A A A Accessibility A A A A
Saturday, 31 October 2020 11:38

Olivia’s emotional journey to BETTER HEARING

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.

Thursday, 28 November 2019 18:23

Readiness for the ‘Big Day’ 

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.

Colin:

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.

Thank you so much to Molly Watt Trust, ReSound GN Hearing and Hearing Clinic Glasgow.

Saturday, 26 October 2019 11:28

Sometimes ignorance is bliss!

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. 

Sunday, 20 October 2019 11:27

A little time to reflect

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

 

Recent Blogs

Lots of Joy with my Resound Linx Qua…

Lots of Joy with my Resound Linx Quattro & Multi Mic in school /education

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...

Read more...

My 1st year with Resound Linx Quattr…

My 1st year with Resound Linx Quattro - WOW!

    I was chosen as part of a project run by Molly Watt Trust with the support and collaboration of GN Hearing and Sarah Vokes of Correct hearing in Nottingham.  In February...

Read more...

The Importance of Best Access to Sou…

The Importance of Best Access to Sound for those living with Usher Syndrome

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...

Read more...

The Colour Palette of Hearing - Reso…

The Colour Palette of Hearing - Resound One

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...

Read more...

Covid Challenges and Solutions #Doin…

Covid Challenges and Solutions #DoingItAnyway

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...

Read more...

The Reality of Usher Syndrome

The Reality of Usher Syndrome

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...

Read more...

Smart Hearing the Catalyst to my Acc…

Smart Hearing the Catalyst to my Accessibility Toolkit

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...

Read more...

A Decade of Progress

A Decade of Progress

Well it’s the year of 2020 everyone!  It certainly has been a time of reflection for me, as a result I wanted to share my last decade in a blog that...

Read more...

Ultimately we can all be winners

Ultimately we can all be winners

This year saw me nominated for three awards, Young Digital Leader for Digital Leaders for the second time (Too old for that one again) Positive Role Model for Disability, National...

Read more...

Virgin Train #Fail

We were truly horrified to hear of Molly's recent expereince at London's Euston Station and it must never happen again:   I travelled from Maidenhead to London Euston to catch a train...

Read more...

Helen diagnosis 'I felt my world fel…

Helen diagnosis 'I felt my world fell apart'

My name is Helen Colson. I’m 29 years old & live in Southport, Merseyside. I was diagnosed with Retinitis Pigmentosa and as I am moderate-severely deaf, Ushers Syndrome last year.  It...

Read more...

Olivia's Usher Life - Last few month…

Olivia's Usher Life - Last few months of emotions

Hello Everyone! Would like to wish you all happy deaf blindness week! I’m so sorry that I haven’t posted in it feels like ages! But I’ve got soooo much to...

Read more...

Where did our journey with Usher Syn…

Where did our journey with Usher Syndrome begin?

Where does our story begin..... Alice (now 16) was born profoundly deaf. In Oct 17 at a routine eye test (Alice has always worn glasses) they picked up an issue...

Read more...

The evolution changing Usher Syndrom…

The evolution changing Usher Syndrome

Usher Syndrome is a strange thing, strangely it is evolving even though it hasn’t changed.  It remains a condition without a cure. There are variations in level of deafness, in level of...

Read more...

Whispers in the Dark

Whispers in the Dark

It’s never been easy. Having to scan the floor in front of you when walking down the street. Having to pre-plan the route to the nearest toilet in a restaurant...

Read more...

GAAD - Not if but how!

GAAD - Not if but how!

Indeed back in the 19th Century it was Helen Keller who stated “DEAFNESS SEPERATES US FROM PEOPLE AND BLINDNESS SEPERATES US FROM THINGS”. Back then she was right, she lived...

Read more...

Equal access to sound for all

Equal access to sound for all

Today is ‘Rare Disease Day -2019’ So I decided on a blog about hearing aid technology that can and does enhance lives.  This http://www.nciua.org.uk/latest-new/ was brought to my attention several weeks ago. ...

Read more...

LiNXQuattro 'LiNX to Everything…

LiNXQuattro 'LiNX to Everything"

I have to admit that as time goes by, wearing high tech smart hearing aids has become just a part of me.  I imagine this must be how natural hearing...

Read more...

#GAAD 2018 - Exclusion to Inclusion

#GAAD 2018 - Exclusion to Inclusion

I wanted to write something for GAAD (Global Accessibility Awareness Day) this year to take into account a lot of the work I have been doing over the last 3...

Read more...

Applewatch is lots of useful things …

Applewatch is lots of useful things but also bossy!

When I peer into the mirror I see my right hazel/green eye.  Traveling downwards and towards the left I can see my nose then my mouth.  Following the nose upwards...

Read more...

Happy Haptics

Happy Haptics

How is it that a few simple vibrations can give you SO VERY MUCH?If you had asked me the same question just a few months ago I would have probably...

Read more...

Counselling - My Rollercoaster of Em…

Counselling - My Rollercoaster of Emotion

I haven’t blogged for a while, but feel this heartfelt blog needs to be written. I had never really considered the sadness, even grieving that happens when somebody you have loved...

Read more...

Applewatch Down Under

Applewatch Down Under

Coming to the end of the school year, I have realised how much I rely on my apple watch. The apple watch has given me so much support that has...

Read more...

Charlotte's Applewatch

Charlotte's Applewatch

I was aged 14 when I was told I had Ushers Syndrome Type 2. I was devastated and my dreams for the future were gone in a single moment. Being...

Read more...

Usher Awareness Weekend and Workshop…

Usher Awareness Weekend and Workshop 2017

Well it finally came, a date in the diary both Lyn and I had been looking forward to for some time, Amy Winehouse on the 15th of September and 16th...

Read more...

My "Blind Date with Ushers

My "Blind Date with Ushers

On Saturday 16 September 2017, Usher Syndrome Awareness Day,  I was very humbled to join in on an accessibility workshop hosted by Molly Watt from Molly Watt Trust and Chris...

Read more...

Applewatch, I won't leave home witho…

Applewatch, I won't leave home without it

Hi Molly Watt Trust I want to thank you for funding my applewatch. I had so much catching up to do through the school summer holidays including  training with my new guide...

Read more...

September's Skydive/ Now November Sk…

September's Skydive/ Now November Skydive

Due to mechanical problems with the aircraft on Sunday 3 September 2017 we have had to re-arrange this fundraiser.  New date for this event iis Sunday 26 November 2017 We are...

Read more...

Maidenhead Charity Ball 2017

Maidenhead Charity Ball 2017

I was fortunate to be introduced to local couple Diane and Laurence Armstrong at a Christmas party in 2016. We quickly struck up conversation about both their's and my charity work. Diane...

Read more...

Applewatch, Cochlear Implant for Ush…

Applewatch, Cochlear Implant for Usher Syndrome type 1

When I first got my applewatch from the molly watt trust I was really excited, being profoundly deaf and registered SSI with usher syndrome type 1.  I hoped the watch...

Read more...

Different, Unique, Priceless

Different, Unique, Priceless

Why don't people see the potential in different or in disabled? It is absolutely down to awareness, understanding and attitude in my opinion. As a little girl my parents made sure I...

Read more...

Emotion and Music to my Ears

Emotion and Music to my Ears

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...

Read more...

ReSound LiNX² to ReSound LiNX3D - E…

ReSound LiNX² to ReSound LiNX3D - End User Review

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...

Read more...

Applewatch for kids

Applewatch for kids

I recently received an email enquiry from the Mum of a 9 year old son living with Usher syndrome.   I regularly receive email from others living with the condition I’m...

Read more...

Usher Syndrome Children's Event - Se…

Since my young daughter was diagnosed with Usher syndrome 5 years ago I had never met another child or family living with Usher syndrome here in the UK. I'd been lucky enough...

Read more...

Is the NHS listening? Usher Syndrom…

Is the NHS listening?  Usher Syndrome, when you no longer hear with your eyes!

We met a lovely lady from Northern Ireland at a Molly Watt Trust ‘In it Together’ event in Edinburgh in October 2015, she has been a hearing aid user since...

Read more...

The love of Unis

The love of Unis

Unis came into my life when I was 16 years old.  Looking back I know I did not thoroughly embrace her, I also acknowledge the constant bullying and questioning of...

Read more...

A Visit to ATOS London Offices

A Visit to ATOS London Offices

I recently visited the ATOS London Offices, for an appointment set up by my Mum, Jane. We were there to meet with Dr McKillop to discuss varying issues and negative experiences...

Read more...

Mario's day to day life with Usher S…

Mario's day to day life with Usher Syndrome

My day to day life with Usher Syndrome (Retinitis Pigmentosa) is a constant fluctuation between moments where I can ‘get by’ and moments in which my disability presents real challenges...

Read more...

Disjointed Care or Digital Data?

Disjointed Care or Digital Data?

I was delighted to be invited to meet with Digital.Health London to discuss a variety of things relating to my journey with the NHS and the various services. It certainly got...

Read more...

Bali - Sound Sensations

Bali - Sound Sensations

At the end of my work and networking trip to the other side of the world, Mum and I decided on a a trip to the beautiful island of Bali...

Read more...

Usher Syndrome / Christmas Challenge…

Usher Syndrome / Christmas Challenges

Hello, my name is Josh Parker and I have Usher Syndrome type 3. Most of you reading this probably already have an idea what Usher Syndrome is, so I’ll keep...

Read more...

A toolkit to enable deafblind to acc…

A toolkit to enable deafblind to access the world

San Francisco in November was an amazing experience, not just because I got to speak in Silicon Valley to some of the very top people in digital at Qcon I...

Read more...

Singapore Airlines - Never again

Singapore Airlines - Never again

I blogged about my not just poor but disgraceful treatment by Singapore Airline cabin staff on 13 November during my flight, Heathrow to Singapore.  I very unpleasant start to travel...

Read more...

Singapore Airlines a Very Unpleasant…

Singapore Airlines a Very Unpleasant Experience!

13th November, the start of my adventure to the other side of the world.  It had been just two days since Mum and I had come off a plane from San...

Read more...

Deafness makes you more blind

My name is Colin Hetherington and I suffer with Usher Syndrome which is retinitis pigmentosa (blindness) which gives me all sorts of daily troubles from glare tonight blindness, headaches flashing...

Read more...

Facebook - Anti Social Media!

Facebook - Anti Social Media!

Dear Facebook I am a 22 year old who struggles with accessibility. I am registered deafblind, however, I was not born deafblind but deaf.  What that means, to you, is that I...

Read more...

iOS10 Accessibility

iOS10 Accessibility

Dynamic text galore! As we all know Apple products, get fairly regular software updates.  I had read and heard a few things about iOS 10, but was intending on waiting to experience...

Read more...

My Trip to Parliament

My partner Lyn decided that we should head for the big smoke to celebrate my 50th Birthday.  We are both have guide dog owners and both love London. I used to...

Read more...

University: To Listen, to Learn, to …

University: To Listen, to Learn, to Understand!

I have been asked over and over why I didn't complete my initial dream to be a primary school teacher and for some time it was a sore subject, however...

Read more...

I was hopeful but disappointed

I was hopeful but disappointed

My hopeful journey into the Wireless Bluetooth hearing aid world.   With Danalogic ifit cs71w hearing aids, Resound phone clip+ and a mini mic. I started off by asking my local NHS ...

Read more...

Being an Usher Mum

Being an Usher Mum

Being an Ushers Mum.  In 2011 I went for routine eye appointment and after a small discussion, the optician wanted to refer me for some tests.  I immediately had an in house...

Read more...

BA listened please listen more

BA listened please listen more

After my recent report regarding very unacceptable treatment whilst flying British Airways Premium Economy to Las Vegas in May I’m very pleased to announce that they have at least changed...

Read more...

Centre Stage Applewatch

Centre Stage Applewatch

AppleWatch and smart technology are brilliant for people with Usher Syndrome!  I have Usher Syndrome, which means I was born deaf and in the last ten years I have lost most...

Read more...

Unacceptable Audiology

Unacceptable Audiology

I have Usher Syndrome, I am deafblind and my condition is degenerative. The fact that it gets worse and my abilities change all the time means that I have to make...

Read more...

Life is a Rollercoaster

Life is a Rollercoaster

As part of my ‘rollercoaster ride’ I have experienced huge ups and downs over the years. A husband and four children comes with challenges but nothing out of the ordinary accept...

Read more...

Molly Addressing Accessibility with …

Molly Addressing Accessibility with British Airways

My outward journey to Las Vegas was nowhere near the way it should have been. The necessary call to ‘special assistance’ had been made by my mum prior to the trip...

Read more...

Usher to Usher

Usher to Usher

I hope you don't mind but after researching usher's syndrome and RP I came across your blog and I wanted to introduce myself. My name is Bethanie (or Beth), I'm...

Read more...

Applewatch for Award Winning Paracli…

Applewatch for Award Winning Paraclimber John Churcher

Hi I am John Churcher and I have Usher syndrome type 2. I have always had a hearing loss and was diagnosed with retinitis pigmentosa at the age of 14...

Read more...

Safe and Secure with Accessible Ring…

Safe and Secure with Accessible Ring Video Doorbell

About a month ago The Ring Video Doorbell was brought to my attention and I was asked if I'd like to try it. I love technology, particularly assistive and enabling technology. What...

Read more...