Hamish McLachlan: Neale Daniher’s four children learning to find the positive in dad’s MND diagnosis
NEALE Daniher is fighting a very public battle with Motor Neurone Disease and is fighting for the benefit of everyone who will follow him. Hamish sat down with the four Daniher children to talk about their dad’s diagnosis and his determination to slay the beast.
News
Don't miss out on the headlines from News . Followed categories will be added to My News.
IF someone asks you who is the most selfless, brave and resilient individual you know and the answer’s not Neale Daniher, I’d love to meet them.
Neale is fighting a very public battle with Motor Neurone Disease. He’s chosen this path for the benefit of everyone that will follow him.
He knows whatever progress he can help make won’t help him. But that’s just the sort of individual he is — a man all about the greater good.
RELATED CONTENT: DANIHER’S FUNDRAISING HELPS AUSTRALIA LEAD WORLD IN MND RESEARCH
ALL 18 AFL COACHES TO TAKE THE PLUNGE AT BIG FREEZE 4
DANIHER TO DONATE TISSUE TO SPEED UP MND RESEARCH
Neale describes MND as ‘The Beast’ — a hairy, ugly, dark, blowfly-like creature that’s never been beaten, but who he knows can be, if we keep fighting together.
Ahead of the fourth instalment of the Big Freeze on Monday at the MCG, I spoke with Neale Daniher’s four children — Lauren, Luke, Bec and Ben.
We uncovered a father’s love for his children, the day of diagnosis, his occasional stubbornness, his desire to help others, his determination to slay The Beast, and how they would describe Neale to their kids when the time comes.
HM: Lauren — what’s your earliest memory of your father?
LAD: It’s all around sport for me. He always used to take Luke and I down to athletics in Essendon. Luke was far more talented than I was, but I’d always give it a crack! The other early memories of mine are at the farm, with Dad’s whole family. They’re all special memories growing up as a kid. I remember Dad taking us out in the ute in Ungarie! He’s not well known for his farming abilities, but he loved teaching us and showing us all he knew.
HM: Ben?
BEND: The one thing that stands out for me is when we would drive up to the farm. It’s a pretty long and dull drive — and I know Grandad’s probably going to kill me for saying that — but the one thing I remember when I was young was Dad’s piercing whistle to the music on the radio. He has a great taste in music, but his whistling to it was awful — never really in sync at all — and that’s been seared into my memory since!
HM: It’s funny what sticks, isn’t it?
LUD: My first memory is rolling into the Essendon Football Club and being by Dad’s side and smelling the familiar smell of Deep Heat. It’s never left my mind. Dad, change rooms and Deep Heat. And post work, Nealo was always keen to get us involved in some form of sport — tennis, kicking the footy, or being active up at the farm.
BECD: I remember Dad used to work so hard with the footy, but then he’d always make sure he took the time to take us to our basketball, our netball, our athletics; all the sports that we did on the weekend. As soon as he’d have a moment out of footy we’d always be doing things together.
HM: We all know Neale as a former footballer who became the coach and who’s now fighting The Beast. Describe Neale as a father.
LUD: He is a father who always finds time for us kids. He has always had a great balance. He has always been a fun-loving dad who has a great ability to never take work home with him. We were quite sheltered from the pressure of the game. He has always made us feel like we are the priority.
BECD: He has been a father — and, over the last few years working with Dad day to day, an amazing mentor. The way he views different situations is really unique. Dad is able to look at a situation, siphon the negatives, find the positives, and figure out where he needs to go next. Being able to work with him every single day has just been an incredible experience, and I’m so lucky that I’ve been able to spend the last few years with him in this way.
BEND: Dad has been a role model for me across a lot of things, whether it’s been in sport or education. He’s an incredibly intelligent man, very committed, and teaches you a way to work hard, and has you understanding how important it is to work hard and give your best. He was supportive in everything we did growing up, not just sport. I felt I could do anything and he would support me. The way he has handled such a difficult situation is setting a great example for us, and helps us put things in our life into perspective.
LAD: He’s a big family man. He’s one of 11 kids, and his whole family is very important to him, as are his friends. We’ve had incredible holidays with family and friends, and both Mum and Dad have put a big emphasis on supporting friendships and family. No matter what was going on, family was always important and always came first. He did protect us a lot in his coaching career from a lot of things, and we were very lucky for that I think, too.
LUD: When it came to decision making, he involved all of us. Whether it was the big move to Perth, initially, when he got the role at Fremantle, to moving back; we were always a part of the decision-making process. It didn’t matter how old we were.
BECD: Dad is always the first person I’d go to for guidance — regardless of how big or small the problem was. Dad would phrase it so you would work it out for yourself — he wouldn’t tell you what he thought the best way was, he would guide you through the journey so we came to the decision ourselves. He is a genius at that. His guidance has helped us all in so many different points in our lives, but he never told us what to do, he would just guide us and talk to us, and we would all arrive at the solution together.
HM: He’s been a great teacher and a great mentor. Has he always been brave?
LAD: Definitely — bloody brave, and he rarely gets too flustered about anything. Nothing really phases him. He is all about the big picture. If he’s ever upset about anything, you don’t really know, unless he’s angry! (laughs)
HM: Is there a temper there?
BECD: He’s gotten softer with age, Hame!
BEND: You’d see moments of agitation when we used to play basketball and smash all his windows! The Dees had probably lost by 100 points that weekend too, so we probably brought the worst out of him!
BECD: When Dad was ever annoyed he’d go quiet.
LUD: That’s when you’d know you’d annoyed him.
LUD: “I’m not angry, Hamish, I’m just disappointed.”
HM: I’ve heard something similar from my old man. Frightening. How did you learn that your dad had MND, and what was your reaction?
LAD: With MND you can’t just do one test and get told whether you’ve got it or not — it’s a long process over six or eight months. We knew there was something going on but we weren’t sure what it was, and there were a lot of different diagnoses thrown out there. It took a bit of time to get that final confirmation. It was always a possibility, and obviously we were all hoping it wasn’t Motor Neurone Disease. I will never forget the moment he told me. He came to Melbourne and he’d just seen another neurologist for a second opinion.
HM: You were hoping like hell it wasn’t MND.
LAD: Through my nursing I worked for a year and a half on a respiratory ward. This was prior to Dad’s diagnosis. I’d looked after a lot of patients with Motor Neurone Disease when they came in to get their breathing masks fitted and their feeding tubes inserted, so I knew what he was in for. I’d seen people in all different stages of the disease. I was aware of what was in store, but for Bec, Luke and Benny, it was a little bit different.
BEND: Dad was in Melbourne with Loz, and we were told by Mum. She told us crying when she said “Motor Neurone Disease”. To be honest with you, Hamish, I didn’t really know what it was, or why it was so bad. It only took a quick Google to realise what it was, and the first thing that hits you is how long you stay alive post diagnosis. You see some pretty damning numbers. It still hadn’t really hit home, but we were all shell shocked. Where had this come from? I wasn’t aware of all the testing that was going on in the eight months prior and I understand now that it was to protect me until they knew for sure.
LUD: I’ve always been like a sponge with Dad — I’m always looking at what he’s doing and what’s happening. I did start to notice that something wasn’t quite right, and I knew Mum and Dad were looking after us and sheltering us, trying to figure out what it was before they’d let us know. They didn’t want to scare us unnecessarily. I didn’t look into it too much, but I knew there was something up — I had that gut feeling. I think Mum and Dad had a chat, and then Mum said she’d let us know. Nealo shot off to work, so Mum sat us down and delivered the news. Judging by how upset Mum was, I realised it wasn’t good. When Mum left the room we jumped straight onto Google and saw the stats and that’s when it all sunk in and I realised how dire it all was. A minute beforehand, you’ve got your big six-foot old man who is strong as an ox, and then you look at those stats and you think, “S---, how can this happen so quickly?”
HM: It’s incredible.
LUD: And then your mindset immediately switches to, “OK, what’s going to happen now? What’s he going to do? What can we do? What drugs can they use? What’s the treatment?” Then you realise the big issue — there’s no treatment and no cure. That’s when it really hits home.
HM: It’s hard to believe that in 2018 that can be true — no known cause, no treatment and no cure.
BECD: I had no idea what Motor Neurone Disease was at all when I found out. Dad sat me down and said, “Bec, I’ve got Motor Neurone Disease”. Then he said, “But I could be hit by a bus, and that’ll be the end of it anyway! Don’t worry though, I’ve got plenty more days in me”. I didn’t really get the gravity of what he was saying. I was travelling around quite a bit at the time, as I was on the Australian Rowing Team. It actually took me a couple of weeks to get the bravery to jump on Google. I remember sitting there reading about it in South Korea. I just couldn’t compute it all and the seriousness of it. I thought we had years and years together — I thought there was plenty of time left to be with Dad. I thought it was a small hurdle. I had no understanding that it was as bad as was.
HM: How long was Neale given when he was diagnosed? What was the messaging from the doctors?
LAD: They didn’t really give a time frame, but they did say the average life expectancy was 27 months. It depends on the progression of the disease, and it’s different person to person. They give you this diagnosis and then you ask if you can do anything. They say “nope” and that’s that. I still remember him saying, “You know, I’m lucky that I haven’t been diagnosed with something else where I’ll be dead in two weeks”. Already in the early days of his diagnosis, he was looking for positives. I remember he sent a text to close friends, and I remember him telling them that he had the disease. He said, “Play on!” I think that sums him up in a lot of ways.
HM: What changed with your relationship when you realised he had limited time left?
BEND: Dad and I now talk about things that are a lot deeper than just footy scores these days. We’ve started talking about life and in-depth stuff, which I’ve found fantastic and learnt so much from. We now talk about how he sees life, and what he feels about everything. It’s given me a lot of pleasure just being able to have those really good chats. Sometimes I wonder if I’d ever had them without the diagnosis, so I suppose there’s a silver lining in everything.
LUD: I think I feel like I was just going through life prior to the diagnosis with a “business as usual” mentality. You can get stuck in the business of life, but I think, like Ben said, the silver lining is it has drawn us all a lot closer, and now we really value family time. At the end of the day, we all live and we all die, but it’s really important to value all your friendships. It’s been a great reality check for me, and I think it’s brought me closer personally to Dad, and also the family.
HM: It’s disappointing that some of us need MND to realise all of those things, isn’t it?
LUD: Yeah, it’s crazy, isn’t it? Nealo’s just approached it the same way he’d approach anything though. He was captain at 21, then a knee reco. Came back again — another knee reco. Then another knee reco. He realised his opportunity was in coaching. Out to Fremantle, and then to Melbourne, where he took a team from the bottom of the ladder to a grand final. It doesn’t matter what obstacle is in his way, he always seizes the opportunity.
LAD: The way Dad talks about MND, it’s never about him — it’s about everyone around Australia who’s battling with MND. He’s the voice for those people and their families. He thinks if we focus on that, something good can come out of this, and that’s what we all want. If something good can come out of it, then it’s all been worth it.
BECD: My relationship has changed quite a lot, because now we work so closely together within the foundation. He’s mentoring me throughout the process. We discuss the foundation, the focus, what we’re doing and how we’re going to achieve it. I’ll come over for dinner and we’ll end up talking about FightMND the whole time. It drives everyone bonkers! But I’m so glad I spend so much time with Dad now.
HM: Has it helped, in some way, having a public battle?
BECD: I think it’s helped in having a focus. The public battle is sometimes tough. During Big Freeze, we listen to Dad talking about how The Beast will get him and it’s hard to be reminded that he may only have a limited time with us. However, now we’re focused on what we can do to change the facts of MND. We want to find a treatment and a cure, and it’s how we as a family come together and battle with Dad. We’re not watching from the sidelines; we’re behind him every step of the way.
HM: He’s been so philosophical, so brave, so pragmatic and so inspirational; has he ever been emotional? Have you ever heard him whimper, or complain ever, about The Beast?
LAD: Oh, he complains! (Group laughs) But I think it’s the nature of the disease. It takes away the ability to do the things that we take for granted every day. It’d be incredibly frustrating. I have to say that he has handled it incredibly well. He’s not the most patient individual and he’ll admit to that; it always has to be done his way. He’ll get a bit frustrated at times, but he likes to have fun with it as well. We’ll be out to dinner and he’ll say, “Oh, I can’t pay for dinner because I can’t get my credit card out of my wallet”. (Group laughs) Or “I can’t do the dishes — I’ve got MND!” He makes a bit of fun out of something that isn’t funny at all. That’s his way of handling things, I think, which helps not only him, but the people around him.
BEND: He’s incredibly stoic, from my experience with him. He complains more about me not picking up the dog poo than he does about MND, Hamish! To be honest, maybe behind closed doors with Mum it might be different, but I’ve never seen him break down or let the emotions get the best of him. That’s the honest truth, which is pretty amazing. If I was in the same position, I’d be a mess!
BECD: He’s more annoyed if you bring a crap bottle of red around.
HM: I remember speaking to him a couple of years ago, and he said, “There’s a couple of things I don’t do anymore: I don’t eat soup, and I don’t drink crap red”.
BEND: Yep! That’s it — soup gets messy!
LAD: He’s not going to waste his time drinking crap red!
HM: What have you learnt about your old man since the battle began?
BEND: He’s a tough bastard!
LAD: Dad has always been very determined. Whenever he puts his mind to something, he always invests 100 per cent, no matter what it is. We’ve always known him as determined, but he’s gone above and beyond since his diagnosis.
BECD: I’ve learnt he can find positivity out of any situation he faces. It really is incredible. He hasn’t really complained about his battle, he’s just on the job. He always tells us that we have to have a purpose and that purpose has to be positive. Don’t set your mind on the negatives; there’s opportunity in every situation, you’ve just got to find it. He’s living that now every single day. It’s incredible.
BEND: He’s incredibly selfless — he knows all his work isn’t going to benefit him health wise. He hopes there’s going to be a cure for people down the line, but he knows not for him. It’s incredibly selfless of him.
LUD: I just think two words: courageous and selfless. With this fight, it’s not about him. Like we said, it’s about that voice. When we first found out about it, we had no idea, and that was quite damning. I think it’s that selfless nature, like what we heard in his Melbourne speech. You could go off into the sunset and try to tick off these bucket list items, but he knows that doesn’t give him any purpose. We learnt about his philosophies in life, about finding your purpose, seeking opportunities and not playing the victim. It’s really something he preaches.
HM: Has there been a moment, or a vision, that has affected you more than any other over the last number of years with Neale?
BEND: There was one for me and Mum. We had a pretty scary moment at the start of this year with food and some choking. It’s something you can’t get out of your head. Dad was choking and going purple and I was trying to perform a Heimlich on him to keep him from dying. It just burns an image in your head. I was thinking that these might be the last seconds I had with Dad alive. That was the moment things really hit home for me. It was tough to actually have it right there in front of your face. Sometimes you can just drift off and have it out of your mind, but when something like that happens, you think it might be the last image of him you’ll have.
HM: It was just you, your mum and Neale was it, Ben?
BEND: Yeah — it was terrifying.
HM: What about you — Bec, Lauren? Have you had anything that has really startled you or shocked you?
BECD: When he first had MND it was affecting his hands only, you didn’t really notice it much. I remember a few years ago, we were on a holiday up in Byron, where we usually do the walk to the lighthouse. We were halfway along and I noticed that Dad was struggling so much more than he did as a fit, healthy and active man the last time we were there. The walk was just taking it out of him, which was something that he’d just do with his eyes closed normally. That was the first time that I realised it was really starting to attack his body.
HM: So many people are affected by MND. How is your mum coping?
LAD: We talk about Dad being tough, but Mum is a pretty good rival. She’s one tough woman. She has a similar attitude to Dad, which is: “Get on with it. You make the best out of what you’ve got!’ We all support Dad as much as we can, but she’s there every day. I think she’s been pretty impressive, you can’t help but admire her. We are very lucky to have a strong woman like her in our lives.
HM: They’d be a bloody hard mixed-doubles combination to beat!
(Group laughs)
BEND: They’d win all the majors!
HM: Individually, what do you think is the happiest moment you’ve had with your old man?
LUD: When we all get together as a family, with no distractions, that’s when I am happiest. When we are all sitting around a table, when we’ve all got a drink in our hands — and then we turn the boom box on and we flick through a few different tunes. We’ll talk about our life, what we are up to, why we’ve chosen certain songs — we always have a laugh. They are my happiest moments all of us there together in each other’s company, having fun.
BECD: I think one that comes to mind is when he walked me down the aisle. Loz and I didn’t know whether that was a possibility when Dad was diagnosed, so that was a pretty special moment that I was able to experience with him.
BEND: The happiest moment with Dad is similar to Luke’s, actually. He runs these very well organised music quizzes, Hamish. Everyone gets on board! We play in teams, which is always a little fun. Another one of my highlights I can recall came after he finished up at Melbourne, when he decided to coach my U/15s football team. I was a pretty average junior footballer, but every now and again his fatherly bias came out and he’d put me one out in the goal square. Just little moments like that really put a smile on your face, and you realise he’s thinking of you and he loves you.
HM: Brilliant. Lauren, to you as a nurse, it’s hard to believe — and you touched on this earlier — that it is such an unknown disease, that can have no cause, no treatment and no cure.
LAD: Yeah, it’s one of the cruellest diseases that I’ve seen. The way that it gradually takes away the things you love. It takes away your ability to walk, to talk, to swallow and then, ultimately, to breathe. It gradually takes away bit by bit from you, and I think that’s what’s so cruel about it. It can be incredibly hard to go through for someone with the disease, and it’s very hard to watch as well. You want to help, but there’s nothing you can do. That’s when, I suppose, you need to focus on what we can do, which is the work we do in supporting the foundation, supporting the research and spreading awareness. Raising funds for research is hugely important, but I’ve noticed how important awareness is to families around Australia. Hopefully families are feeling better supported because there is a better understanding of what MND is and how it progresses.
BECD: I remember one instance with Dad, we were at a bar and he went up to order a drink. They cut him off because they thought he was intoxicated due to his slurring. When you go up and tell them that he’s got Motor Neurone Disease, there’s just blank faces. I’m working at the foundation now, and I’m talking to families who share similar stories.
HM: I remember doing the interview with Ange Cunningham, and she could only move her eyes at that point. When she answered one question she typed something like, “I’ve never been sharper intellectually, because I’ve lost everything but my brain. Everything’s perfect, mentally, but I look as though I’m not able to have a conversation”.
BECD: Yep, and so many people wouldn’t know how to talk to people in that situation. Now we’re hopeful that there’s a lot more awareness and people know that they’re still the same person. Unfortunately, there’s some people that can’t move around as well as they used to, or some people that can’t speak as well as they used to, but their minds are still as sharp as ever.
HM: Bec — how many beanies have we got to sell this year?
BECD: We ordered a whole lot more this year and we’re looking good to sell out again! We thought that it was an impossible number, but this was actually another one of Dad’s ideas! He thought it was our year to go big. He put his name behind the number, and it’s going incredibly well.
LAD: We’re out at beanie HQ in Glen Waverley! We’re in this big warehouse, which we’re very fortunate to be able to pack all the beanies in. Year one we were in Mum and Dad’s living room, and I think Mum was pretty relieved when Billy Guest offered up some space! She got her living room back. It was amazing to see how much it’s grown, from 5000 beanies year one, packing as a family, to the warehouse today, with all these volunteers that have given up their time to help us distribute. Today we packed about 8000 orders!
HM: Wow.
BECD: Yeah, it was a big day out there today! The people that give up their time to come along are incredible. They’re people we’ve never met before, but they want to get involved and do their bit to help. It’s a pretty humbling experience, I have to say. I remember it was me, Lozza and my husband, Drew. We wanted to do something more for Big Freeze, and we went up to Dad and said we wanted to sell beanies. We told him we thought we could raise money and awareness through these beanies, and asked him to give us a chance. They agreed to allow us to sell 5000 that year and then they sold out. We ended up selling about 33,000 that first year. It’s such a badge of honour for the FightMND army to wear, to support Neale and support the foundation, and everyone out there with MND.
HM: It’s almost like a collector’s item now. “I’ve got to get my MND beanie!”. Thirty-three thousand first year, what about second and third?
BECD: It was about 33,000, then around 42,000, then 50,000. We’ve gradually improved on the design! We look back to year one and sort of just scratch our heads.
BEND: Simple, but very effective.
HM: Do you know what’s extraordinary? If you sell out again, you’ve sold well over 200,000 beanies.
BECD: If we sell out, that’s over $2 million in proceeds from beanies this year alone, which is just a massive. It’s going to make such a difference. It’s amazing, the power of these beanies, and how it translates into the research we can support, and the clinical trials.
BECD: Year one we never would have expected to be able to do that.
HM: Let’s get them sold. Last one: when your children are 10, and they ask you, “Mum, Dad, what was grandad like?”, what will you say?
LAD: Dad was a man that taught me that life is about people, about finding the positive and the opportunity in difficulty situations. To always have a laugh, to have a good song list, and to enjoy every minute.
BEND: The best teacher, role model, friend and DJ I could have ever asked for!
LUD: The greatest educator, life coach and idol, who I continue to strive to be like. Despite all of his knowledge and life experience, he never once told me how to live my life — he just paved the way through actions. That’s the approach I hope to be able to emulate for you to pass on to your children on day.
BECD: I can’t answer this question in past tense as I’m still hopeful something will change, despite how unrealistic it may seem. So I’d say, “Your grandfather can make you laugh one moment and then inspire you the next. He is a fighter, a leader, a mentor, and the best dad you could ever want.”
HM: Perfect. Thank you all for your time. The admiration and respect for your father is universal — he is an incredible man. If there’s anything we can ever do to help, please yell out.
BECD: Thanks Hamish. Thanks for everything that you’re doing. We really appreciate it.
To donate to help fight The Beast, go to fightmnd.org.au.
Brewery puts name on global sporting stage
It’s the little brewery that could. A South Gippsland craft brewer is putting its name on a motorsport event with a global audience of more than 100 million people.
West Gate Tunnel build set to close key Docklands route
Brace for more traffic pain linked to the West Gate Tunnel project with a key route in the Docklands set to close.