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.

@contentandwell

@judyca7 your recent hearing loss sounds similar to mine. My hearing of sounds/volume hasn’t changed much but my speech recognition has degraded badly. One ear is now profound and the other severe.

Do you know what caused your hearing loss? I know it can happen with aging, but I believe that both cirrhosis and immunosuppressants can also cause that, but rarely. I think they exacerbated my loss which started in 2004. As my husband has aged his voice is less clear so it’s almost impossible for me to hear him the first time he says something.

Having hearing problems really is isolating. I had been going to water classes prior to the pandemic. It was a large friendly class but I was definitely an outsider because it was impossible for me to communicate over the sounds in the pool area and I have to pay a lot of attention to the class leader. This despite wearing my HAs into the pool - my head does not go under.

Phone calls with customer service people are impossible! Frequently they have strong accents and they always speak fast. My doctors are pretty accommodating.
JK

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JK.... more: so it is a constant balancing act. My hearing loss is also severe in one ear and profound in the other, no clarity at all now. Also have to be careful not to catch a cold or other illness. So with Covid-19 I am really just staying home 98% of the time; relying on texting friends since phone conversation is very difficult.
You are right about dealing with business calls..... the accents are difficult to work with and even when I explain the situation and ask the person to speak slowly, it often doesn't happen.
I know I have over time become much more isolated and it is often lonely. But it is just too hard to try and be with friends and be an active participant in the conversation. Can't do Zoom meetings or Skype because can't hear anything on computer. Gave up yoga and pilates because could not hear instructor. And on and on. Problems that I think all of us deal with every day. That's why this group is so important as it provides support and a chance to be heard. Thanks for listening.

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@barbb

@judyca7 Judy - you mentionproblems hearing on the phone. Are you using Caption Call or Captel which I find helps immensely with hearing?

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I have a caption call phone but it does not work very well..... often translation is incorrect and since my part of the conversation is not printed I'm left to try and figure out what was said. I have been paying several monthly bills over phone but may have to go to online accounts now. Did not really need the caption phone a few months ago but I am trying to work more with it now and get used to the errors. Will look into the Captel phone.... thanks. Judy

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@judyca7

JK.... more: so it is a constant balancing act. My hearing loss is also severe in one ear and profound in the other, no clarity at all now. Also have to be careful not to catch a cold or other illness. So with Covid-19 I am really just staying home 98% of the time; relying on texting friends since phone conversation is very difficult.
You are right about dealing with business calls..... the accents are difficult to work with and even when I explain the situation and ask the person to speak slowly, it often doesn't happen.
I know I have over time become much more isolated and it is often lonely. But it is just too hard to try and be with friends and be an active participant in the conversation. Can't do Zoom meetings or Skype because can't hear anything on computer. Gave up yoga and pilates because could not hear instructor. And on and on. Problems that I think all of us deal with every day. That's why this group is so important as it provides support and a chance to be heard. Thanks for listening.

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Do you know that the Google Meet platform has insta captions? It's not perfect, but it mirrors the apps available on the cell phone that change speech to text. ZOOM is working on this for their platform. I don't know what's taking them so long, but HLAA has been working on this for some time. ZOOM needs to hear from people with hearing loss who want/need captions. It is the way of the future and we do not want to be left out. We have a CART provider caption our HLAA chapter meetings. There's a cost to that, of course. Check out the national HLAA website for some of the webinars done on Zoom. They are all captioned. http://www.hearingloss.org The goal, always, is to keep people with hearing loss actively involved in life.

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I am wondering if anybody of this site has pulsating tinnitus and what can be done about it

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@judyca7

Hi JK..... I have Takayahu's Arteritis, an autoimmune disease diagnosed 20 years ago. It can cause all kinds of problems over time. Did very well until 4 years ago. At that time I had to be treated for a lung infection caused by the Takayahus and had to go off the immune suppressants while on a combo of three antibiotics. After 4 months on these antibiotics I developed vertigo which I have 24 hours a day. A week later a significant loss of hearing which has gradually gotten worse. It's all about keeping the immune system suppressed enough do that inflammation does not cause all kinds of problems. When inflammation from the Takayahu's gets high, there is more hearing loss.

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@judyca7 I had never heard of Takayasu's arteritis before so I googled. I’m sorry yours has degenerated, causing so many problems.

From what you say it sounds as if Takayasu's arteritis was not a direct cause of your hearing loss. Just what you didn’t need though, another complication. I’m surprised that the hearing loss has gotten worse, I thought when there was a specific cause like the antibiotics, that it didn’t usually get worse. I can’t imagine living with vertigo all the time either. I get light-headed many mornings and I hate it. I won’t drive until it goes away.

Hopefully you will not have much inflammation going forward. I don’t think the type of loss that I have is affected by inflammation, but I honestly don’t know!

We also stay home all of the time except to take walks. Everything is delivered.

We do family zooms with my son and daughter and their spouses but I end up frustrated. It is a bit better if I have the audio from my iPad stream directly into my HAs.

My HAs are Oticons and when I go to any classes the instructor is happy to wear my connect clip, an Oticon accessory that streams his/her voice directly into my HAs. Phonak has a similar device called the Roger pen. They really help a lot.
JK

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@julieo4

Do you know that the Google Meet platform has insta captions? It's not perfect, but it mirrors the apps available on the cell phone that change speech to text. ZOOM is working on this for their platform. I don't know what's taking them so long, but HLAA has been working on this for some time. ZOOM needs to hear from people with hearing loss who want/need captions. It is the way of the future and we do not want to be left out. We have a CART provider caption our HLAA chapter meetings. There's a cost to that, of course. Check out the national HLAA website for some of the webinars done on Zoom. They are all captioned. http://www.hearingloss.org The goal, always, is to keep people with hearing loss actively involved in life.

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@julieo4, while you're on the subject of Zoom captions, I thought I'd add some information. There is an upcoming Zoom webinar titled "Ask Me Anything with Eric Yuan" on Aug 19. Eric is the CEO of Zoom so it should be interesting. You can find information about Zoom webinars here: https://zoom.us/events. I've registered for the event and in the confirmation that I received back, questions can be asked in advance. I responded with the following message and hope that these questions get answered:
I will be participating in the "Ask Me Anything" webinar on Aug 19.  In case I don't get a chance to ask these questions, I'll let you know now.
1) What is the status of automatic captions?  I watched a Zoom training webinar that used the captions and was impressed with the speed and accuracy.

2) When captions are available, will they be free?

3) Currently, if the chat box is not displayed and captions are available, the incoming chat messages overwrite the captions.  Can chat messages be moved to not interfere with captions?

Thank you

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@tonyinmi

@julieo4, while you're on the subject of Zoom captions, I thought I'd add some information. There is an upcoming Zoom webinar titled "Ask Me Anything with Eric Yuan" on Aug 19. Eric is the CEO of Zoom so it should be interesting. You can find information about Zoom webinars here: https://zoom.us/events. I've registered for the event and in the confirmation that I received back, questions can be asked in advance. I responded with the following message and hope that these questions get answered:
I will be participating in the "Ask Me Anything" webinar on Aug 19.  In case I don't get a chance to ask these questions, I'll let you know now.
1) What is the status of automatic captions?  I watched a Zoom training webinar that used the captions and was impressed with the speed and accuracy.

2) When captions are available, will they be free?

3) Currently, if the chat box is not displayed and captions are available, the incoming chat messages overwrite the captions.  Can chat messages be moved to not interfere with captions?

Thank you

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All good questions Tony. Thanks for taking this on.

I'll try to get into the meeting too, but if I don't make it I'd like to have options to re-position chat box and/or captions on my screen. Maybe something as simple as locating captions at top or bottom or side. Sometimes we see faces and sometimes ppt slides so there is no ONE good place for captions.

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@arrowshooter

All good questions Tony. Thanks for taking this on.

I'll try to get into the meeting too, but if I don't make it I'd like to have options to re-position chat box and/or captions on my screen. Maybe something as simple as locating captions at top or bottom or side. Sometimes we see faces and sometimes ppt slides so there is no ONE good place for captions.

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@arrowshooter If you cannot make the webinar, it looks like it will be archived. If my questions get answered, I'll report back on the answers.
Tony in Michigan

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Good job Tony. You get any improvements and we'll double your salary.

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@arrowshooter

Good job Tony. You get any improvements and we'll double your salary.

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@arrowshooter You are right! There is no perfect place for Zoom captions. It would be nice to be able to move the captions box dynamically during a meeting or webinar. The screen changes due to people joining or leaving a meeting, plus PowerPoint slides can be popped in or out. When someone shares a screen, it takes up the entire one side of the screen, if captions are enabled, Zoom should adjust the size to reserve the bottom of the shared screen for captions. A big problem is that not everyone has a large screen and it may be difficult to see everything. Regardless, there could be improvements in how Zoom captions are handled.
Regarding my salary, well, there's no doubling ZERO, LOL.
Tony in Michigan

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