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Friday, 20 November 2020 14:31

The Colour Palette of Hearing - Resound One

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Ok so finally I can write my first Resound One review.

On 3 September I was fitted with my new hearing aids.  For me it always takes a good few weeks for my brain to embrace new hearing aids.

As many of you will know I have been on a smart hearing aid journey with GN Hearing for over 5 years now.

In that 5 years I have experienced a revolution in hearing and sound enablement that has changed my life.

As I’ve waved goodbye to most of my useful sight I have benefitted from the invaluable gift of sound. 

As a creative person I’d describe hearing with Resound One like peeling an onion, the more you peel the deeper you go and the more you might cry but tears of happiness and the artistic person in me describes the experience as hearing in colours, just about the entire colour palette.

Resound Ones together with the ability the app provides for change/variation in different environments have provided a new clarity in layers of sound. 

A good example of this would be a noisy outside environment (in other words a nightmare situation for a deaf person, even worse for somebody deafblind) - there is ongoing building work near where I live, lots of drilling, banging, thumping sounds and yes I can identify those sounds now, something I would never have identified some years ago, I can now thankfully hear all that racket as background noise and on walking past I can hear builders chatting and I know from what direction those voices are coming but I cannot see the builders - they swear a lot!

When I walk with my guidedog at night I am very comforted and feel safer knowing I can hear what is going on around me as I cannot see a thing, the joys of Usher Syndrome.

It’s been a strange year for us all but I have taken the time through the first  lockdown to really appreciate the gift of hearing, this was with LiNXQuattro.  Closing my eyes in the summertime I experienced silence, only interrupted by bird song, I was surprised to realise all birds sound different, yes I know, it took me until I was 26 years old to appreciate that!

More recently I was struggling with a migraine, usually I’d retreat for peace and quiet and remove my hearing aids, on this occasion I laid on my bed listening to the rain fall and the wind whistling around outside my window, it was so peaceful, one of the most relaxing things I’d heard, quite therapeutic and unbelievably for me I fell asleep wearing my Resound One hearing aids, I never ever sleep in my hearing aids but just shows what I’m getting from them.  Silence when I need it, relaxation when I need it and excellent amplification when I need it.  To add to that experience when I woke up the next morning my hearing aids still had enough charge to see me through the rest of the day which really is quite amazing.  I cannot tell you how relieved I am to not have to faff around with tiny batteries, anybody living with Usher Syndrome will tell you how challenging they are having little useful vision.

Another thing I have really appreciated now more than ever is that having access to speech and sound has enabled me to continue working remotely.  I hear well so well via Bluetooth connection to the various enabling assistive tech I am totally reliant on daily.

It is still early days for me with Resound One smart hearing but I’m sure as life returns to some sort of normality more benefits will emerge, but for now I shall enjoy each and every colour of hearing possible.

 

Wednesday, 18 November 2020 12:50

Covid Challenges and Solutions #DoingItAnyway

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I was so excited about 2020, it was set to be another full year, lots of exciting projects, lots of learning, lots of educating, lots of travel, a new nephew and my own flat. 

Instead it’s been a year of cancelled travel, a bit of furlough, lots of remote working and learning, two nephews and here’s hoping that new flat happens too!

I still learnt a lot, observed a lot and looked to solve some covid related challenges for those around me.

Before Covid hit I had again been nominated for a couple of awards this year, I never win anything but it’s great to be recognised for the work I do in trying to make an overall difference to others.

On the whole I have worked remotely, which is much easier for me.  However I have missed seeing my work colleagues scattered all over the country and world.  I have missed having to be organised, timing trains, organising accomodation, walking in the rain with guidedog Bella , laden with backpack full of all sorts including dog food!  Feeling tired, weary.  The stress of airports and air travel, I've realised as much as it causes me anxiety I do it and I miss it, infact I have missed the daily challenges of being me!

Today’s blog is very much about my thoughts on how Covid 19 has impacted on us all. 

I wanted to talk about five things I live with every day since my Usher Syndrome diagnosis at 12 years old: 

Isolation
Stress
Anxiety
Uncertainty
Challenge
Sound familiar?

I think people like myself had a head start on this resulting in us being in a position to support others.

I have, in a strange way drawn strength from this in the belief that now majorities are experiencing what is often my life they will, when the struggles of Covid die down, empathise more with those who live with challenges every day!

When I look back to March and the fear of that first lockdown I recall using skills I have developed because of Usher Syndrome to help others, be more accessible via technology. 

Of course I was not the only person doing this but being an early adopter of assistive technology and social media for learning and socialising it was great to see all generations wanting to embrace what is possible rather than what is not, an ethos my parents have drummed into me over the years.

I spent several days on and off talking my 81 year old Grandad through how to use FaceTime groups and Zoom, he found it all very confusing and stressful but he also showed determination to work it out so he was not so isolated.  Living on his own 200 miles away me and my parents were worried about his mental health.  I was so proud of grumpy old Grandad’s determination, just shows you’re never too old to learn new things! 

I recall the fear and anxiety of others scared to leave their houses, yes, I’ve been there too.  When I was just 14, I was registered blind and fearful of leaving the house.  As a deaf person I did not feel overly confident out on my own and as a result tended to have a small circle of friends and if out would invariably be with one of them.  However, going from being deaf to deafblind at such an early age I learnt an invaluable lesson, true friends are hard to find!

Matched with my first Guidedog Unis at 16 I was able to go out but my fear of the outside world not being able to see or hear particularly well only fuelled my isolation and as a result of Usher Syndrome, deaf blindness I fell into depression.  I imagine many have felt like this since ‘Social Distancing” became a thing.

My whole world and dreams fell apart.  The regular inference from professionals that I would make little of my life allowed me to feel stressed and anxious about the future and it took a long time for me to realise that yes my future may well be uncertain but I will be the judge as to how far I can go.

Challenge is all I know, I am very aware that in many things I do I must strategise, I must find my path and that dwelling on the negatives of the past is destructive and wasteful of my energy which only holds me back.

The many disappointments I experienced through senior school education and further education were painful and unnecessary, but they have taught me valuable lessons. 

Irrespective of what the so-called professionals have said I am very capable and here I am.

I cannot say I have escaped Covid without anxieties.  Social distancing remains impossible for me and my guidedog Bella. 

There have been terrible stories in the news about those who show little or no empathy for those of us who cannot see or hear properly.  It is totally understandable to not want strangers within 2 meters but surely with common sense the sighted could avoid this happening.  It’s a double edged sword for the deafblind, we also have to deal with the dreaded face masks, most of which deny us access to communication, why not use accessible face coverings, available here: https://shop.molly-watt-trust.org 

Perhaps take the challenge, walk around outside, near the public in the dark with your eyes closed and ears blocked, it’s fair to say you might well struggle with what is being asked and might consider moving aside next time you see somebody struggling, in the interest of us all being covid safe.

On the whole I have been ok throughout this scary time but I certainly now have some anxieties about when some sort of normality returns, but I know with Bella at my side I will overcome these things and hopefully more exciting projects will come my way, more travel, more learning, more educating perhaps not more nephews or nieces just yet but here’s hoping moving to my new flat actually happens!

2020 we are done with you, here's hoping 2021 is a big improvement for us all. 

Tuesday, 17 November 2020 14:02

Me and My Multi Mic

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When I first got my Resound LiNX Quattro Hearing Aids, I had the privilege of getting a Multi Mic too which I’m so happy and  excited about because it really has made my hearing experience at school so much better!

I’m in year 11 now so it’s my final year where I have got lots of exams coming up so I really need to hear everything the teachers and students are saying at all times.

I’ve now been using this mic for a few months and all I can say is WOW!! It has really changed my life at school! I can hear the teachers so much more and better than I could before using my old hearing aids and a Roger pen and the sound is just unreal.

One of the things I really love about the Multi Mic is how I can turn up and down the sound, which is especially good because all teachers voices are different so I can turn the mic up if I can’t hear them or down because I find their voices are loud.  What is also amazing about the mic is that I can turn the surrounding noises up or down on it to!  

In different classes the general atmosphere is louder or quieter and previously I would just have to listen to all that and the teacher which I struggled to hear, whereas now I can turn the teachers voice up or the atmospheres voices down which has helped me so much because now I can hear everything I want to. Another thing I find amazing about the Multi Mic is when I’m doing group or partner work at school, and I can place the mic on the table and listen to all of the people around me when I talk, which is really amazing because then I can hear and concentrate on what they’re saying while others are talking around me! This has really helped me because it’s made me feel a real part of group work now.  I don’t have to keep asking them to repeat what they’re saying anymore because I can hear them talking straight away.

I feel I've grown in confidence a lot more to talk to other people and actually hear them better during group work or partnership work. So thanks to my Multi Mic has made me come out of my shell a lot more and helped me communicate with a lot more students at school. So thank you to The Molly Watt Trust, GN Hearing and Sarah at Correct Hearing for showing me how it works it really is helping me progress at school. 

Tuesday, 17 November 2020 13:35

My New LiNX Quattro Smart Hearing Aids

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Hello everyone! Hope you are all doing well. Wow it feels a little weird writing a blog again, I haven’t wrote one in ages! However, it feels sooo good to be back and I can’t wait to tell you all about my new hearing aids! The reason why I haven’t wrote a blog in a while is really because I haven’t had anything to write about, which probably seems weird because it’s been 5 months since my last one, so it would probably seem like I’ve got loads to tell you over the last few months but really I haven’t. Due to this whole lockdown there have been a few struggles due to appointments being cancelled and my mental health hasn’t been great, but I know I’m not the only one! So I’m definitely not alone, however, we have FINALLY come back to some normality which is amazing and I’m so glad to be able to live a normal life but with a few exceptions again. Now things have gone back to normal, I had my first appointment for my AMAZING new hearing aids which I can’t wait to tell you all about! So, get comfy, grab a little snack and let me tell you all about my journey of getting my new hearing aids...

 

Let’s go back to the beginning. I was born with moderate to severe hearing and I wear hearing aids in both ears to help me hear. I used to wear all sorts of different hearing aids but my first ones that I got when I was a baby were tiny! Seeing the size difference from my last hearings aids before these ones was eye opening! I didn’t know how much your ears grow haha! My last ones before my new amazing hearing aids were called Sky V from Phonax and to me, getting fitted with these hearings aids was back then unreal because I could hear more new sounds such as hearing ‘s’ more, so when people said words like spider for example, I would really be able to hear the s and I would get my mum to say words with s in over and over again because it was so unreal to hear that one new sound. So I did feel very lucky that I was able to hear unlike some people who can’t, so even though I am deaf, I can live my life like others can. One of my amazing talents that I learnt ever since I was little was lip reading which is basically to read people’s lips. Which helps me to pick up words from your lips and for them to go into my brain and then to my ears which is really amazing because it really helps me understand and hear what you are saying. But since I’ve been diagnose with Usher Syndrome, which I’m sure many of you know about, but if not please read my first blog called My Life With Usher Syndrome where I tell you all about my story of being diagnosed with Usher Syndrome. I’m not going to lie to you I have been really worried ever since I’ve been diagnose with my Usher Syndrome that even though I have good hearing aids, when my eye site does go I won’t be able to lip read which is scary because I really rely on that to help me communicate with people. So that has really got me sometimes when I have been thinking about the future. However, the most surreal opportunity came my way and honestly it has changed my life! So let’s get onto my new hearing experience! 

 

So, where shall I start haha?! Basically the most amazing Molly Watts Trust contacted my mum and asked me if I would like to try these new hearing aids called Resound Linx Quattro and OMG I felt the most luckiest girl in the world when my mum told me. I knew these hearing aids were really good because I followed Molly from the Molly Watts Trust and some other people’s journeys getting these hearing aids and all I heard was amazing things about them and how they have changed their lives! So, I couldn’t wait for the experience of getting them. I was going to get them at the beginning of this year but due to COVID appointments got put back a number of times and I was really starting to loose hope of me ever getting these hearing aids which made me very upset because I just really wanted them soooo badly! But after a few months and lockdown died down the date finally happened the 17th of September was the most emotional, but in many good ways day of my life! I finally got them! One of my dreams came true and honestly I felt a million dollars!! I went all the way to Nottingham with my mum and dad and we met Molly and her mum Jane from the Molly Watts Trust and went to Correct Hearing where I met a lovely audiologist called Sarah and I was a little nervous meeting a new audiologist because I was really close to my other audiologist that I had ever since I was little and she really looked after me and cared for me which meant a lot! So I was a little nervous but really there was no need to be at all! Sarah made me feel so comfortable and welcome and honestly she felt like a member of the family as soon as I met her. So I can’t thank her enough for fitting me in and for fitting my hearing aids for me. I was sooo nervous when my new hearing aids went in my ears and before they go switched on because I kept thinking omg what if they don’t work? What if they don’t sound right? What if I can’t hear anything from them? But OMG I had nothing to worry about! As soon as Sarah put the hearing aids in my ears I could hear EVERYTHING! I could hear cars going past that were outside which I could never hear before, I could hear my Mum and Jane talking at the same time and could listen to both of their conversation over the other side of the room also I could hear the door opening and shutting from other rooms that I couldn’t even see inside the building. I could even talk on the phone for the first time! All these things I could never hear before just made me flood into tears! I couldn’t believe how much I really couldn’t hear until I put these Resound Linx Quattro hearing aids in my ears. One of the most amazing things that happened was Molly wanted me to shut my eyes and told my mum, dad and Jane to stand in different areas of the room and for me to point at them when I heard them say something and OMG I could hear them all and know where the sound was coming from and it made me flood into tears. I couldn’t believe that I could hear them with my eyes closed which meant that I wouldn’t have to rely on lip reading which was just a sigh of relief! On the 17th of September I felt the luckiest girl in the world! And that was all thanks to the Molly Watts Trust, GN Hearing And Correct Hearing for letting me have these AMAZING, BRILLIANT, AND EMOTIONAL new hearing aids!

I just want to show you all now what my old hearing aids look like to what my new hearing aids look like that I’m wearing now! So here’s a photo of my old hearing aids next to my new ones!

    

              

 

   So my old hearing aid is on the left and my new one is on the right. Can you see the see the difference? Haha! 

 

So let me now tell you some sounds that I’ve never heard before. The day after I got my new hearing aids I was constantly listening to new sounds around me and concentrated on hearing new things. The funny things that I’ve never heard before was tin foil! My mum was doing my lunch for school and I heard a loud sound and I was like mum was that? And she said what do you mean? So we listened out for it and it stopped and I was like its stopped I can’t hear it now and then she went back to wrapping my sandwiches and I said mum that’s the noise again and she said Olivia that’s Tin foil and I was like what really? And omg it made me feel very emotional because I’ve never heard Tin foil I couldn’t believe that a little sound that I’ve never heard before now existed! Another funny sound I heard for the first time was my dog eating her dinner! Me and my family were sat on the sofa watching tv and I was like what’s that noise? And my dad said Olivia, that’s Hettie (my dog) eating and honestly it was an annoying sound because she is sooo loud haha! But yeah hearing Tin foil and my dog eating was just unreal haha! I couldn’t believe the amount of sounds I didn’t hear before these new miracle hearing aids! When I got to school I was a little nervous because I was thinking omg is it going to be overwhelming hearing loads of children talking all at once during break and lunch but honestly it really wasn’t! I can hear all my friends really clearly in a busy and loud environment and it was just unreal because I used to never be able to hear everyone, I used to have to get them to repeat what they were saying. When I got to school I was talking to my friends and then another one of my friends came up to me and started talking to me but then I looked the other way to talk to someone else and then my friend said something and I looked straight at her and I knew what she was saying and my friend was like OMG those hearing aids really work! Normally I would have to shout at you or tap you for ages but you responded to me straight away and OMG that just changed my life! Like it made me feel like everyone else again! Like I was just as normal as everyone else! So every since then I’ve just felt a million dollars! This week has just been amazing and I just feel really really really lucky to be able to get these Resound Linx Quattro hearing aids!!  

 

Right that’s my story of the first week of having my new hearing aids done! However, I just want to say another huge massive thank you to the Molly Watts Trust, GN Hearing and Correct Hearing for changing my life and making me feel the luckiest girl in the world! I wouldn’t be where I am now without all these people who have given me the opportunity for letting me have these hearing aids! I also want to say a massive thank you to my friends, my family, my mum, my dad and my sister for being there through all the tough times and the good times and for all of you for just sticking with me no matter what! And finally I just want to say a massive thank you for all of you who are reading this blog! I wouldn’t be writing this blog if it wasn’t for all your amazing messages and feedback and I just really hope I have brought awareness out to everyone and for everyone to keep going and not give up when the times get hard because we’ve got this! Love you all Olivia xx 

 

 

 

 

 

 

 

Saturday, 31 October 2020 11:38

Olivia’s emotional journey to BETTER HEARING

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Olivia is our 3rd chosen Case Study.

At 15 years old she is also our youngest.

We at MWT met with Olivia in the summer of 2019, a very emotional meeting which very much reminded us why we do what we do.  Recently diagnosed Olivia had found Molly on social media and in her own words had found a positive role model with whom she could relate.  

Olivia remined us of a young Molly looking for somebody young that she could reach out to, that person was not there and the very reason the Molly Watt Trust was set up.

We are excited to have the support of GN Hearing and Sarah Vokes at Correct Hearing committed to assisting us seeing Olivia through this most demanding of times in her life.  Starting with GCSE's set to happen next summer (Covid allowing) and the ability to hear so much better than previously.  It will be excting to follow this journey through education and to see just how important access to sound is through education.

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Thursday, 21 May 2020 16:15

The Reality of Usher Syndrome

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Well folks today so far for me has been a real rollercoaster of emotions.

To be honest I’m usually very straight forward and generally a get up and go sort of person, however today it felt very different!  Firstly I got up later than normal 10am which is not like me, usually by this time I have done a daily 4 mile walk in the woods with my guide dog Frankie if we are not working.  Something I know is good for my all round wellbeing.

Noticing the time I jumped up and headed to the kitchen where Lyn my wife was, she was organising breakfast for me.  I certainly wasn’t myself as It had taken me a little while to realise I hadn’t put my LiNX Quattro hearing aids in. I noticed I was only picking up the odd word from Lyn as we tried to piece together a conversation.  I then realised that Alexa was playing something in the background, it was simply just a noise!  It was at this stage I realised two things, just how deaf I am and also how totally reliant I really am on my new hearing aids.  Having worn LiNX Quattro for over 6 months now I have gotten used to hearing music and recognising songs without any problem. 

Lyn then got up and walked away bit still talking to me, wearing my new hearing aids I usually hear every word but not today.  Something else I noticed was not only have I got used to the sound I access with my hearing aids but so too has my wife!  Today I had to asked her to repeat herself several times which she did, apologising that I couldn’t hear her!  I soon put my hearing aids in!

We have been busy spring cleaning throughout the lockdown and today we were clearing out the bedside drawers, I came across all my old spare hearing aids , changed batteries cleaned tubes etc , always good as a back up I thought!  I took out my LiNX Quattros and  popped them in my ears to remind myself of what I used to live with.  The sound was horrendous, crackly and as if I’ve got a bad cold and they felt massive!

I was told by my old audiologist that I had the best available equipment, I used to think I had the best equipment and they were good but in truth they don’t come anywhere close to what I have now! 

After cleaning out I went for lunch with my wife again at the kitchen table we talked . She knew something was really bothering me.   Alexa was playing, I asked Alexa for the volume, she told me volume 3, I could hear every word perfectly wearing my LiNX Quattro, so I asked Lyn what volume was on for me without hearing aids earlier in the day, she said you start to pick up on some sounds at around volume 6, so I put Alexa on Volume 6 and it was far too loud for me, actually uncomfortable for me wearing my LiNX Quattros. 

This hit me Square in the face as to just how bad my ushers syndrome type 3 is now and how it really is catching up on me.  For those who do not know, Usher Syndrome type 3 is the rarest type and it often means we are born with both hearing and sight and sadly can lose both.

I’m not embarrassed to say this but it’s the first time I’ve ever cried at the harsh reality of deaf-blindness. I feel so damned privileged to have these aids and generally good health. It’s left me thinking very deeply today as to why I’m in this position and how I can help others.

I have a voice I strongly believe I need to shout as loud as I can so that others not able to shout can also be heard.

The deafblind community need the best assistive technology available as standard we should not have to fight tooth and nail for things that truly enhance our lives. 

The better the quality the more enhanced and enabled our lives are and the more inclusive we can be.

There is no feeling like independence and the ability to live fulfilled lives.

I know I lose a bit more sight and hearing every year but I strive to be independent as long as I possibly can so I personally strive for the best equipment to help me along on my journey of deafblindness. 

Wednesday, 08 April 2020 14:48

Sometimes its the little things!

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Today I went for a long walk with my guide dog Frankie.   Frankie works hard but gets plenty of free time to balance this. 
Today we walked up to the woods passed the dams, I was very aware of the fact of avoiding chit chat, it is not always easy with a blonde Labrador but we went early when not too many people were about . The amazing thing was I could take my time and enjoy listening to the sleepy environment around me.  Often the sound of silence is magical after years and years of experiencing whistling and feedback from my old NHS hearing aids.

Today was a beautiful day, the sun was shining it was bliss hard to believe that with all that is happening around the world at the moment!

In the woods the birds were singing and boy there is plenty for them to sing about spring is upon us. Today I realised something I’ve never heard before and that is the sheer number of different bird calls there actually is . Music to my ears. I also found myself laughing as I heard Frankie paddling in the running water.

I really enjoyed my escapism today away from today's harsh reality but all thanks to Molly Watt Trust GN Hearing and the wonderful staff at The Hearing Clinic, Glasgow without a doubt LiNXQuattro have changed my life.

Thursday, 02 April 2020 17:53

Case Study 1 & 2 Interviews - Part 3

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Thursday, 02 April 2020 17:51

Case Studies 1 & 2 Interview - Part 3

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