Hearing Loss: Come introduce yourself and connect with others

Welcome to the Hearing Loss group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with hearing loss, and friends and family supporters. Whether you were born deaf or hard of hearing, experienced hearing loss after birth or with aging, it helps to connect with others. Together we can learn from each other, support one another and share stories about living with hearing loss, coping with challenges and celebrating milestones.

Let’s chat. Why not start by introducing yourself? What is your hearing loss experience? Got a question, tip or story to share?

Interested in more discussions like this? Go to the Hearing Loss Support Group.

@anniebanannie

Hello there—I am Anne and my hearing loss began somewhere near my 60’s. At first, I worked with adult college students tutoring English and I begin asking them to speak up. I thought they were perhaps shy and uncomfortable addressing me. Little did I know, nor did they that my hearing them was the issue. Oh yes, , we unknowingly dealt with it. It wasn’t until I was retired and well into my 60’s that I realized my hearing was an issue for me. At first, I tried hearing aids and did not do well adjusting to having to wear them and turned them back in! I wasn’t going to pay such an outlandish price if the didn’t help me. It took another year before I decided to try again. Well, here I am at 86 and literally hear nothing but perhaps at times, only certain levels of sounds without them in my ears. I have stopped attending church as I only hear the ministers sermon in bits and pieces —the music but no scripture readings. I go back for coffee and it is over whelming the voices coming into my ears from every direction. Holy moly! If I want to feel sorry for myself keep going. It is beyond frustrating. I try to be social with friends but find I’d rather not go to restaurants to visit and have social time. I run on a different track mostly. Phone conversations are hopeless, although I may get bits and pieces being relayed to me. I find I’m nearly a hopeless case. The best thing I have going for me is I can laugh at myself and sometimes it’s pretty funny (not that I don’t get it) but what I think I get. I often remember getting so tickled at my mom and what she thought she heard, not laughing at her (I hope) but laughing with her. Paybacks! Mercy. That’s my experience and I believe I could write a book on the effects of hearing loss in a person’s life. Tough going.

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I am so sorry to hear about all your frustrations. I relate to them, but I was much younger when I was going through them. I'm thankful for all I've learned from other people with hearing loss. I'm sad that the healthcare pros who work with people who need hearing help are lax in providing them with information that can help more than simply fitting a pair of hearing aids! Some are wonderful at counseling, but many simply won't take the time. Here's where my beef lies:
1. Hearing assistive technology that goes beyond hearing aids is extremely important.
2. That technology does not automatically come with those expensive hearing aids.
3. A component called a 'telecoil' that is included in some hearing aids can connect its user to public address systems in worship centers, performing arts facilities, meeting rooms, etc. It can also connect you to your computer, to other personal audio devices, etc. BUT, the providers/sellers of hearing aids don't take time to tell people about this option. Further, they don't activate it in the hearing instruments they sell unless asked to do so. It has to be activated.
4. Unfortunately, many public venues do not have the 'connecting link' that works with those telecoils. WE HAVE TO ADVOCATE FOR THOSE SOUND SYSTEMS. THEY ARE A RIGHT UNDER THE AMERICANS WITH DISABILITIES ACT. But they don't have to be provided unless they are requested.
5. People with hearing loss can't advocate or educate on things they don't know about.
6. The push right now is for BlueTooth. BT costs a lot to add to hearing instruments. Telecoils cost no more than $15 and are usually there but not turned on. Go figure. We need both.
7. Seriously, nearly everyone with progressive sensorineural hearing loss can benefit from the available technology. The secret is bringing the sound from a PA system directly to the ear without background noise. BT and telecoils both do that, but BT is focused on cell phones, TVs, etc. It doesn't work in those larger places.
8. Check the HLAA website when you have time to learn. There is so much information there. It's there because 'we the people with hearing loss' have put it there.

I encourage anyone who is struggling with life due to hearing loss to go to a cochlear implant center to learn if a cochlear implant can help you. CIs are covered by Medicare. They have come so far in the past decade it's unbelievable. I use both a CI and a hearing aid. It has been a very positive and remarkable journey. I feel blessed.

The best teachers are those who know from personal experience Are you open to learning?

REPLY

Thank you for the information you have provided. I assumed the tellecoil was in all hearing aids! I certainly will discuss this with my provider who works with me! I actually believe in the ear sound and my headphones I use have perhaps increased my hearing lose as I need them loud to hear even with that assistance. That happens to be increased decibels right next to my ear drums! Others hear the sound they omit! Again, thank you for taking the time to text your information! I will attempt to locate the website you recommend!

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I have been hearing impaired since childhood, perhaps a genetic thing, as my mother was profoundly hearing impaired as is my oldest sister. Remarkably, I made it through college without a hearing aid, simply for the sake of vanity. I remember wearing a hearing aid for the first time post college, and the sound of leaves rustling was so new to me, as I had never heard this sound before, as I kept glancing over my shoulder while walking.
When I was a kid, I was teased without mercy because of my hearing loss, and I will always remember this game we played in elementary school, "Telephone." One kid starts with a word or phrase and whispers it to the next person in the circle. Even at a tender age of 6 or 8 I got worked up because I knew I would be unable to hear.
Sadly, my mother ignored the school nurse's recommendations that I get a hearing aid, and she even went so far as writing to the school district ordering them to never test my hearing again.

One other thing that probably sounds horribly offensive at its face, but is not meant to me, is that growing up I made it my mission not to sound like my mother when I spoke. As I mentioned she was profoundly hearing impaired and you could tell simply by the way she spoke. I do not mean this as an insult to the deaf or hard of hearing, but I did have some speech therapy during grade school, and this helped me with my voice. I cannot tell you the number of people who tell me they are surprised at the fact that I am fairly deaf without my hearing aid, as I have a soft voice. Also, it has been my experience that many with a hearing loss have difficulty admitting so. The fellow who lived with me for about a month kept telling me to speak up. Yet when I asked others if they could hear me when I spoke at my normal tone, they had no problem hearing me, at which point I told the fool (he really was one) that the problem with not hearing me was more about him than I. I am not sure people realize how much energy it takes to "shout."

However, things were much different 50 plus years ago, and now hearing aids are almost in fashion, so to speak. Being in large crowds is my most difficult place to hear, and I do the best I can with one hearing aid, as only one of my ears really "works." I lip read, something I have done since childhood. Even though deafness and hard of hearing are silent disabilities that are more prevalent now, I still encounter situations when I cannot hear, and the speaker looks at me like I am a moron. I used to be afraid to ask people to speak up, as I thought it was rude; however, now days with so many important things taking place on the phone, I demand that the person I am talking to "speak up" or "speak clearly."

My sister spent thousands of dollars on the most tech hearing aid on the market, yet she still has a problem. Why? She waited too long to get a hearing aid. Vanity. I on the other hand, was "adopted" by my hearing aid dealer who provided me with a hearing aid at a reduced cost. While it may not have all the bells and whistles that the newer models have, at the very least I can hear for the most part.

While my health insurer does provide coverage for hearing aids, the hearing test is conducted over the phone. Go figure. If you happen to also have tinnitus, every "beep" sounds the same to me. While people with a mild hearing loss might benefit from over the counter hearing aids, I cannot. Besides that, I think everyone should get a hearing test, most of which are free if you go to the right place as I do. There is no longer the shame attached with being hard of hearing. A cochlear implant has been offered to me, however that is not the answer for someone with me. One still has to relearn how to hear, and listening to music is difficult at best, per a friend that has one. She cannot even speak on the phone. However, I understand this is a personal decision, and probably if I did not enjoy music as much as I do, I might have opted for the implant when it was offered.
Coincidentally, I am seeing the ENT specialist this week and plan to revisit the implant idea just out of curiousity, although my hearing is the least of my problems presently.

Thank you for reading this.

REPLY
@frances007

I have been hearing impaired since childhood, perhaps a genetic thing, as my mother was profoundly hearing impaired as is my oldest sister. Remarkably, I made it through college without a hearing aid, simply for the sake of vanity. I remember wearing a hearing aid for the first time post college, and the sound of leaves rustling was so new to me, as I had never heard this sound before, as I kept glancing over my shoulder while walking.
When I was a kid, I was teased without mercy because of my hearing loss, and I will always remember this game we played in elementary school, "Telephone." One kid starts with a word or phrase and whispers it to the next person in the circle. Even at a tender age of 6 or 8 I got worked up because I knew I would be unable to hear.
Sadly, my mother ignored the school nurse's recommendations that I get a hearing aid, and she even went so far as writing to the school district ordering them to never test my hearing again.

One other thing that probably sounds horribly offensive at its face, but is not meant to me, is that growing up I made it my mission not to sound like my mother when I spoke. As I mentioned she was profoundly hearing impaired and you could tell simply by the way she spoke. I do not mean this as an insult to the deaf or hard of hearing, but I did have some speech therapy during grade school, and this helped me with my voice. I cannot tell you the number of people who tell me they are surprised at the fact that I am fairly deaf without my hearing aid, as I have a soft voice. Also, it has been my experience that many with a hearing loss have difficulty admitting so. The fellow who lived with me for about a month kept telling me to speak up. Yet when I asked others if they could hear me when I spoke at my normal tone, they had no problem hearing me, at which point I told the fool (he really was one) that the problem with not hearing me was more about him than I. I am not sure people realize how much energy it takes to "shout."

However, things were much different 50 plus years ago, and now hearing aids are almost in fashion, so to speak. Being in large crowds is my most difficult place to hear, and I do the best I can with one hearing aid, as only one of my ears really "works." I lip read, something I have done since childhood. Even though deafness and hard of hearing are silent disabilities that are more prevalent now, I still encounter situations when I cannot hear, and the speaker looks at me like I am a moron. I used to be afraid to ask people to speak up, as I thought it was rude; however, now days with so many important things taking place on the phone, I demand that the person I am talking to "speak up" or "speak clearly."

My sister spent thousands of dollars on the most tech hearing aid on the market, yet she still has a problem. Why? She waited too long to get a hearing aid. Vanity. I on the other hand, was "adopted" by my hearing aid dealer who provided me with a hearing aid at a reduced cost. While it may not have all the bells and whistles that the newer models have, at the very least I can hear for the most part.

While my health insurer does provide coverage for hearing aids, the hearing test is conducted over the phone. Go figure. If you happen to also have tinnitus, every "beep" sounds the same to me. While people with a mild hearing loss might benefit from over the counter hearing aids, I cannot. Besides that, I think everyone should get a hearing test, most of which are free if you go to the right place as I do. There is no longer the shame attached with being hard of hearing. A cochlear implant has been offered to me, however that is not the answer for someone with me. One still has to relearn how to hear, and listening to music is difficult at best, per a friend that has one. She cannot even speak on the phone. However, I understand this is a personal decision, and probably if I did not enjoy music as much as I do, I might have opted for the implant when it was offered.
Coincidentally, I am seeing the ENT specialist this week and plan to revisit the implant idea just out of curiousity, although my hearing is the least of my problems presently.

Thank you for reading this.

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Thank you for sharing this.

REPLY
@frances007

I have been hearing impaired since childhood, perhaps a genetic thing, as my mother was profoundly hearing impaired as is my oldest sister. Remarkably, I made it through college without a hearing aid, simply for the sake of vanity. I remember wearing a hearing aid for the first time post college, and the sound of leaves rustling was so new to me, as I had never heard this sound before, as I kept glancing over my shoulder while walking.
When I was a kid, I was teased without mercy because of my hearing loss, and I will always remember this game we played in elementary school, "Telephone." One kid starts with a word or phrase and whispers it to the next person in the circle. Even at a tender age of 6 or 8 I got worked up because I knew I would be unable to hear.
Sadly, my mother ignored the school nurse's recommendations that I get a hearing aid, and she even went so far as writing to the school district ordering them to never test my hearing again.

One other thing that probably sounds horribly offensive at its face, but is not meant to me, is that growing up I made it my mission not to sound like my mother when I spoke. As I mentioned she was profoundly hearing impaired and you could tell simply by the way she spoke. I do not mean this as an insult to the deaf or hard of hearing, but I did have some speech therapy during grade school, and this helped me with my voice. I cannot tell you the number of people who tell me they are surprised at the fact that I am fairly deaf without my hearing aid, as I have a soft voice. Also, it has been my experience that many with a hearing loss have difficulty admitting so. The fellow who lived with me for about a month kept telling me to speak up. Yet when I asked others if they could hear me when I spoke at my normal tone, they had no problem hearing me, at which point I told the fool (he really was one) that the problem with not hearing me was more about him than I. I am not sure people realize how much energy it takes to "shout."

However, things were much different 50 plus years ago, and now hearing aids are almost in fashion, so to speak. Being in large crowds is my most difficult place to hear, and I do the best I can with one hearing aid, as only one of my ears really "works." I lip read, something I have done since childhood. Even though deafness and hard of hearing are silent disabilities that are more prevalent now, I still encounter situations when I cannot hear, and the speaker looks at me like I am a moron. I used to be afraid to ask people to speak up, as I thought it was rude; however, now days with so many important things taking place on the phone, I demand that the person I am talking to "speak up" or "speak clearly."

My sister spent thousands of dollars on the most tech hearing aid on the market, yet she still has a problem. Why? She waited too long to get a hearing aid. Vanity. I on the other hand, was "adopted" by my hearing aid dealer who provided me with a hearing aid at a reduced cost. While it may not have all the bells and whistles that the newer models have, at the very least I can hear for the most part.

While my health insurer does provide coverage for hearing aids, the hearing test is conducted over the phone. Go figure. If you happen to also have tinnitus, every "beep" sounds the same to me. While people with a mild hearing loss might benefit from over the counter hearing aids, I cannot. Besides that, I think everyone should get a hearing test, most of which are free if you go to the right place as I do. There is no longer the shame attached with being hard of hearing. A cochlear implant has been offered to me, however that is not the answer for someone with me. One still has to relearn how to hear, and listening to music is difficult at best, per a friend that has one. She cannot even speak on the phone. However, I understand this is a personal decision, and probably if I did not enjoy music as much as I do, I might have opted for the implant when it was offered.
Coincidentally, I am seeing the ENT specialist this week and plan to revisit the implant idea just out of curiousity, although my hearing is the least of my problems presently.

Thank you for reading this.

Jump to this post

Your post is interesting. While I would like to believe that hearing aid are 'in style' and hearing loss isn't stigmatized or shamed any more. Those issues continue to prevent many people from seeking help, even today. The high cost of hearing aids is a big barrier too.

I'm glad you plan to see an ENT specialist. I hope s/he provides up to date information about cochlear implants for you. The success rate is much higher than it was even a few years ago.

Has your hearing been tested with real ear measurement and also with speech perception in noise? Do you use hearing assistive technology that goes beyond your hearing aids when you're in noisy settings? Let us know how your ENT visit goes.

REPLY
@julieo4

I am so sorry to hear about all your frustrations. I relate to them, but I was much younger when I was going through them. I'm thankful for all I've learned from other people with hearing loss. I'm sad that the healthcare pros who work with people who need hearing help are lax in providing them with information that can help more than simply fitting a pair of hearing aids! Some are wonderful at counseling, but many simply won't take the time. Here's where my beef lies:
1. Hearing assistive technology that goes beyond hearing aids is extremely important.
2. That technology does not automatically come with those expensive hearing aids.
3. A component called a 'telecoil' that is included in some hearing aids can connect its user to public address systems in worship centers, performing arts facilities, meeting rooms, etc. It can also connect you to your computer, to other personal audio devices, etc. BUT, the providers/sellers of hearing aids don't take time to tell people about this option. Further, they don't activate it in the hearing instruments they sell unless asked to do so. It has to be activated.
4. Unfortunately, many public venues do not have the 'connecting link' that works with those telecoils. WE HAVE TO ADVOCATE FOR THOSE SOUND SYSTEMS. THEY ARE A RIGHT UNDER THE AMERICANS WITH DISABILITIES ACT. But they don't have to be provided unless they are requested.
5. People with hearing loss can't advocate or educate on things they don't know about.
6. The push right now is for BlueTooth. BT costs a lot to add to hearing instruments. Telecoils cost no more than $15 and are usually there but not turned on. Go figure. We need both.
7. Seriously, nearly everyone with progressive sensorineural hearing loss can benefit from the available technology. The secret is bringing the sound from a PA system directly to the ear without background noise. BT and telecoils both do that, but BT is focused on cell phones, TVs, etc. It doesn't work in those larger places.
8. Check the HLAA website when you have time to learn. There is so much information there. It's there because 'we the people with hearing loss' have put it there.

I encourage anyone who is struggling with life due to hearing loss to go to a cochlear implant center to learn if a cochlear implant can help you. CIs are covered by Medicare. They have come so far in the past decade it's unbelievable. I use both a CI and a hearing aid. It has been a very positive and remarkable journey. I feel blessed.

The best teachers are those who know from personal experience Are you open to learning?

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Yesterday my audiologist told me about Auracast. It is a Bluetooth product, but different, in that instead of the one-to-one connection with Bluetooth it allows one-to-many. Thus soon we will be able to hear in airports, planes, etc., and theatres will be equipped with Auracast, which has much better bandwidth than a hearing loop (T-coil). Auracast is an a ReSound model now, and will be coming to others, my audiologist said. Although this technology will not change our hearing loss, it may well change how we go about our lives. I am very excited.
https://www.techradar.com/audio/wireless-headphones/i-tried-bluetooth-auracast-and-itll-change-our-relationship-with-headphones

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@pkalkstein

Yesterday my audiologist told me about Auracast. It is a Bluetooth product, but different, in that instead of the one-to-one connection with Bluetooth it allows one-to-many. Thus soon we will be able to hear in airports, planes, etc., and theatres will be equipped with Auracast, which has much better bandwidth than a hearing loop (T-coil). Auracast is an a ReSound model now, and will be coming to others, my audiologist said. Although this technology will not change our hearing loss, it may well change how we go about our lives. I am very excited.
https://www.techradar.com/audio/wireless-headphones/i-tried-bluetooth-auracast-and-itll-change-our-relationship-with-headphones

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Thank you for sharing information about Auracast. There was an excellent presentation on Auracast at the national HLAA convention last summer. Representatives from ReSound & Cochlear Corporation were presenters.

I have Auracast built into my cochlear implant processor; the N8 device by Cochlear Corporation. However, they made it quite clear that it will not be usable in the foreseeable future; think maybe in 5 or 6 years. ReSound and Cochlear Corp. work together so it's logical that both will be frontrunners in Auracast technology.

Meanwhile, telecoils remain the best bet for connectivity for events in venues that have met standards for communication access. Insist that your new hearing aids have functional telecoils and BT/Auracast. The future isn't quite now, but it's coming. Are you currently a telecoil/hearing loop user?

REPLY
@julieo4

Thank you for sharing information about Auracast. There was an excellent presentation on Auracast at the national HLAA convention last summer. Representatives from ReSound & Cochlear Corporation were presenters.

I have Auracast built into my cochlear implant processor; the N8 device by Cochlear Corporation. However, they made it quite clear that it will not be usable in the foreseeable future; think maybe in 5 or 6 years. ReSound and Cochlear Corp. work together so it's logical that both will be frontrunners in Auracast technology.

Meanwhile, telecoils remain the best bet for connectivity for events in venues that have met standards for communication access. Insist that your new hearing aids have functional telecoils and BT/Auracast. The future isn't quite now, but it's coming. Are you currently a telecoil/hearing loop user?

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No, I don't have telecoils in my Phonak Lumity aids. I was actually asking about telecoils when my audiologist told me what I have reported. I'll wait till Auracast is in the Phonak aids. Thanks for the report!

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@pkalkstein

No, I don't have telecoils in my Phonak Lumity aids. I was actually asking about telecoils when my audiologist told me what I have reported. I'll wait till Auracast is in the Phonak aids. Thanks for the report!

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In most hearing aids, Telecoils have to be activated by the provider. Often the push is on BT and telecoils are ignored. You may want to ask your audiologist IF your new hearing aids have them. Most everyone who uses telecoils will say they double the value of their hearing aids.

Are you aware of the Phonak Roger assistive accessories? If you have difficulty understanding speech in noisy environments? The Roger device helps a great deal but it's costly.

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I'm unable to understand deep male voices through my Oticon more 1 hearing aids that have custom ear molds with tiny vents. Furthermore, music doesn't sound right whether streamed or otherwise. Also missing many sounds like creaking wooden floor boards, cars approaching behind me, airplanes flying overhead etc.

I can understand male voices slightly better when I put my finger in both ears albeit with some occlusion.

My audiologist programmed my hearing in Genie software and accepted default settings recommended by the software.

I would like to hear from anyone who has experienced similar issues or anyone who can offer Genie software settings (that I can take to my audiologist) for adjusting my hearing aids.

My audiogram is enclosed.

Thank you.

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