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Thursday, 27 November 2014 00:00

When Denial Becomes Reality

Retinitis Pigmentosa (RP) has always been something that I've denied but this year as I turned 39 it became clear I couldn't deny it anymore.

I was 7 years old when the news came that there was RP in my family.  My sister was the first of us to be officially diagnosed it was the early 1980's and there was very little information around then she recently told me that back then she was informed by the specialist at Moorfields that there was no cure or treatment, she would most likely go blind and not to have any children!  However, she now lives in San Francisco with her husband and two amazing children Lauren and James both in their early twenties and both unfortunately have RP.

My memories of that appointment are vague all I remember is having eye drops that made me unable to see for a few hours which I remember was scary especially at 7 years old. From there on I didn't think about it, RP was just an occasional conversation piece that we had an uncurable eye disease in the family that might make me blind but probably not until I was very old!

I continued to live my life and was lucky enough to have an amazing one with many extreme highs and lows enough to write a pretty good book but that's for another time. I travelled the world working as a singer beginning my career as a Bluecoat at Pontin's and eventually becoming a touring cabaret act performing at holiday parks and hotels all over Europe. My travels eventually took me to Glasgow where I began to settle and build a new life. RP was still very much at the back of my mind even though I knew I was struggling with going from light to dark places, by this time I was in my mid twenties. I was building a career in car sales was in a relationship and the years began to fly by without much thought of my eyes.

By the time I reached my 30's my thoughts turned to becoming a father, I never entertained the idea before, nothing to do with RP just down to having too much fun working in entertainment. On November 4th 2007 my life changed when Ellie was born, I took to being a dad as naturally as I take to the stage and as the tattoo says on my right forearm "It's like a song I've never heard I've never sung but know the words" a line from one of my favourite songs which describes becoming a father.

The bond between Ellie and I was so strong unfortunately the same couldn't be said for the one between myself and her mum and the relationship came to an end by the time Ellie turned 3.

At that time I had gone back to singing again driving all over the uk performing as a cabaret again. I made the hardest decision of my life to move back to manchester to be near family and to give up singing again so I could regularly make the long drive to bring Ellie down from Glasgow. By this time even though my eyes would struggle in darkened rooms I could still drive with no problem. As hard as it was trying to start again being so far away from my little girl I knew it was something I had to do, I had a gut feeling that it would eventually work out and that's when I met Amy.

Amy came in to my life and brought with her the promise of a love filled life I thought I'd never find. Amy had two boys Harvey and Louie, Ellie and I slipped into their world like it was just meant to be.

Within 2 years together I had gone back to car sales trying to build our life we were blessed with the arrival of the cutest baby boy you will ever see Austin, he arrived in June 2013 and on Xmas day that year I asked Amy to marry me and she said yes!

We then started to plan our wedding for New Year's Eve 2014. The following year everything changed!

By May this year my eye started to get worse and a check up at the local opticians confirmed my worst most denied fear my RP had started to rapidly progress and my driving days were over. My first thoughts were of Ellie and how was I going to be able to see my little girl? My second was what was I going to tell work?

I told work straight away and they let me go on the spot as I could no longer continue my role without a driving licence.

My little families world began to unravel, I went to the specialist who confirmed me as legally blind and gave no other answers. I then went to the job centre and asked for help. From there on it has been a constant battle to try and get the help we so desperately needed but were plunged into extreme poverty falling behind with bills and just finding it extremely hard to survive due to the horrendous waiting times for PIP etc never mind not being able to see Ellie due to the cost of collecting her from Glasgow.

As the months have passed this year my eyesight has rapidly declined to the point where I have now started long cane training and am on the list for a guide dog to try and get back the independence I have lost as I now suffer with anxiety due to my vision loss my confidence has all but gone and I very rarely go out alone.

The things that have kept me going is getting married to the love of my life on New Year's Eve as planned and meeting an amazing friend in Simon who I met through one of the facebook RP support sites on the advice of my sister in San Francisco.

Simon has Usher Syndrome Type 2 and it was obvious from the start we had so much in common other than our crap eyes. We shared a love of music and the same sense of humour. He is my best man for the wedding. When simon and I became friends he invited me to come round to his house as he had a mini recording studio so I could sing and let off some steam. Here began the start of a little confidence returning and the idea for my RP project.

Simon and I had held a couple of informal meetings with other RPers and that's where we met Colin who also has Usher Syndrome Type 3, a very special person who was equally passionate about connecting those who felt alone.

As time and eye sight went by I became more vocal and passionate about the injustices visually impaired/blind people were going through all over the world and that's where "Stand By Me RP" was born.

I was asked to perform at a meeting for people with RP and Ushers in the north and decided to created a theme song for us that I could share worldwide, I decided to use "Stand by me" http://youtu.be/qxFdmqZoceo because everyone knows it and then I re-wrote the lyrics around the fears a lot of us have. Through the support of the VI community and the amazing people who have responded to the video and continue to keep sharing it the message has reached place and people I never thought I would reach.

Molly and her incredible family and Joanne Milne who's story reduced me to tears in seconds in fact I have written a song about Usher Syndrome for Jo which we will unveil together in the near future. All of a sudden my future looks good again I am determined to take the disease that has stripped me of my confidence and use it with my passion for music to help as many as I can whilst in turn helping me find me again. Amy and I are stronger than ever and our wedding is only weeks away and even the recent trip to the specialist who confirmed that my central vision is deteriorating fast could not dampen my new found spirit. I will begin 2015 a married man and plan to fight to raise awareness for RP and Ushers with your help of course

Thursday, 13 November 2014 00:00

Lets Talk Usher

I'm Jo from Newcastle, I'm 40 years old and I was born profoundly deaf.  I had my 'eyes' and I used them for lipreading, scanning the world around me...  & being deaf was just who I was. We, as deaf people, treasure our eyes so it was absolutely heartbreaking to discover I had Usher Syndrome.  I became registered blind in my 20s and looking back over my childhood/growing up - it's obvious I had Usher - I put 'linking a friends arm' down to the fact that I was lipreading and was a little clumsy!

It takes a huge amount of courage living life as a deafblind person and my motto is 'one day at a time' and never to put myself in situations that make me feel uncomfortable.  Instead I focus on all those things I do enjoy - chatting and laughing with those close to me and long walks in the countryside while my guide dog, Matt, runs free.

Recently I had bilateral cochlea implants (http://youtu.be/IyDdVJ81Ixs) which were life changing and the youtube video of the 'switch on' went viral - it was heartwarming how people across the globe admitted to taking their senses for granted.   Like the Watt family, it has always been a mission of mine to raise awareness and 'talk' about it.  20 years ago, Usher felt like a dirty word and how wrong I was. It's because I have Usher and I'm deafblind that I have such a positive attitude ... nothing is to stop the younger generation of having the careers of their dreams and reaching for the stars.  Life is truly how you make it.

A smile goes a long way and it touches my heart every time I see the beautiful and inspiring Molly Watt smile... and the rest of the world smile with her! 

The more awareness of Usher Syndrome we raise, together - along with our families & loved ones, we are one step closer to the mission of The Molly Watt Trust

Wednesday, 12 November 2014 00:00

Partially Deaf, Partially Sighted, Totally Usher!

My name is Fabrizio, I have Ushers and I am 35 years old. Or to put it another way, I am 18 with 17 years worth of experience!

Like many Ushers I was born deaf and again like many that is all I thought it was. I did speech therapy, I played lots of sports, particularly rugby, and over time I got confident in myself and really did not see the deafness as a barrier to achieving any realistic goal that I set myself. I did notice that I suffered from night blindness in my teenage years, but thought nothing more of it. I also found playing rugby a bit more difficult because I started to struggle to catch balls thrown to me from the side (but not from the front or up high) and I put it down to being outside a centre with a really weird passing technique. With hindsight, it is one of the interesting things that you realise as an Usher, the brain will very subtly adapt to accommodate any shortcomings without you even noticing.

And so life went on. I went to university, I learnt how to drive a car and then I got a job in the civil service. Around 2004, at 25 years old, I thought that I really should look into the night blindness. I was working in London at the time and walking among the daily commuters in the dark was proving to be quite a bruising challenge. So my GP referred me to the Chelsea and Westminster for a specialist eye examination. The doctor assigned my case was a pretty girl of Iranian descent. She looked into my eyes and said, “Hmmm, I think I would like to run some more tests.” Five hours later, three rounds of eye drops, a boring cycle of waiting in the waiting room and then having bright lights shone into my eyes, and a brief examination by her boss produced the verdict.

“I think you have RP, Retinitis Pigmentosa” she said. She showed me blown-up pictures of my eyeballs (I still have them and so included with this post) and pointed out the faint dots scattered around. She further explained that in view of my deafness, it may well be a condition called Usher’s syndrome, but she would have to refer me to another specialist for that diagnosis. I took the news pretty calmly, not least because it had been a long and very boring day and the whole thing felt rather surreal. But things were going to get a bit more amusing. “What are you doing on Saturday?” she suddenly asked. “Wow” I thought, “maybe this day is about to get better?” So I replied that yes I was free. “We have a group of trainee doctors and we like to have good subjects for them to practice diagnosing.” Noticing the odd expression on my face she paused. To which I explained to her that asking a man if he was free on Saturday usually meant something else. Her subsequent blush was the highlight of my day! She was a nice girl and yes I went along and got peered at by a group of trainee doctors. Some of them even got the diagnosis right!

It has to be said that not much changed for me. I went to see more specialists and the Usher diagnosis was confirmed. I got on with things, I had things to do, places to be and I wasn’t going to let Ushers stop that. I moved to Bristol and was still driving. It felt like a problem that could wait. The tipping point for me came about five years later when I started to get worried about the driving. For those who know Bristol, it is not a car friendly city and there are a lot of reckless cyclists and pedestrians seemingly bent on lemming like dashes into odd places. I realised I was missing things, important things and it started to feel like one day I was going to just not see someone with tragic consequences. So I referred myself to the eye specialist and the DVLA who came back with the devastating judgement that I would have to surrender my driving licence.

It was quite a shock, which seems silly really as I should have been expecting it. More than anything else, it was the perceived loss of independence that really got to me. I wanted to continue to be self sufficient, to be able to go anywhere I wanted and to do what I felt like doing without having to rely on others. It was how I lived my life, with the attitude that my disabilities were not going to stop me. In some ways that feeling never goes away, if I am having a bad day that feeling of not being as independent as I once was bubbles up. I have grown more comfortable with it over the years. I can even make the joke that others have to do the driving so I will have to do the drinking on their behalf. But that little spark of resistance is still there, couple that with my innate stubbornness and no doubt I do persist in doing things that others would give up. For example I still cycle to work whenever it is light enough. Risky? Undoubtedly, but I feel it is manageable and I absolutely do not want to give it up unless I have to. I feel that as an Usher sometimes it is vital to stubbornly hold onto the things that are important to you even if it does involve taking a bit of measured risk on the way. It is the only real way we have of showing that we will not let our disability rule us and we are still capable of having meaningful lives and having fun while we are at it.

So yes life has changed a lot, but that is inevitable for anyone, with or without a disability. I have to make some adjustments, but I find it is more a matter of planning ahead and thus avoiding putting myself in difficult situations. Work is sending me to Copenhagen for a couple of days next week. I am looking forward to it because I have never been there before, but I am going on my own and a northern European city in late November is going to get dark early which is a bit daunting. However, I have planned the route and I am informed that the Danes are superbly friendly and helpful. In fact, I even have a small bet with myself as to whether I can make it to the train at the airport while carrying my white stick without receiving an offer of help. Sometimes you just have to ignore caution and take a bit of risk to experience the best of life and people.

 

My advice to other Ushers is don't let the fear, particularly of the dark, rule you. Try to avoid staying at home because facing that dark and noisy world is so daunting. You are probably not going to really enjoy clubbing, but there are still so many things you can do. You just have to want it bad enough and to be willing to plan well to make it happen. Failing all that, just cheerfully jump onto a friend or even a stranger for help. You can be amazed how positively responsive they can be.

Or as it says on the T-shirt – Partially deaf, partially sighted, totally Ushers!

 

Tuesday, 11 November 2014 00:00

What is Usher Syndrome to Me?

What does Ushers Syndrome mean? That was the very question I had asked myself when the doctors told me I had lost some of my eyesight and that I would very slowly continue to lose more. I didn't think they were telling the truth at first. How can you live your life and not know that you are are somewhat blind? My name is Clare Weigel, I'm from across the pond in Florida and I am 17 years old. I had the pleasure of going to the Boston Ushers Syndrome Coalition over the summer where I learned I was not alone. 
Before I found out, I had no idea that this had been slowly happening over the years and caused my deafness also. This all began with a routine eye doctors appointment. The doctors saw something wrong with my retina and I was sent to a couple of other places until the place where I had a full day of long, tiresome tests that included one with flashings lights in a pitch-black room for over two hours and many more. The irony is, that as I went through all of this, was that I thought they weren't going to find anything wrong.
After the tests were completed, I was in shock when they first told me, no tears nothing. Then they said it was illegal for me to drive, then all of my emotions came flooding out, whatever little independence I had, was gone. I had lost all of my peripheral vision and night vision, but still maintained good central vision. But I would slowly lose more. 
After, I kept it to myself, worried that people were going to treat me differently, like I was handicapped. Which in reality, I was. I had tripped over backpacks in the hallways at school, run into people since I couldn't see them, and stumble around hopelessly at night since the disease also took away my night vision. People think I'm rude if I can't see them if they're right in my blind spots. I often wonder if I should really tell them the truth. This is one of the "hidden disabilities", it's not always noticed that I'm deaf. Now I was categorized with the "blind" people as well. 
For months, I would think about it and wonder why had God given me more problems? It was already challenging to be deaf but to be deafblind?  I already had problems of my own, I didn't need this. Then, I began to tell my closest friends and I was amazed. They were nothing but helpful and kind about all of this! They guided me at night, listened while I ranted about the unfairness of it all, and they were there for me. Now, I know that people are genuinely good at heart if you are willing to give them a chance. 
When I was on a choir trip with my school to Jamaica last spring, we were singing to people who had less than us and they had pure joy in their hearts. I wondered if I could be as joyful as they about my disease? Then we went out one night as a break from singing, we were on a catamaran boat. We left in the late afternoon and as we were out on the blue waters, I realized the sky was getting dark. I was slightly panicking because there weren't any lights at all on the boat or the dock (which we had to cross over another boat to get to) then I realized I needed to ask for help. I absolutely hate asking for help! However, I asked a friend of mine who was more than kind enough! I learned a big lesson from that trip, I need to be happy with Ushers and know it is perfectly okay to ask for help.
I am a cheerleader for my high school and often, I have difficulty hearing the counts/calls for cheers and seeing the girls next to me at football games. But it's a challenge which I am willing to take on and love doing! 
At the Ushers Syndrome Coalition, I met so many wonderful people who inspired me to think of Ushers in a positive way and its just a part of our identity. I met Molly at the family dinner and I was so excited just because she was British! Then as I talked to her, I had a realization that I needed to pull it together and get over the fact that I was deafblind. 
There are still moments where I wish I could be able to do some things that my friends get to do since a lot of it is usually in dark and loud places. But I've learned over the years that I'm not really missing much. 
What is Ushers Syndrome? It's not a disease, it's just a part of me.
What does Ushers Syndrome mean? That was the very question I had asked myself when the doctors told me I had lost some of my eyesight and that I would very slowly continue to lose more. I didn't think they were telling the truth at first. How can you live your life and not know that you are are somewhat blind? My name is Clare Weigel, I'm from across the pond in Florida and I am 17 years old. I had the pleasure of going to the Boston Ushers Syndrome Coalition over the summer where I learned I was not alone. 
Before I found out, I had no idea that this had been slowly happening over the years and caused my deafness also. This all began with a routine eye doctors appointment. The doctors saw something wrong with my retina and I was sent to a couple of other places until the place where I had a full day of long, tiresome tests that included one with flashings lights in a pitch-black room for over two hours and many more. The irony is, that as I went through all of this, was that I thought they weren't going to find anything wrong.
After the tests were completed, I was in shock when they first told me, no tears nothing. Then they said it was illegal for me to drive, then all of my emotions came flooding out, whatever little independence I had, was gone. I had lost all of my peripheral vision and night vision, but still maintained good central vision. But I would slowly lose more. 
After, I kept it to myself, worried that people were going to treat me differently, like I was handicapped. Which in reality, I was. I had tripped over backpacks in the hallways at school, run into people since I couldn't see them, and stumble around hopelessly at night since the disease also took away my night vision. People think I'm rude if I can't see them if they're right in my blind spots. I often wonder if I should really tell them the truth. This is one of the "hidden disabilities", it's not always noticed that I'm deaf. Now I was categorized with the "blind" people as well. 
For months, I would think about it and wonder why had God given me more problems? It was already challenging to be deaf but to be deafblind?  I already had problems of my own, I didn't need this. Then, I began to tell my closest friends and I was amazed. They were nothing but helpful and kind about all of this! They guided me at night, listened while I ranted about the unfairness of it all, and they were there for me. Now, I know that people are genuinely good at heart if you are willing to give them a chance. 
When I was on a choir trip with my school to Jamaica last spring, we were singing to people who had less than us and they had pure joy in their hearts. I wondered if I could be as joyful as they about my disease? Then we went out one night as a break from singing, we were on a catamaran boat. We left in the late afternoon and as we were out on the blue waters, I realized the sky was getting dark. I was slightly panicking because there weren't any lights at all on the boat or the dock (which we had to cross over another boat to get to) then I realized I needed to ask for help. I absolutely hate asking for help! However, I asked a friend of mine who was more than kind enough! I learned a big lesson from that trip, I need to be happy with Ushers and know it is perfectly okay to ask for help.
I am a cheerleader for my high school and often, I have difficulty hearing the counts/calls for cheers and seeing the girls next to me at football games. But it's a challenge which I am willing to take on and love doing! 
At the Ushers Syndrome Coalition, I met so many wonderful people who inspired me to think of Ushers in a positive way and its just a part of our identity. I met Molly at the family dinner and I was so excited just because she was British! Then as I talked to her, I had a realization that I needed to pull it together and get over the fact that I was deafblind. 
There are still moments where I wish I could be able to do some things that my friends get to do since a lot of it is usually in dark and loud places. But I've learned over the years that I'm not really missing much. 
What is Ushers Syndrome? It's not a disease, it's just a part of my life. If I had the chance to reverse it, I wouldn't do it. Because it has taught me so many things that I wouldn't know about life.f my life. If I had the chance to reverse it, I wouldn't do it. Because it ha

 


  

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Applewatch Awesome but Hearing Aids …

I recently received an applewatch from The Molly Watt Trust, via their GlobalGiving project. I love gadgets. I have ushers syndrome type 3 which is gradually robbing me of both my...

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Applewatch Accessibility and Connect…

To quickly introduce myself, am Colin and I have Usher Syndrome type 3, the rarest of the Usher types.   I recently received a letter to collect a package from the...

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A Simple Tap or Touch can Mean so Mu…

Something I am often asked at my presentations is what is the best and most acceptable way to approach or get the attention of a deafblind person. My answer would be...

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Linx2, Earbuds, Earpods - Definitely…

I recently read a piece virtually comparing hearing aids with earBuds / EarPods and hearing aids with glasses! I read the piece several times and still thought it strange.  I'm 21...

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Me, Myself & My Guide Dog x 3 - …

Recently I was invited to appear at the Sense Awards at Kings Cross London.  I had been nominated by friends and colleagues from the Usher Syndrome and RP Community, I have...

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Josh Dealing with Usher Syndrome Typ…

Josh’ Blog for The Molly Watt Trust Hi, I’m Josh. I’m 22 years old and I have Usher Syndrome type 3. I was born with normal hearing and vision, unlike most...

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The Jekyll & Hyde of Usher Syndr…

I had never heard of Usher Syndrome until I worked with a girl who has it.   If I’m honest I saw her come in and out with her guide dog...

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Can Deafblind Access Wayfindr?

An audible App or program for the blind, accessible to deafblind, using hearing aids? There was a time when accessing such a thing would have been impossible and in my lifetime...

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"Access to Tweet, Tweet to Acce…

I was delighted to see that at last Facebook allows dynamic text for those of us who use iOS and rely on it. Finally those who had been isolated from family...

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A "Resounding" Success

When I wrote my Applewatch blog back in April this year, I had no idea of the interest it would generate, nor the amazing people or companies it would lead...

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Please, Please, Please Consider All …

I was prompted to write a blog on reading this quote:  “For people without disabilities,technology makes life easier.  For people with disabilities technology makes things possible” (IBM training manual 1991). That quote...

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Edinburgh Social Event 3 October 201…

Best Western Kings Manor Hotel, Edinburgh Saturday 3 October 2015 was a great success. It was brilliant to see old and new faces and a time to share some news and...

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Usher Syndrome - The Importance of A…

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...

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Usher Syndrome Awareness

Usher Awareness Day Sept 19th 2015 Dominique Sturz, Usher Forum Austria My name is Dominique and I am the mother of a 19 year old daughter with Usher Syndrome, she is a...

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Trials and Tribulations of an Usher …

As some of you may know, Jake our sixteen year old son was diagnosed with Ushers Type 2a 3 years ago, at the time Trev and I thought our world...

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Bradley Timepiece - Usher friendly timepiece - Molly Watt Trust

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