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.