How does hearing loss change you?

Posted by joangela @joangela, Sat, May 11 7:59am

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?

@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. 😁

REPLY

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?

Jump to this post

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…. !!!!

REPLY
@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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I am an hearing impaired Muggle born with the loss but misdiagnosed until 16 as Asphasic and Mentelly challenged. I have fought many battles and won in spite of professional s before and after correct diagnosis. Stating I will never graduate from college or have a good job. I did both … graduated from San Francisco state in Psy … and had some self made jobs – in the hearing world and profffesionsls were shocked ( Audiologists/ proffessors.. etc. . More folks in my life say I cannot and in spite a lot of self esteem issues and lack of confidence that I fight all the time- I do / can do in spite of them.
Before cellphones; t coils allowed me to be more okay in the hearing world. Nowadays; no- although the InnoCaption helps- not enough. I have taught Audiologists and other folks that t coils acts like an fm receiver for me- better to hear tv if there is no captioning availabl or music iPod . The loop in some train stations and t coil have smooth things out for me. My big issue in life is to make medical offices more in time to hearing impaired. MuLe n Care has done some good work in that but they still need some work. They still call and I messaged the office stating no. They will work with me … with reminders sometimes.
We need 911 to be text friendly. Not yet in most states and that’s is not good. Scary
My hearing loss has worsened and it is making things more difficult. But critters and books helps a lot.
Sorry for long bit.

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@bookysue

I am an hearing impaired Muggle born with the loss but misdiagnosed until 16 as Asphasic and Mentelly challenged. I have fought many battles and won in spite of professional s before and after correct diagnosis. Stating I will never graduate from college or have a good job. I did both … graduated from San Francisco state in Psy … and had some self made jobs – in the hearing world and profffesionsls were shocked ( Audiologists/ proffessors.. etc. . More folks in my life say I cannot and in spite a lot of self esteem issues and lack of confidence that I fight all the time- I do / can do in spite of them.
Before cellphones; t coils allowed me to be more okay in the hearing world. Nowadays; no- although the InnoCaption helps- not enough. I have taught Audiologists and other folks that t coils acts like an fm receiver for me- better to hear tv if there is no captioning availabl or music iPod . The loop in some train stations and t coil have smooth things out for me. My big issue in life is to make medical offices more in time to hearing impaired. MuLe n Care has done some good work in that but they still need some work. They still call and I messaged the office stating no. They will work with me … with reminders sometimes.
We need 911 to be text friendly. Not yet in most states and that’s is not good. Scary
My hearing loss has worsened and it is making things more difficult. But critters and books helps a lot.
Sorry for long bit.

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@bookysue I was glad to read your post You are very courageous and spunky good for you don't let others beat you down ,sounds like you don't 🙂

Liked by bookysue

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I tried not to let things get me down as it is getting harder. It does not help that I am an depressive Deefie( misspell on purpose- having some hearing) There was a science report how important it is to be out there – that hearing issues needs to be resolved or serious consequences will happen . Someday better coverage for hearing aids in Medicare , etc

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@bookysue

I tried not to let things get me down as it is getting harder. It does not help that I am an depressive Deefie( misspell on purpose- having some hearing) There was a science report how important it is to be out there – that hearing issues needs to be resolved or serious consequences will happen . Someday better coverage for hearing aids in Medicare , etc

Jump to this post

@bookysue I wear hearing aids but also have tinnitus the tinnitus bothers me more then heading clearly but I have Phonek and can adjust them to outside noises .Good luck in your quest

Liked by bookysue

REPLY

Thank you all for your responses and feedback. Understand the ups and downs of hearing loss & tinnitus that doesn't go away even with the fancy programs that I have, biofeedback and sound devices that I tried…it's a fact of life that I will live with these two misfunctionings of the brain until I die. My past history has multiple reasons for these results and so I will just live with them and march on in life. But, as I said, I will learn to live with them by using different ways to augment my life around them. AND I will work with others to help me do that.
I would love to attend the next HLAA National Convention in Rochester NY but my husband and I just moved to FL from WI. A BIG move that has me very busy just trying to get myself use to a new neighborhood. My husband is helping me but after living in one place for some 45 years….its an adjustment.
My HLAA Work in WI has been completed and now my work in FL is just beginning. But first my house and doctors and getting me set up for the next chapter in my life. We live in a 55+ community where there are many hard of hearing people – so guess what? There will be plenty to do. But first, one step at a time.
One thing I can say, is if there is anything you can do for yourself – that is learn about your self and your health. What type of hearing loss do you have? Do you have noise in your head (tinnitus)? Do you have difficulty with hearing sounds that get louder and louder called hypercusis like I do? Do you have a balance problem or vertigo, like I do? When does that happen? Have you had physical therapy? What type of testing have your had for your hearing loss? Have your seen both a ENT (ear, nose and throat) doctor and an audiologist for a complete checkup? Do you have them on a regular basis?

Are you treating your hearing loss like a yearly or even biannual physical since this should be something done on a regular basis? If not, then this might be one reason our health care providers neglect to address these issues. I know, because I am a retired RN and this was NOT taught in our nursing schools.
I learned it on my own. Our HLAA website provides plenty of information to help ground you in plain and simple information that can help to give you ammunition to make sure you are ready for your appointments, urgent care visits, hospital visits, emergency room visits or anything in between. Talking to your healthcare providers about your hearing loss is just like talking to your neighbors or family. THEY need to know since they are taking care of you.
They need to know how to communicate with you – what works and what doesn't work.
I have a letter that I give to my doctors that specifically spells out what I expect of me and what I expect of them when I see them. They always make sure to follow and work with me since I am a high-risk patient. You tell them that…my life is in their hands. Especially in surgery and I have had my share.
https://www.hearingloss.org/
Last item….Medicare and coverage issues. I write to all of my legislators and governors and even the President. I have written to Congress and other governing bodies about healthcare issues that directly and indirectly affect you and I. I have not yet been called to sit before any of the panels but I have had my written materials submitted in Washington DC. I have been working on the issue of having Medicare cover Hearing aids and at this time – it will not be done for various reasons. The closest we have right now is the FDA approved for Over the Counter Hearing Aids Act that gets it nearer to what we could have but not quite. While it's better than nothing – its not exactly what we need. There are so many other 'big issue' bill on the table that the HA Act is usually gathering dust. http://www.hearingreview.com/2017/08/president-trump-signs-otc-hearing-aid-legislation-law/
I had been working with Honorable Sensenbrenner to get a bill passed from both houses to pay for HAs every 5 years and each year it never got passed the Senate. We worked on it for four years. And now I am in FL. So…Who knows.

That's all for now. Everyone can join our HLAA Organization – it's a terrific place to find out what I have been giving you – find Chapters or people who share the same insights, thoughts, supporting arms and hugs and know there may not be answers but are willing to 'listen' and work alongside you as others have for me. It took me 7 years to accept my hearing loss and to agree that I needed help – support and to speak up about it. I was angry but soon found that I could turn that around and do something about it. It didn't happen over night as most things don't but in the end – word does get around in mysterious ways. I planted the seed and it grew… and you all are going to do the same. IT DOES WORK.

REPLY
@nurseheadakes

Thank you all for your responses and feedback. Understand the ups and downs of hearing loss & tinnitus that doesn't go away even with the fancy programs that I have, biofeedback and sound devices that I tried…it's a fact of life that I will live with these two misfunctionings of the brain until I die. My past history has multiple reasons for these results and so I will just live with them and march on in life. But, as I said, I will learn to live with them by using different ways to augment my life around them. AND I will work with others to help me do that.
I would love to attend the next HLAA National Convention in Rochester NY but my husband and I just moved to FL from WI. A BIG move that has me very busy just trying to get myself use to a new neighborhood. My husband is helping me but after living in one place for some 45 years….its an adjustment.
My HLAA Work in WI has been completed and now my work in FL is just beginning. But first my house and doctors and getting me set up for the next chapter in my life. We live in a 55+ community where there are many hard of hearing people – so guess what? There will be plenty to do. But first, one step at a time.
One thing I can say, is if there is anything you can do for yourself – that is learn about your self and your health. What type of hearing loss do you have? Do you have noise in your head (tinnitus)? Do you have difficulty with hearing sounds that get louder and louder called hypercusis like I do? Do you have a balance problem or vertigo, like I do? When does that happen? Have you had physical therapy? What type of testing have your had for your hearing loss? Have your seen both a ENT (ear, nose and throat) doctor and an audiologist for a complete checkup? Do you have them on a regular basis?

Are you treating your hearing loss like a yearly or even biannual physical since this should be something done on a regular basis? If not, then this might be one reason our health care providers neglect to address these issues. I know, because I am a retired RN and this was NOT taught in our nursing schools.
I learned it on my own. Our HLAA website provides plenty of information to help ground you in plain and simple information that can help to give you ammunition to make sure you are ready for your appointments, urgent care visits, hospital visits, emergency room visits or anything in between. Talking to your healthcare providers about your hearing loss is just like talking to your neighbors or family. THEY need to know since they are taking care of you.
They need to know how to communicate with you – what works and what doesn't work.
I have a letter that I give to my doctors that specifically spells out what I expect of me and what I expect of them when I see them. They always make sure to follow and work with me since I am a high-risk patient. You tell them that…my life is in their hands. Especially in surgery and I have had my share.
https://www.hearingloss.org/
Last item….Medicare and coverage issues. I write to all of my legislators and governors and even the President. I have written to Congress and other governing bodies about healthcare issues that directly and indirectly affect you and I. I have not yet been called to sit before any of the panels but I have had my written materials submitted in Washington DC. I have been working on the issue of having Medicare cover Hearing aids and at this time – it will not be done for various reasons. The closest we have right now is the FDA approved for Over the Counter Hearing Aids Act that gets it nearer to what we could have but not quite. While it's better than nothing – its not exactly what we need. There are so many other 'big issue' bill on the table that the HA Act is usually gathering dust. http://www.hearingreview.com/2017/08/president-trump-signs-otc-hearing-aid-legislation-law/
I had been working with Honorable Sensenbrenner to get a bill passed from both houses to pay for HAs every 5 years and each year it never got passed the Senate. We worked on it for four years. And now I am in FL. So…Who knows.

That's all for now. Everyone can join our HLAA Organization – it's a terrific place to find out what I have been giving you – find Chapters or people who share the same insights, thoughts, supporting arms and hugs and know there may not be answers but are willing to 'listen' and work alongside you as others have for me. It took me 7 years to accept my hearing loss and to agree that I needed help – support and to speak up about it. I was angry but soon found that I could turn that around and do something about it. It didn't happen over night as most things don't but in the end – word does get around in mysterious ways. I planted the seed and it grew… and you all are going to do the same. IT DOES WORK.

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@nurseheadakes
You mentioned your in a community in Fla. Is it in Northern Fla cant think of the name of it A friend from Pa use to winter down there they call them snowbirds coming down .I moved 2 times first after husband died had 10 room house we used all of them basement and attic that was a job then my mobile home to move to California I'm in a 62 and up building

Liked by bookysue

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@lioness

@bookysue I wear hearing aids but also have tinnitus the tinnitus bothers me more then heading clearly but I have Phonek and can adjust them to outside noises .Good luck in your quest

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Weird a number of folks including myself. Mind you, I was born with this; always took aids out to read in quiwt( drive audiologist nuts- says it’s a no no- I do not like no no’s) never a consequence until the last few years. I now have “tin…. and for me it is resolved by keeping aids in. Still do not… FYI. See if that helps- there is more success with tin. Help – please check online as much as possible – always in any issue be as information gathering on your own on any issue . It saved my life last year.

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@nurseheadakes

Thank you all for your responses and feedback. Understand the ups and downs of hearing loss & tinnitus that doesn't go away even with the fancy programs that I have, biofeedback and sound devices that I tried…it's a fact of life that I will live with these two misfunctionings of the brain until I die. My past history has multiple reasons for these results and so I will just live with them and march on in life. But, as I said, I will learn to live with them by using different ways to augment my life around them. AND I will work with others to help me do that.
I would love to attend the next HLAA National Convention in Rochester NY but my husband and I just moved to FL from WI. A BIG move that has me very busy just trying to get myself use to a new neighborhood. My husband is helping me but after living in one place for some 45 years….its an adjustment.
My HLAA Work in WI has been completed and now my work in FL is just beginning. But first my house and doctors and getting me set up for the next chapter in my life. We live in a 55+ community where there are many hard of hearing people – so guess what? There will be plenty to do. But first, one step at a time.
One thing I can say, is if there is anything you can do for yourself – that is learn about your self and your health. What type of hearing loss do you have? Do you have noise in your head (tinnitus)? Do you have difficulty with hearing sounds that get louder and louder called hypercusis like I do? Do you have a balance problem or vertigo, like I do? When does that happen? Have you had physical therapy? What type of testing have your had for your hearing loss? Have your seen both a ENT (ear, nose and throat) doctor and an audiologist for a complete checkup? Do you have them on a regular basis?

Are you treating your hearing loss like a yearly or even biannual physical since this should be something done on a regular basis? If not, then this might be one reason our health care providers neglect to address these issues. I know, because I am a retired RN and this was NOT taught in our nursing schools.
I learned it on my own. Our HLAA website provides plenty of information to help ground you in plain and simple information that can help to give you ammunition to make sure you are ready for your appointments, urgent care visits, hospital visits, emergency room visits or anything in between. Talking to your healthcare providers about your hearing loss is just like talking to your neighbors or family. THEY need to know since they are taking care of you.
They need to know how to communicate with you – what works and what doesn't work.
I have a letter that I give to my doctors that specifically spells out what I expect of me and what I expect of them when I see them. They always make sure to follow and work with me since I am a high-risk patient. You tell them that…my life is in their hands. Especially in surgery and I have had my share.
https://www.hearingloss.org/
Last item….Medicare and coverage issues. I write to all of my legislators and governors and even the President. I have written to Congress and other governing bodies about healthcare issues that directly and indirectly affect you and I. I have not yet been called to sit before any of the panels but I have had my written materials submitted in Washington DC. I have been working on the issue of having Medicare cover Hearing aids and at this time – it will not be done for various reasons. The closest we have right now is the FDA approved for Over the Counter Hearing Aids Act that gets it nearer to what we could have but not quite. While it's better than nothing – its not exactly what we need. There are so many other 'big issue' bill on the table that the HA Act is usually gathering dust. http://www.hearingreview.com/2017/08/president-trump-signs-otc-hearing-aid-legislation-law/
I had been working with Honorable Sensenbrenner to get a bill passed from both houses to pay for HAs every 5 years and each year it never got passed the Senate. We worked on it for four years. And now I am in FL. So…Who knows.

That's all for now. Everyone can join our HLAA Organization – it's a terrific place to find out what I have been giving you – find Chapters or people who share the same insights, thoughts, supporting arms and hugs and know there may not be answers but are willing to 'listen' and work alongside you as others have for me. It took me 7 years to accept my hearing loss and to agree that I needed help – support and to speak up about it. I was angry but soon found that I could turn that around and do something about it. It didn't happen over night as most things don't but in the end – word does get around in mysterious ways. I planted the seed and it grew… and you all are going to do the same. IT DOES WORK.

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Thankful Nurse Headshskes- Wow thank you so much for what you do. The letter spelling out what your needs with the docs other than me verbalizing/ reminding them even it is in the chart. That is an awesome idea that any person with a hearing loss should do. my Penn Care has done an awesome job but they do forget at times.
This will perhaps be my last convention-expenses are getting up there for me. This will be my 3 rd year .
I have 15 yest old hearing aids- I brought Nano aids last year as to be my backup. They do help. Closest aids to be a good higher than mild loss. ( most are for mild loss) I was amazed. I even spoke about them at the Philly chapter .
I hope you go to the convention- has a good research talk and I would like to meet you.
I am pushing advocating better commutation between docs and patients. I am also trying in a small way to get 911 to be done text style
We have come s long way with loops but Philly is not up there
We have a better captioning system in movie theatres . Other theatres needs some work. I will be helping someone in Philly on that . Weird and absurd placement of open captions I Arden, etc
We are far better than the UK .wow what issues they have there
Take care all. Poodle Dylan needs me to play .

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How timely @bookysue! This is brief info regarding upcoming Augmented Reality/Smart Glasses in the Phila area.
"In partnership with the Institute on Disabilities at Temple University and the National Theatre, London, People’s Light is embarking on a project that will revolutionize arts accessibility for the Deaf and hearing loss communities. By integrating Augmented Reality/Smart Glasses technology with a new voice following algorithm developed by the National Theatre, London, we will provide theaters with real-time captioning for live performances. Lightweight and customizable, our smart glasses will enable people who are Deaf or experience hearing loss to enjoy live performance on their own terms and in the company of their friends, family members and neighbors.
Our pilot testing of this remarkable new system will begin in the Fall of 2019.

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@bookysue

Weird a number of folks including myself. Mind you, I was born with this; always took aids out to read in quiwt( drive audiologist nuts- says it’s a no no- I do not like no no’s) never a consequence until the last few years. I now have “tin…. and for me it is resolved by keeping aids in. Still do not… FYI. See if that helps- there is more success with tin. Help – please check online as much as possible – always in any issue be as information gathering on your own on any issue . It saved my life last year.

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@bookysue Good morning yes I do a lot of research online it's a great tool to use .This is what I found too for tinnitus keeping h.a. In Happy Memorial Day . It's sunny today yes after the rainy,col day yesterday

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