Now Hear This! Musings of a Blind Hearing Aid wearer

At some time or other, most blind people will have experienced that all too familiar situation. You’re in a store, a restaurant, a bank, and the person providing you with service makes a point of speaking louder or slower. It makes sense, right? Since you can’t see, that means you’re going to have difficulty understanding.

 

Usually, no offence is intended. Blind people are a low incidence population, and the person providing the service is simply dealing with an unfamiliar situation.

 

Sometimes blind people joke about this all too common scene that is played out repeatedly, but there’s a more serious side to this. The fact is, a significant number of congenitally blind people are born with conditions that include deafness or a hearing impairment immediately, or that will see their hearing degenerate over time. Add to this the fact that the vast majority of those with a vision impairment develop it in their senior years, a time when hearing can also deteriorate as a result of the ageing process, and you have a good number of people who are dealing with impaired sight and hearing.

 

I was born blind, and it’s my normality. I can’t say being blind doesn’t bother me sometimes. It bothers me when I know I could just see something I’ve dropped and get right to it, rather than use alternative techniques to ultimately locate the object. But then, I’m also short, and that bothers me sometimes too when something is out of reach on a high shelf. We all have characteristics that frustrate us, and largely I view my blindness as a characteristic, not a disability. I’ve never mown anything different, and I’ve never had a desire to see. At this point in my life, being given a whole bunch of visual data that I wouldn’t know how to interpret is something that doesn’t interest me at all.

 

It’s not this way for everyone. I was very fortunate early in my working career to spend 18 months working in the field for the Foundation for the Blind. During that time, I met people who’s daily reality was very different. I met someone who went to sleep fully sighted, and next morning woke up totally blind. Their world was shattered. I met someone who’d survived a prisoner of war camp, but when blindness came, it broke him. I met a nun who after a lifetime of service to the God she believed in, questioned what purpose God was serving in taking sight from her in her few remaining years.

 

My job was to gently and patiently convince these people that the loss of one’s eyesight wasn’t a dying, it was a new beginning. Alternative ways could be found of accomplishing tasks that they thought were impossible. But as someone for whom blindness was a normality, it gave me a much needed reality check about what others experience. When I later became the Chairman of the Foundation, I was a better Chairman because of that time.

 

What blindness was to these wonderful people, hearing loss is to me. The condition that causes my blindness often results in a progressive hearing loss, and it seems I’m someone who won that particular lottery. For the curious, it’s called Norrie Disease, sometimes Norrie Syndrome. Some reading this post will be surprised to learn that I have a hearing impairment. For years, I never talked about it publicly. Part of being able to talk about it now is I think just part of the process of being very comfortable in my own skin these days. I am what I am and people can take me as they find me. But a bit of it is also that I know not talking about it has sometimes created the wrong impression. With past hearing aid technology, noisy environments has often been a struggle, and so I would sometimes hear second hand from people who had made a comment to someone that they’d met me, and how aloof I was. In reality, it was most likely because I was just having trouble hearing, and didn’t know how to say so.

 

The most famous deaf blind person of all was Helen Keller, totally deaf, and totally blind. I’m sure many blind people who have a hearing impairment are told, if Helen could do all these extraordinary things with no hearing and no sight, you’ve got nothing to complain about. That’s why my story is similar to the stories of the people experiencing sight loss later in life. Outstanding though her achievements, no sight and no hearing were Helen’s normality. What I’ve struggled to deal with is the insidious nature of the progressive hearing loss. Hearing music you’ve heard all your life, and knowing how the highs have gone, how much blander it sounds. Functioning less well in an environment where you did perfectly well before. Being less of an active parent than you want to be, because in certain environments it’s just hard to understand. You see when you’re blind, you become very reliant on your hearing. When there’s less of it over time, that changes how you function. It’s a constantly moving target, and sometimes, it’s incredibly demoralising.

 

Please don’t get me wrong though. This blog post isn’t a pity party. I’ve been able to pursue my dream career in broadcasting, hold down some great jobs where I’ve been able to help make life better for people, have a family and a great life. If you’re a parent of a child with Ushers or Norries or some similar condition, I don’t want you to be in any doubt that a great life is possible for your son or daughter. But the reason why I’m being so frank about my own situation, is because what I’ve done has only been possible because of my advocacy skills, not giving up until I’ve had professionals working with me who have the understanding and patience to give me the best results possible.

 

Recently, I obtained funding for a complete overhaul of my hearing technology. I’ve been very fortunate to be working with an audiologist who fully understands how important it is that I have the best technology available on the market today. Not only is it about being able to continue to do my work and put food on the table for my kids, but it’s a safety issue. I want to remain active, to travel, to get out and about. And don’t particularly want to end up squashed by a vehicle I didn’t hear.

 

Being able to hear vehicles is just one example of the challenges blind hearing aid users face when working with their audiologist. When you can see, excessive traffic sounds are generally a distraction because you can see when it’s safe to cross a street. A blind person needs a mode where they’re able to hear the directionality of the traffic, and not have the aids consider it annoying background noise that needs filtering out.

 

Today’s digital hearing aids are computers. They contain digital signal processors that are making many decisions every second about what is irrelevant noise, and what is material you need to hear. Those decisions can be influenced by different programs in the aid. You can expressly switch to these programs, or an automatic mode attempts to determine the program to switch to.

 

At the moment, I am trying the Phonak Bolero Q90 aids. Getting a hearing aid working optimally is, at least in my experience, a process that takes many sessions with an audiologist, reacting to real world situations. That said, I’ve already got a whole lot of life back. I took my partner Bonnie and my kids to the noisiest restaurant I knew of in Wellington, on the day I got the aids. Using the audio zoom feature, I was able to carry on a conversation in an environment where I previously would’ve just sat quietly, unable to participate. When Bonnie, the kids and I went bowling, I was able to enjoy the game so much more because, despite the noise, I was able to hear clearly how they were reacting, and what the score was.

 

I do, however, want to discuss how hard it can be to make blindness and hearing assistive technologies play nice with each other in the digital age. With the previous aids I used from Widex, I had a cable that ran from my hearing aids to a 3.5 MM cable. I’d use this to connect the aids to my iPhone, my computer, and the mixer in my studio. If I wanted to use an FM system, for example in meetings, I’d disconnect the cable and plug the FM receivers in.

 

Phonak now has a gadget known as ComPilot, and it’s clever. It would be reasonable to suppose that the ComPilot would be a massive improvement. There’s Bluetooth, you can connect an audio cable if needed, and the FM receiver can stay connected too. ComPilot just knows when to switch in and out of the different devices. If you get a phone call, and your iPhone is paired with the ComPilot, it just switches to the iPhone and you can manage the call using the microphone in your device. Audio from the call is piped into both ears. What’s not to like? Well, the way a blind person uses this technology is unique.

Unlike a sighted person, I’m not just getting audio when phone calls come in, or when I choose to listen to music. I’m getting audio at all times the phone is being used as it speaks to me what’s on the screen using VoiceOver.

With the Widex configuration I outlined earlier using the cable, in my main program, both the mics and the external audio source were always on. If I switched on the phone, it worked immediately. Since Bluetooth wasn’t involved, latency was excellent.

When pairing ComPilot and iPhone via Bluetooth, it introduces a noticeable lag when using VoiceOver. This makes using the virtual keyboard really quite unpleasant.

If I don’t touch my phone for only a few seconds, the ComPilot disables Bluetooth and switches back to the previous program that was in use. So you can imagine a situation where I am reviewing information and just want to take a few seconds to pause and think. The Bluetooth connection times out, and then next time I wish to review something on the screen again, I have to touch the phone and wait until the ComPilot detects activity on the Bluetooth connection, announces “Bluetooth audio”, and enables it again. This takes time, and it’s time where I can get no feedback about what’s on the screen of my phone. Perhaps this time-out is configurable, or a dedicated program makes a difference to the time-out. This is a work in progress and I’m fortunate that I have people who really want to help me get a good experience.
 
There is another factor that makes Bluetooth a challenge with my usage. When I pair the ComPilot with my iPhone, it appears to be using two Bluetooth profiles, which makes sense. One is a stereo headphones profile which is active when listening to media, and the other is the profile used for telephone headsets, which is active when I am on a phone call and for some other phone-like functions. VoiceOver makes use of the stereo headphone profile but can also be heard when the telephone headset profile is in use. Switching between these profiles is not seamless, and there is a gap. One scenario where this is creating real trouble for me is when using the dictation function of my iPhone. If I’m in a quiet environment, I use this a lot. When I invoke the dictation feature, the iPhone switches to using the headset profile, so dictation is picked up using the ComPilot’s microphone. When I end dictation, the headset profile is disabled, and eventually ComPilot picks up that VoiceOver is speaking using the stereo headphones profile and switches back to it. The trouble is that this takes time. When I finish dictation, VoiceOver immediately speaks back to me what I’ve dictated, so I can be sure that my text is correct before I send it. Because of the switching that goes on in ComPilot, I miss a good deal of VoiceOver speaking back my dictated text.
 
I like the ComPilot in situations where I may be mobile and need access to a range of solutions, (FM, physical cable and Bluetooth). It’s a great all-in-one solution. But in situations where I’m working, it’s giving me a major productivity hit. The way my aids are configured presently, I can connect a cable to the base of the ComPilot, but this disables my access to all but the Sound Flow (automatic) program. You can connect physical cables to the aids themselves, and I’m sure we’ll end up with a solution that allows me to retain the much better hearing I have now and restore my productivity with external devices.
 
My message hear is that if you’re blind and wear hearing aids, your hearing is too important to settle for anything less than what is optimal for you. Try to articulate the issues you’re having. I find I get quite emotional about my hearing as it’s so important to me, so the best way for me is to write everything down logically and clearly, and then send a clear summary to those with whom I’m working. The relationship between an audiologist and a blind person has to be a close partnership. 
 
If you feel you’re being given the brush-off, don’t put up with it. I’ve parted ways with audiologists who lacked empathy for my situation. But at the same time, remember that hearing aids aren’t glasses. Even when a hearing aid is configured optimally, you’re never going to hear as if your ears were functioning perfectly. And there can come a time for people with degenerative hearing loss where hearing aids can’t help any more, in which case it’s time to discuss cochlea implants.
 
To those living with people getting new hearing aids, it can be a stressful time for the wearer, and therefore for the entire family. Everything sounds different, and probably louder. That can initially cause fatigue. They can be misconfigured. Try to be patient. And if you’re the hearing aid wearer, try not to be too grumpy, OK?
 
Finally, to hearing aid manufacturers, you have an absolute gold mine in blind people who know things about audio who use your products. We’re your ultimate test, because we don’t lip read. We rely entirely on your product to have conversations. You should seek us out, and get us beta testing.
 
Do you wear hearing aids? What are you using now, and what experiences have you had with today’s hearing technology working with your blindness technology products? Do you have any tips for the care and feeding of audiologists? Share your thoughts in the comments.
 

26 Comments

  1. Travis R.

    Hi Jonathon, I have the same setup with the ComPilot. The delay is probably the biggest annoyance. I think it has to do with the hearing aids initalizing with the ComPilot but I can’t prove it. I have tested just plain old Bluetooth headsets with my iPhone and they connect so fast, so it has to be something with the ComPilot and/or aids. I agree with all of what you said about the configurations. I am glad there are two Bluetooth profiles, but I’d take 3 or 4 profiles, for using VoiceOver in quiet environment, noisy environment, and the same thing for phone calls. Btw, you can use a Braille display while also using the ComPilot. It takes longer than I’d like for the Focus 14 Blue to connect when doing this, but once connected it works fairly well and the lag is usually tolerable. (This is with an iPhone 4, I am hopeful a new iPhone will make it better, but that may be wishful thinking.) If you find an even better configuration, please share.

    • Jonathan Mosen

      Thanks Travis. Yes, one thing I am also working on is a program that will mute the mics entirely, so I can work properly in the studio. I wish we could engage with Phonak over the VoiceOver issues, but hearing aid manufacturers as a rule seem very reluctant to deal with anyone other than audiologists.

      • Jim Snowbarger

        As I mentioned on the other post, I use the Oticon Alta Pro, which has a similar device to the ComPilot mentioned here. Oticon has chosen to use a lower bitRate mode for blueTooth that significantly reduces latency at a slight but not bothersome cost of fidelity. It works quite well for telephone, or computer speech, acquired through a custom blueTooth transmitter sold by Oticon. . If I connect to my HIMS u2, the fidelity is terific, but the latency is annoying. But, there are no timeouts or automatic disconnects.
        Oticon directional microphones are worthless. You really don’t get any significant and useful amount of supression of ambient noise. It is actually difficult to tell when they are directional and when they are omni. (are you feeling omni?)
        As a blind person, I prefer to switch off all the geeky techno magic that changes settings on the fly, the noise reduction, and all the rest of it. I find that I do better, especially for navigating by sound, if I just use them as expensive amplifiers, with frequency shaping, and a little compression for loud sounds. I just remove the aids, and use regular headphones in the studio. Otherwise, I miss the really low frequency. And, the 5 millisecond delay that most instruments introduce is bothersome. You don’t perceive that as a delay, but a change in tonal quality, as the sound through the aids mixes with the sounds in your head. You will really hear that discoloration if you put headphones over your aids, because you will hear the sound via two distinct paths, one through the aids, and the other passing around the aids. So, the mixing of those two signals, one of them delayed by a few milliseconds, will cause that coloration.

        I would like to hear more about Audio Zoom on the Fonak. The ability to focus in better is something that would really help me. I am really experiencing a decreased ability to pick signal out of noise. Just geting old, I guess.

        Honestly, I would give my right ear if I could just adjust my own instruments myself. I know I could achieve a much better result for myself if I could do the fine-tuning, instead of going to the Audi, making a few quick guesses about needed adjustments, and then going home for a week or two to see how it works. It takes forever to get things right. But, in my opinion, that business is a bit of a racket. Somehow, they have wrapped it up tight. You can pay a small fortune for a pair of instruments, but you don’t have the right to adjust them. In the end, they are just sophisticated amplifiers, but no more complicated than some studio equipment. fortunately, you don’t have to have a license to mess with your studio gear. Not yet, anyway. If I found out how to crack that industries lock on my life, I would do it in a heartbeat, illegal or no.

        • Jonathan Mosen

          Hi Jim. I’ve never warn headphones over the top of BTE hearing aids, it just never worked comfortably for me, which is why the cable from the hearing aids to my mixer is so important. I lost a lot of lows this way in the past, but with the Q90s, the lows are incredible. I didn’t think that sort of low frequency response would be possible from hearing aids.

          The audio zoom on the Q90 is surprisingly good. When you put the aids into this mode, they become highly directional. There’s also extensive noise reduction going on in real time, but it’s rather like the noise reduction you’d use in a studio. It’s taking a sample of the environment, determining what is noise, and eliminating what noise it can. Also, it takes the sound directly in front of you and narrows the stereo image, making it easier to hear the person you want with both ears. The aids do this with the phone as well. Put a phone to your ear and the audio will come from both ears.

          Couldn’t agree more regarding the software that drives these things. There’s a lot of protective, pretentious stuff about how these are finely-tuned medical instruments. They are audio equipment, and I too could speed this process up if I could do my own tweaking.

          For traffic, I do have a program that turns off most of the clever stuff, applies a little bit of compression to protect me against really loud sounds, but essentially gives me a liniar experience. This helps with navigation.

          • Mike Cole

            Hi All, My hearing loss is old-guy related, a big drop in high frequencies. I have expensive odicon hearing aids I’m in trouble without. The company claimed that their system simulates the brain signal processing about directionality, maintaining right and left amplitudes, etc. I was allowed to test them at home and compare them with another brand of hearing aids that made no such claim, the two hearing aids acting independently from each other. Mine apparently do interact, and indeed a simple indicator is that the volume on one adjusts the volume on the other. I chose these, because walking around outside, dealing with traffic and so on seemed a bit better using them, however whether that was due to any brain simulation is definitely not certain. They actually just sounded better. I too would love to play with the parameters my audiologist accesses with her computer during my visits, but I don’t really know what’s going on. In a way it’s as though we are wearing fancy equalizers, but when we turned up a mid-range band, the normal world-sound developed a kind of sea-shell effect, like listening down a mailing tube. The high frequency boost I get is wonderful. Like Jim, I take off my hearing aids to listen with earphones. The strange compression effects I get like when the micro wave beeps can really be terrible. I don’t know if that’s just normal for digital hearing aids or if some of the self testing, the guarding against squealing can be reduced. This discussion is the first I have heard and I have been nearly desperate to talk about this sutff, primarily with other blind people, since we know things, and we care about certain kinds of things in ways we aren’t the only ones who understand, but we are more likely to understand. I know that hearing aid manufacturers spent their development time getting the devices smaller and more efficient. They dealt with an image problem, sighted people associating hearing aids with aging, I mean how evil is that? I think we could give valuable feedback to manufacturers; I’m not sure our priorities have made it to the front burner.

          • Jim Snowbarger

            Mike, No, our priorities sadly don’t register. The manufacturers keep us beyond the audiologists, who are presumed to know more than we do.
            the strange response of your hearing aids to tones, such as the microwave beeping, is the hearing instrument thinking that is feedback, and desperately trying to cancel it. Since that also sometimes happens when listening to music, Some people create a special program that has feedback cancellation turned off. If you are lucky enough to be able to still enjoy music, it lets the notes, especially the higher notes, come through, without being garbled by the feedback manager. When you use that one, managing feedback becomes your responsibility.

          • Jim Snowbarger

            Jonathan,
            You are wearing BTE hearing aids, behind the ear. How does the receiver fit into your ear? Is it a custom mold of hard material, or a soft rubbery dome. My audiologist told me that the hard, custom molds tend to stretch the ear canal over time, so I am using the soft rubbery dome. It is extremely comfortable, but has the slight down side that the efficiency of the coupling to the ear varies slightly as you move, and change facial expressions. So, the low frequency response seems a bit variable. I will touch base in a few months, to hopefully confirm that the Q90s are stil meeting your need.
            On another subject, when I had good hearing, I got in the habit of clicking my tongue from time to time, to get echos from the environment, to locate an obsticle, or sus out the size and shape of a room. Now that I wear hearing instruments, I have found that I need to change the way I do that slightly. The old technique seems to get lost in the 5 millisecond delay that all digital hearing aids introduce, plus possibly getting squashed by compression. . But, I find that snapping my fingers still works quite well. Unfortunately, less subtle methods. The clicking of the tongue works ok in very close situations, when done very softly. But, tnot so well at louder volumes. The cane tip on concrete still works as well as it once did. I resisted digital instruments in part due to concerns over that ability to navigate. But, I’m happy to see that sound navigation is still quite possible. As you have discovered, that will work best with nondirectional microphone settings, and all the noise reduction turned off.

  2. Chris Westbrook

    I noticed the delay with a bluetooth neckloop that I had purc hased, and it seemed to have something to do with the a2dp profile (that’s the stereo one) because phone calls didn’t seem to have that problem. Wish we could just say use the hands free profile or whatever they call that becasue the signal seems to be constant when using those. I find a neckloop with a able that plugs into a headphone jack to work much better. I actually have two of them, one to hook into my computer and one to hook int othe iphone, plus then I ahve an extra one. The neckloop I am using is from william sound I think. It doesn’t provide any amplification, but it is a little less expensive and more durable than the ones that do have amplification. There is one that is battery operated that has a built in mic, but it didn’t seem durable enough for me for the price. I will be getting new hearing aids soon myself I believe. Wish we could get funding here, I will be paying out of pocket most likely. I don’t find it takes too many sessions to get them right, but I think my loss is probably more severe than yours, I have a 99% loss in the left ear and a 100% loss in the right ear, though I still get some usefulness out of that ear with hearing aids. Hearing aids have come a long way from when I started using them twenty-some years ago. back then they were squeel squeel squeel since they were analogs. Fun times especially with growing ears.

    • Jonathan Mosen

      So you use the neck loop with the telecoil facility of your aids? That would be mono, and for me with a less severe hearing loss, stereo is important to me especially in the studio.

      The improvement hearing music now from external sources is phenomenal with these new aids. Hopefully we’ll end up with a situation that completely takes bluetooth out of the…uh…loop, when it comes to the iPhone.

  3. Scott Davert

    I have found, with my experience using Bluetooth devices with my Resound hearing aids, that the audio quality which I’d get through using the microphones for environmental sounds produces much better quality sounding music. Resound makes a couple of different external devices for connectivity. One is the Phone Clip, which as its name suggests, pairs with your phone and achieves similar functionality as the Com Pilot when it comes to connecting with your phone. They also have a Mini Mic, which is sort of like a short range Bluetooth FM System that connects to your hearing aids through Bluetooth. This also has the option of connecting to external devices using a 3.5 MM cable.
    I find, as a general rule, that Bluetooth technology in hearing aids has a way to go before it can really be reliable. As you said in your initial post, the pairing can time out quickly. This even causes problems for me with my Resound hearing aids when there is a pause between segments in listening to a radio show, for example. I can’t speak to the VoiceOver use with the Bluetooth technology, since I typically mute speech and use braille. There is certainly a lag that is greater with the use of other Bluetooth devices when I’m connected through Bluetooth to my hearing aids as well as a Bluetooth display. I find that the sluggishness becomes less when I no longer rely on speech. I have also found that the sluggishness is less on the iPhone 5 when compared with the 4, so perhaps it’s a processing issue on the phone, or that the 5 has better Bluetooth technology.
    The other thing I sometimes do, which is a slightly less high tech solution is use my t-coil and run it with the Noize Free ear hooks from Tecear. The spelling of the company is correct, but not 100% sure on the product name, because they went for a funky spelling and I can’t recall what that spelling is for sure. Anyway, other than the fact that I’m listening to audio through an inductance coil, which I don’t think was ever intended for music, it sounds fine. I get my stereo effect, and a fare amount of the sounds from the music, if you compare it to an AM radio broadcast. However, the microphones on the Tecear products are much less than desirable to the person on the other end of the phone if you use it for that functionality.
    I guess my point with all this is, there is no one solution and that one type of situation may call for one device to be put into use, while another may call for something entirely different. The hearing aid manufacturers are only partially open to what we have to say, because we’re a minority within a minority. As such, they can only do so much to cater to our needs.
    As someone with a much more progressive hearing loss that did not really start to impact me until I was a teen, it’s been a long road for sure. I’m coming to the point where I will soon need to leave audio behind, and will do so reluctantly. However, I’m not closed off to the experience of a world of silence like I used to be. Whether I like it or not, it’s an eventuality for me, so I’m investigating alternative methods to access my environment like braille displays, Morse Code in such a way that I can feel vibrations so that I can continue my radio hobby to a certain extent, tactual sign language, face to face communication methods through technology, street crossing cards since I can no longer accurately listen to traffic patterns, etc. My point with all this is that we have to do our best to advocate for usable technology, but we also have to continually adapt to both our hearing losses and our environment around us to keep living productive lives.

  4. Nicki Keck

    Jonathan, et al:

    I am actually new to all this and so am seeking any information I can get and any experiences I can read about from blind users with hearing loss. the reasons I think my hearing has gone downhill, or should I say the cuases of such, are two. first, I worked for AT&t for 5 years doing relay calls for those who were deaf. when we first got the job, we were told that the TTY tones one had to hear sometimes on a daily basis could have a detrimental effect on our hearing. I truly believe they did have a detrimental effect, as since then, I have noticed deterioration slowly. the other thing that I think could be causing hearing loss is that my family has hearing loss from all sides. my mother, in her early 60’s, now wears hearing aids and was told that it came from nerve damage that was hereditary from her father’s side of the family, my grandfather. My grandmother on my biological father’s side had hearing loss to the point that at the end of her life, she had to use relay, the very service I had worked for. I have noticed I have trouble hearing multiple sounds from the same side; I have trouble hearing Voiceover if the TV is on or if someone is talking. I used to be a very social person, but after a short time in a room full of people I need complete silence. I come home from work all day after talking to customers and Merv is talking to me and I just want silence, complete, blissful silence. I don’t hear things people say to me. so, I have decided to bite the bullet and get my hearing tested. part of me feels that maybe it’s all me and I don’t have any issues, that I’m overreacting to nothing, that everyone has these issues, but then, another part tells me that even if that turned out to be the case, getting the test done is not going to give me any loss, except perhaps the copayment I will have to pay and the time taken, which will be worth it to me either way, particularly should I have issues. I truly believe that I do, in my heart of hearts, as does my husband. I will tell you that having my Focus braille display to use with my iPhone has been invaluable to me in allowing me to rely on other senses other than my hearing. IN any case, sorry for such a long comment, but it is just so helpful to me to know there are others in this journey who, like me, are blind, have hearing loss, yet not complete deafness from birth, like Helen keller.

    • Jonathan Mosen

      Good luck with that, Nicki. A hearing test should be able to give you definitive data with which to work. Hope it goes OK.

  5. Terry Clasper

    Hi. I’m using the exact same set up as described in the blog entry. Its interesting that its only with the Bolero aids that Phonak have started to use the duel bluetooth profile. Prior to this everything was done through the one profile, which made using the phone in noisy environments with the com pilot Icom or whatever device you were using an impossibility.
    Personally in the main I’m having a lot of success with the com pilot scenareo. IN the studio because I have the mics attenuated by 6db hearing external sources doesnt prove too much of a distraction to me. However the real pain is the fact that, as pointed out in the blog entry, the com pilot program switches off after just a few seconds. This should be a variable parameter which can be set to manual if necessary.
    Away from the comms issues, whilst the stereo zoom makes a real difference in very noisy situations, and enables me to have conversation in such environments, I’m not having a great deal of luck in moderately noisy situations at the moment. I”m sure this can be tweeked but just now its an annoying factor. I also find that, although in quiet situations everything is very clear, it sounds kind of unnatrual with the high frequencys being there but not natrual. I’m currently using sound recover which kicks in at around 2.6 K where my high frequency hearing drops off, and I”m wondering if that is what is making high frequency sounds seem unnatrual.
    Finally on the subject of hearing aid manufacturers engaging with us, I was very lucky in that I was 1 of two people in the UK given the opportunity to trial the Boleros. The problem was that the trial was only a few weeks before the launch of the product, thus although I did provide extensive feedback on my experiences over a two week trial, I think it was too late in the cycle for anything to be done at least for the initial launch of the aids with my feedback.
    In conclusion whilst I feel these are probably the best aids I’ve ever worn, I’d love direct audio input, and feel the bluetooth com pilot concept could be far more configurable and flexible.

  6. Phyllis Sstevens

    I have aids for the first time now. I feel that the aids work fine, for what they do, but it’s not the same as when I heard normally. I have age related hearing loss and it’s slight right now, but when I put the aids on, I hear frequencies I have never heard before. I don’t quite know how to explain that to people. Hearing aids tend to magnify everything, but they cause you to hear things you never heard, normally. Also it’s not louder, at this point, I need but clarity. I was tested in the mid 80’s at a rehab center and the lady told me my hearing was excellent so having these aids and hearing differently is still a bit disconcerting.

  7. Andre van Deventer

    Hi all
    I have a very strange setup that I use which is somewhat different from the norm perhaps.
    I wear a cochlear implant in one ear and a phonak Naida in the other ear. I believe the naiad is at present the strongest aid on the market.
    Now connecting this in a way that will give you the best audio quality is quite a challenge.
    When using direct connections I do the following:
    I have a small splitter with one 3.5 male plug and 2 3.5 mm female sockets.
    The 3.5 male socket goes into my iphone for example. One socket is for the cable from the cochlear implant while the other socket has a small 3.5 mm to 3.5 mm male cable which connects to the compilot. I used to have an audio shoe on my naiad in my right ear that accepted one of those 3 prong euro plugs with a cable that plugged into the splitter. But it became rather cumbersome.
    With the bass boss set correctly I can hear sounds below 50 hz which is not bad for a hearing at all I think. The strange thing about such a setup is that in my left ear with the implant I hear signals from about 100 hz to 8000 hz and in the ear with the hearing from about 45 hz to about 1000 hz. I have no frequencies above 1000 hz.
    It gives you a reasonably acceptable frequency range.
    So the situation is that you have high to middle frequencies on the left with middle to low in your right ear. I know this should sound weird but for some reason my brain has learned to make sense of this.
    One problem I do have is that the radio signal from the implant seems to sometimes interfere with the compilot so that you may experience some dropouts.
    Finally I went to a professional recording studio and recorded two tracks which did not come out that badly in spite of my hearing loss. I did this firstly as it was something which I wanted to do all my life and secondly to show people what you can really do in spite of a severe hearing loss.
    Apollogies for the long message!

  8. a Drenth

    Jonathan,
    I first need to say Thank you for the original post. I too have a severe hearing loss, that has only happened in the last year or so. I will say that I had been one of those blind people that didn’t think too much of other blind people who had additional disabilities much. In addition, I was one of those blind people for a long long time had great hearing, and used that hearing to its fullest extent. Boy how my eyes have been opened. The vanilla blind community does not understand much about persons who have a hearing loss, or who are deafblind. This is why I think its great you have posted this, your out in the world, all blind people know your name, see you as a leader, and now those same people will see that you too have a hearing loss. Your mentioning it, the elephant in the room, will help us all in the long run. Today I have a 90DB loss. I was fitted in June with the Oticon Chili hearing aids, and a Streamer device. I haven’t been happy with the new audiologist. First he is hard for me to understand as he has an accent. And secondly he knows nothing of a person who is blind, who has a hearing impairment. He does not understand that I use my hearing, the little I have. I use it to its fullest extent. Still with these new aids, I am now able to hear speech better. But still not hear traffic and environmental sounds. Like your system, the Oticon system has a delay in connecting with the Bluetooth. I can now actually have a conversation on my Iphone. Of course this is in quieter situations. Still in very noisey areas, I don’t hear much of anything but just noise, its overwhelming and frustrating. I have in the past and currently am having issues with the molds to my aids. At some time in the very near future I will be attending the HKNC. I am glad to hear that I am not the only one that uses a lot of energy to just functionally hear. I wish that there was more openness about the different hearing aids, what they do, how to work them, what works best for this environment and so on. I am on several deafblind email lists, and although very informative, there isn’t much talk about hearing aids. Like I said, this has only been, my hearing loss in the last year or perhaps two, so I am new. I am looking for anything and everything that can help me function. I want to be active, I want to be able to work, I want to be able to travel. I am not happy sitting at home doing nothing. It is difficult because those who are blind and have a hearing loss, have so many challenges, so many different communication needs, and just in general have many needs.

    Thank you again for being so open.

  9. Andre van Deventer

    Why not come and join us on the deafblind technology list if you are not there already? We do discuss things related to hearing aids, communication devices and cochlear implants. It would be wonderful to have more people there who also use their hearing.

  10. Deborah Kendrick

    Hello Jonathon and all,
    When I initially read this post, I wrote to Jonathon privately. As s many have expressed here, I was just so elated to read that someone else in our community, someone I know and deeply respect, was facing the same issues. I have been very secretive about my hearing loss until maybe 2005. It began in adolescence, but I fervently disavowed that it wasn’t perfect until I was in my twenties and had my first child. Others could hear her cry when the sound traveled down the stairs, whereas I needed a baby monitor.
    I got my first hearing aids 20 years ago, but long hair hides such things. Now, I tell everyone and has been said here by others, I find that often those who are blind are less less in touch than might be hoped.
    I would like information on the deaf-blind technology list that was mentioned here. I am also also looking for good suggestions for hearing from one room to another. In the past, I had an infrared headset for this purpose, then an FM device. Both are long deceased and I would like to hear my computer, etc., when I’m more than three feetrom it!
    Jonathon, others have said it and now I add my voice, thanks for speaking up.

  11. Travis Roth

    It is interesting to me that other devices mentioned in the comment section here also have the audio streaming timeout issue. The Phonak ComPilot’s timeout issue does not just effect Bluetooth, but even the audio line in. It makes it hard to use with a screen reader which stops and starts, and after a couple second stop the ComPilot fades out, so when the synthesizer starts again you miss the first few words. I have pondered if it’d be possible to trick the ComPilot into thinking it is always receiving a stream by playing an audio track in the background that is silent or otherwise of a noise so soft it cannot be heard. I have not tried this yet.

  12. Chris Westbrook

    FOr those who are having trouble with bluetooth, using the t-coil with a neckloop can work well also. I use this with my iphone and don’t have any delays. I ahve a neckloop from Williams Sound, they come in different lengths and have a standard headphone jack at the end. I still use the iphone’s microphone as this loop doesn’t have a built in microphone. If your hearing aid doesn’t have hte t-coil, ask your audiologist about it, they should be able to put it in. YOu should be able to have the t-coil with or without environmental sound, so in a noisy situation you can here t-coil exclusively in one or both ears.

    • Howard Goldstein

      I prefer behind-the-ear inductors, Music-Links, rather than a neckloop. I find them to be louder and clearer than a loop and of course you get true stereo sound. I don’t use an iPhone but can’t imagine why the Music-Links wouldn’t work with it.

  13. David Goldstein

    I agree Bluetooth has a way to go to be practical for hearing applications. I wish there were one-piece devices we could plug into earphone jacks that could transmit directly to the hearing aids.

    The Bluetooth on my high-powered Unitron aids has all the problems people have mentioned, with the exception that it will stay engaged for about five minutes with no signal going to it. An additional problem I have is with the delay for the sound to reach me. My aids came with a clip-on microphone. It’s great to give someone who will speaking from across a large room, but when used close-up, such as in the passenger seat of a car, the delay between the hearing aid mics and the signal from the clip-on mic causes a disturbing echo.

    There is evidence that manufacturers can fix a problem when enough people complain about something they can relate to. I have Phonak’s equivalent of an FM system—micro links, or whatever it’s called. When using the auxiliary input on the transmitter, the unit shuts off after a pause, making me miss the first few words from a screen reader. I heard this was fixed on the latest generation, why? Because drivers reported problems hearing the first words of their GPS.

    While I guess it’s a good thing that manufacturers borrow innovations from the technology currently in vogue and keep up the crusade of eliminating moving parts that can wear out, I am beginning to think it’s at too much of a sacrifice for the user. Designers would do well to keep analog aids in mind, for what I consider to be much more efficient controls and the possibility of service by local dealers. Is it really necessary for those of us who do not need the constant automatic adjusting to have a computer of such power that it takes nine seconds to boot up? A lot can happen between when the aids are switched on and when you start to hear. It was so much more flexible to have a three position telephone switch on each aid than to have one push buttons that give you far fewer choices. Even the sighted wearer needs audible signals to keep track of the settings, and we blind people suffer when a switch on a remote or accessory has been replaced by a touch control or button with an indicator light. We used to be able to interchange ear molds or borrow an aid when ours was repaired. Now things don’t come apart as easily, and an aid may have to be sent back, even if the fitting of the mold must be adjusted.

    I hope Jonathan’s wonderful post and our comments are read by as many people as possible. I hadn’t realized there were so many of us dealing alone with questions unique to the dual loss like, are there two people, or did the one I met come back in? Did she go away before I had time to figure out whether she said, “There’s orange juice to the right of the mail on the table”, or “aren’t you going to braille what you asked me to write on the label?” Then there are the ones that are pretty much unanswerable, like, “did they do something in the adjusting that has really changed things, or is it just the way I’m hearing today? Should I have given the first product I tried more of a chance, or is there something better out there I don’t know about?

    There’s rarely enough time or enough regular transportation to try everything with an audiologist, and the audiologists have a difficult time keeping trained on all the different company’s software. The manufacturers now have support hotlines audiologists can call, but the support people don’t know how the aids are currently set and don’t know anything about the client. It took years to discover my complaint about tones or long vowels sounding “bumpy” had to do with the anti-feedback adjustment. My theory is that not even the manufacturers know what effect an adjustment will have when combined with the myriad of other adjustment variables. Could I have possibly gotten that idea from Windows?

    All we can do is try our best. We have to stick to our guns with it need to keep going until a way is found to be comfortable and function at the level we consider to be normal for us.

  14. Andre van Deventer

    It does seem though that the compilot from phonak seems to be the better one of the devices from hearing aid manufacturers although it is only available for phonak hearing aids. According to a friend of mine, the same type of device manufactured by oticon for their aids does not give stereo sound. I’m just curious about something from folks who use the compilot with both hearing aids – what is the frequency response that you get out of using the compilot only? As I stated in a previous post I don’t use the icon only. So would be curious what the results are.
    Also please keep in mind that the compilot is not a Bluetooth device but works differently.

  15. David Harvey

    Hi Jonathan I only got an hearing aid this year however I’m finding it makes the inside of my ear sweet and battery difficult to replace.

    • Mike Cole

      Hi David: You raise a couple of good points. I can only say that ear molds can be adjusted. Discomfort and comfort is as important as anything we all have said. Keep after your audiologist to get it feeling almost like your hearing aids aren’t therre; it can happen. And batteries? I have a ritual for disposing of the old one before I peel the paper back off the new one. Sometimes that paper removal can be incomplete, more in the adhesive than pieces of paper, so sighted people can’t always see the problem and forget being able to feel it. My hearing aids are so darned indispensible that I have learned to have tons of patience and eventually things work out. Encouragement David, hang in there.

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