A A A Accessibility A A A A
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

http://www.mollywatt.com/blog/entry/my-apple-watch-after-5-days

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
brilliant.

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

Tuesday, 02 June 2015 18:24

Smartly Aided

I feel incredibly humbled to have been offered to try a pair of the most up to date hearing aids now known as "Smart Aids".

I want to thank ReSound for their kindness and I'd like to give something back, not just to them but to the Usher Community of which I am just a small part.

To ReSound I want to share my experiences good and bad so that they can perhaps take into account my findings as somebody with Usher Syndrome and that they can continue to improve the technology available to people like me.

To others with Usher Syndrome I'd love to help fund these via The Molly Watt Trust but without serious fundraising or some very generous donors it can't happen, I will however keep plugging away to try and help.

What I can do is use my experiences to at least advise those with Usher exactly what is available by way of technology.

I've put together this piece about my initial meeting with two fantastic audiologist at ReSound UK's Head Office in Oxfordshire.

My blog about the Linx2 Smart Aids, their compatibility with my iPhone and Applewatch and how this technology enhances my life will follow.

I recently blogged about my preference of twitter and a few reasons why.  Following on from those comments I have been very fortunate to meet with some amazing people since using Twitter as a networking tool to raise awareness of Usher Syndrome, it’s challenges and what we need to access the world.

One of many people who made contact with me after my applewatch blog was the inspirational Maneesh Juneja.  

Maneesh who is a Digital Health Futurist would tag me in various posts he thought might be useful to me and, excuse the pun, opened my eyes to both interesting and useful posts enabling me to research new things I might never have known about and to access and consider how these things could work for people with Usher Syndrome, deafblind, blind and also those becoming hard of hearing or visually impaired.

The main advantages I have found here are lots of the things Maneesh brought to my attention are mainstream and therefore do not come with the often extortion prices asked for specialist equipment for those with disabilities.

It is very encouraging that mainstream products are becoming more accessible to people like myself making us feel more inclusive.

I felt quite excited when Maneesh asked if he could meet me for breakfast and interview me about life living with Usher Syndrome and post the interview on his website, great for awareness in new fields of expertise http://maneeshjuneja.com/blog/2016/3/16/molly-watt-story-usher-syndrome 

Over the months Maneesh introduced me to quite a bit of interesting pieces of technology one of which I could immediately see some uses for people like myself.

At our breakfast meeting he brought along a few gadgets including the Ricoh Theta 360 camera which we had discussed online.  I could immediately see some uses of this camera for people with accessibility challenges.

The camera is small and easy to pair with iPhone (other smartphones too) and small enough to fit easily into my growing “accessibility kit”.

I decided I would try it at a recent Charity meeting.

At the meeting which was held in a local hotel there were 10 people, on a round table, at my request.  A round table enables me to communicate a little easier, a long table is very difficult for people with Usher Syndrome or limited sight and deafness as we cannot see either to lipread or hear well to communicate however with technology things are getting easier.

The acoustics in the hotel lounge were not ideal, lighting difficult and lots of coming and going - quite normal for most but a run of the mill testing environment for me.

I knew two people at the meeting and then seven strangers.  

We all took our seats.  I said my name and asked if the others would mind me using my equipment as it would assist me in accessing the meeting, it was not a problem.

I explained how my Multi Mic would allow me to stream sound directly to my Linx2 hearing aids blocking out background and that the Theta 360 would allow me to access a few things my limited vision wouldn't.  Firstly I would be able to take a picture which I could virtually immediately access on my iPhone enabling me to identify the faces of those sat at the table ‘name to face’ which would have been impossible for me otherwise.  The picture also enabled me to recognise where the emergency door was located, the bar, the toilets, also other walkways, and hazards like other tables or obstacles I’d normally not be aware of, really quite amazing to be able to scan my iphone screen and see so much, I was blown away as were the others at the meeting.

I had not until testing this camera realised how much I missed.

The meeting went ahead and again the Multi Mic was brilliant, I did not feel totally exhausted from concentrating on listening and trying to lipread, I was able to listen clearly and just scan my phone from time to time to put a face to each voice - yes, I was very impressed.

I have used Theta 360 to help familiarise myself with my surroundings and to give me more of a sense of atmosphere at an event. For someone with no peripheral vision, having various perspectives on one screen and being able to zoom and ‘feel’ my way visually and manually has helped me ‘gain,’ the power of peripheral in a way. It is not just a picture, it is an atmosphere. Having that in my hand on a hand held device (my iPhone,) gives me hope for those with lack of field vision still being able to have access to what is around them, visually. Even if I take a picture and save it to view later it helps me familiarise and capture a visual setting.

At last weekend’s Molly Watt Trust ‘In it Together’ event I took the camera and it was demonstrated to several with Usher Syndrome or RP and it’s benefits well recognised.

https://theta360.com/s/sn8m4b0wXRBjTiqRsPZoTsjtg

I feel very fortunate to live in a time of such innovating and enabling technology and I am very grateful to all who continue to follow my journey and to support in the various ways.

Thanks go to Maneesh and to Twitter for being accessible and enabling me to reach out, to tell my story, my passion of raising awareness of Usher Syndrome its challenges and how the world of accessible assistive technology can enable and enhance all including people like myself.  

Friday, 11 March 2016 15:15

The Missing Linx2

A few months ago I had what could have been a complete nightmare for me, I lost one of my treasured Linx2 hearing aids.

I was distraught, I felt completely unbalanced, unnerved and worse I feared how I would replace the missing aid.

Firstly I asked for help in searching for the tiny hearing aid in all the places I'd been along with my parents pulling apart our house as my poor sight is not very helpful when it comes to finding things, especially things so small.

I was devastated it couldn't be found and to this date has not been found.

I contacted ReSound and advised them I had lost one of my hearing aids and before I could ask about a replacement they told me I should not feel so awful and to visit asap for a replacement.

I cannot tell you how relieved I was.

A day later I visited the guys at ReSound who had a replacement ready for me, I was quite overwhelmed, however the replacement was a slightly different colour.  I wasn't overly concerned about that, just delighted to feel back to normal, however, the team at ReSound wanted me to have matching hearing aids so we agreed that on my next visit they would make sure a matching aid was available.

Several busy months passed including the rush of Christmas and I just got on as normal with my linx2, having odd colours didn't trouble me, they are small and barely show through my hair and if I'm honest I didn't see how different they were as my sight is pretty shocking, I'm at the stage where colours do tend to bleed into each other.

Just over a week ago I was booked in to see the ReSound team to talk about several projects going forward, a quick catch up on where I'm at and to be fitted with matching hearing aids.

I chose the pearly white colour, slightly easier for me to see being a lighter and brighter colour than the beige/skin colour ones.

Always great to catch up and lovely to have matching hearing aids again, however as I got home and tried to change programs I discovered my programs were gone.

Immediately I contacted ReSound who were unsure what the problem was but that they would see me as soon as possible, as it was a Friday I wouldn't be able to see anybody until Monday at the soonest so that was arranged.

It was at this stage that I realised just how much I had come to rely on the ability to adjust my hearing aids to the various different settings.

I work part time in retail and it's very busy at the weekend.  I struggled to hear the customers speaking to me, I did not feel confident in hearing what was being said to me.  The background noise was overwhelming, I had the most splitting headache when I got home.  I felt like I couldn't process the many sounds all coming at me.  To be honest it felt a little like the hearing I'd had with my old hearing aids, it was really hard work and exhausting.  

I realised how much these hearing aids had allowed me to rest my eyes and just relying on sound, I'd got used to that and now without the four programs I was used to I was really struggling.

I resorted back to trying to lipread which added eye strain to my headache.

After that day from hell I spent most of the next day in a darkened room without my hearing aids.

I felt completely shattered.

I have had my linx2 for 10 months now and after the initial 6 weeks settling in period I got used to this new way of hearing I had hoped to never look back.

This past weekend has made me realise there is no going back, I simply could not cope.

I rely totally on these hearing aids, they really do compensate as much as they can for my blindness.

Although I have not enjoyed this recent experience it is an experience that has educated me even more about the importance of the very best hearing aid technology for those with Usher Syndrome.

It reminded me how much harder I had to work with my old hearing aids and how different things are now.

I don't think people realise the huge impact blindness has on somebody already deaf.  The positive is assistive technology for the deaf has advanced and can enable fantastic access to sound.  There is nothing anywhere near it for the blind.

It always comes back to real awareness of the condition, not "I heard about it at university" "It's rare and I've never treated somebody with it before" "I've googled it" just three of the ridiculous things I've heard and it simply isn't good enough.

I'm one of the lucky ones to have the use of this amazing equipment, I think all deafblind who can benefit from these state of the art hearing aids should have them - here's hoping those that can will make it possible sooner rather than later, accessibility and is always key.

Pin It