Day 2 – The Simple Things in Life *

*Or NOT!

Today I am inspired by chatting to someone who has  only in the last 2 years become visually impaired. Meeting a relative newbie at the start of learning to live life independently with a sever visual impairment has made me think of all the little adaptations and things i do in a strange way without even thinking about it.

Take for example making a cup of coffee and carrying it over to your faviourte spot on the sofa to curl up and watch TOWIE (or whatever the latest TV craze is).  How do you get that boiling water from the kettle into the cup? Let alone carry the cup of hot coffee from the kitchen to the sofa around relatives, friends and animals without ending up wearing it?

The bottom line is you don’t I regularly spill boiling water on my hand when I make a hot drink, it does not scold me because by the time i have said a naughty word and waved my hand in the air the water is at a much cooler temperature. On Teaspoon going from jar to cup I always spill coffee and sugar. Not to mention just the other day I tripped over a shoe at a friend’s house and promptly redecorated her hallway with my cup of tea.

My mum rang me earlier today to tell me she had polished her shoes with fly killer instead of shoe polish, you find a can in the cupboard how do you know which one is which? The reality is if it’s not where YOU ALWAYS leave it then mishaps happen. In the past I have been washing my hair and accidentally used sun cream instead of shampoo which is a horrible experience because of the greasy nature of sun cream but it happens.

Yesterday I realised how lucky I am that I don’t have any food allergies, I was buying cake for a friend who does and it suddenly occurred to me that if I had been on my own I would have had no clue which cake would make her ill and which cake would be safe.

Best before dates… Need I really explain?

Think about walking down to your local corner shop, now imagine that with your eyes closed, does the thought of walking to the shop with your yes shut scare you? Then add into the mix all the things you could encounter on your journey; Pedestrians, cyclists, traffic, road works, pot holes, chewing gum, overhead branches, children, birds, wheel bins, lampposts, postboxes… There where some shocking statistics released a few years ago that 8 out of 10 blind people never leave the house alone due to fear and lack of confidence if you couldn’t see where you were going would you make it to work on time?

This is a topic I have written about before I realise both here (You know your a blind person when…) and on the BBC Ouch Website (How to **** in the woods) but the point still remains, things I do every day are different to that of a sighted person, for example right now writing this very post I am not poking at the keyboard or my computer screen, I like to write with my eyes shut and without and screen reader software so its just me and my fingers dancing across the keyboard. I type at my fastest when I  and not looking or listening to anything else and its something I really enjoy having the time to do on occasion. Of course when it comes to proof reading and editing my writing I do look at the screen but then still miss half my typos anyway! Sorry blogosphere your just going to have to put up with me writing utter rubbish that is not grammatically correct!

 

Advertisements

Dragon Dictate

MacSpeech Dictate has now become Dragon Dictate and I have just, with in the last 24 hours updated period in fact I’m using it right now to write this entire blog post.

Since upgrading to Mac OS Snow Leopard MacSpeech Dictate failed to work as it was not compatible, forcing an upgrade at the time I decided against it as MacSpeech Dictate used to drive me mad with its lack of accuracy. I spent more time correcting MacSpeech Dictate then I did actually using it to be to dictate text the commands were difficult to master and the whole process seemed totally unnatural. Added to my frustrations was that I also had a US version which just seem to further complicate matters.

Previously I had to use Dragon NaturallySpeaking or Windows based computers and found this to be largely successful was completing my A-levels, some of my coursework was completed in its entirety using their software without spending hours training and constantly correcting it so my hopes MacSpeech Dictate were quite high; I was very disappointed.

I said quite recently that DragonDictate had been a huge leap forward in terms of speech recognition to the  Mac OS, I decided somewhat uncertainly that I would give it a bash and I must say I’m very pleasantly surprised!

After very little training the speech software is able to do a very good job of recognising my speech, it makes very few mistakes, and most of these I can tell are due to my own hesitation/slurring of words or commands (no I’m not drunk)!

My only criticism is that the processing speed seems quite slow, although this could be because I speak quite fast,  all because of my computers processing speed however I am using a 2008 MacBook Pro.

I have had the software less than 24 hours and still is fiddling around with the correct ratio between speed and accuracy, but I would seriously recommend it.

I have deliberately left in mistakes in this post as I wanted to give a real representation of the accuracy I am achieving after having the software less than 24 hours, so please forgive me! you are

Spurred into action

Well bloggers its been a while quite frankly hasn’t it? In truth I have been rather apathetic when it comes to keeping the blogosphere updated in the world of Jemma Brown, this is in part has been due to sheer busyness but also a slight lack of motivation.

However this morning all that has gone I am ready to blog I am unsure as to whether it is the sleep deprivation, the mixture of caffeine and sugar rushing through my system or just my puzzlement and need to share it with someone who will understand – not that I totally expect this blog post to be understood by the masses. This last view point is not because it is complicated but because i myself am confused.

I’ve just read that NICE is withdrawing funding for the cancer drug Avastin.

The article is sketchy but this is a worry for me, Avastin is the drug that I periodically have injected into my right eye to help prevent the impending explosion of blood vessels that will without being kept in check result in my loosing all the vision in my right eye.

The treatment I have received three times now (I think – it might be two, I honestly can’t remember) without it I would have lost all the vision in my right eye by now. Don’t get me wrong my right eye is rubbish, it has always been the less useful of the two but as i am sure my readers will appreciate any vision no matter how little is precious.

So anyway back to the point in hand I am still researching as to whether the drug is also being withdrawn for its use in the treatment of Wet Macular Degeneration… Its a complicated issue so I am going to just ask my consultant when I see him next week.

London’s Mascot’s

This week the organisers of the 2012 Olympics and Paralympics announced and unveiled the mascots for the games. They have proved to be VERY controversial as my friend Sam highlighted in his blog, as well as a lot of headlines tearing the mascots apart.

I am pleased that one of them has a link to disability and is remembering that the UK held the first ever Paralympics which is defiantly  something to be proud of.

In an effort to be accessible which I am quite appreciating the organisers have released the video showing the first part of the story of Wenlock and Mandeville with audio description, for those of you that don’t know what that is watch it and you will soon understand.

Blinder

Well readers as you may well be aware I have, simply for ease of understanding labeled myself as a blindie for some time. When you refer to yourself as a blinky most people of a certain age think you are talking about a cartoon koala bear not describing your visual impairment as partially sighted. So blindie has worked to convey that sense of hey I’m visually impaired it’s not a taboo subject and I am comfortable to talk and even joke about it.

I have been partially sighted since the day I was born, well I was actually born with very little sight at all but after some fantastic surgeons working there magic on my tiny peepers all I have ever known is partially sighted.

Growing up it has been drummed into me, quite rightly by various medical professionals, my parents, teachers and sometimes even friends that I have to be careful about a bang on the head. This is because if I sustain a serious blow to the head I am at a higher risk than your average human being of detaching a retina at the back of either eye or worst case scenario both!

I never expected anything more than this, I am a realist and I am grateful for what I have. I also never really expected anything less for most of my life I thought everything was going to stay stable and  be the same for ever. Oh how naive I was!

Last Monday I went for my appointment after I had the hemorrhage a few weeks ago. The very nice consultant, who incidentally reads my blog here (hello Mr N) confirmed that I have had a bleed and the general state of my eyes,  especially the right one is not good.

We decided together that I could now be registered blind, before that moment I was partially sighted the way I had always been growing up and suddenly I had the new label of a blind person.

The thing is the more I think about it the more I realise that it is just a label but this is very difficult to comprehend.

A tiny part of me is devastated which I think is only natural but in reality the change of terms means almost nothing. I have not changed as a person my life is not going to change much if at all with this new label but it feels very strange.

I guess to sum up everything quite simply its a blow and a shock but it could be worse and it’s not the end of the world.

Positives will come out of it,  I have the joy now as a person registered as blind to a half price TV license so one day when I have enough space and money to buy a TV I can look forward to paying less license fee!

Further Vision Loss

On Sunday I had been back from Church say about 30 minutes when I noticed what is affectionately known in the eye business as a floater.

For me given my previous Sub-Macular hemorrhage this rings alarm bells in my brain.

After a brief spell of panick and trying to work out what to do with myself I rang ahead to Eye Casualty to let them know I was going to head in.

One £10 Taxi fair later I was stood outside Southampton’s Eye Casualty but was totally unable to go in. Not because of some anxiety driven panic that froze me to the spot but because there was a keypad with lots and lots of buttons and a small intercom with yet more buttons on it just above. There was also a very small water damaged sign that I presume said something important but I honestly have no idea. So there was only really one thing for it, I stood there and pressed buttons totally randomly and hoped for the best… This was far from successful and after some time had elapsed I pounced on a woman walking past and asked her to help.

When I got in I announced my presence to the nurse booking in patients and composed myself. This is necessary because the Eye Unit complete with Eye Casualty can be a stress full and incredibly dull place. 

Regrettably I went alone, just myself and Gus. I could have really done with someone to come with me but also did not want to worry my parents or friends on the odd chance that it was absolutely nothing to worry about. Not to mention the inconvenience to my friends if I rang and asked them to come down – I realise now this was totally stupid but it’s how I felt at the time and I guess I was simply in denial!

After some time the tests commenced: Distance vision test, blood pressure, blood sugar, pupil reaction, intraocular pressure (IOP) and ultrasound. I was rather intrigued by the ultrasound scan, I had never had one of those before and did not know it was even possible to scan an eye, but it is.

By this point I knew what it was and was simply waiting to hear it from the doctor.

Several doses of pupil dilating eye drops and 20 minutes of waiting for something to happen to my pupils. The doctor was able to get a semi-decent view of the back of my eye and confirmed a new haemorrhage in the back of my eye.

This is obviously pretty devastating, its means further deterioration and uncertainty. There has already been damage done to my vision by this bleed and I am left to wait to see what happens.

So all this happened on Sunday and I was been told if I have not heard anything within 2 weeks to give them a call and chase things up. Considering the state of the administration at Southampton Eye Unit and the problems I have had with appointments previously I don’t hold out much hope so have already phoned my Consultants secretary to chase this up.

I am yet to see or even hear from a consultant about this, so I am left in total limbo with no idea what is going on. I have no prognosis for this bleed, no idea whether I will again be able to have off label treatment with Avastin and even more worryingly no idea if the blood vessel at fault is going to leak more whilst I am left to wait.

I am incredibly thankful to the guys at the Solent CU and Church that have already prayed for my recovery. If you are so inclined and have the time please send out a little prayer for me.

  • The Previous haemorrhage can be found in the following posts (In order of appearance)
  1. Today’s visit to The Eye Unit
  2. Eye Casualty
  3. The Consultant Calls
  4. I am going to fight
  5. No Pretending
  6. The effect of it all
  7. I’M GOING TO GET A NEEDLE SHOVED IN MY EYE!
  8. Avastin is go!
  9. When they said ASAP they meant it
  10. My day on the ward

The iPod Touch Edition

Hello and may I start by saying I hope you had a fantastic festive season whatever it was you were celebrating.

I have had a most fantastic time myself, we had a somewhat unorthodox Christmas as we were unable to have a christmas tree in fear that our furry friends would simply destroy it. Still Christmas Day was a relaxed affair, presents followed by a beautiful walk around Stokes Bay beach for us all.

Boxing day I went to stay with my other half who surprised me with lots of VERY lovely presents.

The biggest surprise was the iPod Touch I am using to write this.

Those who know me well will know that I was going to buy myself one with my student loan eventually comes through. I have been going on about how much it would enhance my very existence for some time probably driving everyone totally bonkers.

When the iPod Touch with inbuilt text to speech and full screen magnification was launched it went straight on top of my ‘Thing;s I’m going to treat myself to when my loan comes through’ list.

My opinion of its Text-to-speech capabilities it’s utterly fantastic and completely revolutionary I would really recommend it to any blindie who wanted a new MP3 player or for that matter a new phone.

It’s just as good as I imagined and continues to astound me with its sheer greatness.

Not the worlds most objective review I know I will get back to you with a better one at some point.

I Need Some Help…

This is a little random but some of you will know that I am a bit into art. It’s a bit of a long and in places painful story but in the last few months I have really got my creative juices going again after a long time where they where absent.

So why do I need your help?

I need a name for the blog I am going to create to host my drawings.

I have no idea what to call it; I think influencing factors when choosing a name need to reflect who I am, my disability(s) but also be light-hearted.

So come on people let’s get going with some suggestions!

I’m Still Here

I have not quit blogging, died or had some terrible accident that has resulted in the lack of posting – I have just been very busy.

A woman with a white guide dog sat on her left

Mum and Tara

University is as hectic as ever, things still fail to run smoothly it seems like the rest of my formal education at university is going to be an uphill struggle against inaccessibility, primitive attitudes towards inclusion and a complete lack of organisation that runs through the place. In short its not going to well, is very stressful but also interesting/fun.

Whilst on the subject of education I did not escape the funding crisis of the student loans failings. Admittedly I applied late but I am still to reciee my student loan. There have been multiple phone calls to my LEA (Local Education Authority) and I am assured it will al be sorted within 6 weeks. Here’s hoping I get some money soon it has been a seriously living on the breadline.

A lot has happened since my last post here, my eye condtion has stableised which was a nice surpise, I never really know how long that will last but its  a bit of a relief.

I now confess to having a bit of a caffeine addiction. I have discovered the wonder that is an expresso and its good! I love a good coffee more than I ever have before. Redbull and other highly caffeinated drinks have got me through some seriously dull lectures and for this I am thankful.

My mum’s Guide Dog Ian has retired and she has trained with a new guide dog called Tara. So now as I am home for Christmas we are a 3 dog household which is a bit of a shock to the system for all of us dogs included.

I have a job! I work 10 hours a week from home or uni or wherever I am really. I am a community executive for a word of mouth project at uni. I recovered from the train journey to get to the training and the 5 days of basically being stuck at a service station in the middle on nowhere with internet at £5 an hour!

Mark and I

I am in love, for those of you that don’t stalk me on facebook I am now in a relationship with a fantastic guy from the Hampshire VI Cricket team called Mark. He also did the Guide Dogs sponsored event that I roped him into.

Writing of cricket I should also mention that I am now joint player welfare officer for Hampshire VICC. I am sharing the position at the moment because I have to do a few courses in child protection before I can officially take on  the role but it’s still great stuff.

This first term at uni I have also found faith in the man upstairs, I go to the christian Union at uni most weeks and also go to Life Church Southampton. The CU guys are a fantastic bunch and very kindly brought me a large print bible which means the world to me. We also went Ice skating together Just before christmas I can’ ice skate but went along anyway and it was a great evening dispite it being really cold!

Heres a few of us in Winchester, I’m not quite sure who took the photo, if I was I would attribute it but hey ho, it’s originally from facebook in the public doman so please don’t sue me people!

A Group of people

CU and Friends Iceskating 09

Snow Leapord – What The Media Have Forgotton To Tell

Apple – Mac OS X – Accessibility.

Snow Leopard the latest update to the popular Leopard operating system installed on all modern day Mac computers has got an update, it’s only a little one and mainly focuses around bug fixes, it’s not a complete overhaul of the way the system looks but at less than £30 you would not expect a miracle.

Opinion as I have understood it has been divided, many see snow Leopard as a bit of a waste of money and time, its well documented how it is faster than Leopard (which I have never found slow).

There are a collection of features that have not been spoken about in the public eye that I have seen in any way and that is the updates to the already good accessibility tools.

To put this into context most of the time I use something called Text- To -Speech or more commonly referred to in is easier form of TTS or a Screen Reader. For Mac this is something called Voiceover. Basically a lovely little American man called Alex reads me everything that happens on screen, all the things I would struggle to read. I navigate through different windows and applications with ease and am able to for the majority of my time edit the two websites and one forum which I own and manage solely using this software.

Its hard to explain to a person that has never used TTS but when Apple created Voiceover they took the manual on making TTS engines and threw it off  a plane before passing it through a mulching machine and stamping on its mussy remains. Voiceover is unique anyone can use it straight out of the box, no additional software needed.

A blind person can go along to an Apple store and say ‘I would like a MacBook please’, pay for it  return home open the box and use it straight off. Apple are the only computer and software developer to do this, they are incredibly committed to accessiblity and see there products as the way forward, even the iPhone3G S now has Voiceover and can be used by visually impaired people.

With the Microsoft  counterparts we all know and… hate that is simply not possible, you would have to purchase your laptop then spend an additional £800 on software to make it accessible and then install the software.

Snow Leopard is once again revolutionising the way that blind and partially sighted people use their computers TTS engines have forever relied on the keyboard to allow users to navigate their way around their computer, this is no more.

With Voiceover and Snow Leopard OS X 10.6 users can now not only navigate with the keyboard but also with the touch pad on MacBook’s using gestures. Now that for many people may well be the closest they ever get to using a computer mouse, something that if you have severe visual impairment you are seriously unlikely to ever do!  Voiceover is more powerful and better at handling complex web pages with the new release which will be very welcomed by many as there are certain web pages that Voiceover currently just does not have the power to understand.  For example the webpage I am writing this on right now, Voiceover cannot cope with all the information and the styling of WordPress, which is as much down to the design faults of wordpress as it is to the lack of Voiceover grunt. With increased power I hope that Voiceover will overcome the WordPress accessibility issues, but time will tell.

I must now buy Snow Leopard and quickly.

Alas I am not the only person jumping up and down giggling with technology fuelled excitement whilst drooling slightly at apples accessibility my freelancer friend Lesley Smith has decided to convert to the ways of apple, mostly because of the accessibility features I have just mentioned and a fair amount of persuading from me.