This comes across to me as a control issue as much or more than about the HAs. And as AlleyCat asked how about telling us why you do this?
How do i explain i don't want my hearing aids?
- Thread starter Evie Yancey
- Start date
This comes across to me as a control issue as much or more than about the HAs. And as AlleyCat asked how about telling us why you do this?
Tetracyclone
Active Member
She already did so very clearly. Try reading the whole thread.
Evie Yancey
New Member
Out-of-order-
Phew! You are a bright young woman- despite being hearing-impaired you write clearly and well. My first devices were analog and I hated them for all the same reasons you dislike yours. You can't pick individual voices out of the background noise to make sense of conversation. The aids are useful one-on-one in a quiet place and that is about it. I'm shocked your audiologist has not explained this clearly to your mother. The problems are technical, not emotional, and it was a very smart move to come on this forum and ask advice. Do you have any classes at school that would let you study the technical reasons hearing aids sometimes don't help?
(I think the system your teachers use is the hearing loop (http://www.hearingloop.org/)).
Your autoimmune disease puts a spin on your situation that complicates things for everyone. I imagine your mom has been deeply worried for you a long time and that the burden of health care costs on your family makes all of you quite nervous about expenses. Your move toward taking charge of this entire issue is going to be a big win for the whole family.
Finally, cuz sometimes I talk too much, check this thread about migraines and hearing;
http://www.alldeaf.com/threads/interesting-question.129266/#post-2510785
Don't let is scare you since the 2 are linked for only some people, but do tell your autoimmune doc you think the devices bring on migraines sometimes. See what s/he says. I am not prone to migraines but sometimes I get headaches because the ear molds irritate me.
THIS IS A JOB FOR SCIENCE!oh wait, I said that already...
The problem is that I don't have an autoimmune disease, I have an auto-inflammatory immune disease, which is much rarer, and harder to treat. Symptoms are usually more intense and side effects tend to be more threatening when it comes to children in changing environments. As for school, I live in a very close-minded area, where it took years to even allow the ASL classes, which I think is stupid, but I can't change that. The most that I can do about my studies in the technical advantages and disadvantages would be if I did on my own, which I have been for a while. Thank you so much for the link if you want to look further into the auto-inflammatory immune disease this is the link to the page that the alliance made. I'm friends with the woman who made the site, her son has the same thing as me, but he doesn't have hearing aids because he hasn't lost much hearing. But if you are interested in anything weird and rare in the medical world, this should be a fun read.
http://autoinflammatory.org/nomid.php
Again thank you for taking time to answer and help me out. I also found my hearing aid, so I'm no longer in trouble
Kathy Baker
New Member
I'm 64 and I can't stand them. I had my first one in my twenties which was OK because I could hear better at school. When those broke I didn't have a way to get anymore until I was in my 40's. I couldn't understand a thing with that set. I got more in my 60's and they drive me crazy because I can't separate out the sounds. I do have a hearing dog that alerts me to the sounds I can't hear and she is amazing. I also have a PocketTalker that I can use in small spaces. Once you figure out how you hear, you can explain it to everybody. I wish you the best, Kathy
Boy, can I relate to this thread! I've been trying to get along with hearing aids since the age of 16 ... and I have just turned 52. They are frustrating, delicate, and very expensive little beasties. And they physically hurt my ears, so I tend to wear them occasionally and sparingly.
Yes, it takes a long time to explain to non-hearing-aid wearers that they are NOT as easy to fit and easy to wear as a pair of glasses. And my friends and family know that they CAN sometimes help when I wear them -- and that I sometimes do better withOUT them in. Depends on all kinds of circumstances.
I'm a huge fan of assistive-listening devices such as the Loop in auditoriums, the PocketTalker mentioned above, CART live transcriptions ... and things such as CART and open captions benefit many people such as me, so it's easy to present an option such as that to people, to counterbalance the fact that I'm being a "bad girl" for not wearing those hearing aids!
Also, since nobody else has pointed it out, NOT every person with hearing loss is a viable candidate for a cochlear implant. It would be massively inappropriate for me, for example, because although my hearing is minimal in some frequency ranges, I have a lot of almost-normal hearing in others.
More power to you, Evie, and hang in there! Yes, do take care of those pricey machines which your parents ponied up for, but remember, that it's up to each Deafie (any disabled person as a matter of fact) to decide for themself which devices, tactics, etc are the most useful to them ... and which ones are not. And make friends with your audiologist, and try getting those machines adjusted from time to time. You never know when something might come down the pike that just might work better (if not perfect) than what you've got.
Yes, it takes a long time to explain to non-hearing-aid wearers that they are NOT as easy to fit and easy to wear as a pair of glasses. And my friends and family know that they CAN sometimes help when I wear them -- and that I sometimes do better withOUT them in. Depends on all kinds of circumstances.
I'm a huge fan of assistive-listening devices such as the Loop in auditoriums, the PocketTalker mentioned above, CART live transcriptions ... and things such as CART and open captions benefit many people such as me, so it's easy to present an option such as that to people, to counterbalance the fact that I'm being a "bad girl" for not wearing those hearing aids!
Also, since nobody else has pointed it out, NOT every person with hearing loss is a viable candidate for a cochlear implant. It would be massively inappropriate for me, for example, because although my hearing is minimal in some frequency ranges, I have a lot of almost-normal hearing in others.
More power to you, Evie, and hang in there! Yes, do take care of those pricey machines which your parents ponied up for, but remember, that it's up to each Deafie (any disabled person as a matter of fact) to decide for themself which devices, tactics, etc are the most useful to them ... and which ones are not. And make friends with your audiologist, and try getting those machines adjusted from time to time. You never know when something might come down the pike that just might work better (if not perfect) than what you've got.
So the OP thinks she's got a problem! Well let me tell you this young lady. Yes, I lose my hearing aids too and over the past 6 years, I have lost 2. BUT I HAVE ALSO THROWN ANOTHER THREE AWAY AND BEEN UNABLE TO RETRIEVE THEM! How stupid is that? Not so stupid as one might first think. On another thread, I have been discussing the fact that wearing my hearing aids causes me to retch violently and when I feel this retching coming on, my first thought is to get the the aids out and more times than not I just snatch them out and throw them away from me. And sometimes I throw them where retrieval is impossible e.g.into the river. Try as I might, I just cannot stop this throwing away reaction probably because I am aware that the imminent retching will be so violent. All that said, I am very lucky because here in the U.K., under our National Health Service, hearing aids are supplied and even replaced, F.O.C.
Now regarding your own situation, while you have been given lots of good advice here on how to minimise the losing of your hearing aids, let me just remind you, that you, just like all the of the other contributors here, are human, and that humans like you and me and most other people, lose things. It's only human!
Now regarding your own situation, while you have been given lots of good advice here on how to minimise the losing of your hearing aids, let me just remind you, that you, just like all the of the other contributors here, are human, and that humans like you and me and most other people, lose things. It's only human!
Tetracyclone
Active Member
Evie-
I see on your profile you check in now and then, though not since April
Still, this may be useful to others. There is a video that shows hearing people what hearing loss actually sounds like to us. Unfortunately it is available only on Facebook, where you must have an account to use it. Here is the URLSame
x1heavy
Active Member
I don't lose hearing aids after I grew up in life. Thats a childhood thing. Expensive back then. (In the late 60's and 70's at Johns Hopkins...) However I do have them destroyed in work a few times and it's no problem having them replaced with new molds and more money. If they are not destroyed they usually got rebuilt at the lab at the 10 year mark (*In ear) and good for another 5 to 10 depending on mold.
However I ordered a pair about a year ago and found that prices have changed along with the old makers going out of business. So it's 1200 dollars for two. My last set 15 years before that was the first digitals in ear for 3200 and they were very good. Now to get similar power and quality is about 6000 for two plus tax etc. I just stayed with your basic digital and telecoil. It will shut off during artillery shoot and do music fairly well but thats all they are for. No blue tooth and any of that stuff. Part of the hearing aids I needed to have power to boost enough Db to hear at DOT medical hearing minimums, I think 500, 1000 and 2000 hertz at 40db to you and a forced whisper question behind your back. (Make sure thats not a crowded employers room with many people talking...) Since I am not on the road anymore I am not concerned very much with big power.
As far as Cochlear, Some parents "Install" the thing into the baby or young child without thinking to ask that person if they have no trouble being deaf. If God made you deaf, you don't know that you cannot hear. Only that others tell you to do this or that etc. Or like parents just have it done without asking you at all. When you reach a certain age you have the right to say "No." and generally in medicine no equals no to do surgery anyway against your wishes equals assault at a minimum. Most doctors respect someone saying no. Not everyone is going to take cochlear.
Its really important that if you don't want CI no one can make you get it. You have to be very clear on that. Older Teens from time to time had to become emancipated from Parents as a form of defense against having something done against his or her wishes. Legal problems come up involving minor children not yet at adult age (Usually 18 or 21, some are 16 etc)
From what I understand they have to drill a plug out of your skull to install the CI and its pretty big surgery. After you have that done, you run various risks. Personally I wont do it. If the ears get deaf and don't use hearing aids at all? No problem. I have experimented with disposible 20 dollar hearing aids from walmart which was matching my hearing chart and worked for me generally but they are not hearing aids. They boost sound a little bit and do not work for some HI or HOH depending on their hearing chart. And generally are crappy compared to prescribed digital in ear hearing aids. The disposibles burn out in about a year to four years depending. They are so cheap you just throw it away and get another. I like to use them when I am engaged in a physical activity to keep the "Good" hearing aids safe at home. So If was thrown from the horse onto my head smashing the cheap ones then its not a problem. As it might be for the more expensive ones which will need replacing at my cost retail.
However I ordered a pair about a year ago and found that prices have changed along with the old makers going out of business. So it's 1200 dollars for two. My last set 15 years before that was the first digitals in ear for 3200 and they were very good. Now to get similar power and quality is about 6000 for two plus tax etc. I just stayed with your basic digital and telecoil. It will shut off during artillery shoot and do music fairly well but thats all they are for. No blue tooth and any of that stuff. Part of the hearing aids I needed to have power to boost enough Db to hear at DOT medical hearing minimums, I think 500, 1000 and 2000 hertz at 40db to you and a forced whisper question behind your back. (Make sure thats not a crowded employers room with many people talking...) Since I am not on the road anymore I am not concerned very much with big power.
As far as Cochlear, Some parents "Install" the thing into the baby or young child without thinking to ask that person if they have no trouble being deaf. If God made you deaf, you don't know that you cannot hear. Only that others tell you to do this or that etc. Or like parents just have it done without asking you at all. When you reach a certain age you have the right to say "No." and generally in medicine no equals no to do surgery anyway against your wishes equals assault at a minimum. Most doctors respect someone saying no. Not everyone is going to take cochlear.
Its really important that if you don't want CI no one can make you get it. You have to be very clear on that. Older Teens from time to time had to become emancipated from Parents as a form of defense against having something done against his or her wishes. Legal problems come up involving minor children not yet at adult age (Usually 18 or 21, some are 16 etc)
From what I understand they have to drill a plug out of your skull to install the CI and its pretty big surgery. After you have that done, you run various risks. Personally I wont do it. If the ears get deaf and don't use hearing aids at all? No problem. I have experimented with disposible 20 dollar hearing aids from walmart which was matching my hearing chart and worked for me generally but they are not hearing aids. They boost sound a little bit and do not work for some HI or HOH depending on their hearing chart. And generally are crappy compared to prescribed digital in ear hearing aids. The disposibles burn out in about a year to four years depending. They are so cheap you just throw it away and get another. I like to use them when I am engaged in a physical activity to keep the "Good" hearing aids safe at home. So If was thrown from the horse onto my head smashing the cheap ones then its not a problem. As it might be for the more expensive ones which will need replacing at my cost retail.
malus handle
Member
Yes, and check out "The Makhaila Peterson Podcast", where she talks to her Dad, Dr. Jordan Peterson, about their lifelong Auto-Immune disorders. m.youtube.com/watch?v=HLWgVpmo1e0. Dr. Peterson and his daughter have delved deep into this issue, and I've found great comfort listening to them speak. Jordan Peterson has been a wealth of information on many different subjects.
I had a hearing aid for about a year, but gave it up after a friend suggested that I get a "wireless bone conduction headphones", and pair it up to my Kindle Fire with an Equalizer FX, and experiment with "listening", outside of the ear canal. I wear my headphones every day, and can listen hands free (very important I think) to anything I want, music, pod-casts, teaching aids, my wife calling me to remind me of something, etc. I sometimes also wear a foam earplug with the bone phone, and it's amazing how vibrant and clear the tones are. I also paired up my Samsung phone so that's instant communication
Since I've been using this "set up", my communication skills have much improved, my Tinnitus subsides because I'm calmer, and my vertigo also seems to subside while I'm dancing to my own beat, not something that has to be programed by a doctor forever after. And I can take it off when ever I want and program it myself for no cost. Total cost for the bone phone and the Kindle was $115. Everybody should check these things out as a "starter kit" for their future. Me, I will not have surgery or a hearing aid, and I will keep it simple and comfortable.
I only have one ear, so I don't know how this would relate to a person who has a little hearing in both ears, but I hope this helps give you an alternative.
I enjoy my music so much now, and I really do communicate better, because of that. It helps keep the "noise" down. Good music is much better than "anti-noise". One of My favorites is "Eye in The Sky" by the Alan Parsons Project. enjoy.
I had a hearing aid for about a year, but gave it up after a friend suggested that I get a "wireless bone conduction headphones", and pair it up to my Kindle Fire with an Equalizer FX, and experiment with "listening", outside of the ear canal. I wear my headphones every day, and can listen hands free (very important I think) to anything I want, music, pod-casts, teaching aids, my wife calling me to remind me of something, etc. I sometimes also wear a foam earplug with the bone phone, and it's amazing how vibrant and clear the tones are. I also paired up my Samsung phone so that's instant communication
Since I've been using this "set up", my communication skills have much improved, my Tinnitus subsides because I'm calmer, and my vertigo also seems to subside while I'm dancing to my own beat, not something that has to be programed by a doctor forever after. And I can take it off when ever I want and program it myself for no cost. Total cost for the bone phone and the Kindle was $115. Everybody should check these things out as a "starter kit" for their future. Me, I will not have surgery or a hearing aid, and I will keep it simple and comfortable.
I only have one ear, so I don't know how this would relate to a person who has a little hearing in both ears, but I hope this helps give you an alternative.
I enjoy my music so much now, and I really do communicate better, because of that. It helps keep the "noise" down. Good music is much better than "anti-noise". One of My favorites is "Eye in The Sky" by the Alan Parsons Project. enjoy.
stephaniep
Active Member
But the thing is, it sounds like you still get hearing benefit from the bone conduction headphones, which is nice of course, I use to use anything I could before I got my hearing Aids, then stronger and stronger ones They made moulds for the last ones, and I still cannot make out speech? I hope your hearing level will stay and not get worse. In the meantime, enjoy the music, I wish you the best?
marabmia
New Member
I have moderate hearing loss. I know that many people don't want to wear hearing aids, but I bought one that is worn completely in the canal (I was suggested by an audiologist). I should say, it is easy to find and choose hearing aid supplies online (I buy all the necessary stuff at a hearing aid shop). Yes, I had to get used to it, but I feel confident, and in most cases, people don't even notice it.
x1heavy
Active Member
I do not do well in in canal hearing aids. They simply do not have enough power for me. One of the hallmarks of my hearing is that I require a enormous amount of power. In the old days really big mercury batteries then later Zinc Air. Problems improved when they changed from Analog to Digital and apparently are sliding back a little bit again like they did in the bad old 70's
I do not like those who advertise hearing boosters or hearing aids to those who feel embarrassed to have them in ear for the world to see. Thats not good preying on people's complexes for a sale or three. One of my girlfriends growing up in life had legs that required special braces to force them to approximately a normal human walking but she had to endure much teasing for years because she needed more space with the metal steel while walking than most of us in line with her. It was disruptive. In fullness of time she grew into a young adult female with proper legs so it was worth it for her to have had them growing up to meet and fix a medical problem with the legs. I remember her as being very smart and considered her my equal in that way. Better than me in some subjects.
What I refuse to do is comply with people if they demand I wear a hearing aid or not. There is a note pad and pen. Start writing. I have several medical problems that worsen over time when I wear hearing aids too long. But thankfully do not have to run the mountains anymore or do much flying which really hurts the ears. (They cannot drain as well in later age)
Ive always had a spot in my heart for those who are not free mentally or medically. Columbia had a section of the school keeping about 100 children in my time seperate from society because they were not adequate IQ for normal school due to brain damage and other issues physically and medically. Many required devices such as helmets and so on. I doubt they worried very much what people thought of them when they were bused to the roller rink for a afternoon trip away. We just did not worry about stuff like that.
Fast forward to today, 30 years after wars fighting terrorists, we come back and fit with new legs, arms, hands and god knows what else in terms of plates, shields and so on. Medical stuff has become almost a miracle but you cannot be embarrased about them. Why would they? Some actually reenlisted and are back in the wars again. Which I think is pretty awesome against our enemies who do not understand whats possible here in America. I myself had several new parts put into my body in the last 10 years and the difference is that I live free. Not trapped in some nursing home being told to drink the orange juice and hurry up.
I do not like those who advertise hearing boosters or hearing aids to those who feel embarrassed to have them in ear for the world to see. Thats not good preying on people's complexes for a sale or three. One of my girlfriends growing up in life had legs that required special braces to force them to approximately a normal human walking but she had to endure much teasing for years because she needed more space with the metal steel while walking than most of us in line with her. It was disruptive. In fullness of time she grew into a young adult female with proper legs so it was worth it for her to have had them growing up to meet and fix a medical problem with the legs. I remember her as being very smart and considered her my equal in that way. Better than me in some subjects.
What I refuse to do is comply with people if they demand I wear a hearing aid or not. There is a note pad and pen. Start writing. I have several medical problems that worsen over time when I wear hearing aids too long. But thankfully do not have to run the mountains anymore or do much flying which really hurts the ears. (They cannot drain as well in later age)
Ive always had a spot in my heart for those who are not free mentally or medically. Columbia had a section of the school keeping about 100 children in my time seperate from society because they were not adequate IQ for normal school due to brain damage and other issues physically and medically. Many required devices such as helmets and so on. I doubt they worried very much what people thought of them when they were bused to the roller rink for a afternoon trip away. We just did not worry about stuff like that.
Fast forward to today, 30 years after wars fighting terrorists, we come back and fit with new legs, arms, hands and god knows what else in terms of plates, shields and so on. Medical stuff has become almost a miracle but you cannot be embarrased about them. Why would they? Some actually reenlisted and are back in the wars again. Which I think is pretty awesome against our enemies who do not understand whats possible here in America. I myself had several new parts put into my body in the last 10 years and the difference is that I live free. Not trapped in some nursing home being told to drink the orange juice and hurry up.
I have Ménière’s disease which for me causes distorted hearing. Pure amplification doesn’t help. The best descriptor I’ve found are “everyone sounds like Charlie Browns teacher” or “it’s like trying to listen to someone three doors down”. Yeah the amplification level may be kinda ok but it’s garbage. I now have a cochlear implant in one ear and it’s better than a hearing aid but not by much. Truth is I may have waited too long to get it. Nonetheless it seems to get better over time.
As for losing any device I’m with you. Lost two cochlear processors. Have talked to the manufacturing reps asking for some type of Reward if found 800 number to be engraved on it to no avail. I was fed up and asked a friend to laser engrave it with my number. The laser must be set to a very low power so not to compromise the device. Good luck.