He lost control his tongue and mouth and therefore his ability to speak. This was very tough for him as it decreased his ability to communicate and be involved in everyday life. His still able to gesture and write notes. As the control of his hands and feet decreased the writing stopped but he was still able to tap out a few words on a tablet but he found this difficult and frustrating.
At this point he was unable to taste, chew and therefore eat solids or enjoy food. Liquid diet before progressing to a direct feeding tube. A constant fear of choking on his own saliva. He was starting to have falls and my mother had to be with him or have someone around at all times.
He couldn't wipe his own face or rear. He had to be showered. He could not communicate other than with a nod or shake of his head or a shrug. He was trapped in a shutting down body with an inevitable end coming. His life as he wanted (and any normal human being would want) was over but he had no way out.
It was never lost on him, as a farmer for a good part of his life, that if he had an animal that was suffering the same or similar physical and psychological ordeals they would be put down. He did not have this option and he had no opportunity end of life dignity, ie going out on his terms.
There was one exception - he could refuse to "eat". When the palliative care nurses came to pour more "food" into his feeding tube he sent them away. My father starved himself to death. It was his only legal option to die with dignity.
My father's last few months were awful for him. A proud man with a fully functioning mind but a body that was shutting down. On the farm he wouldn't have let his animals suffer like he had to.
This has to change. Support the End Of Life Choice Bill. Do not get confused between euthanasia and suicide.
They are very different things.
Any person with a terminal disease should have the basic human right to say enough is enough my life is complete, on their own terms.
Brendon Rope is the son of Don Rope, deceased by MND 1 January 2016. Views expressed here are the writer's and not those of Hawke's Bay Today.