Touching on pornography

This is a long way off topic but it’s just a thought I would like to share to lighten the mood.

I recently saw that Braille pornography is being produced for the first time. Playboy have previously produced a Braille version of their magazines in which the pictures are normal but the text is in Braille (which oddly assumes that people buy the magazine for the text…). This new idea is to produce raised images that the blind person can feel and appreciate. The mind boggles. Thankfully I’m not blind and don’t need to wonder about the effectiveness of this tactile experience.

I’m not proposing that Playboy should produce a deaf edition (although I’d be interested to hear ideas for how this might work!). But this Braille porn thing got me wondering about sexual services for deaf people and whether we are being offered a rum deal:

• Are there any dating sites specifically for deaf or disabled people?
• Are there any deaf-aware prostitutes out there? Ones that can sign, shout, or don’t mind an interpreter being present in the room? Moreover, are there deaf prostitutes and, if so, what assistance do they get from Access To Work?
• Premium-rate phone lines: Are there any people on the far end who are trained to shout, e.g. “YES! YES! YES!” rather than “Yes! Yes! Yes!” or to use words that deaf people are likely to be able to hear? The cost of calling these numbers could be double that for a hearing person, depending on whether the deaf person keeps asking for repetition. Maybe they do, maybe they don’t. But “YES!”, “WHAT?”, “YES!”, “WHAT?”, “YES!”, “WHAT?”, “YES!”, “WHAT?”, “YES!”, “WHAT?”, “YES!”, “WHAT?”, “YES!”, “WHAT?” is getting a bit ridiculous, even for me.

Audiologists are an endangered species

The more I think about this, the more I realise that audiologists are the problem. They are blindly trying to do what is, frankly, an impossible job. When they admit to that fact and act upon it, we will start making real progress.

In the old analogue days, audiologists had just a few options at their disposal. They could choose the correct sort of hearing aid, make sure it was working (or at least doing something), and crudely adjust a couple of screws – usually to the minimum or maximum marks which means that for any hearing aid, there were only about four common programming permutations. With digital, the permutations are practically infinite.

So why’s the job impossible today? It’s impossible because the audiologist can never know exactly (or even approximately) what the patient is hearing, no matter how good the patient is with his or her verbal descriptions. Trying to describe a soundscape with words is like trying to paint the Mona Lisa with a broom. The deaf patient has to keep painting and repainting the soundscape with insufficient words to do the job. Leonardo didn’t paint by numbers so why should we have to?

What deaf people need is appropriate hearing aids, the equipment to configure them and, most importantly of all, training to use the software. If audiologists are to survive, I think that their role must change from demigod-chief-programmer status to one in which they act as trainers to deaf people. Just show us how to set up the software and what the different options are for… and then let us get on with it! Audiologists are still needed to supply and repair our hearing aids. They are still needed to support and guide us. And they are still needed to configure the hearing aids for people who, for whatever reason, cannot do the job themselves.

Audiologists are of course also wanted by those people who secretly enjoy having warm goo piped into their ears. :-)

My point is that audiologists are not needed in the current all-controlling role which is blighting countless lives. So, please evolve or go the way of the dinosaurs.

Now, where was I?

First of all, I must apologise for my absence just when things were starting to get a bit juicy. There are a few reasons why I haven’t been blogging and I suspect that readers can relate to them:

1. My personality type is not suited to blogging. I get really enthusiastic about things, persist for a while and then let them just fizzle out. To be a good blogger requires greater self-discipline and persistence than I have.
2. When I can’t hear well, I can think of nothing but how badly I can hear. It gets me down and I feel the need to get things off of my chest. When I can hear relatively easily, I appreciate it so much that I don’t spend every waking moment fretting about or dwelling on my deafness. In short, I have managed to improve my hearing aid programs and a huge weight has been eased off of my shoulders. Being released from prison probably feels much the same. I have been enjoying life so much that I have had little time for anything else.
3. So much happened in a short space of time concerning this project that I felt unable to document it in a logical sequence. I still can’t. So you will just get bits of the jigsaw puzzle here and there. You can assemble the puzzle yourself. I will try not to give you too many bits from some other jigsaw puzzle!

More posts are coming but here’s a brief summary of where I am up to:

• I spent something like 75 hours programming my hearing aids. It was a trial and error process as I learned my way around the software. There were highs and lows – progress was in both directions.
• My hearing is far better now than it has been over the last five years. My head is not in a bucket anymore. I am enjoying music and birdsong all over again. I can’t tell you quite how great that feels.
• I have a great sense of empowerment, liberation and freedom; at last I have some control over my situation.
• I’m more convinced than ever that do-it-yourself programming is the right way to go. I fully intend to make sure that I can continue programming my hearing aids into the future.
• The job still isn’t done. Programming is surprisingly exhausting and I need a break in which to gather the strength to make further adjustments.
• As well as the hardware and software, you also need to have an experimental attitude and patience. Buckets of it.
• If you’re thinking about trying to program your own hearing aids, stop wasting time! Do it! I sincerely wish that I had bought the gear five years ago and I wholeheartedly recommend the approach. It might not work for you but that’s a risk that’s probably worth taking.

Progress! And unavoidable schizophrenia...

At last I have received the HI-PRO USB interface, the leads to connect to my hearing aids, and have found the PFG_8.6b software from the internet with which to get started.

The HI-PRO interface is sold in two versions - one is serial and the other is USB. As far as I know, you can use either (and serial ones are only available used so, if you can find one, it will be cheaper). But the USB version is faster and it takes its power from the USB cable, so there is no need to worry about separate power supplies. My HI-PRO USB box has taken a convoluted route from the factory in Denmark, via the UK and USA before finally reaching me in Finland. It is made of a vile colour 1980's sort of plastic which gives it the appearance of a kids' toy. Albeit a very boring toy for very boring children.

This morning I have installed the HI-PRO software, connected up the HI-PRO interface and then installed Phonak's PFG_8.6b software which is compatible with my Valeo 311 AZ Forte hearing aids. Subsequently I have successfully downloaded my hearing aid data to the computer from the hearing aid.

I'm eager to get playing with settings but I must be methodical about it. To start with, I must save the existing data so that I can revert back to it when everything goes pear-shaped. As far as I can tell, each client can only have one set of data. So I will store the existing data under my own name. Then I will invent a new personality to save the changed data.

My first impression of the programming software is that it looks quite complicated. I didn't expect anything less. The key problem is that the software itself doesn't present a clear workflow - so it's up to me to work out what to do first. I'm quite sure that, if Phonak made a consumer version of the software, they could (or would have to...) make it much more user friendly. I'm confident that I will be able to find my way around. But if you've never used a computer before, this software is probably not for you.

Why aren’t we hearing more about this problem?

I started testing digital hearing aids about fifteen years ago and, straight off the starting blocks, I wanted to program my own hearing aids. In view of my own strong urge, I’m sure that many other people must want to do the same thing. Therefore it’s surprising and strange that no fuss has been made about this in the press. I don’t know the reason is but I do have a hunch or two…

Hearing aid wearers fall into categories, typically: mild, moderate, severe and profound.

The mild and moderate groups encompass people who can hear at least some or even most daily sounds without hearing aids – albeit at a low level. Their hearing aids only need to give moderate amplification to restore hearing to a level close to normal. Such hearing aids are relatively simple because they are doing less work than high-power aids. It follows that these hearing aids are relatively easy to program to a live-withable level. If we compare it to a car engine, it can be running badly (misfiring on all cylinders) so long as its running well enough. 

The severe and profound groups encompass people who can hear virtually no useful daily sounds without hearing aids. Their hearing aids must give massive amplification just to bring hearing up to even a moderate level of deafness – the wearer is still going to be quite deaf, isolated and find communication difficult. By default it is very difficult to fit hearing aids to the most severely deaf – not least because high amplification causes masses of hard-to-control feedback. The programme must squash the sounds of daily life into a very small space between what the wearer can hear and the threshold of pain (the latter is much the same whether you’re deaf or not). This group needs to drive their hearing aids to the max to get every last microwatt of power and performance from them. Misfiring on all cylinders is no use at all to this group. Nothing less than optimal tuning will do! So pimp my soundscape!

I would argue that the severely deaf are the group which most needs the freedom to program their own hearing aids. However, they’re also the group with the lowest confidence and self-esteem so they are also the least likely to organise themselves to make the required media fuss.

All in all, it looks like we will be last in line when it comes to self-programming when we should actually be at the head of the queue.

Matchmaking for hearing aids

My intention is simply to program my own hearing aids. Then I just want to enjoy life. However, I’ve suddenly realised that there are many interesting possibilities which would open up if every user had programming equipment.

Great idea 1: Your settings are not only stored in your hearing aids; they are stored as data files on one or more computers. So consider this: you should be able to send just the data file to your audiologist so that they can make minor tweaks based on your comments and send the files back to you. Just think how many hours that would save us on visiting audiologists and how fast it could be!

The excitement doesn’t stop there…

Great idea 2: If you can swap files with your audiologist, there would be nothing stopping you swapping files with other users. It could be a recipe for chaos but, with the right controls in place, it could be great. What’s needed is a matchmaking service or lonely hearts club for hearing aids!

Pretend that the different hearing aids are the males and the audiograms are the females. For each male/female combination, there should be one perfect set of settings for eternal happiness – and we know that they are not usually (or ever?) the default settings that the hearing aid manufacturer’s software suggests.

How would it be if you could upload your hearing aid model and your audiogram to a website, along with your hearing aid’s data file? Then you could search for and download the other data files which correspond to your hearing aid and audiogram. Perhaps it would be faster, easier or more fun to download preset profiles that other people are satisfied with rather than blindly tweaking your own parameters around? If nothing else, someone else’s profile might make a far better starting point for programming than whatever settings you already have.

For greater usability, data files could have interesting names like “Tranquility mix”, “Psychedelic mix” or, for a bit of a laugh, “Disney mix” (in which everyone sounds like the famous mouse and duck). I can see a lot of possibilities in this. 

3-2-1 BANG! The starting gun has fired...

With thanks to the internet and ebay, I have tonight placed an order for a USB Hi-Pro programming interface and some suitable Phonak programming leads.

I've ordered from the USA so there are high postage/packing charges and my wallet is about US $770 (approx. €550/£470) lighter. On top of that I might still get clobbered for import duty.

It's a fair bit of dosh. But hey! If I make any progress at all then I have no doubt that it will be worth every cent.

The journey has begun!!!

Great news! We are not alone!

Yippee!

I have found a couple of very interesting forum discussions which are well worth reading if you want to program your own hearing aids:

http://www.rnid.org.uk/community/forums/products/why_cant_i_program_my_own_hearing_aid/

http://www.hohadvocates.org/wwwboard/download_thread.php?site=hohadvocates&bn=hohadvocates_hohconcerns&thread=1255578823

It's comforting to find that other people want to program their hearing aids. Interestingly, the RNID discussion is one of the most popular/commented/participated discussions of all - that's encouraging.

By the way, while you're at it, do explore both forums - there are many other threads that are of interest to us there.

If you find any other especially interesting and relevant forums, please use the comments box to add a link below.

What you will need

After doing some surfing around, I have compiled a general list of the hardware and software which you will need to configure your own hearing aids. This is a simplified post in which I describe the ingredients at the very highest level. Future posts will delve deeper. The following list starts from your brain and ends at the programming computer.

•  Your audiogram(s) (optional): This is usually used as the starting point for programming. However, it should be possible to download your current settings from your hearing aids and use those as the starting point.
• Hearing aids to program: If you have spare or broken hearing aids to practice on then consider doing so. Note that you don’t need hearing aids to explore the manufacturer’s software.
• Cable(s) to the programming interface: The cables depend on make and model of hearing aid. For example, Phonak currently use three different types of lead. If you wear two hearing aids then you will need two leads to be able to program both sides simultaneously. Be careful to get the right leads – they are very expensive and use odd connectors which will prevent you from making your own.
• The programming interface: This is expensive! There appear to be two or three different types of interface available. It seems that these interfaces can be connected to all (or almost all) hearing aids on the market today. Interfaces seem to start at around $500 and are rare as hen’s teeth.
• Driver software for the interface: (maybe) It is not clear yet but it sounds as though driver software is needed to allow the interface to talk to the computer. For all I know, if it is needed, it may well be supplied with the programming interface.
• Licence to use the interface: You are maybe supposed to have a licence to use the interface. The licence appears to be optional in much the same way as a TV licence. If you’re in the USA then you likely don’t know what a TV licence is and will wet yourself laughing when you find out.
• Cable between the programming interface and the computer: Older interfaces have used serial connections but more modern ones use USB cables.
• Manufacturer’s software: Surprisingly, much of this can be found online for download if you know where to look. You just need to ensure that you get a software download which is compatible with your hearing aids. The software does not appear to be backwards compatible so newer software won't necessarily work with older hearing aids. From what I gather, you can explore the software without making any connections to your hearing aids – so, don’t delay, download today!
• Instruction manuals (optional): If you can get instruction manuals for the software, interface and hearing aids, you might find programming easier. All the same, manuals do not seem to be essential.
• Audiology books (optional): There must be some good books out there which would be worth studying before making adjustments.

That’s all you and I should need by all accounts. Let’s see how things pan out though.

 

The pros and cons

The plan is to keep adding to these lists of pros and cons as the project advances so that, when all is said and done, it will be easy to present a balanced view of both sides of the concept. This is just a start and the lists will grow. I don't aim to be biased but, depending on your perspective, cons might be pros and pros might be cons. 

 

Pros:

• Compared to audiologists, users have all the time in the world in which to make major and minor adjustments.
• Users can avoid trying to describe the meaning of blue to a blind man.
• The time between “appointments” is entirely down to the user. No stupid waiting times (typically measured in months).
• Where users are successful, they can save health services money on audiologists.
• Users are included in the loop and can feel as if they have some control.
• Users who have explored the software are in a better position to explain their needs to the audiologist while using common terminology.
• A user who has verified for himself/herself that the settings are optimal is more likely to be a happy patient. There's nothing agreeable about wearing a hearing aid which could be properly set up for you on sub-optimal settings.

  

Cons:

• Users could muck up their hearing.
• Users could keep mucking up and losing the settings made by their audiologist (potentially wasting a lot of time).
• Audiologists could be made redundant if users are doing a share of the work.
• The cost of the programming equipment is prohibitive.

Feel free to suggest additions to these lists!

Manufacturer’s software (Light versions)

While hearing-aid wearers take a back door approach to configuring their hearing aids, they will be using the exact same software as their audiologists and have exactly the same freedom to carelessly adjust every parameter.

This is potentially dangerous to the ears but, in practice, I reckon that the risk is very low. But still, if you have damaged (or do damage) your hearing as a result of self-programming your hearing aids, I would very much like to hear from you.  

To avoid the risk of damage, I have been wondering whether manufacturers might consider making light consumer versions of the programming software and, if they did, whether the software would be of any use.

For example, the reduced software version might only let us adjust a subset of the parameters. Or it might let us adjust all of the parameters but only within a restricted range (centered around the audiogram) so that, no matter how high you set the controls, you won’t cause damage to your ears. Or maybe you’d have to activate a legal disclaimer online to adjust parameters beyond a given range.

Certainly some control must be better than no control and a subset is a step in the right direction.

But in the end I think that users want to see everything that can be adjusted so maybe it is better for us to use the full software versions anyway.

Thoughts and comments welcome!

Configuring cochlear implants

I just met a new hearing specialist who casually announced that I will probably need a cochlear implant before 2020.

First of all, let me say that I believe and hope that the specialist is wrong.

Ever since cochlear implants first appeared I have always been dead set against having one for a whole host of reasons. I know people who are very happy with their implants. Each to his or her own; don’t let me deter you from getting them. But I really don’t think implants are for me, at least not until I have completely exhausted the possibilities of traditional hearing aids.

Why do I mention this here though? Aren’t I going off topic? Well, no.

Cochlear implants are configurable too. I have no idea what is involved and cannot begin to say whether it is a good idea to let patients play with the implant software. But there must be some similarities in the programming methods and, judging by my experience of hearing aids, I could find myself wanting to configure my implants in due course too.

So, if you have any experience of self-programming cochlear implants, or a wish to do so, please add your thoughts, comments and links to this article.

For the time being, this blog will focus on traditional hearing aids.

When’s the right time to take the plunge?

Is there an optimal time to take the plunge into configuring your own hearing aids? If you are considering doing this then you will likely face the same issue.

When you get new hearing aids, you want to trust that the audiologist will set them up correctly. It can take months and more to get used to new hearing aids and/or settings, so you don’t know to start with whether you’ll have the same hearing aids six months down the line. Unless you are filthy rich or reckless, you don’t want to be splashing out on expensive dedicated programming equipment to correspond with each change of hearing aid.

Officially it seems that you are not allowed to self-configure your own hearing aids anyway. In my experience audiologists will think you’re mad if so much as suggest programming your aids yourself. If you have an audiologist who will help and support you to do so, consider yourself very lucky! Most of us can’t afford to upset our audiologist or screw up the settings in our hearing aids.

Therefore, in trying to strike a balance between rules and reality, I suppose many of us will just have to reach a level of frustration where we are prepared to accept any risk and expense. The danger is that, like in my case, it could take you five years to become sufficiently frustrated. If my project is successful, I’m sure I will be wishing I’d started this five years earlier and then be beating myself up for it!

The good news is that my early research suggests that one expensive PC interface can be used to program all (or almost all) hearing aids which are available today. Other items (hardware and software) are needed but these are much more affordable than the interface. This means that, if you choose to take the plunge, you can still use your main investment with other devices which you might switch to.

I can only suggest that, if you’re minded to configure your own hearing aids, start investigating as early as possible so that you don’t wish you’d got started sooner.  

Splash! Glug glug glug...

Measures and milestones

Eventually I should get to a point where I can look back and evaluate the success (or otherwise) of this project.

It would not be fair to judge success or failure only on the basis of whether or not I manage to improve my hearing aid configuration. There are many milestones along the way and I expect to derive great satisfaction from every one I attain, regardless of the final outcome. If I learn that I'm not as smart as I think I am, that's still a valuable lesson.

I need to have clear and reasonable objectives. Make no mistake, I'm still going to be very deaf at the end of this project; I can't cure tinnitus, increase hearing-aid reliability or solve everyday discrimination.

So, chronologically-ish, here goes:

1. Can I find out exactly what hardware and software I will need?
2. Can I successfully buy or acquire the necessary hardware and software?
3. Can I successfully install said hardware and software?
4. Can I download and archive (very important) the settings currently stored in my hearing aids?
5. Can I make adjustments to my hearing aids (no matter whether they're good or bad)?
6. Can I improve my hearing aid configuration in any way at all?
7. Can I configure my hearing aids so much that I am truly happy with them?
8. Can I get the audiologists and specialists to test and approve my new settings?
9. Can I spread the word (e.g. through newspapers) to other deaf people so that they can benefit from my experience and configure their own hearing aids? In the ideal world people would have clear legal rights to configure their own hearing aids.

In addition to the above metrics, I would like to add a couple more:

1. Can I stay on topic throughout this blog? Deafness is a big issue in my life and it will be hard not to digress from time to time. I'll try not to.
2. Judging from comments on this blog, has anyone found anything that I have said helpful?

Some readers will likely spot a flaw in the above list: how can I prove to the outside world that my settings are better than those which the audiologist has set up for me? It is possible but it isn't easy.

First of all, I have recently had my hearing tested in a "sound field". This test shows what I hear with my hearing aids and also shows how well I can comprehend Finnish words when they are spoken at a good level. Provided that I can get another sound test conducted after I have configured my hearing aids, it should be easy to demonstrate that I'm not off my rocker. All the same, this test is only a small part of the story. For a start, it's only looking at one frequency response (programme) and only in one very specific situation.

Much of hearing is subjective and we all tend to get used to whatever we have to and consider it normal. Novice photographers don't notice that the colour temperature of a photo is wrong until they see the colour-corrected photo alongside. I can't compare my hearing settings side-by-side. The brain needs time to adapt to all changes and it must be remembered that my hearing naturally fluctuates anyway on a daily basis.

Besides changes to the frequency response, there are many other control settings which can be improved. For example, when I switch from one programme to another, my hearing aid will beep at me - the number of beeps tells me which programme I am in. Even the beeps can be configured though, at least for volume but probably also for tone etc. Yes, I do want to fiddle with the control settings as well as the frequency response!

Apart from the measurements which can be independently proved in the sound field, I'm afraid that otherwise you are just going to have to take my word for it. If you are unfortunate enough to know me personally, you will of course be able to assess for yourself how easy it is to converse with me and, most importantly of all, my level of personal happiness.

A question of terminology

If you have stumbled upon my blog while surfing, please tell me what terminology you used to find your way here.

My first problem when setting up this blog was finding a short, descriptive name for it to match my objective. I don't want to be writing some long-winded explanation a zillion times if there's a simple term that I can use.

Deafness is plagued with horrible clumsy terminology. Maybe I find it horrible only because it is so personal. Who knows?

Every time I write "hearing aid" I cringe. If Apple made a hearing aid, would they call it a hearing aid? I'm pretty sure that they'd call it something funky and cool like an "iHear".

When I started school, I wore hearing aids but no-one had ever used the term "deaf" in front of me before. So when kids with lisps started asking me "Are you death?" I was mighty confused. Thankfully my classmates stopped asking when I stopped wearing the black cloak and scythe to school. I don't like the word deaf. Nor do I like the many replacements such as hearing impaired, hard of hearing, etc. Someone smarter than me should come up with some more agreeable terms!

Other people are also trying to program/explore/configure their own hearing aids and the most common terms being used here on the web seem to be "user programmable" and "consumer programmable". Neither term is entirely satisfactory.

"User" isn't god-awful but I just don't think of myself as a user. Hearing aids are in some ways like parasites which cling to my body, use me and suck all the happy juices out of me. I don't want to "use" my hearing aids. I want to put them on, turn them on, and be so happy with what I hear that I just forget they're there.

"Consumer" is not a particularly good substitution for user although it sounds better in marketing speak. We do not eat or consume hearing aids. If by some curious chance you do eat hearing aids, I'd love to hear from you! There must be a reason why they print "May be harmful if swallowed" on the battery packs. Depending on where we live, a large proportion of us do not buy our hearing aids either. Let's leave the word consumer for consumables such as food and toilet paper.

My full venom is reserved for "programmable". That word conjures up nightmarish visions of geeky people, staying up through the night, writing new lines of code for their hearing aids. Hell would be where a doddery old lady suddenly exclaims "Hey, I've just created a babelfish application!". I don't want to be a geek. I don't want to spend every waking moment tweaking the original subroutines. I just want to be able to set up and configure my hearing aids and then leave them well alone.

For the moment I have settled on "User configurable" although I would prefer something a little closer to "User explorable" which allows people to simply find out what is possible without implying that they make the final settings.

Until further notice I plan to use the abbreviation "TOUCH" (TOwards User-Configurable Hearing) as the name of this project. Of course, this isn't perfect either. We have five senses (or six if you're lucky...) and I will stand accused of mixing one with another. But, as I said, I've never liked the clumsy terminology of deafness. So I don't see why you should either. :-)

Welcome!

If you are one of the growing number of people who would dearly love to be able to program your own hearing aids, I hope that my reports in this blog will help you on your journey.

This first post is long. I hope that my future posts will reach the table in more easily digestible portions.

Before I go any further, I want to tell you that I welcome feedback and debate - so comment away!

I'm the wrong side of 40, male, English, and living in Finland. Severely deaf since birth, I have worn hearing aids pretty much all of my life. Accoustically I was very happy with analogue hearing aids but their reliability and (ill-considered manufacturer-driven) obsolesence meant that, five years ago, my head got plunged into a bucket of muggy digital slosh. In spite of my best efforts, the world has sounded as though I've had my head in that bucket ever since. Enough is enough! You may detect and understand that I'm fairly angry with my world. As this blog progresses, it will likely become clear why. But if the project which gave rise to this blog is successful, I hope to emerge happily from the end of my all-too-long utterly isolated tunnel.

So, what's the problem? Hearing aids are classed as medical devices. Consequently, consumers cannot purchase them from the manufacturer, cannot communicate with the manufacturer, and cannot obtain the software and hardware required to be able to configure the hearing aids themselves.

If you want a hearing aid you have two options. You can get them (often free) from the health service or from a licenced dispenser. For the purpose of this blog, it doesn't make much difference which you choose, except to your bank balance. Either way, you will not be allowed access to the tools you need to program hearing aids yourself.

It's comparable to buying a high-end music system and then being told that you're not allowed to tune or adjust it in any way. If you want to turn the volume control up a bit or change the radio station then sorry but you'll have to make an appointment, wait three months, take a day off work and then take your music system on a one hundred mile round trip for the adjustment to be made. And then they'll manage to screw it up anyway so you'll have to go back, and back, and back again. The difference with hearing aids is that almost all manufacturers behave in the same way; you have no choice.

The medical reason (excuse/smokescreen) for not allowing customers to program their own hearing aids is essentially because we might damage our hearing. Obviously there is some potential to do that but, if you're that way inclined and ambitious, you could deafen yourself with a standard ghetto blaster! Yes a lot of hearing aid users are elderly, doddery and lacking in the required dexterity; user-programmable is not the solution for everyone. But there are also a lot of younger persons, many of them engineers like myself, who do not fit the stereotypical demographic. Manufacturers and hearing professionals would do well to pay attention to us. I'm happy to sign legal disclaimers if it means I can adjust my own hearing aids.

It must be clear by now that I want to program my own hearing aids. But why would anyone want to?

Imagine that you've met a blind person who wants to know all about the sky. "The sky is blue." you say, to which the blind man replies, "What does blue look like?". Where on earth would you start? In my case, I'm in a strange country where I don't have a good command of the language. So, if you like an added challenge, describe blue to the blind man in Finnish!

Now imagine that you've just had some new hearing aids plugged into your ears. The sound will most likely be odd beyond anything you can imagine, let alone describe. Within a few seconds, after you have heard absolutely nothing of the world at all through them, the highly-trained, ever-so-clever, I-know-better-than-you audiologist will, without fail, ask you the same deep and meaningful question: "How does that sound?". How on earth can anyone answer that question?

How many terms do we really know to describe what we hear? We can all comment on volume. Some of us can comment on tone (too much bass or treble - but would be hard-pressed to identify a peak at 400Hz). We can also say that something is distorted but most of us couldn't begin to accurately describe distortion. In fact there are myriad parameters that hearing aids can be adjusted for but, without training, the consumer cannot know what all of the parameters are. I have a degree in electronic engineering and I can't describe what I hear. If I can't do it, what hope is there for others?

Audiologists could help by asking more intelligent probing questions. Unfortunately, they don't. They want to set you up in a short appointment and then see the back of you. When you leave the fitting room the audiologist can return to his or her fully hearing life. The deaf person never can.

I'm the one who is deaf, I'm the one who lives with it 24/7/365/Life, and I'm the one who hears the world through whatever unsatisfactory filter the hearing aid audiologist sets up for me.

The audiologists have failed to set my hearing aids up properly but I believe that my hearing aids still have headroom for optimisation. So what I want to do is to get the necessary hardware and software so that I can explore the adjustable parameters of my hearing aids in my own time. In the best case I will successfully program my hearing aids myself. Failing that, I will at least become more aware of the full range of adjustments which can be made, thereby making it easier to communicate with audiologists.

Here's hoping that this blog will bring user-programmable hearing aids / consumer-programmable hearing aids a step closer.

Hold my hand and let's see where the rollercoaster takes us.