Killing Me Softly

Yesterday, the media reported a UN conference on what experts feel are some of the greatest future health threats to the human race – cancer, heart disease and diabetes. The World Health Organisation and Cancer UK have released statistics in the event, showing the occurrence of cancer worldwide is increasing. Research has shown in 2008, the latest figures available, 12.6 million people were diagnosed, with 7.5 million deaths from the disease. It is believed that cancer will increase as the world population increases and becomes more affluent and sedentary.

Analyzing the statistics for the UK, 27% of all deaths were the result of cancer. It is hard to believe that the death toll, already a huge strain on NHS budgets, will not rise as we become more technologically savvied and taking less and less exercise. Personally, both sets of grandparents died of the disease, family members, and a number of friends too.

Now I quite like potatoes, and I have sat on my share of padded chairs which could be called sofas in diffused lighting. I see my body in it’s battles with, and against, my various conditions, with bemused incredulity. Suppose cancer could be in a race – or even team up with – my diabetes and it’s subsequent risk of kidney and liver failure. I will confess that my life is spent sitting and lying down in the majority. Walking is, to put it mildly – interesting – and my food has lost it’s Sat Nav and is going nowhere but the Stomach and Hip Car Park!

I am one sedentary being hoping the stats don’t decide to creep up on me too.

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Driven Up the Wall (not quite but almost I suppose!)

Today was my last attempt at driving. I failed my driving test for the 3rd time. My lack of spatial awareness was the reason I had 3 Serious Driving Errors and a recommendation from the Driving Examiner, through my Driving Instructor, not to try again!

Cerebral Palsy for 45 years so far has given me hourly and daily challenges – depending what mood it happens to be in! However, through the years, I have not given up and found a way to meet most of them more than satisfactorily, until now.

In driving lessons I have made mistakes but with the help of my Driving Instructor have found ways to counteract them. I have managed to drive to the standard needed, that’s why I put myself forward. True, there have always been things to work on after my first and second failed tests, but I didn’t give up hope. I knew that I must change the way I approached the test. Chez-Dizzy was awash with relaxation bits and bobs! I even went through self-hypnosis to aid my concentration and awareness.

Sadly, I have to admit now that this damaged brain of mine cannot process information, move these wonky limbs to the right place and at sufficient speed to deal with the ever-changing demands of the road. I’ve made the same mistake 3 times now. Dual controls saved me today, the Examiner had to stop me joining a stream of traffic going faster than I thought. Without such intervention I could have been injured, and so could he!

My damaged left side of the brain has shown its limitations in the most terminal of ways and I have to listen, even though I wish I didn’t have to! I wanted to pass so much. I wanted to have a car and the independence offered by it so much. Was it too much?

Could I have done it if I had taken lessons in my late teens or early 20’s? My brain was, after all, at it’s most supple then. However, the means to drive, or the will of the authorities to allow progression, did not exist at the time. Indeed, equipment to meet the specific needs of my disability and progress to test has only appeared in the last couple of years.

So this is the last of my DizzyDrivingBlogs. This is the end of a 4 year attempt to become mobile. It’s been an interesting journey! At the moment, I can’t stop crying and cannot see anything but depression ahead – I can’t have what I wanted!

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M for ?

In the news today on BBC Radio Five Live Breakfast there was a story about a woman called ‘M’ whose case is due in court today. Her sister, partner and medical authorities are petitioning to withdraw the apparatus feeding her. They feel that the extent of the brain damage caused by encephalitis in 2009 means that she is in a Minimally Conscious State (MCS) and can have no quality of life. A definition of MCS was first proposed in 2002:

“A condition of severely altered consciousness in which minimal but definite behavioural evidence of self or environmental awareness is demonstrated.”*

Evidence presented today will include the fact that ‘M’ is only aware of the day/night cycle. Further, it has been demonstrated she can push a button in response to stimuli but only inconsistently.

Currently there have been over 40 judgements by the courts in England and Wales allowing the withdrawal of feeding. However, ‘M’ is the first case not in the Permanent Vegetative State. These are patients who survive catastrophic brain damage but are more or less permanently unaware.

‘M’ is not in this condition and it does not seem that she ever will be. I am sure that if she was able to respond to the tests, the doctors and her family would be doing all that they can to help her. I hope for her sake and the sake of those patients to follow her having the same none-ability to do things there isn’t a test yet to be discovered that will show conscious awareness.

I have blogged twice on this condition before these can be seen in my archive on 20/10/2008 and 8/12/2008 if interested!

* Dr. Joseph T. Giacino et. al. (2002). Neurology Volume 58, Number 3

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Learning to Learn About Learning Disability

Communicating with the Police is harder for an individual with Learning Difficulties than for the rest of us. Is this obvious or what???

In a survey by MENCAP quoted in the Guardian today:
Police were seen as failing to investigate hate crime reported by people with learning difficulties properly, or even to regard them as credible witnesses of such crimes! Such instances were taken less seriously than homophobic or race hate incidences. There was a reported lack of hate crime training and of specific officers responsible for dealing with such crimes.

There has, it seems, been an increase in all forms of disability hate crime, unreported and uncared about. Perhaps this increase is fuelled in no short measure by biased and misinformed reporting by the right-wing media. Even when, in 2009, Fiona Pilkington made national headlines when she killed herself and her severely disabled daughter after a sustained period of hate crime by local youths, there has been an increase rather than a decrease in such attacks.

As a support worker, in the past, I have been called in by the police when they have felt that they had problems understanding the needs of a person with a learning difficulty. Sadly, if the person in question said something, and I repeated it word-for-word, they would act on my words rather than the words of the person with a learning difficulty! Who said that the “Does he take sugar?” syndrome is dead! I was hoping things had changed in the last year or two but they haven’t.

If there are no changes in attitudes and procedures, hate crime against those with a learning difficulty may continue to rise, to be unreported or to be disregarded in the future. The saddest thing is that it is probable that disability hate crime against the learning disabled may be taken less seriously than hate crimes against other disabled people. Perhaps because of better social skills, hate crime against the physically disabled or those with mental health difficulties may be taken more seriously! So such a crime may be at the bottom of a league table that is already far below public notice.

It is sad that we must mark the start of Learning Difficulty Week with such occurrences. Perhaps the fact that MENCAP are running this campaign for three years needs no other comment!

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Not Mobile After All…

It’s really sad that we haven’t been able to test drive all the cars that we wanted to on the Motability Scheme.

It all depends on the situation at car dealerships. The economics are such that personnel are made redundant and there is no longer a designated Motability Scheme person. Also it is not economically viable to keep automatic vehicles hanging around just in case a Motability customer needs it for a test drive. So what can we do?

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Well Let’s Tell Everyone What My Brain is Doing…

OK then folks, I’ve survived the Driving Lesson that might, due to the pessimistic mood I was in yesterday, have been my last. I have CP and quite severe brain damage. My brain doesn’t always tell my limbs to go in the right direction at the right time, and given the fact that driving places me in control of something that is moving quite fast, then I needed drastic action!!!

It’s an awful thing when you discover that Pride is preventing you from progressing you know. I didn’t want my Instructor to hear me taking my limbs through a verbal set of instructions, one after another, but it was the only way to get things done right in the correct order.

I had a much better lesson today because of the commentary I gave myself, and if this is the only way I can drive then so be it!!!

Do I do an Alan Green, a John Motson or develop my own style? It’s certainly something to think about!!!

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Oh My Poor Brain

You know I seem to always get to this stage when in driving lessons. I know what I have got to do, my brain passed the Theory Test along with the rest of me! Then why doesn’t my body do what my brain wants it to quick enough to drive safely, For the first time I’m seriously considering giving up this driving lark!

We’ll see how I feel after the lesson tomorrow…

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Brrrrmmm, Brrrrmmm

So, after 15 months of great back pain, I finally got behind the wheel of a car for a driving lesson today. I have to admit that I never thought I would drive again as sitting down and trying to control a moving vehicle was so painful. However, the addition of a Lodgeson’s Lollipop some new-found determination after all those hours of physio exercises, certainly helped.

The assessor at the Driver’s Centre at Cardiff said that Motability will make the infra-red secondary control I used today free of charge. I hope this is true, because I don’t have the £450 necessary to fit it myself unless I rob a bank, but then I’m not mobile enough to effect a good getaway!!!

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To Tell or Not to Tell… That is the Question

Read on Twitter today of a fellow individual individual who just happens to have a disability and is undergoing the should I/shouldn’t I tell a prospective date that I am disabled conundrum.

I’ve had difficulties in this area myself, including a backlash when I didn’t tell, but then again part of me says Why Should I??? Surely a person without a disability wouldn’t have to front up such a personal matter before even meeting a prospective partner?

My love and ex’s have agreed with me that I am much more than the sum of my failing palsyed  parts – it’s just a shame that some people can’t free themselves of the prejudice which is a greater disability than mine or the individual individual in question will ever be!!!

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Naughty But Nice

It was great to see a central storyline in BBC’s popular Saturday night hospital drama Casualty involving a person with Cerebral Palsy. Well done to Cara Readle for showing a person with Cerebral Palsy with dilemmas. Not only that, but a person with Cerebral Palsy who was fun loving but fallible because she drove while over the drink drive limit. I’m not celebrating the criminal offence but I am celebrating the inclusivity involved. Disability does not always mean a halo!!! Long may it continue….

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