So far, my appeal has raised £20,000. Today, I realise what is important in life - and I know that if I have love and health, then I am rich.'
When the initial shock had subsided, I decided there were two ways to cope: either I could capitulate and resign myself to death, or I could use the short time left to me productively.
I did not sleep that night for sheer joy. I lay in bed smiling, saying: 'Lord, thank you.' I was a new man. I had been given a second chance at life.
I resolved to be positive and to treasure every moment. I also decided to set up a research fund into MND because I wanted to leave a legacy of hope.
People have asked whether I felt angry that Norma and I spent so much time suffering and worrying fruitlessly.
A little later, the professor invited Norma and myself to a medical seminar in Sheffield. We sat among the audience of two dozen doctors as she addressed them. The thrust of her speech was that sometimes symptoms could be misread.
* All schools have a governing body of some sort, though they have different names depending on the type of school and the country it is in.
I resolved to make a final heroic effort to raise funds for a research post into MND. I met fellow sufferers and found that consoling them helped me. When you listen to other people's problems, there is no time for self-pity.
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Meanwhile, my condition deteriorated. Strength was ebbing from my left hand and I could not open a cupboard or grasp a handle. Climbing the stairs was like getting to the top of Everest.
Donatins to Terry's Thumbs Up Appeal for research into MND may be sent to PO Box 2141, Dronfield S18 8WE.
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The late arrival of some delegates meant that only those who had travelled on Wednesday could avail of the invitation to visit Cherry Orchard , a Christian Brothers outreach programme for students who failed to engage with mainstream education in the City. My thanks goes to Br. Paul Hendrick and members of his community that provided such a worthwhile experience to our conference members.
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Professor Shaw examined me and said she was not certain I had MND. Her words barely registered - I did not allow myself any hope - but she sent me for a muscle biopsy in my thigh.
A child’s diabetes pen, their pump, or blood glucose meter must never be locked away from them.
will generally be made available to the school inside an insulin pen or a pump, rather than in its original container.
Every child with diabetes will need an IHP. Headteachers, school governors and responsible bodies should make sure each child has an IHP and that it is being carried out.
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Heads, school governors and responsible bodies should make sure their medical conditions policy includes clear procedures around medicine.
I was told the strength in my limbs would wane quickly and I would soon be unable to cope with stairs. The specialist advised us to consider moving to a bungalow. Quite soon, he said, I would be confined to a wheelchair.
The conference started with a gathering prayer followed by a welcome talk from Br. Dominic Sassi , the deputy Province Leader, who gave us a brief outline of the Congregation General Chapter in Nairobi in March as well as sharing a vision for the schools in England.
In August last year - four months after diagnosis - I returned to Charing Cross Hospital. My consultant said my mobility had reduced from 67 pc to 33 pc. He said I would need a wheelchair by Christmas.
The annual conference for Headteachers and Chairs of Governors for our Edmund Rice Schools, England took place this year in the Emmaus Retreat Centre, Swords, North Dublin. Over 40 members of our school staffs and governors together with some invited guests travelled from England and, despite an unforeseen security alert at the airport, all took up residence by lunchtime Thursday.
THE first signs of my illness had showed themselves two-and-a-half years ago. I'd recently retired as head of a school for handicapped children - a job I felt supremely privileged to do - but I'd always been fit, active and a keen sportsman.
For residential, overnight trips, the lead member of staff should meet with the child (if appropriate), the child's parents, your school’s trained members of staff and, at the very least, speak to the child’s diabetes specialist nurse to agree the support and care needed for them to take part.
A challenging presentation from Br. Moy Hitchen from Edmund Rice International, (ERI), Geneva on eco-justice followed which provided us with a great deal of current information as well as the work of ERI in this particular area of Human Rights and Advocacy.
The school should check insulin provided to the school is in date. It
The policy should recognise medical conditions can be life threatening, understand the impact it can have on a child’s ability to learn and make clear every child with a medical condition is different and should be treated as an individual.
A year ago, Terry Bott, 69, was diagnosed with motor neurone disease and told he had only a short time to live. Eight months later, having prepared for his death, he learned he had not got MND after all but polymyositis - a treatable condition.
We know you’ll be welcoming your bundle into the world with limitless love and attention, and we aim to do exactly the same with our range of new baby gifts.
When a school is informed that a child has been diagnosed with diabetes or will be joining the school the head should organise the initial meeting to agree the IHP. They will need to make sure the child’s parents, the child’s diabetes specialist nurse and all relevant members of staff are present. If it is appropriate, the child should also be present. The policy should state how quickly this is expected to happen.
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Professor Shaw told me I was suffering from polymyositis - a rare disease which causes inflammation of the muscles. The symptoms mimic so closely those of MND that they can easily be confused.
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My life might have continued like this - shadowed by my imminent death - were it not for a simple geographical fact. Because I was finding the journey to London increasingly difficult, my consultant suggested I transfer to the Hallamshire Hospital in Sheffield.
He told me MND was a terrible illness but a kind death, and that I would probably fade away quietly in my sleep.
If no members of staff volunteer to be trained then you will need to employ members of staff who are prepared to be trained.
Heads, school governors and responsible bodies should make sure that no child is excluded from any part of school life because of their diabetes. This includes making sure they are able to take part in PE, extra-curricular activities, school trips and residential trips.
I came home and it seemed so final. The MND was taking hold. I could not control my movements and I kept falling.
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