How does hearing loss change you?

Posted by joangela @joangela, Sat, May 11 7:59am

For me, hearing loss has always been a part of my life. Those darn hearing tests in elementary school always put me in the category of hearing loss. Now, that I am much older, in my late 50s my hearing loss is profound. It is so bad, even my hearing family, has a real hard time adjusting to it.
How it has really changed me?
I was a small business owner, and a top notch sales person. I was a huge people person and an excellent communicator. It’s all gone.
A major change in my life.
How about you?

@scottk

Interesting that you mentioned the 71/2 months it has gotten worse. I feel very similar. It was like I woke up one morning and it didn't matter if I had my fingers in my ears….I could not hear! At first I thought it was my hearing aids but after numerous trips/adjustments back and forth from the audi and ENT's I realize that my hearing is going rapidly. Add the tinnitus in and really is tough! I know mine is a genetic issue….I have 5 siblings and they have varying degrees of hearing loss. My aunts and uncles from my mom's side were all near deaf before they passed on. The one thing I do not want to withdraw from conversation like you mention….too many good things going on that I want to hear! I have 11 grandkids and I just make the point that they need to talk slower and directly to Grandpa! They are funny…..my one granddaughter who is 6 thinks that if she whispers in my ear that will help! Hearing loss is tough but just look around you and you will see people with bigger problems. Hang in there and be a good advocate for the cause! Take care.

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@scottk It’s very interesting that you have an obvious genetic hearing loss that runs in your family. The HLAA2019 convention had several seminars about genetic testing. They are mapping genes that cause hearing loss and have found 160. If you and your family decided to have yourselves tested for research you would need to find a specific lab that is performing those. You would not just use one that is just mapping your heritage. There’s info at the end of this link to direct you to finding out more about the testing.
https://www.cdc.gov/ncbddd/hearingloss/freematerials/ParentsGuide508.pdf

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Thanks! Will follow up on this!

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I can't watch TV without captions, which is OK because the only time the TV is on is when a Netflix disk comes in the mail.

I don't go to theater anymore because I have trouble with speech.

I find myself dominating conversation so I don't have to work to understand others, and when I realize this, I check myself.

I avoid some situations where there are a lot of people, especially in a noisy environment.

I still work, I'm a musician and I still sing and play music, pitches are OK, it's just those darn consonants that trip me up.

I do the best I can, and am patiently waiting for a cure.

Bob

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@ethanmcconkey

Hi @joangela that must be so frustrating. Thank you for sharing your story and how hearing loss changed you.

I wanted to tag fellow Connect members @cynaburst @squaredancer @contentandwell and @cobweb as they may want to take part in this discussion.

Back to you @joangela, you mentioned that it largely affected your life in the work force. How has it affected your life with family and friends?

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My Hearing Loss made me want to help others so they did not have to learn everything the hard way like I did. I understand the challenges of doing this with little to no support. I have a lifetime of progressive bilateral hearing loss challenges, and have experienced just about every challenging listening environment in my career. I just got my 1st AB CI implant June 12, after 42+ years of bi-lateral hearing aids.

During my career I helped my friends and co-workers learn how to self advocate and what hearing technology can do to improve our hearing lifestyles. There is so much to be done to educate the public on Hearing Health & Technology, provide feedback to Hearing Technology Development Companies on improvement opportunities, and help educate Hearing Care Professionals on being more patient/family centric. Our Hearing Care Professionals have a lot opportunities to go well beyond selling hearing aids that will help maximize their patients hearing lifestyle. Off my soapbox for now!

In early 2014, after retiring, I repurposed myself to become a Hearing Well Advocate and began giving community presentations on Hearing Health and Technology. In 2015 I helped start the 1st Upstate SC Hearing Support Group, in 2015/2016 I was a guest speaker at conferences for Hearing Care Professionals to share opportunities they have to improve their service and support. in 2017, I became an HLAA Hearing Assistive Technology Trainer and am part of the Network of Consumer Hearing Assistive Technology Trainers (N-CHATT). I am now participating in starting an HLAA Chapter in our area. I have learned a lot about cochlear implants in the past 3 years. I am now learning about CI & assistive technology programming and how to optimize my hearing in different listening environments so I can also share my experiences and provide support as I continue on my Hearing Journey. I have been to one HLAA convention and plan to go again next year. This is a great way to gain knowledge, meet new friends and network.

The reason I am sharing this information is that we all have experiences and knowledge that we should share and there are many opportunities to do that. This forum is one of those opportunities but there are many others. It's also a very rewarding experience to help others and see their smiles when they can hear better. Anyone with hearing loss can help others as we all have valuable experience and knowledge. This forum is also a great place to ask questions too. I am learning a lot and hope everyone else is as well.

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@bobbyboomer

I can't watch TV without captions, which is OK because the only time the TV is on is when a Netflix disk comes in the mail.

I don't go to theater anymore because I have trouble with speech.

I find myself dominating conversation so I don't have to work to understand others, and when I realize this, I check myself.

I avoid some situations where there are a lot of people, especially in a noisy environment.

I still work, I'm a musician and I still sing and play music, pitches are OK, it's just those darn consonants that trip me up.

I do the best I can, and am patiently waiting for a cure.

Bob

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@bobbyboomer My daughter and her husband, and my son and his fiancee were visiting this weekend, which always makes me happy but it now has become a difficult, sometimes depressing time because I miss so much of what is being said in a group. It really is hard to not be able to distinguish when multiple are speaking, everything ends up sounding like gibberish. Constantly asking people to repeat what they said is annoying to me, and I am sure to the other person also.
We also did some entertaining while they were visiting which of course made it even worse for me. I have always enjoyed entertaining and having guests but when I do now, I often end up a bit depressed.
I am hoping for some giant advances in hearing aids that will help with this. At my age though by the time that happens I will probably be long gone.
JK

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@contentandwell

@bobbyboomer My daughter and her husband, and my son and his fiancee were visiting this weekend, which always makes me happy but it now has become a difficult, sometimes depressing time because I miss so much of what is being said in a group. It really is hard to not be able to distinguish when multiple are speaking, everything ends up sounding like gibberish. Constantly asking people to repeat what they said is annoying to me, and I am sure to the other person also.
We also did some entertaining while they were visiting which of course made it even worse for me. I have always enjoyed entertaining and having guests but when I do now, I often end up a bit depressed.
I am hoping for some giant advances in hearing aids that will help with this. At my age though by the time that happens I will probably be long gone.
JK

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Hi Jk. Group settings are hard I use my tcoil In my heating aid even there is no loop setting . It helps a little bit. There are devices that you have a mike to a mini box type thing like pocket talker. Having folks in a circle settting helps. There a new thing I am made aware of by my friend a designer writer.. way you set up your home and what type of furniture you have makes a difference in sound. Softer furniture is. Wetter than having wood type .

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Joangela ………Like you I was a very social person. Not so much now and I miss it a lot. It just so frustrating to miss so much of the conversation. What I do hear takes me a minute to figure out and when I start to respond the group is on to another topic. Today I am going with some friends to lunch and then a movie. Although I have been wanting to see if I can still enjoy a movie I am also kind of dreading trying to keep up with the conversation in the car and at lunch. I'm also afraid if I don't go to things gradually I will no longer be asked.

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@judyca7

Joangela ………Like you I was a very social person. Not so much now and I miss it a lot. It just so frustrating to miss so much of the conversation. What I do hear takes me a minute to figure out and when I start to respond the group is on to another topic. Today I am going with some friends to lunch and then a movie. Although I have been wanting to see if I can still enjoy a movie I am also kind of dreading trying to keep up with the conversation in the car and at lunch. I'm also afraid if I don't go to things gradually I will no longer be asked.

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It makes me glad that my Dad, who can't hear very well, will let me know when he can't hear me. He feels comfortable doing this at home around family. Then my brother or Mom will repeat what I say because he can understand them better. I often use hand motions to help him understand. For some reason, some voices he can hear better than others.
Christine

Liked by bookysue

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Joangela: I recommend you call the movie theater in advance to see if they have closed caption devices. I use these all the time and I now enjoy movies again. Regal Theaters has gone beyond the minimum requirements and some of their theaters have closed caption google glasses. I tried these and they worked but they were too heavy on my nose. I prefer the ones that you can put in the cup holder with a flexible arm so you can position it to see the closed captions below the screen.

Liked by bookysue

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@bookysue

Hi Jk. Group settings are hard I use my tcoil In my heating aid even there is no loop setting . It helps a little bit. There are devices that you have a mike to a mini box type thing like pocket talker. Having folks in a circle settting helps. There a new thing I am made aware of by my friend a designer writer.. way you set up your home and what type of furniture you have makes a difference in sound. Softer furniture is. Wetter than having wood type .

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@bookysue I have Oticons and I do have their "Connect Clip" that one person can wear but when you are in a group, who do you give it too? I thought about my daughter because she probably has the highest voice and that frequency is the most difficult for me. Also, in our family room the furniture is soft and we have a rug over hardwood floors.
JK

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The change for me has been in my ability to understand what people say is social and work situations. When I ask friends, family members or colleagues to repeat what they said with a little more volume and enunciation, I get looks like I am stupid or that I am less intelligent than the speaker who can't speak up and enunciate. That is usually not true because I have a very high IQ (not bragging). I have found that more intelligent people tend to understand my infirmary and empathize with my hearing loss. And it's not like I haven't tried to accommodate those around me. I wear some of the most expensive hearing aids out there – Oticon Opn's. Unfortunately, hearing aids are mostly developed by people who have no hearing loss and the hearing aids don't live up to the hype.

Liked by capausz, bookysue

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I totally agree with you. I work in a grocery store and am a people person. When I cashier the difference is really hard to deal with. Even with hearing aides it is difficult to carry a conversation. So many times I don't hear them and find it embarrassing to get them to repeat what they say. What I hear is not always what they say. Life has definitely changed and is frustrating at times. Due to an Acoustic Neuroma tumor I have total hearing loss in my right ear. I am learning to deal with it and learning to be grateful for what I do have. The tumor was non cancerous and I'm still here for my children.

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I simply say, after anytime asking someone to repeat what they say… that "I have the best hearing aids on the market, but nothing replaces God-given hearing." For family, I have to keep reminding them that they need to know they have my attention before they speak to me. If in another room, they should call out, " (name)….. can you hear me?" first, before begining to talk to you. In same room, opening the fridge and starting to talk to me, while their face is toward inside of the fridge doesn't work at all well, as to my understanding what they're saying. At work, in casual situtations, such as a lunch break, can remark that if young people knew the down side of hearing loss, they'd take better care to lower the volume to their music. And, remind… that Medical studies have never found a link between IQ and hearing loss. And "Thank you God," remember, you are not to be considered "deaf". You have a hearing loss, or hard of hearing.

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@bobbyboomer

I can't watch TV without captions, which is OK because the only time the TV is on is when a Netflix disk comes in the mail.

I don't go to theater anymore because I have trouble with speech.

I find myself dominating conversation so I don't have to work to understand others, and when I realize this, I check myself.

I avoid some situations where there are a lot of people, especially in a noisy environment.

I still work, I'm a musician and I still sing and play music, pitches are OK, it's just those darn consonants that trip me up.

I do the best I can, and am patiently waiting for a cure.

Bob

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The ear phones have made listening to TV an absolute joy. I use the big soft pads that surround the ears. Plugs into TV, with charge stand by the T.V. As to music, I do not enjoy playing on my keyboard, nor listening to some music as much anymore… music in restaurants is annoying. A talker, I now talk less, go to restaurants where just one group at my table as my preference. I'll settle for hearing aids, for the terrible high price they cost to actually improve the quality of my hearing. My keyboard, if not wearing head phones, sounds super tinny. As to any cure, I'd forget that. But seems tech could vastly improve hearing reception by now.

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@contentandwell

@bookysue I have Oticons and I do have their "Connect Clip" that one person can wear but when you are in a group, who do you give it too? I thought about my daughter because she probably has the highest voice and that frequency is the most difficult for me. Also, in our family room the furniture is soft and we have a rug over hardwood floors.
JK

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Some folks have passed around the clip. I know it’s hard in group settings- and in a restaurant- ahh Do research on furniture set ul( sounds like yours is along the right path). It is interesting

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