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The place to share your thoughts and experiences. You may not realise it but just by being you and putting pen to paper you can help others.

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"Be who you are and say what you feel because those who mind don't matter and those who matter don't mind"

Dr Seuss

 

Wednesday, 21 June 2017 09:48

Emotion and Music to my Ears

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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…
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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…
Monday, 08 May 2017 20:19

Applewatch for kids

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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 living with, however, this particular enquiry was interesting as it made me really think about exactly how useful an…
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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 to travel to the Usher Syndrome Coalition's family conference in America back in 2014 and knew how beneficial it could be…
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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 she was 4 years old and was managing very well. At that particular event we were very fortunate to have…
Tuesday, 14 March 2017 14:59

The love of Unis

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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 my needs had a huge part to do with the way I felt. Having been born severely deaf and coping…
Monday, 20 February 2017 14:20

A Visit to ATOS London Offices

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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 I and many others have endured at PIP assessments and as a result of inappropriate awards for many of…
Monday, 13 February 2017 17:37

Mario's day to day life with Usher Syndrome

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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 that people with normal vision do not have to deal with. Whilst I have good central vision my peripheral vision…
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