A A A Accessibility A A A A
Thursday, 21 September 2017 13:58

My "Blind Date with Ushers

On Saturday 16 September 2017, Usher Syndrome Awareness Day,  I was very humbled to join in on an accessibility workshop hosted by Molly Watt from Molly Watt Trust and Chris Bush from SIGMA, held at the Thames Riviera Hotel in Maidenhead Berkshire. It really was a ‘blind date’ for me as I had only recently met Molly and prior to meeting her I had no idea what Usher Syndrome was. Usher Syndrome is very much an invisible condition, I was pleasantly surprised by a room filled with over 30 people that had travelled from as far as Scotland and Leeds all making their introductions and it really wasn’t until I saw the flurry of furry hounds with their High Vis harnesses on that I would have noticed anything different about this group of guests at the hotel.

On meeting Molly for the first time in Starbucks, on the surface, there wasn’t anything about her that alerted me to a condition of almost total blindness and deafness, until I spotted ‘Bella - the wonder dog’ sitting on the floor beside her wearing the High Vis paraphernalia. Usher Syndrome is a condition which affects both hearing and vision with the main symptoms being hearing loss and an eye disorder called retinitis pigmentosa or RP and as a vibrant and energetic mainstream millennial, Molly has not allowed her condition to stifle her modern day way of life. Although she is able to communicate using sign language Molly prefers to converse orally, (and boy can she talk for England) as well as maintain an active and strong presence across social media and on top of all that a whizz when it comes to state of the art digital technology - she is even able to maintain her own Digital Hearing Aids from an App on her iPhone reducing those nightmarish visits to the audiologist. A truly model citizen for the connected home industry. 

Being an active millennial, Molly has also ensured that (aside from fashion) she is up to date with modern technology and has even managed to find her way into some high profile manufacturers who are developing state of the art technology including some for the Deafblind community. I guess it’s not without doubt that together with her determination Molly has been fortunate to have been selected as a model ‘guinea pig’ for some of this really cool and expensive kit, including #Applewatch, #iPhone, #ReSound Digital Hearing Aids #LiNX3D, #Ring Door Bell, #Philips Hue Lighting etc.  

Molly had wanted to be a primary school, but was let down by the system, her university failing to provide access to her course, she therefore made the decision to move into the field of accessibility and enablement.  

Molly is comfortable standing in the front of a room and captivating her audience, not to mention she has a great sense of humour too. This confidence and after writing a blog about how the applewatch transformed her life that went viral, also afforded her the opportunity of being invited to Apple HQ in Cupertino twice to provide her insight into the world of the deafblind and the needs of those living with Usher Syndrome along with how she utilises her  #AppleWatch to communicate and navigate safely through society on a daily basis as well as in her home & family life - mum keeps a close ‘watch’ over her through technology.  

Over the last decade, technology, smartphones, tablets and apps in particular have in many ways changed the way people live their lives on a daily basis and even made the world a smaller place. For many though, the arrival of this emerging technology can be very daunting, that is until you understand the benefits of how to extract the best use out of it to your advantage, regardless of abilities, everyone uses their devices in a different and personal manner. Who better to demonstrate some key advantages of these products, highlighting the important things as well as some useful tips too, than Molly herself. Impressed at how these products have impacted her way of living and with her tenacious entrepreneurial spirit, she took the initiative of organising a hands on accessibility and usability workshop in order to share her experiences with other members of the Usher community so that they too can enjoy the benefits of exploring these new arrivals. 

Commanding the attention of an audience of around 30 (and their canine partners) is no mean feat for any speaker, however Molly and Chris managed this with ease and the audience soon became engrossed with the content and couldn’t wait to get hands on with exploring their own devices. 

Not having previously had the need to explore the accessibility features on my mobile phone, I was suitably impressed by some of the tips that Molly and Chris shared with her group (Screen Reader vs Speak Screen, voiceover, inverting colours, zoom/zoom region, swiping with two or three fingers, double and triple tapping the home button -who knew all these options were available etc) that even I myself, a sighted and hearing individual have adapted to using some of these techniques to make my access that much more comfortable for myself including the ‘show controller’, zoom window and nightmode on twitter now that I have reached the age where I have to rely on reading glasses to see anything on my screens.  

About me:- Passionate about the Digital Landscape and emerging assistive technology that is taking the connected smart home and city by storm, it is through my profession in proximity mobile marketing and my basic understanding of the Deaf community that I have identified a unique and niche new form of digital communication using a combination of this emerging technology and a mobile application as part of a #SmartCity Infrastructure that will transform the lives of millions of individuals offering them a more independent and inclusive way of living. I have started a project to develop this revolutionary new digital communication channel dedicated (but not exclusive) to the Deaf, Hard of Hearing and Sight Loss community and it was during my research into this project that Molly and I connected. In my experience of proximity mobile marketing where creative agencies are continuously looking at emerging tech and innovative ways in which to engage brands with their audiences in the physical world there is a lot that they can learn from people who have restrictions in life with how to overcome challenges.  

I would like to leave you with this quote - Employees with disabilities drive innovation. Disability creates a constraint, and embracing constraints spurs inventive solutions - Haben Girma and please do consider that Molly-Watt-Trust is an independent Charity - Molly Watt Trust, registered UK charity 1154853 and would benefit greatly via any donations, please be generous.

I would like to take this opportunity to thank Molly, Chris, Jane and Andy for being such wonderful hosts, great cakes by the way, Thames Riviera Hotel for being so accommodating with the group and their guide dogs and most importantly for all who supported Molly by attending the workshop. There were some wonderful raffle prize giveaways including the Ring Doorbell and Philips Hue starter kit. Let’s hope that there will be loads more to come and I would highly recommend the services of Molly-Jane Watt as a keynote speaker or gadget guru for accessibility, however please do bear in mind she is an independent Charity and cannot survive on freebies.

 

applewatch, #Apple, #Ring, #ReSound,  

 

Author - Frank Viljoen, Director of MOOHBE a proximity mobile marketing specialist consultant working on a revolutionary digital communication channel for but not exclusive to the Deaf, Hearing and Sight loss community.

We are celebrating 3rd Usher Syndrome Day with two day’s of fun and learning

Friday 15 & 16 September 2017 

at

Thames Riviera Hotel

Bridge Road

Maidenhead 

Berkshire

SL6 8DW

The Friday evening will begin at 7pm with an Amy Winehouse Evening full details https://thamesriviera.com/events/adele-returns-2-2-2/

We are delighted to be in a position to offer 20 people with Usher Syndrome this evening free thanks to a kind donor, this will be strictly on a first come first served basis by contacting

There will also be a raffle.

For those interested in attending both events and who would like to stay at this beautiful hotel set on the River Thames we have been provided preferential rates, book early to aviod disappointment.  To take advantage of these rates please contact the hotel direct 01628 674057 and mention the Molly Watt Trust.

Saturday morning will be free and starting at 10.30am.

We are offering a relaxed get together, a free assistive tech workshop, learn how to get the very best from your handheld devices, iOS or android - session run by our own Molly Watt and Sigma’s Head of Experience Design Chris Bush.

This is an amazing opportunity.  

Chris and Molly run this workshop to and with many professionals in design and technology around the country and will be running it in San Francisco later this year.

All with Usher Syndrome /RP or parents/carers of those with these conditions would benefit hugely from this workshop.

Coffee, tea and cakes will be available.

There will be two speakers (to confirm).

The whole session should wrap up around 1-1.30pm after which you can enjoy the beautiful area, Boulters Lock, Cliveden or nearby Windsor with all its history and attractions.

Please contact us to let us know you are joining us.

The nearest train station is Maidenhead, it is a 15/20 minute walk from the station.  There is a taxi rank at the station or please contact us for alternate taxi numbers.

 

 

We met a lovely lady from Northern Ireland at a Molly Watt Trust ‘In it Together’ event in Edinburgh in October 2015, she has been a hearing aid user since she was 4 years old and was managing very well.

At that particular event we were very fortunate to have a presentation from GN ReSound’s Graham Roberts who was able to share with us the many impressive hearing aids and products available from the supplier.  

That presentation together with Molly’s in depth and ongoing testimony of her GN ReSound LiNX² and how they have enhanced and enabled her life led to an influx of enquiries about how and why these enabling smart aids are not available to those living with Usher Syndrome (deafblindness), particularly as they offer far more than most hearing aids provided by the NHS.

It is fair to say everybody at that event, particularly those using hearing aids where very interested in the enablement smart hearing aids can provide.

Molly coped with standard Phonak hearing aids provided by the NHS until she was 20 years old, however, from 14 years old when she became registered blind, deafblind she struggled and the reason for this in the main was because of her blindness.

For 6 years Molly insisted her hearing had deteriorated even though test after test showed her hearing, thankfully remained stable.  

In actual fact what had happened was her ability to lipread, to use facial expression and body language had gone along with her sight, her ability to access sound and communicate had dwindled, demonstrating just how much the deaf rely on their eyes to hear.  In other words she could no longer ‘fill in the gaps’ that her eyes had enabled.  

It is a fact that the deaf hear with their eyes.

GN ReSound LiNX² provide a hearing experience those who have experienced really benefit from.  They provide an incredible clarity of hearing, they enable directional sound meaning that whilst Molly is blind she can now turn towards a sound, something she could not do with her NHS provided Phonak hearing aids, she can also identify not just where sounds are coming from but most importantly she knows the sounds of danger - just imagine how important that is to safety for the deafblind.

These hearing aids have incredible bluetooth connectivity to iPhone and applewatch, also android devices giving the ability to many deafblind to access aurally things they could only dream of previously.  Using a telephone as a telephone for the first time ever is most certainly a huge positive.

Not only can they be adjusted be independently adjusted but enable a very personal hearing experience and in so doing bring great confidence and independence.

Our friend from North Ireland was one of many desperate to have access to GN ReSound LiNX² and indeed has asked her NHS audiology department, their response was somewhat bizarre - an appointment with the Cochlear Implant Clinic!

Cochlear implant is amazing technology for the deaf, however, not only is it not for everybody it is also incredibly intrusive, expensive and most importantly not what the patient wants why not consider more enabling hearing aids which happen to be a fraction of the cost. 

Figures suggest the cost of 1 cochlear implant would be close to the cost of 10 pairs of best quality smart hearing aids!

There are lots of people who have been hearing aid wearers a long time and like Molly have gotten on very well with them but now need more as Usher Syndrome/ blindness looms close.

GN ReSound have a variety of hearing aids including the ENZO2 for those with a profound hearing loss and whilst they are the creme de la creme of smart hearing aid technology their cost in comparison to cochlear implant is very reasonable.

Cochlear implant involves surgery, it is considered that deafblind people should have two implants to enable directional sound for safety and rightly so,  directional hearing is a must for the deafblind, safety is imperative for all, whatever hearing aids worn. 

Most get one implant at a time so often two surgeries after each substantial aftercare and rehab at huge cost.  

I’m not saying this shouldn't be the case, of course it should where appropriate, however not every deafblind person wants such invasive surgery preferring an alternate option.

Patients should always have a say in their care as it tends to be them who are the real professionals and who will have done the research based on their condition.

I know there is a long and in depth assessment for cochlear implant and so there should be but surely every patient’s individual requirements should be considered?

My friend in Northern Ireland was told there is a 3 year waiting list is this acceptable?  Why not consider best hearing aid options?

We continuously hear that our NHS remains financially fragile, that it needs more funding but very rarely do we hear about solutions, about genuine savings that do not include reducing staff - surely this scenario has to be seriously considered

I would like to say our friend in Northern Ireland’s scenario is unique but sadly it is not!

Monday, 20 February 2017 14:20

A Visit to ATOS London Offices

I recently visited the ATOS London Offices, for an appointment set up by my Mum, Jane.

We were there to meet with Dr McKillop to discuss varying issues and negative experiences I and many others have endured at PIP assessments and as a result of inappropriate awards for many of us living with Usher Syndrome or Retinitis Pigmentosa (RP).

The meeting was set for 2:30pm purposely so I could travel to London outside of rush hour.  Mobility for the deafblind/blind is stressful anytime of the day but particularly in busy periods. 

I had been involved with with the original pilot assessment for PIP, as a result I was not overly concerned about my assessment, unlike many who not only find filling out the application form stressful and inappropriate for people with sensory impairment and need assistance completing it.  

I am lucky my Mum has always taken care of forms for me and as capable as I am I dread the day I have to do form filling alone.  

I shouldn't feel that way, with real understanding, using the assistive technology available and good lines of communication there has to be a far more appropriate way of doing things that do not cause so much distress.

Finding a better way is something I would like to work on with whoever would like to work with me.

Planning the journey into London was much easier with my Mum as she was able to drive us both to a tube station.  The tube is much easier to use than the mainline train, however, it isn't easy.

On this occasion, Mum decided to drive and park at Hounslow West tube station, so we could take the Piccadilly line, followed by the Victoria line to Warren Street station and then a short walk to Triton Square. This was the most direct route with minimal changes underground. 

The reason Mum drove into Hounslow was as a result of thinking ahead to avoid crowds, anxiety and darkness. Though the meeting started at 2:30pm travelling into London at any time is stressful for a DeafBlind person. 

My guidedog is partially retired and whilst Guidedogs for the Blind have told me I could wait up to 18 months for a new guidedog life cannot go on hold for this amount of time so I have to make the most of the resources I have, in other words to ask for help when I need to and to get from a to b using my cane.  I am not as comfortable or confident with my cane outside of my comfort zone which would just be my local area. 

Whilst I am in this situation I have to arrange my work and transport around assistance from others as my work takes me all over.  I’m very lucky to have a very supportive family and network of friends happy to help when they can but for me asking for help isn't ideal but something I have to deal with.

On this occasion I had to use my red and white cane (red and white striped cane indicates user deafblind) and thankfully had the assistance of my Mum to make the day less stressful.

Forward planning is always a must so with Mum it meant a half hour/forty minute drive to Hounslow West tube station to take roughly an hour tube ride to central London for the meeting at 2.30pm.

Then allow an hour, possibly two for the meeting, hope to miss rush hour on the tube back to Hounslow, knowing that on reaching Hounslow West and the car it would be getting dark this time of year.  At least this way I could sit in the car with my eyes closed (rested) after a challenging journey.

I should point out that Retinitis Pigmenosa (RP) which is the blindness part of Usher Syndrome is tunnel vision and often results in complete blindness in the dark, bearing in mind through winter months the days are long and often dark so very challenging.  winter also brings the brightest sunshine which also causes unbearable glare on very delicate eyes so also blinding.

Though the journey was carefully arranged in a cautious attempt to reduce as much anxiety and stress to myself as is possible this doesn’t ever totally eliminate stress. I would hang onto Mum and whilst I am trusting the cane to detect dangers, obstacles and depth perception I still naturally scan around me in an attempt to use any visual clue that helps me navigate safely. 

Scanning is exhausting with 5 degrees in one eye, plus the ongoing light changes the underground brings additional stress to the eyes because of the darkness (night blindness) and sensitivity to light and changing light conditions. 

At best it is a horrendous headache and worse a total nightmare.

I know you could think stop scanning right? Or maybe even close your eyes and rely on the cane and allow Mum to guide me!

Much easier said than done, especially with progressive conditions like retinitis pigmentsosa as though registered blind I was born fully sighted so closing my eyes does not come easy, scanning is very much a part of the coping strategy even though it is horrendously exhausting.

I explained to Dr McKillop that what I get from scanning is useful as in, when I look at a face I can only see a small portion of it, perhaps an eye and nose or a mouth, for me being deafblind I would scan the face to draw up a picture of the face as a whole in my mind and then concentrate on looking at the mouth for lipreading which is another part of coping strategy but as I’m sure you can imagine truly exhausting. With my new hearing aids I now benefit from being able to locate sounds, I often look to where I hear the sounds to better hear this could be anything, a person, a car, train, siren, lots of environmental sounds that help keep me safe.

My head will naturally turn to where I hear sound and without thinking my eyes are open and scanning to detect the sounds - all strategies developed to cope in  a world of sight and sound.

Ticket machines at tube stations are not easily accessible and tube travel not free for people not living in London.  There was nobody in the tube station to help me purchase tickets so again thankfully my Mum was able to do this for me.

Once on the tube, and seated I then use my iPhone to zoom in on the underground maps to check how many stops there are before changing tube (I looked prior on ‘Tube Tamer,’ app) I find myself closing my eyes to rest, RP eyes are incredibly sensitive and closing them when I can is helpful.  It is a lot less stressful sitting next to somebody I know, I rest my arm so it is touching my Mum’s, I feel safer then and can relax a little.

Once I know exactly where we are going, who I am with, how many stops I feel a little reassured. 

Reassured enough to not feel or watch the motion of the tube going from tunnel to outdoors to tunnel, light to dark, dark to light, as this is very disorientating. I avoid this as much as possible as my eyes struggle to adjust in inconsistent lighting, lighting conditions.  

I discovered a few years back I could not look out the window of a moving car door without feeling a little motion sick, my eyes will often feel they are bouncing side to side, and having my eyeballs feel they move around so quickly without moving my head hurts. 

I can no longer just peer out a window and watch cars drive past, just like I can't sit in a moving train or tube and watch the outdoors in a moving vehicle.  As time has gone on I have realised that to avoid feeling unwell or any onset of vertigo before I have stood up, I will often just close my eyes. Having my new hearing aids go some way to reassure me of my surroundings, listening for the tannoy for any crucial messages, but of course on this day I had Mum.

Having Mum relieves a lot of stress.

Between underground lines we had to travel up escalators, if I had my guidedog it would have been the need for stairs or lifts as she was not escalator trained and in the past this has been a source of worry for me as although I do not live in London I do travel to London for work fairly regularly and once again I would have to find out which tube stations are accessible for Unis and I!

The majority of the journey was on the Piccadilly line then a series of tunnels, escalators and lifts to the Victoria line, onto another tube, this time only for 2 stops. 

Thankfully Mum guided me to where the lifts were to avoid more crowds. My cane tactfully establishes where steps are, and at the top and bottom of steps there are bobbly grids that I could also feel through the cane to indicate the start and end of a set of steps. 

Signage underground is everywhere, and up close I can see however without walking close enough to see or using my iPhone to magnify I couldn’t access this material.

Thankfully on this day I had my cane and Mum.

Navigating up more escalators, where I would hold on to the railings to keep me upright without feeling dizzy with all the light changes going from underground to ‘overground.’ Before you know it we have to find our tickets and tackle crowds to get through the barriers. There are often underground staff lurking by these gates to assist, on this occasion Mum walked us to a wider barrier /seen as an accessible barrier where a member of staff stood, however he shook his head and pointed to the other side where the other accessible gate was placed, I only knew he had pointed because my Mum told me, I couldn’t see his hands, his whole face just the smallest part of him!  Apparently we had gone to the ‘wrong side,’ how is somebody blind supposed to decipher this?

Again, thanks to Mum she guided me to the ‘correct,’ gate and pulled me through the crowds.

Being outside in the bitter cold was refreshing after being underground for 50 minutes however it was a new challenge. 

The hustle and bustle on the pavements and to navigate to the London offices of ATOS where our meeting was taking place.

On this particular day it was cloudy but bright. 

I had delicate eyes from a headache the previous day the bright clouds didn’t help. The clouds reflect glare and my sensitive eyes do not cope well, even with protective eyewear it is challenging because, of course I am blind in the dark!  Catch 22!

I feel the meeting went very well and was very useful to us all - we all always have something to learn from others.

I was particularly impressed that Dr McKillop considered my travel back on public transport and that he suggested we left before the real build up and madness of rush hour in London.

I was able to share with Dr McKillop a great deal about the challenges both the Usher Syndrome and RP community meet with on being assessed often by people who are not fully aware of the very real daily challenges we face, often because of how we present ourselves and how ‘capable’ we can appear and of course many of us are very capable but not without support and I mean the right support, coping strategies and understanding things the current PIP application form does not take into consideration.

I want to help, to educate and raise awareness of these hidden conditions to those carrying out PIP assessments and also enable people like myself to not fear these assessments which to date are to many very daunting, frightening in some cases - just the thought of an appointment often causes untold anxiety and distress and I understand why when so many are not awarded correctly and then have the added trauma of an appeal, some are even too afraid to apply and struggle on without financial assistance.

I am informed that in the case of Usher Syndrome alone 68% of people who go to appeal win their appeals which is a very high number, of the other 32% most cannot face an appeal and therefore miss out which is very concerning.

After the meeting wrapped up we headed back out into the cold. My eyes had to adjust from the meeting room, the reception and to the outdoors all lighting was totally inconsistent - these things are all very relevant to people like myself and in understanding RP these things must be taken into account.

It took a while for me to adjust and although we left before rush hour the sun was going down, winter sun is far brighter than summer sun and can actually be very painful on ‘RP eyes’ - more light adjustments.  Sunglasses can only do so much and of course the darker they are the more blind I become!   

At this point I am really pleased to be hanging onto Mum, she will be my guide on the way home - not only am I out of my comfort zone, I am anxious and in an environment I am not used to.  This is also very relevant as I live in a small town, nowhere near as busy as a big city.

It was busier, creeping towards rush hour!

Not surprisingly the men and women sat in ‘priority,’ seats weren’t keen on giving up their seats. My vertigo was already playing up from all the light changes and now being underground in a moving tube, all I could do was hang on, lean against my Mum and close my eyes. 

Thankfully although it was busy we did arrive back in Hounslow in good time.

Walking out of Hounslow West tube station at around 5:30pm it was dark. I am fully blind in the dark. Mum guided me to the car and helped me in.  I sat in the front and folded my cane away, ‘until the next time’.

I felt both relieved and relaxed to be in the car with my Mum, also a huge sense of achievement at what we had done.

However once we hit the motorway, listening to some Motown, my eyes began to throb. The car lights and street lights, glare all around me me.

Looking straight ahead all I could see was blur and bright red lights everywhere and even in the more lit areas I’d glance towards my Mum who just looked a blur so distorted is my sight in these conditions, it really is very disorientating and then motion sickness kicks in.

Once again it was time to close my eyes and just let my ears do the listening, to the music and to Mum’s voice, Mum’s reassuring voice I know so well.

What would I do without Mum?

Truth be told, I have to do it without Mum sometimes, and I can - and do, however the stress levels are ten times worse.

As I demonstrated at the Offices of ATOS I manage because of the various tools and assistive technology I have access to, none of which are cheap to buy.

My Resound LiNX² hearing aids connect me to the Apple ecosystem - iPhone, applewatch, iPad and MacBook enable me to have a life and need to be replaced as and when necessary.

These items of equipment are in no way ‘flashy items’ but essential equipment to give me access to the things most can take for granted.

Mobility is the one thing these items cannot directly assist with however they do help with navigation and the enablement to use certain apps that enable when I am out alone with my cane or preferably my guidedog (hopefully my new match will not be long) we can get from a to b as safely as is possible.

This vlog was made to demonstrate the NEED for enabling assistive technology for those who need it: 

https://www.youtube.com/watch?v=_-yrqbaN1II

So PIP is Personal Independence Payment, I’m sure you will see my ‘independence’ comes at a substantial cost and whilst I have a very serious and progressive condition I wish to live my life as positively as is possible and with appropriate support from the state, nothing more and nothing less.

We all deserve that consideration. 

This vlog was put together in part on my way into London that day and thereafter using my ipadpro to demonstrate and simulate my trip.

I would say the visual field here is greater than mine but gives an idea of the challenges people with Usher Syndrome and RP deal with: 

https://www.youtube.com/watch?v=Hq6rRQTIoqM&t=200s 

 

Friday, 06 January 2017 11:32

Bali - Sound Sensations

At the end of my work and networking trip to the other side of the world, Mum and I decided on a a trip to the beautiful island of Bali to spend the last 10 days relaxing.

Arriving in Bali was surreal, it was dark outside, I hate arriving anywhere in the dark as I see so little.

We were very tired and our body clocks were already extremely confused! We were met with intense humidity whilst looking for our taxi service. 

At Denpesar Airport we were met by a sweet Balinese gentlemen dressed in traditional Bali attire.  

I felt quite important when Mum pointed out this man who was stood waiting for us holding a banner with our names on it.  This lovely man spoke perfect English and without much of an accent so I was able to understand him quite easily, accents can be a problem for the deaf, thankfully for me, not this time. 

The hour drive to Ubud for me was exhausting, it was really dark so I could not appreciate Bali's ornate beauty.  What I could see was darkness amongst blurred street lights the lights hurt my eyes.  It was incredibly disorientated amd quick sick so I put on my dark glasses turning my focus to communicating with the gent and his colleague the driver taking us to our destination, thankfully with no communication barrier it was pleasant interacting and finding out more about Balinese culture. 

On arriving another surreal experience, I was guided by my Mum up some large steps, the lighting was low and I could hear water fountains, both left and right of the rugged steps but I couldn't see them in the dim light.  I stopped on the steps holding onto my Mum’s arm, I had not experienced the still yet peaceful sound of water flowing before - I have to admit I felt quite emotional and incredibly lucky to have hearing aids to provide me with such beauty I couldn't see, but my imagination filled in the gaps.

As we carried on up the steps I sensed we were “inside”.

However Mum informed me whilst we were at reception we were still actually outside.  Mum gave me a quick audio description which helped me form a picture of serene beauty and tranquility in the middle of a jungle.

There was water all around us in the lobby/reception.  I felt frustrated I couldn't see it all, but so grateful to hear the flowing water, to smell the natural smells, flowers, damp trees, the smell of the Balinese countryside and to hear new sounds, I’ll come back to those sounds, the real feeling of peacefulness.

At the reception we were once again greeted by more incredibly sweet welcoming Balinese staff.  

After check in and a complimentary sweet fizzy drink (was not totally sure if it was alcoholic or not!) all my senses were truly tested! 

Mum soon grabbed me and guided me back down the steps and to what I was told was a golf cart already loaded with our luggage. We were then escorted to our chalet, what service I thought!

On opening the wooden gate into our private chalet I could see a little light coming from within, I couldn't wait to get inside, get some better lighting and really see where I was.

WOW, I was not disappointed, we were shown around our chalet like VIPs, I felt incredibly humbled. The bed was draped in what looked like sheer sheets hanging from the ceiling, the floor was made of large man made concrete slabs, small tables were decorated beautifully with Balinese flowers. The whole decor was ornate and stunning. The bathtub was almost the size of my double bed at home, and then a door opened to what was our outdoor shower! Again everything beautifully decorated with flowers, plants and everything ornate. I was quite overwhelmed and still I could hear noises, noises I hadn't heard before!

I was really tired that night but I couldn't sleep, I never sleep with my hearing aids in but on this particular night I didn't want to take them out.  I was enjoying hearing the sounds of the jungle, I knew I could hear birds outside and some running water but really couldn't decipher the other noises, I was fascinated by the sounds, it still amazes me that I can hear outside with my Linx2 smart aids, something I could never have done previously.  I went 20 years thinking you only hear sounds in the same room as you! 

I fell asleep for the first time ever wearing my hearing aids!

The following morning was an out of body experience! I woke to morning sunlight shining through the sheer drapes from the ceiling around the bed, fortunately the drapes stopped the bright glare of the sun so I wasn't blinded by the brightness.  

I hadn't noticed how many large windows with blooming large leaves growing in and out of the chalet met with the primitively made roof in our ornate and beautiful chalet. It all felt incredibly natural, the outdoors reminded me we were in a jungle in Bali.

On opening the patio door, WOW, I couldn't quite get a grip! 

Scanning around I noticed a pool, being overlooked by a Hindu God statue fountain, ahhhhh, that was one of the sounds I’d fallen asleep to.  The statue was also decorated in beautiful natural Balinese flowers, two sun beds on a small decking adjacent to the pool, and then a straw roofed hut with two massage beds also decorated with flowers. On the patio was a huge chaise lounge, a sink a table with a large bowl of tropical fruit on top and four chairs what more could we need?

A trip to the spa I thought, that really would be paradise, so we booked for that evening.

I was desperate to see what I had missed the night before so Mum and I tested out the outdoor shower, quite an experience and again I was taken aback by the smells of the hand made shower gel, soaps and shampoo it really was something I'll always remember.

Dressed and ready we left our part of paradise and ventured up to the hotel reception area where the restaurant was to be found.

My Mum was chatting to me on the short walk but I wasn't listening, I was still fascinated by the sounds coming from all around me, I could definitely hear birds and definitely more than one kind, I could hear running water.  I was trying to concentrate really hard on what I could hear.  The sounds were all quite relaxing, I'd never experienced these particular sounds before.

Mum guided me to reception and this time I could see the ponds of water either side of the walkway and I could see huge fish and again fountains shaped like Hindu gods and decorated in tropical flowers.  There were also burners that smelt tropical, it really was a feast of the senses.

The receptionist greeted us and offered us a local hot drink whilst we decided on treatments for later that day, finally I felt able to relax after a very long and busy couple of months.

We had a breakfast of fresh fruits and local produce then headed back to our private paradise to enjoy the sunshine and warmth of Ubud.

I was able to lay in the sunshine and unwind listening to the unique sounds of the jungle.  My headache lifted and I felt good.

After a day of sheer relaxation and room service I was looking forward to some pampering.

On arriving at the spa we were offered drinks, haven't a clue what they were but they smelt of ginger but tasted of something else!

Two ladies showed us into the private room overlooking the jungle.  Inside where two massage beds, the view was stunning. 

It was amazing, the whole room overlooked the jungle, ornate frog statues were everywhere, beautiful flowers, I couldn't believe the colours, the smells and the sounds, sheer peace and tranquility.  

Having been massaged with magic fingers and hands from head to toe, we were then covered in a seaweed wrap and then before long we were told to shower and then soak in the jumbo sized free standing bubble bathtub which was full of floating flowers with an aroma I'll never forget surrounded by candles it was truly heavenly.

After the masseuse's left mum and I looked at each other and smiled, a long time since we shared a bath! Fair to say we laughed. 

'Where should I put my hearing aids Mum?' 

I couldn't see anywhere safe to put them without losing them in the jungle or the water! 

Mum took them and put them on a shelf near the towels. 

After our glorious soak in the huge bath overlooking Bali's outstanding nature, I remember feeling happy that it was still light outside so I could appreciate my surroundings even though it was in silence, it was absolutely stunning. 

Getting out of the bath we felt completely fresh and relaxed. 

The warmth on our skin dried us in no time, though being wrapped in a towel was somewhat refreshing. 

We sat quietly in rocking chairs looking out watching the sunset and darkness descend upon us before getting dressed. 

‘I need my hearing aids mum’ Mum's glowing face frowned, she couldn't see them, I was of no help in fading light so sat still and safe whilst Mum searched and then the horror, surely they have not fallen into the giant bath of scented flowers and bubbles!

Mum put her hands in the deep water and horrified she fished out one hearing aid, followed by a second we were both speechless

My mind was racing, 9 days without hearing, 9 days to not appreciate the beauty my hearing aids provide me, the unique and new sounds of this beautiful place and the everyday things like conversation, chatting with my Mum, conversing with the locals, communicating, there'd be none of that accept on those rare occasions when my sight is at it’s best and I can lipread.  My mind was racing.  I felt physically sick the thought of being blind and not being able to hear filled me with horror, how would I cope.

Mum was speechless, in shock, she knew 9 days without me being able to hear would be tough on us both and would definitely have spoilt our holiday.

Mum insisted I take the batteries out and throw them away.  We got dressed in record time. 

Mum wrapped my hearing aids tightly in a tissue and put them in her purse.  

The walk back to our chalet was in silence.  I hung on tightly to Mum’s arm, I felt very disorientated in silence and darkness and felt very vulnerable.

As soon as we got into the chalet Mum unraveled the now drier hearing aids and placed them in a cup while Mum found the hairdryer going on to use it aiming its heat into the cup for 15/20 minutes, it felt like a lifetime after which she asked me for new hearing aid batteries, neither of us felt very positive but it was the only hope we had.  

I took the first hearing aid, fitted it in my ear and switched on and there it was the short signal sounds to say it was on and it worked, I was beyond happy, I felt elated.  One working will be better than none I thought as I reached for the second hearing aid, put the battery in and again those switch on sounds and hearing aid two on and working WOW, I was so overwhelmed I was tearful - these tiny hearing aids are a huge part of what makes me tick.  

I didn't want to switch my hearing aids off again that night, not only was I afraid they may not come back on but I wanted to continue to enjoy the sounds of paradise.

Thankfully my hearing aids did not let me down and continue to work and I appreciate them more than ever.

The following day we talked a lot about the sounds of Bali and that one sound I kept hearing but couldn't identify.

sat at the bar after a tropical shower I asked Mum and the barman what the strange, louder than normal noise was ‘ah’ said the barman, ‘that is the noise of the frogs, they are always noisy at night and even noisier when it rains!’

I was wide eyed, anybody who knows me knows I have a bit of a thing for frogs and yet I had never heard a frog before!

How I love the sound of frogs.

That hour or so of shock was a reminder to me just how important hearing is to me and why others like myself should have the opportunity to use such impressive technology, it really is life changing.

There is no doubt in my mind, if my hearing aids had not worked after the accident at the spa without a doubt I would have struggled, my holiday would have been ruined and my confidence destroyed.

Hearing is my access to people and without people and sight I fall into isolation how obvious that became that day in paradise.

I have written and spoken extensively about my GN Resound Linx2 smart hearing these aids over the last 20 months and what they have given me but that day in Bali, the fear I felt at not benefitting from hearing made me very aware that praise I have given them is little compared to what they give me every single time I switch them on.

NB  I would not recommend having your hearing aids anywhere near water or where they could be damaged but am thankful my pair stood that terrifying ordeal.

 

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 14:11

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 14:17

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 12:34

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!

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