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Wednesday, 13 September 2017 14:43

Applewatch, I won't leave home without it

Hi Molly Watt Trust

I want to thank you for funding my applewatch.

I had so much catching up to do through the school summer holidays including  training with my new guide dog Twinkle, along with keeping my two children tkeep occupied.

Now I’ve caught up I can finally write my first feedback about my initial experiences with my applewatch, thank you so much for this genuine opportunity for me to own and benefit from it, I'm truly amazed by how it works.

Firstly I like the way you can change watch faces you want, I particularly like the motion ones that moves very pretty.

The activity app is brilliant tells me how many miles I've walked, how much exercise, movements and how long I've been standing through out the day and its rewarding you get achievements goals saying well done keep up the good work etc.

Its very encouraging.

I also enjoy the workout, outdoor walk.  I set up up so it is ready before I leave home and as soon as I get to work I stop it to see how many miles I've walked and my iPhone shows me my routes where I have walked its brilliant.

While I'm on the go my applewatch alerts me by vibrating on my wrist that I have received text messages and phone calls while I'm busy working my guide dog Twinkle, or at home doing things I need to catch up on. 

I now rarely miss calls or text due to the taptic alerts.  I am genuinely delighted with these initial things and already I feel I don’t ever want to leave home with out it.

I also really like the timer, so helpful to be alerted by vibrations on my wrist to home appliances that do have timer alerts that make sound but that I cannot hear.  It has saved me from burning or spoiling things I have cooked.  

I find I am more relaxed wearing my applewatch as I feel very contactable and ‘things’ are more accessible.

I'm learning new things every day with my applewatch.

I will send more feedback soon.

 Emma

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

 

Monday, 08 May 2017 19:19

Applewatch for kids

I recently received an email enquiry from the Mum of a 9 year old son living with Usher syndrome.  

I regularly receive email from others living with the condition I’m living with, however, this particular enquiry was interesting as it made me really think about exactly how useful an applewatch might work for a child dealing with the challenges of progressive blindness alongside deafness which all too often leads to lack of confidence, often mental health problems and isolation.

I had read a few write ups about applewatch and children but it seemed mainly older kids, old enough to have iPhone’s and ideas of how to use applewatch in school whilst their iPhone’s were not allowed in classrooms, typical kids trying it on but examples of kids still in primary school I have not seen or considered before!

I met this young boy, who we will call ‘A’ when he was 6 years old.  A typical lively young boy, full of life and energy.  The only difference was he wore 2 cochlear implants and used a little cane from time to time. 

‘A’ was coping well with his condition and his confidence was good at age 6, from what his Mum tells me at 9 years old he continues to be a confident and happy child.  His Mum had read my blogs about applewatch and thought it may well be very useful to her son, particularly because of prominent haptics.

I thought back to my own diagnosis and how I coped.  

Up until my Usher Syndrome diagnosis at 12 years old I too had been a very happy go lucky child.  Being born deaf and wearing hearing aids for as far back as I could remember.  Deafness was challenging but as a result of great support I was fine with it.  I knew my limitations and dealt with them, it was all I knew.  I didn't feel too different either as there were other deaf children locally that I knew and was friends with.  I had always been in a mainstream school environment and besides often being referred to as the girl with the hearing aids I was very accepted.

Sadly my happy school days ended after Usher Syndrome took my sight away so quickly and from great support at school to a real lack of understanding and as a result very poor and limited support.  

This situation resulted in lots of confusion which ultimately led to my confidence being destroyed, I became vulnerable, I didn't want to leave the house as I was clumsy, I walked into things and people.  The friends I thought I had either stopped calling for me or became bullies who made my life a misery.  

Going out and being a teenager became my worse nightmare as for me to do so I would have to use my cane.  I was introduced to the cane at 13 years old, I hated it because it was like a big symbol saying ‘look at me I am blind’.  The person who trained me in orientation and mobility was not familiar with me and whether she meant it or not was bossy and insensitive when I couldn't hear her instructions which made me resent having to have her or a cane in my life.

I just wanted to be like everybody else and I did not understand what was happening to me - I now know this series of events was the start of my anxiety, depression and self isolation back then.

I was happy enough when I was with my family and the few real friends I had but life could have been so much easier.

My traumatic experience resulted in lots of things including counselling which together with the best parental support and my arrival at a mainstream college resulted in me re-finding myself and the belief that not only is my life important but that my bad experiences could be used to help others avoid the pitfalls I had experienced.

I want things to be much better for the next generation and it really can be with know-how and the amazing assistive technology available to us, it really is life changing.

Back to the original question applewatch for children - I can visualise some real benefits particularly for ‘A’s age group.  I also see two negatives, but I believe they could be worked with or around!

The positives are first:  

It is my believe that applewatch can offer continuity in navigating a world that has become or will become more difficult with a progressive sight loss.   

Early introduction would avoid the difficulties I had to deal with in coming to terms with the many changes associated with progressive blindness.  

A young child could learn very early how to be safe, how to navigate the world using the awesome prominent haptic feature, alongside peers - early introduction of applewatch would actually be pretty cool, other kids would more likely take an interest in how the tech works rather than resort to the bullying and name calling I experienced. This way a continuity of inclusion and confidence would be maintained whilst dealing with a challenging situation alongside peers.

Children like ‘A’ could learn about good communication making full use of prominent haptics, receiving text messages, sending short messages, also receiving haptic alerts, then as he gets older he can remain even more in touch receiving email and social media alerts via his wrist, keeping him safe and independent. I believe this is just the beginning for prominent haptics. I am hopeful more and more will become available to access via applewatch.

Another very important point is ‘A’ can be tracked by his parents /carers so would be as safe as he can be.

Learning to use these skills is hugely important and should result in a continued confidence to maintain the happy go lucky nature younger children have.  

Parents will also feel more confident as their children will not just remain contactable via applewatch but also detectable via GPS.

I remember that first night I waited for darkness, I had had my applewatch for 2 days and wanted to put it to the ultimate test.  

I am completely blind in the dark, I prepared guide dog Unis, keyed a friend’s address into my iPhone.  This friend lives on the other side of town.  I carefully put my iphone securely into my backpack and set off completely relying on prominent haptics to find my way. 

My parents did not trust the applewatch (they didn't understand it) and questioned me trusting my newest ‘gadget!’  If I’m honest I really wasn't sure if I would get to my destination but desperately wanting it to work and desperate for independence I had to try it.  Guide dog Unis has kept me safe since I was 16 years old, she however can only take me where I ask her so for us getting to my destination was a joint effort, applewatch instructions to me via prominent haptics (vibration alerts) on my wrist and me instructing Unis in accordance with the vibrations, worked a treat and we safely got to our destination 20 minutes later.  I cannot tell you what that meant to me.  I cannot put a price on independence. 

Today I can only say thank goodness I was feeling brave that day as the enablement to get around safely has changed my life.

Prominent haptics have guided me safely around the world.

Applewatch enables people to get out and about once they understand and trust it’s unique navigation technology which has very positive effects on health and mental health.  For those with poor sight relying on prominent haptics also allows the eyes to rest.

Young ones need to establish these skills early on,  there needs to be continuity and some sort of normality in learning such life skills, I think applewatch could provide that.  I know I would have felt far better about myself had I been shown applewatch and it been used as part of my mobility training.  I was 13 when dealing with orientation and mobility and did have a smartphone, sadly applewatch was not available back then.  

This leads me to the negatives:  

I can’t quite get my head around a 9 year old having a £700/£800 smartphone to make this all work, however that doesn't mean the skills I mention above cannot be developed.

An applewatch would be far safer, secured on the wrist than a child walking around holding an expensive smartphone

A 9 year old should not be out alone so perhaps an idea might be that a parent/carer has the iPhone whilst the child wears the applewatch. 

The second negative is applewatch may be large on a small wrist, however there should be a way around that, perhaps a child sized strap.  

The parent/carer could spend time with their child teaching them about the benefits of applewatch, they could learn together.  I think this would give both parent and child confidence in both how applewatch works and also how incredibly useful and safe it will make their child’s life as they naturally become more independent. 

When technology is your only way forward it has to be a part of your life.

For me it has been the difference between doing something and not doing something and more importantly I am now somebody I want to be rather than  somebody I used to be.

Do I think applewatch could help ‘A’ and children with other specific needs?  I  absolutely do.

Tuesday, 15 March 2016 18:38

Applewatch - Thank you Molly

My son read Molly's applewatch blog to me last year.  She made everything sound so easy and to be honest I didn't believe it.

My son kept on and and and on about me getting one as I had become quite a recluse.

I could always find an excuse not to go out, my neighbours helped out with shopping and my son visits regularly.

I have had an iPhone for just over a year and learnt how to use it just by playing with it.  

A couple of years ago I was assessed by Guidedogs for a dog but was told I couldn't be considered for a dog until I had some sort of routine as the dog needs to work.

To be honest it put me into a state of depression and I withdrew further.

I was trained to use a cane some years ago but didn't like it and didn't feel I needed it.  I was definitely in denial.

Anyway, I had been unhappy for many years.  Usher Syndrome has isolated me and I let it.

My son advised me of the project Molly had put together through her charity and he more I read the more I wanted to give the applewatch a try.

I admire Molly, so young and doing her best to live happily and to help others, she is definitely an inspiration to me.

At 54 years old I am not an expert in technology but I'm learning and I quite like it, I have surprised myself with my iPhone, set up my own email and a few apps and games with a little help.

I decided to apply for the applewatch thinking I'd have no chance, as I don't have a regular routine, haven't even ventured to my local shop on my own for probably 5 years.

I'm sure there are lots of people hoping to get an applewatch and  Molly Watt Trust is a small charity and fundraising isn't easy.

When I got the email to say I had been approved for a watch and after a few formalities it would be sent to me I was in shock, I hadn't expected it especially as at this stage I knew MWT have asked for feedback to help with fundraising and I asked to be anonymous - it wasn't a problem.

I received my applewatch in January, it was like Christmas.  I charged it and set it up on my own, I fiddled around with it, sorted out the accessibility settings and changed the faces.  My son did help me with a few apps and applepay then he helped me set up a route on maps for me to walk on my own with my cane. He was more excited than me.

It took me 2 weeks to actually walk that route, I had sleepless nights thinking about it.  I was fighting with myself, I wanted to do it but I was frightened and hated the thought of being seen with my cane.

I planned the walk over and over until I finally took a deep breath and just did it.

The route was to my local shops, just over a mile a way.

At first I was really slow and apprehensive but the further I got the better I felt, the watch guided me with taps on my wrist for left and right.  I made it to the small supermarket and I felt so adrenalised I wanted to walk and walk.  All of a sudden I didn't care if people were looking at me, I felt confident, I felt great.

I decided to go in the coffee shop next door something I'd never have done for fear of knocking something over, I walked in, it was quite empty, I ordered my coffee and the young girl asked if I wanted to pay with my applewatch, I stretched out my arm and beep, done.

I sat down and my coffee was brought to me.

I couldn't believe myself, I was smiling to myself for the first time in a long time, I had done it and I did it for myself.

I text my son from the coffee shop, he didn't believe me so came and met me.  We both cried, silly I know but a big deal for me.

My son took me home and we talked about technology and how it can change people, enable people, just amazing.

That was the first time and now I go out everyday, I feel so much better for it.  No longer a prisoner in my own home, I can get from a to b fairly safely.  I do get a bit  stressed if it is busy so I avoid busy times.

For me this is just the beginning, I will contact Guidedogs for the blind again perhaps in the summer when I can say I go out regularly, we will see.

For now I just want to thank everybody at Molly Watt Trust for making this happen and for Molly for being such an inspirational young lady.

I will write again soon.

 

Wednesday, 09 March 2016 19:01

Effortless Applewatch One Month In

So I've now had my Watch a month and the best way I can describe it is 'Effortless.'

When I first got it all in its beautiful packaging it felt like Christmas again, all thanks to the Molly Watt Trust's GlobalGiving Project.

I was chosen as one of the first to trial this idea and wow I'm very thankful!

I Have Usher type 2 so born partially Deaf and now slowly losing my sight due to Retinitis Pigmentosa, that is Usher Syndrome.

I'm pretty much the worst for missing calls or notifications and emails simply because I don't hear the pings and don't see until I check myself usually just before bedtime.

Well since this lovely piece of tech came into my life that is now a thing of the Past....

'Haptic's where have you been all my life?'

So when I first got this all set up, I adjusted the font and display and synced to my IPhone 6, I turned Haptic's up and volume down ( I'm higher tone deaf so no point for me as I wont hear it) I was well away.

I downloaded some apps such as my Bank and Email also Around Me so I could use it with Maps to use as a walking Sat Nav, also BBC news app.

All of these worked well for me the At a Glance I found really useful as well as the Call Feature as when I'm on a bus or the school run it isn't ideal with Guide dog in one hand, child in the the other so now in an emergency with just a quick click and a tap or even a 'hey Siri Call...' at my wrist I could call for help without being at risk. That was a huge biggie for me.

However for me there is one very big FAIL!  It is not the fault of Apple or the Applewatch but my hearing aids, they do not work with Bluetooth, no connectivity so I can't hear directly to my ear so I found myself holding my wrist right up to my ear looking abit 'James Bond esk' but not a great feeling trying to juggle everything child, dog and school bags it was abit of a pain but as I say not Apple's fault but the Oticon spirit Zest hearing aids supplied by the NHS so no perks which a real shame as I feel I could probably gain a whole different view had I had the right equipment.

Any way a month down the line the applewatch feels great it's amazingly light and easy to forget it's on my wrist until I get the helpful Haptic's reminder of something in my calendar or emails, and even to navigate to somewhere new, very useful In busy town centres when I just need to go from A to B without scanning around which causes terrible eye strain and headaches, Applewatch has helped stop this, no more scanning just relying on a simple tap or taps on my wrist enabling me to simply direct my guide dog left or right accordingly.

Pretty awesome and effortless for me, my daughter likes the drawing bit in the contacts with those who also have the watch she thinks its magic and cool.

I know I have a lot more to learn about my Applewatch and I'm sure in the coming months I will have more to report.

I'm feeling more confident and independent and feel with this technology and my guidedog I can become ever more independent, maybe a part time job soon.

The only snag I have are these 'prehistoric' hearing aids. Having hearing aids with full comaptibility would be absolutely awesome, I guess a girl can dream!

That said I love my new watch, it is more than a watch and whoever developed Haptics - Thank you life is definitely a little easier. 

I want to say Thank you to to the MWT Global Giving project for this awesome gift!

Wednesday, 10 February 2016 20:46

Applewatch Awesome but Hearing Aids Disappoint

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 .

Disappointing.

Tuesday, 02 February 2016 15:05

Applewatch Accessibility and Connectivity

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.

 

 

Monday, 23 November 2015 19:28

A "Resounding" Success

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 

ReSound:

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.

Friday, 16 October 2015 18:40

Edinburgh Social Event 3 October 2015

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.

Wednesday, 07 October 2015 13:18

Usher Syndrome - The Importance of Acceptance

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 ..

 

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Bradley Timepiece - Usher friendly timepiece - Molly Watt Trust

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