When you are hoping for a tumour diagnosis or cancer over a diagnosis for Motor Neurone Disease (MND) you know the situation isn’t good.
But that was the case for Chontelle Shore and her family when her husband was diagnosed with the disease in November 2015.
“When we were at the doctor’s and talking about the situation we were hoping for a tumour over MND, but we knew the outcome was not going to be good either way,” Ms Shore said.
“Michael was diagnosed in November 2015 and from diagnosis to the end, it was 20 months.
“The rapid progression of the disease is horrendous and I would wake up every day hoping it was all a nightmare.”
Ms Shore said before Michael’s diagnosis she really had no idea about the realities of living with, or caring for, someone with MND.
“Of course I had heard the name MND but I assumed the worst that would happen would be confinement to a wheelchair, but that is simply not the case,” she said.
“Very quickly after the diagnosis Michael lost the ability to eat, talk, walk and swallow and then he died 20 months later.
“It is horrific really to watch someone you love deteriorate so quickly and we kept him at home until the end so we cared for him 24/7.
“On the positive side my four children and I really bonded in unimaginable ways looking after Michael.
“We did also have a lot of help from the local palliative care unit and MND NSW but it was hard and challenging the whole way through.”
Read more: A mass of support for MND walk 2017
According to the Australian Institute of Health and Welfare, in 2015, 758 people with MND died compared with 592 people in 2001. The cause of this increase is mostly unknown.
Ms Shore is an advocate for the Walk to d’Feet MND which is taking place in Port Macquarie on September 16 from Westport Park to Town Beach and back. The Walk is approximately 5.5km and is wheelchair, stroller and dogs on lead friendly.
“We have been participating in the walk for the last three years; but it was only the first year Michael was able to be a part of it as we want not around the second year.
“The day of the first walk it was pouring with rain and I still remember the sheer joy on his face as we pushed his wheelchair through the mud just being a part of the walk with everyone else.
“The second year the walk was hard but it was a nice event that we were able to remember him publicly and that will be the same this time around.”
MND Australia said there are more than 2000 people living with MND in Australia and approximately 58 percent of people who are diagnosed are under the age of 65.
They also say that for every person diagnosed with MND it is estimated that a further 14 members of their family and their friends will live with the impacts of MND forever.
Ms Shore also said it was important the whole community comes out in support of MND research.
“More and more people are being diagnosed with MND and it can happen to anyone so please come out and support us and help us raise more money for MND NSW so that we can help find a cure.”
Registration fees start from $8 for children to $40 for adult registrations on the day.
To register for the walk before the day or for more information head to the MND NSW website.