Category: Hear No Evil - See No Evil
How many of us are totally blind and legally deaf? Don't be shy. Let's talk. We have something in common, and can share ideas along the way.
Hey dude, you know I am already. There's Scott KC8PNL who is also blind and parshey deaf as well. I don't know of any others.
I know of a few others, and will be really happy to hear from them on the board. There are more of us than you might think.
ah cool. wonder who they are myself.
John
Ah! well, I'm one of those others, lmfao. Partially deaf since birth though this wasn't really discovered let alone diagnosed till I was about 9 and I was constantly turning my head to one side so I could hear what people were saying, so mum finally cracked and we went all the way up to the ear nose and throat/chraneofacial unit at The Radcliffe Infirmary Oxford and kitted out with the first of probably around 6 different hearing aids I was to wear for the rest of my life. I started off with two NHS hearing aids, gave them both up as bad jobs, then went on to a succession of these disposable hearing aids from Boots, but it was rather wearing, having to wait for a new one to arrive, the previous ones having expired far too quickly for Boots sent you a new one every 30 days or so, so I gave them up as bad jobs. We then went to the local health centre which ran a hearing aid clinic every Wednesday and where they provided you with these behind the ear digital hearing aids. Well, not so digital. Bloody thing just squeaked at me from the moment I put it in to the moment I took it out, so I kind of lost the darn thing, partly by accident, partly on purpose and I've just paid in the region of $3000 (that's £1250) for the hearing aid I have now which fits right in to your ear, is moulded to the shape of your ear canal and it runs like a dream so I guess I'm sticking with it. Recent hearing tests have confirmed, left ear normal. Right ear - moderate hearing loss.
Jen.
mine cost 4500 US dollars each. I got a bit of help though, so only had to pay for one. It's amazing what we have to pay just to be half way functional.
I'm one. I am totally blind and deaf in the right ear. I'm losing the hearing in my left hear as well. before too long I'll be totally deafblind. Not something I'm looking forward to but so far no way to stop it. I can get an implant like the cochlear called the auditory brainstem implant but it won't be normal hearing still better than nothing though...I'll have to pay for it myself. 30,000 bucks. and I just don't have it. I was trying to raise it but haven't gotten very far. So I am still unsure as to what to do. I have to have the 30k up front, no payments. *shrugs*
Hey guys I'm hearing impaired as well, I have hearing in both ears, and don't wear hearing aids, but I'm looking into getting some becauseI'm noticing that I am having trouble hearing in some settings. I've been hearing impaired sense I was eight or nine and the doctors have no idea what the cause is, they have said it may be due to all my surgeries which now is a total of twenty six. I am also totally blind in my left I and I have 2700 vision in my right eye. My hearing is stable and has been sense I was told I am hearing impaired. I use to wear hearing aids when I was little, but they always made everything to loud for me, so I don't wear them anymore, but as I said earlier in this post I'm looking to get new ones that are more up to date. My hearing loss is more of not being able to hear the low tones and I can hear the high tones very well, which is very annoying.
Most of the time, there are organizations out there that can help you. Your doctor may know of a few.
I know of a couple more who haven't posted and rarely post on the boards. But it's not my place to name them. But I'll bet there are quite a few zoners with at least some hearing loss.
BTW, first time I've seen this board. Must be new. Good idea though.
mine cost$4000 for the aids. anolog programmable, behind-the-ear type.
Moderet to profound loss for me.
John
Hello all I have been hearing impareed for about ten years. got my first pairs of aids in fiveth grade now I am on the second pair that are in the ear kind. And I don't have to program them myself the coputer does that. But the reason behind my hearing lose is Alstroms, and genetic thing.
Oh wow! They make programmable analog? I was unaware of this. Mine have to be adjusted with a little tiny screwdriver. I can adjust it myself, but there's really no need to. Once it's set, it's set. It does have the standard volume wheel though, and it's the BTE type.
Yes I've talked ot every doctor that does the auditory brainstem implants, all of them say check with my local orginizations. I've done that and no one wants to help me. So, I have one more appointment with a new doctor in August...that's my last hope to try to get this done. I hope it all plays otu well.
First off, good luck Holly. Unfortunatley, at this time, there are no organizations that I'm aware of that can help you either. I will look in to this further, but beyond asking your local organizations which it seems like you have already done, there isn't much else I can recommend. I doubt, even if you have a case open with your state, that they would entirely fund such an expensive purchase, however, if they can agree to fund a portion of it, perhaps you could get several different organizations to fund part of this so that you can get the amount you need. Certainly not an easy thing to do I'll admit, but if you really need it, that's probably your best option. If you tell me what state you live in, since I'm currently working at an agency serving the deaf-blind, I may be able to do some research and asking around here. It's a national agency, so I'd immagine they would be aware of any such possibilities. At santhonyr: I don't believe they make digitally programmable analogue hearing aids anymore, I think those were phaised out around 2001 due to the new digital technology. It's unfortunate if this is indeed true, since I sort of miss the old analogue sound in certain situations. Even if you turn the processors off entirely, it still doesn't have that "hear everything quality" that I sort of miss.
Just a question. For those who are hearing impaired and have no usable vision, how are you using the pc? Refreshable braille or just turning up the speech and adjusting pitch and rate?
Some people use refreshable braille displays entirely, while others simply turn the speech up. And still others use a combination of both a screen reader and Braille display. The Braille display, in this case, is more there to support the listening and through redundency of information, the user can figure out what is being said. If at all possible, it's recommended by a lot of professionals in the field to use this method, since navigating a webpage is much more time consumming when solely using a display. Oh, and then there is the other side of things: people who are hearing and visually impaired. They may use screen magnification with a screen reader, or screen magnification with a Braille display. So to sum this entire post up in 1 sentence, it really depends on the individual.
I turn JAWS up and use headphones.
Jen.
I'm partially sighted--I can see light, dark, colors, shadows, outlines, and motion. I'm also profoundly deaf in both ears and have been since birth, but thanks to bilateral cochlear implants, I can hear very well. As for how I access a PC, I use headphones with my JAWS speech volume at 39%, rate at 15%, pitch at its default.
I have a friend by the name of Jake mcMahan. He's had severe hearing loss since the third grade, and thanks to his new hearing aids, his hearing is almost normal. Hearing aids may work for some, but not all. It depends on the indevidual. As for my friend, hearing aids work just fine.
Ah, now, I'm the difficult one. I have a 20 decibel loss in my left ear - for which they won't give me hearing aids I might add - and the right is normal. I also have obscure auditory dysfunction or auditory processing disorder depending on where you come from. Makes for mega hell in social situations, so most of the time I just don't go. My balance is a little one sided too and I can't detect two lots of traffic for toffee or tea. Sometimes everything gets up shit creak though because of stupid earwax which is my main problem at the moment. Luckily the hospital gave me a pocket talker for the APD, so I'm using that stuck to my waist to try and level off the sound while I deafen myself each morning with that ear cleaning shit and wait for my appointment for syringing on Thursday. gonna modify me a high powered hoover and just jam it right in there and suck! so anyways to the serious question, how do any of you with hearing impairments of significant proportions cope with travel. I mainly use taxis but I do mobility or "O and M" to familiarise me with the local area and this has become a problem.
Sorry for the rant.
Ezzie.
Travel isn't too difficult not being able to hear that well. Now if its fuckin with your balance like ine is, it's a bit harder. I pretty much just take my time, sometimes walking like a drunk, and just go by feel. When I come to a crossing i make sure and listen very hard and if its too noisy in the situation, I'd go when it was less busy, or find another route, unless my husband was walking with me. I guess that's another plus about guide dogs. If you think it's ok to cross and give the dog the "forward" command, and he doesn't go then you obviously know it wasn't clear like you thought.
I am wanting to know if any of people with balance problems and totally blind have figured out a way to use maybe a walker and a cane at the same time? I'm not that far yet, and hopefully I can fix this balance problem before it gets there, I am just wondering.
maybes if you got one of the forearm type they use for peeps with arthritis you could do both. as it is I've used one of the normal ones and they're great.
Not sure it'd be safe to use a walker and a cane, though I did just lean on one side more than the other to use my cane once. But I'd luv for someone to prove me wrong. Have you heard of a hoople though? They wer originally designed to teach kids cane technique. They're a standard hoop with a handle attached and you put it in standard diagonal cane position and push it in front of you. I think perhaps you could possibly use that and the walker together, or get someone you know to attach one in a fixed position to the front of the walker.
In answer to your point about balance, I find mine fluctuates with my hearing and depending on what my body wants to do.
Lol sometimes for some reason I tell it front and it goes sideways. Straight means nothing to me pretty much Ezzie
My problem is that my hearing isn't constant. some days it's better than others. I have very good balance, so that's not my problem, but I can hear the traffic from 3 blocks away, better than the traffic right beside me, so it makes crossing busy streets very difficult. I'm almost to the point that I won't attempt it. I used to have a guidedog, and am seriously thinking of getting another one.
lol i'd probably get it killed
hense why I A don't have one, B will never have one and c don't trust them.
me and the cane forever!
I use a braille display with speech. or at least that's how i've found it works best for me. i can get away with just speech though. i always use headphones. i don't know what i'm gonna do once these anolog hearing aids can't get repaired. anthony , sounds like you have the older anolog type that weren't programmable. I simply don't like O&M at all. I know how to take cabs, trains and plains. they aren't that dificult. however getting around a place i don't do well at. Crossin' streets just doesn't work with me, because i cannot tell which direction the sound is comein from. Close or far isnt' so easy to hear either, since the aids amplify lots of sound to the same volume due to the compression i have set on them. see that's the intire reason digital never worked for me, they always tried to make hearing sound as normal as possible, with sounds varrying in volume (at least this was the case the last time i tried them 5 years ago), and I just am so used to anolog.
IS anolog totily not able to be gotten anymore? I've heard something about one day and it would be rather sooner than later that people wouldn't be able to get them. that was a few years backc.
John
Well I can't believe I am posting about this, but I found out less than a year ago that I am loosing my hearing. I do not know what it means to be legally deaf. My hearing loss is that in my right ear a 65 percent hearing loss, and in my left is is a 45 percent loss. I had been fitted for hearing aids and they worked well, but in a pretty major fall they broke, or rahter will not turn on, and since the state I am living in bought them fro me, i can not get another pair. I am finding that they did much more for me than I realized. I have no vision what so ever, am totally blind. My hearing loss does effect my travel and balance. I do use a guide dog and we do very well. I use right now Jaws, turned up, just ask some people who have been aroundme, my Jaws is up loud. I want another pair of hearing aids, but have not a clue on how to get another pair, my health insurance does not pay for that stuff. I stilll have no adjust quite to this, or to the reality that my hearing is going fast. I have neo-sensory hearing loss, and they said mine is progressive.
so I am in the same boat as you all.
Marsha
not sure what you could do ther, I guess try ebay? lol am thinking of doing that myself.
otherwise see if the place you bought them from will repair them?
Marsha: if you are in need of new hearing aids and have a household income of less than $26000, you would probably qualify for assistance through the Seattle based audient program. For all the information, go
here
I know the types of hearing aids they can cover are limited, but I'm sure they have expanded since I last looked in to the program a couple of years ago. Alternatively, if you haven't already, you might want to try your local Lions club. I hope this info is helpfull.
anyone found any good headphones for use with radio aids that have a 3.5 mm jack? AM going mad for some good ones for pub trips etc. Have tried all sorts. help!
Fuster Cluck, thank you very much. They will help people that are in other states right? And yes my income is less than that at this point.
Marsha
yeah the head set thing is a problem for ryan his hearing aids and his head set do not get along at all and he says his hearing aids hurt when he uses them, he got them eight years or so ago, i am looking in to getting medicaid to help out not sure on how much hearing loss he has, need to get him to an E N T but that is probably slow in coming kansas city is slow in general, four months later, and i am still trying to get him in to a neurologist.
wait, are you telling me that you guys ware your headphones over top of your hearing aids?
John
hello John the headphones When I read books don't use the aids but that is making me lose more, so I try not to use headphones not and I can't wait to get you braillesense it is coming any day now. But I have to use the headphone for my school books so that it.
First what is the BrailleSense? You don't use headphones because it makes you lose more hearing? is that what you are saying? or are you saying you cannot understand the speech with your headphones on.
ryan can, he most the time can lets say. he did try to use his head set with his aids, but yeah didnt work... hmmm what to do
use them without aids on. what kind headphones does he got? what kind hearing loss does he got also?
I use my headphones right over the top of my aids. I wear them a bit above the ear, so they sit on the microphone of the aids. If I try to use headphones without the aids, I can hear jaws, but it's so low and muffled that I can't understand it. If I turn it up loud enough to where I could possibly understand it, the headphones distort. Wearing the headphones over my aids gives me the highs that I need. I use the small headphones with the band that voes behind your head, rather than on top. Hope this helps.
I find that bigger cans are good, or IEM (In-ear-monitors) work best.
The IEM ones i like to use are the Shure SE530. Blocks out everything. find useing the very thin small sleves do best for me, as they fit in to my ear the most.
Anyone that wares hearing aids knows about wareing molds, and how molds go inside the ear canal. Well this makes it so the sound goes directly inside of your ear. Just thihnk, that in headphones! tiny tiny they are too, and when i'm on the plain, i can't even hear it with these things in my ear.
Here's a link to read more:
http://www.headphone.com/guide/by-manufacturer/shure/shure-se530.php
Expensive, but on Ebay may be cheaper.
They're so good, that i wish i had a few backup pairs of them. Simply put, they are the best little things i've ever heard.
Very loud on any sound sorce also.
John
Another reason I prefer to use my hearing aids with headphones is that I still want to know what's happening around me. Right now, I'm sitting outside on my balcany, my headphones on, but I can still hear people in the background. To some, that might be a drawback, but if I took my aids out, someone could be practically shouting at me, and I'd never know it. Kinda scarey.
se, i don't want to hear all the outside noises. with the outside noises, i can't hear what is goin on inside my headphones.
John
if I were sittin outside to hear nature, i wouldn't have headphones on, cause even if for some reason i managed to ware headphones on top of my aids, firstly it would sound like shit, and secondly i wouldn't be able to hear what i came out to hear in the first place.
The frequency responce of hearing aids are not what the human ear can hear. The IEM headphones are 20-20KHZ, which is what i want to hear when i'm listening to music or spoken word.
The aids are maxumized for speech. Though i do find pulling out the mold a lil alows some of the lower frequency's to get into my ear, still it is never nearly as good as with my headphones.
See, i'm not one normally to do both outside and inside noise at the same time, if that makes any sense. Much easier to concintrate on one souned instead of trying to tune out all of the different ones amung all the noise.
John
I do understand that, but I live in a highrise building, so I ain't gonna hear any nature out here anyway, and I love sitting outside. When someone walks by and says something to me, I at least wanna have an idea that they're there. I guess our situations are just different.
Ah yeah. Indeed they are. Everyone has there own preffrences too, i'm an audiophile freak, so.... well you get the idea.
John
I do have some really good closed back pro headphones that I use without my aids when I'm in the house and want to listen to music. I can crank it up nice and loud and drown everything out. listening with my aids does take all the bass out of everything, so it is nice to listen to the music without them.
ah. cause i was 'bout to say how can you honestly always listen to headphones with aids on? no low freq's. lol
but ah good, glad you got somethin pro for in your house.
John
Also, like Kat, my hearing has been stable. i lost hearing at age 3. it was due to too much meds to control oxigen while i was in the inkubator.
Mine is slowly getting worse. I can tell in the past couple of years that it has taken quite a drop. Just last year I was comfortable using my desktop computer with no headphones. i don't like to do it now.
but you have uhsers, i think don't you?
John
No, I had measles before I was born, otherwise known as Rubella.
Marsha: yes, it's a federal program, so as long as you live in the US, which you do, you qualify. At JH: uh huh huh huh. You said bigger cans. Those are normally a good thing with audio and women. LOL. I mean, to a certain extent.
Just found this thread. I got digital in-the-canal aids a little over a year ago and long for the old analog in-the-ear ones I used to wear because the sound was a lot sharper. I live in a large city and no longer trust myself to travel independently, which is a real drag.
If you have to pay for "ears", though, you may want to consider going to Costco, many of which have hearing centers and sell pretty good aids for quite a bit less than your usual hearing aid dispenser. The batteries are significantly less expensive as well. Found out when I was traveling in March that I had forgotten to bring a pack with me and had to buy a small pack from a drugstore. Ouch!
In reading through this thread I did come across some audiophiles who had some observations on music and headphones. I found that the bass on SACD comes in quite well for me, but I suppose it's anindividual thing.
It's a love-hate relationship with my "ears", though. Next time I think I may opt for directional microphones.
I don't have much of a hearing problem, but do have trouble wen it comes to distinguishing between individual letters. Like when I'm listening to something on the computer with jaws and I want to spell a word, I can't tell the difference sometimes between b, d, and v or p and t, which is very annoying so get jaws to spell stuff out in the phonetic alphabet or if it is something someone is saying to me get them to repeat it a couple of times. I know someone who is 40% deaf and uses his laptop without headphone because he uses hearing aids, but I don't know how he manages to play audio games on their! Hahahaha!
Hey all,
Well, I'm partially hearing impaired to. I think it's a mild to moderate hearing loss in both ears. So I use my hearing aids whenever I'm out on the street except I really need to get a new pair since I don't have good directional hearing and I hate that when it's time to cross the street. So that's one reason why I like having a guide dog lol. Not the only reason though. But I know exactly what you mean when people are saying letters and spelling things for you and you have to ask, what was that letter again? So whenever I spell things, i say m, as in Mike, stuff like that. It helps more. But i do ok with or without my aids, even though I'd rather wear them in case I'm out. But I just use headphones when I'm on the computer without them, just turn the volume up a little bit and I can hear ok. I think I'm going to lose the rest of my vision though and it's scary. I don't want to ever be deaf and blind totally. I don't know if I"m suppose to lose the rest of my hearing, but since I have to depend on my ears all the time, and I can't fully depend on them now, it's just a really scary thought. I didn't have much vision to start out with, just colors and shadows and light so I'm not losing much. I wish I wouldn't have had too many ear infections, but you can't wish for something that's already happened. Maybe there's a reason for all of it? I dunno. So there ya go, another person who has the same problems as the rest out there that is both blind and hearing impaired.
Wow this is quite educational for the rest of us: I never knew it was that common.
Have many of you had to contemplate learning the sign language yet? I know someone on here said you have to put your hands on the other person's hands just to feel what's being said.
You've certainly got my sympathies.
Tha'ts called tactal sign language.
I personally sorta started learnin it a little, but honestly?
I'm an auditory person.
I dont know anyone that k knows sign language that I could use it with.
Therefor, how would i maintain it?
I know what the letter thing is like too.
So how many of us deaf-blindies have the army alphabet memorized?
Alfa Beta Charly Delta? lol
You don't have to be deaf-blind to have that one memorized. People into any kind of radio do, and I think that's a lot of blind folks in general.
Oh i know that, I was just saying.
I think I'm really starting to fit into this category, I have a moderit to server hearing loss in my left ear, due to years of surgeries and other things done to it, and there really isn't a way to fix it, between the bad eardrum and all the scar tissue
oh yeah you'd definetly fit in.
dawn, i'm thinkin along the lines of some of us needing to use words to understand letters. like for me the f, s, th, ph, telling the difference and that.
hearing jaws read those army letter alfabet, especially when there is no braille display hooked up helps, and tha'ts parshly how i have them memorized.
John
Finally! I now have hearing aids! The NHS may get some things wrong, but the Audiology Program in Nottingham is one of the best. I think I last posted on this topic about 4 years ago. I've had two pairs of hearing aids, a pair of Otican ones that the NHS call Spirit 3's and my latest are Phonak Naidas which work with the phonak ICom. I hope everyone else is doing OK.
Interesting topic. I don't have hearing loss but this is still educational to read.
I want to be a cane travel teacher. With my experience at the center, I helped some people and showed them how to get around. One person had a wheelchair, and she had to take her time and observe everything around her. I don't have experience working with someone with hearing loss, but I'm sure I will.
I am a wheelchair user, but my local NHS won't give me a powerchair, so I'm rather stuck. Good for you for being willing to teach this person cane travel from a wheelchair.
Hearing loss is just something that you have to learn to adapt to. It is life-altering at first, but after all, you will get used to it. Dog guides are very helpful for the hearing impaired. At least for me, they are.