I recently received an applewatch from The Molly Watt Trust, via their GlobalGiving project.
I love gadgets. I have ushers syndrome type 3 which is gradually robbing me of both my hearing and my sight. My vision is now about 3 degrees and my hearing which is moderate to severe and will get worse.
There is nothing to aid my eyesight but thankfully I use NHS Phonak hearing aids to hear, in a small way they compensate a little for my blindness, life is very challenging. I also rely on Jason my guide dog.
As my condition deteriorated I was unable to continue with my career.
As a result I now keep myself busy travelling around carrying out charity work for various charities.
Travelling is very challenging, however, I am very determined.
I recently upgraded my phone to the iPhone 6s plus yes it's big but I can see it. The accessibility is fantastic and there are so many useful apps. I really don't know how I managed before.
I also have the latest Phonak hearing aids from the NHS and a Phonak ComPilot neck loop which works brilliantly with my iPhone and iPad so really important to me for simple things like taking calls while I work my guide dog with ease. I can listen to music or watch a video on my phone in a crowded place or on the train, the sound streaming directly to my hearing aids.
I had read so much about the applewatch and couldn't wait to set it up and synchronise everything.
I’ve become quite good at ‘pairing’ and ‘syncing’ and I could not work out why I could not answer a phone call on my applewatch, I fiddled around, I contacted both Connevans and Phonak, to find out what I was doing wrong to eventually be told by Phonak that their equipment is not compatible with applewatch I am absolutely gutted that I am not stream sound from the applewatch apps using speech, yes tactics are fantastic but being able to stream sound directly to my hearing aids would allow me full accessibility to many more apps.
I really struggle to hear a call on my applewatch also I don't really want everybody else to hear my conversations meaning I am missing out on accessibility that would make a difference to my daily life.
Thankfully the maps on the applewatch use taptics, something new to me and brilliant for the deafblind as it vibrates in sequences for turning left or right.
If I could get sound streamed direct to my hearing aids that would be perfect.
I am an independent guy and I like to plan as many routes as possible on my own, the last thing I want is to look vulnerable in a city with a guide dog.
My verdict so far, "applewatch is brilliant, it is making my life easier" but Phonak hearing aids and ComPilot are a let down.
It is so frustrating that I could have the very best connectivity and accessibility but sadly not with the hearing aids and equipment I have .
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.
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.
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 ..