Hearing Loss: Come introduce yourself and connect with others

Posted by Colleen Young, Connect Director @colleenyoung, Tue, Feb 5 12:02pm

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?

@contentandwell

Hi, @joangela I would also like to welcome you to Connect. I have had a hearing loss since 2004 which has gotten progressively worse over the years. I wear hearing aids but the latest problem I have had is a loss of clarity, and hearing aids help less with that than they do with volume. I do have hearing aids that were considered to be the most sophisticated in helping with that when I purchased them a little over two years ago. They have improved them even more but with the cost of hearing aids, it would be impossible to update them with every improvement.
I believe my original loss was probably due to getting older, but the loss of clarity is probably due to some necessary drugs I have to take.
I agree with @IndianaScott and @sparklegram Social situations can be very difficult. I have a problem even in my own home when we have company. Often there is more than one person speaking so it just becomes garbled. I have on occasion just stopped trying and politely dropped out.
I try to go primarily to restaurants that I know are a bit quieter. Some restaurants have tall booths or plexiglass shields between the booths and that helps to baffle the noise a bit.
I've heard great things about HLAA that @katherinebouton mentioned but unfortunately, the closest one to me is over away and their meetings are at night. I wish we had a closer one.
JK

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Hi JK and Everyone! I'd like to say a few more words about HLAA. Yes, it's a terrific organization, and the peer support piece of HLAA can be life changing especially for people with adult onset hearing loss. Some chapters have parent's groups too. HLAA Chapters exist because people with hearing loss start them. They are not run by professionals. Some meet in the evenings, others meet in the afternoons. That decision comes from inside each chapter, based on what the nucleus of the chapter decides will work. If there is no HLAA chapter in your area, why not start one? It's not that difficult. When I started the chapter in my community, I went to the news media and asked them to write a story about HLAA, and why I wanted to start a local chapter. I arranged for meeting space at our local library, set a time, etc. Over 50 people showed up that night! Eleven of them agreed to work to develop a chapter. It was an incredibly rewarding experience. Those eleven people ranged in age from 35 to 85. We became friends. We learned a ton, and have been reaching out to others with hearing loss ever since. Yes, things change. Some of our original members have passed away, some have moved away, but new people continue to join us. I encourage everyone out there that isn't in an area where an HLAA chapter exists, to consider helping HLAA grow. It's up to you to make that happen! National HLAA staff has resources to help you. Call on them. You won't regret it.

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@julieo4

Hi JK and Everyone! I'd like to say a few more words about HLAA. Yes, it's a terrific organization, and the peer support piece of HLAA can be life changing especially for people with adult onset hearing loss. Some chapters have parent's groups too. HLAA Chapters exist because people with hearing loss start them. They are not run by professionals. Some meet in the evenings, others meet in the afternoons. That decision comes from inside each chapter, based on what the nucleus of the chapter decides will work. If there is no HLAA chapter in your area, why not start one? It's not that difficult. When I started the chapter in my community, I went to the news media and asked them to write a story about HLAA, and why I wanted to start a local chapter. I arranged for meeting space at our local library, set a time, etc. Over 50 people showed up that night! Eleven of them agreed to work to develop a chapter. It was an incredibly rewarding experience. Those eleven people ranged in age from 35 to 85. We became friends. We learned a ton, and have been reaching out to others with hearing loss ever since. Yes, things change. Some of our original members have passed away, some have moved away, but new people continue to join us. I encourage everyone out there that isn't in an area where an HLAA chapter exists, to consider helping HLAA grow. It's up to you to make that happen! National HLAA staff has resources to help you. Call on them. You won't regret it.

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@julieo4 My name is Mike Miles and I am an active HLAA member at the local and state level in PA. I am currently trying to start an HLAA Chapter in Berks County, PA. I am using the HLAA member list as well as the PA newsletter mailing list to try and attract interested members to help organize a chapter. Not having much luck so far. I like your idea of contacting the local media. Would you happen to have a copy of the article that was written which attracted so much interest? What chapter is it? Any information you learned along the way is welcome. Thanks.

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@mikepa

@julieo4 My name is Mike Miles and I am an active HLAA member at the local and state level in PA. I am currently trying to start an HLAA Chapter in Berks County, PA. I am using the HLAA member list as well as the PA newsletter mailing list to try and attract interested members to help organize a chapter. Not having much luck so far. I like your idea of contacting the local media. Would you happen to have a copy of the article that was written which attracted so much interest? What chapter is it? Any information you learned along the way is welcome. Thanks.

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Hi Mike. My HLAA chapter is in the Fox Valley area of Wisconsin. Fox Valley Regional Chapter meets in Appleton WI. The chapter is 35 years young, so that article is in the history books. There is no reason why you cannot do this today. It took quite a bit of courage for me to come out of my 'hearing loss closet' and go public with my invisible disability. Like many people, I had been hiding it for years. Not sure you'd get the same response I had back then because hearing loss is talked about more today than it was then. But why not try? Ask someone in the features department to write an article about what you want to do; share info about HLAA, etc. Share a story with a meeting announcement. Have a location and timeline available so that can be a piece of the story. I also went directly to people I saw who had hearing aids, and asked if they might be interested in helping me. I think that made a difference. We had no e-mail then, so personal communication was the only way to connect. HLAA was SHHH then, and was a very young organization. I really believe that if you can get 4-5 dedicated people, who want to learn how to live WELL with hearing loss, you can get something going and build on that. The 2019 HLAA National Convention is pretty close to your area. Create awareness of that event and encourage people to go. Good luck! Hey, just listening to the people on this list talking about how alone they often feel, says that people need to come together to talk and learn.

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@IndianaScott

Hi @contentandwell Sorry to hear of your health situation! I just got back from a week in Napa with our adult daughter and we did our best to improve the wine economy! 🙂

My wife's family has their roots in Italy, but sadly in one of the very few areas that can't grow grapes worth spit 🙂

I hope the sun is shining wherever you are today!

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@IndianaScott My husband's father came from Sicily, his mother had roots in Naples.

I do miss wine country a lot. I was actually getting a bit learned about wines so a friend gave me a little kitchen sign that said "Wine Diva".
JK

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@julieo4

Hi JK and Everyone! I'd like to say a few more words about HLAA. Yes, it's a terrific organization, and the peer support piece of HLAA can be life changing especially for people with adult onset hearing loss. Some chapters have parent's groups too. HLAA Chapters exist because people with hearing loss start them. They are not run by professionals. Some meet in the evenings, others meet in the afternoons. That decision comes from inside each chapter, based on what the nucleus of the chapter decides will work. If there is no HLAA chapter in your area, why not start one? It's not that difficult. When I started the chapter in my community, I went to the news media and asked them to write a story about HLAA, and why I wanted to start a local chapter. I arranged for meeting space at our local library, set a time, etc. Over 50 people showed up that night! Eleven of them agreed to work to develop a chapter. It was an incredibly rewarding experience. Those eleven people ranged in age from 35 to 85. We became friends. We learned a ton, and have been reaching out to others with hearing loss ever since. Yes, things change. Some of our original members have passed away, some have moved away, but new people continue to join us. I encourage everyone out there that isn't in an area where an HLAA chapter exists, to consider helping HLAA grow. It's up to you to make that happen! National HLAA staff has resources to help you. Call on them. You won't regret it.

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@julieo4 Hi Julie. I would love to see one in this area but I am really not an initiator or organizer, and at this point in my life, I don't think that's going to change. I may have been more able to do that when I was younger, probably best when I was in my 50s actually and had gained confidence with life experience, but not now, in my 70s.
I would be a great co-organizer though if someone else got it started.
JK

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@sparklegram

@IndianaScott , @joangela – Good morning, and welcome Joangela . Yes! Noisy rooms, restaurants, and people with a certain way of speaking. It's as though they inhale their words! My husband is a home brewer and believe me, tap rooms and brew pubs are the worst!

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Hello Sparklegram. Thanks for the welcome. What is your situation?
JoAngela

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@joangela

Hello Sparklegram. Thanks for the welcome. What is your situation?
JoAngela

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@joangela – Let's see… my situation is that I'm 74. I've worn hearing aides since 1991 for a pretty normal hearing loss. I currently need new ones. I think it is abominable that there is no or very little coverage for seniors for hearing aids, glasses, and dental work!! I think my hearing has worsened since I got my last pair of hearing aids. I have Phonak, and they've been good, but I want to have an in-depth interview with my audiologist before I get a new pair. I have an excellent company here that works hard to find just the right hearing device for your particular hearing loss. My grandmother and mother both had hearing loss. My grandmother wore hearing aides but my mother refused! I've told my husband that i would pull my hearing aides behind me in a wheelbarrow if I had to! i can't stand not being able to hear.

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@sparklegram

@joangela – Let's see… my situation is that I'm 74. I've worn hearing aides since 1991 for a pretty normal hearing loss. I currently need new ones. I think it is abominable that there is no or very little coverage for seniors for hearing aids, glasses, and dental work!! I think my hearing has worsened since I got my last pair of hearing aids. I have Phonak, and they've been good, but I want to have an in-depth interview with my audiologist before I get a new pair. I have an excellent company here that works hard to find just the right hearing device for your particular hearing loss. My grandmother and mother both had hearing loss. My grandmother wore hearing aides but my mother refused! I've told my husband that i would pull my hearing aides behind me in a wheelbarrow if I had to! i can't stand not being able to hear.

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@sparklegram My last pair of hearing aids was Phonaks and I loved them for their directionality. I could be in a noisy restaurant with hearing friends, and with that option on I could hear the person I was speaking to better than they could hear me! Unfortunately, my clarity declined so I now have Oticon OPN1` hearing aids. At the time I purchased them, about 2.5 years ago, they were the most innovative for clarity and they did help significantly with that. Now they have the OPNs which is supposed to be a 15% improvement.
JK

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@contentandwell

@julieo4 Hi Julie. I would love to see one in this area but I am really not an initiator or organizer, and at this point in my life, I don't think that's going to change. I may have been more able to do that when I was younger, probably best when I was in my 50s actually and had gained confidence with life experience, but not now, in my 70s.
I would be a great co-organizer though if someone else got it started.
JK

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Sometimes just starting a conversation with someone else who has hearing loss/hearing aids, can lead to 'getting together to talk about it'. Who knows, that could evolve into a chapter. HLAA has chapter coordinators in some states, but not all. If there is a state association in your state, that may be your starting point. Who knows….there could be other people asking the same question. I'm your age, and I'm still actively involved. 🙂 So many people need to talk. A YMCA or worship center may be a great place to start.

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@mkc4ever

Hi my name is Marty, I Have been dealing with hearing loss and tinnitus for quite some time, I wear hearing aids in both ears. I retired from the USCG after a 26 year career, my rating was Machinery Technician(mechanic) and I was around heavy machinery for most of my life and career my hearing loss is occupational hazard related. The VA furnishes me with hearing aids and treatment. I get a yearly hearing test and my most recent shows that my left ear is getting worse so I will soon get an appointment with a ENT. I am a bit nervous and worried about the outcome, but we will wait and see what the diagnosis is.

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Hey Marty @mkc4ever, welcome to Connect.
You may appreciate this discussion as you prepare for your upcoming appointment with the ENT specialist:
– Your Tips on How to Get Off to the Best Start with a New Specialist https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/

When is your appointment? What makes you apprehensive about it?

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Hi everyone! My name is Shari and I have a genetic adult-onset moderate hearing loss in both ears. I write a weekly blog about my ups and down living with hearing loss and share tips for living your best life despite the challenges of hearing loss. Please check it out if you are interested. http://www.livingwithhearingloss.com. I am also on the board of HLAA and a member of the NYC chapter. Thanks to Mayo/Ida/HLAA for providing this forum.

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@sharieberts

Hi everyone! My name is Shari and I have a genetic adult-onset moderate hearing loss in both ears. I write a weekly blog about my ups and down living with hearing loss and share tips for living your best life despite the challenges of hearing loss. Please check it out if you are interested. http://www.livingwithhearingloss.com. I am also on the board of HLAA and a member of the NYC chapter. Thanks to Mayo/Ida/HLAA for providing this forum.

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Welcome Shari! I have been following your blog for some time. I enjoy your insight.

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@contentandwell

Hi, @jfobes and welcome to Connect.
Your problem really is a curious one. The ringing in your ears, I presume is tinnitus, a fairly common problem. The fact that your hearing clears up and has clarity is pretty odd though. Is it possible that you have mild TMJ as @parus mentioned? I would rule out a sinus infection since it's been for so long. I suspect you have done some serious googling about this and not come up with anything.
Is there a large medical center, preferably a teaching center, anywhere close to you? I would think they would be most apt to be able to figure this out if anyone can. I am sure it is beyond the ken of most regular audiologists. I live in southern NH so there is Mass Eye and Ear about 55 miles down the road but there are many all over. I just googled this myself and there is a list at the US News website:
https://health.usnews.com/best-hospitals/rankings/ear-nose-and-throat

Hopefully one of those is close enough to you so you will be able to have a consultation there.

I am very curious about what they have to say if you do go somewhere one of these so I hope you get back to us.
JK

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JK I had a miserable experience with a new to me ENT. After spending the $575 to the have the mandatory hearing test to gain access to the ENT. His highly educated diagnoses "you have bad ears, some people are born with bad knees you got bad ears" He did not listen to any of my concerns nor address any of my questions. I have filed a complaint with provider and am waiting to hear back from them. Oh and indecently about 10 days before my appointment I pretty much lost my left ear! I can only hear treble no bass or low tones at all!!! He had no idea why that would be, and of course my ears looked "perfect" and according to the testing my e tubes are working perfectly normal. I asked why do my ear feel plugged and voices sound muffled? "you got bad ears"

This is so frustrating! I'm left handed thus use my left ear for the phone. I can't hear anyone in that ear and switching is proving to be quite challenging to say the least!!!!!!

I may follow up with the University of Wisconsin medical school for advice. I am waiting to hear back from the friend of a friend that is currently in school to become an audiologist. Hope he can mention my condition to an educator and if nothing else raise an eyebrow?

FYI – the chewing gum made my jaw sore from chewing, did nothing for my ears!

Liked by lioness, capausz

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@jfobes

JK I had a miserable experience with a new to me ENT. After spending the $575 to the have the mandatory hearing test to gain access to the ENT. His highly educated diagnoses "you have bad ears, some people are born with bad knees you got bad ears" He did not listen to any of my concerns nor address any of my questions. I have filed a complaint with provider and am waiting to hear back from them. Oh and indecently about 10 days before my appointment I pretty much lost my left ear! I can only hear treble no bass or low tones at all!!! He had no idea why that would be, and of course my ears looked "perfect" and according to the testing my e tubes are working perfectly normal. I asked why do my ear feel plugged and voices sound muffled? "you got bad ears"

This is so frustrating! I'm left handed thus use my left ear for the phone. I can't hear anyone in that ear and switching is proving to be quite challenging to say the least!!!!!!

I may follow up with the University of Wisconsin medical school for advice. I am waiting to hear back from the friend of a friend that is currently in school to become an audiologist. Hope he can mention my condition to an educator and if nothing else raise an eyebrow?

FYI – the chewing gum made my jaw sore from chewing, did nothing for my ears!

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@jfobes, your ENT’s response and behavior was outrageous, unprofessional, and so disappointing. I commend you for challenging his fee with your insurance company. Too often, doctors are permitted to get away with unsatisfactory work.

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@jfobes

JK I had a miserable experience with a new to me ENT. After spending the $575 to the have the mandatory hearing test to gain access to the ENT. His highly educated diagnoses "you have bad ears, some people are born with bad knees you got bad ears" He did not listen to any of my concerns nor address any of my questions. I have filed a complaint with provider and am waiting to hear back from them. Oh and indecently about 10 days before my appointment I pretty much lost my left ear! I can only hear treble no bass or low tones at all!!! He had no idea why that would be, and of course my ears looked "perfect" and according to the testing my e tubes are working perfectly normal. I asked why do my ear feel plugged and voices sound muffled? "you got bad ears"

This is so frustrating! I'm left handed thus use my left ear for the phone. I can't hear anyone in that ear and switching is proving to be quite challenging to say the least!!!!!!

I may follow up with the University of Wisconsin medical school for advice. I am waiting to hear back from the friend of a friend that is currently in school to become an audiologist. Hope he can mention my condition to an educator and if nothing else raise an eyebrow?

FYI – the chewing gum made my jaw sore from chewing, did nothing for my ears!

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@jfobes I am so sorry for what you have gone through, how frustrated you must be. I agree with @capausz, that is outrageous.
I presume you must live in the Wisconsin area. If you were close to NYC I would recommend an excellent audiologist there who is fairly renown I believe. I hope you do find someone who can give you the help you need and deserve. Some medical professionals are hopeless unfortunately and it sounds as if that audiologist is one of them.

The rating site healthgrades.com does have audiologists on it, you might check there. I never have any faith in them unless there are quite a few reviews though. I just checked my own audiologist and she has one, five stars, but if I was looking for someone I would probably try to find someone with many more than one review.

I hope that you are able to get some help from the person who is in school to become an audiologist. I definitely would, as I said before though, go to a major medical center. Most have audiology departments I believe.
JK

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