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Thursday, 03 November 2016 19:19

Deafness makes you more blind

My name is Colin Hetherington and I suffer with Usher Syndrome which is retinitis pigmentosa (blindness) which gives me all sorts of daily troubles from glare tonight blindness, headaches flashing interference and tunnel vision all this coupled with hearing loss . 
My current state of affairs are about 3 degrees of vision in my tunnel with moderate to severe hearing loss.I have to wear a peak cap for glare and reaction lenses to protect my eyes from the sun.  I currently wear Phonak hearing aids with a neckloop which is Bluetooth but quite frankly it's out date.  Technology has moved on a lot since then.   Oh, and I've got a guide dog Jason.


I've recently had an appointment to get fitted for new ear moulds to be told you have a wax build in your ears so up come back in 2 weeks!

In my desperation to deal with the wax problem I did the stupid thing of purchasing cotton buds, not a good idea.  Please do not try this at home they all advised me anything smaller than an elbow should not be placed in ones ear!  After pulling out masses of wax and thinking I was doing a great job I suddenly went deaf in one ear and lost about half my hearing In the other!  I persevered for a few days but started to think I had done some serious damage or even lost a cotton bud!  I had it checked by the nurse and then a doctor who assured me it was only wax that I had forced down the canal - Advice given NOTHING SMALLER THAN AN ELBOW in there sir. Use ear drops to soften the wax and come back in ten days. 

Let me tell you this I've never been so exhausted trying to pick up on conversations also concentrating with my guide dog it really did drain me so so much I actually felt like I was losing my confidence and a dark cloud was looming above me . If I'm totally honest I really haven't been myself and a bit worrried my hearing may not get back to what it was and that's crap but its what my brain is used to.

 
I'd filled my ears for nine nights with ear wax remover hoping and praying in the morning it would be better but it never happened.   I found my self sitting in a room with loads going on but I could not  pick up the noises it was like being in an echo chamber with delayed reaction like waiting a few seconds after the conversation had ended for my brain to process.  This is hard hard work and it's been going on for about three weeks.  I've felt very vulnerable out with my guide dog in the dark with my narrow vision night blindness and newly acquired extra deafness.


Today my doctors appointment came round.  I was dreading the result as much as I was looking forward to it incase I had actually damaged something inside or flatted even more of the little hairs we need to stand up right in the inner ear . 
Within ten minutes she had changed my life no more wax I felt like a miracle had been performed and suddenly found my mobility a lot lot easier.   Straight up the road cotton buds in the bin.  So for me and many others like me it's a case of we need the best there is to compensate for our senses . I won't be doing that again that's for sure . Deafness does make you more blind!

I recently read a piece virtually comparing hearing aids with earBuds / EarPods and hearing aids with glasses!

I read the piece several times and still thought it strange.  I'm 21 years old and have worn hearing aids since 18 months old.  Even in my time hearing aids have come a long way, in fact with this comparison to earbuds / EarPods the look appears to have come full circle however the technical ability has improved tenfold.

I can remember being shown a picture of a friend wearing hearing aids probably 30 years ago.  A big bulky box worn on the chest with wires to the ears, I felt so lucky to not have those but the hearing aids that sit on my ears and attached to ear moulds.

My issue from about 3 or 4 was that I wanted coloured hearing aids not the skin coloured ones that old people wore in fact up until I was about 10 or 11 I insisted that both hearing aids and ear moulds were pimped up in bright colours, being young and female I wanted to make my hearing aids look cool, trendy and fashionable, something to be proud of, just like being deaf.

Back then it was all about the look rather than what the hearing aid was actually doing for me.

So I disagree that hearing aids couldn't be made to look fashionable, even then, yes more limitations than glasses but they could be made to look how I wanted them to.  

For me the only difference was that wearing hearing aids was more rare at school than wearing glasses.

In the early days I wore a radio aid in as trendy a bumbag as possible, I had just about every colour, shape and size you could think of thinking back my friends thought it quite cool, the wires I hated that attached to my hearing aid via a special connector (a shoe) made it look as if I had and was listening to what was then called an MP3 player, back then they too had wires. 

I hated the wired connection but my friends thought it quite cool!  Thankfully as time went on I was delighted those horrible wires disappeared and wireless radio aids became available.  

The fact hearing aids have gotten smaller and more discreet is a bonus and I no longer wear brightly coloured ones the most important thing is that my hearing aids now allow me to hear as best I can based on my level of hearing loss and in as many situations as possible and it is this assistive technology that costs. 

The hearing aids I wear today, Linx2 are tiny and along with the amazing access to sound and connectivity they give me they do allow me to stream music direct, however thankfully that is just a tiny part of their capabilities as being deafblind my need is far greater.

I read "Today's hearing aids are overpriced and unimpressive".

I totally disagree I was born deaf and registered deafblind with Usher Syndrome at 14 years old and I've never been so impressed in my life, the bigger issue is making this amazing and enabling assistive technology available to more.

The best technology will always come at a price and for people like myself be a necessity in allowing accessibility to the world that most take for granted.

My Linx2 hearing aids pair perfectly with my apple products and allow bluetooth connectivity to all sorts of things, they  enable me to do so much more than listen to music, they are as I've said before "Life Changers"

Small and wireless is fantastic but earbuds / EarPods my Linx2 are definitely not!

 

 

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