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?

Hello Eileen123, I am very happy with my cochlear implant. I use a hearing aid in my left ear, and have the implant on my right. The two technologies work well together after the brain gets adjusted to hearing that way. I had my CI surgery done in 2005 and have never regretted it. Feel free to e-mail me personally if you have questions. Julie Olson

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Welcome new members to the Hearing Loss group.

@deanodesigner and @djwenz, you may be interested in following the Brain Tumor group (https://connect.mayoclinic.org/group/brain-tumor-support-group/), in particular these discussions:
– Anyone else diagnosed with acoustic neuroma, a benign brain tumor? https://connect.mayoclinic.org/discussion/my-name-is-tracy-daley-i-live-in-omaha-nebraska-my-diagnosis/
– SRS (Stereotactic Radiosurgery) for a benign schwannoma? https://connect.mayoclinic.org/discussion/srs-stereotactic-radiosurgery/
– Experience with acoustic neuroma? https://connect.mayoclinic.org/discussion/acoustic-neuroma-1/

@barbb and others, I think you and others would be interested in these informative discussions on balance, proprioception and the relationship to hearing loss.
– What exactly is proprioception? Anyone with experiences? https://connect.mayoclinic.org/discussion/propriociption/
– Balance issues and hearing loss https://connect.mayoclinic.org/discussion/balance-issues-and-hearing-loss/

@eileen123, you may also be interested in these discussions about cochlear implants
– Cochlear Implants https://connect.mayoclinic.org/discussion/cochlear-implants-2e44a5/
– Cochlear implant for single sided deafness https://connect.mayoclinic.org/discussion/chochlear-implant-for-single-sided-deafness/
– My Cochlear Implant – a journal https://connect.mayoclinic.org/discussion/my-cochlear-implant-a-journal/
– Cochlear Implant expenses: How much does it cost? https://connect.mayoclinic.org/discussion/implant-expenses/

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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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@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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Welcome to the forum.

I started learning ASL also. I had 2 reasons. First to improve my ability to communicate and Second to exercise my aging brain. I think I was successful on both. It is frustrating that so many folks do not use or understand ASL. But in the process of learning ASL I met some deaf friends who taught many ways of dealing with the inability to hear/understand. Those communities of people are hard to find. Be patient and keep trying. I live in a pretty rural area so it was especially difficult for me. There are more opportunities in large cities.

COVID doesn't help either. There is always the internet but I have avoided social media because there are some risks associated with that. Besides, I don't believe anyone cares how many Cheerios I had for breakfast and other such trivia. My hobbies are individual sports and activities. All that adds up to the isolation you face. I know it would be good for me to play cards or golf with others, but that doesn't interest me much and hearing loss makes it worse.

Family are my main social connections. Since COVID my church family has become remote. I find that physical exercise and activities help my attitude too. The endorphins that are produced are known to help. Music helps well. I can listen to music with my custom moulded earphones. They exclude all outside noise and I just hear the music. Of course I don't hear ALL the music but I'm accustomed to that.

Hand in there and stay in touch.

Jim

Liked by gaiagardener

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@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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Welcome to this group. My experience is similar to yours, with gradual sensorineural hearing loss that started when I was a young adult. Thankfully, I had acquired language; speaking, reading, writing skills, etc. by that time. Today I am clinically/medically deaf in both ears, but a cochlear implant has kept me in the hearing mainstream. Amazingly, the CI works very well with the hearing aid I still use in the other ear. The human brain has a way of adapting when it has a chance.

At one time I considered learning ASL, but soon realized that I would not have anyone to talk to, and that my friends, co-workers, and family members were not going to learn a new language to accommodate me. I discovered many wonderful technologies that went beyond my hearing aids, including hearing loops, FM systems, Infrared systems, and personal devices I can use when I'm in noisy social settings. I used those prior to getting the cochlear implant, and they worked quite well. However, I reached a point where I saw the cochlear implants had been improved a great deal, and decided it was time to go for it.

I still use such devices even with the cochlear implant when I find it difficult to hear. Yes, I struggle sometimes. My whole family was visiting last week, including 4 young adults between ages 19 and 22. Lots of energy and lots of talk. Did I miss some of it? I sure did, but I asked for repeats when it seemed logical. Lots of expended energy, but done while making great memories. It helps to understand that the stress created by working so hard to listen is exhausting. One has to know that taking a break is OK.

I encourage you to learn all you can about hearing assistive technology (HAT). It can make a world of difference for a person with hearing loss. ASL is beautiful, but it's only practical for those who are able to connect with other users.

Most of my hearing loss connections have come through involvement in The Hearing Loss Association of America (HLAA). I've met so many amazing people of all ages through this organization. It has taught me so much and given so many people hope for better technology as it develops. Check at http://www.hearingloss.org to see if there is a chapter near you. This organization turned my life around when I was slowly becoming a recluse due to hearing loss. Just learning you are not alone is a morale booster and motivator!

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

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@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 🙂

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@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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@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

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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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@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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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.

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@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.

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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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@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

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

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