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And he used to be such a nice, quiet boy

Turning Cartwheels in my mind

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Facebook For Good Entry from Niall Hammond on Vimeo.

Imagine being trapped physically within the confines of your own body, held down by an invisible hand. Steadily, inevitably becoming unable to move or speak.

Such is the fate of those coping with Motor Neuron Disease., approximately 7 out of 100,000 people, or 5000 alone in the United Kingdom.

It does not affect the senses, or the intellect. You can still see, hear, smell and feel, and your brain will remain as sharp and focused as always. Instead it locks the person away inside their own body.

The most famous sufferer of Motor Neuron Disease is Professor Stephen Hawkins, who has, in spite of his illness, produced some of the most spectacular thesis of the modern age. He is a rare case, in that he has survived more than 35 years with the disease. Normally it is fatal within 3 – 5 years.

Strangely, twice as many men are affected as women. MND attacks the upper and lower motor neurons, leading to wasting of muscles, loss of mobility, and an inability to speak or swallow. It is not something that can be directly diagnosed, it is more a process of elimination.

Sarah Ezekiel was diagnosed with the disease in 2000, shortly before she gave birth to her second child, Eric. Within a matter of months she started to lose the movement in her arms and her speech began to deteriorate. Furthermore it ended her marriage and left her needing 24 hour care.

However none of this seems to stop her. Most recently she held a video conference for Coventry and Staffordshire Universities. The questions ranged from the technology she uses to communicate, to what bank she was with.

Her current method of communication with the outside world is her laptop. Indeed over the last eight years Sarah has become very adept with communication technology. She had a voice synthesiser with a Southern American accent – have a nice day y’awl! Nowadays she uses a chin switch to operate it, which has been causing strain on her jaw and neck muscles.

Organising and managing her own life is becoming increasingly difficult. Most of her carers are paid by cheque, and the facility of paying this is slowly being replaced by chip and pin.

Shopping is a problem, as she cannot use her arms she can neither pay or pack, so she needs her carer’s assistance for that.

Most recently she has been filming an advert to raise awareness of MND, and it is due to be on our screens by autumn.
Facebook For Good Entry from Niall Hammond on Vimeo.

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Written by Nick Gilmartin

August 12, 2008 at 12:28 pm

One Response

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  1. Reblogged this on Raising Awareness of Motor Neurone Disease and commented:
    Very good portrayal of a fascinating yet horrendous story

    Laura Yell - Motor Neurone Disease

    November 24, 2012 at 11:35 pm


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