A A A Accessibility A A A A
Friday, 03 July 2015 20:33

Tools to Navigate Usher Syndrome

I wrote about my very early experience with my Apple Watch and I'm continuing to use it, experimenting with the apps that I am able to access and those I think can be helpful / useful to me as a deafblind, guide dog owner.

My Apple Watch certainly isn't an expensive gimmick to me.

Taptics is definitely the most amazing accessibility tool for those with dual sensory impairment.

At the moment it is very rare to find anything with good accessibility for the deafblind.  Up until now it has been very much for the blind or the deaf and single sensory impairment consideration often does not work for those with Usher Syndrome.

Unis my gorgeous guide dog has made my life easier, making me more independent, she gets me from a to b safely, however, Unis can only go where I ask her to.

Unis knows familiar routes, which is how she is trained.  For instance if I walk to the end of the road and turn left Unis knows we are likely to be heading to the train station. To get to the train station we have to go via one of her favourite free run areas and if I have time I will let her have a run before getting to the train station, that's very easy for her.

If we turn right at the end of the road she knows we are heading to the town and possibly the bus station and that is also easy, like being on cruise control, however if we are going further afield Unis relies on me to give her instructions, that's when life becomes more challenging, we are both out of our comfort zone! 

I am safe with Unis but we might have got lost!

Most apps for the blind rely on auditory instructions so often not accessible to the deafblind. 

The deaf can see so would look at their phones for direction, plus the deaf can drive so mobility not the same issue as with the deafblind and blind.

I cannot express enough how important taptics are I just wish more of my fellow Ushers could experience what I'm enjoying. Sadly financing what they need is often the biggest access issue!

I spoke about my use of maps when I first got my Apple Watch and how I can now get around safely with Unis in areas I'm not familiar with which has widened my world.

Another navigation app was brought to my attention ViaOpta Nav which works on the iPhone and Apple Watch so I was keen to see how it worked in comparison to maps.

I always have to check settings first: 

Good that that there are different colours and contrasts, text to speech initial setting (normal) far too fast and no voice choice - immediate change to very slow which is much more appropriate for English speech in my opinion.

Accents are often difficult for me and many with deafness so a variation of voices could make life easier, at least one male and one female voice would be useful.

It is disappointing to not have a varied text size, unless I have missed it.

The light theme is good for me but unfortunately when setting the theme the actual "light" theme doesn't show until leaving settings - to set themes is the worse colour combination for me personally - white background with black writing, the glare from white background is unbearable, this is the case for lots of people with various types of blindness.

I found using the app very easy and useful for Unis and I, particularly that the app can advise of useful places around me and direct me there using taptics and it was fairly accurate too. 

It would be useful to have information about navigation on foot and public transport when going further afield.  I put in my Grandfather's address which is 198 miles away and the only navigation instructions I got were by car - I can only use public transport!

I would like more English terminology too, for instance transportation is very American.

I'm going to mention the variation in needs here as deafblind is very different from the blind.

When I was first diagnosed we were told to consider Usher Syndrome not as Deafblind but deaf, blind and deafblind, to give an idea of the complexity of the condition and I think that's very relevant when it comes to accessibility.

A blind person could use this app very nicely wearing headphones for the auditory commands via the phone, albeit they would miss out on environmental sounds unless using one earphone or could hold the phone for the sounds.

I'm not a fan of holding the phone for safety reasons. 

In my opinion the Apple Watch would be better but the blind would have a choice, however deafblind people would be relying solely on taptics so no choice, would need the Apple Watch (cost just increased).

There are varying deafness and blindness within the Usher Community so I can only comment from my own viewpoint.

I started wearing my Linx 2 hearing aids at the end of May.  Having worn hearing aids since I was 18 months old I coped fairly well until my sight deteriorated and then I realised how much my hearing had also relied upon my sight - I felt more deaf, the visual clues I'd relied on have virtually gone so I was sceptical but curious particularly because they worked with via Bluetooth with both iPhone and Apple Watch the two things I rely on most.

Not only have these hearing aids improved my hearing experience but have given me access to so much more that I couldn't access before. 

Previously my hearing when aided was ok but in perfect environments, quiet and on a one to one if not I could hear but highly likely to mishear.

With Linx2 not only am I hearing new sounds, I'm hearing much clearer sounds, in noisier environments and I'm so much more confident.

I would not have been able to access auditory commands and struggled to hear on the telephone, however I now have the option of hearing some instructions directly into my ears which has been a huge leap forward for me as I mentioned previously and I can now use some of the many apps designed for the blind, however it isn't ideal.

Being deaf and wearing hearing aids and listening is hard work and very tiring which is why we desperately need more apps designed more specifically to make life easier for people like me in mind.

I want to be involved in the world of the hearing and sighted, to help those with my condition as I believe we have so much to offer.

Few consider the accessibility needs of the deafblind, I guess that is why lots of us have become quite expert at adapting what we can and try to enjoy what is available.

What no hearing aids do is cure my deafness, without them I cannot access speech, so always remember aided I'm ok without I'm a different person!

I am, however, so grateful to be young enough to understand and access the amazing assistive technology available and I'd so like to help others in the Usher Community access it and help them learn how to use it and allow them the same opportunities as myself.

Saturday, 06 June 2015 18:30

My ears, my eyes, my Apple Watch

My whole life has always evolved around technology, starting with analogue hearing aids at 18 months in order to access sound.

I cannot imagine life without hearing aids, I've had them forever.  School was full of speech therapy, small group work and one to one with my teaching assistant, not forgetting my trusty radio aid that I needed to hear the teachers voice without background noise. I had to wear it in a bum bag that Mum kept as trendy as possible but there was no pimping the hideous wires that connected my hearing aids to the radio aid, I hated it but accepted it because even back then I knew if I couldn't hear I was excluded from normality.

At 20 I have been through several generations of hearing aids as technology has progressed.  I remember being in year 3 when I was one of the first in my area to trial digital hearing aids. That was the first time I heard birds, leaves crunching under my shoe and the sound of my coat zip, I was 8 years old!  I am totally reliant on my hearing aids to access sound, access that has allowed me to speak, to communicate with others, to have an active life within society.

I am particularly pleased to have, what for me, is the gift of speech as at 14 years old I became registered blind, deafblind.  My ability to use the visual clues the deaf community rely on were gone so the absolute reliance on my hearing aids became my lifeline to accessing and communicating with the world.

At 14 years old new technology became even more important for me to continue accessing the things I lost as a result of my blindness.
I have less than 5 degrees of vision in my right eye and just blurred vision in my left.  What that means is I now need all reading materials modified, I need magnifiers, I need decent light conditions, I need help with daily essentials, I need help with mobility, the list is endless and for all accept one of those things I rely on technology.  The only thing technology could never replace and nor would I want it to is my trusty guidedog Uni, that said technology helps us both.  Uni is my eyes when I'm out and about.

In my previous blog


I touched upon the unique taptic feature that really has become quite essential in my daily life.  Being deafblind as a result of Usher Syndrome has meant my sense of touch is very acute so taptics work really well for me. I've also found that for me the smaller screen of the Apple Watch works quite well with my small window of vision.

After a week or two of having the Apple Watch it was brought to my attention that there is a hearing aid, or I should say "smart aid" app available on it.  I researched the app and the "smart aids" ReSound Linx2 and was very impressed.

A pair of Linx2 and the Apple Watch could give me access to not just sound in a way I'd possibly not experienced but also to a new and unique control over the way they work.  Naturally I really wanted to try this new and up to date technology.

I was humbled to be offered to try the ReSound Linx2 "Smart Aids".

I know these are not the only hearing aids that can connect with iPhone via Bluetooth but are the first to connect to Apple Watch.
Connecting to the iPhone could mean I would be able to answer a call with the sound going straight into my ears, meaning the sound would be as clear for me as it can be, as if somebody is right in front of me.  What is even more important and exciting to me is the fact I could be able to answer my phone via my Apple Watch, meaning I could speak into my watch which would be secure on my wrist so my iPhone safely stored out of the sight of others.

I was really looking forward to meeting with the team at ReSound, good technology makes such a difference to my everyday life.  It almost seemed too good to be true that there could be something else that might enhance my life further but I wanted to believe it.

The thought that these "Smart Aids" Linx2 could enhance my hearing experience and work in conjunction with my Apple Watch was awesome, but I couldn't help but think "REALLY!" or was this an ask too far, a gimmick for the latest Apple gadget!?  I was hopeful all the same.

On arriving at ReSound's Head Office in Oxfordshire we were met by a very friendly audiologist Heather and a second, Graham, joined us. They spent a lot of time talking to me about my hearing, my condition and about my experiences with hearing aids over the 18.5 years that I've worn them.
They were interested in how I coped with my hearing aids and were very interested in how Usher Syndrome had effected me over and above my deafness over the last 9 years.  My blindness has made me feel more deaf not because I am but because my reliance on hearing aids together with all possible  visual clues like lipreading, facial gesture, body language, pointing etc has all but gone which just goes to show how important sight is to the deaf.

The deaf can hear with their eyes and some often communicate between each other using their hands and sight.  We then talked about the Linx2 "Smart Aids" and it was very xciting for me, these hearing aids could give me what my current aids couldn't!

After our long and detailed conversation I got to see and to hold the Linx2, "WOW" they are tiny and would be very discreet, I liked that, not because I'm embarrassed to be deaf/deafblind, just nice to have small and neat.  There was some computer programming and a good look at my ears to choose the right sized domes to fit snug in my ear canal and then time for switch on, I wanted to be calm and to not expect too much for fear of disappointment but I wasn't, I felt quite emotional to think I might now experience another enhancement to my daily life.

However, on switch on I was not hearing what I heard before. I was desperately disappointed and it clearly showed in my face. Heather and Graham reassured me not to worry as there were adjustments to be made to make the aids just right for me.  Having fiddled and tweaked with the sound levels I starting to hear and recognise familiar sounds, I started to feel excited again.

I was now about to experience some very new things, things I'd never experienced in my life, all 20 years of it!

Localisation would be invaluable, the ability to hear and know from where sounds are coming particularly useful being deafblind.  Hearing aids adjusted we began testing few things.  Initially I could hear my own voice, Heather's voice and my Mum's but not Graham's, so another adjustment was made as I needed more to hear the male voice better.  Once I could hear Graham he got up and walked around the room whilst speaking, I knew where he had been sitting but as he moved around the room and completely out of my small window of vision I was able to point to exactly where he was anywhere in the room by detecting his voice, I was blown away, I have never been able to do this!

My other hearing aids were great but whilst adjusted for me all they then did was magnify sound. I was beginning to learn that actually, my other hearing aids were giving me sound but not a realistic way of hearing.

The ReSound Linx2 "Smart Aids took me longer to get used to than I had thought, my brain had to get used to not just new hearing aids but to processing new sounds, sounds I'd never heard before and the new sounds initially seemed louder, I think that was just my brain perhaps querying them while trying to process them. It's been quite a learning experience for me.

To give you an idea of how important being able to localise is, I'm going to share a terrifying experience that happened to me a couple of years ago.  I was walking down a quiet street with my guide dog Unis, we walk at a fairly quick pace. Suddenly Unis stopped abruptly I knew she had alerted me to something but until I had turned my head to scan around me I hadn't seen or heard a lorry reversing from my left side virtually an inch from my nose. I'm told there was a beeping sound coming from the lorry but I couldn't hear it, in fact outside on a windy day I cannot hear much at all, just muffled sounds, no idea what or where the sounds come from. Outside is a very dangerous place for deafblind people.

Unis saved my life that day.

The ability to localise means I have awareness of what is happening around me. I feel safer, there is no price for that.
My confidence has improved and as a result I feel even more independent.

I took a trip to Reading on the train to meet friends soon after getting my new "Smart Aids", it was very strange to say the least. I could hear the sound of the train, I could hear somebody's music behind me, I could hear a window rattling and could also detect exactly which one it was!
I'm sure it doesn't seem a big deal to the hearing community but to me it was incredible, at 20 years old I'd never experienced these things!
On arrival at Reading Station I went to wait for friends to come and find me which is quite normal. I perched outside the station where I thought I had my own space, I could suddenly hear a group conversation behind me which was going on in a pub garden. It's was outside, it was a group of people, I had my back to them, I couldn't  believe what I was experiencing!  Where once I would have felt in my own quiet world, I now find  myself in a world full of sounds, both new and clearer sounds. Being able to pick up a real live conversation happening behind me was something very new. I'm told this is "hearsay" or "earwigging" again at 20 years old I'd never experienced it and it's been quite a fascinating discovery, I like it!

Another example of a new experience:
Coming out of the gym and into the ladies changing rooms one day, it was quiet. I walked my normal route to where my locker was and I could hear music, a lady was in the changing rooms wearing earphones with what sounded like loud music. Mum was always the one telling me I had my music too loud when wearing earphones and it used to irritate her so much and I never understood why. NOW I understood. How irritating!!

Anyway, back to the ReSound meeting.  Heather and Graham were amazing and so patient, there was quite a bit of fiddling and tweaking my Linx2's to make sure I was happy, please see my you tube clip http://youtu.be/BC4ntqDNR9c for full details.

We then looked at the connecting the "Smart Aids" to firstly my iPhone which was easy and the functions on the app very cool, for the first time in my life I would be able to control my hearing aids, I could adjust volume, change settings depending on environments, remove wind noise a huge help when outside and via Bluetooth control my wireless accessories and much much more but could this be done on my Apple Watch, this I would need to set up and control myself.

On leaving the ReSound Offices and within 15 minutes I had my Apple Watch set up and it was a real "WOW" moment when I made my first call to my Dad, via my Apple Watch, his voice came straight into my ears, he sounded different, so much clearer than before, it dawned on me, I'd never heard my Dad's real voice before, my Mum, ever faithful support and chauffeur sat beside me sounded totally different, even I sounded different to myself, it was strange, very strange, hard to process but it made me feel so emotional that day, day one, I was experiencing so much, new things for the first time ever!

I spoke into my Apple Watch talking to my Dad, it was quite amazing, my iPhone was safely tucked away in my bag.
On our journey home I discovered the bass and treble adjustments, I'm a little embarrassed to admit at 20 years old I didn't know what they meant, why would I I'm deaf and my hearing aids had always been set up for me!  I learnt male voices are more bass like and women's more treble, these two adjustments have been interesting for me and in the first two weeks I've fiddled with these the most to find what I like and I've discovered I prefer different setting of these functions in different environments.  I'm not a fan of too much treble in any environment it often makes things sound too tinny to me.

I love that I can hear my music without any wires or headphones, completely wirelessly and by Bluetooth my music goes straight into my ears via Linx2 Smart Aids and again for the first time I can decipher some words in music, which is awesome.

Having the app on the Apple Watch means when I'm out and about and at my most vulnerable I can make necessary adjustments and work Unis which really is a two hand job, I never miss a call and I can actually hear properly - it is true to say I do look a little strange talking to my watch but I don't really care as I'm accessing sound in a new and exciting way, I'm safe and I'm independent.

Just over two weeks of getting used to the Linx2 I had my second appointment with ReSound to see how things were going.
We discussed what I liked, what I didn't, how I was coping and even more exciting, there were new programmes I could try.
Three new programmes were set up along with my default one which is a kind of everyday one and I have got used to it

Restaurant - in a busy situation where I can hear noises everywhere but am struggling to focus on my own conversation I can select this programme to reduce the background noise and put focus on what is happening in front of me, allowing me to access speech as well as noises in a busy environment.

Traffic - Again in a busy scenario, maybe in a car on the motorway, this programme can reduce certain sounds. 

Outside - I can adjust to this when out and about to restrict environmental sounds that hamper me hearing traffic and important things that can keep me safe.

All of these programmes I can access on my Apple Watch and adjust on my watch at any time and keep my iPhone safely out of view.

These hearing aids are "SMART", they offer the most up to date wearable technology and are 100% compatible with iPhone and for me, more importantly the Apple Watch.  Together they are making my life much more accessible and safer.

I am very excited about the coming weeks and experimenting with the new programmes I have so will keep on blogging with my findings.

I guess to sum up to date, since 24 April when I received my Apple Watch I have found a completely new way of dealing with my everyday challenges. The watch allows me to get from A to B safely with Guidedog Unis using maps and taptics. My friends who have Apple Watch can get my attention using taptics even if I cannot see them, which is more often than not but by using taptics it alerts me, is comforting and keeps me safe and confident in situations where previously I may have felt vulnerable.  More and more of my friends now have Apple Watch and we have developed some basic codes to communicate by messaging on the small screen and of course I'm alerted by the vibrating which is

Now I have the Linx2 Smart Aids I can now access even more as I can hear more which means I'm now able to access some useful apps available to the blind as I can now follow some audible instruction where as previously if I was in a quiet room I might hear an instruction, however it would be highly likely I'd mishear and therefore not be able to follow instructions successfully.

When I go to bed at night the technology I enjoy during the day comes off or out and when I close my eyes for sleep I am back to the person I was born "Deafblind" because of "Usher Syndrome" but the minute I wake I know I have Unis to keep me safe and amazing technology to help me deal with my daily challenges and I hope those involved in technology continue to improve their products and to make them accessible to all.

So, to family and friends no more talking behind my back and thinking I won't hear because there's every chance I will!  Also thank you to ReSound not just for the opportunity you've given me but for your time, interest, professionalism and for allowing me to further access a world I'm struggling to see but refuse to give up in.

I'm not going to mention any personal wish list but just to say I hope the powers that be see my blog and consider every single person with Usher Syndrome reliant on hearing aids and to consider what a huge difference these "Smart Aids" can make to a persons every day life..

If there is anybody reading this blog who would like to make a difference to people living with Usher Syndrome please consider donating to my charity www.molly-watt-trust.org

I should make people aware of the type of blindness associated with Usher Syndrome is called Retinitus Pigmentosa (RP). The characteristics of RP usually start with night blindness, followed by a progressive loss of peripheral vision, so tunnel vision and what we see varies in different light conditions too and not just light to dark but from room to room, outside to inside in brightness and glare, environmental changes that just happen, yes, it is a nightmare! Of course I'm no expert on these things so the following is me talking about myself and just an outline for those reading my blog. Again everybody with the condition is different, I was very unlucky to have been registered blind or I should say registered Deafblind at just 14 years old and being already deaf it was the most distressing time of my life - that's possibly a blog for another time. Anyway, the loss of sight has to be one of the worst nightmares for somebody already deaf. Not only did I lose my sight within two years along with it went all the visual clues I relied on to hear, lipreading, facial gesture, body language - it felt like I was more deaf. The irony that I was often told "Molly you've got eyes in the back of your head" so observant was I! The level of concentration required to carry out everyday things is exhausting having Usher Syndrome and I can have days and days of migraine and sore eyes, but it's just become part of life. Back to what I wanted to blog about: Molly with Usher Syndrome / Deafblind I had to learn to use a cane, I hated it and by 16 years old I became a Guidedog owner. To get the independence I desperately wanted I had to learn to trust others, rely on others including my Guidedog Unis and technology, it did not come easy! That was then, now at 20 years old I have accepted that I need help but I like it to be as discreet as it can be and I feel lucky that there is good technology out there, often accessing it is the difficult part! I guess lots of you will remember my blog "My Apple Watch after 5 Days". For me it was a lot about, awareness, accessibility and independence. I therefore decided to leave the watch at home after 10 days and to carry out what would be a quiet day for me on a regular route that I would have no problems with Guidedog Unis. I found myself constantly looking at my wrist and strangely felt vulnerable as I immediately went back to holding my iPhone in my hand for fear of missing messages which I had gotten used to feeling on my wrist. The more I looked at my wrist the more anxious I became! Very strange. By the end of the day I had a terrible migraine and very sore eyes. It was then that I realised I had not had a full on migraine since I had been wearing my watch. Having thought about it a lot and of course going back to using my Apple Watch I believe the "no major migraine" had been since using the watch! Maybe it's coincidence, only time will tell. Funny I had thought the small screen of the Apple Watch, even though I chose the bigger of the two available, would have been a major issue for me, however because what I see is the equivalent of looking through a straw the screen is actually better for me than even that of my iPhone. I do not have to scan so much for information, glancing is actually easier on my eyes particularly as I have adjusted down the brightness, made the text bigger and use zoom. Surprisingly 10 days was all it took for me to become pretty reliant and attached to my Apple Watch. I'm very excited to have the opportunity to try ReSound Linx2 hearing aids from next week as they are said to be the first "Smart Hearing Aids" fully compatible for iPhone, iPad and Apple Watch. For those interested, I will blog about how I find the new hearing aids but it probably won't be for a few weeks as new hearing aids take some getting used to. Watch this space.