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.