I have had some additional personal challenges recently with the reality that my first trusty and gorgeous guide dog Unis is retiring early and that I will continue my journey with the beautiful young Isabella.
Isabella will never replace Unis, just take me on as her big challenge!
It is hard to describe the mixed emotions this new scenario has put on me. Other guide dog owner friends who've shared so much with their four legged friend will understand the pain and I am so grateful of the support from the many friends I have as a result of having Usher Syndrome and a guide dog, you know who you are and I so appreciate your recent support.
I had to switch off and be on my own to untangle myself from what I can only describe as a kind of grieving for Unis, feeling so grateful to her for being at my side through thick and thin and the elation that Isabella will give me back the independence I have struggled with over the past year as Uni's anxiety worsened hence her early retirement.
I needed that time on my own to think and get my head around things. What this has often meant to me is taking out my hearing aids and having silence, a sweet and peaceful silence that many deaf people enjoy and will identify with. To literally switch off, to take time to think without interruption, however, strangely this time I didn't want that silence, I wanted music!
It dawned on me then that I am hearing music, and particularly lyrics better than ever before.
Streaming music directly from iPhone to ReSound LiNX3D is absolutely amazing. Music can change and make moods. It makes me happy or sad, it can make me cry, it can motivate, it can be uplifting and often all emotions in one song it dawned on me music was exactly the tonic I needed, not silence.
Music has been my saviour over this rough patch. I have always enjoyed music but have never listened to the lyrics like I do now. I can hear through the music to the words, previously it was sounds, rhythms and often vibrations, it didn't bother me as I simply enjoyed music, I just didn't realise how powerful words can be.
I actually lost myself in lyrics thinking about Unis and Isabella and moving forward with my life and it has definitely helped me with the transition I'm facing.
Music is of the moment, songs I enjoyed in the past but hadn't really listened to the lyrics or made up my own became meaningful of my situation and strangely the various songs I listened to could be taken as happy or sad, needless to say I cried and laughed my way through quite a few playlists.
I can't say I like one genre of music, I like so many different things.
Music reminds me of certain people, of times and places, of happy and sad times.
I looked over my playlists and relived back to when I spent time with my grandparents when I was little, back then I had analogue and early digital hearing aids. I sang to my favourite tunes not even realising I was making up the words, I sang how I heard the words. Not any more, I hear the lyrics clearly and I sing - apparently my singing hasn't improved, however, I'm singing the correct words.
Some of the amazing holidays and working trips I've enjoyed, the things I could see back then but now I'm reliving things based on what I'm hearing.
I could name lots of songs with lyrics I find particularly powerful and healing but will just name a couple. The first ironically is music first heard at my grandparents house and back then the words had no relevance to me but now mean so much, ‘Something inside so strong’ by Labi Siffre https://youtu.be/PcKoYGNj0BU and the second with real meaning and a song my Mum often plays in her car, Lean on Me’ by Bill Withers https://youtu.be/N5jlPL1tNDY this music is not music I hear anywhere else but with family and I guess for that reason it fills me with warmth.
My hearing using ReSound LiNX3D sets a scene my eyes no longer provide, I have no idea how I would be coping today without this unbelievable technology it has truly enhanced my life, given me confidence and connected me to new things.
Being able to hear so clearly is priceless.
My blindness often means I'm relying on my hearing to see things, to locate things and now to relive things. Directional sound and spatial awareness together with crystal clear hearing and exceptional connectivity has enabled me to compensate where my sight fails and to be as inclusive as is possible living with deafblindness.
If you can imagine your eyes closed or in complete darkness you will appreciate the importance of hearing for somebody living with Usher Syndrome (deafblindness) it isn't easy, however I have accepted where I am at, there is no doubt I grieve for perfect sight at difficult times but nowhere near as much as I used to.
I was blessed to have had my beautiful black beauty Unis and now the beautiful black cutie Isabella who will continue the great work I enjoyed from Unis.
This emotional journey has been lived through based on sound and hearing and again I feel lucky to have the ReSound LiNX3D smart hearing aid technology to help me find my way.
For the last two years I have raved about ReSound LiNX² smart hearing aids and rightly so, they literally changed my life.
I would be lying if I didn't say "REALLY" when I initially read about ReSound LiNX3D, however, I absolutely wanted to try them.
Anybody familiar with hearing aids knows that whilst a new pair can offer more long term the initial few weeks/months are not fun.
It is key that people understand that a new pair of hearing aids are not an instant fix. With every new pair of hearing aids - unlike the cochlea implant there is not a ‘switch on’ and you hear new sounds process. Most with hearing aids have experienced sound before, unlike many profoundly deaf and hence the differences in "siwitch on/adjustment." With hearing aids the brain and nerves literally work hard to process new sounds and it is both mentally and physically exhausting. I often have to explain to people the reason I am not hearing as well as before (with previous hearing aids) in the first few weeks is because my brain is in a state of confusion to sounds, kind of re-programming itself all over again.
As someone with such restricted vision and somebody who has benfitted enormously from LiNX² I did feel really quite anxious about trying ReSound LiNX3D, probably more anxious than previously however I absolutely wanted my chance to experience the very latest smart hearing aid technology.
I knew I would have to deal with some very challenging weeks whilst adjusting to the new hearing aids and that the confusion they often cause makes me feel more deaf than normal however the benefits do far outweigh this once the brain adjusts. A time to be very patient.
Picking up new and unfamiliar sounds are initially confusing and often hard to make sense of whilst the familiar sounds no longer sound familiar. The brain seems confused and in a state of learning and it can be very tiring, frustrating and annoying all at once on top of which it can be hard to have patience throughout this period of time.
Even before being fitted with LiNX² I remember feeling hope that these new smart hearing aids could make a real difference to my life. I desperately wanted them to work, to give me something more then my NHS hearing aids. Could something really be available in any way shape or form to really enhance my hearing and in any way compensate for my failing sight?
I remember the early days of LiNX² the whole "getting used to" process. Almost bizarrely I could immediately sense a new clarity in sounds that I found strange but exciting.
Amongst the confusion of the many new sounds I was experiencing for the first time in my life there were sounds that initially sounded like interference in my ear, a process of elimination by the three audiologist present revealed I was hearing sounds from outside of the room I was sitting in! I had never experienced that before, hadn't as much as considered it an option, yes, up until I was almost 21 years old I had not thought this was even possible - how much had I really missed out on over the years?
Also although the sounds were kind of coming at me at all angles I could for the first time follow a sound around the room. It made me feel quite dizzy but also fascinated.
The first month was a journey of emotion and discovery. Slowly I discovered so many new things, the voices of my loved ones sounded so different, so much clearer. The LiNX² connectivity to my iPhone and applewatch, the app enabled me to experiment with my hearing, adjusting bass and treble and also adjusting the smart aid capabilities in different environments it really was unbelievable. As a result of me being able to adjust my hearing aids as appropriate to my environment I discovered how much better my access to sound really was. I discovered 'hearsay and earwigging'. I sat on a train hearing the noise of the train but over and above that sound I could hear people speaking clearly even though I couldn't see them, I knew they were sitting behind me. It was both fascinating and strange in those early days.
I could now speak and hear clearly on my iPhone as sound streamed directly to my ears, I could hear things I had never heard before.
Those difficult, exhausting days of constantly scanning to find sound gone I felt connected to people even though I couldn't necessarily see them. Ask any deaf person how important sight is to their very being and you'll understand just how huge these things are.
I could write so much about these amazing smart hearing aids however I have written extensively about my LiNX² already and most blogs can be found at www.molly-watt-trust.org this one is my personal favourite: http://www.molly-watt-trust.org/component/k2/bali-sound-sensations
So, in April of this year I was humbled and flattered to be one of the first in the UK to trial the very latest in ReSound's smart hearing aid technology, ReSound LiNX3D, Whilst I was excited I was also apprehensive as to what more these hearing aids could offer, which shows just how happy I have been with my LiNX².
Whilst waiting on my fitting I had time to do my own research and the more I researched the more exciting ReSound LiNX3D became, however, I was not looking forward to that first month of aural confusion especially as my work agenda is now quite taxing. There would be no quiet time to aclimatise myself to new hearing aids this time!
Since wearing LiNX² my confidence and ability to work independently has led me to, with a little help, set up my own business as well as work tirelessly for my charity and championing accessibility and inclusivity for all.
My Dad took me for my first fitting of ReSound LiNX3D. Being deafblind mobility is another of the extra challenges I have to deal with. I was excited and curious to experience the many things I had read - could they really be as superior to LiNX² as I had read?
I was being fitted by a friendly familiar face at ReSound so I felt very comfortable.
The fitting did not pan out the way I thought it would. The first thing we established from an up to date hearing test was that my hearing had worsened, not a lot but every single decibel of loss can be multiplied over and over for somebody deafblind. I put on a brave face on the day but deep down I felt myself grieving for that loss. My ability to hear is what keeps me inclusive in a world that is more often dark than light these days.
I was hoping for so much from ReSound LiNX3D after my experience of ReSound LiNX² and after that bad news I was desperate for them to offer more to compensate for the added hearing loss.
The fitting went well and I could immediately hear differences and as exciting as it was I felt a touch deflated, such mixed emotions.
I had an emotional couple of days coming to terms with the fact my hearing loss had deteriorated however after allowing myself time and with the support of my family and friends I soon pulled myself together and started to enjoy experimenting with my ReSound LiNX3D. My life is full of challenge, this is just another one and totally doable.
Almost immediately I began experiencing new sounds and they seemed louder than the old sounds, it felt like my brain was working overtime to make sense of them, it really was hard work but the belief that once everything settled I would experience more positives than negatives even with more of a hearing loss gave me hope.
Never one to stay down for too long I immersed myself into work wearing ReSound LiNX3D.
ReSound LiNX3D come with a new app, the new app offers much more than the one for LiNX² so more to learn, more to experiment with, exciting.
This app, like with LiNX² smart hearing aids bluetooth connect automatically once paired to both iPhone and applewatch. Like the now previous app my most frequently used programmes were there: ‘All around,’ ‘Restaurant’ and ‘Outdoor’I found the familiarity comforting. Knowing the three programmes I use most are on the new app for me to use and alter accordingly to enable me to hear to the best of my ability. The new app has bass, treble, volume settings and newly added, further wind reduction settings on each programme, an inbetween bass and treble, a ‘Middle,’ setting that almost balances out both bass and treble when in an environment with poor acoustics.
The format of these settings has changed slightly and is now in graph form - using your finger tips you can fiddle around with ease to find the settings that suit you best. However, the icing on the cake really has to be the ‘Request Assistance’ option.
What does this mean?
I can now simply, request assistance using the app on my iPhone wherever I am. The benefits of this are enormous. Besides the fact I have the assistance of my audiologist pretty much at my fingertips any time and any place I may be. I no longer have to make an appointment to see an audiologist which can be several weeks away and for me at a clinic very hard to reach by public transport.
For deafblind people like myself mobility is challenging at the best of times but the thought of having to attend an audiology clinic with broken hearing aids some weeks later is not acceptable but something those with dual sensory impairment have to endure on occasion.
The reassurance I now have from "Request Assistance" via the app on my iPhone is truly priceless. Now if I am away working, which is often the case and for any reason I have any issue or concern with my hearing aids I can fill in a short but thorough questionnaire to set out my concerns (ie: which programme, which setting, which ear, how annoying etc etc) I can also fill in a personal message to specify my issues and this is sent direct to my audiologist who will pick it up and respond as soon as possible.
My first two and a half weeks with LiNX3D were for me more challenging than my first experiences of LiNX² I think besides the usual "getting accustomed to" period I was very busy with work so challenged in varying environments and wasn't used to hearing aids or the app as a result I did struggle more so contacted my audiologist who insisted he check my hearing aid settings.
A short follow up visit to my office and a check of my previous programme for LiNX² with a comparison of my new programme with LiNX3D resulted in a small tweak which appeared to literally be a few taps on a computer then almost by magic my hearing aids came to life.
Sat in the office concentrating hard on my audiologist all of a sudden became less intense as I could hear him without any problem. I also became very aware of the clicking of a computer keyboard behind me and I could hear the familiar sound of the printer printing to my left and also the gurgling sound of the water cooler beside me - this is more like it I thought.
I remember having a similar check with my LiNX² 3/4 weeks on and a few little changes making a big difference so perhaps normal to need that follow up.
I think changing to ReSound LiNX3D from LiNX² I felt more educated as to what could be achieved and so more aware of any problem, either way, I was sorted.
I left the office that day with guide dog Unis, I could not just feel her body close to me but I could hear the clinking of her lead and collar and her paws on the pavement beside me, I could also hear birds twittering on the roofs above me, I could hear the sounds of cars to my right and behind me. As I walked through the town I could hear voices, different voices, men, women and children. As I passed the coffee shop I could hear people talking and the sound of crockery, I couldn't see any of it as I walked looking straight ahead allowing Unis to do her job. It was amazing to be able to understand my familiar environment because of my hearing. The depth, quality and clarity of sound LiNX3D provide is incredible. As I passed the bakery I could smell fresh bread and to the side of the bakery is a bus stop, I could hear voices, clearly people waiting for a late bus. My walk home from the office was as though I was seeing new pictures in sound. Sounds coming from all around me and the beauty really was I could decipher the sounds and where they were coming from - my new journey of discovery had begun.
Some other positives are the clarity of speech streamed via iPhone and also music has much more depth than previously. I'm enjoying hearing music, lyrics and new sounds, I've discovered the sounds of different instruments that I'd never heard before, now just to educate myself on exactly what those instruments are!
I have since experimented with ‘request assistance,’ because of course if you have an issue - you send the message what happens next?
Well after sending a request a week or so after I had seen the audiologist with a minor concern, I received a response.
Here is the absolute "creme de la creme" my audiologist sends back an up to date programme for me to install. Clear instructions display on my screen: ‘Take out hearing aids, leave them on and leave near phone,’ and the programme re-installs onto the hearing aids with the necessary adjustments made by my audiologist externally. I could be in America or Australia in fact any country with wifi and have both assistance and solutions made via my iPhone. This service is second to known and truly priceless.
It is possible to restart programmes and request further assistance if necessary.
There are two relatively small negatives for me at this point, both of which could be perfected. Firstly the writing within the app is hard for me to access at times, lots of white backgrounds and fine print - this is very challenging with tired visually impaired eyes, would love to see an improvement here, good contrasts and dynamic text would be perfect.
Also it would be great to receive an instant response from the audiologist to confirm my request for assistance had been received rather than me keep checking the app which did get very tiring. Besides that, I have been totally impressed.
I have now been wearing ReSound LiNX3D for around 5 weeks and I feel the initial "brain strain" and confusion is over and I'm now enjoying the benefits of this incredible smart hearing aid technology.
I am able to use the app on both iPhone and applewatch to adjust my ability to hear in every different environment I might find myself in.
I loved my LiNX², they offered me more than I could ever have believed possible however I can now report ReSound LiNX3D have exceeded my expectations and not just because of the ground breaking "Request Assistance" but because this smart hearing aid is providing much improved clarity of speech, crystal clear in fact, also improved connectivity provides excellent access to all number of iPhone apps audibly. My days of not hearing or mishearing are very much a thing of the past.
I was diagnosed with Usher Syndrome almost 11 years ago - born severely deaf I have now been registered blind 9 years and whilst like everybody with this cruel condition I hope for a cure however, I am not hung up on finding a cure, I want to live my life positively and thanks to ReSound this is possible.
I am excited for the future because this incredible assistive technology keeps evolving and enables me to be an inclusive part of society. I simply want this for all living with the challenges of deafblindness.