Stories raise awareness of motor neurone disease

Stories raise awareness of motor neurone disease – MND Global Awareness Day

Father of three Neil Ladyman is not letting motor neurone disease stop him from living life to the full. Neil is sharing his experience of the progressive disease, which around 300 people in New Zealand have, to mark MND Global Awareness Day in New Zealand.

“Neil’s brave approach is an inspiration and his video stories help show the challenging but fulfilling lives people with this fatal disease can lead,” MND Association of New Zealand National Manager Ian Mathieson says.

Around 300 people are living with MND in New Zealand but hundreds of family members and friends – many of whom become carers – are also affected by MND which attacks motor neurones in the body. This eventually leads to wasting of the muscles, making it progressively harder to move limbs and causes difficulty with swallowing and breathing.

Neil is now in a wheelchair and uses a mask to help him breathe as his lung capacity is weak. However that doesn’t hold Neil back and he will be participating in a 10 kilometre “rolla-thon” as part of the Wellington marathon on June 23 to raise funds for MND.

Neil will be joined by up to five other participants, from across Wairarapa, Kapiti and Wellington, who also have MND to wheel around the waterfront as part of the Armstrong Motor Group 10km event. They will be joined by a team of supporters as part of ‘Mates motoring with MND’.

In his video Neil encourages people with MND to keep active, contact friends and get out of the house.

His wife Olivia says the couple have chosen to face Neil’s prognosis head-on, “There’s no point hiding and not discussing things because it’s not going to go away.”

She and Neil both believe in doing as much as they can together, and as family, to create memories and enjoy whatever time they have left together.

Meanwhile, South Island MND Association fieldworker Kate Metcalf – one of seven specialist fieldworkers nationwide – talks about how she supports her MND clients in another video to let people know more about the association’s free fieldwork service.

Kate says helping people with MND navigate the health system is a really important part of her job. “Quite often people who get MND are fit and healthy and have little idea about how it all fits together. I tend to be quite active in making sure people are linked into the right services at the right time.”

Living with MND is incredibly challenging, says Kate. This includes the “repeated grieving process”. “One day they can open a jar of jam and a few days later, due to deterioration, they may be unable to do the same simple task.

“If I can make their journey easier and less stressful, it’s very rewarding,” she says.

The MND awareness video series will be developed further to include the work of clinicians and researchers in New Zealand to help further educate people about MND and the work going on to better understand the disease, in the hope to find a cure.

Later in June the film, I am Breathing, about a young father who found out he was dying from MND just months after the birth of his son, will also be available to view on the association’s website, www.mnda.org.nz.

Cameras followed Neil Platt around his home in the last few months of his life to tell his remarkable story and raise awareness of MND.

"People living with MND around the country show great strength, courage and determination in fighting this most challenging disease," says Ian Mathieson who also discusses the work of the association in a separate video.

“We hope these videos will encourage more awareness of MND and urge people to watch them online.”

The videos are available at www.mnda.org.nz, or on YouTube: http://www.youtube.com/mndassocnz.

The Motor Neurone Disease Association of New Zealand is also urging people to show their support for people with MND by making a donation via its website: http://mnda.org.nz/

To support Mates motoring with MND as part of the the Armstrong Motor Group 10k event visit: http://www.givealittle.co.nz/event/ArmstrongMotorGroupWellington10km23June

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