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Friday, 10 January 2020 15:10

A Decade of Progress

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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 might provide hope for those living with progressive conditions such as mine.  As hard as it can feel there is a future, it will be challenging but hard work and determination can see you through.

I have always hated New Years, I’m that emotional sobber in the corner as midnight strikes!
For me the concept of time is quite terrifying, to be frank I have always tried hard to not look too far forward nor back!  However it’s this time of year where you’re forced to think about these things. 

And then there’s the people talking about the past DECADE as we walk into the next.. well my mind has been having an inevitable real field day thinking about all those years...

10 years ago, I was 15, had been registered blind a year and it was not long before I was put on the waiting list for a Guidedog. I was at boarding school, where I was tormented for being different - I couldn’t sign British Sign Language, so therefore I was “a sad excuse of a deaf person,” I didn’t look blind so therefore I was “pretending,” I had both pupils and teachers grind me further into the ground daily. All I wanted was to be like everyone else, to have no worries besides my GCSEs - not the worry of not being able to actually see enough to read them let alone sit the exams and pass. 

At 15 I was put on extremely strong medication to try and rectify a secondary eye condition (Cystoid Macular Oedema,) in the past decade I was on these twice for between 6-8 months. Both times I went from an average size 8/10 to a size 4/6. My mental distress was at the brink and I’d spend most nights crying in pain. The medication never worked. I even had injections and eye drops to try and save my failing central vision - none of which worked. All this while I was at a school who to be quite honest, didn’t want me there. 
I had 5 degrees vision left. (Thankfully it’s been stable since.) 

Fast forward a few years, I lost friends I gained friends I found the college who restored my faith in humanity... I found *Molly* again. I have Strode college in Egham Surrey to thank for that.  I’ll always be eternally grateful for the teachers, the support and of course the life long friends I made there. 
Leaving college I proved the little doubtful molly I had inside me that I WAS worthy of succeeding, I even got into university. Sadly university wasn’t to be even after my tireless battle with the authorities to gain the support I absolutely deserved. 

At 20 I got a job at Apple where I worked as a specialist and these guys, I’ll always thank for seeing my true value. I found my niche - technology! The ever impactful tech that had gotten me that far and I hadn’t actively realised it until then. 
My confidence built up and I built a field of contacts, I bought my first applewatch and wrote a blog that went viral and literally changed my life.

 After the applewatch blog I made contact with GN Hearing who's smart hearing aid technology would go on to enhance my life.  GN produced the first hearing aids completely compatible with applewatch and iphone meaning I had the a pretty enabling awesome accessibility toolkit.  My confidence was high and as a reult I left apple to persue a self employed journey in accessibility, web and app design and usability.

My first dear Guidedog Unis who had come into my life when I was 16 years old was forced to retire early, saying goodbye was to date one of the hardest things I’ve had to do.  Thankfully her forever home is with a good family friend and she is now loving a happy retirement.


My second guidedog the beuatiful little Bella aka Welly trotted into my life and has been instrumental in my life since. Thanks to that poppet, I can earn a living and do so safely and with genuine happiness having my little best friend by my side at all times. 

I have been able to work with massive companies like Apple (HQ,) LinkedIn, NHS Digital, Spotify, ASOS - the list goes on.

I started working with the amazing guys at Sigma - they too, have been amazing in contributing to my growth in independence, knowledge and confidence. 
I have travelled the world, travelled europe delivering keynote presentations and meeting amazing people. Making memories ?

And here I am, I am the person I’ve grown into today and well, I'm pretty proud of myself. 

Though things as always remain challenging, the past couple of years have been steady upward progress for me.
In 2019 I proved to myself that I could get even *better,* and with my Molly Watt Talks journey have done incredibly well - if I may say so myself! Also as a person, I’ve grown so so much. 

I won’t finish saying it’s all been perfect - it’s been awfully hard at times, I still battle with my mental health and spend some days in bed crying at the thought of leaving my house. 

That’s life though, and never be afraid to sit a day out here and there - it’s not easy being human, learn to give yourself a break and to not feel bad. One thing I learned just in the past year. 

My wish list for this next year/decade is to grow, to advocate for others, to travel, to work and meet more awsome people, buy my own home and to see others living with my Usher Syndrome thrive.

So before I sign off I want to thank YOU all for still being here - I see you! Not literally obviously, I am blind (heh) you’re so very appreciated.

May we all continue to grow, and learn. Here’s to the next 10 years...

Do you have a year plan, a ten year plan or a wish list?  If you do please consider sharing, write us a blog we can share and lets make these things happen.

Friday, 13 December 2019 08:26

Sound Sound So Good

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I have now been wearing my smart hearing aids for over 2 months. 

I’ve had a few issues, more relating to myself than the hearing aids.  Firstly it would seem I have very waxy ears, as a result I did need to visit the audiologist to discuss this as it did affect the microphone.  A good clean and some adaptations helped.

I am very into enabling gadgets and very creative in getting things to work for me so understanding what will and what won’t work with my hearing aids has been of interest to me alongside appreciating the new sounds I am now fortunate to hear.

I have invested in a television that has bluetooth so will be interested in seeing if I can connect my hearing aids to it once it is set up.

I also have some new speakers which work alongside the tv and am really enjoying hearing music via these for the first time.  I can identify different instruments playing and lyrics which is fantastic.

GN do something called a multi mic which I believe would connect to the television if my aids do not connect directly.

My confidence has grown since wearing my new smart hearing aids, hearing when deafblind is so important to safety. 

My wife Lyn and I recently travelled to Banff, Inverness to visit family, a fair journey for us.  Lyn’s guide dog had to retire recently so it was the two of us and Franky my guide dog who I have only had a short time.  We travelled safely and confidently.

It is a journey we have done quite a few times so quite familiar with the route, however, the one thing really different for me this time was the accent, I was able to pick up the difference, some very pronounced letters and words which was brilliant.  Deaf people will always struggle with varying accents so I was really pleased, I’m sure I will be picking up more ‘Doric’ language skills going forward. 

I cannot believe just how much more involved I feel now I am able to hear so much better. 

Strangely I hadn’t realised just how much I was missing out on and how isolated I had become until now.

Being able to hear and to connect and directly stream sound really is life changing and I feel that as time goes by I really will be picking up more and more.

I am really loving the fact that “Sound sound so good”

Thursday, 28 November 2019 18:23

Readiness for the ‘Big Day’ 

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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!

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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

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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.

Tuesday, 01 October 2019 16:20

Meet Colin

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Our first case study (CS1) is Colin age 53 and living with Usher Syndrome Type 3 the rarest of the Usher types. Colin has worn hearing aids since he was 40 years old and is currently severely deaf and has been registered severely sight impaired (blind) for several years.  Colin is oral.

Having worked full time in management until his early 40’s when the deafness and progressive blindness of Usher Syndrome became too severe feeling he had neither the tools or the support to continue so very reluctantly he chose voluntary redundancy. 

Usher Syndrome began to take over

Having felt forced to leave full time employment Colin then attempted self employment in an endeavour to continue working.  This also proved to be incredibly challenging as a result he could not continue.  Usher Syndrome was making the decisions for Colin his blindness could no longer be compensated by his hearing. 

Making adjustments

Cane training and some time later Guidedog training changed his life giving back the ability to be more mobile and more able to escape the isolation of the condition. Making new friends and finding a new found confidence Colin was able to more accept his condition. 

Colin like most with Usher Syndrome wants to be busy so volunteers for charity.  Socialising had become particularly difficult without sight and average sound from NHS hearing aids which so often made social environments difficult or unbearable.  Being completely night blind and unable to hear environmental sounds and sounds of danger when out causes extreme anxiety and often causes many with Usher Syndrome to self isolate. 

Colin was fitted with ReSound LiNX Quattro smart hearing aids on 16 November 2019.

Follow his story here.

Thank you to our supporters:

Previous Usher Projects

Previous Usher Projects

We have undertaken a number of projects to help those with Usher Syndrome.

We appreciate the efforts of all who take part in fundraising events for us and assist in not just our Usher Projects but in supporting other Charities who support those with Usher Syndrome.

For fundraising ideas or to support MWT please contact us.

"No act of kindness, no matter how small, is ever wasted."

Aesop

2015 - Present: Global Giving

Usher syndrome charity projects.Our most current project - as of April 2016 we have donated 36 Applewatches to the Usher Syndrome community and have a considerable list.

Applewatch with its unique accessibiliy feature enables safe navigation for the deafblind using prominent haptics, along with new and accessible apps to make life easier and more accessible leading to a new independence.

In order to use the Applewatch there has to be an iphone.  In choosing Applewatch it was noted by the Trustees that most people now use a smartphone, many choosing iPhone because of it’s amazing built in accessibility.  The AppleWatch also has amazing bluetooth connectivity and as a result is capable of connecting to certain hearing aids which then allow more enhancement to everyday life.

This project is very popular, we are now looking at various ways of funding the project and are delighted our project has been accepted by GlobalGiving Foundation Inc.  Visit our donate section or click on the link below.

£350 can change somebody's life, reduce isolation by enabling them to leave their homes and navigate safely.

 

Click here to donate to this fantastic project!

Thanks in advance

2014 - 2015: The Bradley

bradley projectThe Bradley world's first tactile watch.

Not only was this project exciting as the product very innovative for people with Usher Syndrome being completely tactile, please see Molly's blog.

This was another very popular project and was funded in numerous ways.

The sale of our anti-bullying children's book, Frog, Froggy and Froggit, written and illustrated by Molly-Jane Watt helped fund the project.  This book was published and remains available to purchse via the website.

The Molly Watt Trust funded 22 Bradley watches to the Usher Syndrome Community whilst the project was live.

2013 - 2014: UsherEyes

UsherEyes - the funding of protective eyewear was funded to the Usher Community.  Usher eyes are incredibly sensitive and this sensitivity varies throughout the day and differs throughout the year, hence the need to protect.

The Molly Watt Trust funded in excess of 40 pairs of protective eyewear whilst the project was live.

2012 - 2013: Access to Reading

access to reading

 

Our first project Access to Reading was a huge success in just over a year MWT was able to fund and provide more than 70 eReaders to people living with Usher Syndrome.  

For those with a little sight eReaders are ideal as they offer good contrasts, no glare and larger text. Some wrote they'd not been able to access a book in many years and that being able to read again a complete pleasure in what is often an isolating world.

The success of this project led to Rekindle where we invited those lucky enough to be able to upgrade their eReaders to consider donating their old models to us.  This enabled us to donate these to others living with blindness who could benefit - both projects remain in place for an application form please contact us.

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