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Tuesday, 09 February 2021 10:39

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

Written by  Colin
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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 just over a year. Donated by the Molly Watt Trust in collaboration with GN Hearing and The Hearing Clinic, Glasgow.

I was the first person to be asked to take part in a very important and necessary project to acknowledge the real hearing aid need, over and above deafness alone for those living with deafblindness.   I have Usher Syndrome type 3 which is incredibly challenging.

I am now living with a severe to profound hearing loss and around just 3 degrees of central vision, no peripheral vision and total night blindness. 

Usher Type 3 is different from both Type 1 and Type 2 and the rarest, it really hits home later in life. 

I went through my teenage years ok but noticed something with my vision was wrong at around 21 years old.  I’m sure you’ll appreciate I only see through my eyes and presumed nobody sees in the dark, I didn’t have any idea I couldn’t see because I had a condition causing night blindness! 

My deafness came later. 

I remember at about 28 years old I applied for a very good job at a nuclear plant working in the turbine hall . There was over 800 applicants and I was told the job was mine, however, after a medical I was told I had failed due to my hearing loss. You could’ve knocked me down with a feather! 

So back to reality it was one of the many kicks in the teeth that people with Usher often deal with!

I progressed with life, had to work really hard even set up a couple of  businesses along the way but at the age of 45 I reluctantly had to admit defeat.  By now my eye sight so bad I couldn’t even find my way to the bus stop on a winters night!

I applied for a guide dog and got the result to my genetic testing which took a while but came back that I have Usher Syndrome Type 3, I was at this time told I needed a hearing check up!   My hearing quickly went down hill from mild to moderate to severe now I’m tipping severe to profound. 

To date there is nothing that can enhance my blindness accept to use assistive technology where I can, however options for the deaf or blind don’t always fit for deafblind people, all too often we have to muddle through either as a blind person person with deafness of a deaf person living blindness rather than seeing the bigger picture!

I’ve found in my experience I need to continuously adjust and try to stay ahead of the curve just to live my life. I’ve gone from cane to guide dog to specialised wrap around glasses to multiple hearing aid types. 

So why is the very best available access to sound so important to somebody deafblind like myself? 

Enablement to access sound, not just to hear but to hear so well you can rely on your hearing to keep you safe and inclusive. 

Struggling to get by isn’t ok when there is tech to make life so much more doable.

I feel very privileged to be the first person chosen as part of an important and, excuse the pun ‘eye opening’ project being run by the Molly Watt Trust with the support of GN Hearing and in my case The Hearing Clinic, Glasgow.

The project is to demonstrate the additional challenges of people deafblind over and above deaf or blind and the absolute need for us to access the very best in hearing aid technology.

Molly Watt Trust collaborated with GN Hearing and Chris Stone at The Hearing Clinic to enable me to be fitted with Resound LinxQuattro smart hearing aids. 

The day I was fitted with my hearing aids I learnt more about my hearing than I had ever learnt in my years of wearing hearing aids and to say I was blown away by my initial experiences of sound really is an understatement and here I an a year on and life has never sounded or been better even through this awful pandemic.

I have blogged about my experiences but been quiet as little happening with the many lockdowns that have been in place however what I have done is take the time to reflect on what smart hearing gives me.

I can now hear traffic when I’m out with my guide dog, I hear 360 degrees around me which when you consider I only have 3 degrees of central vision.  To say my hearing compensates for my blindness, I think the numbers say it all!

I feel safe, my confidence and ability to get around hugely enhanced.

Throughout lockdown I’ve been out every day rain hail or shine on many walks, fully  appreciating the noises of nature, the different birds singing.  It’s also the simple things too like listening to songs or being able to hear a mobile phone conversation. 

I am one of many people who really need the very best in smart hearing aid technology which is why they need to be made available to the deafblind community.

Unfortunately at this time Resound Linx Quattro are not available on the NHS which is madness when considering the positives they bring to my relatively small community 

Yes they appear expensive initially however when you look further ahead - enablement to get out and about without fear of danger, when you’re able to work, access telephone calls, be inclusive, live your life and not feel the isolation often attached to Usher Syndrome and all the problems attached to it of which mental health is often a big part.  When you consider these things are these hearing aids really so expensive?  I think they would save huge amounts in financial support for many.  Financial independence is beneficial to all.

Over the years I have spoken with numerous audiologists who see best available hearing aid tech as the best option for me as they will enhance my hearing for as long as is possible, and in doing so compensate a little for my blindness until the possibility that I may require cochlear implants, something I hope doesn’t become necessary, however should it become my only option the NHS would fund this at a cost exceeding £50k plus and yet won’t provide top quality hearing aids at a fraction of the cost - WHY?

Please help us on our quest if we don’t shout out we will not be heard!

If you want to help or make a donation so someone else could get the amazing benefit of these wonderful hearing aids which do change life’s take it from me as I know, then please contact www.molly-watt-trust.org

Together we will change life’s for the better. 

For now I’m thankful to the Molly Watt Trust, GN Hearing and The Hearing Clinic and hopeful Molly Watt Trust can continue to work with GN Hearing and help others like myself.

 

 

 

 

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