mold. The mold slides partially into my ear. The left one is fine. The right one will not stay in place in my ear and stops working with any head motion. I have been back in twice. Audiologist tried to modify the aid by shaving it and making it a little smaller. Still did not work. This week she said there is nothing more that can be done for me. Another doctor suggested that I look into a choclear implant but she was not encouraging. Told me it involves months of rehabilitation, hard work and extremely difficult. I have a hearing test next week and then see her again and she will send the report in to see if I might be a candidate for an implant. Meantime I want to look into some of the items mentioned in the posts on this site and don't know where to start. So questions: 1. What are telecoils, how do they work, and do you need a special phone to use them. 2. Is there a computer that does captioning? 3. Is there an answering machine that captions (I can no longer hear my message machine)? 4. Is there anything that connects to the TV to make hearing easier?

I also have a balance and vertigo problem 24/7 and find it very difficult to do research on the computer for information. Also there seem to be many options and it becomes confusing.

If you have time and can answer any of these questions I would really appreciate it. Or if anyone else on this site has any ideas for me please share. Thank you so much. Judy

Jump to this post

Need new mold – free of charge. Did not fit right- every audiologists I went to will do fitting again. It’s on them always. I am a candidate for cochlear implant. . I am holding off as long as I can. My old 15 year old aids are failing. But I am mostly retired. I handled as best I can. Tcoils connect with loops- wiring that with aids have tcoils ( Amtrak has them, Meetings with fellow loss folks – almost like a fm receiver) Bluetooth is different and a lot of audiologists telling folks to have that rather than tcoils. No way

REPLY
@julieo4

Hi judyca7, I'll try to answer some of your questions. My experience is based on living with hearing loss for many years, and getting involved in HLAA. I have learned so much from other hard of hearing people…more than from anywhere else.

First, the information you are getting about cochlear implants seems awfully biased. Yes, it will take some rehabilitation, but you can do that. Some people are able to rehab faster than others. A lot depends on your willingness to work on it. After a CI, your brain has to adjust to hearing differently. In most cases, the auditory nerve that sends signals to the brain has not been stimulated for a long time. It's functional, but has to be reinvigorated. My personal experience of getting a CI after over 30 years of progressive hearing loss was very positive. I was able to understand sounds I had not heard in years shortly after activation, and understanding speech came to me within a few months after activation. It sounded funny at first, but within a few months it sounded very clear.

The CI was done in my poorer ear. However, I had worked hard for two years to rehab that bad ear by using hearing aids with telecoils to listen to audio books. Prior to that I had not ever used an aid in that ear. I am sure that dormant hearing ability was stimulated a bit even though I tested out with a 95 decibel loss. When the sense of hearing goes unused for a length of time auditory deprivation may occur. It's kind of like having one's arm in a cast for a long time. That arm has to be exercised to regain muscle and flexibility, etc.

Attitude is a big factor in determining candidacy for cochlear implant surgery. One has to have realistic expectations and the realization that you will probably have to work at learning how to hear differently. I use the word 'differently' tongue in cheek…because what I hear now with my CI and hearing aid working together sounds completely natural to me. That includes music.

Telecoils are extremely helpful in both hearing aids and in CIs. A telecoil is a component inside a hearing aid or CI processor that acts like an antenna that connects to an audio system. It doubles the value of a hearing aid. It's like a separate system within the hearing aid itself that can be used in different ways. However, you have to learn to use it and have equipment that connects you to those things you want to hear. This should be a 'teaching moment' for every one who sells hearing aids. Unfortunately, many just ignore that opportunity.

Here's how it works. If there is an assistive listening system called a hearing loop in a room with a public address system (church, theater, performing arts center, business center, your own TV room, etc.), all you have to do is push a button on a hearing aid or CI processor to activate the telecoil. That turns off the hearing device's regular microphone, and picks up sound directly from the microphone being used by the speaker. It's like having binoculars for your ears as it cuts out all the extraneous noise in the area. You only hear what you want to hear. A small loop can be worn around one's neck and plugged into an audio device too. I use a 'neck loop' with my laptop all the time. It works great on Zoom, and when listening to YouTube presentations.

The hearing aid industry has been trying to eliminate extra components in hearing aids for years. Why? To make them smaller. Eliminating the telecoil in any of them has not made them better. The industry is also pushing BlueTooth technology. BT is great, but it does not replace telecoils. It also adds considerable cost, while a telecoil adds about $10. You need both if you want the whole package. That is true in CI processors too. Hard of hearing people in the know, who want to remain in the hearing mainstream will all tell you that.

If you look at advertisements for hearing aids, they all promote denial by saying their hearing aids are invisible. "No one will know you're wearing it", etc. How crazy is that? Why should people who need help hearing feel embarrassed for getting help? I respect the field of audiology, but find it disappointing that this stigma based attitude in marketing the products that help us continues.

Why you have trouble keeping an ear mold in one ear is mystifying. When having new ear molds made over the years, I have often had to have them filed down a bit. That's not unusual. They are created a lot like dental inlays. An impression is taken of the place that needs to be filled, and it must be perfect to be right.

I hope you can find the answers you need. Hearing aids are our first line of defense, but cochlear implants can help those of us with serious to profound hearing loss. An international consortium recently determined that CIs should be used more than they are. I believe there is information about that at http://www.hearingloss.org I understand you don't like searching on the internet, but there are a lot of answers there. Have you tried participating in any Zoom meetings held by HLAA chapters? Many are inviting anyone interested to join the discussions. As I said earlier, I've learned more from people like me than from the pros. Part of that is because we people can openly ask questions, complain a bit, share feelings, and get the kind of help we need. It helps to meet and talk with people who share the same concerns. Peer support rocks!

Sorry so long, but you asked a lot of questions. 🙂 Julie

Jump to this post

I have had problems since childhood- not mystified- Mrs Herb discovered a combination hard and soft molds works best for me .

REPLY
@bookysue

Need new mold – free of charge. Did not fit right- every audiologists I went to will do fitting again. It’s on them always. I am a candidate for cochlear implant. . I am holding off as long as I can. My old 15 year old aids are failing. But I am mostly retired. I handled as best I can. Tcoils connect with loops- wiring that with aids have tcoils ( Amtrak has them, Meetings with fellow loss folks – almost like a fm receiver) Bluetooth is different and a lot of audiologists telling folks to have that rather than tcoils. No way

Jump to this post

I encourage you NOT to put off going the CI route if you are a candidate. I waited a long time before getting a CI. I watched others I knew who had gotten them with awe. Still I waited. My only regret is that I didn't do it sooner. It made a positive difference in my work life, although I was only a few years short or retirement. then. It has made an incredible difference in my ability to enjoy my grandchildren.

REPLY
@julieo4

I encourage you NOT to put off going the CI route if you are a candidate. I waited a long time before getting a CI. I watched others I knew who had gotten them with awe. Still I waited. My only regret is that I didn't do it sooner. It made a positive difference in my work life, although I was only a few years short or retirement. then. It has made an incredible difference in my ability to enjoy my grandchildren.

Jump to this post

There are still myths about CIs, most of them untrue. I've heard that the longer you haven't heard out of that ear, the less likely it is that a CI will work. Hah…a friend who had lost all hearing by flying through a windshield when he was less than 6 mos. old got a CI when he was in his early 60s…and found it useful almost as soon as it was turned on. There's also a myth that the older you are, the less likely it is to work. Hah, again! A friend in her late 80s hadn't heard well for years, then had a stroke, which further impaired her hearing–but, when the CI was first turned on, she could understand and hear things again. Her husband complained that he couldn't play poker at his house any more, because she now knew how much he was losing! She also had never allowed him to use swear words, but he'd used them liberally during the years she couldn't hear much, so that was another thing he had to change. Actually, he was really proud of her new ability to hear and quickly made the necessary changes.
It IS true, however, that you need to be willing to work to learn to get the most out of the CI, from what I've heard. Even the people who can hear some things almost immediately, need to work on learning to improve their hearing. It's pretty much the same as people who get bifocals in their middle years after never having needed glasses: they need to learn to use them, unlike those of us who've worn glasses most of our lives. When I got my first pair of multi-focal glasses, I was thrilled to learn that trees have leaves, buildings have doors and windows, those big green things on the freeway are actually signs…who would have guessed? I had no trouble adjusting whatsoever, because the gain was so great. Same is true with hearing: the more you gain with an aid or aids or a CI, the more you'll be willing to work to maximize the gain.

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Masks everywhere- banks, Restaurants takeout, etc

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@joyces

Julie, thanks for the encouragement about using an aid in an ear that's pretty close to useless. I was tested for a CI about a year ago, but failed by 5% overall, thanks to an aid in my sorta good ear. When I spent a year not really being able to hear much with my "good" ear, I realized that I was getting some sound from my bad ear, which hasn't heard much for nearly 40 years. Fortunately, thanks to taking mega-doses of HRT to offset Meniere's going bilateral, I've regained much of the hearing I had before going bilateral. Now that I'm stable and have done the first three months of intense VRT, I'm thinking about trying an aid in my bad ear. You've given me another reason to do so! Thank you!

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Thank you Joyces. I hope you have success trying an aid in your 'bad ear'. Keep us posted.

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@joyces

There are still myths about CIs, most of them untrue. I've heard that the longer you haven't heard out of that ear, the less likely it is that a CI will work. Hah…a friend who had lost all hearing by flying through a windshield when he was less than 6 mos. old got a CI when he was in his early 60s…and found it useful almost as soon as it was turned on. There's also a myth that the older you are, the less likely it is to work. Hah, again! A friend in her late 80s hadn't heard well for years, then had a stroke, which further impaired her hearing–but, when the CI was first turned on, she could understand and hear things again. Her husband complained that he couldn't play poker at his house any more, because she now knew how much he was losing! She also had never allowed him to use swear words, but he'd used them liberally during the years she couldn't hear much, so that was another thing he had to change. Actually, he was really proud of her new ability to hear and quickly made the necessary changes.
It IS true, however, that you need to be willing to work to learn to get the most out of the CI, from what I've heard. Even the people who can hear some things almost immediately, need to work on learning to improve their hearing. It's pretty much the same as people who get bifocals in their middle years after never having needed glasses: they need to learn to use them, unlike those of us who've worn glasses most of our lives. When I got my first pair of multi-focal glasses, I was thrilled to learn that trees have leaves, buildings have doors and windows, those big green things on the freeway are actually signs…who would have guessed? I had no trouble adjusting whatsoever, because the gain was so great. Same is true with hearing: the more you gain with an aid or aids or a CI, the more you'll be willing to work to maximize the gain.

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My involvement in HLAA, starting in 1983, gave me a unique opportunity to watch the development of cochlear implants. I knew people, from all over the United States, who were test subjects in early trials. Most had profound hearing loss and struggled with hearing aids, although most also used assistive technology that kept them in the hearing mainstream fairly well. Watching their experience with CIs was amazing. Still, for several years, CIs were considered 'experimental' and no insurers covered them. They were featured in the mainstream media as being 'controversial'. The culturally Deaf population opposed them, and a lot of media attention was directed towards that opposition.

Those early cochlear implants had single 'channels'. They helped with sound and did little to improve clarity. Today's CIs are much more sophisticated. I am grateful that organizations like HLAA were there to push for advancement of a device that was considered by many to be 'an impossible dream'.

There are several people in the Wisconsin HLAA Chapter I participate in who are in their late 80s who have CIs. The number of CI recipients of all ages continues to increase. A lot of things are changing in the 'industry'. Most important, there is HOPE for hard of hearing people who choose to remain in the hearing mainstream.

It very important for those who are struggling with decisions related to progressive hearing loss to talk to others who understand what they are going through from personal experience. It starts with having one's feelings and frustrations validated, and then moves on to being open to learning, and finding unbiased information.

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I know I haven't replied to any of your replies but I've been carefully reading and learning so much! Thanks for all the honest answers, especially you, Julie!

One of the questions I still have is about the use of relay services… normally to what ends are they mostly used for? Can't they be used for example in the case of restaurant takeouts/drive-throughs? Do most of the Deaf community use them? And what are the most common complaints about them?

I'm sorry if these are basic questions or even if I'm being rude… it's just that I'm curious to understand a bit more about Deaf Culture.

Best,
Pedro

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@pedronpaiva

I know I haven't replied to any of your replies but I've been carefully reading and learning so much! Thanks for all the honest answers, especially you, Julie!

One of the questions I still have is about the use of relay services… normally to what ends are they mostly used for? Can't they be used for example in the case of restaurant takeouts/drive-throughs? Do most of the Deaf community use them? And what are the most common complaints about them?

I'm sorry if these are basic questions or even if I'm being rude… it's just that I'm curious to understand a bit more about Deaf Culture.

Best,
Pedro

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Pedro, You are not being rude. You are open to learning! Asking questions is a good way to learn. The original 'relay system' is somewhat antiquated due to all the new apps available on smartphones. Captioned landline phones have been extremely helpful for many people. Now, that technology is also available on cell phones. Some of the smartphone apps do use a middle source to relay messages.

Years ago we were using 'text telephones' or TDDs, which stood for Telephone Device for the Deaf. They could 'talk' to one another as long as the people on both ends of the call were using them. It was all done by typing. The Relay system was used when a middle person was needed to connect the conversations. A relay operator was listening and typing to the person who needed to read the message, and was also relaying it to the other person orally. Keep in mind that some deaf people are oral. Both means of communication were used…oral and written, so the 'relay' point depended on what was needed in each situation.

The speech to text apps available now are amazing.

One of the big concerns, always, is that people who cannot use standard telephone technology, have the option of calling 911 in the event of an emergency. There has always been concern about having 911 relay available. I hope that someone who uses 'relay' will chime in here. I have always been able to hear fairly well on the phone as long as I can use the telecoils in my hearing aid and cochlear processor, so have not needed to use relay. Years ago, I did use a TDD to communicate with friends who needed to use it.

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