The Star: April 18, 2024

Thursday April 18 2024 The Star
Latest Canterbury news at starnews.co.nz
NEWS 5
of debilitating terminal disease
The petition has drawn 1187
signatures since it was launched
in November; Barton hopes for a
greater response before it is lodged
with Parliament.
Barton’s campaign has been
backed by Motor Neurone New
Zealand Charitable Trust.
“We very much support him
and agree the MND Registry
would be better utilised if it
included all possible information
from 100 per cent of those who
suffer MND in New Zealand,”
said interim chief executive Mark
Leggett.
Filipino-born Ally was 34 when
she was diagnosed, so she is one of
the youngest MND cases in New
Zealand.
Her symptoms started with a
twitch in her right hand about
six months after their apartment
was fumigated three times in six
weeks, leading Barton to believe
chemicals were responsible.
The couple visited San Francisco
last August, where changes were
noticeable at either end of the trip.
“When we left she could squeeze
the brakes on her walker. She
couldn’t by the time we came
back,” Barton said.
Eating has also become an issue.
“She was able to eat and feed
herself, now she’s using a robot.
It’s got buttons so it scoops up the
TRAVELLING: Paul and Ally Barton paid a visit to San
Francisco in August, 2023.
food and gives it to her.”
Barton appreciated the support
the couple, who have no family
members in New Zealand, have
received since they settled in
Woolston in October 2021.
The couple left Australia because
Ally was not eligible for support.
They have been able to modify
their house to make it more
accessible, while Ally has access
to a wheelchair ($25,000), a grid
pad ($16,000) to communicate
with her eyes and a van to make
transportation easier.
Last month a $10,000 PEG
(Percutaneous Endoscopic
Gastrostomy) feeding tube was
inserted in her stomach.
Yet, Barton still yearns for the
ministry to put more resources
into studying the causes of MND.
“How it feels from our
perspective is: ‘Here’s some
equipment, go away and die’,” he
said.
“Their mentality is we’ll get it
back in two years anyway.
“That’s what it feels like. I’m sick
of being told ‘We don’t know why’
you get MND.”
• The petition can be
signed via theQR code or
at tinyurl.com/4pvfcnvh
Motor Neurone Disease
• Motor neurone disease (MND) is a fatal, rapidly
progressing neurodegenerative disease that robs people
of their ability to move, talk and eventually breathe.
• MND is the name given to a group of closely related
diseases in which the nerve cells (neurons) controlling
muscle movement progressively deteriorate and die.
• There is currently no effective treatment and no known
cure.
• The causes are unknown. Worldwide research includes
studies on exposure to viruses, certain toxins/chemicals
and genetic factors.
• An average of 144 Kiwis are diagnosed with MND every
year – about three in every 100,000. Internationally, the
incidence is two in every 100,000.
• About 400 Kiwis live with MND annually. Each week
MND causes the death of two people.
• MND affects adults at any age but most diagnosed are
over 40; the highest incidence occurs between 50-70.
Slightly more men than women get MND.
• Average life expectancy is 3-5 years from diagnosis.
• Five to 10 per cent of sufferers live for a decade or more.
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