by Richard Sleeman*

It seemed an impossible dream.

Three years after being diagnosed with MND, wheelchair bound and well into my 60s, I saw a TV ad one evening showing spectacular views of the Canadian Rocky Mountains. I’m going, I declared, to no-one there. The next day I ran the dumb notion past a few more sensible people than me and the answer was almost invariably the same. It can’t be done.

How would I survive a 15-hour flight from Sydney to Vancouver, a layover of some hours and then another flight to Calgary without being able to get up from an economy seat or airport wheelchair? That’s some 24 hours on my bum. On my own!

And even if I did arrive in one piece, I had no wheelchair there, no walking frame, no bathroom or bedroom aids. My dear friend Travis had an apartment in Calgary but with a shower over a bath and nowhere to sit or sleep I could safely get up from. And how was I to get around? It was a year or more since I’d been in a vehicle other than a wheelchair taxi. If we were to drive through the snow and mountains for days, I’d need to get up and down from Travis’ big red truck.

I’m a stubborn bugger though. I knew the negatives. I went looking for positives. Nurse Margie at Sydney’s Forefront clinic in Camperdown was adamant. “Go, and go now”, she said.

I bought a return ticket the next day.

NSW Health has released a new Information Booklet to help people understand and complete an Advance Care Directive in NSW. The Information Booklet outlines some key questions that people face when discussing Advance Care Directives, these include:

  • what is an Advance Care Directive?
  • why an Advance Care Directive is important?
  • how to prepare for making an Advance Care Directive
  • how to make an Advance Care Directive
  • when it applies and when is it valid.

In this package you will find an Advance Care Directive form to complete and an Information Booklet to help you complete your Advance Care Directive. More information here

What a wonderful roll up we had in Canberra for our Walk to d’Feet MND. Over 450 people turned out on a chilly but sunny Canberra morning to show their support for people living with MND. This year we were able to do the Walk around Lake Burley Griffin and what a great atmosphere we had as families and friends headed off around the Lake. It’s always a stunning sight watching that 'sea of blue with a purpose' as the walkers head off. A big thank you to Nigel Ah Wong from the ACT Brumbies who helped promote the Walk in the lead up to the Walk, and also led the Walk on the day.

A big thank you to Sophy Townsend who for the second year organised Run MND in support of individuals and families living with MND, and  for research. A group of 86 runners and walkers took part following the Sutherland 2 Surf route ending at Dunningham Park in Cronulla. The event raised $10,000 to support families with much needed equipment and support, as well as $10,000 for research. Thank you to everyone who participated and donated to this wonderful event! 


Day 38 and the finish of Bob's ride. Bob formally finished at The Niche in the grounds of QE11 Hospital in Perth. This centre is part of the Neurological Support Centre and houses most of the organisations who are involved in providing services and support for those with neurological conditions, including MND. Congratulations Bob on another mammoth effort raising funds and awareness for MND and Huntington's.

Subscribe to news and updates