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!
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.
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
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.
I have now realised after many years that always trying to fight Usher Syndrome certainly does not work.
I don't know if it's a pride thing or that I am just perhaps so damned stubborn that it gets in the way of actually letting me try to live a normal life.
I can always remember as a child being given a thick pair of NHS brown glasses I hated them with a passion and fought hard against wearing them!
Thank goodness lessons have been learnt since then and those hideous glasses are a thing of the past.
I also fought against hearing aids but now I know I am not alone.
I fought against the fact I had to give up driving.
I fought against using a cane then the realisation I needed a guide dog.
I thought I was the most stubborn person in the world until I realised I was only fighting with myself, with acceptance of Usher Syndrome, that both my hearing and sight were worsening, the very things that would help me cope I would not accept! I did not want to be “different!”.
I struggled with myself, my changing world, changing needs and I wasted years not accepting the inevitable.
I have Usher Syndrome type 3, the rarest of the Usher types, I am different but I am not alone.
I have searched my soul so long and hard and realised the guy in a wheelchair, woman with a birthmark, the boy with a prosthetic limb, old lady with a wig surely they must feel the same way as I do . So if you analyse these things who defines what perfection is in a human being? I'll tell you it's you and no one else .
So when you wake up to that fact as I did you won’t let Usher Syndrome tear you apart.
I had for years and years quite literally allowed it to rule my life in such a negative way but now I have my life back to a certain degree. You have to learn to live with Usher Syndrome then you are more in control.
I’m now glad to say I'm a lot happier and can for once share information openly the word BLIND no longer hurts I can take a joke about it and even make the jokes about it .
The most important thing is I adapted I now have more glasses than Specsavers to make sure I got what was right for me and I don't care as long as they work for me.
I have a huge array of multicoloured canes because that's what it took for me to come to terms with cane training.
I lost my driving licence so I bought a tandem.
I love my guide dog and can travel places I would never dream of going and have without a doubt met the most inspiring people in the world who actually turned their lives around and just get on with it and enjoy it.
My Bradley watch has even become something of a fashion iconic symbol.
I’ve learnt some Braille too.
I strive to keep busy I now love life so much more.
I’m excited by the latest technology that is out there.
I am on my third set of hearing aids and yes my ears are sadly like my eyes deteriorating but as anybody with Usher Syndrome, deafblindness knows good hearing aids are essential as the ability to use any visual clues diminishes.
I am grateful to the internet for finding more people with Usher Syndrome, it is rare but there are a fair few scattered all around and we are all looking for each other as sadly there is little specialist support for us so we all need each other.
This is how I came across Molly Watt, her supportive family and The Molly Watt Trust.
I was very fortunate to have a cracking weekend at The Molly Watt Trust Edinburgh Event and sat through a very informative presentation from a guy from ReSound a hearing aid manufacturer leading the way in hearing aid technology followed by a short presentation from Molly herself speaking of her work for MWT but also about how her life has been transformed by Linx2 ReSound hearing aids.
I am pretty switched on with my iPhone and after such a positive blog about Applewatch http://www.mollywatt.com/blog/entry/my-apple-watch-after-5-days I am looking to getting one as soon as possible as it will absolutely allow me access to new things including navigation and safety and now I also need access to these hearing aids, they will give me so m much more than the ones I have at present.
I've done research on these and they appear to be the best available hearing aids which we can now be in total control of in every situation . These aids can link via Bluetooth to a free app from ReSound so you can adjust your aids as appropriate be it where a busy, noisy pub or outside in the park . This is what we have been waiting for this is very high tech but very simple to use .
The amazing thing is they can even be paired to the Apple Watch via Bluetooth . So now my quest to make life better and enjoy it a little more also making me safer on my many travels I will try and try hard to get these at the top of my
Wish list .
Remember life is what we make it if we adapt it gets better we don't have to fight all the time .
Technology is definitely the way forward as I know it can and will make a huge difference to my life ..
The main aim of the Molly Watt Trust has always been to raise awareness of Usher Syndrome and we continue to do this in as many ways as we can.
Molly continues to raise awareness with her keynote presentations and motivational speaking as often as she is able and to as many people as she can reach, all different ages in all different walks of life.
Our guest bloggers also raise awareness by sharing their personal experiences which is a huge help.
The smallest bit of awareness can help somebody's daily challenges hugely.
Most of you will be aware of Molly's recent blog about her apple watch which was seen by over 200,000 people in a month, the awareness from this one blog created a very healthy interest in Usher Syndrome and it's many challenges, particularly from the world of technology which is very encouraging moving forward with accessibility.
The blog showed how all sorts of new technology can enhance the lives of people living with the condition.
A most generous offer from GN ReSound UK Ltd to allow her to try their new smart aids, compatible with Apple iPhone but even more exciting and exclusively, at this time, compatible with the new Apple Watch.
Of course experiencing this new technology has been fantastic for her but as important is her feedback and her thoughts relayed to both the company and to other hearing aid users and particularly those with Usher Syndrome.
The result of this is that Molly produced a further and much more detailed blog (My Eyes, my ears, my Apple Watch) which can be viewed at www.mollywatt.com which again pointed out the importance of up to date technology and how it has enhanced her life and continues to do so.
Whilst this is fantastic it also makes it crystal clear that people with Usher Syndrome and hearing aids could hugely benefit from the very best technology just like those who need and rightly get cochlear implants.
Research into new and useful technology is exciting so whilst we wait for science to catch up thankfully there are things that can make a difference to everyday life, the most frustrating part is funding it!
If you can help in any way please contact us.
In the meantime we will continue our work raising awareness and funds as best we can to purchase smaller pieces or equipment to enhance daily life.