At the end of my work and networking trip to the other side of the world, Mum and I decided on a a trip to the beautiful island of Bali to spend the last 10 days relaxing.
Arriving in Bali was surreal, it was dark outside, I hate arriving anywhere in the dark as I see so little.
We were very tired and our body clocks were already extremely confused! We were met with intense humidity whilst looking for our taxi service.
At Denpesar Airport we were met by a sweet Balinese gentlemen dressed in traditional Bali attire.
I felt quite important when Mum pointed out this man who was stood waiting for us holding a banner with our names on it. This lovely man spoke perfect English and without much of an accent so I was able to understand him quite easily, accents can be a problem for the deaf, thankfully for me, not this time.
The hour drive to Ubud for me was exhausting, it was really dark so I could not appreciate Bali's ornate beauty. What I could see was darkness amongst blurred street lights the lights hurt my eyes. It was incredibly disorientated amd quick sick so I put on my dark glasses turning my focus to communicating with the gent and his colleague the driver taking us to our destination, thankfully with no communication barrier it was pleasant interacting and finding out more about Balinese culture.
On arriving another surreal experience, I was guided by my Mum up some large steps, the lighting was low and I could hear water fountains, both left and right of the rugged steps but I couldn't see them in the dim light. I stopped on the steps holding onto my Mum’s arm, I had not experienced the still yet peaceful sound of water flowing before - I have to admit I felt quite emotional and incredibly lucky to have hearing aids to provide me with such beauty I couldn't see, but my imagination filled in the gaps.
As we carried on up the steps I sensed we were “inside”.
However Mum informed me whilst we were at reception we were still actually outside. Mum gave me a quick audio description which helped me form a picture of serene beauty and tranquility in the middle of a jungle.
There was water all around us in the lobby/reception. I felt frustrated I couldn't see it all, but so grateful to hear the flowing water, to smell the natural smells, flowers, damp trees, the smell of the Balinese countryside and to hear new sounds, I’ll come back to those sounds, the real feeling of peacefulness.
At the reception we were once again greeted by more incredibly sweet welcoming Balinese staff.
After check in and a complimentary sweet fizzy drink (was not totally sure if it was alcoholic or not!) all my senses were truly tested!
Mum soon grabbed me and guided me back down the steps and to what I was told was a golf cart already loaded with our luggage. We were then escorted to our chalet, what service I thought!
On opening the wooden gate into our private chalet I could see a little light coming from within, I couldn't wait to get inside, get some better lighting and really see where I was.
WOW, I was not disappointed, we were shown around our chalet like VIPs, I felt incredibly humbled. The bed was draped in what looked like sheer sheets hanging from the ceiling, the floor was made of large man made concrete slabs, small tables were decorated beautifully with Balinese flowers. The whole decor was ornate and stunning. The bathtub was almost the size of my double bed at home, and then a door opened to what was our outdoor shower! Again everything beautifully decorated with flowers, plants and everything ornate. I was quite overwhelmed and still I could hear noises, noises I hadn't heard before!
I was really tired that night but I couldn't sleep, I never sleep with my hearing aids in but on this particular night I didn't want to take them out. I was enjoying hearing the sounds of the jungle, I knew I could hear birds outside and some running water but really couldn't decipher the other noises, I was fascinated by the sounds, it still amazes me that I can hear outside with my Linx2 smart aids, something I could never have done previously. I went 20 years thinking you only hear sounds in the same room as you!
I fell asleep for the first time ever wearing my hearing aids!
The following morning was an out of body experience! I woke to morning sunlight shining through the sheer drapes from the ceiling around the bed, fortunately the drapes stopped the bright glare of the sun so I wasn't blinded by the brightness.
I hadn't noticed how many large windows with blooming large leaves growing in and out of the chalet met with the primitively made roof in our ornate and beautiful chalet. It all felt incredibly natural, the outdoors reminded me we were in a jungle in Bali.
On opening the patio door, WOW, I couldn't quite get a grip!
Scanning around I noticed a pool, being overlooked by a Hindu God statue fountain, ahhhhh, that was one of the sounds I’d fallen asleep to. The statue was also decorated in beautiful natural Balinese flowers, two sun beds on a small decking adjacent to the pool, and then a straw roofed hut with two massage beds also decorated with flowers. On the patio was a huge chaise lounge, a sink a table with a large bowl of tropical fruit on top and four chairs what more could we need?
A trip to the spa I thought, that really would be paradise, so we booked for that evening.
I was desperate to see what I had missed the night before so Mum and I tested out the outdoor shower, quite an experience and again I was taken aback by the smells of the hand made shower gel, soaps and shampoo it really was something I'll always remember.
Dressed and ready we left our part of paradise and ventured up to the hotel reception area where the restaurant was to be found.
My Mum was chatting to me on the short walk but I wasn't listening, I was still fascinated by the sounds coming from all around me, I could definitely hear birds and definitely more than one kind, I could hear running water. I was trying to concentrate really hard on what I could hear. The sounds were all quite relaxing, I'd never experienced these particular sounds before.
Mum guided me to reception and this time I could see the ponds of water either side of the walkway and I could see huge fish and again fountains shaped like Hindu gods and decorated in tropical flowers. There were also burners that smelt tropical, it really was a feast of the senses.
The receptionist greeted us and offered us a local hot drink whilst we decided on treatments for later that day, finally I felt able to relax after a very long and busy couple of months.
We had a breakfast of fresh fruits and local produce then headed back to our private paradise to enjoy the sunshine and warmth of Ubud.
I was able to lay in the sunshine and unwind listening to the unique sounds of the jungle. My headache lifted and I felt good.
After a day of sheer relaxation and room service I was looking forward to some pampering.
On arriving at the spa we were offered drinks, haven't a clue what they were but they smelt of ginger but tasted of something else!
Two ladies showed us into the private room overlooking the jungle. Inside where two massage beds, the view was stunning.
It was amazing, the whole room overlooked the jungle, ornate frog statues were everywhere, beautiful flowers, I couldn't believe the colours, the smells and the sounds, sheer peace and tranquility.
Having been massaged with magic fingers and hands from head to toe, we were then covered in a seaweed wrap and then before long we were told to shower and then soak in the jumbo sized free standing bubble bathtub which was full of floating flowers with an aroma I'll never forget surrounded by candles it was truly heavenly.
After the masseuse's left mum and I looked at each other and smiled, a long time since we shared a bath! Fair to say we laughed.
'Where should I put my hearing aids Mum?'
I couldn't see anywhere safe to put them without losing them in the jungle or the water!
Mum took them and put them on a shelf near the towels.
After our glorious soak in the huge bath overlooking Bali's outstanding nature, I remember feeling happy that it was still light outside so I could appreciate my surroundings even though it was in silence, it was absolutely stunning.
Getting out of the bath we felt completely fresh and relaxed.
The warmth on our skin dried us in no time, though being wrapped in a towel was somewhat refreshing.
We sat quietly in rocking chairs looking out watching the sunset and darkness descend upon us before getting dressed.
‘I need my hearing aids mum’ Mum's glowing face frowned, she couldn't see them, I was of no help in fading light so sat still and safe whilst Mum searched and then the horror, surely they have not fallen into the giant bath of scented flowers and bubbles!
Mum put her hands in the deep water and horrified she fished out one hearing aid, followed by a second we were both speechless
My mind was racing, 9 days without hearing, 9 days to not appreciate the beauty my hearing aids provide me, the unique and new sounds of this beautiful place and the everyday things like conversation, chatting with my Mum, conversing with the locals, communicating, there'd be none of that accept on those rare occasions when my sight is at it’s best and I can lipread. My mind was racing. I felt physically sick the thought of being blind and not being able to hear filled me with horror, how would I cope.
Mum was speechless, in shock, she knew 9 days without me being able to hear would be tough on us both and would definitely have spoilt our holiday.
Mum insisted I take the batteries out and throw them away. We got dressed in record time.
Mum wrapped my hearing aids tightly in a tissue and put them in her purse.
The walk back to our chalet was in silence. I hung on tightly to Mum’s arm, I felt very disorientated in silence and darkness and felt very vulnerable.
As soon as we got into the chalet Mum unraveled the now drier hearing aids and placed them in a cup while Mum found the hairdryer going on to use it aiming its heat into the cup for 15/20 minutes, it felt like a lifetime after which she asked me for new hearing aid batteries, neither of us felt very positive but it was the only hope we had.
I took the first hearing aid, fitted it in my ear and switched on and there it was the short signal sounds to say it was on and it worked, I was beyond happy, I felt elated. One working will be better than none I thought as I reached for the second hearing aid, put the battery in and again those switch on sounds and hearing aid two on and working WOW, I was so overwhelmed I was tearful - these tiny hearing aids are a huge part of what makes me tick.
I didn't want to switch my hearing aids off again that night, not only was I afraid they may not come back on but I wanted to continue to enjoy the sounds of paradise.
Thankfully my hearing aids did not let me down and continue to work and I appreciate them more than ever.
The following day we talked a lot about the sounds of Bali and that one sound I kept hearing but couldn't identify.
sat at the bar after a tropical shower I asked Mum and the barman what the strange, louder than normal noise was ‘ah’ said the barman, ‘that is the noise of the frogs, they are always noisy at night and even noisier when it rains!’
I was wide eyed, anybody who knows me knows I have a bit of a thing for frogs and yet I had never heard a frog before!
How I love the sound of frogs.
That hour or so of shock was a reminder to me just how important hearing is to me and why others like myself should have the opportunity to use such impressive technology, it really is life changing.
There is no doubt in my mind, if my hearing aids had not worked after the accident at the spa without a doubt I would have struggled, my holiday would have been ruined and my confidence destroyed.
Hearing is my access to people and without people and sight I fall into isolation how obvious that became that day in paradise.
I have written and spoken extensively about my GN Resound Linx2 smart hearing these aids over the last 20 months and what they have given me but that day in Bali, the fear I felt at not benefitting from hearing made me very aware that praise I have given them is little compared to what they give me every single time I switch them on.
NB I would not recommend having your hearing aids anywhere near water or where they could be damaged but am thankful my pair stood that terrifying ordeal.
Usher Syndrome for me means my whole world is accessed via accessible assistive technology.
A year ago to the day I was fitted with Resound Linx2 hearing aids. It has been quite a year, a year that I have experienced some amazing things.
I was born deaf so very used to wearing hearing aids and I coped pretty well. Great support as a child, I could speak well and on the whole was doing pretty well at school, I accepted deafness, I knew no different. However things changed upon my usher diagnosis.
As my sight went I felt as though my hearing had deteriorated too, thankfully this was not the case but in actual fact I had lost my ability to hear with my eyes. I couldn't lipread, i couldn't see body language or gesture properly. I visited audiology to be told my hearing was stable so I continued to use the same hearing aids, I then realised how much I had relied upon my vision to help me hear. I could no longer see much and I was really struggling to hear and there I was expected to just get on with it.
To say it was difficult is an understatement so I isolated myself, the world was a frightening place when you cannot see or hear.
I look back now and it makes me angry to think this is so unnecessary knowing so much more about the available enabling technology.
Had I been fitted with Linx2 when I was diagnosed with Usher Syndrome my blindness would not have impacted so heavily upon me. The clarity of these hearing aids, their ability to enable spatial awareness, to have several settings changeable depending on environment instead of feeling more deaf and more isolated than I had ever felt as a deaf person I would have felt more confident in my ability to hear and to trust my hearing.
Linx2 bluetooth connectivity has enabled me to use a telephone for the first time in my life and to hear clearly, I was 20 years old before I could make a phone call with confidence and to hear the voices of my family properly, things most people take for granted.
I can now localise, I know where sounds come from. Before I was blind I would hear sound and often need to look all around to find the source, looking all around is no longer an option with only 5 degrees of sight left so this feature is priceless. I can be out and about with guide dog Unis and hear the sounds of danger, I can also hear the sounds I've missed over the years, I can hear birds sing and dogs bark, I can hear aeroplanes and the more important things I can hear voices, the voices of my family so clearly. I can hear new tones, I hear music, I can hear mood and picture atmospheres and so much more.
Blind people rely on their hearing and deaf people on their sight and yet deafblind people like myself are expected to "make do" to get by. As if life isn't tough enough with dual sensory impairment, surely we should be entitled to technology that will enhance our lives, to enable us to get on as best we can.
Linx2 enable me to access so much more. With full connectivity to my iPhone and applewatch I can now access lots of useful apps developed to assist the blind, something I could not do with my old hearing aids.
For me blindness is the most challenging part of my condition, there is no cure for it, it affects how I personally access information and also my mobility.
There is no cure for my deafness either but the hearing aid technology I use has been life changing so not the issue it was for me.
My interest in assistive technology and accessibility heightened on my Usher Syndrome diagnosis. Being only 12 on diagnosis and then registered blind at 14 I had already begun strategising and experimenting with assistive technology as it enabled me to "fit in" as best I could.
I see myself as fortunate to be born at a time when technology was good and am thankful it continues to get better and better, sadly for many accessing the best enabling technology is all too often out of reach financially which is very sad.
In my mind best technology is the only way forward and long term would work out so much more beneficial to all.
More people with Usher Syndrome would have the ability to be active members of society. Able to get out and about with confidence, work in different environments, use a telephone, communicate confidently rather than be home, unemployed often feeling isolated and depressed.
Technology should not be "frightening" to anybody it should be embraced by all it is not just fancy gadgets for people like myself, with other disabilities and for the elderly it is enabling.
I am deafblind, I am 21 years old and technology has given me my life back.
I am hearing with the most amazing technology, technology I'd dearly like for others who would benefit from them. I am able to access lots of information via my iPhone and Applewatch, I am even seeing things with my 5 degrees of vision, things I haven't seen in years via the Ricoh Theta s 360 degree camera. This little camera enables me to take a 360 degree picture which appears on my iPhone screen, I can move the picture around with my finger to see a whole screen of information. A strange experience for me the first time I used it but an amazing experience I can only describe as seeing an atmosphere, zooming in on every area of my screen. It gives me a memory of peripheral vision, something I lost almost 8 years ago, absolutely amazing.
I cannot imagine my life without my trusty MacBook or my iOS products they enabled me to access my education, to reach out to others and to maximise my abilities as a deafblind person and more excitingly these technologies keep improving
I love teaching others how to use the technology I am lucky enough to enjoy, I want others to understand what technology offers and I want those in technology to understand the often unique needs of people with sensory impairment, particularly Usher Syndrome and deafblindness.
Whilst accessible technology is available and amazing it remains that far too many websites are not accessible, even with fantastic technology. This is an area that needs to improve and an area that interests me.
There is no reason why it remains that many educational intranets and government websites are inaccessible. Still many of the most important Social Media platforms are not fully accessible and this needs to change.
I myself was denied my University education and in this day and age this is absolutely not necessary.
It is refreshing to know there is now a Global Accessibility Awareness Day as it must means Accessibility is firmly in the minds of many going forward and this is absolutely good news.
A really is for Accessibility...
I recently read a piece virtually comparing hearing aids with earBuds / EarPods and hearing aids with glasses!
I read the piece several times and still thought it strange. I'm 21 years old and have worn hearing aids since 18 months old. Even in my time hearing aids have come a long way, in fact with this comparison to earbuds / EarPods the look appears to have come full circle however the technical ability has improved tenfold.
I can remember being shown a picture of a friend wearing hearing aids probably 30 years ago. A big bulky box worn on the chest with wires to the ears, I felt so lucky to not have those but the hearing aids that sit on my ears and attached to ear moulds.
My issue from about 3 or 4 was that I wanted coloured hearing aids not the skin coloured ones that old people wore in fact up until I was about 10 or 11 I insisted that both hearing aids and ear moulds were pimped up in bright colours, being young and female I wanted to make my hearing aids look cool, trendy and fashionable, something to be proud of, just like being deaf.
Back then it was all about the look rather than what the hearing aid was actually doing for me.
So I disagree that hearing aids couldn't be made to look fashionable, even then, yes more limitations than glasses but they could be made to look how I wanted them to.
For me the only difference was that wearing hearing aids was more rare at school than wearing glasses.
In the early days I wore a radio aid in as trendy a bumbag as possible, I had just about every colour, shape and size you could think of thinking back my friends thought it quite cool, the wires I hated that attached to my hearing aid via a special connector (a shoe) made it look as if I had and was listening to what was then called an MP3 player, back then they too had wires.
I hated the wired connection but my friends thought it quite cool! Thankfully as time went on I was delighted those horrible wires disappeared and wireless radio aids became available.
The fact hearing aids have gotten smaller and more discreet is a bonus and I no longer wear brightly coloured ones the most important thing is that my hearing aids now allow me to hear as best I can based on my level of hearing loss and in as many situations as possible and it is this assistive technology that costs.
The hearing aids I wear today, Linx2 are tiny and along with the amazing access to sound and connectivity they give me they do allow me to stream music direct, however thankfully that is just a tiny part of their capabilities as being deafblind my need is far greater.
I read "Today's hearing aids are overpriced and unimpressive".
I totally disagree I was born deaf and registered deafblind with Usher Syndrome at 14 years old and I've never been so impressed in my life, the bigger issue is making this amazing and enabling assistive technology available to more.
The best technology will always come at a price and for people like myself be a necessity in allowing accessibility to the world that most take for granted.
My Linx2 hearing aids pair perfectly with my apple products and allow bluetooth connectivity to all sorts of things, they enable me to do so much more than listen to music, they are as I've said before "Life Changers"
Small and wireless is fantastic but earbuds / EarPods my Linx2 are definitely not!
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.
Best Western Kings Manor Hotel, Edinburgh Saturday 3 October 2015 was a great success.
It was brilliant to see old and new faces and a time to share some news and information of our work throughout the year.
We were delighted to have a very detailed and useful presentation from Graham Roberts of GN Resound about the amazing Linx2 smart aids and I think it is very clear that these hearing aids would make a huge difference to everyday life for the many who rely on hearing aids, particularly as blindness sets in.
Molly’s presentation about her work raising awareness and of course a detailed talk about accessibility and the Apple Watch which fitted in around the compatibility of the Linx2 hearing aids.
Finally technology addressing both deafness and blindness and to fit well with Usher Syndrome - the remaining issue how to enable access to it!
We were able to share with our guests the news that not only has The Molly Watt Trust been accepted onto Globalgiving scheme but also that our first project has been submitted and accepted.
This particular project was set up as direct result of Molly’s accessibility review of the Apple Watch and it’s capability to enhance the lives of people with Usher Syndrome.
The huge interest/feedback we received as a result of Molly’s Apple Watch blog and the many who have themselves purchased the watch as a result and are now benefitting from what it has to offer.
The ability for the Apple Watch to enable safe navigation via taptics is a fabulous feature and enables those often isolated by the restrictions to mobility that Usher Syndrome poses and is making a very real difference and just one of the many amazing positives.
The freedom for those with Usher Syndrome to get out and about independently really is priceless.
We at MWT are looking to fund Apple Watch and to enhance the lives of people with Usher Syndrome.
Molly and the Trustees are working very hard fundraising and invite people to consider supporting our work.
We have been very fortunate to have schools fundraising for our cause and to have had two sponsored events this past year but we need more people actively involved.
Project two is in the planning stages, more details to follow.
We would like to thank everybody who took the time to join us and I’m sure you’ll agree after the presentations the social event was fun and useful to all.
Thank you for all who supported the raffle and purchased MWT Christmas cards, it was not a fundraising event but your generosity meant an additional £313.
Congratulations to the raffle prize winners.
Finally thank you to James Brown and all staff at Kings Manor Hotel for their wonderful hospitality for the second year running, we’d like to come back next year, please.
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 ..
I was recently talking about cochlear implant and was told the reason those of ANY age with Usher Syndrome (deafblind) that are profoundly deaf and wanting cochlear implant and who pass the NHS assessment will qualify for bilateral implants, however for those just deaf only children are considered for bilateral implants, adults would only get funding for one.
The deafblind are always considered for bilateral implants for the following reasons:
Better/improved speech perception
This clearly and correctly indicates differing need.
However I am horrified that the same need is not identified for hearing aid users.
The effect of blindness on somebody with any level of deafness is profound and yet to date nothing different is considered as extra assistance particularly as the ability to see danger diminishes.
As a hearing aid user who went from perfect vision to registered blind within two years I coped with my NHS hearing aids, however, I was almost run over twice, had it not been for my guide dog I would not be here today as it was she who alerted me to a lorry reversing from my left side on one occasion and secondly to a car that was so quiet I couldn't see or hear it as it appeared out of nowhere.
to say my confidence was shattered was an understatement and I could not leave the house independently for several months.
I am lucky to have a guide dog, there are so many like me who do not and who are very vulnerable because not only can they not see danger but they cannot hear it either.
Of course if there was nothing else we would have to cope with everything including the danger, however there are far better hearing aids available and I want to know why the powers that be do not consider that hearing aid users also need:
Improved speech perception
No different to those with Usher Syndrome opting for Cochlear Implants.
I used NHS funded hearing aids since 18 months old, starting with analogue and moving onto digital as they became available and have had lots of different models and they were fine until my sight went.
Being unable to use visual clues made me very vulnerable and more deaf and listening became all the more exhausting, however I am now benefitting from the latest in hearing aid technology.
Around 4 months ago I was fitted with ReSound LiNX² hearing aids which have not only transformed my hearing but have given me “Improved speech perception, I can localise (know where sound is coming from) and I have spatial awareness along with lots of other amazing features which do in a small way compensate for my blindness.
To date I believe these hearing aids are not available on the NHS which means sadly out of reach for lots who really need them.
What is even more sad and totally unfair is that these hearing aids which can not only enhance the life of somebody with Usher Syndrome or save life are a fraction of the cost of bilateral cochlear implants.
If bilateral implants are best for somebody with Usher Syndrome they should have them just like a hearing aid user should have access to the hearing aids that will give them the most.
Sadly for those of us living with Usher Syndrome there are few who specialise in the condition and we find ourselves almost an after thought, isolated by either lack of awareness or ignorance.
We have great audiologists and great ophthalmologists but few who truly understand our challenges or our journey with “make do” care and equipment.
We are a unique group with the ability to get on but we need not just technology but the BEST technology and appropriate support.
I recently read about somebody I know who has Usher Syndrome and had got into a very scary situation.
Having Usher Syndrome this sort of thing is very easily done.
An accident as simple as getting on the wrong bus in the dark, being put off the bus with directions to safety but you didn't understand the directions and finding yourself all alone in the dark bearing in mind you are completely blind in the dark, terrifying.
Being deafblind is often very disorientating at the best of times and lots of us experience dizzy spells or vertigo, often seems part and parcel of the condition and being lost or feeling lost adds to the anxiety lots of us can feel when out and about particularly in unfamiliar areas.
Similar happened to me before I had guide dog Unis and I was petrified, fortunately for me I had my cane, must have looked lost and was helped to a bus stop and onto the correct bus home. To say it knocked my confidence was an understatement, I didn't attempt to go out alone for several months, isolating myself rather than face the possibility of getting lost again.
The day that happened to me I did not have a smartphone or the technology I am lucky enough to enjoy today I just did my best with what I had.
I am pretty confident today and I know that confidence and independence come from incredible technology and of course Guide dog Unis who has saved my life on more than one occasion as back then I struggled to see or hear traffic even with my old hearing aids.
I have blogged about my new hearing aids Linx2 but after four months of this incredible technology along with iPhone and Applewatch I can say my safety and feelings of vulnerability have improved substantially.
Now when I am out and about with Unis I have the ability to change my hearing aid settings to block out certain sounds so that I can not only hear traffic but I can identify the direction of the sound, something I have never ever been able to do so now I see so little I can have trust in my hearing even though I'm deaf and I hear nothing much without hearing aids - get this, "My deaf ears compensate for my dodgy eyes!"
I am now 21 years old and in four months I've learnt so much more about sound than I ever knew.
I hear sounds I've never heard, I've corrected my own speech, things I've said wrongly for years simply because I couldn't hear the sounds properly, I've "overheard" conversations, a really new concept for me, I can speak and hear well in small groups, I hear so much more its hard for me to explain its just quite an "Eyeopener and I'm blind!"
My confidence in my own hearing has improved my vocabulary, yes, even at 21 I'm learning new vocabulary, I'm not mishearing which was often my biggest frustration.
This last week I did something I never thought I'd be capable of doing without help - I took my first ever conference call yes, not Skype, not FaceTime I totally relied on technology to hear and this is how:
The ReSound Linx2 connect to both my iPhone and my apple watch via bluetooth. When the call comes in I can answer via my watch, clear speech goes directly into my ears, no background noise or interference.
I cannot describe my elation at being able to access a three way conversation, to hear clearly two unfamiliar voices and to make plans for an upcoming event.
I'm sure lots of people are thinking it's no big deal but it really is because using a telephone is something most take for granted and yet people with with Usher Syndrome who use hearing aids often cannot and as a result struggle, particularly in the workplace and yet it's possible if only this up to date technology was available to them.
To have these "Smart Aids" (the first to be fully compatible with the applewatch) the watch and an iPhone work out to be very expensive, however when considering what this kit enables a person to do it makes complete sense in my opinion.
I feel very humbled to have access to this technology, it absolutely makes me me.
I am not a tech expert, an expert of Usher Syndrome or anything else for that matter but knowing that this sort of technology exists and what it can do to enhance the lives of those with such challenges it has to be viable.
Speaking about Siri I have noticed it is by far better on my Applewatch than on my iPhone, I'm curious to know if it will improve on iPhone with the new operating system, either way I will continue to use Siri on my watch so I have the security of leaving my phone out of view and safe while I am out and about with Unis.
I'm still a huge fan of taptics but am now finding Siri so useful, when Siri talks to me the sound goes straight into my ears so I hear clearly thanks to these amazing Linx2 hearing aids and if Siri cannot help then there's almost certainly an app that will do so.
It's great to have so much independence via technology that I can access so easily.
I was asked if Siri understands "deaf voices" well, it understands mine is all I can say.
I'm also looking forward to understanding what "native apps" work on the new operating system for Apple watch and just out of curiosity to see if there is any safety element there.
Along with the excitement of so much new assistive technology available comes the frustration of knowing so many people who would benefit won't because they cannot afford it.
There is so much advancement in technology surely funding the right equipment as opposed to the cheapest equipment makes absolute sense.
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.