When I peer into the mirror I see my right hazel/green eye. Traveling downwards and towards the left I can see my nose then my mouth. Following the nose upwards and then to the left I can then see my left eye. Welcome to tunnel vision.
I am a daughter, sister, niece, friend, student, wife and mother. I also have Usher Syndrome type 2.
My new 42mm Apple iWatch series 1 kindly donated by the Molly Watt Trust, arrived on the day of my Grandfathers funeral, a bittersweet moment.
I have been using Apple products for as long as I can remember so syncing the iWatch with my iPhone 5se was easily done.
At first I was slightly daunted by the small screen and equally small symbols to tap to activate each app and I did wonder if I would ever get used to it. The large watch face and its many options to choose from are easy to read and engage with. The main one I use is the first option where the activity levels take up most of the screen and the time can clearly be seen in the top right hand corner.
The activity circlet is quite addictive and causes my competitive side to try and complete each of the 3 sections on a daily basis. There is a pang of disappointment if I don’t achieve this!
The iWatch is also incredibly bossy!
It likes to remind me to stand up if I have been sitting down for too long, every hour! Having a 7yr old and 17month old means the the chance to sit can be a miraculous achievement. I have been known to cheat and just hold my arm up!!
It did take me a few weeks to get used to being easily contactable. Before the iWatch arrived there were times when I would miss an important phone call or not realise I had been sent an emergency text message that needed a reply asap. I am now alerted straight away and I have the choice whether or not to answer nowadays- normally because I’ve misplaced my phone somewhere!
Due to the fact I’m still using ancient analogues I am unable to sync the device- unlike with digital aids. From other blogs I have read I do understand there is a perk to having the speaker on the other end discreetly blue-toothed straight to the digital aid but it will take more than that to convince me to change. I am very much stuck in my old ways.
The vibration alert can be quite jarring so I have played around with the sensitivity levels.
When out and about I feel a lot safer knowing my phone is out of sight and tucked away in my bag. Using a white cane adds a vulnerability factor.
I have only been using my white cane for 6 months- since when I received the iWatch. It gave me the confidence boost to ‘come out’ and announce to the world why Im such a clumsy idiot. I say idiot because my pride and independence is incredibly high and I was in denial about the reality of how poor my vision really is. Being a mother of two young children meant I could no longer dice with my life everyday whilst navigating the high streets and roads.
When out and about in new places I use the google maps app, I don’t yet trust the hap-tics and will still check the screen at every turn or pulse.
When I was younger I used to be an Illustrator and now I have changed career and Im currently studying/training to be a Counsellor/Therapist. The iWatch is incredibly useful for client sessions. Not being able to see the clock straight away when I look at the wall I get flustered trying to locate it. Time boundaries are an important part of the therapeutic alliance so being able to use the timer on the iWatch to discreetly vibrate a few minutes towards the end gives me time to wind down the session without causing interference.
I also downloaded the app ‘Just press Record’. This enables me to record class lectures and client sessions for case studies at the tap of the button; which then streams via bluetooth directly to my iPhone. I can save the file on either device and they automatically sync. Its also audibly louder than the iPhone app ‘Voice Memo’ which makes a huge difference when Im transcribing.
Before the iWatch I had to ask a fellow peer to transcribe for me which was such a ball-ache making sure I was adhering to the ethical boundaries of confidentiality by gaining permission from my client during the contracting stage.
I was aged 14 when I was told I had Ushers Syndrome Type 2. I was devastated and my dreams for the future were gone in a single moment. Being faced with the bleak reality of slowly losing your sight would be hard for anyone, let alone a young teenager already struggling with typical teenage problems. As the years went by with the emotional rollercoaster of being registered visually impaired at 16 and then being registered as legally blind at age 19, I learnt how to be more optimistic as I grew tired of wallowing in self-pity and not taking opportunities while I still could see. I learnt more and more about the concept of accessibility and that I wasn’t as limited in my abilities as I once thought. I became more aware of the importance of accessibility to people like me, I got frustrated at the lack of it even in today’s modern era.
I have always been a fan of Apple products due to their settings, a whole subsection dedicated to accessibility with amazing features such as Magnifier, larger and bolder text and specific volume controls for hearing aids. Since the Molly Watt Trust has kindly given me an Apple iWatch Series 1, I have taken advantage of its array of features which has already made certain aspects in my day to day life so much easier. I recently took up running and it is much more convenient using my Apple iWatch which has a fitness activity app which helps me record my daily activity. If I have important incoming calls or texts when I’m out and about or running, then I can answer from my iWatch rather than getting out my iPhone which could easily be dropped. One of my favourite features would be the Extra-Large Watch Face which make it easier for users with low vision to see the time and means I can quickly glance at it when I am on the move rather than getting out my phone and squinting for the time.
Due to the Bluetooth connectivity between my iPhone and my iWatch, I can leave my iPhone charging and still go about my day with my iWatch as my calls and messages will also appear on my iWatch’s screen and I can answer them accordingly. Apple iWatch also includes a range of settings to meet the needs of people with a wide variety of sight loss not just RP. These includes Zoom, Grayscale, Reduce Transparency, Mono Audio and much more. These settings can also be controlled and altered through the Apple iWatch iPhone app.
The only downside with the iWatch is that it can drain a lot of battery life from my iPhone which means I have to charge both my iPhone and iWatch overnight but aside from that I think Apple has really pushed the boundaries of accessibility by designing their products to meet the needs of visually impaired users, the Apple iWatch Series 1 has ticked all the boxes for me.
When I first got my applewatch from the molly watt trust I was really excited, being profoundly deaf and registered SSI with usher syndrome type 1. I hoped the watch would enhance my life tremendously.Setting the watch up was easy, even with my limited vision and it connected to my Iphone easily too. I was so excited , it felt like it was my Birthday or Christmas.
I had just had surgery for a new cochlear implant after being depressed for many years, the applewatch came at a time of positivity for me, a time where I had decided I actually did need an implant to enhance my life and give me more independence, the applewatch was a real bonus.
The applewatch enables me to feel vibrations on my wrist if anyone texts me, I can now access all notifications, which is so much easier for me as I often don't have my iphone in my hand.
My mum panics if she can't get hold of me , she likes to know I am ok , safe and sound !! I have now had my applewatch about 3 months , besides the easy set up to iphone it also connects to my cochlear implant via Bluetooth. I experienced music for the very first time, it was amazing and I listened to different types of music to see what types of music to see what I liked the best. Shazam is a really good app because if I hear music I like but I don't know what it is then Shazam tells me and I can then download the song. It really helps me because I can feel the vibrations on my wrist, like an alarm.
I don't like to put my phone under my pillow or cushion as this can be dangerous but with the watch on my wrist I can feel any vibrations directly to my skin and it alerts me quickly. Because of my limited vision I often walk into lamposts or barriers or poles, especially if I have my phone in my hand while I am looking at maps and directions, however, my applewatch has made this much easier for me because now I just look at my wrist and I don't need to have the phone in my hand. I can check my phone through my applewatch without having to put my hand in my pocket to get my phone.
My new applewatch really helps with navigation and this will be even better when I get my guide dog as I won't have a spare hand for my phone.
I use the activity app to see how many steps and what distance I have covered, this helps with my wellbeing and it is much easier being on my wrist rather than on my phone.
Applewatch has really helped change my lifestyle for positive reasons, I worry sometimes when I am out on the streets , I am really independent but can't help but be a bit anxious on the streets with people stealing phones, applewatch means I can leave my iphone safely in my pocket, I feel much safer. I use it to check the weather too.
The TfL (transport for London app) and train line app is amazing , I can look at my watch and know what time my bus is coming , I can see any cancellations or delays, this is such a help as I can't hear announcements made by bus drivers or on platforms or bus stations.
My mum and my brother text me a lot , they worry about me , my mum panics if she can't get hold of me and I will see like 5 or 8 missed face-time calls on my phone, but with the Apple Watch I know straight away if they have texted me. I can adjust the vibrations and Taptics which is great, so if I'm chilling on my sofa and maybe tired the vibration can be changed to tapping on the wrist to feel it more.
There are so many exciting apps to try, the next one will be Uber. I often travel across London so if I ever get stuck I can use the uber app as I cannot phone and order a taxi.
I absolutely love my football , I can't wait for the season to start in a few weeks, one of the apps for the applewatch is to keep up with football scores and statistics of the match, this will help me a lot, as when I go to football it is very busy and not lit very well, so will save me getting my phone out and I can see all match scores and the latest football news on my watch. I am so grateful for this gift from the Molly Watt Trust.
I feel I would be lost without mine now.
I would recommend Molly Watt Trust to anyone with Usher Syndrome, this small charity is a great help to those with Ushers, not just for assistive technologies they fund but also for providing support, information and for bringing people with Usher together.
Thank you MWT
For the last two years I have raved about ReSound LiNX² smart hearing aids and rightly so, they literally changed my life.
I would be lying if I didn't say "REALLY" when I initially read about ReSound LiNX3D, however, I absolutely wanted to try them.
Anybody familiar with hearing aids knows that whilst a new pair can offer more long term the initial few weeks/months are not fun.
It is key that people understand that a new pair of hearing aids are not an instant fix. With every new pair of hearing aids - unlike the cochlea implant there is not a ‘switch on’ and you hear new sounds process. Most with hearing aids have experienced sound before, unlike many profoundly deaf and hence the differences in "siwitch on/adjustment." With hearing aids the brain and nerves literally work hard to process new sounds and it is both mentally and physically exhausting. I often have to explain to people the reason I am not hearing as well as before (with previous hearing aids) in the first few weeks is because my brain is in a state of confusion to sounds, kind of re-programming itself all over again.
As someone with such restricted vision and somebody who has benfitted enormously from LiNX² I did feel really quite anxious about trying ReSound LiNX3D, probably more anxious than previously however I absolutely wanted my chance to experience the very latest smart hearing aid technology.
I knew I would have to deal with some very challenging weeks whilst adjusting to the new hearing aids and that the confusion they often cause makes me feel more deaf than normal however the benefits do far outweigh this once the brain adjusts. A time to be very patient.
Picking up new and unfamiliar sounds are initially confusing and often hard to make sense of whilst the familiar sounds no longer sound familiar. The brain seems confused and in a state of learning and it can be very tiring, frustrating and annoying all at once on top of which it can be hard to have patience throughout this period of time.
Even before being fitted with LiNX² I remember feeling hope that these new smart hearing aids could make a real difference to my life. I desperately wanted them to work, to give me something more then my NHS hearing aids. Could something really be available in any way shape or form to really enhance my hearing and in any way compensate for my failing sight?
I remember the early days of LiNX² the whole "getting used to" process. Almost bizarrely I could immediately sense a new clarity in sounds that I found strange but exciting.
Amongst the confusion of the many new sounds I was experiencing for the first time in my life there were sounds that initially sounded like interference in my ear, a process of elimination by the three audiologist present revealed I was hearing sounds from outside of the room I was sitting in! I had never experienced that before, hadn't as much as considered it an option, yes, up until I was almost 21 years old I had not thought this was even possible - how much had I really missed out on over the years?
Also although the sounds were kind of coming at me at all angles I could for the first time follow a sound around the room. It made me feel quite dizzy but also fascinated.
The first month was a journey of emotion and discovery. Slowly I discovered so many new things, the voices of my loved ones sounded so different, so much clearer. The LiNX² connectivity to my iPhone and applewatch, the app enabled me to experiment with my hearing, adjusting bass and treble and also adjusting the smart aid capabilities in different environments it really was unbelievable. As a result of me being able to adjust my hearing aids as appropriate to my environment I discovered how much better my access to sound really was. I discovered 'hearsay and earwigging'. I sat on a train hearing the noise of the train but over and above that sound I could hear people speaking clearly even though I couldn't see them, I knew they were sitting behind me. It was both fascinating and strange in those early days.
I could now speak and hear clearly on my iPhone as sound streamed directly to my ears, I could hear things I had never heard before.
Those difficult, exhausting days of constantly scanning to find sound gone I felt connected to people even though I couldn't necessarily see them. Ask any deaf person how important sight is to their very being and you'll understand just how huge these things are.
I could write so much about these amazing smart hearing aids however I have written extensively about my LiNX² already and most blogs can be found at www.molly-watt-trust.org this one is my personal favourite: http://www.molly-watt-trust.org/component/k2/bali-sound-sensations
So, in April of this year I was humbled and flattered to be one of the first in the UK to trial the very latest in ReSound's smart hearing aid technology, ReSound LiNX3D, Whilst I was excited I was also apprehensive as to what more these hearing aids could offer, which shows just how happy I have been with my LiNX².
Whilst waiting on my fitting I had time to do my own research and the more I researched the more exciting ReSound LiNX3D became, however, I was not looking forward to that first month of aural confusion especially as my work agenda is now quite taxing. There would be no quiet time to aclimatise myself to new hearing aids this time!
Since wearing LiNX² my confidence and ability to work independently has led me to, with a little help, set up my own business as well as work tirelessly for my charity and championing accessibility and inclusivity for all.
My Dad took me for my first fitting of ReSound LiNX3D. Being deafblind mobility is another of the extra challenges I have to deal with. I was excited and curious to experience the many things I had read - could they really be as superior to LiNX² as I had read?
I was being fitted by a friendly familiar face at ReSound so I felt very comfortable.
The fitting did not pan out the way I thought it would. The first thing we established from an up to date hearing test was that my hearing had worsened, not a lot but every single decibel of loss can be multiplied over and over for somebody deafblind. I put on a brave face on the day but deep down I felt myself grieving for that loss. My ability to hear is what keeps me inclusive in a world that is more often dark than light these days.
I was hoping for so much from ReSound LiNX3D after my experience of ReSound LiNX² and after that bad news I was desperate for them to offer more to compensate for the added hearing loss.
The fitting went well and I could immediately hear differences and as exciting as it was I felt a touch deflated, such mixed emotions.
I had an emotional couple of days coming to terms with the fact my hearing loss had deteriorated however after allowing myself time and with the support of my family and friends I soon pulled myself together and started to enjoy experimenting with my ReSound LiNX3D. My life is full of challenge, this is just another one and totally doable.
Almost immediately I began experiencing new sounds and they seemed louder than the old sounds, it felt like my brain was working overtime to make sense of them, it really was hard work but the belief that once everything settled I would experience more positives than negatives even with more of a hearing loss gave me hope.
Never one to stay down for too long I immersed myself into work wearing ReSound LiNX3D.
ReSound LiNX3D come with a new app, the new app offers much more than the one for LiNX² so more to learn, more to experiment with, exciting.
This app, like with LiNX² smart hearing aids bluetooth connect automatically once paired to both iPhone and applewatch. Like the now previous app my most frequently used programmes were there: ‘All around,’ ‘Restaurant’ and ‘Outdoor’I found the familiarity comforting. Knowing the three programmes I use most are on the new app for me to use and alter accordingly to enable me to hear to the best of my ability. The new app has bass, treble, volume settings and newly added, further wind reduction settings on each programme, an inbetween bass and treble, a ‘Middle,’ setting that almost balances out both bass and treble when in an environment with poor acoustics.
The format of these settings has changed slightly and is now in graph form - using your finger tips you can fiddle around with ease to find the settings that suit you best. However, the icing on the cake really has to be the ‘Request Assistance’ option.
What does this mean?
I can now simply, request assistance using the app on my iPhone wherever I am. The benefits of this are enormous. Besides the fact I have the assistance of my audiologist pretty much at my fingertips any time and any place I may be. I no longer have to make an appointment to see an audiologist which can be several weeks away and for me at a clinic very hard to reach by public transport.
For deafblind people like myself mobility is challenging at the best of times but the thought of having to attend an audiology clinic with broken hearing aids some weeks later is not acceptable but something those with dual sensory impairment have to endure on occasion.
The reassurance I now have from "Request Assistance" via the app on my iPhone is truly priceless. Now if I am away working, which is often the case and for any reason I have any issue or concern with my hearing aids I can fill in a short but thorough questionnaire to set out my concerns (ie: which programme, which setting, which ear, how annoying etc etc) I can also fill in a personal message to specify my issues and this is sent direct to my audiologist who will pick it up and respond as soon as possible.
My first two and a half weeks with LiNX3D were for me more challenging than my first experiences of LiNX² I think besides the usual "getting accustomed to" period I was very busy with work so challenged in varying environments and wasn't used to hearing aids or the app as a result I did struggle more so contacted my audiologist who insisted he check my hearing aid settings.
A short follow up visit to my office and a check of my previous programme for LiNX² with a comparison of my new programme with LiNX3D resulted in a small tweak which appeared to literally be a few taps on a computer then almost by magic my hearing aids came to life.
Sat in the office concentrating hard on my audiologist all of a sudden became less intense as I could hear him without any problem. I also became very aware of the clicking of a computer keyboard behind me and I could hear the familiar sound of the printer printing to my left and also the gurgling sound of the water cooler beside me - this is more like it I thought.
I remember having a similar check with my LiNX² 3/4 weeks on and a few little changes making a big difference so perhaps normal to need that follow up.
I think changing to ReSound LiNX3D from LiNX² I felt more educated as to what could be achieved and so more aware of any problem, either way, I was sorted.
I left the office that day with guide dog Unis, I could not just feel her body close to me but I could hear the clinking of her lead and collar and her paws on the pavement beside me, I could also hear birds twittering on the roofs above me, I could hear the sounds of cars to my right and behind me. As I walked through the town I could hear voices, different voices, men, women and children. As I passed the coffee shop I could hear people talking and the sound of crockery, I couldn't see any of it as I walked looking straight ahead allowing Unis to do her job. It was amazing to be able to understand my familiar environment because of my hearing. The depth, quality and clarity of sound LiNX3D provide is incredible. As I passed the bakery I could smell fresh bread and to the side of the bakery is a bus stop, I could hear voices, clearly people waiting for a late bus. My walk home from the office was as though I was seeing new pictures in sound. Sounds coming from all around me and the beauty really was I could decipher the sounds and where they were coming from - my new journey of discovery had begun.
Some other positives are the clarity of speech streamed via iPhone and also music has much more depth than previously. I'm enjoying hearing music, lyrics and new sounds, I've discovered the sounds of different instruments that I'd never heard before, now just to educate myself on exactly what those instruments are!
I have since experimented with ‘request assistance,’ because of course if you have an issue - you send the message what happens next?
Well after sending a request a week or so after I had seen the audiologist with a minor concern, I received a response.
Here is the absolute "creme de la creme" my audiologist sends back an up to date programme for me to install. Clear instructions display on my screen: ‘Take out hearing aids, leave them on and leave near phone,’ and the programme re-installs onto the hearing aids with the necessary adjustments made by my audiologist externally. I could be in America or Australia in fact any country with wifi and have both assistance and solutions made via my iPhone. This service is second to known and truly priceless.
It is possible to restart programmes and request further assistance if necessary.
There are two relatively small negatives for me at this point, both of which could be perfected. Firstly the writing within the app is hard for me to access at times, lots of white backgrounds and fine print - this is very challenging with tired visually impaired eyes, would love to see an improvement here, good contrasts and dynamic text would be perfect.
Also it would be great to receive an instant response from the audiologist to confirm my request for assistance had been received rather than me keep checking the app which did get very tiring. Besides that, I have been totally impressed.
I have now been wearing ReSound LiNX3D for around 5 weeks and I feel the initial "brain strain" and confusion is over and I'm now enjoying the benefits of this incredible smart hearing aid technology.
I am able to use the app on both iPhone and applewatch to adjust my ability to hear in every different environment I might find myself in.
I loved my LiNX², they offered me more than I could ever have believed possible however I can now report ReSound LiNX3D have exceeded my expectations and not just because of the ground breaking "Request Assistance" but because this smart hearing aid is providing much improved clarity of speech, crystal clear in fact, also improved connectivity provides excellent access to all number of iPhone apps audibly. My days of not hearing or mishearing are very much a thing of the past.
I was diagnosed with Usher Syndrome almost 11 years ago - born severely deaf I have now been registered blind 9 years and whilst like everybody with this cruel condition I hope for a cure however, I am not hung up on finding a cure, I want to live my life positively and thanks to ReSound this is possible.
I am excited for the future because this incredible assistive technology keeps evolving and enables me to be an inclusive part of society. I simply want this for all living with the challenges of deafblindness.
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 ..