MND NSW provides information, support and education for people living with motor neurone disease, their families, friends and carers in NSW, ACT, the Gold Coast and NT. We also provide information and education about motor neurone disease for health, community and residential care professionals.
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.
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!
Researchers from the School of Behavioural, Cognitive and Social Sciences at the University of New England are investigating the role of psychological flexibility on understanding and acceptance of PEG tubes and non-invasive ventilation (using a BiPAP machine) in people with Motor Neurone Disease (MND/ALS). If you are aged 18 years or over and have been diagnosed with MND/ALS (regardless of whether you have opted for one of these interventions), you are invited to participate in this study.
After our first night back in civilisation, it was a bit confusing to wake up in a bed, rather than a tent, and to use an ordinary toilet again! Another early start, up at 5am, ready to face and accept the challenge for the day by 6am. Before we could start our walking back at Machu Picchu, we first had to take the bus trip, this time in reverse of what we did yesterday afternoon.