I had said to my wife
If there are things that I can do
to keep myself alive longer
I think I'd like to do that
that's the inspiration that I had gotten from this therapy
Motor Neurone Disease is what I have
and they call the type I have got "flail arm"
so I can't move either arm
and it's possibly just started in my left feet
yeah
but it's a disease that wastes the muscle away
In 2015, one my trainers had said to me
my left arm was appearing to be a little bit thinner
and that I was starting to
have a bit of a hole in my left-hand shoulder blade
and on those comments I went to the local doctors
who sent me then to the neurologist
and then on one consulation
he was able to ascertain what I had
I think I may have had again selective hearing
and he had said to me
"Buddy, if I was you"
"I'd be working on my bucket list"
yep
I was just
left stunned
stunned
When he was in the early stages it was quite good
he was quite mobile and still very active
so we joined the RACV Club and
we were still going to the gym and took up aqua
and made a lot of friendships
and we also took up travelling
so we did quite a few trips
the biggest being probably my birthday in 2016 and
we went back to where his father was born
on an island in Italy and
renewed our vows
which was a big highlight for us both
and our very last one was probably last year and
we took off to the Maldives and that was super special
but soon after that
he started to deteriorate a little bit more
and travelling was becoming all too difficult
and then he hit a rock bottom
which was earlier this year
and lost his will
I was convinced
when I had woken up
that morning
that I wanted to die
and I said to my wife
"Babe"
"don't talk to me today"
"I got nothing good to say"
I called Russell to come out
in the hope that you know we could
give him some faith and will
to continue living and being with us
and that actually happened
The next day I had met Keith
who coordinated my dignity therapy
Bruno was in a fairly low spot when I first me him
he was clearly physically struggling with his illness
but also
he hadn't said before what he needed to say
I explain dignity therapy
as an opportunity for people to
create a legacy document
which incorporates the important things
in their lives
it incorporates the things they're proud of
the things they've achieved
but also incorporates their values
the things they've learnt about life along the way
and messages they'd like to give to their loved ones
it's not a full life history
it's much more than that
it's more about who they are as a person
and what they'd like to be remembered for
and the things they want to say
to the people who are the most important to them
It had been uplifting for me
it revealed a lot
about myself
and to have that read
by my wife for the first time to my parents
my dad kissed it and he held it close to his heart
and that was a joyful thing
It's just amazing
what that Book of Reflections
is able to bring me
it had created the space
for me to tell the important people in my life
who they've been for me
and that was just an unbelievable uplifting feeling
to have drawn the courage from this document
to have done that
it was amazing not only for me
but for those people
I get all my family and friends that come to visit
to read that booklet back to me
and it keeps creating magic
in new conversations for me
I had discovered this will to live longer
I think it's a must I think anyone that's going through
an illness or a terminal illness
it definitely brings you know hope and faith
to a person and gives them a purpose
gives them a purpose to keep going, keep fighting
it's made the world of difference
to us in particular
and my children and the whole family
its definitely been a magical thing as Bruno says
Time is of the essence
and I think that's where my true values
have shifted towards
understanding that time is the biggest gift
that anybody can give of themselves