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Hearing Loss: Come introduce yourself and connect with others

Posted by @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?

REPLY

@christinahaire

Hello, my name is Christina. I began losing my hearing in my late 50’s. Now am 74. It got progressively worse and I believe it may have a hereditary component. My paternal grandparents were deaf, only one congenitally, and my father began losing his hearing in his 40s. And deaf by my age. I had about 10% hearing and have felt truly handicapped. Then decided to explore Cochlear Implant. I had the CI surgery 3 weeks ago in my right ear. Now “deafer” since only left eat with HA. But I will be connected to the CI next week. And can let you know my progress if interested.

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So the CI is the large thing on the back side of your head with a giant BTE. Are you self conscious of the look of it? What precautions are necessary. How do you wash your hair. Is dirt an issue? Are the sounds the same as acoustic natural sounds?

@dstell

@colleenyoung, thanks for the invitation to join. My hearing loss began at age 27 when I was diagnosed with Meniere's disease. I went deaf in my left ear within 3 years of diagnosis. I went deaf in my right ear at age 48, also from Meniere's. At that point I was implanted with a cochlear implant in my left ear, and my right ear was implanted 1 1/2 years later.

With this being tinnitus awareness week, I would like to add that, although I am deaf, I have not experienced silence in 27 years.

Feel free to ask me anything about Meniere's or cochlear implants. I'm pretty much an open book on those subjects.

Dennis

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@dstell I had no idea what Meniere's was so I just googled it. Does it always result eventually in a permanent hearing loss? Are CIs appropriate for all types of hearing loss? My daughter had a friend who had always been deaf and he got them. He basically had to learn to speak then.

@salledell Does your water instructor teach from in the pool or on the edge? I have one who teaches from in the pool but she has a deep and booming voice so I can hear her pretty well. I do wear my aids in the pool, my head never goes under. Another of the instructors teaches from the side and wears a little microphone called the "Connect Clip" so I can hear her. That is an accessory for the Oticon Opn hearing aids. Prior to her using it I had to really follow her movements and what others in the class was doing. She is young and has sort of a high voice. I could wear my prior hearing aids in the pool also. A brief submersion did not hurt them. They were Phonaks.

@gulzar I hate being in crowded, noisy places. It can be very depressing to just hear a din and not be able to distinguish much. Even when my family is gathered in our family room, I have trouble distinguishing sounds and hearing what is being said. Sometimes I just drop out.

@babarker I really understand your frustration. I hate continually asking people to repeat themselves. You are fortunate to have an understanding family.

JK

@babarker

So the CI is the large thing on the back side of your head with a giant BTE. Are you self conscious of the look of it? What precautions are necessary. How do you wash your hair. Is dirt an issue? Are the sounds the same as acoustic natural sounds?

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Yes, the CI is like a BTE HA, but bigger. It is bigger because there is a lot more computing power housed in those processors. I don't care if people see it and in many ways, it's easier if they do so they know you have hearing loss, but everyone is different with how they feel about showing off their CI's. The processor comes off and you shower and wash your hair like you normally do. At first the sounds are strange, robotic, but that gets better with time. Everything sounds like it did before I lost my hearing but at first, everyone sounded like Minnie Mouse. It was actually pretty funny to listen to.

@contentandwell

@dstell I had no idea what Meniere's was so I just googled it. Does it always result eventually in a permanent hearing loss? Are CIs appropriate for all types of hearing loss? My daughter had a friend who had always been deaf and he got them. He basically had to learn to speak then.

@salledell Does your water instructor teach from in the pool or on the edge? I have one who teaches from in the pool but she has a deep and booming voice so I can hear her pretty well. I do wear my aids in the pool, my head never goes under. Another of the instructors teaches from the side and wears a little microphone called the "Connect Clip" so I can hear her. That is an accessory for the Oticon Opn hearing aids. Prior to her using it I had to really follow her movements and what others in the class was doing. She is young and has sort of a high voice. I could wear my prior hearing aids in the pool also. A brief submersion did not hurt them. They were Phonaks.

@gulzar I hate being in crowded, noisy places. It can be very depressing to just hear a din and not be able to distinguish much. Even when my family is gathered in our family room, I have trouble distinguishing sounds and hearing what is being said. Sometimes I just drop out.

@babarker I really understand your frustration. I hate continually asking people to repeat themselves. You are fortunate to have an understanding family.

JK

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I have tried to help those with good hearing understand what I hear compared to them. The closest I can come is to have them cup the palms of their hands over their ears. This is what I hear with hearing aids. Pressing their index fingers into the ear canal is what I hear without hearing aids.

@babarker

So the CI is the large thing on the back side of your head with a giant BTE. Are you self conscious of the look of it? What precautions are necessary. How do you wash your hair. Is dirt an issue? Are the sounds the same as acoustic natural sounds?

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@babarker, I don't notice the CI coils anymore and have had some great teaching moments when others have said something. Since I never wore aids, getting used to the processor on my ear was different.

As for the sound, it has become like I remember hearing. Many speak of it being their new normal. Brain plasticity is an amazing thing.

@contentandwell, when I went deaf, I was convinced that I could not be helped. I was shocked when my Dr suggested cochlear implants.

Cochlear implants are suitable for people with sensory-nueral hearing loss. This is when the hairs inside the cochlea are damaged. A CI will not be the best option for conductive hearing loss, which is when sounds can't get to the cochlea. It also will not be the option if the hearing nerve going from the cochlea to your brain is damaged.

@contentandwell

@dstell I had no idea what Meniere's was so I just googled it. Does it always result eventually in a permanent hearing loss? Are CIs appropriate for all types of hearing loss? My daughter had a friend who had always been deaf and he got them. He basically had to learn to speak then.

@salledell Does your water instructor teach from in the pool or on the edge? I have one who teaches from in the pool but she has a deep and booming voice so I can hear her pretty well. I do wear my aids in the pool, my head never goes under. Another of the instructors teaches from the side and wears a little microphone called the "Connect Clip" so I can hear her. That is an accessory for the Oticon Opn hearing aids. Prior to her using it I had to really follow her movements and what others in the class was doing. She is young and has sort of a high voice. I could wear my prior hearing aids in the pool also. A brief submersion did not hurt them. They were Phonaks.

@gulzar I hate being in crowded, noisy places. It can be very depressing to just hear a din and not be able to distinguish much. Even when my family is gathered in our family room, I have trouble distinguishing sounds and hearing what is being said. Sometimes I just drop out.

@babarker I really understand your frustration. I hate continually asking people to repeat themselves. You are fortunate to have an understanding family.

JK

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@contentandwell, Meniere's doesn't always cause complete deafness. I know of some that do well with hearing aids. I also know of many with CI.

@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

@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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Most of my peers know about my hearing loss but do not understand what it we experience. They have no clue and it is difficult to describe to someone who has not experienced it. Yes I would definitely do more teaching if it weren’t for my disabilities. Along with hearing loss I also have what is called essential tremor in my hands which makes it next to impossible to hold a piece of paper in my hands. For that I try to use a Potium to lay my notes on. I have been asked to teach at national conferences but always find some excuse to get out of it due to the embarrassment of my disabilities. My only outlet, which enables me to share my knowledge with others, is to write and converse with individuals through forums, blogs and emails such as this.

I am very sorry to hear how your hearing loss has limited your life. It is comletely understandable.I encourage you to find a way to do those things you like to do. Is there any possibility you could have an assistant or a friend at those venues you mention to help you interpret and understand etc? As for being embarrassed, try not to be! It’s like eye glasses, or a limp, or any number of things. Everyone has something! It is an opportunity to share and educate people on hearing loss I think. As my hearing loss continued to deteriorate and I was no longer able to think it would come back or maybe infection, haha, I simply continued with my Italian lessons and working as an Interior designer. This is not to say it isn’t hard or exhausting which is true for both. But I explained to everyone I needed to be spoken to face to face and I found people very understanding in Italian class and work, I dropped out of those things I didn’t enjoy as much which in a way was a relief. I find larger social groups much harder because even if people know, they initially “yell” at you and then forget and go on as normal. It is exhausting trying to hear and I appreciate that. Sometimes I do opt out or turn off my HA in loud restaurants. Usually one person, my husband, or someone will help me out repeating or explaining the important, like what the waiter is saying. Not ideal but unfortunately, the other alternative is not to participate and that is even less fun so we just keep going as best we can. And like you, I am a writer and have thanked my lucky stars that I have always been a voracious reader and not a TV watcher and can “hear perfectly” by email. As a PS today is 4 weeks since I had Cochlear Implant surgery and for these weeks even more deaf since only have 1 bad ear instead of 2. But my CI will be connected on Wednesday and I am excited and nervous. My best to you.

@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?

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

@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.

@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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