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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

 

Saturday, 18 June 2016 15:17

Unacceptable Audiology

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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 continual adaptations in every task that I do. This leads to a continuous stream of appointments, meetings, letters, emails…
Saturday, 18 June 2016 13:34

Life is a Rollercoaster

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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 one child was born deaf and needed additional time and support.   The deafness diagnosis brought challenges within the…
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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 and my specific accessibility needs spelt out then, again at check in and still sadly the necessary provision was…
Sunday, 22 May 2016 18:50

Usher to Usher

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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 23, I'm from Staffordshire but currently living in Newcastle upon Tyne and like you, I have Usher's Syndrome. I was born…
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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, was then registered partially sighted in 1992 at aged 19 and registered blind in 2000. Currently, I have about 50%…
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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 interested me about this particular doorbell was its easy wifi connectivity to both iPhone and Applewatch via an…
Thursday, 19 May 2016 07:55

Global Accessibility Awareness Day 2016

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Usher Syndrome for me means my whole world is accessed via accessible assistive technology. A year ago to the day I was fitted with Resound Linx2 hearing aids.  It has been quite a year, a year that I have experienced some amazing things. I was born deaf so very used…
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Walsall 2016 'Hear no. See no, Techno' Jo Milne, Colin Hetherington and Me. Once again we were blessed with a room full of people all on similar journeys.  With Usher Syndrome or RP, friends or family members of somebody with either condition, all ages, we were all there, United and…
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