My Wife Isla and I purchased a Fusion 40 catamaran for our retirement to live on board and go travelling. In 2012 and 2013 we travelled up and down the east coat between Lizard island in the north to Brisbane in the south.
August 2013 we were in Mackay Marina, I went to fill up two 20L Gerry cans of fuel and was carrying them back to the boat when I kept dropping the one in my left hand had to get a trolley to get them back to the boat. I didn’t know but this was the onset of MND.
Later that year heading down inside Fraser Island we were flying a spinnaker and it was time to pull it down, so I went forward to pull the sock down and it kept slipping through my left hand. I eventually got it down but it was frustrating. Another sign of MND.
On our return to Manly Marina December 2013 a few of our friends had mentioned that I had lost weight especially around the shoulders. I’ve made made an appointment with my GP for a general check up.
My GP Dr. Rosendahl sent a letter to Neurologist Dr. Noel Saines which read:
I am concerned because this man has signs that put Motor Neurone Disease as my provisional diagnosis. Can you fit him in urgently? Alternatively could you please suggest a colleague?
I went to see Dr. Noel Saines, he wanted to do further tests and booked me into the Wesley Hospital where I was in for 4 days. I had 2 MRI’s, lumbar puncture and nerve tests. Isla had been coming up to visit each day and I never felt sick, so I said don’t come in the morning. We were living on the boat in Manly at that time.
Mid morning Dr. Saines walked in and gave me the news I had MND.
The life expectancy is 2-4 years. He advised to put all my affairs in place by means wills, power of attorney, advanced health directive, and go out and enjoy life!
It was a bit sobering at the time and it took a little to get my head around it before I made the phone call to tell Isla. Isla came up to the hospital and I rang my daughter Sally, she was working in Brisbane at the time and together with our son she came to the hospital straight away.
Not a good day.