What would you do if you were told you had 27 months to live?
In October 2010 Scott was diagnosed with Motor Neurone Disease (MND) – an insidious disease for which there is no known cause, and no cure.
Put very simply your body progressively stops working over a relatively short period of time.
I think most of us have wondered what ‘that’ moment in the doctor’s surgery might feel like when you’re given some truly terrible news. Here’s how Scott very eloquently describes it.
“Obviously it was an incredible shock. I honestly had no idea there was anything seriously wrong with me.
“At the time I was pretty fit, I was running three times a week and feeling really good apart from a bit of weakness in my right hand. I had the appointment with the neurologist first thing on a Friday morning and I was dressed ready to go to work straight afterwards.
We did about 30 minutes of tests, and then he sat me down and said ‘I believe you have Motor Neurone Disease. There is no cure and your life expectancy is three to five yrs’.”
Scott’s immediate thoughts were of his wife Sarah and his two young children.
“They need me. It’s my job to provide for my family. Those first thoughts are pretty powerful in such a situation. It all happened so fast.
“I was obviously in no state to go to work. I caught a bus home and sat in a nearby park for an hour and pretty much just cried.
My wife wasn’t expecting me home and when I walked in she immediately asked what was wrong. I basically collapsed into her arms and had to tell her I was dying.”
Sixteen months on from this devastating day, Scott says he “feels good, all things considered” and largely credits this to his amazing wife Sarah and his kids keeping him positive.
He is only now entering a stage where he needs assistance with daily living, such as writing, doing buttons up, using a knife and fork etc. Scott insists that there are a lot of people out there who are far worse off than him.
Scott reflects on his life as a blessed one, and through the overwhelming support from his wife, kids, work colleagues and friends, he is determined help others while he can.
Scott assumed there would be millions of dollars of research behind MND and that there would be a basic level of support services available for such a devastating and terminal disease, but learned the reality is quite the opposite.
There is a MND association in each state and they are doing the best they could on limited resources but there was no Foundation to support people with practical support and counselling.