Thank you and congratulations to the students involved in this wonderful project at Pittwater House School. What do you get when you bring together 14 students aged between 10-12 years of age to discuss business - the Pittwater House ‘Little Entrepreneurs Club’. Over their lunchbreaks, this savvy group formed a company called LEAFY and formulated their product - a series of brightly coloured wrap bands.

Thank you to Anne Pearson and the Tathra Beach Women’s Bowling Club who held a very successful Charity Day in June with the proceeds to be donated to MND NSW. The photo (left) shows Anne's daughter Louise Pearson, who has been living with MND for ten years, surrounded by bowlers from Tathra Beach, Merimbula, Tura Beach and Eden Bowling Clubs who took part in the event.

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.

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