A A A Accessibility A A A A
Wednesday, 08 April 2020 14:48

Sometimes its the little things!

Today I went for a long walk with my guide dog Frankie.   Frankie works hard but gets plenty of free time to balance this. 
Today we walked up to the woods passed the dams, I was very aware of the fact of avoiding chit chat, it is not always easy with a blonde Labrador but we went early when not too many people were about . The amazing thing was I could take my time and enjoy listening to the sleepy environment around me.  Often the sound of silence is magical after years and years of experiencing whistling and feedback from my old NHS hearing aids.

Today was a beautiful day, the sun was shining it was bliss hard to believe that with all that is happening around the world at the moment!

In the woods the birds were singing and boy there is plenty for them to sing about spring is upon us. Today I realised something I’ve never heard before and that is the sheer number of different bird calls there actually is . Music to my ears. I also found myself laughing as I heard Frankie paddling in the running water.

I really enjoyed my escapism today away from today's harsh reality but all thanks to Molly Watt Trust GN Hearing and the wonderful staff at The Hearing Clinic, Glasgow without a doubt LiNXQuattro have changed my life.

Having Usher Syndrome is a rollercoaster of emotions as your vision ebbs away.

Going blind is all consuming so much so we almost lose sight of the real importance of access to sound.

For me going blind took precedent!

I had retinitis pigmentosa and I had macular oedema.  My consultant was so concerned about the macular oedema I was given drops, I was given tablets and ultimately I had a small procedure on one of my eyes.  I was seen every 3 months for the first 4 years after my diagnosis.  I had appointment after appointment, low vision clinic, VI Liaison Officer, this test, that test the list went on and on and it was absolutely exhausting.

To be honest I didn’t really understand it all back then, I had been used to appointments, audiology and speech therapy. Looking back my life had very much been about working with one adult or another on a one to one or in small groups because of my deafness. 

However, as time progressed and I matured I began researching retinitis pigmentosa, macular oedema and Usher Syndrome - naturally I began to realise the severity of my condition and over the years I have felt a strange kind of grieving for my sight.  I have been sad, I have cried, I have been angry, I have felt emotions I never knew existed, the result of which I found myself feeling very different, very isolated and on occasion very scared of the future.

Whilst we were all dealing with my progressive sight loss the one thing that enables me to be me is my deafness, as strange as it sounds my deafness had become the one thing that could, would and does enable me to live a pretty positive life, but only with assistive technology.  There is some amazing assistive technology to enable deaf people.

I was born deaf, I never grieved for my loss of sound, I’d never had it to lose it!  I had hearing aids from 18 months old, they could enhance and enabled me to access sound, thanks to those old analogue hearing aids I learnt to speak.  It took a time but I was very well supported.  The digital hearing aids I got then enabled me to really get going and along with a radio aid I did really well and was able to be as inclusive as I chose.  There were difficulties but I had developed coping strategies because deafness and hearing aids were all I knew.

One of the first things I noticed just before my Usher Syndrome diagnosis was that I felt more deaf.  I was really struggling to hear, what I hadn’t realised straight away was that my sight loss had denied me the ability to lipread, see facial expression and gestures, things that help enable deaf people to hear, yes, us deafies hear with our eyes.  Lipreading is a huge part of understanding and enablement, up to 40% is heard with our eyes, I had lost that.

Looking back now losing the ability to hear with my eyes made my life so much more challenging.  I don’t think people realise how tiring being deaf is, always having to concentrate on listening, having to use your sight to access information, its tough, however deafblind is beyond exhausting and sometimes totally overwhelming. 

Having Usher Syndrome is truly challenging and painful for the people closest to us, often a feeling of helplessness because so far there is no cure, however there is some incredible assistive technology available.  In my opinion we need access to it and we must embrace it to live as positive a life as possible.

Being deaf and going blind is gut wrenching but what many tend to do is concentrate so much more on the blind part of the condition when in actual fact and in my opinion we are missing out on the real importance of our ears. 

Much more consideration should be given to our deafness and what hearing aids can do to enhance our lives.

For those following my story I have been fortunate to be wearing GN Hearing smart hearing aids for several years. 

My Resound LiNXQuattro smart hearing aids have enabled me to literally fill in the gaps made from the loss of visual clues like lipreading, facial expression and gestures and more.  These visual strategies are said to be 40% or more of how deaf people access sound! 

Today I hear so efficiently that I no longer miss the visual clues.  I can hear around doors, I can hear inside and outside, I have directional hearing, I hear tone and clarity.  I have depth in my hearing, I am very fortunate. 

Naturally my hearing aids have an app, Resound 3D, it enables me control over my hearing. 

I can use my iPhone or applewatch to make adjustments: I can adjust volume settings, mute my hearing aids.  Adjust speech focus, noise and wind noise levels. Adjust treble and base to suit.  There is a tinnitus manager.  There is a help locate lost or misplaced hearing aids.  There is a remote audiology assist.  The list goes on and on.

I can use my iPhone as a phone thanks to bluetooth connectivity and streaming, imagine life without access to a phone, I had that for 20 years!

Before smart hearing I would switch off my hearing aids whenever I could choosing silence to relax after a busy tiring day, today I relax listening to music, music I can hear, lyrics I can hear and I totally enjoy it, music is so therapeutic.

Without a doubt I’d love to be able to see again but its not happening anytime soon so I embrace as much enabling technology as I can to live a fulfilled life.

My smart hearing aids are the catalyst to my accessibility toolkit and should be made readily available to all hearing aid users living with Usher Syndrome.

 

Thursday, 16 May 2019 07:02

GAAD - Not if but how!

Indeed back in the 19th Century it was Helen Keller who stated “DEAFNESS SEPERATES US FROM PEOPLE AND BLINDNESS SEPERATES US FROM THINGS”. Back then she was right, she lived in a time where there was no assistive technology to help her live her life and having read about her since my own deafblind diagnosis it is fair to say she was one determined and inspirational lady.

I have often referred to both Helen Keller and Laura Bridgman before her.  They both found a way to communicate and to make the most of their lives.

How we have moved on, I cannot imagine the isolation and frustration they would have endured. 

Today there is no need for anybody to feel the separation/isolation that was experienced back then. 

My disability isn’t the only issue when it comes to accessibility, more often than not I have been the educator. 

The problem with this has often been those older than me, more educated or more senior than me can appear to have a problem listening!

When I was at a mainstream primary school as a deaf youngster I was very well supported because my teacher of the deaf understood deafness, equally my VI teacher knew her stuff but put the two together and both used mainly guess work to support me!

Being deaf meant I used hearing aids and a radio aid to access sound, the rest of my support was from people who for me were both patient and kind, providing me with confidence and the ability to be included in all aspects of mainstream school life.  I was not seperated from people.

Early access to sound and appropriate support enabled me  good communication skills which I used to tell my educators and support team what I needed particularly as my sight failed, the question again was were they listening? 

The blindness diagnosis alongside deafness was beyond challenging and at this stage my support system began to creak and fall apart in a number of ways.

I was provided with a VI teacher (visual impairment) an older lady who was sympathetic and good at her job but knew nothing about deafness and as time revealed she was a bit of a technophobe, this was a real problem as it had become very clear to me that technology would be my way of accessing so much.  I did eventually get a teacher who specialised in deafblindness and she was great but I only had access to her once a term!

Only 10 years ago many saw modern tech as ‘flash’ and inappropriate for school whereas I saw it as my way to be inclusive.  I didn’t have to stick out like a sore thumb and I could make lessons individually accessible.  Fellow pupils did not have to put up with large text or contrasts they didn’t want because all adjustments were made by me for me.

I became knowledgable about assistive tech by accident really and I applied that knowledge to my schooling. Unfortunately many educators stuck in their ways would openly admit they “don’t do technology” but do they know how much that holds people back?

I am delighted to hear that younger kids living with usher syndrome are using modern technology like iPads and MacBooks in school, also lots of apps to access eduction, enabling them to not only fit in but to be active achievers in mainstream environments.  Things are moving on nicely but there is still so much more to do.

I no longer feel separated from people as although every morning I wake up a deaf person I soon fit my smart hearing aids and I am able to access sounds that make our world go round and I am a part of it, I am not isolated unless I choose to be.

Blindness is different, definitely the more challenging condition, particularly being combined with deafness but I refuse to be separated or isolated from things so I have embraced technology.

I am an ‘Apple Fangirl’ I don’t say this because no other tech works I say it because it works best for me.

Apple products have some amazing built in accessibility features which I am very familiar with and they have got better and better forming my hub for inclusion, the ultimate icing on the cake for me is the connectivity to my smart hearing aids, GN Hearings LiNXQuattro’s.

Using my iPhone I am able to access numerous apps made to make life easier for the blind, some of the best made by Microsoft.  Without my hearing aids being bluetooth connected I would not be able to benefit from some of these apps which use audio description meaning I need a decent level of hearing, massive thanks to the team at GN Hearing for their innovative products.

The accessibility tools I use are all mainstream so useful and widely used by many it remains that all too many websites are not accessible or set up to enable full use of the built in accessibility features on most digital devices.

This Global Accessibility Awareness Day I’d like people to see accessibility as a doorway to inclusion, my wish would be for people to think about accessibility in everything they do. It is not just about getting in and out of somewhere it’s about everything, it’s a part of everything, it should be at the top of any to-do-list as it matters to all of us. 

It should never be if but how!

Friday, 26 October 2018 16:32

LiNXQuattro 'LiNX to Everything"

I have to admit that as time goes by, wearing high tech smart hearing aids has become just a part of me.  I imagine this must be how natural hearing sounds, if that makes sense! 

GN hearing’s assistive technology over the past 3 years has sort of become a part of my DNA, a real part of me, something I wouldn’t want to think about changing and for this very reason it’s almost trickier to begin talking about it.  Nevertheless I am going to try and share my recent experiences with the latest GN Hearing re-chargeable additions “LiNXQuattro”.

About a month ago when I was fitted with them https://youtu.be/I7oXcSy9EEA

I was not just excited to be receiving GN’s latest and most innovative smart hearing aids but also excited and curious that the hearing aids I was being fitted with would be the rechargeable version, I know to many excitement wouldn’t be a way of describing “rechargeable hearing aids,” maybe useful or maybe practical but for me being deafblind I was excited - no more fiddly tiny batteries, easily lost, often resulting in no hearing until battery found or shop found to buy spares!  As organised as I’d be I’m a girl, I change handbags regularly, have all sorts of things to carry and on occasion that spare pack of batteries I’ve fumbled around for in my bag have had all dead batteries!  Leading to frustration, anxiety, sometimes even panic when I’m in an unfamiliar area and “virtually completely deaf” quite frightening.

No more having to pack spare batteries or worrying I’d lose sound whilst out and about - it really is the little things!

Wearing two dead hearing aids would make me feel more deaf than I am without hearing aids at all so I’d even take one aid out to use the tiny bit of residual hearing in an exhausting effort to keep my baby toe in with reality - of course this was ridiculously unreliable because lets face it, I am severely deaf and registered blind I need and totally rely on my hearing aids day in, day out and I can say without question that since being fitted with GN LiNX2 followed by LiNX3D and now LiNXQuattro this incredible technology has compensated in a positive way for my deafblindness more than anything.  I’ve said it over and over and cannot stress the importance of this assistive technology it really is the “gamechanger”.

I’m going to begin by comparing my experience of having hearing aids with batteries and moving to rechargeable ones - shoutout to all hearing aid users : You know when you can tell your week is up and the sound quality starts to fade and you hear those beeps indicating you’re in need of a battery change? 

That feeling when you change the batteries, that fresh feeling, almost feels like your hearing has improved a kind of ‘fresher!’ hearing (I personally loved a good new pair of batteries, no hearing person could understand that satisfaction but WOW new hearing aid batteries!)

Well, with rechargeable hearing aids, a full, new battery every single day - “fresh,” “clean” just like new hearing aid batteries every day, what a great start.  A simple charge takes a relatively short time, I recharge overnight and throughout my waking hours use/stream without a care in the world.  I have got into the habit of taking the little charging unit with me but am yet to need it - better safe than sorry until I know exactly what these aids are capable of.

If you’re hearing I can imagine you might be struggling to empathise with this however I just had to mention that it’s a very noticeable improvement with these new babies and a perfect start!

Like previous models these “made for iPhone” smart hearing aids still have the ability to connect the dots between all my accessibility tools - the sound quality streaming has improved making listening to music and taking phone calls so much easier and more enjoyable.  I’ve experienced a new kind of sound quality, familiar voices have a different sound, I guess I’d describe as more of a richness, I’m picking up on things like expression of sound, sarcasm, exaggeration, pitch, those sort of things, things I’d never really realised I’d missed!

I love music, all sorts of music and since wearing LiNXQuattro I’ve begun listening more carefully and can pick out different instruments rather than just listening to words - before GN hearing aids I couldn’t decipher either.  I used to make up the words and think what I heard was how it was, WRONG.  Actually hearing was hard work and I’d rely on visual clues like lip reading and gestures, those days long gone along with my sight, how grateful I am to GN Hearing that I’m more than coping without visual clues.

I tend to use FaceTime to communicate with my friends, they seem to prefer it, not that they are deaf or deafblind, they just seem to be enjoy it more.  I can still just about make out their faces, but that said most important to me is the direct stream of sound whilst doing other things (I’ll often rest my phone against something while I’m busy) I can walk around the room and keep busy and talk with my friends as if they are in the room - I’ve never been so productive whilst on the phone before! 

The quality and clarity of sound has meant I don’t mishear very often, as a result I feel very confident in conversation not just with friends but with clients on the phone. I can still hear things around me like kettle, the microwave, the toaster - whilst on the phone. 

I have often rung my Mum for instructions on something or the other and put the phone down while concentrating on those. The hearing aids feel like an extension of me, they allow me to do more than ever before.

I continue to enjoy the independence to swap and change settings in the changing environments I find myself in.  Also to save hearing aid settings for places I visit regularly, it’s also pretty cool that the hearing aids remember settings for saved places.

I’m enjoying life with my rechargeable LiNXQuattro, that “Fresh Battery” feel, the rich way I’m experiencing sound, the seamless direct streaming is priceless, totally enabling.

My work involves lots of speaking and lots of listening at Q&A time which at one time I’d feel a little anxious about but not any more, my ability to access sound and to feel inclusive has had a massive impact on my everyday life, I’m anything but that poor deafblind girl sat in the corner. 

My confidence and independence is at an all time high and yes, I rely totally on assistive technology to live my life and of course, rely on my Guidedog for keeping me safe but it has to be said my smart hearing aids are without a doubt the “LiNX to everything”

I’d like to comment on the remote hearing aid repair but accept to say it’s an amazing as my LiNXQuattro are yet to let me down and judging by my previous GN smart hearing aids besides the odd tweak in the early days completely problem free, perfect performance.

 

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