Imagine the feeling of your whole body slowly shutting down, one-by-one with your limbs, the ability to speak, swallow and breathe, all while your mind remains intact.
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For those with motor neuron disease (MND), this is their reality.
Pamela Harvey, 69, was diagnosed with MND in September last year but her zest for life is something to be marvelled at.
Since her diagnosis, Ms Harvey has lost the power to walk independently and has lost some ability in her left hand.
She described her diagnosis as a "bugger moment" but is determined to "get on with it."
Ms Harvey said MND required a continual lifestyle adjustment, as every month some sufferers lose the ability to do something they could do the month before.
"Your horizons close," she said.
"I cannot see myself getting in a plane anymore which I was able to do in January, February and the beginning of March.
"You do move on, you have to move on."
This Sunday is MND Global Awareness day and to mark this the Motor Neurone Disease Association of NSW will be holding their annual Walk to d'Feet MND in Canberra.
Ms Harvey cannot attend the walk but she will be talking at Parliament House on Monday to various parliamentarians and others involved with MND.
Ms Harvey spends much of her time socialising and keeping her mind busy.
"I reckon mental stimulation is a bloody good idea," she said.
"I love reading, I love playing on the internet.
"I have lots of friends to email and lots of friends to ring and family are wonderful but there's a certain limitation to what you can do."
Ms Harvey described her friends as lifesavers and although she cannot attend the walk many of her friends will be there in her honour.
"Friends rallied around and I had continual friends from all over the place," she said.
"It's just so good for me that personal contact and chatting."
MND can only be diagnosed through a process of elimination, meaning it can be a rather arduous process.
Ms Harvey's symptoms appeared four years ago but at first they were attributed to back problems and then a brain tumour.
It is estimated there are 1900 Australians living with MND and on average two people die from the disease each day. There is no known cure.
Ms Harvey is hopeful about the future research into MND and believes events such as the walk to d'Feet MND are important in raising awareness and funding.
"One of the problems is that the population [of MND sufferers] keeps on rolling over, so it's a bit hard to do longitudinal studies," she said.
"Things like walk to d'Feet and MND awareness day are a consciousness raising process which I think is very important."
The 5 kilometre walk to d'Feet will begin at Peace Park, Lake Burley Griffin at 10am on Sunday.
