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Thursday, 21 May 2020 16:15

The Reality of Usher Syndrome

Well folks today so far for me has been a real rollercoaster of emotions.

To be honest I’m usually very straight forward and generally a get up and go sort of person, however today it felt very different!  Firstly I got up later than normal 10am which is not like me, usually by this time I have done a daily 4 mile walk in the woods with my guide dog Frankie if we are not working.  Something I know is good for my all round wellbeing.

Noticing the time I jumped up and headed to the kitchen where Lyn my wife was, she was organising breakfast for me.  I certainly wasn’t myself as It had taken me a little while to realise I hadn’t put my LiNX Quattro hearing aids in. I noticed I was only picking up the odd word from Lyn as we tried to piece together a conversation.  I then realised that Alexa was playing something in the background, it was simply just a noise!  It was at this stage I realised two things, just how deaf I am and also how totally reliant I really am on my new hearing aids.  Having worn LiNX Quattro for over 6 months now I have gotten used to hearing music and recognising songs without any problem. 

Lyn then got up and walked away bit still talking to me, wearing my new hearing aids I usually hear every word but not today.  Something else I noticed was not only have I got used to the sound I access with my hearing aids but so too has my wife!  Today I had to asked her to repeat herself several times which she did, apologising that I couldn’t hear her!  I soon put my hearing aids in!

We have been busy spring cleaning throughout the lockdown and today we were clearing out the bedside drawers, I came across all my old spare hearing aids , changed batteries cleaned tubes etc , always good as a back up I thought!  I took out my LiNX Quattros and  popped them in my ears to remind myself of what I used to live with.  The sound was horrendous, crackly and as if I’ve got a bad cold and they felt massive!

I was told by my old audiologist that I had the best available equipment, I used to think I had the best equipment and they were good but in truth they don’t come anywhere close to what I have now! 

After cleaning out I went for lunch with my wife again at the kitchen table we talked . She knew something was really bothering me.   Alexa was playing, I asked Alexa for the volume, she told me volume 3, I could hear every word perfectly wearing my LiNX Quattro, so I asked Lyn what volume was on for me without hearing aids earlier in the day, she said you start to pick up on some sounds at around volume 6, so I put Alexa on Volume 6 and it was far too loud for me, actually uncomfortable for me wearing my LiNX Quattros. 

This hit me Square in the face as to just how bad my ushers syndrome type 3 is now and how it really is catching up on me.  For those who do not know, Usher Syndrome type 3 is the rarest type and it often means we are born with both hearing and sight and sadly can lose both.

I’m not embarrassed to say this but it’s the first time I’ve ever cried at the harsh reality of deaf-blindness. I feel so damned privileged to have these aids and generally good health. It’s left me thinking very deeply today as to why I’m in this position and how I can help others.

I have a voice I strongly believe I need to shout as loud as I can so that others not able to shout can also be heard.

The deafblind community need the best assistive technology available as standard we should not have to fight tooth and nail for things that truly enhance our lives. 

The better the quality the more enhanced and enabled our lives are and the more inclusive we can be.

There is no feeling like independence and the ability to live fulfilled lives.

I know I lose a bit more sight and hearing every year but I strive to be independent as long as I possibly can so I personally strive for the best equipment to help me along on my journey of deafblindness. 

Wednesday, 07 October 2015 14:18

Usher Syndrome - The Importance of Acceptance

I have now realised after many years that always trying to fight Usher Syndrome certainly does not work.

I don't know if it's a pride thing or that I am just perhaps so damned stubborn that it gets in the way of actually letting me try to live a normal life.

I can always remember as a child being given a thick pair of NHS brown glasses I hated them with a passion and fought hard against wearing them!

Thank goodness lessons have been learnt since then and those hideous glasses are a thing of the past.

I also fought against hearing aids but now I know I am not alone.

I fought against the fact I had to give up driving.

I fought against using a cane then the realisation I needed a guide dog.

I thought I was the most stubborn person in the world until I realised I was only fighting with myself, with acceptance of Usher Syndrome, that both my hearing and sight were worsening, the very things that would help me cope I would not accept! I did not want to be “different!”.

I struggled with myself, my changing world, changing needs and I wasted years not accepting the inevitable.

I have Usher Syndrome type 3, the rarest of the Usher types, I am different but I am not alone.

I have searched my soul so long and hard and realised the guy in a wheelchair, woman with a birthmark, the boy with a prosthetic limb, old lady with a wig surely they must feel the same way as I do . So if you analyse these things who defines what perfection is in a human being? I'll tell you it's you and no one else . 

So when you wake up to that fact as I did you won’t let Usher Syndrome tear you apart.

I had for years and years quite literally allowed it to rule my life in such a negative way but now I have my life back to a certain degree.  You have to learn to live with Usher Syndrome then you are more in control.

I’m now glad to say I'm a lot happier and can for once share information openly the word BLIND  no longer hurts I can take a joke about it and even make the jokes about it . 

The most important thing is I adapted I now have more glasses than Specsavers to make sure I got what was right for me and I don't care as long as they work for me.  

I have a huge array of multicoloured canes because that's what it took for me to come to terms with cane training.

I lost my driving licence so I bought a tandem.  

I love my guide dog and can travel places I would never dream of going and have without a doubt met the most inspiring people in the world who actually turned their lives around and just get on with it and enjoy it.

My Bradley watch has even become something of a fashion iconic symbol.

I’ve learnt some Braille too. 

I strive to keep busy I now love life so much more. 

I’m excited by the latest technology that is out there.

I am on my third set of hearing aids and yes my ears are sadly like my eyes deteriorating but as anybody with Usher Syndrome, deafblindness knows good hearing aids are essential as the ability to use any visual clues diminishes.

I am grateful to the internet for finding more people with Usher Syndrome, it is rare but there are a fair few scattered all around and we are all looking for each other as sadly there is little specialist support for us so we all need each other.

This is how I came across Molly Watt, her supportive family and The Molly Watt Trust.

I was very fortunate to have a cracking weekend at The Molly Watt Trust Edinburgh Event and sat through a very informative presentation from a guy from ReSound a hearing aid manufacturer leading the way in hearing aid technology followed by a short presentation from Molly herself speaking of her work for MWT but also about how her life has been transformed by Linx2 ReSound hearing aids.

I am pretty switched on with my iPhone and after such a positive blog about Applewatch http://www.mollywatt.com/blog/entry/my-apple-watch-after-5-days I am looking to getting one as soon as possible as it will absolutely allow me access to new things including navigation and safety and now I also need access to these hearing aids, they will give me so m much more than the ones I have at present.

  

I've done research on these and they appear to be the best available hearing aids which we can now be in total control of in every situation . These aids can link via Bluetooth to a free app from ReSound so you can adjust your aids as appropriate be it where a busy, noisy pub or outside in the park . This is what we have been waiting for this is very high tech but very simple to use . 

The amazing thing is they can even be paired to the Apple Watch via Bluetooth . So now my quest to make life better and enjoy it a little more also making me safer on my many travels I will try and try hard to get these at the top of my 

Wish list . 

Remember life is what we make it if we adapt it gets better we don't have to fight all the time . 

Technology is definitely the way forward as I know it can and will make a huge difference to my life ..

 

 

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