Hello everyone, hope you are all doing okay during these unusual times. Some of you may know me and some not, so let me introduce myself.
My name is Olivia Morton, and I am 15 years old and I’m living with this rare genetic disease called Usher Syndrome. I was diagnosed with Usher Syndrome at 13 and let's just say it’s been a rollercoaster of emotions, many highs and many lows but the best way to deal with this type of thing is to just take every day as you can! And most importantly NEVER GIVE UP! So, there’s a little introduction about myself and now let’s get onto why I am writing this post.
I have been on an incredible journey with the Molly Watt Trust, and I feel so privileged to have met Molly and her mum, as a result of which I was chosen to be a part of an exciting project resulting in me being referred to Correct Hearing, audiologists based in Nottingham where I met a lovely audiologist called Sarah Vokes who assessed me and then fitted me with the most amazing hearing aids called Resound Linx Quattro. They are soooo good, they’ve helped me loads over the last few months especially with school and home schooling. As you may have notice from the title of this post, I am going to talk to you about how my hearing aids are helping me with school/home school learning. I am in Year 11 of school and that is the last year of proper school, so I am feeling all the emotions at the minute! Especially since it is my last year and instead of actually being at school, I'm doing school at home due to Covid. Having to do online lessons through teams, brought me additional anxieties, I was very nervous that I wouldn’t be able to hear the teachers as much due to using my iPad and phone. However, thanks to my new Resound Linx Quattro’s, homeschooling has been amazing, I can hear the teachers really well during zoom meetings. I know straight away what the teachers want me to do. I can connect my new hearing aids to my phone or any other device through Bluetooth which is one of my favourite things, direct streaming! I’M SOOOO THANKFUL FOR THIS! All teachers and student’s voices stream straight into my ears and it feels like I'm back into the classrooms which is just incredible. Even if I don’t use Bluetooth, I can turn my hearing aids up and down using my Resound app on my phone, this is a massive help because if I feel like the teachers are talking quietly or loudly, I can turn my hearing aids up and down without any hassle. Thanks to these hearing aids, I have been able to learn at home effectively without any disadvantages.
When I got my hearing aids, I also had the privileged of getting a radio mic which is what I get the teachers to wear when I’m at school, so I can hear them more than the students in the classroom and its terrific! In around December time in 2020, I had to do all my mocks and one of the subjects I choose was Spanish; I had to do a listening exam and at the time I was thinking OMG I'm going to fail because I do struggle with listening tasks especially when they’re in Spanish. However, thanks to my radio mic, the teacher was allowed to wear it and they spoke it out to me through the radio mic and I could hear everything the teacher said straight away. This was just amazing, and I couldn’t believe how much this radio mic helped! I am very grateful that I received both the hearing aids and the radio mic because it has made my life so much easier at school and during home school learning.
I was also grateful to be awarded student of the month for November last year, which proves my determination in lockdown to keep my studies high.
There we go, that’s my post about how my Resound Quattro hearing aids have helped me during my school hours.
I just want to say a massive thank you to the Molly Watt Watt Trust to GN Hearing and to Sarah at Correct Hearing.
Hi folks I hope you are all well and keeping your spirits up.
I thought I’d write an update on my experience wearing Linx Quattro hearing aids from Gn Resound for just over a year. Donated by the Molly Watt Trust in collaboration with GN Hearing and The Hearing Clinic, Glasgow.
I was the first person to be asked to take part in a very important and necessary project to acknowledge the real hearing aid need, over and above deafness alone for those living with deafblindness. I have Usher Syndrome type 3 which is incredibly challenging.
I am now living with a severe to profound hearing loss and around just 3 degrees of central vision, no peripheral vision and total night blindness.
Usher Type 3 is different from both Type 1 and Type 2 and the rarest, it really hits home later in life.
I went through my teenage years ok but noticed something with my vision was wrong at around 21 years old. I’m sure you’ll appreciate I only see through my eyes and presumed nobody sees in the dark, I didn’t have any idea I couldn’t see because I had a condition causing night blindness!
My deafness came later.
I remember at about 28 years old I applied for a very good job at a nuclear plant working in the turbine hall . There was over 800 applicants and I was told the job was mine, however, after a medical I was told I had failed due to my hearing loss. You could’ve knocked me down with a feather!
So back to reality it was one of the many kicks in the teeth that people with Usher often deal with!
I progressed with life, had to work really hard even set up a couple of businesses along the way but at the age of 45 I reluctantly had to admit defeat. By now my eye sight so bad I couldn’t even find my way to the bus stop on a winters night!
I applied for a guide dog and got the result to my genetic testing which took a while but came back that I have Usher Syndrome Type 3, I was at this time told I needed a hearing check up! My hearing quickly went down hill from mild to moderate to severe now I’m tipping severe to profound.
To date there is nothing that can enhance my blindness accept to use assistive technology where I can, however options for the deaf or blind don’t always fit for deafblind people, all too often we have to muddle through either as a blind person person with deafness of a deaf person living blindness rather than seeing the bigger picture!
I’ve found in my experience I need to continuously adjust and try to stay ahead of the curve just to live my life. I’ve gone from cane to guide dog to specialised wrap around glasses to multiple hearing aid types.
So why is the very best available access to sound so important to somebody deafblind like myself?
Enablement to access sound, not just to hear but to hear so well you can rely on your hearing to keep you safe and inclusive.
Struggling to get by isn’t ok when there is tech to make life so much more doable.
I feel very privileged to be the first person chosen as part of an important and, excuse the pun ‘eye opening’ project being run by the Molly Watt Trust with the support of GN Hearing and in my case The Hearing Clinic, Glasgow.
The project is to demonstrate the additional challenges of people deafblind over and above deaf or blind and the absolute need for us to access the very best in hearing aid technology.
Molly Watt Trust collaborated with GN Hearing and Chris Stone at The Hearing Clinic to enable me to be fitted with Resound LinxQuattro smart hearing aids.
The day I was fitted with my hearing aids I learnt more about my hearing than I had ever learnt in my years of wearing hearing aids and to say I was blown away by my initial experiences of sound really is an understatement and here I an a year on and life has never sounded or been better even through this awful pandemic.
I have blogged about my experiences but been quiet as little happening with the many lockdowns that have been in place however what I have done is take the time to reflect on what smart hearing gives me.
I can now hear traffic when I’m out with my guide dog, I hear 360 degrees around me which when you consider I only have 3 degrees of central vision. To say my hearing compensates for my blindness, I think the numbers say it all!
I feel safe, my confidence and ability to get around hugely enhanced.
Throughout lockdown I’ve been out every day rain hail or shine on many walks, fully appreciating the noises of nature, the different birds singing. It’s also the simple things too like listening to songs or being able to hear a mobile phone conversation.
I am one of many people who really need the very best in smart hearing aid technology which is why they need to be made available to the deafblind community.
Unfortunately at this time Resound Linx Quattro are not available on the NHS which is madness when considering the positives they bring to my relatively small community
Yes they appear expensive initially however when you look further ahead - enablement to get out and about without fear of danger, when you’re able to work, access telephone calls, be inclusive, live your life and not feel the isolation often attached to Usher Syndrome and all the problems attached to it of which mental health is often a big part. When you consider these things are these hearing aids really so expensive? I think they would save huge amounts in financial support for many. Financial independence is beneficial to all.
Over the years I have spoken with numerous audiologists who see best available hearing aid tech as the best option for me as they will enhance my hearing for as long as is possible, and in doing so compensate a little for my blindness until the possibility that I may require cochlear implants, something I hope doesn’t become necessary, however should it become my only option the NHS would fund this at a cost exceeding £50k plus and yet won’t provide top quality hearing aids at a fraction of the cost - WHY?
Please help us on our quest if we don’t shout out we will not be heard!
If you want to help or make a donation so someone else could get the amazing benefit of these wonderful hearing aids which do change life’s take it from me as I know, then please contact www.molly-watt-trust.org .
Together we will change life’s for the better.
For now I’m thankful to the Molly Watt Trust, GN Hearing and The Hearing Clinic and hopeful Molly Watt Trust can continue to work with GN Hearing and help others like myself.
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
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.
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.