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Molly Watt Trust

Friday, 26 October 2018 16:32

LiNXQuattro 'LiNX to Everything"

I have to admit that as time goes by, wearing high tech smart hearing aids has become just a part of me.  I imagine this must be how natural hearing sounds, if that makes sense! 

GN hearing’s assistive technology over the past 3 years has sort of become a part of my DNA, a real part of me, something I wouldn’t want to think about changing and for this very reason it’s almost trickier to begin talking about it.  Nevertheless I am going to try and share my recent experiences with the latest GN Hearing re-chargeable additions “LiNXQuattro”.

About a month ago when I was fitted with them https://youtu.be/I7oXcSy9EEA

I was not just excited to be receiving GN’s latest and most innovative smart hearing aids but also excited and curious that the hearing aids I was being fitted with would be the rechargeable version, I know to many excitement wouldn’t be a way of describing “rechargeable hearing aids,” maybe useful or maybe practical but for me being deafblind I was excited - no more fiddly tiny batteries, easily lost, often resulting in no hearing until battery found or shop found to buy spares!  As organised as I’d be I’m a girl, I change handbags regularly, have all sorts of things to carry and on occasion that spare pack of batteries I’ve fumbled around for in my bag have had all dead batteries!  Leading to frustration, anxiety, sometimes even panic when I’m in an unfamiliar area and “virtually completely deaf” quite frightening.

No more having to pack spare batteries or worrying I’d lose sound whilst out and about - it really is the little things!

Wearing two dead hearing aids would make me feel more deaf than I am without hearing aids at all so I’d even take one aid out to use the tiny bit of residual hearing in an exhausting effort to keep my baby toe in with reality - of course this was ridiculously unreliable because lets face it, I am severely deaf and registered blind I need and totally rely on my hearing aids day in, day out and I can say without question that since being fitted with GN LiNX2 followed by LiNX3D and now LiNXQuattro this incredible technology has compensated in a positive way for my deafblindness more than anything.  I’ve said it over and over and cannot stress the importance of this assistive technology it really is the “gamechanger”.

I’m going to begin by comparing my experience of having hearing aids with batteries and moving to rechargeable ones - shoutout to all hearing aid users : You know when you can tell your week is up and the sound quality starts to fade and you hear those beeps indicating you’re in need of a battery change? 

That feeling when you change the batteries, that fresh feeling, almost feels like your hearing has improved a kind of ‘fresher!’ hearing (I personally loved a good new pair of batteries, no hearing person could understand that satisfaction but WOW new hearing aid batteries!)

Well, with rechargeable hearing aids, a full, new battery every single day - “fresh,” “clean” just like new hearing aid batteries every day, what a great start.  A simple charge takes a relatively short time, I recharge overnight and throughout my waking hours use/stream without a care in the world.  I have got into the habit of taking the little charging unit with me but am yet to need it - better safe than sorry until I know exactly what these aids are capable of.

If you’re hearing I can imagine you might be struggling to empathise with this however I just had to mention that it’s a very noticeable improvement with these new babies and a perfect start!

Like previous models these “made for iPhone” smart hearing aids still have the ability to connect the dots between all my accessibility tools - the sound quality streaming has improved making listening to music and taking phone calls so much easier and more enjoyable.  I’ve experienced a new kind of sound quality, familiar voices have a different sound, I guess I’d describe as more of a richness, I’m picking up on things like expression of sound, sarcasm, exaggeration, pitch, those sort of things, things I’d never really realised I’d missed!

I love music, all sorts of music and since wearing LiNXQuattro I’ve begun listening more carefully and can pick out different instruments rather than just listening to words - before GN hearing aids I couldn’t decipher either.  I used to make up the words and think what I heard was how it was, WRONG.  Actually hearing was hard work and I’d rely on visual clues like lip reading and gestures, those days long gone along with my sight, how grateful I am to GN Hearing that I’m more than coping without visual clues.

I tend to use FaceTime to communicate with my friends, they seem to prefer it, not that they are deaf or deafblind, they just seem to be enjoy it more.  I can still just about make out their faces, but that said most important to me is the direct stream of sound whilst doing other things (I’ll often rest my phone against something while I’m busy) I can walk around the room and keep busy and talk with my friends as if they are in the room - I’ve never been so productive whilst on the phone before! 

The quality and clarity of sound has meant I don’t mishear very often, as a result I feel very confident in conversation not just with friends but with clients on the phone. I can still hear things around me like kettle, the microwave, the toaster - whilst on the phone. 

I have often rung my Mum for instructions on something or the other and put the phone down while concentrating on those. The hearing aids feel like an extension of me, they allow me to do more than ever before.

I continue to enjoy the independence to swap and change settings in the changing environments I find myself in.  Also to save hearing aid settings for places I visit regularly, it’s also pretty cool that the hearing aids remember settings for saved places.

I’m enjoying life with my rechargeable LiNXQuattro, that “Fresh Battery” feel, the rich way I’m experiencing sound, the seamless direct streaming is priceless, totally enabling.

My work involves lots of speaking and lots of listening at Q&A time which at one time I’d feel a little anxious about but not any more, my ability to access sound and to feel inclusive has had a massive impact on my everyday life, I’m anything but that poor deafblind girl sat in the corner. 

My confidence and independence is at an all time high and yes, I rely totally on assistive technology to live my life and of course, rely on my Guidedog for keeping me safe but it has to be said my smart hearing aids are without a doubt the “LiNX to everything”

I’d like to comment on the remote hearing aid repair but accept to say it’s an amazing as my LiNXQuattro are yet to let me down and judging by my previous GN smart hearing aids besides the odd tweak in the early days completely problem free, perfect performance.

When I peer into the mirror I see my right hazel/green eye.  Traveling downwards and towards the left I can see my nose then my mouth.  Following the nose upwards and then to the left I can then see my left eye.  Welcome to tunnel vision.

I am a daughter, sister, niece, friend, student, wife and mother.  I also have Usher Syndrome type 2.

My new 42mm Apple iWatch series 1 kindly donated by the Molly Watt Trust, arrived on the day of my Grandfathers funeral, a bittersweet moment.

I have been using Apple products for as long as I can remember so syncing the iWatch with my iPhone 5se was easily done. 

At first I was slightly daunted by the small screen and equally small symbols to tap to activate each app and I did wonder if I would ever get used to it.  The large watch face and its many options to choose from are easy to read and engage with.  The main one I use is the first option where the activity levels take up most of the screen and the time can clearly be seen in the top right hand corner.  

The activity circlet is quite addictive and causes my competitive side to try and complete each of the 3 sections on a daily basis.  There is a pang of disappointment if I don’t achieve this!

The iWatch is also incredibly bossy!

It likes to remind me to stand up if I have been sitting down for too long, every hour!  Having a 7yr old and 17month old means the the chance to sit can be a miraculous achievement.  I have been known to cheat and just hold my arm up!!

It did take me a few weeks to get used to being easily contactable.   Before the iWatch arrived there were times when I would miss an important phone call or not realise I had been sent an emergency text message that needed a reply asap.  I am now alerted straight away and I have the choice whether or not to answer nowadays- normally because I’ve misplaced my phone somewhere! 

Due to the fact I’m still using ancient analogues I am unable to sync the device- unlike with digital aids.  From other blogs I have read I do understand there is a perk to having the speaker on the other end discreetly blue-toothed straight to the digital aid but it will take more than that to convince me to change.  I am very much stuck in my old ways.

The vibration alert can be quite jarring so I have played around with the sensitivity levels.  

When out and about I feel a lot safer knowing my phone is out of sight and tucked away in my bag.  Using a white cane adds a vulnerability factor. 

I have only been using my white cane for 6 months- since when I received the iWatch.  It gave me the confidence boost to ‘come out’ and announce to the world why Im such a clumsy idiot.  I say idiot because my pride and independence is incredibly high and I was in denial about the reality of how poor my vision really is.  Being a mother of two young children meant I could no longer dice with my life everyday whilst navigating the high streets and roads.  

When out and about in new places I use the google maps app, I don’t yet trust the hap-tics and will still check the screen at every turn or pulse. 

When I was younger I used to be an Illustrator and now I have changed career and Im currently studying/training to be a Counsellor/Therapist.  The iWatch is incredibly useful for client sessions.  Not being able to see the clock straight away when I look at the wall I get flustered trying to locate it.  Time boundaries are an important part of the therapeutic alliance so being able to use the timer on the iWatch to discreetly vibrate a few minutes towards the end gives me time to wind down the session without causing interference.

I also downloaded the app ‘Just press Record’.  This enables me to record class lectures and client sessions for case studies at the tap of the button; which then streams via bluetooth directly to my iPhone.  I can save the file on either device and they automatically sync.  Its also audibly louder than the iPhone app ‘Voice Memo’ which makes a huge difference when Im transcribing.  

Before the iWatch I had to ask a fellow peer to transcribe for me which was such a ball-ache making sure I was adhering to the ethical boundaries of confidentiality by gaining permission from my client during the contracting stage.

It does come with its own transcriber option; but I would advise against using it because its rather unpredictable... but it can also be amusing if you are up for a laugh! 

Towards the end of last year I started communicating with Dan via Twitter.  Dan was working with Radio 4's In Touch and was keen to get me on radio to talk about Usher Syndrome.

As Christmas got nearer we decided to look at doing something in the new year. 

One of the programme producers was in touch by email and we discussed my needs and what I would speak about.

The date was set for Tuesday 20 January 2015.

The Radio 4 Studios are in central London, somewhere quite unfamiliar to me, it's busy and worse it was going to get dark!  Fortunately my best friend Kyra knows me well and is brilliant at stepping in to help when I need her.

For me planning ahead is very important, however there are some things I cannot plan and that does make me anxious.  I was concerned I would struggle to hear well enough to come across well.

Would the studio be dark, would there be bright lights shining at me, would the studio echo, would Peter White be too far from me for me to at least lipread a little, would I mishear - everyday concerns but when appearing live I was worried!

This is Usher Syndrome and I'm used to it but when I'm given the chance to raise awareness with a huge audience I want to get it right.

I should mention I did not have my new Resound Linx2 smart hearing aids back then.  They have certainly made a huge difference to my ability to access sound in the more difficult and challenging situations as described above.

Thankfully I was very well looked after by the staff at Radio 4, I got to meet the inspirational Peter White and Dan, who deserves a huge thank you - THANK YOU DAN.

This blog isn't really about me but about "Accessible Social Media" and how powerful and in this case, positive and for me, quite magical.

Without it I would not have appeared on Radio 4 without it I would not have found Dan and without my radio interview about Usher Syndrome and its many daily challenges I would not have reached an audience of millions including the man that is Andy Gill.

Andy not only found Molly Watt Trust on Twitter but has kept in touch and supported the charity since then promising to run The Great Northern Run for us and even though he is a very busy man, he is doing it exactly that.

I have to admit when I read his bio (below) I felt very humbled and a deep pride that this wonderful man, a complete stranger not only listened and took on board what I had said but has been inspired enough to want to help raise awareness and fundraise for the Usher Community - thank you Andy, I hope to be able to come meet you and cheer you on in September.

Andy Gill's Full Bio

On Tuesday 20th January I was driving to Swindon from Alnwick in Northumberland and if I’m not listening to some music I would stick Radio 4 on. Not that I’m an oldie or boring but they do actually have some good material on there that can take you through 200 miles without you realising.

Now on this particular evening I listened to an article on “Usher Syndrome”….. Obviously at first glance you’re thinking the same as me, it’s for those people who don’t like Usher’s music but that wasn’t the case. I am not going to go into detail as it would be worthwhile visiting http://molly-watt-trust.org/ to gain a more thorough understanding for yourself.

I was touched by the content, by the delivery, the honesty, openness, and felt that I had just been educated on the issues people with “Usher Syndrome” can encounter. Bullying, coping with people’s naivety to what other normal looking people can suffer from, lack of support from multiple education factions, and more.

Molly Watt took me on a journey that evening that truly pulled at my heart strings.

I for one didn’t appreciate that this is a progressive condition, however, it doesn’t take a genius to realise that without the correct support network of family, friends, organisations and people like me who stumble across the Radio 4 programme that evening, that people living with Usher Syndrome are living a tough and challenging life.

If I can do anything that makes the slightest bit of difference to Molly, along with other people who have this condition, then I will certainly try my hardest.

On the 13th September 2015, I will be running the Great North Run. Now on my previous 2 attempts I was thwarted in my efforts to break the 2hour barrier by changing my running pattern accommodate 1) a friend who wanted me to wait while he had a pee that appeared to take 20 mins…. 2) to run with my lovely cousin who I must say did absolutely great and I thoroughly enjoyed it even though I shortened my stride and I probably ran the equivalent in steps of 20 miles. Anyway, 2 great runs and both of them were for Children With Cancer or CWC @CWC (Twitter).

Last year I had a ballot place which I deferred to this year as I had work commitments that meant I couldn’t make it. So, rather than run for a recognised national/global charity I asked Molly if it would be possible to represent The Molly Watt Trust and I was delighted to say Molly kindly accepted and has designed and made up a cracking running top which I will wear with pride. I probably won’t achieve sub 2 hours but a lack of true training, new born baby, lack of sleep, I love my food too have all contributed to me remaining “HEAVY”….. I will however enjoy the day knowing that this little run, yes 13 miles, may have generated some additional funding for The Molly Watt Trust and in turn people who have Usher Syndrome may benefit in some way.

Now, if you’re reading this you may want to support me and make a donation or even set me a challenge by stating you will give more if I achieve say sub 2hr 20min for example. Be realistic!

Whatever happens on that day, however much I can help raise towards MWT I will continue to look for ways to support Molly and her trust.

What I will also say is you don’t have to have met Molly to support her. I haven’t but I feel there is a need to raise awareness of Usher Syndrome and the issues these normal looking folk encounter on a daily basis that we all take for granted.

PLEASE GIVE GENEROUSLY 

Thank you Andy

https://mydonate.bt.com/events/mwtgreatnorthernrun/242692

 

 


  

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