How does hearing loss change you?

Posted by joangela @joangela, May 11, 2019

For me, hearing loss has always been a part of my life. Those darn hearing tests in elementary school always put me in the category of hearing loss. Now, that I am much older, in my late 50s my hearing loss is profound. It is so bad, even my hearing family, has a real hard time adjusting to it.
How it has really changed me?
I was a small business owner, and a top notch sales person. I was a huge people person and an excellent communicator. It’s all gone.
A major change in my life.
How about you?

Interested in more discussions like this? Go to the Hearing Loss Support Group.

@joangela

Hi Mtnyankee,
I can sure identify with staying away from loud noises. I had to leave a concert because it was too loud. That’s been over 10 years ago, and it was Elton John. I really didn’t want to leave, but had to.
I am sorry you had to give up your church. Very sad.
I can still go to movies and I get closed captions. Could you wear ear plugs and do that? Have a good day.
JoAngela

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Normal ear plug doesn't block music out entirely but then i can't hear priest. Just ordered custom ear plug like musicians use. Audiologist thinks it will work. Hope so.

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I use Innocaption all the time with my cellphone. My Hearing Aid is ok if I am in a Looped room. I have an appointment for a
CI evaluation in early June. I struggle all day to hear. It is exhausting. But, what if I have permanent dizziness or headaches
with a CI. A quandary.

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My hearing loss started when I was keeping score cards for my husband and the contestants who were competing on metal targets. In 1992 I went to have the hearing checked; sure enough, both ears were involved. We switched to kayaking. I was teaching full time, and noticing I wasn't really hearing the kids correctly. Since I was a reading specialist, and they were high school students, that wasn't good. By 2008 I had to stop. They estimated the ability in my right ear at 40%, and about 85% in my left ear. I was no longer joiniing my husband though we had always used double hearing protection. When I showed up at the audiologist office, she had new devices that brought back a goodly portion of my communication. It is much better now. The Doctor has said I am eligible for an aide that is fixed to the skull. I am very skiddish about this as there is no going back if it is not a good solution. Anyone have any thoughts on this device?

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So many of these posts make me realize what a positive difference HLAA has made in my life; in relationships with family, friends and co-workers. It is so helpful to meet other people who have these experiences. You can feel it in the comments people have made in this conversation, but It's even better in person! We have had programs through HLAA that involved spouses, significant others, and family members sharing their experiences. It helps us to see how they feel about our hearing loss. Of course, many programs are presented by people who experience hearing loss themselves. Sometimes it's just about sitting around a table talking....one at a time, following the communication rules we need to participate. It's not a pity party. It's a learning venture. We learn how to advocate for ourselves. We find out what communication access is, and that we are entitled to it in public places IF WE ASK FOR IT. It's not possible to ask for accommodations when you don't know what you need. This goes back to the need to learn about various technologies, about what hearing loss does to a person's psycho social image, and the value of learning how to explain it to others. HLAA Is about mutual help. If there isn't an HLAA chapter in your area, consider starting one. Many chapters develop when 4-5 people get together to talk. Of course you can do that without becoming part of an organization, but when you learn all that HLAA has done for the hard of hearing population you will probably want to be a part of the HLAA movement to make hearing loss an issue of concern. And yes, the national conventions are an amazing opportunity to learn and meet people who 'get it'. Worth every penny to attend. They are held annually in June, in different parts of the country. Last year it was Minneapolis, This year Rochester NY, next year? Not sure, but it will wither be south or west. Save your nickles and dimes. They add up and it's an amazing experience to attend a large event where hearing loss is the norm. 🙂

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@llouiset

My hearing loss started when I was keeping score cards for my husband and the contestants who were competing on metal targets. In 1992 I went to have the hearing checked; sure enough, both ears were involved. We switched to kayaking. I was teaching full time, and noticing I wasn't really hearing the kids correctly. Since I was a reading specialist, and they were high school students, that wasn't good. By 2008 I had to stop. They estimated the ability in my right ear at 40%, and about 85% in my left ear. I was no longer joiniing my husband though we had always used double hearing protection. When I showed up at the audiologist office, she had new devices that brought back a goodly portion of my communication. It is much better now. The Doctor has said I am eligible for an aide that is fixed to the skull. I am very skiddish about this as there is no going back if it is not a good solution. Anyone have any thoughts on this device?

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Cochlear implants have been amazing for a lot of folks. They hear better on phones for one thing.music does not sound as good. Advanced Biotics is the best for music. Cochlear has the most acccessibiliry by way of apple phones . Med- el is good also. 3 major companies. People who are late deafened have a tendency have better results. I was born hearing impaired even incorrectly diagnosed till 16. The Hearing association can answer your questions. Their convention ( Rochester, New York in June) helped me a lot with everyday folks answering questions . One person in the Utah convention ( 2 years ago) has a helpful poodle convincing me of this. Next year it may happen. I am an candidate but I am holding as long as I can. I have no family or friends to worry about. I have folks I communicate with on the street.- but not friend category. Books / critters. Are in my life.

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@llouiset

My hearing loss started when I was keeping score cards for my husband and the contestants who were competing on metal targets. In 1992 I went to have the hearing checked; sure enough, both ears were involved. We switched to kayaking. I was teaching full time, and noticing I wasn't really hearing the kids correctly. Since I was a reading specialist, and they were high school students, that wasn't good. By 2008 I had to stop. They estimated the ability in my right ear at 40%, and about 85% in my left ear. I was no longer joiniing my husband though we had always used double hearing protection. When I showed up at the audiologist office, she had new devices that brought back a goodly portion of my communication. It is much better now. The Doctor has said I am eligible for an aide that is fixed to the skull. I am very skiddish about this as there is no going back if it is not a good solution. Anyone have any thoughts on this device?

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I am not ready for a cochlear implant either for the same reason, even though I am eligible for one. To me it is so final. Glad they are there, when I reach that point. My audiologist said technology is working on improving them further, so I am waiting. 😁

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Hearing Loss can be a speed bump in your life but only if you want it to be. Learning about it takes time. Accepting it once you understand why you have it and how you can work with it will help you take one day at a time. You are you and hearing loss doesn't define you. It is a part of you and helping yourself work around it and with it is what you need to think about. No one else can do that for you. Working with others who share this same challenge is one idea that has worked for me as it has with others around this globe. Finding ways to use all of your senses to the best of you abilities is step one. Work with the professionals that are trained to help discuss and collaborate with you on finding, testing, purchasing and using the various tools of technology available to hear better/well. And that doesn't end there. With our computer and internet age always expanding, there are exciting ways to learn about how to access accessibility at all levels of functioning for our time at work, school, in our communities and in at home. We can find this through the various state/national/international organizations that advocate, education and sponsor work, research and assistance in our hearing loss communities. All we need to do is look in our libraries, attend a local meeting, or 'Google' a hearing loss organization.
I have been hard of hearing/deaf since birth but only discovered it when I turned around 50 years of age when my employer decided they had enough of my shouting at work (a consequence of HOH people when they can't hear - they speak loudly). Hearing aids did little initially because my brain couldn't take the sudden noise coming into my brain. I had headaches and earaches everyday. But over time and new digital hearing aids, with medications for my migraines, I learned to hear a part of the speech - enough so that I could advance my education (MBA) and my career in nursing.
I volunteered my time for the Hearing Loss Association of America - local chapter as well as for the Board of Trustees for 10-12 years. I also sat on the Governors Counsel for The Deaf and Hard of Hearing in the State for three years and contributed my knowledge by helping the legislators and Governor understand that it truly helped the kids to have hearing aids instead of all that worthless therapy and not hear. They eventually passed a law for all kids to have the aids/CI's covered up to 18 yrs of age - one of the first states in the nation. I also served on the Council for the Disability in town where we lived and advocated for the Hard of Hearing. I was appointed by the Mayor after speaking up for those who had no voice on certain matters. I served for three years. It's amazing what one can do, it you put your mind to the matter. Even if you have various dis...abilities, doesn't matter. I have many of them but no one sees them because they see the outcome of what I am doing. Not what I am.
I wear bilateral Resound Hearing aids that are on my iPhone. I have four programs that I use for various environments. I have tinnitus from a postop surgical mistake and had toxic overdose from the medications. One program provides me with music for the tinnitus. The second program is for the induction loop system (which I am an Advocate for all of the time). The third program is for noisy places (like restaurants) and the fourth is the standard program. I don't need any other devices to make my life useful other than a loop in places where I want to hear well. But not all public places have the loop system yet. But that 's another story for another time. Any comments - questions - thoughts can be directed to me at any time.

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@nurseheadakes

Hearing Loss can be a speed bump in your life but only if you want it to be. Learning about it takes time. Accepting it once you understand why you have it and how you can work with it will help you take one day at a time. You are you and hearing loss doesn't define you. It is a part of you and helping yourself work around it and with it is what you need to think about. No one else can do that for you. Working with others who share this same challenge is one idea that has worked for me as it has with others around this globe. Finding ways to use all of your senses to the best of you abilities is step one. Work with the professionals that are trained to help discuss and collaborate with you on finding, testing, purchasing and using the various tools of technology available to hear better/well. And that doesn't end there. With our computer and internet age always expanding, there are exciting ways to learn about how to access accessibility at all levels of functioning for our time at work, school, in our communities and in at home. We can find this through the various state/national/international organizations that advocate, education and sponsor work, research and assistance in our hearing loss communities. All we need to do is look in our libraries, attend a local meeting, or 'Google' a hearing loss organization.
I have been hard of hearing/deaf since birth but only discovered it when I turned around 50 years of age when my employer decided they had enough of my shouting at work (a consequence of HOH people when they can't hear - they speak loudly). Hearing aids did little initially because my brain couldn't take the sudden noise coming into my brain. I had headaches and earaches everyday. But over time and new digital hearing aids, with medications for my migraines, I learned to hear a part of the speech - enough so that I could advance my education (MBA) and my career in nursing.
I volunteered my time for the Hearing Loss Association of America - local chapter as well as for the Board of Trustees for 10-12 years. I also sat on the Governors Counsel for The Deaf and Hard of Hearing in the State for three years and contributed my knowledge by helping the legislators and Governor understand that it truly helped the kids to have hearing aids instead of all that worthless therapy and not hear. They eventually passed a law for all kids to have the aids/CI's covered up to 18 yrs of age - one of the first states in the nation. I also served on the Council for the Disability in town where we lived and advocated for the Hard of Hearing. I was appointed by the Mayor after speaking up for those who had no voice on certain matters. I served for three years. It's amazing what one can do, it you put your mind to the matter. Even if you have various dis...abilities, doesn't matter. I have many of them but no one sees them because they see the outcome of what I am doing. Not what I am.
I wear bilateral Resound Hearing aids that are on my iPhone. I have four programs that I use for various environments. I have tinnitus from a postop surgical mistake and had toxic overdose from the medications. One program provides me with music for the tinnitus. The second program is for the induction loop system (which I am an Advocate for all of the time). The third program is for noisy places (like restaurants) and the fourth is the standard program. I don't need any other devices to make my life useful other than a loop in places where I want to hear well. But not all public places have the loop system yet. But that 's another story for another time. Any comments - questions - thoughts can be directed to me at any time.

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@nurseheadakes, I'm glad you've joined the Hearing Loss group discussions. You might also be interested in this discussion:

- Do you know about Telecoils & Hearing Loops in Public Spaces? https://connect.mayoclinic.org/discussion/do-you-know-about-telecoils-hearing-loops-in-public-spaces/

It sure seems like hearing loss brought out your advocacy strengths. Is advocating part of personality or did this come out when you saw opportunities for improvement in the area of hearing loss and disability injustices?

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@colleenyoung

@nurseheadakes, I'm glad you've joined the Hearing Loss group discussions. You might also be interested in this discussion:

- Do you know about Telecoils & Hearing Loops in Public Spaces? https://connect.mayoclinic.org/discussion/do-you-know-about-telecoils-hearing-loops-in-public-spaces/

It sure seems like hearing loss brought out your advocacy strengths. Is advocating part of personality or did this come out when you saw opportunities for improvement in the area of hearing loss and disability injustices?

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Experience was the driving force for me. I didn't like not hearing enough or like other people. True, I was 'disabled' but I wanted to be 'able' to do things on my own as best as I could. (with some help perhaps. Hearing through a device just wasn't enough. I had some residue hearing but it was the understanding what people were saying - was what I couldn't get enough of. THAT is what aggravated me all of the time. People talking too fast, loud sounds, background noises, mustaches that covered up lips, chewing gum, and people looking away from me so I couldn't read their lips, all contributed to me being unable to be a part of any conversation or activity. Because I didn't participate - others thought me aloof or if I answered wrong - I was 'mental' or off my rocker. I never thought much about it other than I thought they were wrong and I was right!
Remembering back to the time when I first discovered that I was hard of hearing, I had to work with the new technology then - analog hearing aids and lip reading. Then it was onto digital hearing aids and HAT (assistive listening devices) like my FM system. Ugh. Then I moved on to my iPhone and the Resound hearing aids that I discovered had the t-coil in it and became a promoter of the Induction Hearing loop. It was in 2006, when I participate in a state conference when I was introduced to what it could do for hearing loss people. I could hear on the cell phone. I could hear in a 'looped' room or auditorium or even in a place of worship. I cried for the first time when I could hear EVERYTHING for the first time in my life when in the 'loop.' It changed my life from that day on.
I was a leader in the HLAA/Chapter/State Board world and took it on as a mantel - that if I could tell anyone and everyone about the loop, I would, and I did. I worked on it at the local level as well as the state level. I even put on a state conference which helped to spread the work both by mouth as well as by social media. It was promoted at the National HLAA level then and continues to this day. I presented my Looping conference at the National HLAA convention the following year. Since I walk and talk as a hard of hearing person, I take every opportunity to empower others to learn about how it is to live as a hard of hearing person. Everyone has some type of speed bump in their life. I have deck of them - hearing loss is only one card that I carry. While I may be disability, that hasn't stopped me from doing whatever I wanted to do in this life. I want more looping so I can hear and others can hear too!
There is too much out there to just sit and sulk....just look at the past history and see what other people who have had difficulties and in their lives - see what discoveries have been done or what mountains have been climbed. Anything can be achieved. Not time for dwelling on the past...that is gone. Today matters because tomorrow is coming. Get going.... !!!!

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@nurseheadakes

Experience was the driving force for me. I didn't like not hearing enough or like other people. True, I was 'disabled' but I wanted to be 'able' to do things on my own as best as I could. (with some help perhaps. Hearing through a device just wasn't enough. I had some residue hearing but it was the understanding what people were saying - was what I couldn't get enough of. THAT is what aggravated me all of the time. People talking too fast, loud sounds, background noises, mustaches that covered up lips, chewing gum, and people looking away from me so I couldn't read their lips, all contributed to me being unable to be a part of any conversation or activity. Because I didn't participate - others thought me aloof or if I answered wrong - I was 'mental' or off my rocker. I never thought much about it other than I thought they were wrong and I was right!
Remembering back to the time when I first discovered that I was hard of hearing, I had to work with the new technology then - analog hearing aids and lip reading. Then it was onto digital hearing aids and HAT (assistive listening devices) like my FM system. Ugh. Then I moved on to my iPhone and the Resound hearing aids that I discovered had the t-coil in it and became a promoter of the Induction Hearing loop. It was in 2006, when I participate in a state conference when I was introduced to what it could do for hearing loss people. I could hear on the cell phone. I could hear in a 'looped' room or auditorium or even in a place of worship. I cried for the first time when I could hear EVERYTHING for the first time in my life when in the 'loop.' It changed my life from that day on.
I was a leader in the HLAA/Chapter/State Board world and took it on as a mantel - that if I could tell anyone and everyone about the loop, I would, and I did. I worked on it at the local level as well as the state level. I even put on a state conference which helped to spread the work both by mouth as well as by social media. It was promoted at the National HLAA level then and continues to this day. I presented my Looping conference at the National HLAA convention the following year. Since I walk and talk as a hard of hearing person, I take every opportunity to empower others to learn about how it is to live as a hard of hearing person. Everyone has some type of speed bump in their life. I have deck of them - hearing loss is only one card that I carry. While I may be disability, that hasn't stopped me from doing whatever I wanted to do in this life. I want more looping so I can hear and others can hear too!
There is too much out there to just sit and sulk....just look at the past history and see what other people who have had difficulties and in their lives - see what discoveries have been done or what mountains have been climbed. Anything can be achieved. Not time for dwelling on the past...that is gone. Today matters because tomorrow is coming. Get going.... !!!!

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@nurseheadakes That was very motivating. I hope to get to meet you at the convention.
Mike Miles

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