Living with motor neuron disease
Building on memories
My husband Peter was very fit at 43, training hard for the ‘Bay In A Day’ bike ride. My way of gently showing I wasn’t getting enough attention was to button up every shirt after I had ironed them. Usually he would say, “Thank you for looking after me,” but this time something was wrong. Instead he said, “Honey, don’t do all the buttons up. I don’t seem to be able to undo them very well. My fingers feel clumsy.”
Checks with the doctor and spinal x-rays led to a neurologist who gave us the devastating news. Peter had motor neuron disease. We’d never heard of it. Just two weeks before Christmas we were told that, unlike most diseases, there was no cure and that we should go home and build on our memories. Peter had between one and four years to live.
The hardest part was telling our four children, aged between 9 and 15 years. It was so sickening to destroy our children’s secure world. There was nothing positive we could tell them.
Just eight months after his diagnosis we began to realise that Peter would not be here for the next Christmas. He already had difficulty breathing and he had a tube inserted to help feed him. He lost the use of his legs and he could only speak in a whisper.
It happened too quickly. Just 11 months from diagnosis and Peter was gone.
The awful thing was that while his body was deteriorating, Peter’s mind never once failed him. He knew what was happening to him.
Facing the loss of family is very real for any one with MND. Those who are left behind live on with many memories. The one who is leaving must face the loss of their loved ones, as well as their own life.
Story courtesy of the Motor Neuron Disease Association of Victoria.
The Brain
