2014
64 marieclaire.com.au“Parkinson’s disease sentenced
me to home detention”
LIZ JACKSON, JOURNALIST
I
knew so little about Parkinson’s
when I was diagnosed that I don’t
think I was as concerned as
I should have been. I thought, if
I don’t have a tremor maybe I’m OK.
“I wasn’t aware of the huge impact
it would have on my life. I’m not able to
look after myself. I’m not supposed to
drive a car. I haven’t spent a day on my
own since then – if Martin has to go
overseas for work we have to arrange
for someone to come and live with me.
All those things have just been very
hard for me as I have been a^
very independent person all my life.
“When the drugs I was taking
weren’t stopping my panic attacks,
Martin decided to find out why. He’s
the sort of person who reads the back
of the packet and knows what the drugs
are actually doing to me. At first I was a
little bit sceptical because I thought,
well, you’re not a doctor. I know that
sounds conservative but I wanted to
know what the doctors would think of
[his input], and the doctors took it
really well. They didn’t think he was
interfering, I think they were
impressed. I was impressed too because
it just showed a level of commitment in
terms of what he was going to do.
“I was hesitant to tell my story [on
Four Corners]. My two closest friends
both had worries about it. They didn’t
say no, but they thought the mental
and physical strain might be too much.
“My sister, who’s a doctor,
thought I should be devoting my time
to finding good doctors and looking for
a cure for the disease. It was difficult tomake the decision – and I hope I’ve
made the right one.
“I’ve had some really lovely
correspondence [since the show]. I get
a lot of stories about people’s relatives- their dads, their uncles, and what’s
helped them. And also thanking me for
just putting Parkinson’s so squarely in
the public domain. [One journalist]
wrote a beautiful piece about his father
who died from the disease and said
they never used the term ‘Parkinson’s
disease’ in the house. Never. They said
it was because he was ashamed. So, I
feel it’s been good to confront that
openly, to say that there’s no shame^
in Parkinson’s. It’s not a lot of fun, but
there’s no shame.
“I think I fell in love with Martin
all over again when we had children.
[Going through this disease] is sort of
like falling in love with him again
because he’s been so good at looking
after me. After the diagnosis I said to
Martin: ‘I have Parkinson’s disease. My
life will be very different from now on,
and yours will be too.’ And he said:
‘I know that.’ I also said: ‘You can say if
you want to go, just tell me,’ and he
said: ‘No, I don’t want to, I’m going to
stick with you till the end.’ That was
incredibly reassuring for me.
“There are times when I’ve thought
that he’d lost interest in the project –
‘the project’ being looking after me, not
the film. Sometimes we disagree about
what we think we should do but he’s
always very clear that it’s not conflict
over whether or not he’s on ‘the project’,
it’s a conflict about making sure it gets
executed as well as it can.
“And ‘the project’ is to make my life
a little bit easier.”The Walkley Award-winning reporter, 66, was diagnosed with the
debilitating condition in 2014, suffering pain, panic attacks and
an ongoing fear for her future. But her difficult decision to allow her
filmmaker husband, Martin Butler, to document her journey with the
disease for Four Corners struck a deep chord with many sufferers
and their families, and shone a light on the couple’s powerful love.“While going through
the disease I fell
in love with Martin
all over again”Liz Jackson’s
husband, Martin,
has been steadfast
in his support.First person