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Friday, 09 December 2016 18:57

Usher Syndrome / Christmas Challenges

Hello, my name is Josh Parker and I have Usher Syndrome type 3. Most of you reading this probably already have an idea what Usher Syndrome is, so I’ll keep the next bit short to get to the main point of this blog. I wrote a more in depth blog about my full diagnosis on this site roughly a year ago but here is just a quick summary.

I was diagnosed with Retinitis Pigmentosa when I was 5 years old and can never really remember being able to see ‘normally’. As a kid I always found it very difficult to see in the dark and always bumped into and tripped over things out of my field of vision. As I got older my eyesight slowly got worse to the point where it started to affect me in the day. My central vision was not an issue and I didn’t need to wear glasses. Instead it was the lack of peripheral (or side) vision that started to give me problems. Not seeing things that I wasn’t already looking at made getting around a little harder than it would be for someone with normal vision.

When I was 16 I started to lose my hearing and got hearing aids fitted at the age of 17. It has slowly been getting worse since then and I am now severely deaf. Although hearing loss is not a linear decline, by the way it’s going I will probably need a cochlear implant within the next 5-10 years, maybe even earlier. To put the icing on the cake, I had a retinal detachment back in 2012 which means I have practically no useful vision in my right eye anymore so I rely heavily on my left eye which can cause eye styes.

Now to the main point of the blog, how does Usher Syndrome affect me at Christmas? Well I guess I’ll start by saying that I love Christmas time. Getting together with your family and friends and having a great time is what makes it so special (and a few presents of course). As for my Usher Syndrome, the time of year doesn’t automatically change how much I can hear or see, but there are several factors that make Christmas, and winter in general, a harder time for me (I didn’t mean to make a rhyme there but it works).

The first difficulty that all of those with RP can relate to is short days and long nights. Longer nights mean more time in the dark which is exactly what causes the most problems. Although it’s not strictly related to Christmas as such, I have had a lot of trouble recently at university since all but one of my days finish after 5. By this time it is pitch black and I must walk from my lecture to the bus stop in order to get back to the city centre of Nottingham where I live. The trouble is, the area around the bus stop is not very well lit and there are lots of people that are scrambling to get on the bus. People come from all directions and often walk in front of me or stop without me seeing them. In the last month I must have bumped into roughly 20 people just near this one bus stop! I often get some nasty looks even though I’m extremely apologetic, especially from girls. I tend to forget about it until it comes to that time of day again, but I just have to go and accept that I am probably going to have to apologise a couple more times. As well as the problem at uni, it can sometimes be an even bigger issue when I’m out and about in the city. The general population (in my experience) do not tend to be quite as forgiving as most students and I’ve had a few situations where I’ve almost been punched because I’ve accidently walked into someone in the street.

I also spend a good portion of Christmas on nights out with friends and family. Being in dimly lit pubs and dark clubs has always been an issue no matter what time of the year it is. In this case though, I actually think the lead up to Christmas makes the majority of people more relaxed and forgiving so they don’t seem to mind as much if I bump into them or accidently spill their drink. The first thing I do is pull out my ‘sight impaired’ card from my wallet so they know I didn’t mean it and wasn’t just being a *insert rude word here*. I then offer to buy them another drink, which most refuse funnily enough. I assume they feel partially responsible for bumping into me and people often apologise to me instead. There have been occasions however where I have spilt drinks down people and they have had to be held back by their friends whilst I try and explain my condition.

Although most of my Christmas difficulties come from my eyesight, there is one major thing that affects my hearing during winter, colds. I’m not the sort of person that gets ill all of the time and I only really catch them during the winter when they are most prominent. As I write this blog I am still recovering from a cold which caused my hearing to become extremely difficult. Many people suffer from slight hearing loss due to a cold as your Eustachian tubes can get blocked and infected. This causes a negative pressure in your middle ear which means your ear drum cannot vibrate properly. This effect is amplified for hearing aid users and here’s why. For a person without hearing aids, even if the ear drum has negative pressure acting on it from the inner ear a sound can still cause it to vibrate with relative ease due to there being a nice big hole on the other side (aka your ear hole). For a person with hearing aids this hole is plugged up nice and tightly which causes a positive pressure on the other side of the ear drum. This doesn’t allow it to vibrate very well at all which makes it much more difficult to hear. I guess a good analogy is when you leave the back door open. It is much easier to slam a door inside due to the air being able to escape out the back than it would be if the back door was closed. Even better, if you didn’t have a cold it would be like slamming a door when you have the windows and doors open, they slam themselves!

I’m sure there are a few other little things that can cause me a bit more trouble during the Christmas period but they definitely do not outweigh the good times I have with my family and friends!

13th November, the start of my adventure to the other side of the world. 

It had been just two days since Mum and I had come off a plane from San Fransisco (that's another blog!) Already we were heading off to Singapore before Perth, Australia where I was a keynote speaker. 

I've never flown with Singapore Airlines, I had only heard good things about this airline, so I was feeling quite relaxed. 

I was lucky enough to be escorted to the lounge at Terminal 2, Heathrow (all about who you know right!?) after chilling in comfortable chairs and sipping cocktails, we were finally called to board. Mum and I grabbed our hand luggage, I grabbed my cane and off we went, I felt excited at this point, I think Mum did too albeit she had repeatedly expressed her dread for the 12 hour flight to Singapore! 

Approaching the plane we were greeted by smiling faces, and the lady hostesses all dressed in a kimonos even notified me when to step on to the aircraft and even took my elbow, 'Good start,' I thought to myself. 

Having being seated, I scanned around me to get familiar with the surroundings that would be home the next 12 hours. 

We had bulkhead seats, in premium economy so i had plenty of room and being the clumsy person I am these days I felt more comfortable even though I had been seated beside a couple with a young baby - “Don’t lean left Molly” I told myself, I ceraintly wouldn't have wanted to disturb, wake, knock or touch this little one!  There was seating for two people and I think it would have been more appropriate for me and my mum to avoid accidents!

I soon noticed the TV screens were positioned on the wall in front, rather than folded and released from under your seats like with BA or Virgin, this was the next negative, yes, great to have extra personal space foot however the screens were of a distance that I could not see them very well at all, very blurred, never mind I thought, hopefully I will sleep anyway, best thing for me to do on a night flight as the cabin is so dark, a real challenge being deafblind and night blind.

Before take off I waited patiently for somebody from the cabin crew to approach to talk me through the safety instructions, give me clear directions to toilets and emergency exits.  To run through the entertainment system and of course to show me both where the help button was and the light button but nobody came. I felt anxious. 

This was a night flight, meaning the lights were out shortly after we took off, and already I struggled navigating the controls for the screen let alone the chair for light or to even locate where the toilets were. 'I could never do this without help' I thought. How sad did that make me feel? At 22, I don't want to feel like I'm reliant on another and even with company safety of each and every passenger is with the airline.

I am well travelled and my experiences on several other airlines are to board those needing extra time first, to then speak with me on a one to one and to provide information about safety, instructions on where everything is located in the aircraft and to check in with me from time to time.  Several airlines would also provide items of safety equipment for me to touch so I’m as aware as I can be. 

on board an aircraft is a very difficult environment I struggle to hear as well as see. 

When the safety instructions occurred on screen, I noticed when looking up close there was a person in the corner of the screen signing the instructions, Of course this was not accessible to me with my lack of vision, and scanning around the screen I could make out what looked like subtitles but again, inaccessible to myself. 

Having taken off and in the sky, the lights were considerably dim (I guess as it was 10:30pm at this point,) however this light I am virtually useless in, let alone in the dark. I was keen to just get my hearing aids out and try to sleep the hours away... As soon as I'd eaten, I then felt around for buttons on my seat to try and push the chair back in a more comfortable position to sleep. The buttons from I could see all had red lights on them... they all looked exactly the same to me. I tried asking Mum, and Mum was stuck helping me and struggled because of her own bulky chair being in the way. Though premium economy is considerably spacious, the actual seats and arm rests are quite compact making it hard for me or anyone else to lean across and help me. We eventually found the 'call,' button and got someone to adjust the chair for me, at this point you could say I was in a bad mood... 'Just sleep Molly,' I thought. I felt totally useless and extremely restricted when all I wanted to do was sleep. 

Having eventually caught a few hours sleep, when I woke up it was pitch black, I was totally blind. I couldn't see Mum, I couldn't see my hands, nothing. Not to mention my hearing aids were out. Unfortunately I was suffering with a sore throats and ear ache to make matters worse and more uncomfortable. Next door to me were a couple with a toddler, this couple got a lot of assistance and even got upgraded as their TVs didn't work... 'At least you could see enough to distinguish that,' I thought. I couldn't tell you if my TV worked or not, it was simply inaccessible! I missed out on entertainment on a 12 hour flight. I closed my eyes a few more times to in hope time would pass. Eventually I woke up and it was lighter, it was breakfast time. 

Every time the air hostess approached and gave the options of food and drink, Mum had to repeat more than once before I understood/ heard. I was really feeling quite dependent at this point and fed up. Despite continuously struggling the air steward did not offer further assistance. 

I even had to ask my Mum where the toilets and exits were, everybody else got the instructions loud and clear at the start, and I did not even know where the toilets or exits were... This is absolutely unacceptable. 

I asked my Mum not to speak to the cabin crew as firstly she is not my carer but my Mum, secondly, she shouldn't have to speak to them and thirdly, I did not want a fuss, simply access to everything everybody else has!

My Mum was very cross as she had advised of my condition on booking, at the airport and it was pretty clear, having entered the plane with my cane in hand the crew knew I had a disability - even with all that I was ignored.

The male staff member my Mum approached discreetly made her very angry, firstly stating ‘We forgot’ then suggesting in fact she should be responsible for me on board the flight. Completely unacceptable response.

Well yes, my Mum is my Mum, she is not trained in aircraft safety and accept that she was with me is no more responsible for me than any other passenger on the aircraft.

I am 22 years old and deafblind I would appreciate being treated like an adult and an individual and for one to just offer the reassurance and assistance where need be, especially on a 12 hour night flight. What if I needed the toilet and my Mum was asleep? What if my Mum was in the toilet and I needed help?  It is not my mother’s responsibility. 

Every passenger's safety on a plane is the responsibility of the airline, every flight begins with a safety announcement yet I was not considered, no thought was given at all.

The crew were very concerned about the passengers beside me having a broken TV, so much so they upgraded them, I couldn't see to know if my TV worked!

I was 'forgotten.' 

The two adults to my left with the toddler received a lot of assistance and his parents were right there and fully responsible for him.  Mighty special I felt! 

If an elderly couple appeared on the plane, air crew would approach and speak with the individually or in any case just say, 'let us know if you need us,' they would not say 'you've got each other, help yourselves.' Contextually, this is the same as them placing full responsibility on my Mum. 

My Mum is not trained in aircraft safety. Quite frankly she's a passenger on a plane also, and shouldn't have look after her 22 year old daughter for 12 hours and nor do I want her to.

After making a complaint to the ‘rude steward another man came and spoke to my Mum and was apologetic, however, the damage was already done.

I could not wait to leave the aircraft and when I did I was confronted with a woman who was there to ‘assist’ she advised me I needed to wait for her and other passengers needing assistance.  I advised i wants to stretch my legs and I am glad she did as she was intending to take me through immigration which would have been completely unnecessary as I had a connecting flight again with Singapore Airlines so she should have known that.

I dreaded the next flight after such poor service, however, it would seem word had gotten across about my needs and this time my Mum had her say right away, knowing how upset I was from the previous flight. 

This flight was the shorter of the two flights and thankfully my needs were considered.

I am not looking forward to flying with Singapore Airlines back to the UK, I believe there needs to be more disability awareness training particularly for those of us with hidden disabilities and sensory impairment on the whole it was not a pleasant experience.

Wednesday, 13 July 2016 15:11

Being an Usher Mum

Being an Ushers Mum. 

In 2011 I went for routine eye appointment and after a small discussion, the optician wanted to refer me for some tests. 

I immediately had an in house field vision test. Let's just say we know how that went !!

I was a little naughty and opened up the referral letter the optician wrote to my GP. 

I noticed the words Retinitis Pigmentosa. 

Never heard of it. I was a veterinary nurse so I understood quite a wide range of medical terms. 

So I did what most of us do. I went on good old Google. 

Maybe not the best of ideas as I was at a wedding that afternoon. It was a good job I had waterproof mascara on. 

I was shocked and then in denial. There was no way I had RP. Even though the more I read, the more it was like I was reading about my life. 

It felt like torture waiting for the tests, having those gruelling tests done and then waiting for the results. 

During that time I accepted what the outcome was. I knew deep down I had RP. Family and friends would tell me not to think the worst and that it was probably something less severe. 

If I'm honest I think I did the right thing preparing myself for the worst, as when I was diagnosed I felt more together than many people. Well on the outside anyway. 

Truthfully, I was devastated. I had 2 little girls, I had had my driving license taken away and my physically demanding job was in jeopardy. 

My main worry was my children.

Would I hurt them somehow?

Would I see them grow up?

Get married?

See my grandchildren?

I think I drive myself a bit insane for a while. But finally I came to realise that nothing in life is guaranteed. 

I could get hit by a bus tomorrow, or fall sick and pass away. Yes I know it sounds morbid but if the worst was to happen and I fully lost my sight, then at least I'd be physically there. Which is more than some get. 

After several months I stumbled upon an article about RP and there was a link to Ushers Syndrome. So I read up. Again it was like I was reading about my life. 

As a young girl, after a routine hearing screen it was discovered I was completely deaf at a certain frequency with mild loss at all levels. 

So ushers called out. 

I spoke to my consultant and he said that I shouldn't keep reading up. That ushers was extremely rare and unlikely I had it. 

I wasn't happy with his response so I took it upon myself to contact a genealogist. 

She was amazing. She listened to my reasons and she had researched ushers. It was decided to do some blood work. I had my blood tested for 100+ ushers and RP genes. The test I had had only been available for about 18 months so it was fascinating to know the results. 

After many months it was confirmed Ushers Type 2A. 

Finally I was getting somewhere. 

I went back to my consultant who didn't really seem bothered with the test results. He basically said "well yes you have it, there's nothing that can be done. We will check on you yearly to monitor the condition"

That was it. 

My animals at work got better treatment. 

I wasn't going to let this go. 

I'd heard of Moorfields off an RP/Ushers group on Facebook. I emailed them and asked what the protocol was to get an appointment. 

I went to my GP who applied to the local PCT for funding to send me. 

Within a couple of months id got an appointment and was seen. 

The tests again were very uncomfortable and knocked me about for a few days afterwards. But the work they do there is amazing. 

They had all my notes from my local hospital and the genealogist. But they also did their own investigations. 

They noticed I also had macular edema. I'm so thankful that this was picked up. As if not my remaining eyesight could of been severely compromised. 

So now, just over 4 years later I've gone from being registered Visually Impaired to Severely sight impaired/blind. 

I have just 5 degrees of vision left and am still taking drops for the edema.  

The reason I've wrote this is I wanted to talk to you about RP/ Ushers and being a mum. 

I had my first 2 children before I was diagnosed and I have had 1 other since. 

I regularly see people on the groups ask the question of children. 

Obviously there are many factors to consider. 

Unless my husband was a carrier, my children could only ever be carriers, they wouldn't get RP. I have recessive RP. My parents are carriers of the faulty gene and I got both faults. 

But for some, it's a much higher risk as they have dominant genes. This can be where several family members have RP. 

I've been asked how I cope being a VI parent. 

It's not easy. There are times when I've got upset as I've knocked a child over or trodden on and broke a toy. 

But as time went on, we established a certain way of life. My older girls used to guide me from the car to the house at night when dark. They would know to move toys to the outskirts of the room so I wouldn't trip over them. 

This obviously didn't happen overnight but as they got older, they did things automatically. 

It also helps that I have an amazing support network around me. Without my husband and mum, I would find things a lot more difficult. 

Would I of still had children after diagnosis?

Yes, I did. I had my 3rd daughter almost 3 years after diagnosis. 

Would I of had children if I had dominant RP?

Truthfully, I'm not sure. I'm not in a position to answer it as I don't have that form. I think things may be harder due to both parent and child being VI. But with a routine and structure I know it can be achieved. 

But from my experience, there is a lot more things out there that's far worse than RP. I have met some amazing people who have RP and now I find it more of a blessing than a curse. 

I believe my children will become better people having a mum with disabilities. 

At first I felt a burden to them. But now I believe that due to them helping me and assisting with things, it will make them appreciate the smaller things in life that many take for granted. I hope it makes them grounded and give them morals and values in life. 

I think I'm a better mum since being diagnosed. I don't like to miss anything in my children's lives. I like to document everything and take many pictures. 

We do a great deal of things as a family and make many memories so that if one day a cure isn't found and I lose my sigh I have those memories to cherish forever. 

Saturday, 18 June 2016 15:17

Unacceptable Audiology

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 and phone calls with various health professions, social workers, charity organisations and support workers. This would be exhausting for anyone, however, the fact that Usher Syndrome means communication and accessing information is particularly challenging and can be made almost impossible without due care and attention given to specific accessibility needs.
I am very open about having Usher Syndrome. I will patiently explain that I have it, what it is, how it affects me and what assistance I require constantly. I request that these details are highlighted on all notes held by each organisations. 
Therefore you would hope that the word Deafblind - patient/client/service user/customer is both hearing and sight impaired, is a limited lipreader, prefers plain text, font size 22 ariel, wears hearing aids/uses a long cane and is a guide dog owner, requires emails (email address provided) or texts (mobile number provided), would ensure my accessibility needs are met. 
Unfortunately I can testify that sadly it does not. 
I recently received a letter from my local audiology department. The letter came in "normal" font (10/12) It was difficult for me to read. I had to ask my husband to read it fully for me!
It was a standard letter stating that their hearing reviews were now being carried out over the telephone, I would need to ring telephone number xxx on such a date at such a time for my review. If I could not do  this I was to ring telephone number xxxx to let them know, what is more if I didn't ring at all they would assume I didn't not want a hearing review! 
I was at a loss, speechless.  My immediate response was incredulity that an Audiology department was using an assessment method that relied on good hearing, followed by frustration.
I don't even have a landline installed at home - there's no point - I can't hear it ring, and I can't hold a conversation on it because I am deaf. I do not have a Typetalk screenphone or minicom because I am blind - I can't read the words. How would I be able to do this assessment at all?
Then I was angry, FURIOUS.
They do not seem to know or care what impact these type of letters have, how incredibly frustrating to have inaccessibility so often and not just from an NHS Hospital but an audiology department that should know better.  That their inexcusable inaccessible correspondence should leave me having to find an alternate way of accessing not just the correspondence but this absolutley ridiculous idea of assessing my hearing.
The letter and process used was about their convenience, not mine - totally forgetting the purpose of their role.
They are supposed offer me a service, not frustrate me.
I do need a hearing review, but face to face and driven by me - there are questions I need to ask. My audiology equipment needs maintaining. I need to maximise my hearing potential and here yet another barrier to accessing my essential services.
My anger comes easily because it is not a one off occurrence. It happens across all services consistently.
Last year my GP would only speak to me by telephone consultation. At the time of the appointed telephone consultation I travelled to the surgery so she could speak to me face to face and I could lipread her with my limited vision. She refused to open her door despite me being sat in the other side of the door in her waiting room. She instead telephoned my husband who was 11miles away to discuss my health concern. 
I changed my GP having felt utter disbelief and anger at being denied my accessibility requirements and being treated like a second class citizen.
I don't need this stress, my life is hard enough.
Every day is a mountain to climb,consideration, understanding and a helping hand readily given would make my life so much easier to bear.  
The sad thing is technology is available and can help so much.  So we now often have the tools but sadly not the helpful attitude to go with them!
Saturday, 18 June 2016 13:34

Life is a Rollercoaster

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 family as along with looking after two young and active sons there was an array of appointments to deal with and rarely enough time in each day to get everything done.  

Thankfully back then I had a husband with a flexible job and a very understanding manager, parents who were very hands on and an amazing support system in my area.

There were a few fights for support in school but nothing that wasn’t ironed out quickly.

Molly was born deaf, she knew no different and was a happy child who just wanted to be able to communicate she made parenting her an enjoyable challenge.

Each little achievement was rewarded with a smile that made all the hard work worth every single moment.

Deafness was not a misunderstood condition, there were audiologists, teachers of the deaf, social workers for the deaf, deaf clubs and events and all locally.

For me it was all about putting in the time, listening to my child, to the experts, lots of patience, oodles of encouragement and watching my little girl thrive and thrive she did.

As the rollercoaster went for us it was like a child’s ride deafness was ok, it wasn't frightening, there were lots of deaf children, it was doable, time, support, help and belief and we reached the end of that ride without tears.

A confident youngster achieving that of her hearing peers, great job.

The killer blow for me as a parent was the Usher Syndrome diagnosis, my deaf child would become blind, possibly the most frightening thought of all.  We were all plunged into darkness, literally it was more like the ‘haunted house’ ride.

Few had heard of Usher Syndrome and if they had had not met anybody with it let alone worked with a child with it.  There were no others with the condition in our area, the support required now was very specialist and it was not available.

There was panic, there was a gaping hole in support services and this hole would need to be filled by specialists direct from Sense.

Nobody was trained to work with Molly, more departments became involved all sympathetic often overly so but their way of supporting a young person very individual / unique in her needs was sadly very makeshift and dare I say trial and error.

It was the most stressful time of my life.

There were now more appointments than ever and very few local.  Lots of travelling a very unhappy and confused child and nowhere to turn.

I remember being very thankful of a visit from a lovely lady from Sense who would work with Molly. Molly’s support team locally and put together a specialist report incorporating her needs.

One person who really could make a difference, a lady who made a huge difference in our lives, sadly Molly would only see her once every 6 weeks and yet her whole education relied upon her input.  I am very thankful of that support however it wasn't really enough to educate not Just Molly but everybody that worked with her.

It didn't feel like it was enough and so here my tenaciousness took a hold of me, it was not ok to just make do, it was not ok to feel isolated by a condition, it was not ok that the many professionals around us seemed to more feel sorry for Molly than support her and enable her, it was not ok to just do nothing.

I set about learning as much about Usher Syndrome as I could, each appointment be it audiology or ophthalmology I would question, question, question, research online.  I made myself known to Sense, I began networking to find others living with, working with or with knowledge of Usher Syndrome, I attended conferences.  I became the ultimate pain in the proverbials - I was a parent on a mission and my child would succeed.

As it turns out I was very wise to do all of those things, along with working and nurturing my other children.  I was prepared for the oncoming battles, every single one should be completely unnecessary if people are more aware and finally it would appear there is a way for this to happen.

I have fought with the education system, with the DWP, with Student Loans, with Occupational Therapists, with ATOS and why?

Quite simply they expect my daughter to be something she is not.  They assume she is incapable of very much, they do not think outside of the box.

People in these departments are decision makers, they are making decisions that can change the lives of vulnerable individuals and yet they do not know enough about the condition and we cannot expect them to know everything about everything but they do need to listen to the experts, the person they are often assessing and to consider how and why a person functions the way they do.

When I tell you one ATOS doctor that assessed my daughter told us he had ‘googled’ Usher Syndrome the night before you will understand how unacceptable the system really can be and it is not good enough.

For those who have met my daughter, heard her speak, seen her do things, her passion about making a difference need to remember a few very important facts.

The only reason she can function the way she does is with the right support, the right technology, the right equipment an environment acceptable to somebody who is deafblind and a huge amount of effort.

My whole reason of putting this blog together is not really to talk about my life history but to indicate how hard things have been made over the years and how not everybody has the energy to fight these battles and in effect are let down by the system, however, after visiting Maneesh Juneja’s VR Workshop in London I see the way forward is right there.

Already there is VR of dementia so lets have VR of Usher Syndrome it would make the lives of all from patient to professional so much easier.

VR would bring empathy and understanding to those working in healthcare to the decision makers and to families all of whom would then be able to make more informed decisions and provide relevant support and assistance and an end to the never ending battles so many face.

Often described as tenacious and on occasion a ‘rottweiler' by Molly, the truth is all I want is the best for my children just like any other parent and so like everybody else I will continue to ride that rollercoaster until I can safely get off!

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 Usher Syndrome type 3.

I was absolutely overwhelmed that people thought enough of me to nominate me . 

As time went by I received an email from Sense advising I had been shortlisted in the category for Deafblind Person of the Year, I was in absolute shock.

I then spoke to my partner and friend, both like myself have guide dogs.

In typical style we would attend the awards and tackle this head on.

Being Scottish and living in Scotland, we would travel down and tackle London and all it could throw at us, head on.

It was decided Johnny and I would fly down together, with our guide dogs Jason and Bronte and my partner decided she would love to attend the Guide Dog Awards two days later so she would follow us down by train with her guide dog Eva.

We set about getting tickets to enable us to attend the event, priced accommodation and found a bargain deal, however, it was about 6 miles from where we really needed to be but between us we have great communication skills, we are all oral. 

We initially tried to book trains but it was far too expensive as we would be travelling from Glasgow to London surprisingly it was cheaper flying with Ryanair, the journey by plane was just an hour . 

We did our homework checked all was okay travelling with our guide dogs first and booked assistance on the flight. 

Our journey began on the windiest Sunday night in Scotland for many a year with Jason my guide dog and I making our way by train to Glasgow to meet Johnny who has no sight perception at all and his guide dog Bronte.

Lyn and her guide dog Eva would travel down to London by train to join us on the Tuesday.

Johnny and I and our guide dogs set off, had a bite to eat on the way and got the airport bus to the airport we were booked in at the holiday inn express . 

We checked in dropped our luggage and went to the airport to check we had booked in correctly and we had.

At the hotel we were up at 6 and had breakfast, it was self service not ideal, but the staff insisted we sat down while they waited on us, they were very impressive.

They then escorted us across to the airport.  This was brilliant as you all know sometimes it's difficult to get assistance or even accept assistance.

We then checked in with Ryanair they who were very professional and after check in escorted us through customs and made sure we were fine, checked our boarding passes  and then boarded us first, we felt like royalty. 

Neither of the guide dogs had flown before and both behaved impeccably.

We were collected at the the other end by assistance, fair to say we were very well looked after. 

We actually bought bus tickets on the flight and were surprised that the airport staff escorted us to First National Coaches.  Once again we were greeted with a smile at the bus depot she helped us so much she got us our Oyster Cards and showed us how to use them but also escorted us two streets away to get another bus.

Once on the bus the driver was notified of our predicament and he told us he would tell us where to get off even though it was  a ‘Talking Bus.’ 

This is a huge thing at the moment, I have been involved with the guide dogs campaign to make this happen, this really is a must it takes the stress of travelling away even for sighted individuals. 

I had also researched an app called Tube Tamer and downloaded it onto my iphone, it took us exactly where we wanted to go in London, advised of details of every train, tube, bus and how on foot we could navigate the City. 

As we got off the bus I checked the app, pressed the map and it directed us to the Ibis Hotel, Styles Custom House . Sure enough we walked round the corner and there it was, fantastic app.

We proceeded to check in, the staff, as usual were in awe of the dogs.  

We got up to the room and laughed how on earth did we manage to get here? 

All I know is we did it and it was amazing. 

Next day Johnny, me and our guide dogs had to find our way to Kings Cross and to the Sense Awards.

After a great breakfast, made easy by the amazing hotel staff I checked my app Tube Tamer, fortunately I have enough sight at the moment to access this app, Johnny would have struggled as he has no sight.

At the tube station the Transport for London staff could not do enough to help us get to where we needed to be with our guide dogs and this was the same every time we used the transport system.

Without a doubt I would recommend Transport for London for their outstanding assistance.

After a couple of changes and a short walk we reached our destination.

We had made it, one completely blind man, one deafblind man and our guide dogs had not only got from Scotland to London but also from one side of London to the other, quite an achievement in itself.

We were shown to our seats.  There was a buffet lunch, not ideal for us in this environment but thankfully there was assistance so we were able to stay in our seats.

After lunch were the awards, people like myself nominated and shortlisted for various achievements.

The last of the awards was the one I had been nominated for ‘Sense’s Deafblind Person of the Year’ each nominee had achieved great things this past year.

I felt pride at being nominated, at getting from Scotland to London, from hotel to venue.

I was a runner up for the Sense Award that day, however, I felt like a winner just by being there, me, myself, my guide dog and my best friend who just happens to be blind too!

Colin Hetherington

As Colin said we made it and it was none stop laughing. 

The rest of the day we familiarised ourselves with the hotel and took a walk around the local area finding shops along the way to get our provisions for the night.

It was like an adventure, a new environment with new surroundings for us and the dogs all part of the adventure was successfully finding a Tesco extra!

That evening, after we had a shower and relaxed for a little, we went downstairs for a lovely meal which concluded our day. 

We went to bed early so we could be up bright and early for the interesting day ahead of us.

After an enjoyable sleep and a substantial breakfast we were ready to face the day ahead. 

This day kicked off with a trip to a local park which we found on our travels allowing the dogs to have a little run and play. This was great as it gave the dogs a little down time for all their hard in this big bright bold new City, and with that done off we went on our next adventure.

On and off trains and tubes always with assistance which we extremely appreciated and are truly grateful for making our journey that little easier. 

A massive shout out to Transport for London Staff who were a great help.

We finally reached our destination 'Kings Cross' to meet our dear friend Lyn. 

As we were a tad early we thought a little wonder would be a good idea, so we, myself, Colin, Bronte and Jason toured the streets of London.  We found ourselves at 10 Downing Street, which was truly astonishing, standing outside somewhere so well known and a place you'd see on your television. 

Our journey also took us to Big Ben that was breathtaking and Trafalgar Square which is lovely at this time of year all decorated up for The festivities. Then our travels came to a stop.... just for now as we went to meet Lyn. 

Both of our dogs started to get excited while we were waiting for Lyn and that's how we knew our friend had arrived. 

It is something I'll never forget.  Being in a new big City with your two best friends it's honestly the best feeling ever. 

The three musketeers headed back to the hotel using the great transport system once again.

We had a pretty chilled out night dinner and a few drinks as we were all quite tired after the busy day and Lyn with her travelling.

Waking up the next day with a migraine and dry mouth I regret those extra drinks I had the night before but nothing could solve it like a nice warm shower and a big plate of food to set me up for the day ahead. 

This was an easy relaxed morning as we were all still delicate from the night before. We got all suited and booted for the big occasion 'The Annual Guide Dog Awards' which was held in Hilton Park Lane  which was a very high end hotel. 

We arrived at the venue in plenty of time and on arrival we were greeted with champagne and were assigned our seats. As we proceeded to our seats we walked along a red carpet passing through an area the press were using, we felt like royalty which is quite funny as we were in the same city that the Royal family live in.

 We had a 3 course meal which was lovely, but don't ask me to remember what we ate, let alone spell it!

The evening was a blast we had great fun watching the awards take place and watching the auctions. An immense amount of money was raised. If we had to take a trip to the little boys room there was always someone on hand to accompany us there. The night came to an end and we had fab help getting from the event to the train station. 

We had met some great people, experienced great things and had great fun.

Another day under the belt. 

One more day ahead in our story which Lyn will take up telling.

Johnny Garvie

As Colin and Johnny said we have had a great experience so far but the day I had been looking forward to had arrived. Thursday was TOURISTEE DAY. 

I was so excited. We got up and had breakfast early so we could make the most of the day. Heading to the subway about nine thirty. 

The service we had become so used to in the tube and trains continued, amazing system and amazing staff, Transport for London. 

We got off at Westminster Station. 

I needed to go to the ladies, Johnny was standing outside waiting for me and there that moment he heard Big Ben chime 10 o’clock. WOW, he couldn't see it but he knew it was right next to him! 

We then headed to No.10 Downing Street which was completely different looking to me from the tv.

I didn't realise there were gates at the side side. We took some photos and then walked on. 

We headed to Nelsons Column and Trafalgar Square. This was where I so wanted to go to get a photo at the Christmas tree. I must admit the tree was probably a bit disappointing to me but loved the fountain just wished I had a Scotland scarf and that I could go in for a swim - haha. 

We then walked up The Mall where the Royals all come down in their finery. It was such a thrill just to think we were in the same place. 

We arrived at Buckingham Palace as a big posh car left with police escort. 

For a second I thought they had heard the ‘Three Blind Mice’ were in town!  

We walked through the park giving the dogs a chance to relax a bit. We did have a wee bit of disorientation in here and had to stop a few people for direction. 

I will never listen to another person who says Londoners have no time to stop for you. Everyone stopped helped and chatted. We met so many amazing people who went out of their way for us. Instead of only giving direction they would just take us. Well over our expectation. 

Thank you London folk.

This is when Colin introduced me to Jane Watt who we met for lunch. 

We went to Harvey Nics. 

Johnny and I took our metal diet cola bottles home and took a photo of my lunch, sad but true. 

It was such a lovely time and I learnt so much more about the The Molly Watt Trust Charity and the hard work they are putting in to make a differenced to those with Usher Syndrome.

Thanks for a lovely lunch Jane. 

We wandered about for ages trying to find grass for the dogs after that. Not a lot found that area but with Jane’s help we got somewhere and headed to shop at HARRODS. 

Jane guided us round safely and we came out with 3 HARRODS carrier bags from one of the managers. Such a lovely experience although the dogs were on tip toes making sure we knocked nothing over. 

We left there to go back to the hotel getting the same attention from the staff at London transport. 

We visited the local shops for nibbles for the room and had a quiet night with tea and pot noodles as we were all totally shattered. 

Friday came and it was time to pack and get ready for home. 

I was excited as today would be the first time Eva would be on a plane. 

Knowing how well Bronte and Jason got on the first time helped me stay calm. 

We took time with our breakfast and said cheerio to all the lovely staff who had run after us all week. We checked out and headed to Stanstead. 

We were definitely more confident on the tubes and managed a couple of parts on our own but got the help we needed. 

Colin’s app Tube Tamer was an amazing help to us the whole week. 

We got on the bus to Stanstead we had well and truly left.  On arriving at the airport we asked a workman where Ryanair was and he kept pointing and trying to tell us where to go! Thankfully his workmate came along and started laughing and literally took us where we needed to go.  I bet he gave his mate some ribbing!

The staff printed our boarding passes off for us after which we went for something to eat. 

When going through  

security we all got frisked and they emptied my suitcase I was mortified all my dirty underwear!

However got through and were taken to the plane first. We had a very good flight home and Eva slept most of the way. We were treated well in Glasgow Airport too. The staff were helpful took us from the plane right through to the bus to go to Central Station. 

We were back where we began, our adventure was over but we were back with more confidence in our abilities and our amazing Guide Dogs. 

Thanks to everyone who helped us. 

I was born with Usher Syndrome in 1960, I'm born Deafblind but it wasn't properly diagnosed until I was 28.

I had hearing aids from age 9, I was clumsy, I was going blind even then and I was told I was slow as I didn't speak very much and I was bullied.

Growing up was very difficult, life was hard from the beginning.

I have never written a blog before but I'm very upset with the media reporting wrongly about usher syndrome making it sound life is fun and easy.

I have fought all my life to explain what Usher Syndrome is  for some journalists to get it completely wrong.

I am deaf, I wore hearing aids to access sound for 30 years and as a result I can speak.

My hearing got worse with age and 5 years ago I was lucky to get a cochlear implants.

I am not miraculously cured of deafness I am still deaf I am just able to access sound.

My blindness was with me the day I was born but progressed slowly and I have been registered partially sighted for many years.

Dual sensory loss is not fun, it is hard to live life always needing to explain personal needs, hard enough without the press not researching the condition, getting wrong and making it sound like everybody with usher syndrome is having fun being Deafblind - it is not fun and I find reading nonsense or being told how I should be based on the nonsense these people write, upsetting and demeaning.

If anybody is interested the only thing on my wish list is for people to understand the condition..

Sorry to vent my frustration  

Thursday, 23 April 2015 20:00

See Me, Hear Me

The sun would shine we'd go out to play

Ride our bikes or play on swings

We really could do wonderful things

Run and play, just play all day

Now when the sun comes out to play

I must hide my eyes away

The glare is painful it makes my eyes weep

I hide behind dark glasses as if to sleep

My eyes are open but little can I see

Usher Syndrome, Deafblind is me

Hearing is a challenge but hearing aids fab

Seeing more difficult without Unis my lab

Life is different, challenging and tough

It's all about awareness, there isn't enough

My aim is to educate to make people aware

My Usher Syndrome challenges I'm going to share

If you are interested and would like me to inspire

Invite me to talk, go on I dare you to enquire

Saturday, 28 February 2015 00:00

Success at the IBSA World Judo Championship

As most of you will be aware I am a judo player and represent Great Britain. I also have type 2 Ushers!

Last weekend (21-22 Feb) I attended the IBSA World Judo Championships in Eger, Hungary, along with 5 team mates.

The competition is a qualifying event for Rio so tensions were high! In my first round I drew the current Paralympic champion Masaki Kento – Japan (who makes me look tiny!). Unfortunately I was unable to conquer him and he threw me in a rather powerful throw. As I lost the first round I dropped into the repercharge which means I then had to win my next 2 fights to win a bronze medal.

I dominated my next fight against Baurxhan Begaidarov from Kazakstan , defeating him in 40 seconds which meant I moved onto the next round to face the semi-finalist Aleksander Parasiuk from Russia. Aleksander is already sitting nicely on the qualification ladder so he did not come across as very happy when I defeated him by ippon in 20 seconds! At this point my coach got a little excited as this is my first really big International win and will catapult me from 11th in the World rankings, to probably top 6 which is a very comfortable place to be! 

So all in all I was very pleased with this result. Out of the 4 medallists, the other 3 all competed in London 2012, so I am definitely up there!!

The following day I was entered into the Junior World Championships (I am 18). GB have a strong history in this event so I was determined to carry this on. Unfortunately for me 3 of my opponents refused to fight me! (Chuckle) so I obtained automatic wins from them and defeated Abderrahim Mehdaoui from France to take the Gold and the World Championship title. Top Junior in the World – think I can handle that!

Having the National Anthem played for me was quite emotive! Let’s hope I hear it again soon!

Following the 2 competitions we had a 3 day training camp so I got to spend a lot of time throwing people about – I made sure I got a few throws in on the big Japanese fella that beat me! Can’t let him think I’m a wimp!! J


I’m onto Brazil next in 2 weeks’ time followed by Germany in April and Seoul, Korea in May! Busy boy!

Please follow me on twitter – jackhodgsonjudo as I strive to qualify for the Paralympics next year!


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