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.
The Molly Watt Trust with the support of GN Hearing and Hearing Clinic Glasgow was delighted to have arranged the fitting of Colin’s ReSound LiNX Quattro smart hearing aids in advance of his Wedding Day. A little time for adjustment ready for one of the most special days of his life.
November 1st, 2019 was without a doubt one of the biggest days of my life as Lyn and I finally got married.
The one big thing I was always concerned about was that this was going to be a big and social event, min and Lyn’s big event, an environment I would very much struggle with in in the past. Anybody living with Usher Syndrome will tell you being deaf and blind in this space is often so challenging many of us would choose to avoid some social rather than struggle to communicate and see so little you simply cannot enjoy it - self isolation.
I had felt a level of anxiety on the run up to the wedding but both Lyn (who is blind) and I took a great deal of time arranging things to be as ‘Usher/deafblind’ friendly as it could be.
We had organised our wedding to be as inclusive as possible, having control meant we could control things really important to Lyn and I. Often just little things but things that make a huge difference. I was able to control the lighting, I could even dim the disco lighting. We had appropriate lights throughout the venue so Lyn and I with our small amount of sight between us could make the very most of our day and that our guests would also be comfortable. We made sure there was provision for our guide dogs and for our guest’s guide dogs.
I wanted to see my beautiful bride and our guests, just like any other bride and groom we wanted to cherish every moment.
My other really big concern was my hearing, I had been really struggling with my standard NHS hearing aids. I was very anxious I would not hear my marital vows and possibly make a fool of myself. When you cannot see much and your hearing is terrible being on the spot isn’t somewhere you’d not specifically want to be so when the Molly Watt Trust approached me and discussed their project I jumped at being a part of it. The offer came at the perfect time - I was excited. I had heard so much about GN Hearing and their smart hearing aid range and couldn’t wait to be fitted.
Well I was elated, not only did I hear my wedding vows clearly I heard so much more.
When it came to the speeches I was able to hear all of them clearly in a large room full of friends and family, I could hear where the voices were coming from and exactly who they were. After the speeches when we sat down to eat, even above the sound of guests chatting, plats and knives and forks clattering I could still hear certain voices and accents around the room. This sort of thing I’m still marvelling over, just amazing.
When the music came on I could hear it clearly, with the appropriate lighting I could dance and feel safe and I could also hear Lyn speaking to me through the music.
For the first time in years I could genuinely enjoy a sociable environment and feel completely included in conversation.
I was able to mingle with our guests and even though I couldn’t see them I could hear them, something previously I could only have dreamed of.
As I look back on our big day I feel so emotional that it really was the day Lyn and I had dreamed of and that it was complimented and completed by a pair of ReSound LiNX Quattro smart hearing aids. Life changing.
I’m on the train home after a long day 3 trains and a 3 hour journey . I was just about first on so I placed my rucksack on the seat with my harness over it and put Frankie on the floor under the seat . I then thought I heard a gent mutter something under his breath so I tuned my aids in on the outdoor setting and sure enough he was. If he had only had the decency to ask I would have gladly given up my seat for him or his wife. There was no need to call me under his breath. I was dying to say something but sometimes somethings are better not said. I guess I got the last laugh.
Today I’m feeling a bit washed out it’s been an exciting emotional but most of all a life changing week.
I decided to chill out and take the dogs up the big hill. It’s about 4 miles through the woods and dams with stunning views. Today I found myself taking a lot longer than normal as it suddenly hit me that I could hear pitch perfect silence at the bottom of the hill, there was no muffled white noise or whistling, something that had become the norm with my standard NHS hearing aids, not even the constant irritation of wind whistling through my ears. In that moment I realised just how difficult hearing had become with all those unwanted sounds. That clear silence literally was golden. As I walked on I could hear aeroplanes approaching the flight path into Glasgow airport some 5 miles away . The clarity that I could hear aeroplanes before I could possibly see then, I was blown away.
As I began walking again I quickly realised I had a better connection with the dogs too, I could hear them even though I couldn’t see them as they enjoyed their free run.
As I was walking I noticed I could also hear my heavy feet trudging in the mud, this brought a smile to my face . I continued to walk poking my cane step by step grinning. I took my finger off the pulse, a lapse in concentration as I engulfed myself in the joy of the sounds of the woods , it went from light to dark in the woods not a great thing with Usher Syndrome/Rp (Night blindness). I found myself With 2 dogs running around and as I stepped forward in the dark I ended up knee deep in water in a ditch! I didn’t even attempt to scramble out but took the time to listen to the sounds of the water running past my boots. It sounds stupid but it what such a joy.
As we approached the bottom of the hill in the dark silence I suddenly heard a lone bird singing. I stood still for about 5 minutes listening to it’s glorious chorus, I had never heard any of these sounds!
Boy what a day you really don’t realise what you’re missing.
Thank you so much to the Molly Watt Trust and GN Hearing.
Having Usher Syndrome (deafblind) is beyond challenging. As I write there is nothing to enhance my sight, though I do have my guidedog Frankie and also a cane to help me get around. As my sight loss deteriorated I had to rely more and more on hearing with hearing aids. As most living with Usher Syndrome will confirm, losing sight makes you feel more blind as we can no longer use the usual visual strategies to obtain information. Hearing aids become so much more important. Before I was registered blind and wore hearing aids I might hear a noise and be able to look around to find the source of the sound, however when you can only see through a straw hole and then only in good lighting conditions looking around to find sound is not an option in fact it is incredibly dangerous. For instance with my old hearing aids I might hear a muffled siren sound, a sound of danger but I wouldn’t know where it was coming from and I could be in serious danger or worse I could use serious danger. The NHS hearing aids I had been wearing did not give me the confidence I’m all of a sudden experiencing. If technology can be so enabling I’d suggest everybody with Usher Syndrome should have them!
So here I am a couple of days since being fitted with my GN Hearing LiNX Quattro smart hearing aids and I’m still very much overjoyed by these amazing aids. Today I noticed a few things quite different as I walked with my guidedog in harness. I was so much more aware of traffic noise especially from behind me. As a deafblind guide dog owner this is incredibly reassuring. Later I was working in my shed, Lyn, my wife to be, shouted only once to let me know my lunch was ready. As I popped my head round the door I scanned around to notice her putting her shoes on to come get me, like she usually would, knowing I wouldn’t have heard her. I cannot tell you how surprised she was as she usually has to come get me!
Another thing was today, I was fiddling with the TV and hearing aid app settings and have gone from volume 24 on TV to volume 8 to 10 and can hear every word. In fact I’m currently sitting in the kitchen writing this and can hear every word from the tv in the living room, all so new for me. There a couple of things I think I will need to adjust to my taste and probably re-adjust again as I get used to this new clarity in hearing and appreciating sound. I’m going to try a different size ear dome in my left ear as it doesn’t feel right, however the dome in my right is as perfect as it can be . Domes do feel different as for the first time s a hearing aid user most of my ear is not covered, will take a bit of getting used to. Molly says to persist, it took her a little while. The second thing is I will need to consider is something that enables me handsfree use of my iPhone as I feel I need this when working guide dog Frankie who is fairly newly qualified so I do need both hands for maximum control at the moment.
After some research I’ve found GN Hearing do a multi mic and also a clip which could be the answer. I cannot tell you how much I am loving these smart hearing aids. I have followed Molly Watt’s journey with ReSound LiNX hearing aids over the past years and seen how they have transformed her life but until getting my own I could never have imagined just how life changing they are.
I am so grateful to Molly Watt Trust and their supporters GN Hearing and Hearing Clinic Glasgow.