Losing hearing because of brain tumor

Posted by bigmqama @bigmqama, Apr 9, 2020

I had a brain tumer when I was a child. I am now 57. Because of the tumer I have nerve damage and over the years have been slowly losing my hearing. Does anyone know how I can be ready for someday being deaf? I don’t know sign language and am not able to get a cochlear implant. What do I do if one day I wake up deaf?

@julieo4

I hear you and I feel your frustration and your fear. I'm wondering if the doctors or hearing aid fitters (audiologist I assume), have shared any information with you about hearing assistive technology that goes beyond hearing aids? How to use the telecoils in your hearing aids with unique technologies, like hearing loops, etc. ? I managed for years with failing hearing because I used every bit of technology I could get my hands on. Who told me about this and how to use it; how to get it? Not the doctors or the hearing healthcare pros. I learned nearly everything I know from other people like me. I learned how many of us there are and that I was not alone. That helped more than I can say. How did I meet those people? Through the organization called The Hearing Loss Association of America. (HLAA). It was called Self Help for Hard of Hearing People, Inc. (SHHH) then, founded in 1979. It's still the same organization but the new name makes it easier to find online, thus the name change in 2006.

I started a chapter in my home town 35 years ago. By so doing I came out of my personal hearing loss hiding place and went public so I could meet those other people who were all hiding just as I was. We were all amazed how much it helped to share our experiences. Together we learned, we educated and we advocated once we knew what to advocate for. There are chapters of HLAA in Pennsylvania. I hope there is one near you. Maybe you've been told about HLAA from the medical professionals you have seen. Maybe not. You can get a lot of information on the HLAA website. http://www.hearingloss.org

I would be happy to communicate with you personally, but I cannot provide my e-mail address on this site. If you go to http://www.hlaawi.org you will find the newsletter I edit and can track me down. Yes, AVA is one of the apps that convert speech to text. There are several of them. Live transcribe is one of the favorites, but is only available on android phones. There are others. These technologies are emerging because the people who have been members of SHHH/HLAA have pushed for them. Prior to SHHH/HLAA, hard of hearing people didn't even have an identity.

You can live well with hearing loss, but you have to learn how. While sign language is a solution for a handful of people, few people who lose hearing as adults use it. Why? Because they live, work and socialize in the hearing world and want to remain in it. Something can be done to help you, but you have to find that help. You know, even if you were to become totally deaf, you would still be able to communicate with those speech to text apps. Meetings and lectures can also be captioned. You can remain in the hearing mainstream with technology if you know how to access it and use it. I wish you well.

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@julieo4
Hi,
I’ve been a member of HHLA for years and go to a local chapter’s monthly meetings. It’s an invaluable resource. I couldn’t have said it better about reaching out to these organizations and participating in online forums like the SayWhat club and also researching on your own. The only assisted devices the audiologists or hearing aid dispensers know about are the proprietary ones that come with the hearing aids or CIs. It is up to the individual who usually does not know where to start. That’s why I constantly talk to others who wear hearing aids about what is available.

I have an Audi who is so interested in what I know and passes it along to her patients….my ENT doctor wears hearing aids and I have showed him a few apps he can use on his phone. They are rare among the providers.
Kudos to you for starting a chapter so long ago. It’s not easy to start and run one.

Being pro active depends on the type of individual you are and we have to get out of our comfort zone and push for things. It’s gets easier to do so and makes you feel more powerful and on control.

FL Mary

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@bigmqama

Funny that you say that. My doctor said that nothing can be done. That is depressing. I can not have an mri because there is a map in my head from the surgery. Boy, I am so glad that you answered you seem very knowledgable. I have not gotten any help. Now that I know who to ask, I will ask for sure. Thank you! I live in pa and bought my hearing aid in pa and have not gotten info. My doctor in Boston last yr said that they could recamend an aid but I Had just gotton a new One so he dropped the subject? .this yr I am Going to ask what they think. Have you ever heard of an app called Ava? It was developed at mass eye and ear. No one told me about it but I started to get their news letter and read about it. It Basicly Is you or the speaker talks and it types. Is that what you mean?

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@julieo4
Hi,

I have tried AVA but didn’t care for it. Other speakers have to have it loaded onto their phone. There is an app for android phones called live transcribe and it’s free. If you have an iPhone or an android there’s another app called OTTER . Google the place store on your phone and browse through what they have. TextHear is another I have loaded when LiveTransctibe fails me (it’s WiFi dependent).
I use Live Transcribe on my Samsung all the time especially now with people wearing masks. I also use Innocaption+ for phone calls on my cell phone that allow me to hear and read what the caller is saying and has visual voice mail. I have a Captel phone for my landline .
We need a landline here because of the fax machine.

If you research and come across any apps you like or have questions please ask away. Some people have better experiences with these apps than others and I think it depends on how good the mic is on a particular phone. Don’t pay for any as there are too many free ones available.

FL Mary

REPLY
@julieo4

I hear you and I feel your frustration and your fear. I'm wondering if the doctors or hearing aid fitters (audiologist I assume), have shared any information with you about hearing assistive technology that goes beyond hearing aids? How to use the telecoils in your hearing aids with unique technologies, like hearing loops, etc. ? I managed for years with failing hearing because I used every bit of technology I could get my hands on. Who told me about this and how to use it; how to get it? Not the doctors or the hearing healthcare pros. I learned nearly everything I know from other people like me. I learned how many of us there are and that I was not alone. That helped more than I can say. How did I meet those people? Through the organization called The Hearing Loss Association of America. (HLAA). It was called Self Help for Hard of Hearing People, Inc. (SHHH) then, founded in 1979. It's still the same organization but the new name makes it easier to find online, thus the name change in 2006.

I started a chapter in my home town 35 years ago. By so doing I came out of my personal hearing loss hiding place and went public so I could meet those other people who were all hiding just as I was. We were all amazed how much it helped to share our experiences. Together we learned, we educated and we advocated once we knew what to advocate for. There are chapters of HLAA in Pennsylvania. I hope there is one near you. Maybe you've been told about HLAA from the medical professionals you have seen. Maybe not. You can get a lot of information on the HLAA website. http://www.hearingloss.org

I would be happy to communicate with you personally, but I cannot provide my e-mail address on this site. If you go to http://www.hlaawi.org you will find the newsletter I edit and can track me down. Yes, AVA is one of the apps that convert speech to text. There are several of them. Live transcribe is one of the favorites, but is only available on android phones. There are others. These technologies are emerging because the people who have been members of SHHH/HLAA have pushed for them. Prior to SHHH/HLAA, hard of hearing people didn't even have an identity.

You can live well with hearing loss, but you have to learn how. While sign language is a solution for a handful of people, few people who lose hearing as adults use it. Why? Because they live, work and socialize in the hearing world and want to remain in it. Something can be done to help you, but you have to find that help. You know, even if you were to become totally deaf, you would still be able to communicate with those speech to text apps. Meetings and lectures can also be captioned. You can remain in the hearing mainstream with technology if you know how to access it and use it. I wish you well.

Jump to this post

I have not gotten any help from anyone but I will ask. I Iive in a very royal area. That is why I
Relay on the Internet. I also do not drive. Which makes it worse. I Have been to the associations web site but just found it and need to study it. Do they have any online help?

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@imallears

@julieo4
Hi,

I have tried AVA but didn’t care for it. Other speakers have to have it loaded onto their phone. There is an app for android phones called live transcribe and it’s free. If you have an iPhone or an android there’s another app called OTTER . Google the place store on your phone and browse through what they have. TextHear is another I have loaded when LiveTransctibe fails me (it’s WiFi dependent).
I use Live Transcribe on my Samsung all the time especially now with people wearing masks. I also use Innocaption+ for phone calls on my cell phone that allow me to hear and read what the caller is saying and has visual voice mail. I have a Captel phone for my landline .
We need a landline here because of the fax machine.

If you research and come across any apps you like or have questions please ask away. Some people have better experiences with these apps than others and I think it depends on how good the mic is on a particular phone. Don’t pay for any as there are too many free ones available.

FL Mary

Jump to this post

Thank you for sharing all this information. All these emerging technologies were only dreamed about a decade ago. Thanks to HLAA and people who want more and are willing to work for it, research and development has been done because people listened to us. I always quote the founder of HLAA, Howard 'Rocky' Stone, who always told us. "If you want to solve a problem, you have to become part of the solution". So true. Unfortunately, the majority of people with 'the problem' don't do that. Thanks to those, like you, who do.

REPLY
@imallears

@julieo4
Hi,

I have tried AVA but didn’t care for it. Other speakers have to have it loaded onto their phone. There is an app for android phones called live transcribe and it’s free. If you have an iPhone or an android there’s another app called OTTER . Google the place store on your phone and browse through what they have. TextHear is another I have loaded when LiveTransctibe fails me (it’s WiFi dependent).
I use Live Transcribe on my Samsung all the time especially now with people wearing masks. I also use Innocaption+ for phone calls on my cell phone that allow me to hear and read what the caller is saying and has visual voice mail. I have a Captel phone for my landline .
We need a landline here because of the fax machine.

If you research and come across any apps you like or have questions please ask away. Some people have better experiences with these apps than others and I think it depends on how good the mic is on a particular phone. Don’t pay for any as there are too many free ones available.

FL Mary

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Thank you for the great info. I will check them ont.

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@bigmqama

I have not gotten any help from anyone but I will ask. I Iive in a very royal area. That is why I
Relay on the Internet. I also do not drive. Which makes it worse. I Have been to the associations web site but just found it and need to study it. Do they have any online help?

Jump to this post

I hope you take time to study the HLAA website. There are several chapters in PA, but since I don't know the town where you live I cannot recommend one because the site requires putting in a city or geographical location. Go to the link for chapters and explore it. You can also contact HLAA for information. Right now, they are operating with a small crew due to the virus. I'm sure it will take a bit longer than usual to hear from them. Again, I cannot put an e-mail address on this post, so I cannot give you that info. It is on the website. http://www.hearingloss.org Some of the chapters are using ZOOM to communicate now. Veterans across the entire United States are participating in a virtual chapter via ZOOM. I see this happening more and more as time passes and the technology improves. It can actually include captioning now. We had a state meeting in Wisconsin last Saturday with 17 people that was captioned. With a device I plug into my laptop, I can hear clearly enough to not need the captioning. That device is a simple $50 neckloop used with the telecoils in my hearing aid and cochlear processor. Again, technology is amazing. We do not have to be alone with our hearing loss. We just have to be willing to explore options and be open to learning about them.

REPLY
@julieo4

I hope you take time to study the HLAA website. There are several chapters in PA, but since I don't know the town where you live I cannot recommend one because the site requires putting in a city or geographical location. Go to the link for chapters and explore it. You can also contact HLAA for information. Right now, they are operating with a small crew due to the virus. I'm sure it will take a bit longer than usual to hear from them. Again, I cannot put an e-mail address on this post, so I cannot give you that info. It is on the website. http://www.hearingloss.org Some of the chapters are using ZOOM to communicate now. Veterans across the entire United States are participating in a virtual chapter via ZOOM. I see this happening more and more as time passes and the technology improves. It can actually include captioning now. We had a state meeting in Wisconsin last Saturday with 17 people that was captioned. With a device I plug into my laptop, I can hear clearly enough to not need the captioning. That device is a simple $50 neckloop used with the telecoils in my hearing aid and cochlear processor. Again, technology is amazing. We do not have to be alone with our hearing loss. We just have to be willing to explore options and be open to learning about them.

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@bigmqama @julieo4 I am the Eastern Chapter Coordinator for HLAA-PA. We have 7 chapters (one temporarily inactive) around Philly. We are working on getting chapters in the Scranton area and Lehigh Valley. If you live in the eastern part of PA I can lead you towards the closest chapter. We also have 3 in the Central part and 2 in the Western part. Let me know where you live and I can point you to the right person in your area. Mike

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@julieo4

Thank you for sharing all this information. All these emerging technologies were only dreamed about a decade ago. Thanks to HLAA and people who want more and are willing to work for it, research and development has been done because people listened to us. I always quote the founder of HLAA, Howard 'Rocky' Stone, who always told us. "If you want to solve a problem, you have to become part of the solution". So true. Unfortunately, the majority of people with 'the problem' don't do that. Thanks to those, like you, who do.

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Thank you soo much. For the wonderful information Julie. Hopefully I willl find you at HLAAs website.. by the way I live in Elysburg pa

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@mikepa

@bigmqama @julieo4 I am the Eastern Chapter Coordinator for HLAA-PA. We have 7 chapters (one temporarily inactive) around Philly. We are working on getting chapters in the Scranton area and Lehigh Valley. If you live in the eastern part of PA I can lead you towards the closest chapter. We also have 3 in the Central part and 2 in the Western part. Let me know where you live and I can point you to the right person in your area. Mike

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Thank you Mike. I found the national website chapter page confusing as it is a map with pins in it. I wish they would list communities where chapters exist. So many chapters are not named for the communities they are in, on the alphabetical list. Mine, Fox Valley Chapter is one of them. The location is not part of the identity unless you are familiar with the region. I hope you will be able to direct bigmgama to a support group in PA. 🙂

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@bigmqama

Thank you soo much. For the wonderful information Julie. Hopefully I willl find you at HLAAs website.. by the way I live in Elysburg pa

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You are welcome. I hope Mikepa can lead you to a chapter in PA. I hope we meet again! 🙂 Meanwhile, if you want to connect with me, check out the info at http://www.hlaawi.org At Fox Valley Chapter. Julie Olson

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Thank you Julie. I can’t seem to find you on the web site but will keep trying. May I give you my email address? I do have a question if you have time. My sister and I have problems at times because I don’t hear her and I have trouble with her tone. Do you know of a way to help this. She seems agreeable to try a text To type app but wants to understand how it works and how it will help her.. do I carry my phone around all day? I hear fine if we are Sitting at the table but if She walKs behind I sometimes have problems and. I am frustrated and she says forget it

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@bigmqama

Thank you Julie. I can’t seem to find you on the web site but will keep trying. May I give you my email address? I do have a question if you have time. My sister and I have problems at times because I don’t hear her and I have trouble with her tone. Do you know of a way to help this. She seems agreeable to try a text To type app but wants to understand how it works and how it will help her.. do I carry my phone around all day? I hear fine if we are Sitting at the table but if She walKs behind I sometimes have problems and. I am frustrated and she says forget it

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If you go to http://www.hlaawi.org You will find a link on the home page for the state newsletter. On page 4 you will find a list of board and off board members. I am an off board member. (Newsletter Editor) My e-mail address is there. It's also under chapters on the national site, but it's hard to find there. If you e-mail me, please put 'hearing loss question' or 'Mayo Clinic Connect Participant' in the subject header so it doesn't go to spam.

Among the most frustrating comments people can make to people who don't hear well are "Never mind, it wasn't important" or "Forget it". It makes us feel as if we are not important. We do have to realize that we frustrate them and it's a two way street. Best advice I can give a person who is around me a lot is "Get my attention before you talk to me." That's not always easy, but it is exactly what we need. We have to see the speaker to understand them.

We learn that one on one conversations always work best. Sitting at a table is perfect because we can see each other. I'm not sure if you're asking about talking to your sister in person or on the phone. Have you tried ZOOM or Skype on the cell phone? You probably should look into an app called Innocaption that allows regular cell phone calls to be captioned as they take place. Also, are you aware of captioned telephones? (CapTel and CaptionCall are the two big ones.) Those make a big difference for some people too as the entire conversation comes to you captioned, but you speak. There is so much helpful technology out there. If your sister is willing to work with you to learn about these things you are fortunate. You sound like a person who is willing to learn new things. That is definitely a key to living well with hearing loss.

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