I feel incredibly humbled to have been offered to try a pair of the most up to date hearing aids now known as "Smart Aids".

I want to thank ReSound for their kindness and I'd like to give something back, not just to them but to the Usher Community of which I am just a small part.

To ReSound I want to share my experiences good and bad so that they can perhaps take into account my findings as somebody with Usher Syndrome and that they can continue to improve the technology available to people like me.

To others with Usher Syndrome I'd love to help fund these via The Molly Watt Trust but without serious fundraising or some very generous donors it can't happen, I will however keep plugging away to try and help.

What I can do is use my experiences to at least advise those with Usher exactly what is available by way of technology.

I've put together this piece about my initial meeting with two fantastic audiologist at ReSound UK's Head Office in Oxfordshire.

My blog about the Linx2 Smart Aids, their compatibility with my iPhone and Applewatch and how this technology enhances my life will follow.

A few months ago I had what could have been a complete nightmare for me, I lost one of my treasured Linx2 hearing aids.

I was distraught, I felt completely unbalanced, unnerved and worse I feared how I would replace the missing aid.

Firstly I asked for help in searching for the tiny hearing aid in all the places I'd been along with my parents pulling apart our house as my poor sight is not very helpful when it comes to finding things, especially things so small.

I was devastated it couldn't be found and to this date has not been found.

I contacted ReSound and advised them I had lost one of my hearing aids and before I could ask about a replacement they told me I should not feel so awful and to visit asap for a replacement.

I cannot tell you how relieved I was.

A day later I visited the guys at ReSound who had a replacement ready for me, I was quite overwhelmed, however the replacement was a slightly different colour.  I wasn't overly concerned about that, just delighted to feel back to normal, however, the team at ReSound wanted me to have matching hearing aids so we agreed that on my next visit they would make sure a matching aid was available.

Several busy months passed including the rush of Christmas and I just got on as normal with my linx2, having odd colours didn't trouble me, they are small and barely show through my hair and if I'm honest I didn't see how different they were as my sight is pretty shocking, I'm at the stage where colours do tend to bleed into each other.

Just over a week ago I was booked in to see the ReSound team to talk about several projects going forward, a quick catch up on where I'm at and to be fitted with matching hearing aids.

I chose the pearly white colour, slightly easier for me to see being a lighter and brighter colour than the beige/skin colour ones.

Always great to catch up and lovely to have matching hearing aids again, however as I got home and tried to change programs I discovered my programs were gone.

Immediately I contacted ReSound who were unsure what the problem was but that they would see me as soon as possible, as it was a Friday I wouldn't be able to see anybody until Monday at the soonest so that was arranged.

It was at this stage that I realised just how much I had come to rely on the ability to adjust my hearing aids to the various different settings.

I work part time in retail and it's very busy at the weekend.  I struggled to hear the customers speaking to me, I did not feel confident in hearing what was being said to me.  The background noise was overwhelming, I had the most splitting headache when I got home.  I felt like I couldn't process the many sounds all coming at me.  To be honest it felt a little like the hearing I'd had with my old hearing aids, it was really hard work and exhausting.  

I realised how much these hearing aids had allowed me to rest my eyes and just relying on sound, I'd got used to that and now without the four programs I was used to I was really struggling.

I resorted back to trying to lipread which added eye strain to my headache.

After that day from hell I spent most of the next day in a darkened room without my hearing aids.

I felt completely shattered.

I have had my linx2 for 10 months now and after the initial 6 weeks settling in period I got used to this new way of hearing I had hoped to never look back.

This past weekend has made me realise there is no going back, I simply could not cope.

I rely totally on these hearing aids, they really do compensate as much as they can for my blindness.

Although I have not enjoyed this recent experience it is an experience that has educated me even more about the importance of the very best hearing aid technology for those with Usher Syndrome.

It reminded me how much harder I had to work with my old hearing aids and how different things are now.

I don't think people realise the huge impact blindness has on somebody already deaf.  The positive is assistive technology for the deaf has advanced and can enable fantastic access to sound.  There is nothing anywhere near it for the blind.

It always comes back to real awareness of the condition, not "I heard about it at university" "It's rare and I've never treated somebody with it before" "I've googled it" just three of the ridiculous things I've heard and it simply isn't good enough.

I'm one of the lucky ones to have the use of this amazing equipment, I think all deafblind who can benefit from these state of the art hearing aids should have them - here's hoping those that can will make it possible sooner rather than later, accessibility and is always key.