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.

Husband got an TV streamer for his HAs - helped all of us. Even though I wore HAs he would have the sound up so high it was hurtful. (I used the sound bar eventually. He can control his sound without it bothering anyone else - goes directly into his ears. He hates closed captions so I hate asking for them and few of the movies we watch have them. I got so I hated watching movies.

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@luvsibes

I am in my early 70's and have had hearing aids for about 6 years. They are helpful in general conversations and activities. However, I have never been able to distinguish sounds (death,debt, or deaf...what was said?!?), learn new languages, and am tone deaf impacting my musical talent greatly! We watch a lot of tv movies and shows and I know subtitles aren't always available and are distracting to others. I miss a lot in movies and shows, hate to keep asking for the punchlines, and tend to just fall asleep as I'm lulled into fatigue trying. I've tried using my wireless earbuds but it cuts off the tv sound for others. Sometimes, I'll be watching and hubs opens a bag of chips and all I hear is the crinkling of the bag. Any ideas of thoughts on this. Thanks everyone!

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@luvsibes Hi there, welcome to 'Connect'. I hope you'll find the experiences of other people with hearing loss helpful. Learning that I was not alone with hearing loss and all the crazies that go with it helped me learn to live well with it. It also motivated me to learn more about technology that goes beyond hearing aids. My sensorineural hearing loss (SNHL) was diagnosed in my 20s, so I've been living with it a long time, as I'm in my 70s like you. So much has changed over the years, and it has helped to be on top of it. I am thankful for my involvement in the Hearing Loss Assn. of America, Inc. (HLAA) for all I've learned. First and foremost, HLAA put me in touch with others who were willing to talk about it, advocate for better technology, and share what they learned with others. http://www.hearingloss.org HLAA is a consumer based non profit organization.

You mention misunderstanding similar words. This is typical with SNHL. We lose our ability to understand specific sounds, primarily consonants. If we figure out what sounds are difficult for us to understand we can gain a slight advantage. You mentioned 'death, debt, deaf'. If can are aware of the context of a conversation, we can usually figure out which word fits. However, the reality is that we will sometimes get it wrong. That's life with hearing loss. It also helps to learn what sounds look alike on the lips. We all lip read whether we realize it or not. Look in the mirror and try it. A good example is P, B. M. They look the same. Pat, Bat, Mat. Mother Brother, Married Buried, etc. It's easy to see how we can get it wrong.

We can get a lot of help from technology that goes beyond hearing aids. Many hearing aids can be fit with hand held extension microphones that make it possible to circumvent a lot of the background noise in social settings. Hearing aids that have telecoils make it possible for us to stream desired sound directly to our hearing aids. Bypassing unwanted background noise helps a great deal. Be sure to find out if your hearing aids have telecoils. Ask your provider to show you how they work. Bluetooth can do this too, but BT adds considerable cost to hearing aids. Telecoils do not.

Most movies do have subtitles (captions). Yes, people who don't need them tend to not like them, but they also don't like having to repeat things to us. My husband adjusted to captioning years ago and it is always on when we watch TV. People get used to it. And, in my humble opinion, the captions should be available on all TVs that are on in public places. Some states have mandated that be the case. In movie theaters there are caption devices that you can check out and use. They are not perfect, but they do work. You have to request those at the ticket office in most places. Have you ever tried those?

In performing arts centers, there should be assistive listening devices available by law. These can be used with headphones. The best way to use them is to have telecoils in your hearing aids. If the PAC has a loop installed, all you have to do is turn the telecoils on in your hearing aids. Viola! It works great.

One other technology that is relatively new and getting better all the time is 'automatic speech recognition' ASR can translate what is being said into text on your phone or tablet. It is amazingly accurate.

If we know what is available, we can help others know how they can help us.

Are you familiar with all these options?

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I am new here. I am 63 with a lifetime of hearing loss. At the beginning, I had severe hearing bilateral hearing loss, and wore hearing aids that rest on my chest in a strapped device and connect with wire to ear molds in my ears. I became very proficient in lip reading and oral communication. My family were all hearing. I went to school for deaf and HOH that focused on oral. We were not taught sign language there, although I now wish we did. I went on to be mainstreamed after first grade to through grade 12. It was very hard. I did not have access to external microphones in the classroom. I made do with sitting upfront closest to teacher, BTE hearing aids, lip reading, voluntary sharing of notes by students with me on specialized carbon lined paper. In college, I was able to get a profession note taker, and a powerful body aid that I wore with headphones. After college, worked at a bank, got married, had two beautiful healthy children and a wonderful hearing service dog. Later got into a accounting career. I now have new oticon exceed hearing aids and now trying to find a way to make my older Roger easy pen to work with it. My Oticon Prostreamer does not work with these aids, and therefore I cannot use the roger pen as I done before. I am not working now while the virus is still out there.

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@annab21

I am new here. I am 63 with a lifetime of hearing loss. At the beginning, I had severe hearing bilateral hearing loss, and wore hearing aids that rest on my chest in a strapped device and connect with wire to ear molds in my ears. I became very proficient in lip reading and oral communication. My family were all hearing. I went to school for deaf and HOH that focused on oral. We were not taught sign language there, although I now wish we did. I went on to be mainstreamed after first grade to through grade 12. It was very hard. I did not have access to external microphones in the classroom. I made do with sitting upfront closest to teacher, BTE hearing aids, lip reading, voluntary sharing of notes by students with me on specialized carbon lined paper. In college, I was able to get a profession note taker, and a powerful body aid that I wore with headphones. After college, worked at a bank, got married, had two beautiful healthy children and a wonderful hearing service dog. Later got into a accounting career. I now have new oticon exceed hearing aids and now trying to find a way to make my older Roger easy pen to work with it. My Oticon Prostreamer does not work with these aids, and therefore I cannot use the roger pen as I done before. I am not working now while the virus is still out there.

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I was able to use my old Roger Select and Roger Pen to connect to the Roger My Link neck loop which transmits by Induction loop (hearing loop) to my he Oticon hearing aids t-coils. It isn't really handy with all the connections and switching that needs to be done but it does work.

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@julieo4

@luvsibes Hi there, welcome to 'Connect'. I hope you'll find the experiences of other people with hearing loss helpful. Learning that I was not alone with hearing loss and all the crazies that go with it helped me learn to live well with it. It also motivated me to learn more about technology that goes beyond hearing aids. My sensorineural hearing loss (SNHL) was diagnosed in my 20s, so I've been living with it a long time, as I'm in my 70s like you. So much has changed over the years, and it has helped to be on top of it. I am thankful for my involvement in the Hearing Loss Assn. of America, Inc. (HLAA) for all I've learned. First and foremost, HLAA put me in touch with others who were willing to talk about it, advocate for better technology, and share what they learned with others. http://www.hearingloss.org HLAA is a consumer based non profit organization.

You mention misunderstanding similar words. This is typical with SNHL. We lose our ability to understand specific sounds, primarily consonants. If we figure out what sounds are difficult for us to understand we can gain a slight advantage. You mentioned 'death, debt, deaf'. If can are aware of the context of a conversation, we can usually figure out which word fits. However, the reality is that we will sometimes get it wrong. That's life with hearing loss. It also helps to learn what sounds look alike on the lips. We all lip read whether we realize it or not. Look in the mirror and try it. A good example is P, B. M. They look the same. Pat, Bat, Mat. Mother Brother, Married Buried, etc. It's easy to see how we can get it wrong.

We can get a lot of help from technology that goes beyond hearing aids. Many hearing aids can be fit with hand held extension microphones that make it possible to circumvent a lot of the background noise in social settings. Hearing aids that have telecoils make it possible for us to stream desired sound directly to our hearing aids. Bypassing unwanted background noise helps a great deal. Be sure to find out if your hearing aids have telecoils. Ask your provider to show you how they work. Bluetooth can do this too, but BT adds considerable cost to hearing aids. Telecoils do not.

Most movies do have subtitles (captions). Yes, people who don't need them tend to not like them, but they also don't like having to repeat things to us. My husband adjusted to captioning years ago and it is always on when we watch TV. People get used to it. And, in my humble opinion, the captions should be available on all TVs that are on in public places. Some states have mandated that be the case. In movie theaters there are caption devices that you can check out and use. They are not perfect, but they do work. You have to request those at the ticket office in most places. Have you ever tried those?

In performing arts centers, there should be assistive listening devices available by law. These can be used with headphones. The best way to use them is to have telecoils in your hearing aids. If the PAC has a loop installed, all you have to do is turn the telecoils on in your hearing aids. Viola! It works great.

One other technology that is relatively new and getting better all the time is 'automatic speech recognition' ASR can translate what is being said into text on your phone or tablet. It is amazingly accurate.

If we know what is available, we can help others know how they can help us.

Are you familiar with all these options?

Jump to this post

Thank you, Julie. My hubs is getting used to closed captioning. It does help. I find that I miss alot of the nuances of the dialogue without it, especially punch lines or clues in a mystery! Without them, I find that I lull myself to sleep from the fatigue of trying to follow the plot. My hearing aides are about 5 yrs old. They do not have blue tooth. I have blue tooth ear buds which I use for my tablet, etc. I tried connecting them to the tv and it was great except hubs could not hear the tv! It cut out the sound entirely for him. So, I'm exploring my next steps. Just browsing here, I wonder if it's time for me to go to a MD for audiology. My current audiologist says there's not much that can be done for tinnitus and the "loose wire" type of cognitive processing I have with speech.

REPLY
@annab21

I am new here. I am 63 with a lifetime of hearing loss. At the beginning, I had severe hearing bilateral hearing loss, and wore hearing aids that rest on my chest in a strapped device and connect with wire to ear molds in my ears. I became very proficient in lip reading and oral communication. My family were all hearing. I went to school for deaf and HOH that focused on oral. We were not taught sign language there, although I now wish we did. I went on to be mainstreamed after first grade to through grade 12. It was very hard. I did not have access to external microphones in the classroom. I made do with sitting upfront closest to teacher, BTE hearing aids, lip reading, voluntary sharing of notes by students with me on specialized carbon lined paper. In college, I was able to get a profession note taker, and a powerful body aid that I wore with headphones. After college, worked at a bank, got married, had two beautiful healthy children and a wonderful hearing service dog. Later got into a accounting career. I now have new oticon exceed hearing aids and now trying to find a way to make my older Roger easy pen to work with it. My Oticon Prostreamer does not work with these aids, and therefore I cannot use the roger pen as I done before. I am not working now while the virus is still out there.

Jump to this post

@annab21 Thank you for sharing your story. It is similar to mine, but my hearing loss wasn't diagnosed until I was in college. I have an older Roger Pen that can be used with my Widex hearing aid with a streamer that came with the Roger Pen. It's a shame that some of these accessories are not universal. I'm not familiar with the Oticon Prostreamer.

You have worked very hard to remain in and succeed in the hearing mainstream in spite of your profound hearing loss. That takes courage. Congratulations to you for all you have achieved.

A true game changer for me was getting a cochlear implant. I now use both a hearing aid and
the CI. They both work remarkably well together. Have you considered a cochlear implant?

REPLY
@luvsibes

Thank you, Julie. My hubs is getting used to closed captioning. It does help. I find that I miss alot of the nuances of the dialogue without it, especially punch lines or clues in a mystery! Without them, I find that I lull myself to sleep from the fatigue of trying to follow the plot. My hearing aides are about 5 yrs old. They do not have blue tooth. I have blue tooth ear buds which I use for my tablet, etc. I tried connecting them to the tv and it was great except hubs could not hear the tv! It cut out the sound entirely for him. So, I'm exploring my next steps. Just browsing here, I wonder if it's time for me to go to a MD for audiology. My current audiologist says there's not much that can be done for tinnitus and the "loose wire" type of cognitive processing I have with speech.

Jump to this post

Good to hear you are able to use the captioning. Without it I would be lost! Hearing aids keep getting better. BlueTooth is a relatively new feature that adds considerable cost to new hearing aids.

Do the aids you are using have telecoils? Did your audiologist tell you how to use them if you have them? They work as well as BT does but may require using a personal neckloop with the audio devices you use. (TV, tablet, cell phone, etc.) A neckloop costs around $50. Telecoils in hearing aids add about $10. They should be standard even when BT is included.

Many people I know have room sized hearing loops installed in their homes for TV watching. That doesn't affect the sound system for others. Are you familiar with hearing loops and telecoils?

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Hopefully I’m the only sucker out there, but if not take note. I see ads for on line or mail order hearing aids and, silly me, I laid out a lot more than I should have and bought a pair and I now have a pair of light weight paperweights. Despite what they say in their ads, there is no way they can be adjusted on line. I learned that the hard way, so caveat emptor….buyer be ware‼️

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@julieo4

@annab21 Thank you for sharing your story. It is similar to mine, but my hearing loss wasn't diagnosed until I was in college. I have an older Roger Pen that can be used with my Widex hearing aid with a streamer that came with the Roger Pen. It's a shame that some of these accessories are not universal. I'm not familiar with the Oticon Prostreamer.

You have worked very hard to remain in and succeed in the hearing mainstream in spite of your profound hearing loss. That takes courage. Congratulations to you for all you have achieved.

A true game changer for me was getting a cochlear implant. I now use both a hearing aid and
the CI. They both work remarkably well together. Have you considered a cochlear implant?

Jump to this post

Hi Julie, Thank you for your encouraging, kind words and info about the Roger pen. I currently have oticon pro streamer, oticon mini microphone, Roger easy pen, and phonak universal roger X for my older Oticon non-Bluetooth aids. I had tried to use all with my t-coil program on my exceed aids but can’t get sound. My HIS could not help with that. I have thought about cochlear implants, and will consider it later down the road. The idea of drilling into my head gives me pause.

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@annab21

Hi Julie, Thank you for your encouraging, kind words and info about the Roger pen. I currently have oticon pro streamer, oticon mini microphone, Roger easy pen, and phonak universal roger X for my older Oticon non-Bluetooth aids. I had tried to use all with my t-coil program on my exceed aids but can’t get sound. My HIS could not help with that. I have thought about cochlear implants, and will consider it later down the road. The idea of drilling into my head gives me pause.

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Your HIS may not understand all the technology you mention...unfortunately. We learn a lot more about technology from the people who use it than from the people who sell hearing aids.

I know so many people with cochlear implants, but I too, was hesitant to go that route back in 2005. My only regret is that I didn't do it sooner. It has made a remarkable difference. I returned to work full time 5 days after the surgery. Of course, I couldn't hear much then since the CI had not yet been activated. No pain and fast healing. It was a real game changer for me. PS: The surgery was much easier than I thought it would be. Do you personally know anyone who has had a CI?

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