I was chosen as part of a project run by Molly Watt Trust with the support and collaboration of GN Hearing and Sarah Vokes of Correct hearing in Nottingham.
In February 2020 I was assessed and fitted with Resound Linx Quattro smart hearing aids, the gift of sound.
I’ve now been wearing these amazing devices for a year and in a word ‘Amazed’ at what they have given me. To start with I had a lot of learning to do hearing so many new sounds and frequencies my brain took a while to process everything and for the first 6 months or so I was like a baby learning how the world sounded again and constantly asking those around me what certain sounds were! I’ve also never had surround sound like this before its fascinating to me to be able hear something and pin point it exactly, for someone with tunnel vision this helps more than you’d realise and I feel so much safer for it too. Knowing what’s going on around me when I'm out and about keeping me aware and secure in my surroundings.
I can mention the little things like I never knew my washing machine and tumble dryer beeped when they are done, its a high tone I could never hear before, although it took me a while to figure out that’s what it was as I was still learning what things sounded like, I can hear a tap dripping and a clock ticking, so much so I had to buy a new lounge clock as the ticking became quite troublesome so now I have a silent clock although the previous one I’d had for years without issue so shows how little I really heard!
Also much to my daughters annoyance I can hear her upstairs I can hear her singing and dancing away in her room totally oblivious to me downstairs but I love it as she won’t sing in front of me so we will keep that one quiet! When I'm out in the streets or busy town centres I can hear traffic and people all around me I can hear the beep at the road crossings I can even hear someone far away calling my name to get my attention if they’ve spotted me as I’d miss them usually.
When I went back to see Sarah at Correct Hearing for a 6 month check and a few tweaks as I’d adapted more to the new sounds she ran a hearing test, I’d actually improved by a small but significant amount in my hearing for the first time ever in my life! Sarah explained this is due to my brain hearing so many new sounds it simply never had access to before so my range had improved and my brain had learned and helped my natural hearing, something I really did not expect and was quiet emotional at the fact so was my father who attended with me as we both knew my hearing was never going to improve or get better but it just showed that the right technology can in fact help in the right circumstances.
With the pandemic hitting its meant my life has changed as for us all. Our ways of working have changed so much, for me it meant I had to rely on my phone and laptop a lot more so the bluetooth feature built into the Linx Quattro hearing aids has become an invaluable tool. I can hold phone calls without issue and also listen to webinars or videos directly as well as hold video meetings with not only work but friends and family meaning I was able to be fully inclusive throughout. Another perk is listening to podcasts something I never did as it was so inaccessible to me but now I listen daily without issue as I can just press play and it streams straight into my ears, the same for music but my daughter isn’t such a fan when I start singing out loud!
A year with these amazing gifts have been life changing, they have changed the way I work and live daily from not having to worry about my batteries dying to being able to answer a call and hear crisp clear sounds something I never had before and now I'm sure I take for granted but gladly so as someone born deaf with limited vision due to Usher Syndrome its meant I'm almost on a level playing field in the world now rather than always being left behind or missing out because its too much trouble to others to adapt to make others included, I can now take control of that and ensure I'm involved and included thanks to these hearing aids. That is something when growing up with analogue hearing aids I never thought I would have or even be proud of being deaf or wearing hearing aids, this technology has given me pride and confidence in my hearing loss and I'm certainly proud these days to show off these amazing hearing aids.
Once again huge thanks again to GN Hearing, Correct Hearing Sarah Vokes and of course The Molly Watt Trust.
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.
When I first got my Resound LiNX Quattro Hearing Aids, I had the privilege of getting a Multi Mic too which I’m so happy and excited about because it really has made my hearing experience at school so much better!
I’m in year 11 now so it’s my final year where I have got lots of exams coming up so I really need to hear everything the teachers and students are saying at all times.
I’ve now been using this mic for a few months and all I can say is WOW!! It has really changed my life at school! I can hear the teachers so much more and better than I could before using my old hearing aids and a Roger pen and the sound is just unreal.
One of the things I really love about the Multi Mic is how I can turn up and down the sound, which is especially good because all teachers voices are different so I can turn the mic up if I can’t hear them or down because I find their voices are loud. What is also amazing about the mic is that I can turn the surrounding noises up or down on it to!
In different classes the general atmosphere is louder or quieter and previously I would just have to listen to all that and the teacher which I struggled to hear, whereas now I can turn the teachers voice up or the atmospheres voices down which has helped me so much because now I can hear everything I want to. Another thing I find amazing about the Multi Mic is when I’m doing group or partner work at school, and I can place the mic on the table and listen to all of the people around me when I talk, which is really amazing because then I can hear and concentrate on what they’re saying while others are talking around me! This has really helped me because it’s made me feel a real part of group work now. I don’t have to keep asking them to repeat what they’re saying anymore because I can hear them talking straight away.
I feel I've grown in confidence a lot more to talk to other people and actually hear them better during group work or partnership work. So thanks to my Multi Mic has made me come out of my shell a lot more and helped me communicate with a lot more students at school. So thank you to The Molly Watt Trust, GN Hearing and Sarah at Correct Hearing for showing me how it works it really is helping me progress at school.
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.
On February 3rd 2020 at the age of 31 I finally entered into the hearing world properly for the first time. I’ve had years of NHS hearing aids and the best they could offer still wasn’t enough as my eyes deteriorated I needed to tweak my hearing aids constantly in an attempt to hear as well as others, but issues with feedback, echoing and blurring of words still persisted no matter what I did. So the best in the NHS for someone with DeafBlindness still didn’t suffice as I strived for independence with my guide dog.
So on this morning I felt nerves and skepticism as to what these Resound LiNX Quattro 9s from the renowned GN Hearing could really offer me. My daughter Lily (9) was excited for me to have them she was looking forward so seeing what technology they had In store. Jane & Molly Watt arrived at my home to take me to Correct Hearing in Carlton Nottingham to see audiologist Sarah Vokes.
On arrival I entered into the audiologist Sarah’s room and we began by getting to know each other, finding out what I could get from these hearing aids in my day to day life asking my hobbies and commitments so that later on Sarah could adjust the LiNX Quattro’s specifically to suit me. I needed a more up to date audiology test which I had there and then, this again was used to tailer the hearing aids to my ‘prescription’ to ensure I got the most out of them as they would adapt to my hearing loss.
Then Sarah showed me the new hearing aids, my mind was blown! They were the tiniest ones I’d ever had and the tube that went into my ear wasn’t a tube but a thin wire with a processor at the tip where the dome went round and fitted snug in the ear canal close to the ear drum! I’d never had this and didn’t even realise that technology was possible, this was amazing to me. Then Sarah talked me through the settings as she synced the aids with my audiogram and tailored the settings to my lifestyle.
Then came time to pop them in and switch them on! Immediately I heard conversations behind me and surround sound and I could accurately pinpoint where sounds where coming from, something invaluable to someone with tunnel vision. I felt like a baby hearing familiar sounds but in a totally new way, we went outside and tested traffic, I could hear cars approaching from a distance accurately, again something invaluable for me with my guide dog to keep us safe when walking the streets.
It was overwhelming, speech so clear I could hear my own voice and mis pronunciations even hear my own chewing for the first time, trust me that was a weird sensation for me as I’d never heard my own jaw before! These hearing aids were enabling me to hear for the first time IN my ear canal the natural cone shape of the ears were for the first time useful as I’d only ever had microphones behind my ear, these had a microphone IN my ear so yes at 31 years of age I was hearing like a normal person would for the first time!
After some fine tuning with Sarah ensuring I wasn’t too overwhelmed initially, she connected my Apple Phone and AppleWatch up to the Resound 3D app so I could change ‘channels’ and turn up or down the volume etc once I knew everything that was needed for now, we left with an appointment for a months time to check everything is going well.
When we left me Molly, Jane and our Guide Dogs Minnie & Bella went for a bite to eat to put my hearing aids to the test, I switched to ‘Restaurant’ mode and wow, yes I could hear the surrounding chatter but I could also tune in directly to Molly & Jane's voices, clearly, their speech sounded familiar but so different as I’d never heard such clarity in voices before. I could hear things were far away and what was close to me, for the first time since my sight declined I had depth perception thanks to these Line Quattro smart hearing aids. I was so happy!
Over the last few weeks since my switch on, I’ve had my follow up appointment which has turned me up to 100% of my hearing prescription, we did this in stages to allow my brain to adjust to the new sounds. The past few weeks have been interesting, I’ve been playing with the app, so I’ve set the GPS for when I take my daughter to school my hearing aids automatically switch to outdoor mode with speech clarity and noise reduction on low so this enables me to hear all around me knowing if children in the playground are close or far away and most importantly I can pinpoint my own daughters voice amongst the playground chaos.
I've done similar for when I attend tennis lessons or go on dog walks, the connectivity of these hearing aids is something I’ve never had but now I do I’m finding it so useful in daily life. Im not constantly walking around adjusting the volume like I used to, I’m now just turning speech clarity on or the treble up or just using a preset setting like ‘Outdoors’ or ‘Restaurant’.
Since becoming adjusted to the Linx Quattro’s I’ve heard bird song, drones, the Clock Ticking even my own dog makes noise when she yawns, I’ve never heard them before. I’ve had to remove the clock from my wall as I’d never realised how loud the ticking is! I've heard the low sounds of London Tubes under my feet while at an appointment at Moorfields eye hospital, I knew they were there before but I’d never actually heard them before.
Hearing bird song, struck something emotional in me, my mother passed away 2 years ago, she used to love hearing, watching and feeding the garden birds something I struggled to indulge with but my daughter did wholeheartedly and it became a real grandmother & granddaughter connection for them both. So for me to now hear them sing as spring approaches is amazing, and it doesn’t have to be quiet for me to hear them either, I can hear them when the trees are rustling and children and playing near by, these hearing aids pick up that higher tone of bird song I couldn’t hear before. A precious gift to me.
I could go on, for example the way I hear music now is totally different. But for now I’ll leave it on that note until my next blog. In the mean time I’d just like to say a personal emotional heartfelt thank you to the Molly Watt Trust and GN Resound for enabling me to be Case Study 2 along with Sarah at Correct Hearing, you really have no idea what you have given me, words cannot describe the difference this has made to my life. What you have given me and my family is truly priceless, Thank you!