Get involved > Spotlight on MND > July 2016 > My best friend, my hero, my father

Spotlight on MND


My best friend, my hero, my father

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.




Monica Hayes
Thank you this story and expression of love and loss. it reflects my current journey with similar onset and progression of disease. Also share background of being fit healthy yoga practicing.... Not seeking a cure but rather how can we prevent onset of MND.
Keep up your awareness raising- well done!
20/07/2016 9:57:41 PM

I can only try to understand how you are feeling & coping .my husband has Mnd & frontal temporal dementia have had after for 9 years very slow then 2012 was tested for the newest gene ( as in ftd)
It's slowl but it's their .
20/07/2016 8:49:00 PM

I completely understand your pain, I mirror what you have experienced .... Although our healthy strong dad lost his fight after only 16 months at the young age of 44.
It happened to be the day after my 16th birthday.
I'm now faced with the question of discovering if I now carry the gene, and more so if I have passed on to my beautiful Daughters aged 8 & 5 ....
20/07/2016 8:29:08 PM

That is exactly what you need to do. I have got a slow type and am fighting and fundraising. I have given up work to enjoy my life and I too hope it might be wrong but think it's right diagnosis just slow. Please keep fighting in your daddy name for a cure and thanks from us all
20/07/2016 7:47:17 PM

Jeanelle Slater
My deepest sympathies on the loss of your Dad. I lost my mum to MND in April 2012. She battled for 8 years. She was only 63. It is a cruel disease but hopefully with people like you it won't be too long before we see some progress with some treatments and ultimately a cure.
20/07/2016 5:38:05 PM

Im crying right now!! It's been 5 years since I lost my Dad next week. He was 56 years old. 5 years of grandchildren he never got to meet! 5 years of family trips and times I've needed to call him to ask how to something that were taken. Your story mimics mine almost as if I was writing this myself. Dad was also 45kg! He fought for just over two years and passed away, while he could still just walk. He was a smoker but his lungs were clear and he ran 8 a day in his lunch break. I was 32 and my baby sisters were 30 and 28. Dad got to hold his 2 week old grandson but one time. He used all his strength to walk my sister down the isle without his walker or wheelchair. I too Googled MND, when he fell off the roof of a camping shack he was building for us.He left behind his high school sweet heart of 35 years, Who has and will never be the same again! The facilities he attended in Victoria were depressing... As if the illness wasn't enough! . They were run down and the medical rooms were down a long hallway which he was forced to walk along. Ironically Dad worked with petroleum and soon after his death both of my neighbours dads also passed away with the same illness. Statistically that must be impossible. They too both worked in Petrolium at some stage in their lives and after this I am convinced there has to be some link... I'm convinced of it. Thanks for sharing your story
20/07/2016 5:32:29 PM


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