Hello.
If you watched TV in the 1980s, you'll likely remember Hello.
If you watched TV in the 1980s, you'll likely remember
the effervescent Fiona MacDonald, the presenter of the game show
It's A Knockout and the kids' program Wombat.
We first told you Fiona's story about a year ago,
as she was fighting motor neurone disease and doing her best
as she was fighting motor neurone to give it the middle finger.
Sadly, Fiona died earlier this month,
three years after her diagnosis,
and with her family's permission,
we're bringing you her courageous story again.
WOMAN: When Fiona was saying, "Let's do a road trip around Australia,"
I think everybody said, "What? Thelma and Louise?"
I thought, "Oh," in my head, "Oh, no, far out."
But of course I said, "Yes, great, let's do that."
And we've got a couple of major issues with this map.
We probably should have bought the more expensive one.
JACKI MacDONALD: I said, "No, no, no, no, no.
JACKI MacDONALD: "You can't do it. It's too far.
"You're going in a tiny, little car
"and you're going to put a wheelchair and a walker..."
I said, "I expect you to get to Adelaide and turn around."
MAN: Fiona is irrepressible.
She never takes a backward step.
Well, my little buttercup, what?
Oh. I've got something really interesting for you.
Have you? Yeah.
What is it called? Your hat's about to fall off.
What is it called? (LAUGHS) A prediction.
No, do you know what the most common (LAUGHS) A prediction.
No, do you know what the most common name in the whole world is?
Fiona was just... She was a natural at television.
All of her life, people have been drawn to her
because of her enthusiasm and her joie de vivre.
ANNOUNCER: Billy J. Smith and Fiona MacDonald!
ANNOUNCER: Billy J. Smith (CHEERING, APPLAUSE)
And just to make sure you know who you're cheering for,
And just to make sure you know here are the team colours.
MAN: Fiona is driving around, I think, with two goals in mind.
Number one, irrepressibly, to have fun.
And secondly, to raise money for motor neurone disease.
WOMAN: I think Fiona, once she decided
that she was going to be a warrior for MND,
she decided, "I'm going to use my profile.
she decided, "I'm going "I do have a history.
"I've got... I've done things,
"so why don't I make those things count?"
Sitting on the couch, doing nothing.
Waiting for it to get worse.
You know, just thought, "Let's just do something about it."
Others who have got motor neurone. Yeah.
WOMAN: And did anyone try and talk you out of it?
WOMAN: And did anyone try (BOTH LAUGH)
MAN: Hey.
Welcome.
Good to see you.
Fiona was diagnosed with motor neurone disease in November 2021.
Fiona was diagnosed with motor Come on in.
MND is a neurodegenerative disease that damages the special cells Come on in.
MND is a neurodegenerative disease that damages the special cells
that enable us to move, breathe and swallow.
It kills you, on average, 27 months after diagnosis.
Most people do lose weight because it becomes harder to eat.
We must unpick why people get the disease
and what in the environment has caused it.
It's one of the very important things that we watch.
It's one of the very important Eating Fat Bastard food...
(LAUGHS)
..and keeping your weight off.
MAN: As a fellow scientist, Dom is gold for me
MAN: As a fellow scientist, because he's a neurologist,
where he's got a great investment in the science.
He's very passionate,
he loves research,
and he's really driving this,
"Let's find the cause of MND."
If you want, I can put some Botox into the muscles here.
(MURMURS, LAUGHS)
KYLIE: Around here as well.
I won't tell anyone KYLIE: Around here as well.
I won't tell anyone if you don't tell anyone.
Following the initial shock of the diagnosis,
Fiona put her armour back on, pulled herself together,
and with a bit of a...
..hmm, "fuck you" approach...
..said, "This is what I'm going to do."
MAN: Mum and Kylie started their 15,000-kilometre road trip
on the 6th of July from Sydney. 15,000-kilometre road trip
on the 6th of July from Sydney.
Mum set up a GoFund raise page as well as an Instagram account
Mum set up a GoFund raise page to ask for support.
It was pretty amazing.
Hundreds of donations just flowed in as they travelled.
To drive around Australia, it's extraordinary.
Let alone battling a disease it's extraordinary.
Let alone battling a disease
that's robbed you of your ability to...to speak,
impacts your ability to drink, to eat, to walk.
impacts your ability to drink, We made it. (LAUGHS)
To do that is a marathon,
gargantuan effort.
Ready? Hooray!
Go. Hooray.
Oh. (LAUGHS)
I think that the positive
"gotta keep going, gotta keep going"
has definitely been instilled in Fiona from our parents.
Our family grew up in Blackwall, which is central Queensland.
Dad was a grazier and had cattle and dams and sheep.
It was a massive property.
Mum and Dad, salty, crusty, beautiful people.
The glue of the family was the fun, the laughing and the jokes,
and, you know, scrambling over the bad bits with a sense of humour.
Our house burnt down a couple of times in the bush
and they'd never make a big fuss about it.
I'm sure they were devastated.
But instead of giving it to us to have the burden of,
But instead of giving it to us they'd say, "Don't worry.
"We'll all go into town and buy new clothes."
I do think that positive attitude has rubbed off on Fiona.
I do think that positive attitude WOMAN: What's that one?
I think it was Wombat's...
..Wombat's fifth birthday or something like that.
In the 1980s, our television screens were lit up
In the 1980s, our television by the two MacDonald girls.
Jacki was on Channel Nine with Hey Hey It's Saturday. by the two MacDonald girls.
Jacki was on Channel Nine with Hey Hey It's Saturday.
BOTH: # I got you, babe... #
This show is deep.
One day, the producer came down This show is deep.
One day, the producer came down and he said,
One day, the producer came down "We wish we had someone like you.
"Who is as silly as you? Who are we going to find?"
And I said, "I know the perfect person. My sister."
You did something called The Fun Factory.
You did that for a few years, didn't you,
You did that for a few years, before you went to Wombat?
# Wombat! #
See this effect here of these beads coming down?
Really superb, don't you think so? Just hang on to those for a sec.
And if you need, I think a touch of brightness in the handbag. Just...
Fiona, when she joined Channel Seven, she was doing Wombat,
and she was one of the major reporters.
Children's television was quite new in those days.
By the way, in case you were wondering,
this story has been brought to you by me dressed as a Ming Empress.
Fiona was a very successful presenter
because she actually cared about what she was doing.
But she also had a zest for everything and an enthusiasm.
But she also had a zest Children's television was important.
Make 'em curious. Yes.
It was a wonderful time for me.
The last program she worked on was a colourful game sort of show
The last program she worked on was called It's A Knockout.
That was in the '80s with Billy J. Smith.
That was absolutely brilliant!
Top fun, hey? That was absolutely brilliant!
Top fun, hey? Don't call us Builders for nothing.
Top fun, hey? (LAUGHS)
You guys deserve a medal.
But I suppose you'd rather have the four points.
That's for sure, Fiona. OK.
Fiona left television after It's A Knockout
and slotted almost seamlessly into the wine industry,
and slotted almost seamlessly where she was...
She wrote beautiful brochures and wine descriptions
and became an absolute expert.
Fiona was married in the '90s
and had two beautiful boys, Harry and Rafe.
But she's been single ever since they were little.
HARRY: Mum has always embraced life with gusto.
HARRY: Mum has always embraced life She's a massive extrovert.
Then back in early 2021, out of the blue,
she started to have a couple of weird symptoms.
She'd ring me in the afternoon and I did notice a slight sort of,
you know how you are when you've had a couple of drinks?
you know how you are when And then one day she asked me,
"Do you notice that I'm slurring at all when I talk to you?" And then one day she asked me,
"Do you notice that I'm slurring at all when I talk to you?"
And I said, "Not really. Only when you've been out to lunch."
And she said, "I haven't been out to lunch."
That was the very first sign.
And then she had a fall, bit of tripping,
which was when we were saying, "Just go and find out what happens."
And once you go down that road,
it's many, many tests until you get a diagnosis.
COMPUTERISED VOICE: I was blown away.
There's no family history of MND. COMPUTERISED VOICE: I was blown away.
There's no family history of MND.
It was a big shock.
Initially I withdrew.
I wouldn't talk with anyone Initially I withdrew.
I wouldn't talk with anyone about having this terminal disease.
I wouldn't talk with anyone My world came crashing down.
When talking about the diagnosis of motor neurone disease...
..in my experience, the most critical element is to be honest...
..and compassionate,
and sometimes profane.
Because...it is a fucked disease.
You know?
So if it's fucked, call it fucked.
If it's a shit sandwich, So if it's fucked, call it fucked.
If it's a shit sandwich, call it a shit sandwich.
If it's a shit sandwich, Don't pretty it up.
Don't put hundreds and thousands on it.
And don't pretend it's something else.
COMPUTERISED VOICE: Before I lost the ability to speak,
I recorded my voice, which is now computer generated.
WOMAN: (OVER PA) Qantas Airlines would like to welcome
all guests travelling through to Port Hedland WOMAN: (OVER PA) Qantas Airlines would like to welcome
all guests travelling through to Port Hedland
on Flight 213 to board now through Gate...
COMPUTERISED VOICE: It took some hard work to accept my new reality
COMPUTERISED VOICE: It took some and get on with living my life.
But I still needed some purpose.
I wanted to give back.
That's when I thought of driving around Australia to raise money
That's when I thought of driving for research into MND.
You'll be alright. It's exciting.
You'll be alright. One of the highlights of the trip
was when Harry flew into Broome to join us.
(WOMEN LAUGH)
How are you?
(LAUGHTER)
How are you?
She can't talk.
How are you? She's too emotional.
It is frustrating to see, and frustrating to...
It's why, why her, or why is this happening to us, to her?
But I think, like I've learned from her
you deal with the hand that you're dealt.
you deal with the hand It's that MND getting 'em emotional.
I've missed you guys.
Being sad about it around Mum doesn't help her enjoy her life
Being sad about it around Mum and enjoy what she wants to do.
And that's not how she would want me to be.
You need to be careful,
she's worked out how to drive this at high speed, so...
(SHRILL BEEP) Watch out. What does that mean?
Was that a beep? Yeah.
Was that a beep? (ALL LAUGH)
When we were at Cable Beach in Broome,
it just felt kind of like nothing really else mattered.
it just felt kind of like That'll be alright now.
You could just see that it meant so much to her.
Fiona's always loved the ocean. She loves to swim.
She loves to, you know, just get in the water.
She loves to, you know, (ALL LAUGH)
Now the ocean is dangerous.
Because her mouth Now the ocean is dangerous.
Because her mouth won't close properly,
so when she gets in the water, if a wave comes
so when she gets in the water, and splashes down her throat...
Oh.
I reckon just go down to your knees Oh.
I reckon just go down to your knees and then just fall into the wave.
I reckon just go down to your knees Really? OK.
Get down on your knee, Harry. You suggested this.
Alright. And then just fall into the wave.
Yay! Yeah!
(ALL LAUGH) It's so shallow.
Although Mum can't go in the water unassisted, she loves it.
I'm hoping she can still enjoy it for a while yet.
Go hard. On a turn. Yeah, hard left. Hard left.
Yeah. Now back it in.
Yeah, nice.
Nice. Right up to the kerb now.
Keep going. Yep.
Keep going. Keep going. Yep, yep, yep, yep, yep. Yep.
Keep going. Yep, yep, yep, yep, yep.
Alright, beautiful.
One, two, three!
It's pretty terrible that she's lost the ability to speak
because that's just... that's her tool.
because that's just... Beautiful.
Is that the last one of the ones I took?
Is that the last one Yeah.
She loved, yeah, being Yeah.
She loved, yeah, being the life of the party,
sort of being able to have that voice and command a room.
sort of being able to have That's amazing.
COMPUTERISED VOICE: I'm struggling to come to terms with my loss of speech.
COMPUTERISED VOICE: I'm struggling to It's a deep grief.
Talking is so much a part It's a deep grief.
Talking is so much a part of being human.
Talking is so much a part It's like rain or snow.
It comes in many forms.
The live patter, the intense discussion, the passionate argument,
a quick, witty aside.
Jokes that make you cry with laughter.
Do you find that people react to you differently
Do you find that people when you can't talk?
What, they think you're deaf? when you can't talk?
What, they think you're deaf? (LAUGHS)
What, they think you're deaf? Do they shout at you?
Oh, they think you're stupid when you can't talk?
Yeah, that's a common thing.
DOM ROWE: She's on a journey Yeah, that's a common thing.
DOM ROWE: She's on a journey with her motor neurone disease,
and Fiona is, quite rightly, completely the captain of her ship. DOM ROWE: She's on a journey with her motor neurone disease,
and Fiona is, quite rightly, completely the captain of her ship.
My job is to be her navigator
and to whisper in her ear as to what I think we should do.
There are two new trials coming through.
We're not yet ready to get to the start line there.
Since I moved to Macquarie University in 2010,
I looked after my 1,000th patient with motor neurone disease.
830 of them are dead.
That does come
with an emotional cost
because if you were not...
..affected by
the death of the people that you've looked after,
the death of the people you shouldn't be doing the job.
How's your mood?
Down.
COMPUTERISED VOICE: Professor Rowe is a legend.
Not only because he is tenaciously fighting COMPUTERISED VOICE: Professor Rowe is a legend.
Not only because he is tenaciously fighting
to find treatments or a cure for MND,
but because he is so kind
and offers an unusual amount of warmth and support.
I don't know how he does it, knowing his best efforts
I don't know how he does it, won't save any of us at the moment.
So, the number of deaths from MND have more than doubled
in the last 30 years in Australia and also worldwide.
10% of cases are genetic, they're inherited,
and the other 90% we really don't know what causes it.
'Cause your muscles don't ask your arteries to...
The frustrating thing from where I sit
is that when Fiona says to me, "Why did I get motor neurone disease?"
..I have to say, "I don't know."
Dom believes if we can identify the causes of motor neurone disease,
Dom believes if we can identify it will help us identify a cure.
The Riverina, in south-west New South Wales,
is a big agricultural area
and there's a high incidence of MND there,
about five times the national average.
One theory is that toxins produced by
One theory is that blue-green algal blooms,
which are present in our waterways, are causing motor neurone disease.
We have multiple harmful algal blooms in many waterways
in Australia.
KEN RODGERS: I'm a biomedical scientist
KEN RODGERS: I'm a and my interest is in neurotoxins,
trying to understand and my interest is in neurotoxins,
trying to understand how these toxins
trying to understand are causing neurological diseases.
Lots of links have been made overseas between
exposure to blue-green algal toxins and motor neurone disease,
but we really need to do our own research here in Australia.
One of my areas of research is on one of these toxins called BMAA.
And we believe that it's capable of damaging the nerves in a body
and thereby contributing to motor neurone disease.
BMAA and blue green algae, however,
BMAA and blue green algae, are not the only element in water
that may be associated are not the only element in water
that may be associated with motor neurone disease.
You have other things like pesticides, heavy metals
and just generally toxic chemicals that we can be exposed to.
We should make motor neurone disease a notifiable disease
because currently we do not know who has it
because currently and where they live.
KEN: If MND was a notifiable disease,
governments would be obliged to keep accurate data
on who gets the disease.
So the Riverina might just be one of many clusters around Australia.
So the Riverina might just be one And if we can identify who gets it,
we can work out if there are other hotspots,
and based on that knowledge, we can try and work out
and based on that knowledge, what people are being exposed to.
In you go.
# From the moment I wake up... #
Being able to drive with Mum, and spend that time,
Being able to drive with Mum, it meant a lot.
It really was a trip of a lifetime for, I think, everyone involved.
# Forever and ever
# You'll stay in my heart and I will love you
# You'll stay in my heart # Forever and ever... #
To date, we've raised 86,000,
money going directly to research for MND.
This trip is not for a cure for Fiona
because it's too far in her journey with the disease.
Oh, my God.
You'd better get in. No.
Hopefully that money will go to finding a cure for other people
Hopefully that money will go who do get this terrible diagnosis.
I think the adventure has nurtured Fiona.
It's given her a connection to the Earth.
And I think that's what she really wanted.
What do you think? It's good.
Seeing the stars out of a city,
and had these crazy emus tried to get in our car.
and had these crazy emus Hey! Hey!
Mum and Kylie have a...a sisterly relationship
Mum and Kylie have that I think anyone would envy.
Can you hang on to both of those? Mm.
You right? Yeah.
I've really found it quite interesting and crazy
that Kylie always understood what Mum was saying,
and they just kind of obviously formed
this kind of communication that just worked.
Home sweet home.
Hooray!
Fiona and I, Hooray!
Fiona and I, our relationship is, you know,
Fiona and I, I don't think it's changed.
I think we're both as daggy as each other and run around
and do crazy things like drive around Australia together.
(LAUGHS) My...
I'm the shoulder. Yeah.
We're stopped because Fiona needs to do some stretching
every couple of hours.
Otherwise it's not comfortable.
So we call it the roadside gym.
(LAUGHS)
Today we're day 34, 35.
1,000km left to go.
We are driving into Brisbane
and we're going to see our sister We are driving into Brisbane
and we're going to see our sister Jacki and our family.
and we're going to see our sister We can't wait.
Hooray! (PARTY BLOWERS TOOT)
Hooray! (SPEAKS INAUDIBLY)
Did you like the tooters?
Long time no see. How are ya?
Come on, I'll get you a glass of champagne.
KYLIE: I definitely think Fiona realises,
or feels that the clock is definitely ticking,
and she does have a finite amount of time.
I don't know how you did it. What was the camping like?
Fabulous.
You really, every day, are looking at it, knowing that, well,
"How do I feel? Oh, no. Today I can't lift my toes up."
"How do I feel? Oh, no. You know, just the progression.
Even in the time that we have been on the road, I see little things.
You know, she's starting to get a bit of swelling in her legs
and just...it's nasty.
Two words. Two words.
Oh. Write.
Second word is...it's a book. Lines?
Oh, list. List.
Oh, list. Yay!
An... Is it a bucket list?
Ah! (APPLAUSE)
Go, Andrew. Go, Andy. (SPEAKS INAUDIBLY)
I don't really think I probably have dealt with it.
I don't really think I mean, you've got to be realistic.
You know, I think the idea of
your sister not being there anymore is shocking.
I think I'm a bit of a pathetic wimp when it comes to things like that.
So I'm going to put that over there and deal with it later.
Make every day just as good as you can be.
Make every day That's what my...that's my approach.
I don't know how I'm going to deal with that.
(SNIFFLES)
(SOBS) I'm sorry.
I don't want to deal with it. I don't.
I don't want to deal with it. A big snooze. She wants a nanna nap.
I think she'll just live every day in the biggest way she can.
That's just...that's just who she is.
It was so great driving over Sydney Harbour Bridge.
It was so great driving over What a trip. What a milestone.
Good weather to go to bed and sleep.
I think she's exhausted, but I think she's also
the adrenaline of realising we're nearly home.
the adrenaline of realising You know, we've done this.
We made it!
(LAUGHS) How exciting.
(CHEERING)
When we arrived back into Sydney, it was wonderful to see everyone.
When we arrived back into Sydney, Fiona really does have a village.
Fiona has already proven
that you can have so much fun Fiona has already proven
that you can have so much fun every day if you just keep going.
And that's what she's done.
Whoo-hoo! (LAUGHS)
DOM: The thing that keeps Fiona going
DOM: The thing is her irrepressible joy of life.
Her friends, her family.
It was quite clear early on
that no matter It was quite clear early on
that no matter what curveballs were thrown at her,
she would...try to catch the ball and throw it back at you.
COMPUTERISED VOICE: For anyone with a dreadful disease like MND,
try to just get up every day.
Keep going.
Allow the emotions to wash over you
but don't let them drown you.
Enjoy life, even if it's constrained.
KYLIE: Fiona and I have had the greatest time. It's been amazing.
And I think it'll really begin to dawn on us,
the feat that we have achieved now that we're actually at home.
40 days.
And 15,520km on the knocker.
The message I think Fiona is trying to deliver to everybody is...
Live.
Live your life.
Don't sit on the couch.
Do something crazy like drive around Australia in 40 days.
Do something crazy like drive (LAUGHS) Yeah.
Enjoy.
Captions by Red Bee Media
Copyright Australian Broadcasting Corporation