Living with MND
Neale Daniher, AFL great now fighting Motor Neurone Disease (MND), is ready to open up further about the disease and disability. MND is a swift and merciless disease, and Neale is matter of fact about what has changed for him physically in that time.
‘I’m fortunate, my progression is quite slow. There hasn’t been a great deal of physical change over the last six months. I am weaker in my upper body and arms, but even though it is obvious to me it is not easily detectable to those who see me often. I’m lucky, my legs are still good’.
MND is not just one disease – it is a group of diseases that effect the motor neurones that control muscle movement. Some are more progressive than others, and symptoms, progression and survival time vary. Neale acknowledges this, and yet remains positive. He has the type of MND called progressive lower motor neurone disorder, which in his case is moving relatively slowly.
This joke has weight: as we speak in his living room, Neale’s wife Jan is raking the lawn in their backyard.‘They tell me progression tends to be relatively consistent, and mine is slow. And it is now possible to live beyond the average life expectancy, which is between two and five years. The upside is, with MND I get a free pass on nearly all of the family chores’.
Despite the joke, MND hasn’t slowed Neale down.
Fighting ‘the Beast’ MND
‘I personalise the disease, I call it the Beast’.
In early 2015 Neale became the Patron and Vice-President of the Cure for MND Foundation. He joined Chairman Dr Ian Davis, who also lives with MND, as well as Patrick Cunningham (whose wife Angela has MND) and Angus Twopenny.
They didn’t start, small, successfully pulling off the largest fundraiser for MND ever in Australia. The Big Freeze – where sporting greats and commentators plunged into a container of iced freezing water in front of the MCG crowd and live on TV – was to raise $250,000. They smashed this target, raising $2,411,800 since June.
By bringing in the AFL community and packing out the MCG, Cure MND has done what no one else could: they made ‘the Beast’ relevant. Neale gave it a face, a name, and got thousands of people doing something about it. This is no small feat. MND is not an easy disease to talk about: it is not easy to explain, it does not lend itself to a pink ribbon or yellow daffodil, and it kills all it touches.
And there is also Neale’s work with Brewmanity, a not-for-profit that donates 10 per cent of its profit from hand-crafted beers to the Cure for MND Foundation.Neale hasn’t stopped with the AFL community. In October he toured Victoria for Daniher’s Drive – a four day fundraising extravaganza that took him – as well as 200 people in 60 cars – along the Great Ocean Road to Warrnambool, through the Grampians, and on to Bendigo, the Murray River and Albury.
On Saturday 28 November the Cure for MND Foundation held its inaugural Gala Dinner, headlined by Kate Ceberano with an estimated $150,000 raised.
The goal is clear: more money for more MND research.
That is because one in 180 deaths (yes, you read that right: one in 180 deaths) in Australia are due to MND. That means you are likely to know someone who is diagnosed with and will likely die from MND.
Making the funding pie bigger for all
Neale and Cure for MND are all about making the funding pie bigger. Cure for MND has raised over $4 million this year (including what was raised through the Big Freeze). Given the voluntary basis of the organisation, the majority of funds raised go towards making the pie bigger – they are invested in researching the cure and caring for those already living with MND.
Neale is thankful the Commonwealth is increasing the total funding available through the National Health and Medical Research Council (NHMRC). He is the first to acknowledge there are plenty of diseases and conditions requiring urgent medical research. But he is adamant it is not enough.
In late November the Federal Government announced it is increasing funding for MND research in 2016 to $2.5 million, up from $2.3 million in 2015. But while this is an increase in dollar terms, it represents a smaller slice relative to the overall size of the pie. This is because in 2015, MND research received $2.3 million of the $420 million invested in medical research (around 0.5 per cent). In 2016, it will receive $2.5 million of the $760 million invested (around 0.3 per cent).
‘We now get less than half of one per cent of the funding distributed. If we are to beat the Beast, we need more than that. And that is why we created the Freeze Army. In just one year, we have almost doubled what is available to fight the Beast’.
In late November, Cure for MND donated $1.75 million to MND Australia. Combined with the $3.32 million contributed by MND Research Institute of Australia, this brings the total available for MND research to $5.07 million – greater than it has ever been.
On top of the $1.75 million for research, Cure MND is making available $1 million to Neuroscience Australia and similar Australian organisations to assist Australian trials of therapeutic drugs. The goal is to find a treatment that may slow down the Beast. This is a way to bring real hope to those living with MND, as any research success story will take years to reach the market.
Neale argues that more funding is needed to care and support those living with MND now. And by investing in therapeutic trials (most of which occur overseas with few in Australia), Cure MND is funding Australia’s best and brightest researchers and clinicians. However, funding trials is an expensive endeavour. More funding is needed to beat the Beast.
MND in Australia
Approximately 400,000 people live with MND around the world, with around 1,900 in Australia.
MND may be diagnosed at any age, although it most often effects people between 50 and 60 years of age, with more men diagnosed than women.
Each day in Australia an average of two people are diagnosed with MND and two people die from the disease.
The average life expectancy of someone with MND from diagnosis is between two and five years.
It cost an estimated $300,000 to care for someone with MND per year.
MND is also known as Amyotrophic Lateral Sclerosis (ALS, known best in relation to the Ice Bucket Challenge).
CURE FOR MND FOUNDATION
The Cure for MND Foundation is a 100 per cent not-for-profit foundation. The goal of the Foundation is to live in world free from MND. The aims are to:
- To cure: By funding the best and brightest research within Australia to identify potential treatments.
- To care: By providing vital equipment and services to those living with MND in order that they may maintain independence, dignity, and an improved quality of life.
- To make aware: By increasing the public profile of the disease to encourage the Australian community, as well as the government and pharmaceutical companies to join the fight against MND.
Playing the numbers game
MND has a numbers problem.
Each day in Australia, an average of two people are diagnosed with MND. The catch is, an average of two people die from the disease each day.
The total number of those living with the disease isn’t going up, and this presents a challenge. How to make a convincing case to increase government funding?
Cure for MND has reached new heights attracting voluntary funding and donations, but securing greater government funding requires a different set of numbers: plenty of supportive voters or a killer business case, and preferably both.
I ask Neale how he feels about other successful campaigns to reduce and avoid deaths. For example, the Victorian Towards Zero campaign to reduce deaths on our roads from 249 in 2014 to zero, and national efforts to tackle lifestyle diseases such as Type 2 Diabetes.
Neale’s response is a reminder that he knows the public and remains a gentleman. ‘I don’t go down the road of comparisons. I’m not the only one suffering, and I don’t think people should only focus on my disease. That is why we are trying to build a larger pie – not take more from a smaller pie’.
But Neale does express his frustration.
He admits to being frustrated by the amount of waste in the health system, that appears to be built into the health system. He refers to the recent 4-Corners episode that investigated the way doctors feel pressured to over-diagnosis, saying ‘we waste billions through mismanagement and over-diagnosis, and then only give $2.5 million – only 0.3 per cent of available funding – to MND’.
And he admits being frustrated that preventable lifestyle diseases attract so much more research funding (though people can take measures to prevent them) than diseases that have no known cause, like MND. People don’t bring MND upon themselves, and when it strikes – and it can and does strike anyone – there are few measures they can take.
Neale’s point is that MND is here, it strikes one in every 180 people, and it kills. More funds are needed.
Thinking about the end
The majority of MND cases are sporadic, with no known cause. This means there is no identifiable reason why Neale’s body is failing him. The only thing Neale and his family can be sure of is that his body will fail.
‘I have sporadic MND – not the genetic kind. That gets my parents off the hook. And while I grew up on the farm, I left when I was still young and the doctors think it is doubtful my MND has anything to do with exposure to pesticides or toxins on the land. Until the doctors or researchers find out what causes MND, I’m not interested in speculating how I got it’.
‘I’m not at the stage where my wife has to cut up my food yet, although I’ll be fine with that when that day comes. But things are changing. It takes me longer to do things, and some things are becoming more difficult. I get others to tie up my shoes. And because my hands don’t work well anymore, I worry about some times and places. What if I were in a public toilet and couldn’t unlock the door?’
There can be little comfort in the fact that he has the slow-moving form of MND, for ‘slow-moving’ is a relative term. Stephen Hawking’s slow-moving ALS remains the outlier: most diagnosed with any form of the disease die between two and five years from diagnosis.
Neale takes Rilutek. It is the only drug currently available to have any impact on the course of MND. It may slow disease progression, and may prolong the average life of someone with MND by two to three months. But it does not come close to changing the end result. Neale’s life will end before his time. Neale is hopeful that the therapeutic trials that Cure MND are looking to support in 2016 may provide some new options for the treatment of MND.
I ask Neale his thoughts on Andrew Denton’s recent public commentary and current podcast series ‘Better off Dead’, where he explores the way we approach end-of-life care, assisted suicide and dying in Australia.
‘I saw Andrew Denton on Q&A. It was a good discussion. I’m not committed either way. I find that with these types of issues, the more they are brought out into the open and all arguments are presented, the better off society is’.
I ask about the practical realities that come with a diagnosis of MND. Wills. The different types of Power of Attorney. Decisions on end-of-life care. Neale looks less than impressed with these questions.
‘People think about death differently, and it is normal and natural to feel sad or sorry. But I think I am more emotionally fit if I focus on the short term. People who focus only on future outcomes miss the many opportunities for joy each day presents. I prefer to splash people today with hope and happiness. It is the way I go about things’.
Still, Neale answers my question forthrightly.
‘I have always had a will. As for the rest of it, I haven’t talked about my end-of-life care yet. It is yet to be done, and it will be, when the time is right. I’m comfortable with that. I don’t think there is any reason to talk about it prematurely. I’m not avoiding it, that time will come and I will confront it. But I don’t want it eating into my time now’.
Inspiring the rest of us
‘Our goal is to put the Cure for MND Foundation out of business. The Beast will keep laughing at us until we get more money. Beating the Beast is my motivation. I will fight it until I’m gone, and so the fight will continue without me’.
Neale is no stranger to the public spotlight. But this is the first time he has been interviewed by someone with yet another neurological disease that has no known cause and no current cure. There are many of us out there.
And to us, Neale is an example: not just of sporting prowess or how to fight a bastard of a disease, but on how to keep on living.