1. < Brain Tumor

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?

Interested in more discussions like this? Go to the Brain Tumor Support Group.

Mentor
Julie, Volunteer Mentor | @julieo4 | Apr 14, 2020
In reply to @mikepa "@bigmqama @julieo4 I am the Eastern Chapter Coordinator for HLAA-PA. We have 7 chapters (one temporarily..." + (show)
@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

Jump to this post

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. 🙂

REPLY
Mentor
Julie, Volunteer Mentor | @julieo4 | Apr 14, 2020
In reply to @bigmqama "Thank you soo much. For the wonderful information Julie. Hopefully I willl find you at HLAAs..." + (show)
@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

Jump to this post

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

REPLY
bigmqama | @bigmqama | Apr 15, 2020

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

REPLY
2 replies
Mentor
Julie, Volunteer Mentor | @julieo4 | Apr 15, 2020
In reply to @bigmqama "Thank you Julie. I can’t seem to find you on the web site but will keep..." + (show)
@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

Jump to this post

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.

REPLY
mikepa | @mikepa | Apr 15, 2020
In reply to @bigmqama "Thank you Julie. I can’t seem to find you on the web site but will keep..." + (show)
@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

Jump to this post

@bigmqama I noticed you live in Elysburg - home of Knoebels amusement Park. Fun little place. It looks like you are in between a couple of our chapters. If you go to our HLAA PA State website (hlaa-pa.org) there is a pull down menu for Chapters. The Capital Region chapter is a good one in Harrisburg. Not sure how far that is for you. But their President Augusta Spandler is very active and would be happy to talk to you. And if it is too far to travel for a meeting, ask if they are going to start using Zoom or some other remote conferencing app for their meetings. Several Chapters have started using this because of the virus but I see it continuing in certain regions because of the remoteness of where people live, like Central and Western PA. We are going to use Zoom for our next State meeting in May/June.

Other Chapters that might work for you are Central in State College and Lebanon. I know very little about either of these. But there is an email contact for the president of each chapter if these are closer to you. I am a member of the State Advisory Council and my local Chapter is Chester County which meets in West Chester but also might go virtual in order to attract more elderly members who don't like to drive. I also am on the committee that runs the PA Walk4Hearing in Philadelphia in October each year.

If you ever want to contact me go to the State webpage mentioned above and hit the Contact Us button. It will take you to a page with different people to contact. Go to the bottom under Chapter Coordinator and send me (Mike Miles) an email then I can respond with my personal email address. They don't allow us to put email addresses on this blog.

There are a lot of handouts Julie or I can send you on best practices to communicate with people with hearing loss. There are also a lot of apps. Keep in touch. Mike

REPLY
2 replies
bigmqama | @bigmqama | Apr 15, 2020
In reply to @mikepa "@bigmqama I noticed you live in Elysburg - home of Knoebels amusement Park. Fun little place...." + (show)
@mikepa

@bigmqama I noticed you live in Elysburg - home of Knoebels amusement Park. Fun little place. It looks like you are in between a couple of our chapters. If you go to our HLAA PA State website (hlaa-pa.org) there is a pull down menu for Chapters. The Capital Region chapter is a good one in Harrisburg. Not sure how far that is for you. But their President Augusta Spandler is very active and would be happy to talk to you. And if it is too far to travel for a meeting, ask if they are going to start using Zoom or some other remote conferencing app for their meetings. Several Chapters have started using this because of the virus but I see it continuing in certain regions because of the remoteness of where people live, like Central and Western PA. We are going to use Zoom for our next State meeting in May/June.

Other Chapters that might work for you are Central in State College and Lebanon. I know very little about either of these. But there is an email contact for the president of each chapter if these are closer to you. I am a member of the State Advisory Council and my local Chapter is Chester County which meets in West Chester but also might go virtual in order to attract more elderly members who don't like to drive. I also am on the committee that runs the PA Walk4Hearing in Philadelphia in October each year.

If you ever want to contact me go to the State webpage mentioned above and hit the Contact Us button. It will take you to a page with different people to contact. Go to the bottom under Chapter Coordinator and send me (Mike Miles) an email then I can respond with my personal email address. They don't allow us to put email addresses on this blog.

There are a lot of handouts Julie or I can send you on best practices to communicate with people with hearing loss. There are also a lot of apps. Keep in touch. Mike

Jump to this post

Hi Mike we have the same last name! Thank you for the terrific information. i hope that we can stay in touch. I would love to have the handout that you mentioned.

REPLY
Mentor
Julie, Volunteer Mentor | @julieo4 | Apr 15, 2020
In reply to @mikepa "@bigmqama I noticed you live in Elysburg - home of Knoebels amusement Park. Fun little place...." + (show)
@mikepa

@bigmqama I noticed you live in Elysburg - home of Knoebels amusement Park. Fun little place. It looks like you are in between a couple of our chapters. If you go to our HLAA PA State website (hlaa-pa.org) there is a pull down menu for Chapters. The Capital Region chapter is a good one in Harrisburg. Not sure how far that is for you. But their President Augusta Spandler is very active and would be happy to talk to you. And if it is too far to travel for a meeting, ask if they are going to start using Zoom or some other remote conferencing app for their meetings. Several Chapters have started using this because of the virus but I see it continuing in certain regions because of the remoteness of where people live, like Central and Western PA. We are going to use Zoom for our next State meeting in May/June.

Other Chapters that might work for you are Central in State College and Lebanon. I know very little about either of these. But there is an email contact for the president of each chapter if these are closer to you. I am a member of the State Advisory Council and my local Chapter is Chester County which meets in West Chester but also might go virtual in order to attract more elderly members who don't like to drive. I also am on the committee that runs the PA Walk4Hearing in Philadelphia in October each year.

If you ever want to contact me go to the State webpage mentioned above and hit the Contact Us button. It will take you to a page with different people to contact. Go to the bottom under Chapter Coordinator and send me (Mike Miles) an email then I can respond with my personal email address. They don't allow us to put email addresses on this blog.

There are a lot of handouts Julie or I can send you on best practices to communicate with people with hearing loss. There are also a lot of apps. Keep in touch. Mike

Jump to this post

I love this! This is what HLAA is all about. People with hearing loss helping other people with hearing loss! Let's keep it up!!! <3

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 15, 2020
In reply to @julieo4 "I love this! This is what HLAA is all about. People with hearing loss helping other..." + (show)
@julieo4

I love this! This is what HLAA is all about. People with hearing loss helping other people with hearing loss! Let's keep it up!!! <3

Jump to this post

@julieo4 and @bigmqama, should you wish to exchange email addresses, please use the private message function. It's the secure way to share personal contact info rather than in the public forum.

REPLY
1 reply
Mentor
Julie, Volunteer Mentor | @julieo4 | Apr 15, 2020
In reply to @colleenyoung "@julieo4 and @bigmqama, should you wish to exchange email addresses, please use the private message function...." + (show)
@colleenyoung

@julieo4 and @bigmqama, should you wish to exchange email addresses, please use the private message function. It's the secure way to share personal contact info rather than in the public forum.

Jump to this post

Thank you for that suggestion Colleen. I didn't know that could be done. Still not sure how to find the private message function, but will look for it. Julie

REPLY
2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 15, 2020
In reply to @julieo4 "Thank you for that suggestion Colleen. I didn't know that could be done. Still not sure..." + (show)
@julieo4

Thank you for that suggestion Colleen. I didn't know that could be done. Still not sure how to find the private message function, but will look for it. Julie

Jump to this post

No problem. It's explained in the Get Started on Connect guide here: https://connect.mayoclinic.org/get-started-on-connect/
Simply put, click a member's @username to go to their profile page. Then click "Send Private Message."

@bigmqama, you'll find many (very knowledgeable) HLAA members here on Mayo Clinic Connect. A couple of years ago, Hearing Loss Association of America (HLAA), the Ida Institute and Mayo Clinic collaborated to create this support group for the benefit of all.

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.