Need for advocating now for hearing loss

Posted by arrowshooter @arrowshooter, Aug 19, 2020

We need to advocate for ourselves NOW.

I am an advocate for hearing loops and I just communicated with my local bank about assistive systems for people with hearing loss. The bank officer was polite and listened but was generally uninterested because THEY HAVE NOT HAD ANY COMPLAINTS. This little bank has about 10 locations and no one has complained about using the drive-up windows with the speaker systems that are very difficult to understand especially if there are other cars running and traffic going by. We talked about counter-top loop systems to use in the lobby and he said no one has ever complained about not being able to hear.

During this COVID pandemic we are experiencing more situations that make it more difficult to communicate (masks, plastic shields, speaker systems, etc). People assume their systems are OK as long as no one ever complains. Asking for some to repeat or speak louder/slower is not a complaint. It is just accepted practice. As people with hearing loss we expect to have trouble communicating so that trouble becomes common practice to us. We deal with it or around it.

Of course there is a danger that if we complain now our complaints will be dismissed as “caused by masks or plastic shields”. Those things only make a bad situation worse for us. We have to dispel the common notion that hearing aids restore everyone to normal hearing.

As I write this post I think of the explosive thread on this forum about the medical professions reluctance to accommodate people with hearing loss. The medical care people are only one group who ignores people with hearing loss. But the disregard of people with hearing loss is universal.

Maybe we are the ones at fault.

@barbb

Your last sentence here, I think is a real kicker…about educating ourselves. I, for one, was hardly enthusiastic really, about doing this because I had enough going on in my life so that the last thing I needed was yet another project to be involved with. Someone on the list recently said something about a manual (for something specific – was it hearing aids?). Can we think of a kind of simple. somewhat entertaining, introductory manual-like piece of information to help guide people? As opposed to just "search the internet"? Actually, I think Katherine Bouton's latest book, "Living with Hearing Loss" comes pretty close. I'm sure you might have suggestions for a basic reading list?

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Here are a couple of links that may be helpful for people seeking basic information about what is available to help with hearing loss.

https://www.hearingloss.org/hearing-help/ https://www.hearingloss.org/hearing-help/technology/hat/ "Hat" stands for hearing assistive technology.

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@julieo4

THIS SAYS IT ALL….OR AT LEAST MOST OF IT! Yes, I was 'shouting' with those CAPS.

Hard of hearing people have two big problems that are chronic:

1. As a group, hard of hearing people don't know what can help them beyond hearing aids which are considered by society to be a 'solution'. We, who use hearing aids know they are aids. They help, but do not resolve the problem. The 'solution is far more complex. Finding solutions means taking control, educating oneself, and not being led by advertising that markets denial and promises far more than products can provide.

2. They don't realize that change that comes through education & advocacy begins at the grass roots level. In order to solve a problem, the people who are affected by it must become involved in finding a solution.

As long as most of our collective energy is spent denying we have hearing loss and/or hiding it because we're embarrassed by it, progress in effecting change will be difficult and long. We have to get off our butts and speak up. We have to tell people what we need. First, we must know what we need.

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First of all, thank you to Mayo Connect for introducing me to this site. I just became a HLAA member. I wish there was a Milwaukee chapter. Next, I want to applaud all if you for your efforts on behalf of us with hearing loss. For the first time in along time, I feel slightly optimistic about navigating through this annoying hindrance of being able to hear but not understand what is being said.

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It definitely helps to 'talk' to others who 'get it'! Welcome to HLAA. I have good news for you. The is a Milwaukee Chapter. It's called the Metro Milwaukee Chapter. They meet at the Wauwatosa Library when regular meetings are held. There's chapter information at the HLAA Wisconsin website. http://www.hlaawi.org Wisconsin chapters are located in Milwaukee, Madison, Appleton, Door County and Platteville. Currently, Fox Valley & Madison are holding meetings via Zoom that are open to anyone who wants to attend. Let me know if that interests you. So much to learn. Feel free to send me a personal message.

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@julieo4

It definitely helps to 'talk' to others who 'get it'! Welcome to HLAA. I have good news for you. The is a Milwaukee Chapter. It's called the Metro Milwaukee Chapter. They meet at the Wauwatosa Library when regular meetings are held. There's chapter information at the HLAA Wisconsin website. http://www.hlaawi.org Wisconsin chapters are located in Milwaukee, Madison, Appleton, Door County and Platteville. Currently, Fox Valley & Madison are holding meetings via Zoom that are open to anyone who wants to attend. Let me know if that interests you. So much to learn. Feel free to send me a personal message.

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Thanks for the Milwaukee link. I’m new to this organization so I’ll have to get up to speed. I’m trying to figure out a way to understand my TV. Sometimes CC is too fast for me. I know there must be some reasonably priced technology out there that can help me. I just have to find it and figure it out. I’m so happy I found this website. It gives me hope.

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@rosemh @julieo4 I'm so glad Julie found you a Milwaukee Chapter! How did you come to think there was no such chapter?

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@rosemh

Thanks for the Milwaukee link. I’m new to this organization so I’ll have to get up to speed. I’m trying to figure out a way to understand my TV. Sometimes CC is too fast for me. I know there must be some reasonably priced technology out there that can help me. I just have to find it and figure it out. I’m so happy I found this website. It gives me hope.

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@rosemh I count myself as still a relative newbie here also, although I am active with HLAA. I also count myself as relatively untalented with tech things, including TV! And so I have posed questions related to tech stuff here and have gotten some very helpful replies.

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@barbb

@rosemh @julieo4 I'm so glad Julie found you a Milwaukee Chapter! How did you come to think there was no such chapter?

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I went to the HLAA website, typed in Milwaukee on the interactive map, and no results came up. I must have done something wrong. But now I know there is one. Hurrah!

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@barbb

@rosemh I count myself as still a relative newbie here also, although I am active with HLAA. I also count myself as relatively untalented with tech things, including TV! And so I have posed questions related to tech stuff here and have gotten some very helpful replies.

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Welcome to the forum. You sound like a very typical member. That is struggling with technology and looking for information. That's what happens here.

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Just reading the helpful banter and knowledgable responses has helped me so much. I struggle with depression because of the heating loss. My loss has been gradual, having started in my late twenties, I'm in my seventies now, but in about the last year it has gotten much worse. At my last hearing test, I was told that I'm not far from being profoundly impaired and told I might want to check with an ENT doctor. Thank heaven she told me that. I saw the ENT doctor and he sent me to a CI implant doctor. That made me think I need to learn more and there must be a lot of information on the internet that I haven't seen. I started spending time looking for and reading about hearing loss. I found and joined HLAA and found you. I'm not alone anymore.

From you I learned I should get a telecoil if I get a new aid, researched my aids and found out I don't have one. I also found out from you about Real Ear Measurement. I have gone to the same audiologist for over ten years and have never been told about an REM or about a telecoil. I have purchased two hearing aids two separate times from him. From reviews I thought this was a good audiologist and that I was getting the best treatment I could get.

This week I was tested for a CI and found out I don't quality. I was told 40 is the cutoff and my left ear measured 41. My right ear is in the 50's. Their recommendation was to stay with my current aids, Oticon, which are good aids and they programmed them with REM and and gave me new domes which seal my ears better. No more squealing when I put my hands close to my ears. They also put an additional program on my aids and made it so I can use my iPhone to adjust my aids. And one more thing they told me was that my aids are maxed out, but there are more powerful aids available now if these aids are no longer strong enough. When I was getting ready to leave my appointment, I realized that after the REM adjustment, for the first time, I'd been able to understand both audiologists even though they were wearing masks. A really good day.

All because of you. I can't thank you enough for being there and giving helpful, candid responses. @sag

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@sag

Just reading the helpful banter and knowledgable responses has helped me so much. I struggle with depression because of the heating loss. My loss has been gradual, having started in my late twenties, I'm in my seventies now, but in about the last year it has gotten much worse. At my last hearing test, I was told that I'm not far from being profoundly impaired and told I might want to check with an ENT doctor. Thank heaven she told me that. I saw the ENT doctor and he sent me to a CI implant doctor. That made me think I need to learn more and there must be a lot of information on the internet that I haven't seen. I started spending time looking for and reading about hearing loss. I found and joined HLAA and found you. I'm not alone anymore.

From you I learned I should get a telecoil if I get a new aid, researched my aids and found out I don't have one. I also found out from you about Real Ear Measurement. I have gone to the same audiologist for over ten years and have never been told about an REM or about a telecoil. I have purchased two hearing aids two separate times from him. From reviews I thought this was a good audiologist and that I was getting the best treatment I could get.

This week I was tested for a CI and found out I don't quality. I was told 40 is the cutoff and my left ear measured 41. My right ear is in the 50's. Their recommendation was to stay with my current aids, Oticon, which are good aids and they programmed them with REM and and gave me new domes which seal my ears better. No more squealing when I put my hands close to my ears. They also put an additional program on my aids and made it so I can use my iPhone to adjust my aids. And one more thing they told me was that my aids are maxed out, but there are more powerful aids available now if these aids are no longer strong enough. When I was getting ready to leave my appointment, I realized that after the REM adjustment, for the first time, I'd been able to understand both audiologists even though they were wearing masks. A really good day.

All because of you. I can't thank you enough for being there and giving helpful, candid responses. @sag

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Good to hear a success story. (our success is measured differently). I had the same experience with REM. I got new (stronger) receivers in my hearing aids and the audiologist did not adjust them with REM until I asked him to. It made a huge difference. When I walked out of the audiologist's office I heard the "beepers" for pedestrians at traffic lights for the first time ever.

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@sag

Just reading the helpful banter and knowledgable responses has helped me so much. I struggle with depression because of the heating loss. My loss has been gradual, having started in my late twenties, I'm in my seventies now, but in about the last year it has gotten much worse. At my last hearing test, I was told that I'm not far from being profoundly impaired and told I might want to check with an ENT doctor. Thank heaven she told me that. I saw the ENT doctor and he sent me to a CI implant doctor. That made me think I need to learn more and there must be a lot of information on the internet that I haven't seen. I started spending time looking for and reading about hearing loss. I found and joined HLAA and found you. I'm not alone anymore.

From you I learned I should get a telecoil if I get a new aid, researched my aids and found out I don't have one. I also found out from you about Real Ear Measurement. I have gone to the same audiologist for over ten years and have never been told about an REM or about a telecoil. I have purchased two hearing aids two separate times from him. From reviews I thought this was a good audiologist and that I was getting the best treatment I could get.

This week I was tested for a CI and found out I don't quality. I was told 40 is the cutoff and my left ear measured 41. My right ear is in the 50's. Their recommendation was to stay with my current aids, Oticon, which are good aids and they programmed them with REM and and gave me new domes which seal my ears better. No more squealing when I put my hands close to my ears. They also put an additional program on my aids and made it so I can use my iPhone to adjust my aids. And one more thing they told me was that my aids are maxed out, but there are more powerful aids available now if these aids are no longer strong enough. When I was getting ready to leave my appointment, I realized that after the REM adjustment, for the first time, I'd been able to understand both audiologists even though they were wearing masks. A really good day.

All because of you. I can't thank you enough for being there and giving helpful, candid responses. @sag

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@sag, you mentioned that you are using domes for your hearing aids. You also say that these are "maxed out". I have to assume that they are maxed before squealing happens (feedback). For more profound losses, you may want to ask about custom molds. The volume should be able to be increased if you have an even better seal than what the domes are providing.
Tony in Michigan

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@sag

Just reading the helpful banter and knowledgable responses has helped me so much. I struggle with depression because of the heating loss. My loss has been gradual, having started in my late twenties, I'm in my seventies now, but in about the last year it has gotten much worse. At my last hearing test, I was told that I'm not far from being profoundly impaired and told I might want to check with an ENT doctor. Thank heaven she told me that. I saw the ENT doctor and he sent me to a CI implant doctor. That made me think I need to learn more and there must be a lot of information on the internet that I haven't seen. I started spending time looking for and reading about hearing loss. I found and joined HLAA and found you. I'm not alone anymore.

From you I learned I should get a telecoil if I get a new aid, researched my aids and found out I don't have one. I also found out from you about Real Ear Measurement. I have gone to the same audiologist for over ten years and have never been told about an REM or about a telecoil. I have purchased two hearing aids two separate times from him. From reviews I thought this was a good audiologist and that I was getting the best treatment I could get.

This week I was tested for a CI and found out I don't quality. I was told 40 is the cutoff and my left ear measured 41. My right ear is in the 50's. Their recommendation was to stay with my current aids, Oticon, which are good aids and they programmed them with REM and and gave me new domes which seal my ears better. No more squealing when I put my hands close to my ears. They also put an additional program on my aids and made it so I can use my iPhone to adjust my aids. And one more thing they told me was that my aids are maxed out, but there are more powerful aids available now if these aids are no longer strong enough. When I was getting ready to leave my appointment, I realized that after the REM adjustment, for the first time, I'd been able to understand both audiologists even though they were wearing masks. A really good day.

All because of you. I can't thank you enough for being there and giving helpful, candid responses. @sag

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Thank you for sharing with us @sag. Just learning you're not alone has made a different in the lives of many hard of hearing people. Those who are deaf, as in culturally Deaf, tend to socialize together and work in jobs where there are other Deaf people. They don't feel the isolation we feel, and are content to be deaf. My story is similar to yours. Diagnosed in my 20s, now in my 70s. Learning about HLAA when I was in my 40s probably saved my life…or at least the life I wanted to live. Stay tuned to new information. You are very close to being a CI candidate. I know others who were told they were not candidates, but learned they were less than a year later.

Oticon hearing aids are good quality, but not having telecoils is a shame. There is assisstive technology that can be used to remedy that, but it means having another device. If there are hearing loops installed in your area it would be worth learning more.

I wish we knew where people on 'Connect' lived so we could let them know if there are support groups in their area. Keep us posted on your hearing loss adventure and keep learning. It really matters!

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