1. < Hearing Loss
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Hearing Loss: Come introduce yourself and connect with others

Posted by Colleen Young, Connect Director @colleenyoung, Feb 5, 2019

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.

gaiagardener | @gaiagardener | Jul 21, 2020

Thanks Jim & Julie for sharing your thoughts, support & ideas. You’ve reminded me I need to get back in touch with a couple of friends I met at a speechreading class a few years ago. It’s so nice to connect with people who really understand the challenges of hearing loss.

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ekobylak | @ekobylak | Jul 22, 2020

Hi! My name is Liz and I am new to this group. I have bilateral severe to profound hearing loss and wear a cochlear implant on my right side and a hearing aid on my left side. Started wearing hearing aids almost 40 years ago. Being actively involved with HLAA for decades has helped me to learn and grow. Life is good 🙂

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1 reply
Mentor
Julie, Volunteer Mentor | @julieo4 | Jul 22, 2020

Hi Liz! Good to see you in this group. No doubt about it, HLAA helps a ton. It helps to share our successes and frustrations with hearing loss online and in person. Yes, life is good! 🙂

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judyca7 | @judyca7 | Jul 22, 2020
In reply to @gaiagardener "Hi everyone.. I’m new here. I’m a 45 year old with bilateral profound hearing loss with..." + (show)
@gaiagardener

Hi everyone.. I’m new here. I’m a 45 year old with bilateral profound hearing loss with gradual onset over the past 30 years. My hearing loss is related to a genetic bone/connective tissue disorder called osteogenesis imperfecta. I currently use a bone anchored hearing aid (BAHA) on my right side. I no longer use a hearing aid on my left because the loss has progressed to the point that it no longer helps. I tried to learn ASL but it was challenging and I don’t know anyone who uses ASL anyway, so I gave up on that. I’m pretty isolated now because I can’t do any group social activities, even one-on-one conversations are becoming challenging. Fortunately I have an understanding partner who supports me and I’ve always been pretty introverted so I just spend a lot of time alone. I’m curious how others cope with the social isolation that comes with profound hearing loss..?

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Hi...... I struggle with the same issue of isolation. It has been gradual but as my hearing got worse I isolated myself more. It became just so difficult to struggle to hear.... also exhausting. Last month I could still hear on my phone but now I cannot. Or the tv or computer. My husband and I write notes to each other but he has arthritis in his hands and it is painful so he doesn't like writing. I try to avoid depression but some days........

Summer has helped. I spend as much time outside as I can. I have a small garden to tend, also try to walk three days a week. I write letters to friends and text and e-mail. All of these things are mood lifters and help.

My brother and sister both have osteogenesis imperfecta so I understand a little about your situation in that regard. Two of their children and one granddaughter also have OI. Childhood was rough for both my siblings but they have done well overall as they have gotten older. I think this is because they are less active. I wish you luck with your struggles. Hang in there. Judy

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2 replies
judyca7 | @judyca7 | Jul 22, 2020
In reply to @gaiagardener "Hi everyone.. I’m new here. I’m a 45 year old with bilateral profound hearing loss with..." + (show)
@gaiagardener

Hi everyone.. I’m new here. I’m a 45 year old with bilateral profound hearing loss with gradual onset over the past 30 years. My hearing loss is related to a genetic bone/connective tissue disorder called osteogenesis imperfecta. I currently use a bone anchored hearing aid (BAHA) on my right side. I no longer use a hearing aid on my left because the loss has progressed to the point that it no longer helps. I tried to learn ASL but it was challenging and I don’t know anyone who uses ASL anyway, so I gave up on that. I’m pretty isolated now because I can’t do any group social activities, even one-on-one conversations are becoming challenging. Fortunately I have an understanding partner who supports me and I’ve always been pretty introverted so I just spend a lot of time alone. I’m curious how others cope with the social isolation that comes with profound hearing loss..?

Jump to this post

forgot to say that I also say the Serenity prayer often and it helps a lot. Judy

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tonyinmi | @tonyinmi | Jul 22, 2020
In reply to @ekobylak "Hi! My name is Liz and I am new to this group. I have bilateral severe..." + (show)
@ekobylak

Hi! My name is Liz and I am new to this group. I have bilateral severe to profound hearing loss and wear a cochlear implant on my right side and a hearing aid on my left side. Started wearing hearing aids almost 40 years ago. Being actively involved with HLAA for decades has helped me to learn and grow. Life is good 🙂

Jump to this post

@ekobylak Welcome Liz. Words of wisdom. HLAA has a huge impact on the lives of many. I cannot imagine life without HLAA

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barbb | @barbb | Jul 22, 2020
In reply to @judyca7 "Hi...... I struggle with the same issue of isolation. It has been gradual but as my..." + (show)
@judyca7

Hi...... I struggle with the same issue of isolation. It has been gradual but as my hearing got worse I isolated myself more. It became just so difficult to struggle to hear.... also exhausting. Last month I could still hear on my phone but now I cannot. Or the tv or computer. My husband and I write notes to each other but he has arthritis in his hands and it is painful so he doesn't like writing. I try to avoid depression but some days........

Summer has helped. I spend as much time outside as I can. I have a small garden to tend, also try to walk three days a week. I write letters to friends and text and e-mail. All of these things are mood lifters and help.

My brother and sister both have osteogenesis imperfecta so I understand a little about your situation in that regard. Two of their children and one granddaughter also have OI. Childhood was rough for both my siblings but they have done well overall as they have gotten older. I think this is because they are less active. I wish you luck with your struggles. Hang in there. Judy

Jump to this post

Hi Judyca7, I am responding to your speaking of isolation and saying that you no longer can hear on the phone. Are you considering getting a Captel or Caption Call Phone? They are free and wonderful inventions. With my severe to profound loss of hearing I don't know where I'd be without the Captel phone.

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1 reply
barbb | @barbb | Jul 22, 2020
In reply to @gaiagardener "Hi everyone.. I’m new here. I’m a 45 year old with bilateral profound hearing loss with..." + (show)
@gaiagardener

Hi everyone.. I’m new here. I’m a 45 year old with bilateral profound hearing loss with gradual onset over the past 30 years. My hearing loss is related to a genetic bone/connective tissue disorder called osteogenesis imperfecta. I currently use a bone anchored hearing aid (BAHA) on my right side. I no longer use a hearing aid on my left because the loss has progressed to the point that it no longer helps. I tried to learn ASL but it was challenging and I don’t know anyone who uses ASL anyway, so I gave up on that. I’m pretty isolated now because I can’t do any group social activities, even one-on-one conversations are becoming challenging. Fortunately I have an understanding partner who supports me and I’ve always been pretty introverted so I just spend a lot of time alone. I’m curious how others cope with the social isolation that comes with profound hearing loss..?

Jump to this post

Hello Gaiagardener, I became deaf in 1 ear in the the late 90's and have severe to profound loss in the other. I have moved from using a hearing aid to a cochlear implant a few years ago. I am moved to write you because of your comment about being "pretty isolated and can't do any group social activities". I think that we with hearing loss are so lucky to have it during this age of technological revolution. Do you dismiss the opportunity to join all kinds of social / interesting groups through, HLAA for example, with the help of Zoom or whatever? Ironically, with the Pandemic, it is as though we can be on the same playing field as those with no loss. And of course there is the captioned phone.

REPLY
1 reply
Mentor
Julie, Volunteer Mentor | @julieo4 | Jul 22, 2020
In reply to @barbb "Hello Gaiagardener, I became deaf in 1 ear in the the late 90's and have severe..." + (show)
@barbb

Hello Gaiagardener, I became deaf in 1 ear in the the late 90's and have severe to profound loss in the other. I have moved from using a hearing aid to a cochlear implant a few years ago. I am moved to write you because of your comment about being "pretty isolated and can't do any group social activities". I think that we with hearing loss are so lucky to have it during this age of technological revolution. Do you dismiss the opportunity to join all kinds of social / interesting groups through, HLAA for example, with the help of Zoom or whatever? Ironically, with the Pandemic, it is as though we can be on the same playing field as those with no loss. And of course there is the captioned phone.

Jump to this post

Check the HLAA website for opportunities for webinars and video conferences. Those that have been held are recorded and posted. http://www.hearingloss.org I love the comment about us being on the same playing field as those w/o hearing loss on video conferences. I feel the same way, especially when they are captioned.

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1 reply
arrowshooter | @arrowshooter | Jul 22, 2020
In reply to @judyca7 "Hi...... I struggle with the same issue of isolation. It has been gradual but as my..." + (show)
@judyca7

Hi...... I struggle with the same issue of isolation. It has been gradual but as my hearing got worse I isolated myself more. It became just so difficult to struggle to hear.... also exhausting. Last month I could still hear on my phone but now I cannot. Or the tv or computer. My husband and I write notes to each other but he has arthritis in his hands and it is painful so he doesn't like writing. I try to avoid depression but some days........

Summer has helped. I spend as much time outside as I can. I have a small garden to tend, also try to walk three days a week. I write letters to friends and text and e-mail. All of these things are mood lifters and help.

My brother and sister both have osteogenesis imperfecta so I understand a little about your situation in that regard. Two of their children and one granddaughter also have OI. Childhood was rough for both my siblings but they have done well overall as they have gotten older. I think this is because they are less active. I wish you luck with your struggles. Hang in there. Judy

Jump to this post

InnoCaption displays text on my cell phone. It's free!

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