Information needed to combat MND ignorance

This week is Motor Neurone Disease (MND) awareness week. Chief reporter Stuart Whitaker had the chance to talk to three people touched by MND, a disease about which, they say, there still seems to be a lack of knowledge among the general population and the medical profession.

Like many of us, Gay Terry dreams of what she would do if she won the Lotto millions.
It is unlikely that Gay's dreams would be the same as those of most of us.
"If I won Lotto," she says, "I would build a unit where people with motor neurone disease can be looked after properly - I am not an old person."
She knows exactly what she is talking about.
Gay has MND - a condition, or rather a group of conditions - in which the nerve cells controlling muscles are destroyed. With no stimulus the muscles gradually weaken and waste away. There is no cure.
A hair lands on her nose, and Gay can't brush it away, her ear itches, and she can't scratch it. She can't turn the pages of a book, can't feed herself and is physically, totally dependent on other people.
She is currently at Bethlehem Views and, while she is getting the best possible care, she does not believe she is in the right place for someone with Motor Neurone Disease.
"I advise anyone to get their family to look after them," she says, "I am not in the right place."
It isn't a criticism of where she is, more an indictment on the lack of knowledge of the disease and its effects.
Gay's very good friend Geoff Bayly, whose son Duncan in Melbourne also has MND, says it gets to the stage where the patient needs "someone to be your hands and legs all the time".
"There is nowhere where the care is totally appropriate, because people aren't aware of it," says Jan Fraser McKenzie whose husband died from MND and who is chairperson of the Tauranga branch of the Motor Neurone Disease Association.
But the lack of knowledge and awareness of MND is a recurring theme - and as a result, as Gay found, even being diagnosed isn't a given.
"It is so difficult to get a diagnosis, because people are not taking symptoms seriously," says Jan.
It took 18 months from Gay first thinking there might be a problem to being diagnosed.
"I never want anyone to be treated the way I have," she says. "It is important that people are aware of this."
Gay can trace her deterioration to a day in September 2008.
"I was in Spring St and I had to drag my leg down to the car. It just wouldn't work."
But she was then able to drive to the Mount and walk around Mauao.
She didn't realise it at the time, but it was the first recognisable sign of what was to come.
A couple of months later her leg did the same thing and it was then that she first sought medial advice.
Over time she was told by doctors there was nothing wrong with her, that she had mercury poisoning, that medicine could not help her and that it was psychosomatic.
Even when she begged for help, saying she should be treated with respect and dignity, she did not feel she was given the hearing she should have.
"Because Gay is a fairly placid person, I don't think people took her seriously enough," says Geoff.
Even with an MRI scan in March 2009, it was another 11 months before the disease was diagnosed.
By May 2009 Gay was no longer able to work. "When just three months earlier we had walked up to the top of the Mount and around the Blue Lake," says Geoff.
Eventually Gay found herself at the door of Dr Nick Hanna.
"By this stage I needed a walking stick to get around - I nearly fell over walking into his office. I told him I am not a liar, I am not dishonest - this is for real. 'I can see that', he said."
It was after what she describes as a series of "horrific tests" that she was finally diagnosed - in February last year.
"That's how hard it is to have it diagnosed," says Geoff.
When she was diagnosed, it was a month before she could tell anyone - especially Geoff.
"How can you tell your best mate, who had a son with it?"
Geoff's son Duncan was at least spared much of the anguish Gay had to put up with. His first noticeable symptom was a lack of reaction from his fingers when he wanted them to do something.
"He rang me from Amsterdam and asked me what he should do - I told him he needed to go and see someone," says Geoff.
Geoff, Jan and Gay have formed a close-knit little group of people who have or are affected by the disease.
They all believe more can and should be done for those who have it.
Gay says she wants people with MND treated with respect and dignity.
"There is nothing wrong with our brains," she says. "People have no idea, we've got to educate people."
"People need a lot more care than is given," says Jan.
"We need trained carers to be able to assist because primary care is eventually needed day and night, 24 hours a day, and all too often primary care is given without expertise.
"Fortunately I had some nursing experience but I still didn't have anyone to help.
"But that's part of the overall lack of knowledge about MND and it is a result of the relatively small number of people who have this neurological disease.
"It is too easy for GPs to shrug it off as something they will never come across in their careers. It is essential they study MND when training. Often vague symptoms are often significant in MND."
At any one time there are about 250 people with MND in New Zealand with around 80 cases diagnosed each year.
A drug, Rilutek, has been shown to slow down the process. It is subsidised in Australia and available to Duncan. However, there is no such subsidy in New Zealand. Duncan has written to health minister Tony Ryall on the issue.
The drug gives hope to sufferers as it has the potential to prolong life so there is a chance that a cure will be found.
"What right have they to take away someone's hope for life?" asks Gay.
Duncan has also done two sponsored bike rides - one from Amsterdam to London and the other in the opposite direction - in which his dad also took part - and organised several fundraising events raising around $175,000 toward research.
Jan says that as well as raising awareness of the disease, this week is a time to "acknowledge all those throughout the world, who have dedicated themselves to doing something to help when they were struck by motor neurone disease".
"There have been many heroes close to home also, who have raised the awareness and raised large amounts of money to help with ongoing research into the causes of MND - and to help find a cure. And there are the health professionals who become part of the team for those living with MND, many of whom give support and encouragement far beyond the call of duty to their clients and their families.
"We pay great tribute to the courage shown by all, as they travel the MND journey."