Life With MND
Lesley
My brother John was diagnosed with MND on 1 March 2001 at the age of 53.
His symptoms had been gathering over the previous two years. Finally some of them, including emotional lability and speech/swallowing problems were tied together with one big black ribbon...MND.
"He adapted to the changes MND demanded of him with humour, always anticipating the need for change long before anyone else. "
But all was not doom and gloom: John may have been terminally ill but he was not going to miss a day of life as long as his deteriorating health allowed him to enjoy his favourite activities such as exploring Milton Keynes, watching films, and both listening to and creating music.
He embarked on a program of recording and archiving many of the songs he had written and changed his composing technique from guitar and tape recorder-based to keyboard and computer-driven.
He adapted to the changes MND demanded of him with humour, always anticipating the need for change long before anyone else. For example, he grew used to a wheelchair as a piece of furniture long before he had to use one full-time, he had a PEG tube fitted before having one became an emergency requirement and he had already made the huge mental leap needed to accept full-time care when he finally told us that he could no longer manage with twice-daily carer visits.
Finally, though, he could no longer endure the loss of dignity which he felt full-time care imposed on him: John had been a single man most of his life and such an intrusion into his privacy did not come easily to him. He chose to end his life through assisted suicide and gave a party to say goodbye to some of his friends. Four of us, including his girlfriend, were with him when he died shortly afterwards.
