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Hello everyone, hope you are all doing okay during these unusual times. Some of you may know me and some not, so let me introduce myself.

My name is Olivia Morton, and I am 15 years old and I’m living with this rare genetic disease called Usher Syndrome. I was diagnosed with Usher Syndrome at 13 and let's just say it’s been a rollercoaster of emotions, many highs and many lows but the best way to deal with this type of thing is to just take every day as you can! And most importantly NEVER GIVE UP!  So, there’s a little introduction about myself and now let’s get onto why I am writing this post. 

I have been on an incredible journey with the Molly Watt Trust, and I feel so privileged to have met Molly and her mum,  as a result of which I was chosen to be a part of an exciting project resulting in me being referred to Correct Hearing, audiologists based in Nottingham where I met a lovely audiologist called Sarah Vokes who assessed me and then fitted me with the most amazing hearing aids called Resound Linx Quattro. They are soooo good, they’ve helped me loads over the last few months especially with school and home schooling. As you may have notice from the title of this post, I am going to talk to you about how my hearing aids are helping me with school/home school learning. I am in Year 11 of school and that is the last year of proper school, so I am feeling all the emotions at the minute! Especially since it is my last year and instead of actually being at school, I'm doing school at home due to Covid.  Having to do online lessons through teams, brought me additional anxieties, I was very nervous that I wouldn’t be able to hear the teachers as much due to using my iPad and phone. However, thanks to my new Resound Linx Quattro’s, homeschooling has been amazing, I can hear the teachers really well during zoom meetings. I know straight away what the teachers want me to do. I can connect my new hearing aids to my phone or any other device through Bluetooth which is one of my favourite things, direct streaming! I’M SOOOO THANKFUL FOR THIS! All teachers and student’s voices stream straight into my ears and it feels like I'm back into the classrooms which is just incredible. Even if I don’t use Bluetooth, I can turn my hearing aids up and down using my Resound app on my phone, this is a massive help because if I feel like the teachers are talking quietly or loudly, I can turn my hearing aids up and down without any hassle. Thanks to these hearing aids, I have been able to learn at home effectively without any disadvantages. 

When I got my hearing aids, I also had the privileged of getting a radio mic which is what I get the teachers to wear when I’m at school, so I can hear them more than the students in the classroom and its terrific! In around December time in 2020, I had to do all my mocks and one of the subjects I choose was Spanish; I had to do a listening exam and at the time I was thinking OMG I'm going to fail because I do struggle with listening tasks especially when they’re in Spanish. However, thanks to my radio mic, the teacher was allowed to wear it and they spoke it out to me through the radio mic and I could hear everything the teacher said straight away. This was just amazing, and I couldn’t believe how much this radio mic helped! I am very grateful that I received both the hearing aids and the radio mic because it has made my life so much easier at school and during home school learning. 

I was also grateful to be awarded student of the month for November last year, which proves my determination in lockdown to keep my studies high. 

There we go, that’s my post about how my Resound Quattro hearing aids have helped me during my school hours.

I just want to say a massive thank you to the Molly Watt Watt Trust to GN Hearing and to Sarah at Correct Hearing.

Hi folks I hope you are all well and keeping your spirits up.

I thought I’d write an update on my experience wearing Linx Quattro hearing aids from Gn Resound for just over a year. Donated by the Molly Watt Trust in collaboration with GN Hearing and The Hearing Clinic, Glasgow.

I was the first person to be asked to take part in a very important and necessary project to acknowledge the real hearing aid need, over and above deafness alone for those living with deafblindness.   I have Usher Syndrome type 3 which is incredibly challenging.

I am now living with a severe to profound hearing loss and around just 3 degrees of central vision, no peripheral vision and total night blindness. 

Usher Type 3 is different from both Type 1 and Type 2 and the rarest, it really hits home later in life. 

I went through my teenage years ok but noticed something with my vision was wrong at around 21 years old.  I’m sure you’ll appreciate I only see through my eyes and presumed nobody sees in the dark, I didn’t have any idea I couldn’t see because I had a condition causing night blindness! 

My deafness came later. 

I remember at about 28 years old I applied for a very good job at a nuclear plant working in the turbine hall . There was over 800 applicants and I was told the job was mine, however, after a medical I was told I had failed due to my hearing loss. You could’ve knocked me down with a feather! 

So back to reality it was one of the many kicks in the teeth that people with Usher often deal with!

I progressed with life, had to work really hard even set up a couple of  businesses along the way but at the age of 45 I reluctantly had to admit defeat.  By now my eye sight so bad I couldn’t even find my way to the bus stop on a winters night!

I applied for a guide dog and got the result to my genetic testing which took a while but came back that I have Usher Syndrome Type 3, I was at this time told I needed a hearing check up!   My hearing quickly went down hill from mild to moderate to severe now I’m tipping severe to profound. 

To date there is nothing that can enhance my blindness accept to use assistive technology where I can, however options for the deaf or blind don’t always fit for deafblind people, all too often we have to muddle through either as a blind person person with deafness of a deaf person living blindness rather than seeing the bigger picture!

I’ve found in my experience I need to continuously adjust and try to stay ahead of the curve just to live my life. I’ve gone from cane to guide dog to specialised wrap around glasses to multiple hearing aid types. 

So why is the very best available access to sound so important to somebody deafblind like myself? 

Enablement to access sound, not just to hear but to hear so well you can rely on your hearing to keep you safe and inclusive. 

Struggling to get by isn’t ok when there is tech to make life so much more doable.

I feel very privileged to be the first person chosen as part of an important and, excuse the pun ‘eye opening’ project being run by the Molly Watt Trust with the support of GN Hearing and in my case The Hearing Clinic, Glasgow.

The project is to demonstrate the additional challenges of people deafblind over and above deaf or blind and the absolute need for us to access the very best in hearing aid technology.

Molly Watt Trust collaborated with GN Hearing and Chris Stone at The Hearing Clinic to enable me to be fitted with Resound LinxQuattro smart hearing aids. 

The day I was fitted with my hearing aids I learnt more about my hearing than I had ever learnt in my years of wearing hearing aids and to say I was blown away by my initial experiences of sound really is an understatement and here I an a year on and life has never sounded or been better even through this awful pandemic.

I have blogged about my experiences but been quiet as little happening with the many lockdowns that have been in place however what I have done is take the time to reflect on what smart hearing gives me.

I can now hear traffic when I’m out with my guide dog, I hear 360 degrees around me which when you consider I only have 3 degrees of central vision.  To say my hearing compensates for my blindness, I think the numbers say it all!

I feel safe, my confidence and ability to get around hugely enhanced.

Throughout lockdown I’ve been out every day rain hail or shine on many walks, fully  appreciating the noises of nature, the different birds singing.  It’s also the simple things too like listening to songs or being able to hear a mobile phone conversation. 

I am one of many people who really need the very best in smart hearing aid technology which is why they need to be made available to the deafblind community.

Unfortunately at this time Resound Linx Quattro are not available on the NHS which is madness when considering the positives they bring to my relatively small community 

Yes they appear expensive initially however when you look further ahead - enablement to get out and about without fear of danger, when you’re able to work, access telephone calls, be inclusive, live your life and not feel the isolation often attached to Usher Syndrome and all the problems attached to it of which mental health is often a big part.  When you consider these things are these hearing aids really so expensive?  I think they would save huge amounts in financial support for many.  Financial independence is beneficial to all.

Over the years I have spoken with numerous audiologists who see best available hearing aid tech as the best option for me as they will enhance my hearing for as long as is possible, and in doing so compensate a little for my blindness until the possibility that I may require cochlear implants, something I hope doesn’t become necessary, however should it become my only option the NHS would fund this at a cost exceeding £50k plus and yet won’t provide top quality hearing aids at a fraction of the cost - WHY?

Please help us on our quest if we don’t shout out we will not be heard!

If you want to help or make a donation so someone else could get the amazing benefit of these wonderful hearing aids which do change life’s take it from me as I know, then please contact www.molly-watt-trust.org

Together we will change life’s for the better. 

For now I’m thankful to the Molly Watt Trust, GN Hearing and The Hearing Clinic and hopeful Molly Watt Trust can continue to work with GN Hearing and help others like myself.

 

 

 

 

Friday, 20 November 2020 14:31

The Colour Palette of Hearing - Resound One

Ok so finally I can write my first Resound One review.

On 3 September I was fitted with my new hearing aids.  For me it always takes a good few weeks for my brain to embrace new hearing aids.

As many of you will know I have been on a smart hearing aid journey with GN Hearing for over 5 years now.

In that 5 years I have experienced a revolution in hearing and sound enablement that has changed my life.

As I’ve waved goodbye to most of my useful sight I have benefitted from the invaluable gift of sound. 

As a creative person I’d describe hearing with Resound One like peeling an onion, the more you peel the deeper you go and the more you might cry but tears of happiness and the artistic person in me describes the experience as hearing in colours, just about the entire colour palette.

Resound Ones together with the ability the app provides for change/variation in different environments have provided a new clarity in layers of sound. 

A good example of this would be a noisy outside environment (in other words a nightmare situation for a deaf person, even worse for somebody deafblind) - there is ongoing building work near where I live, lots of drilling, banging, thumping sounds and yes I can identify those sounds now, something I would never have identified some years ago, I can now thankfully hear all that racket as background noise and on walking past I can hear builders chatting and I know from what direction those voices are coming but I cannot see the builders - they swear a lot!

When I walk with my guidedog at night I am very comforted and feel safer knowing I can hear what is going on around me as I cannot see a thing, the joys of Usher Syndrome.

It’s been a strange year for us all but I have taken the time through the first  lockdown to really appreciate the gift of hearing, this was with LiNXQuattro.  Closing my eyes in the summertime I experienced silence, only interrupted by bird song, I was surprised to realise all birds sound different, yes I know, it took me until I was 26 years old to appreciate that!

More recently I was struggling with a migraine, usually I’d retreat for peace and quiet and remove my hearing aids, on this occasion I laid on my bed listening to the rain fall and the wind whistling around outside my window, it was so peaceful, one of the most relaxing things I’d heard, quite therapeutic and unbelievably for me I fell asleep wearing my Resound One hearing aids, I never ever sleep in my hearing aids but just shows what I’m getting from them.  Silence when I need it, relaxation when I need it and excellent amplification when I need it.  To add to that experience when I woke up the next morning my hearing aids still had enough charge to see me through the rest of the day which really is quite amazing.  I cannot tell you how relieved I am to not have to faff around with tiny batteries, anybody living with Usher Syndrome will tell you how challenging they are having little useful vision.

Another thing I have really appreciated now more than ever is that having access to speech and sound has enabled me to continue working remotely.  I hear well so well via Bluetooth connection to the various enabling assistive tech I am totally reliant on daily.

It is still early days for me with Resound One smart hearing but I’m sure as life returns to some sort of normality more benefits will emerge, but for now I shall enjoy each and every colour of hearing possible.

 

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.

 

Friday, 13 December 2019 08:26

Sound Sound So Good

I have now been wearing my smart hearing aids for over 2 months. 

I’ve had a few issues, more relating to myself than the hearing aids.  Firstly it would seem I have very waxy ears, as a result I did need to visit the audiologist to discuss this as it did affect the microphone.  A good clean and some adaptations helped.

I am very into enabling gadgets and very creative in getting things to work for me so understanding what will and what won’t work with my hearing aids has been of interest to me alongside appreciating the new sounds I am now fortunate to hear.

I have invested in a television that has bluetooth so will be interested in seeing if I can connect my hearing aids to it once it is set up.

I also have some new speakers which work alongside the tv and am really enjoying hearing music via these for the first time.  I can identify different instruments playing and lyrics which is fantastic.

GN do something called a multi mic which I believe would connect to the television if my aids do not connect directly.

My confidence has grown since wearing my new smart hearing aids, hearing when deafblind is so important to safety. 

My wife Lyn and I recently travelled to Banff, Inverness to visit family, a fair journey for us.  Lyn’s guide dog had to retire recently so it was the two of us and Franky my guide dog who I have only had a short time.  We travelled safely and confidently.

It is a journey we have done quite a few times so quite familiar with the route, however, the one thing really different for me this time was the accent, I was able to pick up the difference, some very pronounced letters and words which was brilliant.  Deaf people will always struggle with varying accents so I was really pleased, I’m sure I will be picking up more ‘Doric’ language skills going forward. 

I cannot believe just how much more involved I feel now I am able to hear so much better. 

Strangely I hadn’t realised just how much I was missing out on and how isolated I had become until now.

Being able to hear and to connect and directly stream sound really is life changing and I feel that as time goes by I really will be picking up more and more.

I am really loving the fact that “Sound sound so good”

Wednesday, 21 June 2017 09:48

Emotion and Music to my Ears

I have had some additional personal challenges recently with the reality that my first trusty and gorgeous guide dog Unis is retiring early and that I will continue my journey with the beautiful young Isabella.

Isabella will never replace Unis, just take me on as her big challenge!

It is hard to describe the mixed emotions this new scenario has put on me. Other guide dog owner friends who've shared so much with their four legged friend will understand the pain and I am so grateful of the support from the many friends I have as a result of having Usher Syndrome and a guide dog, you know who you are and I so appreciate your recent support.

I had to switch off and be on my own to untangle myself from what I can only describe as a kind of grieving for Unis, feeling so grateful to her for being at my side through thick and thin and the elation that Isabella will give me back the independence I have struggled with over the past year as Uni's anxiety worsened hence her early retirement.

I needed that time on my own to think and get my head around things.  What this has often meant to me is taking out my hearing aids and having silence, a sweet and peaceful silence that many deaf people enjoy and will identify with.  To literally switch off, to take time to think without interruption, however, strangely this time I didn't want that silence, I wanted music!

It dawned on me then that I am hearing music, and particularly lyrics better than ever before.  

Streaming music directly from iPhone to ReSound LiNX3D is absolutely amazing.  Music can change and make moods. It makes me happy or sad, it can make me cry, it can motivate, it can be uplifting and often all emotions in one song it dawned on me music was exactly the tonic I needed, not silence.

Music has been my saviour over this rough patch.  I have always enjoyed music but have never listened to the lyrics like I do now.  I can hear through the music to the words, previously it was sounds, rhythms and often vibrations, it didn't bother me as I simply enjoyed music, I just didn't realise how powerful words can be.

I actually lost myself in lyrics thinking about Unis and Isabella and moving forward with my life and it has definitely helped me with the transition I'm facing.

Music is of the moment, songs I enjoyed in the past but hadn't really listened to the lyrics or made up my own became meaningful of my situation and strangely the various songs I listened to could be taken as happy or sad, needless to say I cried and laughed my way through quite a few playlists.

I can't say I like one genre of music, I like so many different things.  

Music reminds me of certain people, of times and places, of happy and sad times.

I looked over my playlists and relived back to when I spent time with my grandparents when I was little, back then I had analogue and early digital hearing aids.  I sang to my favourite tunes not even realising I was making up the words, I sang how I heard the words.  Not any more, I hear the lyrics clearly and I sing - apparently my singing hasn't improved, however, I'm singing the correct words.

Some of the amazing holidays and working trips I've enjoyed, the things I could see back then but now I'm reliving things based on what I'm hearing.

I could name lots of songs with lyrics I find particularly powerful and healing but will just name a couple.  The first ironically is music first heard at my grandparents house and back then the words had no relevance to me but now mean so much, ‘Something inside so strong’ by Labi Siffre https://youtu.be/PcKoYGNj0BU and the second with real meaning and a song my Mum often plays in her car,  Lean on Me’ by Bill Withers https://youtu.be/N5jlPL1tNDY this music is not music I hear anywhere else but with family and I guess for that reason it fills me with warmth.

My hearing using ReSound LiNX3D sets a scene my eyes no longer provide,  I have no idea how I would be coping today without this unbelievable technology it has truly enhanced my life, given me confidence and connected me to new things.

Being able to hear so clearly is priceless.  

My blindness often means I'm relying on my hearing to see things, to locate things and now to relive things. Directional sound and spatial awareness together with crystal clear hearing and exceptional connectivity has enabled me to compensate where my sight fails and to be as inclusive as is possible living with deafblindness.

If you can imagine your eyes closed or in complete darkness you will appreciate the importance of hearing for somebody living with Usher Syndrome (deafblindness) it isn't easy, however I have accepted where I am at, there is no doubt I grieve for perfect sight at difficult times but nowhere near as much as I used to.

I was blessed to have had my beautiful black beauty Unis and now the beautiful black cutie Isabella who will continue the great work I enjoyed from Unis.

This emotional journey has been lived through based on sound and hearing and again I feel lucky to have the ReSound LiNX3D smart hearing aid technology to help me find my way.

For the last two years I have raved about ReSound LiNX² smart hearing aids and rightly so, they literally changed my life.

I would be lying if I didn't say "REALLY" when I initially read about ReSound LiNX3D, however, I absolutely wanted to try them.

Anybody familiar with hearing aids knows that whilst a new pair can offer more long term the initial few weeks/months are not fun.

It is key that people understand that a new pair of hearing aids are not an instant fix.  With every new pair of hearing aids - unlike the cochlea implant there is not a ‘switch on’ and you hear new sounds process.  Most with hearing aids have experienced sound before, unlike many profoundly deaf and hence the differences in "siwitch on/adjustment."  With hearing aids the brain and nerves literally work hard to process new sounds and it is both mentally and physically exhausting. I often have to explain to people the reason I am not hearing as well as before (with previous hearing aids) in the first few weeks is because my brain is in a state of confusion to sounds, kind of re-programming itself all over again. 

As someone with such restricted vision and somebody who has benfitted enormously from LiNX² I did feel really quite anxious about trying ReSound LiNX3D, probably more anxious than previously however I absolutely wanted my chance to experience the very latest smart hearing aid technology.

I knew I would have to deal with some very challenging weeks whilst adjusting to the new hearing aids and that the confusion they often cause makes me feel more deaf than normal however the benefits do far outweigh this once the brain adjusts.  A time to be very patient.

Picking up new and unfamiliar sounds are initially confusing and often hard to make sense of whilst the familiar sounds no longer sound familiar.  The brain seems confused and in a state of learning and it can be very tiring, frustrating and annoying all at once on top of which it can be hard to have patience throughout this period of time.  

Even before being fitted with LiNX² I remember feeling hope that these new smart hearing aids could make a real difference to my life.  I desperately wanted them to work, to give me something more then my NHS hearing aids.  Could something really be available in any way shape or form to really enhance my hearing and in any way compensate for my failing sight? 

I remember the early days of LiNX² the whole "getting used to" process. Almost bizarrely I could immediately sense a new clarity in sounds that I found strange but exciting.  

Amongst the confusion of the many new sounds I was experiencing for the first time in my life there were sounds that initially sounded like interference in my ear, a process of elimination by the three audiologist present revealed I was hearing sounds from outside of the room I was sitting in!  I had never experienced that before, hadn't as much as considered it an option, yes, up until I was almost 21 years old I had not thought this was even possible - how much had I really missed out on over the years? 

Also although the sounds were kind of coming at me at all angles I could for the first time follow a sound around the room.  It made me feel quite dizzy but also fascinated.  

The first month was a journey of emotion and discovery.  Slowly I discovered so many new things, the voices of my loved ones sounded so different, so much clearer.  The LiNX² connectivity to my iPhone and applewatch, the app enabled me to experiment with my hearing, adjusting bass and treble and also adjusting the smart aid capabilities in different environments it really was unbelievable.  As a result of me being able to adjust my hearing aids as appropriate to my environment I discovered how much better my access to sound really was.  I discovered 'hearsay and earwigging'. I sat on a train hearing the noise of the train but over and above that sound I could hear people speaking clearly even though I couldn't see them, I knew they were sitting behind me.  It was both fascinating and strange in those early days.  

I could now speak and hear clearly on my iPhone as sound streamed directly to my ears, I  could hear things I had never heard before.

Those difficult, exhausting days of constantly scanning to find sound gone I felt connected to people even though I couldn't necessarily see them.  Ask any deaf person how important sight is to their very being and you'll understand just how huge these things are.

I could write so much about these amazing smart hearing aids however I have written extensively about my LiNX² already and most blogs can be found at www.molly-watt-trust.org this one is my personal favourite: http://www.molly-watt-trust.org/component/k2/bali-sound-sensations

So, in April of this year I was humbled and flattered to be one of the first in the UK to trial the very latest in ReSound's smart hearing aid technology, ReSound LiNX3D, Whilst I was excited I was also apprehensive as to what more these hearing aids could offer, which shows just how happy I have been with my LiNX².

Whilst waiting on my fitting I had time to do my own research and the more I researched the more exciting ReSound LiNX3D became, however, I was not looking forward to that first month of aural confusion especially as my work agenda is now quite taxing.  There would be no quiet time to aclimatise myself to new hearing aids this time!

Since wearing LiNX² my confidence and ability to work independently has led me to, with a little help, set up my own business as well as work tirelessly for my charity and championing accessibility and inclusivity for all.

My Dad took me for my first fitting of ReSound LiNX3D.  Being deafblind mobility is another of the extra challenges I have to deal with.  I was excited and curious to experience the many things I had read - could they really be as superior to LiNX² as I had read?

I was being fitted by a friendly familiar face at ReSound so I felt very comfortable.

The fitting did not pan out the way I thought it would.  The first thing we established from an up to date hearing test was that my hearing had worsened, not a lot but every single decibel of loss can be multiplied over and over for somebody deafblind.  I put on a brave face on the day but deep down I felt myself grieving for that loss.  My ability to hear is what keeps me inclusive in a world that is more often dark than light these days.

I was hoping for so much from ReSound LiNX3D after my experience of ReSound LiNX² and after that bad news I was desperate for them to offer more to compensate for the added hearing loss.

The fitting went well and I could immediately hear differences and as exciting as it was I felt a touch deflated, such mixed emotions.  

I had an emotional couple of days coming to terms with the fact my hearing loss had deteriorated however after allowing myself time and with the support of my family and friends I soon pulled myself together and started to enjoy experimenting with my ReSound LiNX3D.  My life is full of challenge, this is just another one and totally doable.

Almost immediately I began experiencing new sounds and they seemed louder than the old sounds, it felt like my brain was working overtime to make sense of them, it really was hard work but the belief that once everything settled I would experience more positives than negatives even with more of a hearing loss gave me hope.

Never one to stay down for too long I immersed myself into work wearing ReSound LiNX3D.  

ReSound LiNX3D come with a new app, the new app offers much more than the one for LiNX² so more to learn, more to experiment with, exciting.

This app, like with LiNX² smart hearing aids bluetooth connect automatically once paired to both iPhone and applewatch. Like the now previous app my most frequently used programmes were there: ‘All around,’ ‘Restaurant’ and ‘Outdoor’I found the familiarity comforting. Knowing the three programmes I use most are on the new app for me to use and alter accordingly to enable me to hear to the best of my ability.  The new app has bass, treble, volume settings and newly added, further wind reduction settings on each programme, an inbetween bass and treble, a ‘Middle,’ setting that almost balances out both bass and treble when in an environment with poor acoustics.

The format of these settings has changed slightly and is now in graph form - using your finger tips you can fiddle around with ease to find the settings that suit you best.  However, the icing on the cake really has to be the ‘Request Assistance’ option. 

What does this mean? 

I can now simply, request assistance using the app on my iPhone wherever I am.  The benefits of this are enormous.  Besides the fact I have the assistance of my audiologist pretty much at my fingertips any time and any place I may be.  I no longer have to make an appointment to see an audiologist which can be several weeks away and for me at a clinic very hard to reach by public transport. 

For deafblind people like myself mobility is challenging at the best of times but the thought of having to attend an audiology clinic with broken hearing aids some weeks later is not acceptable but something those with dual sensory impairment have to endure on occasion.

The reassurance I now have from "Request Assistance" via the app on my iPhone is truly priceless.  Now if I am away working, which is often the case and for any reason I have any issue or concern with my hearing aids I can fill in a short but thorough questionnaire to set out my concerns  (ie: which programme, which setting, which ear, how annoying etc etc) I can also fill in a personal message to specify my issues and this is sent direct to my audiologist who will pick it up and respond as soon as possible.

My first two and a half weeks with LiNX3D were for me more challenging than my first experiences of LiNX² I think besides the usual "getting accustomed to" period I was very busy with work so challenged in varying environments and wasn't used to hearing aids or the app as a result I did struggle more so contacted my audiologist who insisted he check my hearing aid settings.

A short follow up visit to my office and a check of my previous programme for LiNX² with a comparison of my new programme with LiNX3D resulted in a small tweak which appeared to literally be a few taps on a computer then almost by magic my hearing aids came to life.

Sat in the office concentrating hard on my audiologist all of a sudden became less intense as I could hear him without any problem.  I also became very aware of the clicking of a computer keyboard behind me and I could hear the familiar sound of the printer printing to my left and also the gurgling sound of the water cooler beside me - this is more like it I thought.

I remember having a similar check with my LiNX² 3/4 weeks on and a few little changes making a big difference so perhaps normal to need that follow up.  

I think changing to ReSound LiNX3D from LiNX² I felt more educated as to what could be achieved and so more aware of any problem, either way, I was sorted.

I left the office that day with guide dog Unis, I could not just feel her body close to me but I could hear the clinking of her lead and collar and her paws on the pavement beside me, I could also hear birds twittering on the roofs above me, I could hear the sounds of cars to my right and behind me.  As I walked through the town I could hear voices, different voices, men, women and children. As I passed the coffee shop I could hear people talking and the sound of crockery, I couldn't see any of it as I walked looking straight ahead allowing Unis to do her job.  It was amazing to be able to understand my familiar environment because of my hearing.  The depth, quality and clarity of sound LiNX3D provide is incredible.  As I passed the bakery I could smell fresh bread and to the side of the bakery is a bus stop, I could hear voices, clearly people waiting for a late bus.  My walk home from the office was as though I was seeing new pictures in sound.  Sounds coming from all around me and the beauty really was I could decipher the sounds and where they were coming from - my new journey of discovery had begun.

Some other positives are the clarity of speech streamed via iPhone and also music has much more depth than previously.  I'm enjoying hearing music, lyrics and new sounds, I've discovered the sounds of different instruments that I'd never heard before, now just to educate myself on exactly what those instruments are!

I have since experimented with ‘request assistance,’ because of course if you have an issue - you send the message what happens next? 

Well after sending a request a week or so after I had seen the audiologist with a minor concern, I received a response. 

Here is the absolute "creme de la creme" my audiologist sends back an up to date programme for me to install. Clear instructions display on my screen: ‘Take out hearing aids, leave them on and leave near phone,’ and the programme re-installs onto the hearing aids with the necessary adjustments made by my audiologist externally.  I could be in America or Australia in fact any country with wifi and have both assistance and solutions made via my iPhone.  This service is second to known and truly priceless.

It is possible to restart programmes and request further assistance if necessary.

There are two relatively small negatives for me at this point, both of which could be perfected.  Firstly the writing within the app is hard for me to access at times, lots of white backgrounds and fine print - this is very challenging with tired visually impaired eyes, would love to see an improvement here, good contrasts and dynamic text would be perfect. 

Also it would be great to receive an instant response from the audiologist to confirm my request for assistance had been received rather than me keep checking the app which did get very tiring.  Besides that, I have been totally impressed.

I have now been wearing ReSound LiNX3D for around 5 weeks and I feel the initial "brain strain" and confusion is over and I'm now enjoying the benefits of this incredible smart hearing aid technology.  

I am able to use the app on both iPhone and applewatch to adjust my ability to hear in every different environment I might find myself in.  

I loved my LiNX², they offered me more than I could ever have believed possible however I can now report ReSound LiNX3D have exceeded my expectations and not just because of the ground breaking "Request Assistance" but because this smart hearing aid is providing much improved clarity of speech, crystal clear in fact, also improved connectivity provides excellent access to all number of iPhone apps audibly.  My days of not hearing or mishearing are very much a thing of the past.  

I was diagnosed with Usher Syndrome almost 11 years ago - born severely deaf I have now been registered blind 9 years and whilst like everybody with this cruel condition I hope for a cure however, I am not hung up on finding a cure, I want to live my life positively and thanks to ReSound this is possible.  

I am excited for the future because this incredible assistive technology keeps evolving and enables me to be an inclusive part of society.  I simply want this for all living with the challenges of deafblindness.

 

We met a lovely lady from Northern Ireland at a Molly Watt Trust ‘In it Together’ event in Edinburgh in October 2015, she has been a hearing aid user since she was 4 years old and was managing very well.

At that particular event we were very fortunate to have a presentation from GN ReSound’s Graham Roberts who was able to share with us the many impressive hearing aids and products available from the supplier.  

That presentation together with Molly’s in depth and ongoing testimony of her GN ReSound LiNX² and how they have enhanced and enabled her life led to an influx of enquiries about how and why these enabling smart aids are not available to those living with Usher Syndrome (deafblindness), particularly as they offer far more than most hearing aids provided by the NHS.

It is fair to say everybody at that event, particularly those using hearing aids where very interested in the enablement smart hearing aids can provide.

Molly coped with standard Phonak hearing aids provided by the NHS until she was 20 years old, however, from 14 years old when she became registered blind, deafblind she struggled and the reason for this in the main was because of her blindness.

For 6 years Molly insisted her hearing had deteriorated even though test after test showed her hearing, thankfully remained stable.  

In actual fact what had happened was her ability to lipread, to use facial expression and body language had gone along with her sight, her ability to access sound and communicate had dwindled, demonstrating just how much the deaf rely on their eyes to hear.  In other words she could no longer ‘fill in the gaps’ that her eyes had enabled.  

It is a fact that the deaf hear with their eyes.

GN ReSound LiNX² provide a hearing experience those who have experienced really benefit from.  They provide an incredible clarity of hearing, they enable directional sound meaning that whilst Molly is blind she can now turn towards a sound, something she could not do with her NHS provided Phonak hearing aids, she can also identify not just where sounds are coming from but most importantly she knows the sounds of danger - just imagine how important that is to safety for the deafblind.

These hearing aids have incredible bluetooth connectivity to iPhone and applewatch, also android devices giving the ability to many deafblind to access aurally things they could only dream of previously.  Using a telephone as a telephone for the first time ever is most certainly a huge positive.

Not only can they be adjusted be independently adjusted but enable a very personal hearing experience and in so doing bring great confidence and independence.

Our friend from North Ireland was one of many desperate to have access to GN ReSound LiNX² and indeed has asked her NHS audiology department, their response was somewhat bizarre - an appointment with the Cochlear Implant Clinic!

Cochlear implant is amazing technology for the deaf, however, not only is it not for everybody it is also incredibly intrusive, expensive and most importantly not what the patient wants why not consider more enabling hearing aids which happen to be a fraction of the cost. 

Figures suggest the cost of 1 cochlear implant would be close to the cost of 10 pairs of best quality smart hearing aids!

There are lots of people who have been hearing aid wearers a long time and like Molly have gotten on very well with them but now need more as Usher Syndrome/ blindness looms close.

GN ReSound have a variety of hearing aids including the ENZO2 for those with a profound hearing loss and whilst they are the creme de la creme of smart hearing aid technology their cost in comparison to cochlear implant is very reasonable.

Cochlear implant involves surgery, it is considered that deafblind people should have two implants to enable directional sound for safety and rightly so,  directional hearing is a must for the deafblind, safety is imperative for all, whatever hearing aids worn. 

Most get one implant at a time so often two surgeries after each substantial aftercare and rehab at huge cost.  

I’m not saying this shouldn't be the case, of course it should where appropriate, however not every deafblind person wants such invasive surgery preferring an alternate option.

Patients should always have a say in their care as it tends to be them who are the real professionals and who will have done the research based on their condition.

I know there is a long and in depth assessment for cochlear implant and so there should be but surely every patient’s individual requirements should be considered?

My friend in Northern Ireland was told there is a 3 year waiting list is this acceptable?  Why not consider best hearing aid options?

We continuously hear that our NHS remains financially fragile, that it needs more funding but very rarely do we hear about solutions, about genuine savings that do not include reducing staff - surely this scenario has to be seriously considered

I would like to say our friend in Northern Ireland’s scenario is unique but sadly it is not!

Tuesday, 02 February 2016 15:05

Applewatch Accessibility and Connectivity

To quickly introduce myself, am Colin and I have Usher Syndrome type 3, the rarest of the Usher types.  

I recently received a letter to collect a package from the post office, pretty handy for me as its right beside the train station and I was on my way to Glasgow . 

I picked up the parcel and signed for it or should I say the postmaster did, very kind of him as he had spotted Jason my guide dog . 

I was very inquisitive as to what could be in that box and was wishing for the train to hurry up so I could open my parcel.

The train approached and I was on my way  another two hour journey to Glasgow, however, this time it was going to be a very exciting journey that would fly by!

As I opened the box I realised it was an applewatch.

I had applied to The Molly Watt Trust for an applewatch after reading about their current project https://www.globalgiving.org/projects/deafblind-need-access-to-life-enhancing-technology/ which came about as a result of Molly's outstanding blog showing just how enabling the watch can be to people with Usher Syndrome.

I am delighted to have received an applewatch from This project, I had admired the watch in my local Apple Store on numerous occasions after reading Molly's blog but couldn't afford to buy one.

My first impressions, very smart in black and very very stylish.

Fortunately I had my battery pack on me so figured out how to charge the watch with the magnet on the back of the watch - very clever and simple, I was impressed already.

I switched on and paired it with my iPhone very very quickly by following the simple steps and scanning my watch with my phone.

I then went on a magical journey sussing out the basics of the applewatch.

Apple products are brilliant, particularly their accessibility features, but are very expensive.

As I began to play and find out more and paired my Apps I realised not all apps swapped over from my phone as not all are applewatch compatible, hopefully more and more will be going forward, but I'm still very impressed.

I was struggling with the concept of how an earth can I zoom in but I am getting to grips with the zoom feature.

I was also excited to pair it with my Phonak ComPilot today so I can answer calls on my applewatch and hear audible apps via the watch rather than just my iPhone to my hearing aids.

The first day I found it a minefield of new and exciting features but very similar to the iPhone in many ways but I seriously can't wait to find out more about this incredibly useful, deafblind friendly piece of kit. Here's to day 2

Day 2 was very interesting as I found out I could change the clock face so for now it's Mickey Mouse.  I love the way you can change the style for every occasion . 

Also looking at the strap yet again you can tell someone has spent a lot of time thinking of a different solution to hide the strap by tucking it behind, nice touch . 

Yesterday's mission was to pair my Bluetooth hearing aids to my Phonak compilation neck loop this I did with a varying degree of success and drained the battery quickly as searching for Bluetooth devices generally does.  The end result was it works on music through my hearing aids but not on the phone perhaps I've got a setting wrong along the line.

Also playing with the applephone last night I realised all the watch settings are on the iPhone watch app so today I will dig deeper. 

Overall view for day 2 frustrated about hearing aid connection to applewatch but sure there must be a way to overcome this, on the plus side clarity is very very good.

I cannot get over how stylish it actually is and I need to find out so much more.

iPhone is not rocket science but a form of sequences just like all Apple products I just need to get used to where everything is.

Yesterday I thought I made huge progress as I set up a route and followed it to the letter. 

I set it up on maps on my iPhone then experienced the taps on the wrist to indicate right or left sounds like an indicator on the car, this is brilliant.

I also found loads more apps like a money converter calculator speedometer also city tours very handy on a city break.  I even managed to put voiceover on and put my screen lock on at the same time also my screen locked out which threw me out a bit! I got a friend to google this and soon put it right.

I got somebody to google how to sort it out and sorted it out on my iPhone, it's easy just go to the App. 

I can honestly say like all Apple products the more its used the better it is . 

I'm still learning and loving my new applewatch.

I find the Taptic feature on maps a godsend, being deafblind getting lost is easy, however, so far maps have been brilliant I'm getting from a to be with ease and accuracy.

I also like the gimmicks like charging the applewatch sideways and how  it turns in to a digital clock, very nice touch. 

Also been playing with lots of accessible new apps, the only problem, irritation is trying to get my Phonak hearing aids and neck loop to stream from my applewatch!

I notice Molly Watt uses ReSound Linx2 hearing aids which have full connectivity to all apple products so hopefully there is a way with Phonak, fingers crossed, I will keep tinkering.

 

 

Monday, 23 November 2015 19:28

A "Resounding" Success

When I wrote my Applewatch blog back in April this year, I had no idea of the interest it would generate, nor the amazing people or companies it would lead me to.

I felt so proud that my blog led to many people with Usher Syndrome, deafblind, blind or deaf considering buying the Applewatch and also so many that have bought it and like me enjoy it's fantastic features.

Thank you to all who have sent me such positive feedback.

I was shocked by the interest from all around the world and flattered by the amount of media interest and the many who contacted me direct, curious about Usher Syndrome and accessibility.

However, for me personally it brought something very special, a company full of fantastic people and a product that together with my Applewatch and iPhone has completely changed my life, Linx2.

GN ReSound came into my life as a result of my Applewatch blog.  Until then I had never heard of the company and knew nothing of their amazing Linx2 hearing aids.

For me they came to life on Twitter, I saw their advert advertising the Linx2 to be fully compatible and connective to both iPhone and Applewatch.

I researched further and, I guess as they say the rest is history.

Being fitted with the Linx2 my life has changed so much.  

I love that I can adjust my hearing aids myself, to suit the environment, to suit me, I have complete control over what I hear and what I don't. For the first time in my life deafness and environment do not dictate what I can and cannot do, what sound I can or cannot access.  

The telephone is something I'd struggled with over the years.  Feedback made even trying to communicate on the phone a complete nightmare but I had made use of either text or FaceTime to connect with others, two useful forms of communication open to deaf people but not in a work environment.  

Those limitations are now gone thanks to Linx2 and not only can I use a telephone I have bluetooth connectivity which means I'm able to pair hearing aids with iPhone and (lots of other things too) I feel a phone call on my wrist thanks to taptics, press my Applewatch, to connect and I hear clear sound directly into my ears.  I can stream music directly into my ears, I can alter bass and treble, I can vary so many things on the ReSound app on  Applewatch and I am safe.

I have worried about my iPhone being taken snatched from my hand on a busy street full of people I cannot see, but not any more, my iPhone stays safely tucked away in my bag.

My confidence has grown and I'm able to venture to new places using this incredible technology.

Seeing danger is virtually impossible for me these days but now I can hear it, I know where sounds are coming from and as a result I feel safer which makes me feel so much more able 

ReSound:

You completed the picture for me, by allowing me to access the incredible Linx2 hearing aids.

I feel both grateful and very humbled that you have not only taken an interest in me but also such an interest in Usher Syndrome and the work I do raising awareness of the condition.

We are a group of people who often feel overlooked and misunderstood and yet with the right understanding, support and equipment we are very  capable, our biggest obstacle is often accessing the necessary equipment!

Since being fitted with my Linx2 hearing aids in May this year I have developed a fantastic relationship with the team in Bicester and was flabbergasted to be invited to be a part of their recent roadshow, it was an ideal platform for me to raise awareness of Usher Syndrome, of my charity The Molly Watt Trust and for me to demonstrate exactly how life changing their products are.

I am no longer isolated by my deafness. I am still deaf but the enhancement I experience every day with Linx2 has been truly overwhelming.

When, like me, you are down to only 5% of useful vision and no cure in sight (excuse the pun) the best available technology to enhance hearing should be a necessity for the deafblind.

So thank you ReSound, your technology is fantastic, I cannot imagine life without Linx2 now and I know things will only get better and better.  

Thank you for all you have done and continue to do to support me and my charity, I will be eternally grateful.

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