On 24 April 2016, I lost my best friend and my hero, my amazing father David Robinson who fought a horrific battle for 4 years with Motor Neurone Disease. He was just 59 years old and weighed approximately 45 kg at the end.
My father did not drink or smoke. He was highly active, performed weight training, swimming and skipping every morning, as well as Falun Gong, tai chi and meditation. He was fit, maintained a healthy weight and enjoyed a balanced diet, and was rarely sick. He had an infectious and delightful sense of humour, and an enormous zest and enthusiasm for life, which is how I will always remember him.
In 2012, we took a family holiday to New Zealand. At this time, he complained of a developing impediment, he believed his speech was slurring. However initially it was unnoticeable to anyone but himself. Over the following months, the slurring of his speech and difficulties swallowing increased. He began experiencing difficulties holding objects and using his hands due to weakness of the hand muscles. He also experienced weakness of the tongue and throat muscles, as well as cramps and muscle twitching.
He visited a doctor and was referred to a neurologist who diagnosed him with bulbar onset Motor Neurone Disease in early 2013. I remember Googling “Motor Neurone Disease” and reading about it for the first time on Wikipedia. At the time it did not even feel real. My father was determined for the diagnosis to be incorrect, a mistake, and he fought relentlessly.
As the disease rapidly progressed, I watched my determined father struggle to the point of exhaustion every single day to attempt to do all of the normal everyday activities that we usually take for granted, such as ingesting solids and liquids, going to the bathroom, showering, dressing, communicating, walking and even holding up his head to see. It is a truly devastating and undignified way for anybody to live, and it is incredibly painful to watch a loved one suffer this way. My father was so brave, he kept his spirit and amazing sense of humour right until the very end.
In April this year I said my final goodbye as we laid him to rest at peace at last. However there is an agonising, unfillable void left in all of my family’s hearts, as he was taken from us far too young and far too soon, and we had so much more love and happy memories to share with him.
My selfless father fought for my family for 4 long years. And now it is my turn to fight for him, to fight for a cure. I am currently spearheading an initiative to raise awareness for Motor Neurone Disease. I recently held a morning tea event “Drink Tea for MND” in Noosa on 28 June 2016, with all proceeds going directly to the Motor Neurone Disease Association of Queensland. I have been published in the Sunshine Coast Daily, The Noosa News and I have appeared by radio on 96.1 Zinc FM to discuss Motor Neurone Disease. A cure is out there, and I strongly believe that together we can change the future of Motor Neurone Disease. Rest in peace, Daddy. I will love you always.
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