He has described motor neurone disease (MND) as being like a ‘death sentence’. And now Colin Hardy is on a mission to raise awareness throughout Northumberland, and beyond, about the ‘horrendous’ condition.
The Berwick man lost his sister, Pauline Scott, to the disease. She died on Easter Monday, having been diagnosed on January 8.
He also has a neighbour who suffers from it, while a good friend was another victim of the fatal condition.
Colin is the county’s only representative of the MND Association, the national charity covering England, Wales and Northern Ireland which focuses on care, research and campaigning.
Using the charity’s awareness month campaign as a platform, he has been campaigning hard in June and hopes to establish a group – MND Association Northumberland – that can offer help and support to sufferers and their carers.
“There are not words to describe how bad MND is,” he said.
“The reason I’m so passionate is that some people think it is something you can work through. But there’s no cure. There are no tablets. There is no chemotherapy.
“It is a death sentence. It takes away the power to control your muscles. In varying stages, you lose the ability to walk, use your arms, to feed yourself, to swallow and to speak. In the end you lose the ability to breathe. It is a horrendous disease and is more common than people think. My sister said on three occasions that she wanted to die.”
Colin has had meetings with local politicians, including Sir Alan Beith and Anne-Marie Trevelyan. He also addressed Berwick Town Council on Monday and was pleased that councillors agreed to sign the MND charter.
But he says that more needs to be done, particularly to improve the package of support on offer in Northumberland.
He adds that the lack of awareness and understanding of the disease extends way beyond the general public. In his experience, many health professionals don’t know enough about it either.
“What people need is fast, definite support. Even down to bereavement benefits and tax forms, all these sort of things that you have to do. The group could be there to help.” To find out more, call Colin on 07584 148793 or email firstname.lastname@example.org