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.
Having Usher Syndrome is a rollercoaster of emotions as your vision ebbs away.
Going blind is all consuming so much so we almost lose sight of the real importance of access to sound.
For me going blind took precedent!
I had retinitis pigmentosa and I had macular oedema. My consultant was so concerned about the macular oedema I was given drops, I was given tablets and ultimately I had a small procedure on one of my eyes. I was seen every 3 months for the first 4 years after my diagnosis. I had appointment after appointment, low vision clinic, VI Liaison Officer, this test, that test the list went on and on and it was absolutely exhausting.
To be honest I didn’t really understand it all back then, I had been used to appointments, audiology and speech therapy. Looking back my life had very much been about working with one adult or another on a one to one or in small groups because of my deafness.
However, as time progressed and I matured I began researching retinitis pigmentosa, macular oedema and Usher Syndrome - naturally I began to realise the severity of my condition and over the years I have felt a strange kind of grieving for my sight. I have been sad, I have cried, I have been angry, I have felt emotions I never knew existed, the result of which I found myself feeling very different, very isolated and on occasion very scared of the future.
Whilst we were all dealing with my progressive sight loss the one thing that enables me to be me is my deafness, as strange as it sounds my deafness had become the one thing that could, would and does enable me to live a pretty positive life, but only with assistive technology. There is some amazing assistive technology to enable deaf people.
I was born deaf, I never grieved for my loss of sound, I’d never had it to lose it! I had hearing aids from 18 months old, they could enhance and enabled me to access sound, thanks to those old analogue hearing aids I learnt to speak. It took a time but I was very well supported. The digital hearing aids I got then enabled me to really get going and along with a radio aid I did really well and was able to be as inclusive as I chose. There were difficulties but I had developed coping strategies because deafness and hearing aids were all I knew.
One of the first things I noticed just before my Usher Syndrome diagnosis was that I felt more deaf. I was really struggling to hear, what I hadn’t realised straight away was that my sight loss had denied me the ability to lipread, see facial expression and gestures, things that help enable deaf people to hear, yes, us deafies hear with our eyes. Lipreading is a huge part of understanding and enablement, up to 40% is heard with our eyes, I had lost that.
Looking back now losing the ability to hear with my eyes made my life so much more challenging. I don’t think people realise how tiring being deaf is, always having to concentrate on listening, having to use your sight to access information, its tough, however deafblind is beyond exhausting and sometimes totally overwhelming.
Having Usher Syndrome is truly challenging and painful for the people closest to us, often a feeling of helplessness because so far there is no cure, however there is some incredible assistive technology available. In my opinion we need access to it and we must embrace it to live as positive a life as possible.
Being deaf and going blind is gut wrenching but what many tend to do is concentrate so much more on the blind part of the condition when in actual fact and in my opinion we are missing out on the real importance of our ears.
Much more consideration should be given to our deafness and what hearing aids can do to enhance our lives.
For those following my story I have been fortunate to be wearing GN Hearing smart hearing aids for several years.
My Resound LiNXQuattro smart hearing aids have enabled me to literally fill in the gaps made from the loss of visual clues like lipreading, facial expression and gestures and more. These visual strategies are said to be 40% or more of how deaf people access sound!
Today I hear so efficiently that I no longer miss the visual clues. I can hear around doors, I can hear inside and outside, I have directional hearing, I hear tone and clarity. I have depth in my hearing, I am very fortunate.
Naturally my hearing aids have an app, Resound 3D, it enables me control over my hearing.
I can use my iPhone or applewatch to make adjustments: I can adjust volume settings, mute my hearing aids. Adjust speech focus, noise and wind noise levels. Adjust treble and base to suit. There is a tinnitus manager. There is a help locate lost or misplaced hearing aids. There is a remote audiology assist. The list goes on and on.
I can use my iPhone as a phone thanks to bluetooth connectivity and streaming, imagine life without access to a phone, I had that for 20 years!
Before smart hearing I would switch off my hearing aids whenever I could choosing silence to relax after a busy tiring day, today I relax listening to music, music I can hear, lyrics I can hear and I totally enjoy it, music is so therapeutic.
Without a doubt I’d love to be able to see again but its not happening anytime soon so I embrace as much enabling technology as I can to live a fulfilled life.
My smart hearing aids are the catalyst to my accessibility toolkit and should be made readily available to all hearing aid users living with Usher Syndrome.
Catching up with family and repacking for a trip up to the north of Scotland to visit family.
Anybody who has hearing aids knows it crucial to make sure you always , always, always carry a spare set of aids if possible, just in case! As I was packing I came across my old NHS pair of hearing aids, at the time (2019) I was assured they were the best on offer! They had served me ok in the past, they had to! I decided to check them out and change over new batteries. I decided to put them in to remind myself of the sounds I used to hear. The horrible sound of feedback, whistling and a rustle through the moulds. I started talking to Lyn my wife and realised just how different my voice sounded to myself. It sounded like I had a cold and was very dull. I found it difficult to wear them and quickly changed back to the clarity of my LiNX Quattro, there really is no going back, there really is no comparrison. I remember Molly saying there is no way she could go back to her old hearing aids, now I know exactly why. It’s only been a few months with my new smart hearing aids but today was a sharp reminder as to just how good the GN Hearing smart hearing aid technology really is. To deafblind people like myself having access to clarity of sound is essential.
Many thanks again to Molly of the Molly Watt trust and her dedicated family also to gn resound . Let’s get everybody on these. They do change lives.