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.

@babarker I agree that online communications, blogs and forums like this one offer a new opportunities for mentoring and teaching for people with hearing loss. It is my hope that members like you and other members who have gotten this group off the ground, like @tulip @dstell @genuinekim @linkeellis and others, will continue to share your experiences and mentor people who are new to the world of hearing loss.

@christinahaire, I like how you have dropped things you didn't particularly enjoy to focus on adaptive approaches (both for you and/or those around you) to continue doing the things you love. I'd also like to bring @airotto370 into this discussion. He's shared about compensating and adapting in his first post.

What's one thing that you know now that you wished you have known? Or put another way, what would you tell someone new to hearing loss?

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Hearing loss can be a life changing and event if it comes on quickly but not impossible to deal with or adapt to.

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@colleenyoung

@babarker I agree that online communications, blogs and forums like this one offer a new opportunities for mentoring and teaching for people with hearing loss. It is my hope that members like you and other members who have gotten this group off the ground, like @tulip @dstell @genuinekim @linkeellis and others, will continue to share your experiences and mentor people who are new to the world of hearing loss.

@christinahaire, I like how you have dropped things you didn't particularly enjoy to focus on adaptive approaches (both for you and/or those around you) to continue doing the things you love. I'd also like to bring @airotto370 into this discussion. He's shared about compensating and adapting in his first post.

What's one thing that you know now that you wished you have known? Or put another way, what would you tell someone new to hearing loss?

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I would tell someone new to hearing loss to try and nurture patience and self compassion, if either/both are in short supply. The hearing loss journey is a marathon, not a sprint. There will be a lot of trial and error in countless ways, to enhance your listening experience. I would also be up front with people, whether it be family, work associates, medical personnel, or friends, about your hearing loss. I suffered through acoustically challenging work situations for several years, trying to fake it, fooling no one but myself.

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@colleenyoung

@bille I appreciate the information you shared about hearing aids. You might wish to add your thoughts and experiences to this discussion:
> Hearing aids https://connect.mayoclinic.org/discussion/hearing-aids-1/

For those discussing Cochlear implants (CI), you might be interested in this information from:
- Mayo Clinic https://www.mayoclinic.org/tests-procedures/cochlear-implants/care-at-mayo-clinic/pcc-20385023
-Hearing Loss Association of America https://www.hearingloss.org/hearing-help/technology/cochlear-implantable-devices/

@babarker frustration due to hearing loss isn't uncommon. It must be particularly frustrating when loss of hearing has contributed to your making choices you might not otherwise have made, like declining teaching opportunities. Is teaching something you would otherwise like to do? Do your work colleagues know about the hearing loss?

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@colleenyoung CHC (Center for Hearing and Communications) in NYC is a non-profit organization with great services, that also reaches out to the community to help all hearing disabled people. I subscribe to their emails and get blog posts from them. Recently I got a new one written by one of the executives there -- http://chchearing.org/blog/joyous-hearing-challenge-wedding/
There is also one about frustrations in social situations, https://katherinebouton.com/2019/01/21/is-it-ok-if-i-leave-now/
The author of the second blog post has a book that is available on Amazon and Barnes and Noble, "Smart Hearing". I have not read it, I just became aware of it, but I think I will purchase it.

If anyone is in the NYC area, I would highly recommend them for hearing services. I have been to one of the audiologists there and she was wonderful. Being non-profit, if you purchase hearing aids from them, what you pay is determined by your income.
I became aware of CHC because my daughter was a grant writer and organizer for them. They also have an office in Florida but I'm not sure what part of Florida it is in.
JK

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I have been an active member of the Hearing Loss Association of America (HLAA) since I became profoundly deaf in 2008. I have served on both the HLAA national and NYC boards. I am currently working to educate and encourage medical staff and hospitals to provide the aids and services we need to communicate effectively with providers and to participate in our own health care. Also to urge those of us who are hoh/deaf to ask for the services we need.

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@toniann

I have been an active member of the Hearing Loss Association of America (HLAA) since I became profoundly deaf in 2008. I have served on both the HLAA national and NYC boards. I am currently working to educate and encourage medical staff and hospitals to provide the aids and services we need to communicate effectively with providers and to participate in our own health care. Also to urge those of us who are hoh/deaf to ask for the services we need.

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Welcome to Connect,Toni Iacolucci @toniann. I am a hearing person, and I live in a community where we have a very active deaf/hard of hearing population.
I have friends who are hoh/deaf, and friends who are interpreters. From what I have picked up through interactions, is that there is a real need for the work that you are doing to promote an education to the medical staff and hospitals about the need for effetive communication to the hoh/deaf patients and family members. Thank you for what you are doing.

I feel that many of the hearing population do not realize the importance of having an interpreter for public events. Where I live, there is usually a 'tag' to request interpreter, or "Interprter provided" message. However, that is not always true outside of this community.

A deaf gentleman at my church, taught me the the ASL (American Sign Language) sign for the word PEACE. As an organ transplant recipient, it helps me avoid handshake germs.

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@wassy2019

I would tell someone new to hearing loss to try and nurture patience and self compassion, if either/both are in short supply. The hearing loss journey is a marathon, not a sprint. There will be a lot of trial and error in countless ways, to enhance your listening experience. I would also be up front with people, whether it be family, work associates, medical personnel, or friends, about your hearing loss. I suffered through acoustically challenging work situations for several years, trying to fake it, fooling no one but myself.

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wassy2019 @wassy2019, Welcome to Connect.
My mother had a hearing loss in her left ear, she denied it most all of her life. I think that her denial was partly stubornness, and partly monetary concerns, and even the fear of a negative attitude towards people who could not hear when she was growing up.
Have you experienced any challenging attitudes directed towards you as a result of of sharing your own hearing loss?

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Yes, people (young people especially), often associate hearing impairment with not being intelligent. This is upsetting on many levels, especially in a work situation. As I speak up about my loss, I find it better to put it out upfront - I say to the person that I have hearing loss and need them to speak to me when facing me,... This generally works well and puts the burden of communication on the other. If they forget to face me, and I can't hear, I repeat my request, but at this point, the responsibility shifts so that I am not 100% responsible to hear everything regardless of the environment. Sometimes the other person is the one to feel "less than" for not communicating properly!

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@rosemarya

wassy2019 @wassy2019, Welcome to Connect.
My mother had a hearing loss in her left ear, she denied it most all of her life. I think that her denial was partly stubornness, and partly monetary concerns, and even the fear of a negative attitude towards people who could not hear when she was growing up.
Have you experienced any challenging attitudes directed towards you as a result of of sharing your own hearing loss?

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Everyone has been respectful.

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@salledell

Hi. This is Sylvia. I experienced hearing loss in my left ear in my 50’s. Shortly after, I developed Ménière’s disease and have very little hearing in that ear.
I wear hearing aids in both ears and am fine with face to face conversation, but have trouble distinguishing words in a large room like a gym or swimming pool. This makes it difficult to follow instructions in exercise classes. I’m thinking possibly cochlear implants might help. Does anyone have experience with a cochlear implant?

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I'm new here and use a cochlear implant and a hearing aid. To be eligible for a cochlear implant your hearing loss must be severe to profound. I'll be back when I can figure out how this forum works!

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