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.

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

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

Jump to this post

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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@julieo4

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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@julieo4 "I wish we knew where people on 'Connect' lived ". Now that I have squawked about this without directly connecting it to the important reason you mention here, I'll say that when I joined this list and saw that almost no one said where they were located I thought that perhaps this "wall of silence" about location was something that was "officially expected". Couldn't something be said to invite that information while making it clear it was in no way required?

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@barbb

@julieo4 "I wish we knew where people on 'Connect' lived ". Now that I have squawked about this without directly connecting it to the important reason you mention here, I'll say that when I joined this list and saw that almost no one said where they were located I thought that perhaps this "wall of silence" about location was something that was "officially expected". Couldn't something be said to invite that information while making it clear it was in no way required?

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Is there a reason why our personal pages don't have information that is optional to include? I understand why some people don't care to share where they live, but I don't think it's inappropriate to say. I live in Appleton Wisconsin and also in Crosslake Minnesota. Never know when I'm going to be where. 🙂

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@julieo4

Is there a reason why our personal pages don't have information that is optional to include? I understand why some people don't care to share where they live, but I don't think it's inappropriate to say. I live in Appleton Wisconsin and also in Crosslake Minnesota. Never know when I'm going to be where. 🙂

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Hi Julie, I'm in Toronto, Canada. I'm jealous of your HLAA, our association is far less effective! Do say hi if you're up my way 🙂 Cheers. Lucy

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I may just do that! I've always wanted to come to Toronto and also to Quebec. I've met several people from CHAA over the years. When I was on the national board of HLAA (years ago), the president of the Canadian organization attended the national HLAA convention every year, as did a few more people. Was it CHAA or CHA. I don't remember for sure. Yes, we are lucky to have HLAA. Do you know you can join HLAA and participate in many online events? I think there is a chapter in Australia, or was at one time. No boundaries. Those webinars and Zoom meetings are open, so is membership. Check them out at http://www.hearingloss.org

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Joyce (joyces), Roads End, Oregon (central coast, surrounded by the small town of Lincoln City). I'm 2 hours away from any of the Oregon chapters. Most likely to go to Portland, but I already drive to the metro area mid-week and am not keen on adding a second trip on some Saturdays. <g> Actually, I'm an hour away even from a modest-sized city (Salem, state capitol). Of course, in Oregon except for the Portland metro area, there really aren't many cities. BTW, our community got its name because the one-lane gravel road in front of our place was originally the Salmon River Indian trail from the Willamette Valley to the central coast. In 1837, four honeymooning missionaries came here, on horseback, to celebrate their double wedding Salem. Until the 1930s, there were almost no roads to the Oregon coast. Today, US Hwy 101, which runs from WA to CA along the coast, is mostly two-lane and very curvy with 35 mph corners. It takes over an hour to drive to Tillamook which is about 50 miles north, and 45 minutes to drive to Newport, which is 30 miles south–and neither of them is what you'd think of as a city.

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@julieo4

Is there a reason why our personal pages don't have information that is optional to include? I understand why some people don't care to share where they live, but I don't think it's inappropriate to say. I live in Appleton Wisconsin and also in Crosslake Minnesota. Never know when I'm going to be where. 🙂

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Hmmm, Crosslake MN, I was around there this weekend and I didn't see you. I was in Baxter, Pilager, and Walker.

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