Being diagnosed with a rare condition like Usher Syndrome is isolating. However, the Internet has been a lifeline for me. When times have been tough and I've needed a friend, an opinion, somebody going through similar to me I was able to look online and find a friend. It was so useful I was able to set up a group and find others with Usher Syndrome all around the world, also people with RP or deafness, we had somewhere to "meet" share experiences and support each other. When I look back I was lucky, my Mum had made quite an…

I wrote about my very early experience with my Apple Watch and I'm continuing to use it, experimenting with the apps that I am able to access and those I think can be helpful / useful to me as a deafblind, guide dog owner. My Apple Watch certainly isn't an expensive gimmick to me. Taptics is definitely the most amazing accessibility tool for those with dual sensory impairment. At the moment it is very rare to find anything with good accessibility for the deafblind.  Up until now it has been very much for the blind or the deaf and single…

Having Usher Syndrome means deafness with a progressive blindness and for some complete blindness. None of us can possibly know if we will be unlucky enough to lose all sight, however it is a consideration. I lost so much sight so quickly the thought of any further progression has been scary and something I choose not to think about it unless I have to. At the beginning of the year I found myself in that position, through no fault of my own, where was I going with my life. The profession I'd originally dreamt of was gone and now at…

When I look back I can see I isolated myself when I was first diagnosed with Usher Syndrome. I could carry on as a deaf person, no difference. I went to school, I was anxious as I struggled to cope with my changing world. I couldn't wait to get home to the safety of home and my Laptop.  I'd always have an excuse not to go out! Communicating online was easy, back then we all had Bebo and MySpace, before Facebook and Twitter, I felt no different! I was in my bedroom chatting to my friends, I didn't have to…