It is the courage of ordinary people faced with this condition that is perhaps the most memorable thing to me.
Born at the end of the Second World War, I benefited from a very good education and the increased opportunities available to women of my generation. I knew that when I retired it would not be enough to live my life only for myself. I wanted to give something back to a society that had been kind to me.
A friend of 30 years, Rex Cheetham, died of MND. It is not something you forget. Having seen how it affected him, it seemed that I could use the skills acquired in my life to help people and their families now who find themselves in the same situation.
As a secretary, I have the normal administrative responsibilities. However, I feel my main role is to keep people connected and informed. Having information is pointless unless it is shared. I talk to many people in this role, those with MND and their families, health and social care professionals and the wider community. If someone wants to contribute, has a good idea, or needs help, put them in touch with each other. You never know where it might lead.
I am still with the Association after six years because of the people I meet and work with. It is a very rewarding experience and enhances my own life and sense of self worth.
It is impossible to give a ‘most memorable moment’. There was the elation in realising last year that we had attracted just under 1,000 people to a garden open day, with tea in the Long Gallery at Englefield. It was the emotion experienced in seeing a group of people, some of whom had never met before, work their hearts out on the day. At the other end of the scale are very personal moments. One of our people living with MND submitted one of his paintings to the Christmas card competition. National office phoned his wife to say that he had won, but he had died a few days earlier, so would never know. He always said, apparently, that you only become famous when you die. It is the courage of ordinary people faced with this condition that is perhaps the most memorable thing to me.
I would recommend it to others for the reasons given above. My college motto was ‘Only connect’. It sounds facile, but it is true.