SNN_April 2023 Issue_web

April 2023
Volume 26 / Issue 1
Te Tarahiti Manaaki Tuanui
SNNSpinal Network News
CHRISTINE BLAKE—AN
UNSTOPPABLE INTREPID
TRAVELLER
BAILLEY UNAHI—
CARVING UP THE
SLOPES IN CANADA
BRENDAN TOURELLE
REFLECTS ON HIS TIME
AT SPINAL SUPPORT NZ
You’ll be surprised
how good life can be
Dr Johnny Bourke on
finding perspective

NEW ZEALAND SPINAL TRUST 2
Contents
3
Editorial
Finding your Future
25
Time to Move on
Josh Caldwell reflects on his time at NZST
5
Supporting Positive Futures
Hans Wouters—CEO NZ Spinal Trust
28
The End of an Era
President of Spinal Support NZ
8
Helping Others After SCI
Dr Johnny Bourke on finding perspective
30
Library
New Additions
12
What Aimee Did…
The Gift of Wrapping
31
Column
Hamish Ramsden on funeral etiquette
13
Finding Her Happy Place
Bailley Unahi on representing NZ in Canada
32
BAT Update
Walking backwards into the future
16
The Launch of the Para Sport Collective
A new initiative from Paralympics New Zealand
34
Honouring a Legend
We Pay Tribute to Dr Angelo Anthony
19
Out There and Doing it
The intrepid travels of Christine and Ron Blake
35
Funders and Sponsors
23
Tikanga Māori
Lee Taniwha on finding the meaning of Matariki
EDITORIAL TEAM
Peter Thornton (Editor)
CONTRIBUTING WRITERS
Peter Thornton
Dr Bernadette Cassidy
Su Marshall
Hans Wouters
Tina Morrell
Hamish Ramsden
Bernadette Cassidy
THANKS TO THE FOLLOWING
FOR IMAGES IN THIS MAGAZINE
Hans Wouters
Johnny Bourke
Bailley Unahi
Getty / Paralympics NZ
Shane Wenzlick
Christine Blake
Brendan Tourelle
BAT
Su Marshall
Tina Morrell
Patrons of the New
Zealand Spinal Trust,
Sir Tim Wallis (left) and
Trevor Harrison (right).
SPINAL NETWORK NEWS is
published by the NZ Spinal Trust
Send your contributions to:
The Editor SPINAL NETWORK NEWS
c/- New Zealand Spinal Trust, Private
Bag 4708, Christchurch 8140
Tel: (03) 383 9484
Email:
peter.thornton@nzspinaltrust.org.nz
Web:
www.nzspinaltrust.org.nz
Copy Proofing: Bernadette Cassidy
and Su Marshall.
Cover Photo: NEW ADVENTURE—
Johnny and Corrin Bourke are
enjoying stepping out of their comfort
zone in Sydney.
Disclaimer: The views expressed
in SPINAL NETWORK NEWS are
those of its contributors. They do not
necessarily represent the opinion
of the members of the Editorial
Committee or the policies of the New
Zealand Spinal Trust.

SPINAL NETWORK NEWS 3
Finding
your Future
Peter Thornton
Editorial
MEMORIES—Michael J. Fox and Christopher
Lloyd became lifelong friends while making
the Back to the Future trilogy.
My favourite movie of all time is Back to the
Future. I love everything about it.
The opening scene where Marty McFly (Michael J. Fox)
steals a ride to school behind a procession of cars on his
skateboard; accidently going back in time to 1955 and
meeting his parents; his Dad George McFly (Crispin
Glover) knocking out the bully Biff Tanner (Thomas F.
Wilson) to get the girl; or the unforgettable scene of Marty
playing Chuck Berry’s Johnny B. Goode at the
‘Enchantment Under the Sea Dance’. I could go on.
I have watched this movie more than 20 times and I still
love it. There is something timeless and comforting
about watching the Back to the Future trilogy for me.
It feels like home.
Like most lads my age, Michael J. Fox was one of my
heroes growing up. So, when he revealed to the world in
1998 that he had Parkinson’s Disease (PD) I was gutted.
Fox was diagnosed in 1991 and disclosed his condition to
the public seven years later. As the symptoms of his
disease worsened, he retired from fulltime acting in 2000.
For as long as I can remember I have always been a fan.
Since his iconic role as Alex P. Keaton from Family Ties
I have watched Back to
the Future more than 20
times and I still love it.
It feels like home.
—Peter Thornton
through to the later stages of his career in Spin City,
cameos in Curb Your Enthusiasm, Designated Survivor,
Boston Legal and The Good Wife, he’s been a timeless actor.
When I was browsing the aisles of a bookstore recently, it
was a good day to find his latest book on clearance. It’s
called No Time Like the Future: An Optimist Considers
Mortality. It’s brilliant.
Fox delivers a moving account of resilience, hope, fear,
and mortality, and how these things resonate in our lives.
In his own words, Fox says the book “tells the story of how
he made peace with the disease”.

NEW ZEALAND SPINAL TRUST 4
Fox’s book shows life is
not what happens to you,
it is how you respond.
—Peter Thornton
There were many lessons I took from reading his book.
Many of which I have learned and re-learned throughout
the course of my life.
1. Smile through adversity
Fox is hit with challenge after challenge—Parkinson’s
Disease, spinal surgery and the recovery, a bad fall which
shatters his left arm. Yet he never gives up. Better still, he
finds a way to smile and laugh through the hard times.
After his spinal surgery, he attends his daughter
Aquinnah’s graduation. “You look good Dad,” she says.
“Thanks, I used to be on TV”. He’s a natural Dad and the
way he connects with his four kids is a recurring theme.
INSPIRING—In his own words, Michael J. Fox says his latest
book “tells the story of how he made peace with the disease”.
There are plenty of laugh-out-loud moments and Fox has
a particular turn of phrase that is endearing. After
watching him on the big screen for most of my life, I know
his voice, his sense of humour.
His two previous bestselling memoirs, Lucky Man and
Always Looking Up, dealt with how he came to terms with
the illness, all the while exhibiting his iconic optimism.
No Time Like the Future reassesses this outlook, as events
in the past decade presented additional challenges. And
boy he has had his fair share of challenges. On top of his
PD, in 2018 Fox underwent surgery to remove a benign
tumour on his spine.
The extensive physical therapy to come was followed by a
calamitous fall in his Manhattan home.
In the tumble, Fox shattered his left arm, and he was back
in surgery with a stainless steel plate and 19 screws
inserted into his arm. His medical team were most
concerned about how the fall would affect their
handiwork in his spinal surgery.
Fox had been humbled and his everlasting optimistic
spirit was bruised but not broken. Since then, his
challenges have increased.
“It got worse,” Fox said recently. “I broke my cheek, then
my hand, then my shoulder, had a replacement shoulder
put in and broke my [right] arm, then I broke my elbow.
I’m 61 years old, and I’m feeling it a little bit more.
“Life is interesting. It deals you these things.”
Of course, people with spinal cord impairments face
numerous challenges in their lives every day.
It’s not easy. Fox’s book shows it’s not what happens to
you, it is how you respond.
2. Share what you are going through
His writing is powerful because he tells exactly how he
was feeling in that moment. The conversation with
himself after he fractures his arm is self-berating and raw.
“You idiot. Do you realise what you have done? You
screwed it all up.” He comes around and says sorry to all
of the people he feels he let down by being too gung-ho.
His friends, family and helpers support him through the
hard times because he lets them in. He is real.
3. Something to look forward to
Through all the hard times, Fox continues his acting
career with some success. It keeps him going and gets him
out of bed in the morning. But the thing he always looks
forward to is golf. He loves the game. “Through the years I
continue playing because the game becomes an escape, a
relief and release from preoccupation with my health
situation. When you’re golfing all you can think about is
golf.” We all need something to look forward to.
4. Man’s best friend
His relationship with his dog Gus (a Great Dane-Labrador)
is hard to sum up. He calls Gus his wonder-dog and
describes his friendship with such love and affection. He
is the ultimate companion. “Gus keeps me moving, he
keeps me present, and in an important way, he keeps me
honest”. The reference to the scene in the movie Once
Upon A Time in Hollywood with Brad Pitt and his dog is
also superb. That’s it. I’m getting a dog.
5. He’s the same with everyone
Like he says in the video promoting the book. “I hope some
of these stories will make you laugh or smile or see pieces
of your own life in there. After all we are all connected by
the same chain of humanity.” There are many examples of
this in the book—Fox treats everyone with respect. That is
a great mark of a genuinely good person.

SPINAL NETWORK NEWS 5
Supporting
Positive Futures
Hans Wouters
CEO’s Column
—Hans Wouters
I regularly get to witness
first-hand the appreciation
that individuals and their
whānau have for our team.
MATES —Allan Bean and Andrew Hall at
the picnic to honour Dr Angelo Anthony
Honour where honour is due.
That saying originated in the Bible in the book of Romans
and it is still as relevant today as it ever has been. This
year the NZ Spinal Trust honoured two men who meant a
huge amount to us and gave a lot to the spinal
community—one very publicly and one who tirelessly
worked behind the scenes out of the limelight.
Following 12 years on the NZST Board with the final three
and a half years as Chair, Noel Walton retired at the AGM.
Noel's calm disposition and wise head helped steer the
Trust from its early days of living hand to mouth to
financial sustainability with a very bright future.
As Noel would tell you “The Chair - CEO relationship is
very important” and he meant it. My tenure as a young
CEO has been significantly influenced by Noel as we
enjoyed an enviable working relationship. We will all miss
him and at a small function recently we honoured Noel,
his efforts and sacrifices for the Trust, and presented him
with a beautiful bespoke award. It was lovely to have
Noel's wife Brigitte witness the love and appreciation for
him as she has supported him all the way in the face of
mounting business and life pressures. Noel intends to
remain connected with us and should circumstances
permit would like to serve with us again in the future. We
look forward to that day and are incredibly grateful to
Noel for all he has done for the New Zealand spinal
community through his board tenure.
Readers will recall that our beloved Dr Angelo Anthony
passed away in November 2021. On the day of Angelo's
funeral, we heard of many who wished to attend and show
their respects however COVID-19 put paid to that.
Numbers allowed to gather were severely restricted and
so we suggested to Angelo's family and close friends the
idea of having a memorial event open to the public once
the Covid restrictions had eased. A story in SNN this
month details how we fulfilled that promise. However, I
wanted to say what a tremendous honour and privilege it
was for the NZ Spinal Trust to host a picnic in Dr A’s
memory at McCormacks Bay in Christchurch not far from
his old home. I had the pleasure of being MC and held the
microphone for many of those who spoke. Emotions
flowed and stories of the 'Hot Finger' and other inventive
ideas that Angelo had were revealed.
Sadly, we are unlikely to ever encounter another Dr A type
personality who would mysteriously appear at bedsides in
the middle of the night on his day off because "I have been
thinking about your problem". Following the memorial
Angelo’s daughter Nelunka wrote to me and expressed her
gratitude for the effort the NZST had put into the
memorial, she wrote “I really enjoyed hearing how Dad's
work has impacted so many. In many ways it has made me
reflect on my own practice in health and I see now how a
lot of what I do and how I do it has come from Dad's
influence. Sometimes you don't see what is right there in
front of you!”
I regularly get to witness first-hand the appreciation that
individuals and their whānau have for our team and for
the lengths we will go to to support positive futures. A not
so secret component to wellbeing is gratitude and when
one genuinely appreciates someone and looks them in the
eye and says "thank you", it really is as good for you as it is
for them. I also get to hear from the community the
extreme gratitude felt towards whānau and friends who
walk along side a newly impaired person. Give yourself
and them a boost and let them know just how much you
love them and appreciate what they are doing for you. It
will do you and them some good.

NEW ZEALAND SPINAL TRUST 6
—Hans Wouters
It was lovely to have Noel's
wife Brigitte witness the
love and appreciation.
Finally a quick update regarding the new community
wide peer support initiative funded by ACC. We are now
three quarters of the way through the two year Proof of
Concept program and wow it sure is hitting the mark.
We are so appreciative of our friends at Spinal Support NZ
in Auckland who have their shoulder to the wheel as
firmly as we do. Together our two organisations are
making a significant difference across the motu to the
lives of those individuals and their whānau living with
the effects of spinal cord impairment. Thanks for reading
the SNN I hope you will find it an uplifting experience
and you come away feeling grateful to have done so.
GOOD MAN—Noel Walton would tell you “The
Chair - CEO relationship is very important”
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SPINAL NETWORK NEWS
Fadiel Italiana
7
Driving Hand Controls.
For those who
totalability.com.au

NEW ZEALAND SPINAL TRUST 8
Helping Others After
a Life Changing Injury
Johnny Bourke's story shows what is possible if you never give up.
FINDING PERSPECTIVE—Johnny says: “I realised whether my body was paralysed or not. I still really valued and loved my body.”
After breaking his neck in a surfing accident
when he was 22, Johnny has gone onto
achieve a stellar academic career. He has
recently been employed as a Research Fellow
at the University of Sydney.
Dr Johnny Bourke always tells his 10-year-old twin boys
to be brave. Now it was his turn.
The 39-year-old tetraplegic from Christchurch has
recently started a two-year placement as a Research
Fellow at the University of Sydney.
His new role will focus on how to engage people with
disabilities in the research process.
—Dr Johnny Bourke
When you wake up that
morning you never know
it’s going to be the day that
changes your life forever.
It comes on the back of Johnny being awarded the
Canterbury Medical Research Fund Emerging Researcher
Fellowship for 2022 examining positive relationships
between disabled people and support workers.

SPINAL NETWORK NEWS 9
—Dr Johnny Bourke
I felt like I had been taken
away from society and
everyone else was still out
there having a great time.
“It’s important because the disability health carers
workforce is under pressure with the amount of carers
available, their value and their pay,” he says. “We need to
understand what makes those good relationships work in
order for the sector to be strengthened.”
His Sydney posting is a huge honour but has also caused
Johnny a few sleepless nights leaving behind the support
he needs while living with a high-level spinal injury.
“My wife Corrin and I knew that if we didn’t try, we would
always regret it,” he says from his new home in Cronulla.
“We wanted to give it our best shot. We keep telling our
kids that all we want you to do is try and give it a go, so we
had to be role models in that respect.”
HARD TIMES—Johnny was flown to
Singapore to have surgery to stabilise his spine.
The planning for the move across the Tasman began in
May last year. Moving countries as a tetraplegic with a
young family was a daunting challenge.
Part of the appeal of the role at the John Walsh Centre
for Rehabilitation Research was going outside of his
comfort zone.
“When you have a spinal cord impairment, you feel like
you are constantly outside of your comfort zone whether
it is dealing with pain or just getting up in the morning or
dealing with accessibility in the community.”
INTO MY ARMS—Johnny says seeing Nick Cave and the Bad Seeds was one of the best moments of his time in Sydney so far.

NEW ZEALAND SPINAL TRUST 10
My PhD represents that I
can still achieve awesome
things after my injury.
—Johnny Bourke
“I didn’t want to be at a Spinal Unit, paralysed in a
hospital bed looking out the window at the frost and
unsure what life was going to be like,” he says.
“I wanted to be able bodied and running around the
beach in Indonesia in my shorts. I had to try and focus on
the things I could control. I started to learn about life with
a spinal cord injury.”
He remembers feeling like he was living life in a glass jar.
“I felt like I had been taken away from society and
everyone else was still out there having a great time.
I felt trapped.”
When Johnny was in the Spinal Unit, he became good
friends with Australian Jai Donnelly in the bed next
to him who was an incomplete paraplegic in a
snowboarding accident.
“We stayed friends and I got to know his family well. To
cut a long story short, years later I married his younger
sister Corrin, and we had twin boys.”
Five months into his rehab, Johnny was struggling. He
had a turning point in his outlook.
FAMILY TIES—Johnny and Corrin and their twin boys are a tight unit.
“The day my life changed forever”
Johnny has clear memories of his surfing accident in 2005.
“When you wake up that morning, you never know it’s
going to be the day that changes your life forever,” he says.
Johnny was five days into a three-month surfing trip
around Southeast Asia. He wiped out on a wave in
Indonesia and his head was rammed into the sand and
reef. It pushed his head into his chest with some real
force. The impact crushed Johnny’s C4 and C5 vertebrae.
“I was floating face down in the water and was lucky there
was another surfer there to save me. He pulled me out of
the water.”
Johnny was flown to Singapore to have surgery to stabilise
his spine. He was in intensive care for three weeks.
“It was a really intense and challenging time for me and
my family,” he says. “That was the start of my journey of
living with a spinal cord impairment.”
Long road to recovery
Johnny was flown home and stayed at the Burwood
Spinal Unit for six months.
When he returned home, he was pretty deflated.
He was chatting with his family and talking about
whether your identity is in your head or in your body.
“One of my family members said: ‘what if we took your
brain and implanted it into someone else’s walking body,
would that make you happy?’ That was when I realised
whether my body was paralysed or not, I still really
valued and loved my body. It really hit home for me.
“From that moment on I realised I have a lot of love for
myself. I still have a lot to achieve in this world and I am
going to give it a good crack.”
When Johnny left the Spinal Unit, he decided to go to
university and study so that he could help make a
difference.
Making a difference for others
After his accident Johnny never thought working for an
international university would be possible.
“Every morning when I go into work, I pinch myself. I
catch the train and I go past the Sydney Opera House and
I can see the Harbour Bridge. It still hasn’t sunken in to
be honest.”
The best moment of his time so far in Sydney was when
his wife Corrin surprised him.
She told Johnny: “I’ll take you out for a meal down by the
Sydney Opera House.” They actually went to see Nick

SPINAL NETWORK NEWS 11
Cave and the Bad Seeds, who is one of his favourite
musicians.
“We went to the show at the Sydney Opera House, and it
was an incredible moment,” he says.
“I actually got to hang out with him for a short moment.
He often walks through the crowd and he walked up to me
and grabbed my hand and we sang for a little bit. I am a
massive fan so that’s something I’ll always remember.”
It was a special moment in his adopted home, after years
of hard work.
Johnny took his recovery one step at a time and excelled
in his academic study.
He has a PhD from the University of Canterbury, a Master
of Health Sciences (rehab) from the University of Otago
and a BA (psych) from Massey University.
“People would say to me that you have to be a really smart
to do a PhD but from my experience it was more about not
giving up and persevering until you get to the end.”
Johnny wants to help improve life for those living with a
disability.
He has simple advice for those who are at the start of their
life with a spinal injury.
“It’s easy to look at the downsides of living with a spinal
cord injury. They are often just cultural ideas about how
awful it is to be paralysed, you have to rely on others or
whatever, but you’ll be really surprised about how good it
can be.
“As long as you believe in possibilities and then have
the courage to go and achieve them you can live a
great life.”
“My PhD represents that I can still achieve awesome
things after my injury. It was a real personal journey and I
typed out my thesis with my little finger.
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NEW ZEALAND SPINAL TRUST 12
What Aimee Did…
Every year Aimee Borich generously offers her time and energy
to make a difference to others (and the Trust) at Christmas.
—Aimee Borich
Wrapping is my happy place,
I love gift wrapping!
Aimee was introduced to the supportive work of the NZ
Spinal Trust when she was working on the Spinal Ward at
Burwood Hospital a few years ago. She’s one of many Te
Whatu Ora Waitaha Canterbury staff who help over the
frantic two weeks of wrapping action, in addition to many
others from across our wider community.
Aimee is always “on” … bright, smiley, enthusiastic,
unflappable. She finds creative ways to approach the
wrapping that keep the task fresh.
“Christmas / gift wrapping is just so much fun!! It’s a great
way to challenge your brain to see how you can wrap
something that isn’t perfectly square.
“There have been some interesting ones over the years
(usually jumbo-sized, oddly shaped, or pointy/pokey)
which feels so smugly satisfying once successfully
wrapped.
GRATEFUL—The Palms Shopping Centre provides the NZST the
opportunity each year to raise money and be seen in our community.
It’s not often that we are not only willing to
feed someone’s addiction, but grateful to be
able to do so. Aimee Borich is addicted to
wrapping and we happily feed that addiction
every Christmas.
In the lead up to Christmas, The Palms Shopping Centre
in Christchurch provide us with a wrapping station and
all the tools needed to wrap gifts. For two weeks we staff
this space and wrap gifts for a donation to NZ Spinal
Trust’s work. There’s a total of 46 shifts involving up to
128 people. It covers weekdays and weekends, late night
shopping and Christmas Eve.
“Although equally, being able to wrap something simple
and square / rectangular, with ribbon decoration, in well
under a minute is almost just as satisfying especially
seeing the stunned look on the customer’s face that you’re
already done before they can get their donation paid.”
And it’s that kind of attitude that’s earned her the title of
‘Chief Elf—Wrapping dept’.
We’re appreciative that The Palms Shopping Centre
provides this opportunity each year to raise money and
be seen in our community. But without the support of
awesome volunteers like Aimee, we couldn’t possibly
manage it.
Last year Aimee happily took on 11 shifts. She was there on
the first day, and also on the last. She took on double shifts
where there were gaps that couldn’t be filled and was more
than happy to be tagged in at the last minute where
possible if people had to cancel (due to COVID-19 etc.).
Aimee says “Wrapping is my happy place, I love gift
wrapping!”

SPINAL NETWORK NEWS 13
Learning Her Craft
With the Best
For Bailley Unahi her sit-skiing trip to Canada this NZ summer
has been a turning point.
ALL SMILES—Bailley Unahi (far right) loves nothing more than being up the mountain.
Bailley Unahi is not one to die wondering.
The 26-year-old wants to make the most of
every opportunity that comes her way.
Bailley has spent the Kiwi summer in Canada with the
Snow Sports New Zealand Para Alpine Development
team. They have been training out of Nakiska which held
the alpine events for the 1988 Winter Olympics. It has
been an unreal experience for the girl from Winton. And a
world away from where she was in 2016.
Bailley sustained a severed spinal cord after being
crushed in a balcony collapse at a Six60 concert in
Dunedin. The proud Māori has overcome the hard times
and is now enjoying every moment of representing
Aotearoa on the world stage. She took some time out from
the slopes to give SNN readers an insight to life on tour.
I want people to value
the Paralympics.
—Bailley Unahi
You’ve spent our summer up in Canada sit-skiing,
what has the experience been like?
This is my second time in Canada and I love it here. The
first time I came here was for the 2019/2020 Northern
Hemisphere winter, but I ended up coming home early
due to the COVID-19 pandemic. Canada is a very friendly
place and it’s very easy to cross the roads as all of the cars
just stop no matter what, and let you cross!

NEW ZEALAND SPINAL TRUST 14
Super G is a speed event we aren't able to practice back in
New Zealand so being able to put the long skis (2m) on
and get some speed is such an adrenaline rush. We also
saw a moose on the side of the road on our drive home
from Colorado which was unreal.
What has it been like travelling with the Kiwi
contingent and being in that environment?
Travelling with Kiwis is, as expected, a lot of sarcasm and
dry jokes that the Canadians often take to heart, and then
getting asked if we are Aussies or Kiwis is a daily
occurrence. We train with athletes from all over the world
including the Canadians, British and Aussies which
makes for a pretty unique training environment.
What has it meant to you to achieve a number of podium
finishes and show you can compete at this high level?
SUCCESS—Bailley with one of her third-place finishes in Canada.
It can be frustrating relying on public transport and
wheelchair access is definitely not as good as in New
Zealand which makes me appreciate it when I return
home. Every house has a basement so there are generally
stairs to get inside! Although we have a wild deer as our
backyard pet!
What are the mountains like to sit-ski on? Do you have
any favourite mountains/slopes?
The mountains here are huge in comparison to New
Zealand and have some of the most epic views. The biggest
difference would be skiing between trees and not having to
drive up a mountain access road as the snow is everywhere.
Travelling to the other side of the world has its
challenges for anyone, but doing it with a spinal cord
impairment is a bigger mission, how have you found it?
It can be frustrating when public transport isn’t accessible
and footpaths and roads aren’t cleared after a snowfall
which can make navigating a bit tricky.
But at the same time, there is usually a way to work
around it. Keeping your wheelchair well looked after to
avoid the wheels seizing up due to always being wet is a
good habit to get into and try to keep as warm as possible!
The temperatures get down to negative 30 degrees Celsius
and we skied for a few days in this weather in December.
Unfortunately, I developed superficial frostbite as I
couldn’t tell how cold my legs and feet were below the
level of my injury.
What have been some of your highlights of the tour so far?
I have been lucky enough to have travelled down to Colorado
which we spent two days driving from Calgary, Alberta to
compete at the FIS (International Ski and Snowboard
Federation) Para races. My highlight was achieving a
bronze medal in Super G in a field with Paralympians.
It has been a huge confidence boost achieving podiums
against Paralympians and that time and dedication to
this sport is paying off. It also highlights the areas I need
to strengthen to get to the next level and ultimately
achieve my goal of representing New Zealand at the next
Winter Paralympics in Milan 2026.
I am also thankful to have a job that has been flexible and
supported me in having extended leave to be over here
and train to make the most of the long Northern
Hemisphere winters and world-class resorts.
The pinnacle event for the season is the Canada / USA
Para Alpine Championships which I am looking forward
to performing what we have been putting in at training
these last few months.
The Winter Paralympics is obviously a massive goal
for you—what would it mean to qualify?
To qualify for the Winter Paralympics in 2026 and
represent New Zealand on the world stage would be a
huge achievement. Not only for myself but as a
representative for a Māori woman living with a spinal
cord injury, for my home town Winton and for all my
friends and family who have supported my dream and
believed in me.
I want people to value the Paralympics, to want to watch
and support the athletes and see how epic para-alpine
skiing is. From athletes skiing with vision impairment,
amputations and SCIs.
When you had your accident in 2016, did you think
that you’d believe that seven years later you'd be
skiing in Canada and representing New Zealand?
Before my SCI in 2016, I was oblivious to the disability
community and particularly adaptive sports. Growing up
I played a lot of team sports like netball, rugby and touch
which became quite challenging as a wheelchair user. I
had only skied a few times prior to my accident.
I was very scared to try skiing as a paraplegic with all the
unknowns on how to navigate the logistics as a
wheelchair user like: is the ski resort accessible, will I be
able to access the bathrooms, how do I get in and out of
the sit-ski, or on and off the chairlift, how do I get up once
I fall and so on.

SPINAL NETWORK NEWS 15
—Bailley Unahi
Your family must be proud of how you are excelling
over there?
Being able to ski in the
same capacity as my
able-bodied peers is
the best feeling.
There are a lot of unknowns but it is all possible and
getting to the point where I can go skiing independently
with my friends and family, be in nature, and explore the
mountains in the same capacity as my able-bodied peers
is the best feeling.
Being able to ski overseas in Canada, the USA and
represent New Zealand is hard to believe that such
amazing opportunities, experiences and friendships can
come from such a sudden and traumatic life-changing
event that is often perceived negatively by society.
My family have been nothing but supportive of my
dreams and have enabled me to be here. They think I am
crazy doing back-to-back winters but have been along for
this journey with me—the highs and the lows of living
with a spinal cord injury and all that entails.
What advice do you offer to other people who are at the
start of their journey with a spinal cord impairment,
and wanting to travel or take up their own pursuit?
The best thing I did was apply for the Outward Bound
Activate course where I learned how to adapt to unfamiliar
situations, get in the outdoors and get good at failing. It’s
scary doing things again you once did with ease prior to
your SCI or new things altogether whether that’s going
back to studying, working, skiing or going travelling but it
is possible and it can lead to a new passion, friendships,
experiences, and a meaningful life.
To find out more about Outward Bound go to
outwardbound.co.nz/courses/activate

NEW ZEALAND SPINAL TRUST 16
The Launch of the
Para Sport Collective
It’s a three-year initiative supporting pre-high performance
para athletes and coaches.
PERSPECTIVE—Paralympian Scott Martlew says getting back into sport gave him hope and a renewed perspective. Credit: Getty Images.
Pre-high performance para athletes in
New Zealand today need a community
of like-minded individuals.
Compared to many non-disabled sports, there are lower
numbers of athletes within any individual para sport, and
individual Para athletes have a wide range of disabilities.
When sharing experiences with peers is enabled, it leads
to greater inclusion in sport, and helps both wellbeing
and sporting progress.
The story is similar for para sport coaches: knowledge
exchange and peer support are extremely valuable, but
coaches are often dispersed across different para sports
and different regions.
—Paralympics NZ
Para athletes need the
right environment to build
confidence, skills, capabilities
and connections.
“Through our consultation with para athletes and
coaches we know that there is an area in the sport
pathway that some describe as a ‘grey area’,” says
Paralympics New Zealand’s Chief Executive Fiona Allan.

SPINAL NETWORK NEWS 17
“Where para athletes and coaches have the ambition and
desire to perform at a high level, but they are not quite at a
level where they receive high performance support.
They need the right environment to build confidence,
skills, capabilities and connections.”
PNZ and ACC are looking to address this gap and support
para athletes and coaches with the launch of the new Para
Sport Collective.
The Collective brings together cohorts of pre-high
performance para athletes and coaches across a variety of
para sports. As well as connection, the cohorts will gain
knowledge and skills to support their development.
ACC shares PNZ’s aims to motivate and inspire disabled
New Zealanders to live full and active lives by getting
involved in para sport.
“We’re really excited about the proactive approach of the
Para Sport Collective to support para athletes and coaches
and build their skills and confidence,” says ACC Chief
Executive Megan Main.
“We see first-hand the difference that sport can make to
people after a life-changing accident.
“We want to generate opportunities for disabled New
Zealanders—many of our clients included—to participate
and compete in para sport and we value the partnership
with Paralympics New Zealand to achieve this.”
The Para Sport Collective has been co-designed with para
athletes, coaches and National Sport Organisations.
It aligns with and complements existing national and
regional programmes, providing in-person camps and
virtual support.
—ACC CEO Megan Main
We see first-hand the
difference that sport can
make to people after a
life-changing accident.
The Para Sport Collective will include two intakes of up to
30 para athletes and 20 coaches, each with three national
in-person camps and bi-monthly virtual connection
opportunities.
In total up to 60 para athletes and 40 coaches will come
together to connect and develop through the three-year
duration of the Para Sport Collective.
Pre-high performance para athletes may be eligible for
the Para Sport Collective if they have demonstrated
future winning capabilities against international
benchmarks and show the required attitude and
attributes for international success.
Coaches of pre-high performance para athletes (or those
aspiring to coach pre-high performance para sport) must
show a commitment to engaging and contributing to the
Collective.
National Sport Organisations (NSOs) nominate para
athletes and coaches for the Para Sport Collective.
Interested pre-high performance para athletes and
coaches should speak to their NSO.
BIG ANNOUNCEMENT—Para athlete Siobhan Terry, ACC CEO Megan Main, Paralympics NZ CEO Fiona Allan and Paralympics NZ
Para cycling development coach Jack Cooper were at the announcement of the Para Sport Collective. Photo Credit: Getty Images.

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SPINAL NETWORK NEWS 19
“You Just Watch Us!”
The intrepid travels and adventures of Christine and Ron Blake.
GREAT MATES—Christine and Ron Blake have enjoyed some incredible experiences together.
It was a day much like any other in 2009 for
avid recreational divers Ron and Christine
Blake as they excitedly packed and prepared
their boat for their three-week holiday.
They were heading to the Bay of Islands with friends. It
was picture perfect on their first day, as they started out
on their trip boating out to their favourite dive spot in the
remote Mokohinau Islands, 100km northeast of
Auckland. Arriving at the site, Christine and Ron entered
the water while their friend Ian manned the boat.
Twenty minutes into the dive Christine felt something
was not quite right. She signalled to Ron that she was
heading back up. Christine was becoming increasingly
dizzy as she arrived at her safety stop just below the
surface. Ian was immediately alerted when seeing her fins
surfacing first as opposed to her head, knew something
was wrong. Bobbing listlessly, Christine found that she
had no sensation in her legs, and no strength in her arms
as she slowly started to sink. Her recollection was “I knew
I was going to drown but surprisingly it wasn’t scary.” Ron
surfaced beside her and stopped her descent by inflating
her buoyancy compensator device (BCD). With Ian’s help,
—Christine Blake
I knew I was going to drown
but surprisingly it wasn’t scary.
Ron managed to lift Christine back onto the boat.
Christine has little recollection of those moments on the
boat. After a while, the coast guard and helicopter arrived
winching her up and on board before flying her to North
Shore hospital.
Initial indications were that Christine had suffered a
stroke. However, an MRI scan revealed a very severe case
of decompression sickness known as the bends.
The bends occur as a diver surfaces and nitrogen bubbles
form in their blood and tissues. This had compromised
her spinal cord. Christine’s condition was so severe that
she underwent 10 days in a de-compression chamber at
the Devonport Naval Base, where she breathed pure
oxygen to assist in restoring normal blood flow to in turn
restore function to her limbs.

NEW ZEALAND SPINAL TRUST 20
FEATHERY FRIENDS—Christine visited Antarctica in 2014, which was an incredible experience.
Christine subsequently found herself at the Auckland
Spinal Rehabilitation Unit. I was thinking “I’m going to be
fine” and being a woman of dogged determination, she
threw herself into physio and her rehabilitation. “I was
totally focused on it. I’d get up at 6am in the morning,
much to the annoyance of the staff," she laughs. Not
wanting to be the cause of annoyance, she brokered a
reciprocal agreement with the nursing staff providing
them with computer lessons in the evenings. Christine
relished the pool sessions—loving the water and
swimming but there was an unfortunate clash at times
with her doctor’s appointments. With her priorities
determined, she’d duly turn up for swimming lessons,
advising the pool instructors her doctor’s appointment
had been delayed.
Christine at the time of her accident was at the height of
her career, managing together with Ron their own very
successful adventure travel business. Six weeks after
arriving home from four months in the spinal unit and
navigating a new life as a paraplegic, Christine and Ron set
off on an overseas trip of their own. Air New Zealand had
kindly upgraded tickets for flights to Vancouver, and they
planned to join a cruise in Vancouver despite caution from
those around them. They were determined to complete the
holiday they didn’t have (Christine’s accident occurred on
the first day of their holiday). “We had a really good time,”
Christine says nonchalantly “we just kept going from
there.” Christine has a mind and determination of steel
and is very much in charge of her destiny with the support
of her equally determined husband.
Christine brushes off the challenges with a good dose of
humour, describing some of the challenges she faced on
the cruise from Vancouver. She describes an incident of
heading back to her room on the lower deck, pushing the
button on the lift only to discover, as she wheeled across
Christine and Ron carry
three things with them, a
good sense of humour, a high
degree of adaptability, and
an ability to remain calm.
the elevator bay, the doors closing in front of her. This
process repeated itself three or four times before she
finally caught the lift. Arriving back at the top deck nearly
30 minutes later she is greeted by Ron asking, “what took
you so long?” She then describes the challenge of what
had happened, and they both share a laugh and carry on
enjoying their trip. “Things just take longer” she says.
One thing that wasn’t anticipated however was the
reactions of other tourists. On a subsequent cruise to
Antarctica in 2014, a fellow passenger exclaims, “I didn’t
realise they took people like you on these trips?” Fighting
back a reaction Christine decided a measured approach
was in order by biding her time—knowing they were both
not leaving this ship any time soon. Sure enough, three
days later the ship hit rough seas, and not partial to
sickness, Christine was hoisting herself up the railings of
the stairs to the bridge to “get a better view of the waves
crashing over the bow” where she encountered the
woman again on the stairs of the narrow companionway.
As the woman was gingerly and slowly coming down and
looking very green Christine seized the moment by saying
“see you’re just like me after all.” “We became friends
after that," Christine chimes. They went on to explore the

SPINAL NETWORK NEWS 21
I didn’t realise they took
people like you on these
trips? I had to fight to
hold back a reaction.
—Christine Blake
icy expanse of Antarctica, visiting Scott's Hut with the
assistance of adaptive wheels with specially fitted casters
and skis, gifted to her by a Swedish inventor. After an
initial stop to socialize with the local penguins, Christine
navigated steep paths to reach Shackleton's Hut, with help
from Ron and another passenger who insisted on helping.
As exhilarating as international travel is, it was to be only
a precursor to a new level of adventure travel—to cycle
New Zealand’s iconic cycle trails! Cycling the Otago Rail
Trail was a dream of Ron’s brother Les who was facing
terminal cancer. So in 2015 as a family, they embarked on
the trip sharing precious unforgettable times together.
Christine, with Trikes New Zealand’s support, hired a
hand trike with power assist. Christine enjoyed the power
assist feature so much that her enthusiastic use of it
exhausted the battery resulting in her having to manually
hand crank for 3km. Sadly, Les passed away one year
later, having fulfilled his dream, and fuelled Christine’s
adventurous nature in the process. It started a new
chapter of adventures that she continues to enjoy.
Christine and Ron have gone on to complete the Dunstan,
Northland to Napier, Old Ghost and Old Coach Trails to
name a few. The Alps to Ocean trail is also in their sights
to complete this April after an initial partial attempt. “I
wouldn’t say it is always easy to do. You’ve got to
improvise. Navigating gates which are narrow and cattle
grates which are not passable without lifting the trike
over. It can be challenging dealing with steep sections of
track and switchbacks.”
All of this would not be possible without the unwavering
and dogged support of Ron. Assisting Christine without
compromising her independence. When faced with the
reactions of travel operators to their travel plans with
statements of “this is not suitable for someone with a
disability” Ron’s response is “you just watch us!”
Knowing travel can test the patience of most of us,
Christine and Ron carry three things with them, which
require ‘no baggage allowance.’ A good sense of humour, a
high degree of adaptability, and an ability to remain
calm. Preparation and planning, of course, are always key
so “do your homework” says Christine.
Her attitude to travel in spite of the challenges as a
paraplegic is inspirational. “You always have to think of
other people…they don’t know” further adding “it’s a case
of enlightening them. The more you’re out there, the more
people see you, they will be more understanding. Then,
more people with disabilities will go out, it’s perpetual.”
Christine’s next dream is to do a ‘bike and barge’ trip
through Europe. And so, while Christine and Ron go
about doing what they’ve always done, in their
characteristic unflappable fashion, their influence on
those around them tour operators, fellow tourists, and
cyclists alike, model what is truly possible with an
appetite for adventure, a dogged determination and a
good dose of Kiwi ingenuity.
DETERMINED—Have bike, will travel. Christine and Ron always look at what they can do, not what they can’t.

NEW ZEALAND SPINAL TRUST 22
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SPINAL NETWORK NEWS 23
Finding the Meaning
of Matariki
Lee Taniwha reflects on his journey with a spinal cord impairment.
LOOKING UP—Lee Taniwha says Matariki is a special time for him, since
HAPPY he has connected PLACE: The with Creative tikanga Centre Māori. was Photo established credit: Shane in the Wenzlick.
1980s.
For Lee Taniwha, celebrating Matariki has
added significance.
Matariki—celebrated on Friday 14 July this year—is a
special occasion on the New Zealand calendar which
marks the start of the Māori New Year.
Last year for the first time, Matariki was celebrated with a
public holiday. It is signified by the Matariki cluster of
stars reappearing in the night sky. It marks a time to
reflect on the past year, celebrate the present, and plan for
the year ahead.
For Lee, it is more than that. The 30-year-old from Ōtara
became a tetraplegic when he was 13 years old. He jumped
into his cousin’s pool, misjudged the depth and broke his
neck. He was lucky to survive.
“I remember looking at my cousin in total panic,” he says.
“I was counting the seconds I had left. I was sure that was
it, that I was going to die. I was hanging on until my
last breath.”
Lee completed a long and demanding rehabilitation.
During his recovery Lee wanted to learn more about his
Māori culture. He says connecting with tikanga Māori
played a key role in his recovery.
The way Māori view being
disabled is tapu (sacred) and
Matariki is a good example.
“I’ve been raised in New Zealand, I think in English
because that’s my language but I needed to think in
Māori,” he says.
The change had a positive impact and now he looks at
his disability with more gratitude.
Connecting with tikanga Māori
—Lee Taniwha
“Many old Māori stories tell of people who were maimed
or disabled, most of them were creators of big change,” he
says. “The way Māori view being disabled is tapu (sacred)
and Matariki is a good example. Matariki is named after
Tāwhirimātea, a blind god.”
Māori legend says that Tāwhirimātea, the blind god of
winds, flung his broken eyes into the heavens in a fit of

NEW ZEALAND SPINAL TRUST 24
MAKING CHANGE—Lee Taniwha is passionate about making a difference for Māori. Photo credit: Shane Wenzlick.
grief. They became the stars we know as Matariki,
Tupu-ā-rangi, Waipuna-ā-rangi, Waitī, Tupu-ā-nuku,
Ururangi, Waitā, Pōhutukawa and Hiwa-i-te-rangi.
“Having a blind god is the reason for the Māori New Year.
That was a big eye opener for me—a different perspective
for how I should see myself. I can create big change.”
And he is.
Going full circle
Lee works for Spinal Support NZ, a not-for-profit based at
the Auckland Spinal Unit, as a Peer Support worker. The
organisation wanted staff at the spinal unit to talk to
patients about their journey and support them. Lee was
always at the gym working out and talking to people, so
he was a natural fit.
“It’s a huge privilege for me,” he says. “You are meeting
people at a life changing moment. It’s good just to be able
to listen and make a difference. I try to help them find
hope again.”
During his recovery Lee says the staff at the Auckland
Spinal Rehabilitation Unit (ASRU) knew what he was
going through. They also delivered some tough love.
“When I was in rehab, it was a crack up time. They would
say to me loudly ‘You don’t belong in nappies. That is not
what you are here for’,” he says with a laugh.
Lee wants to help change lives. “I know I could’ve died
that day, so I want to dedicate myself to helping others.
When you have a bad accident, life will be hard, you can’t
get around that, but you can still have a great life, just
keep fighting.”
Making a difference for Māori
Lee has seen the work ACC is doing first-hand both as a
client and as a provider. “The support of ACC has made a
huge difference to my life. Everything that I got in my
rehab was provided by them and they gave me a chance to
start my life again.”
Alongside covering all aspects of his rehab, during the
early stages of his injury, Lee couldn’t use his arms so
Life will be hard, you can’t
get around that, but you
can still have a great life,
just keep fighting.
—Lee Taniwha
ACC provided him with a computer. This was a huge help
while he was at school.
And that association has continued in his work for Spinal
Support NZ. In 2021 Lee was invited to a meeting with
ACC on managing pressure injuries. They wanted a Māori
perspective to understand how they could improve access
to the support and care that is available to them if they
got injured.
“Having the opportunity to speak to how ACC can
improve has been hugely beneficial and it’s nice to see
them reach out, hear the Māori perspective and show they
really care.”
Being part of a fair and equitable health system is
something that Lee is passionate about. He knows that
not all Māori have had his experience. ACC data shows
Māori are twice as likely to experience a serious injury,
but around 18 percent less likely to make an ACC claim.
“We acknowledge this inequity,” says Michelle Murray,
ACC’s Tumu Pae Ora (Chief Māori and Equity Officer). “We
have set the stage for increased trust and meaningful
change—a new chapter in ACC’s relationship with Māori
that has already begun.”
Lee is proud to be part of the solution and pass on his
experience. “The time I have had with them has shifted
my perspective. It was clear they listened, and they care.
It’s an amazing system and we need to ensure everyone
gets the help and support they need.”

SPINAL NETWORK NEWS 25
10 Questions with…
Josh Caldwell
Former Peer and Whānau Support worker reflects on his time
working for the Trust.
MAKING AN IMPACT—Josh will be missed in the NZ Spinal Trust team.
Josh Caldwell has worked for the NZ Spinal
Trust for seven years.
In his role as Peer Support Coordinator at the Burwood
Spinal Unit, and as someone with a lived experience of
spinal cord impairment (SCI) Josh knows first-hand
what patients and their whānau are going through
following an SCI. His reassuring style and easy manner
immediately put people at ease plus his sense of humour
was an added bonus!
Sadly, Josh has left the NZST to take up a new role as
Kaitūhono (Connector/Supporter) with Whānau Whanake
a community based social enterprise. They aim to
reduce negative health indicators for whānau impacted
by chronic health conditions, disability, injury or trauma.
An organisation that aligns with the NZ Spinal Trust!
During his time with the NZST, Josh quickly became
the resident fashionista—always up to date with the
latest fashion trends—his shoes are legendary. The
SNN recently met with Josh to see how he is getting on
in his new role and reminisce about his time working
for the NZST.
—Josh Caldwell
Having the freedom and space
to be who you are in a work
space is so rare these days.
Can you remember what the feeling was like on your
first day at the NZST?
When I first started at the Trust, I never really felt like I
had a first day I kind of just fell right into being a part of
the team. I have so many fond memories at the Trust
some of which I wouldn’t dare recount [laughs] but I will
never forget going and talking with an elderly client and
them saying to me: “You guys are what makes hanging in
there worth it.”
Why did you want to work for the NZST?
I always knew from a young age that my life was going
to be in service of people and for me the NZST was the

NEW ZEALAND SPINAL TRUST 26
I never really felt like I
had a first day I kind of
just fell right into being a
part of the team.
—Josh Caldwell
What makes the NZST a special place to work?
The people are what make the Trust. The team’s passion
and commitment to a common goal to support people and
their whānau with SCI to have a positive future.
What have you moved onto at Whānau Whanake?—
new role and team and responsibilities?
My new role is primarily supporting kaumatua (elders)
and rangatahi (youth) to live and stay well using a
Kaupapa Māori approach no matter who you are and what
you need.
The NZST team becomes a family over time, how hard
was it to leave?
It really was like leaving home and the safety net and
connections I had made over my time at the Trust. It
wasn’t a decision I made easily.
How did the NZST team support you in your work and
as a person?
LIVED EXPERIENCE—Josh says the impact of the
expansion of the Peer and Whānau Support has been huge.
perfect match to be of service to people but to also give back
to a community and an organisation that gave me so much.
I will always remember rolling into the lounge in the spinal
unit (where a temporary library was set up) and having a
great old time connecting with Nancy and Bernadette
talking about life and having the team from peer support
and vocational rehabilitation being so involved in my
journey and supporting me from the beginning.
What was rewarding about your role in Peer Support
and Vocational Rehabilitation?
For me being able to support people and their whānau
through what is often the biggest challenge they have
faced and being allowed to taūtoko (support) them when
they are at their most vulnerable to achieve their goals for
them to live their life their way.
There are so many highlights of being at the Trust but for
me it was the relationships and connections I made that I
hold most dear.
I often hear from friends or people in my life who always
moan about not feeling accepted or comfortable being
themselves at work. I can’t relate as I have since day dot
felt comfortable and safe being myself and who I am.
Having the freedom and space to be who you are in a work
space is so rare these days.
What difference has the expansion of Peer Support
around New Zealand made?
Having support in the community makes a massive
difference to those who need it and at a time when they
need it most. It’s like the safety net you know is
always there.
What advice do you offer to others who are working in
Peer Support and helping others with an SCI?
My main thing is to remember that no matter what, you
are there to support the person and their needs and what
is important to them and their wellbeing.
How would you like to be remembered?
For my lipstick and high heels!!

SPINAL NETWORK NEWS 27
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NEW ZEALAND SPINAL TRUST 28
In His Own Words—
the End of an Era
Brendan Tourelle reflects on his tenure as President of Spinal Support NZ.
LOVE—“Anyone who knows me, knows that sailing is one of my biggest passions”.
Brendan Tourelle has been involved with
Spinal Support New Zealand (SSNZ) on and off
for almost quarter of a century.
In 2023, his five-year tenure as President comes to an end.
In this issue’s edition of ‘In their own words’, Brendan takes
us on a walk down memory lane recalling his spinal cord
impairment, his passion for sailing and his drive to make a
difference for others.
I first started at SSNZ which was then known as TASC
(The Association of Spinal Concerns) in 2000 because I
was at a loose end. I was a newly injured person at home,
looking for something to do.
I had never been on a committee before, so at the time it
was a steep learning curve to understand the committee
format and structure. Since that time, I have been on and
off the committee two or three times.
I first became President of SSNZ in 2018. I had previously
been Vice President during Gavin Parish’s term as
President. Each President has a five-year term. Gavin had
—Brendan Tourelle
I have mixed emotions when
I think about my term as
President coming to an end.
become president when Murray Cohen, who was the
elected president at the time suddenly passed away, and I
became Vice President (VP).
I have enjoyed being involved with SSNZ because it’s
whole reason for being is to help anyone who has
sustained a spinal cord injury, to help lessen the impact
that injury may be causing in their personal lives.
The biggest achievement we have been able to manage
to date is getting the ACC contract to provide Peer and
Whānau Support for the spinal cord impairment
(SCI) population.

SPINAL NETWORK NEWS 29
—Brendan Tourelle
To anyone at the start of
their journey with an SCI:
Give yourself time to grieve.
My passion for sailing comes from wanting to reconnect
with the ocean after my injury. With my previous
knowledge and seamanship, I was able to learn the basics
and improve reasonably quickly.
I have now been fortunate enough to win the NZ National
Champs three times. And to travel to many other
countries representing New Zealand.
I have now been the Chairman of the Sailability Auckland
Branch for 15 years. Sailability is a worldwide organisation
that provides sailing opportunities for any person living
with a disability. We provide this service in a safe and
welcoming environment.
LEGACY—“It would be nice to be remembered as
someone who was an even-handed President.”
This is something I have personally been involved with
for over six years working with our colleagues at NZ
Spinal Trust and ACC to prove this concept was worth
investing in.
So, to have ACC finally grant a two year proof of concept
contract was a big achievement.
Our primary role at SSNZ has always been to support
anyone with a spinal cord injury or impairment, whether
that be through Peer Support, van outings, running an art
class, providing a community garden, or even just
generally having a chat. This is all part of what we do.
I have mixed emotions when I think about my term as
President coming to an end. I look back proudly at what
we have achieved, but in knowing that it has been a lot of
work so there is relief there as well. There will be less
responsibility for me moving forward.
It would be nice to be remembered as someone who was
an even-handed President. That I was able to achieve our
goals and build a better and more positive structure for
our office.
I have learned a huge amount over my career. The best
advice I could give anyone that is working with people
with a spinal cord impairment is to have an open ear, to
listen with a non-judging open heart, and to always give
encouragement.
Anyone who knows me, knows that sailing is one of my
biggest passions. I love everything about it. You are using
the wind and tide to propel yourself across the water.
Given a big enough boat one could cross the oceans using
just the wind. It’s limitless.
Having a sailing simulator at the Spinal Unit has been
great for Sailability Auckland recruitment over the years.
I think we are at around the 40 people mark that have
learnt to sail initially in the simulator, then moved out on
to the water.
It’s a great feeling being able to share a sport that you love,
with someone new, that also gets enjoyment from it,
especially when it’s in a great environment like the sea. I
personally think being on the water is fantastic for the soul.
It’s all a world away from the day my life changed forever.
It was in 1999. I was renovating a shop front in Mt Eden,
when the rung of ladder I was working off, slipped out.
I fell 6m onto a van mirror arm, which bent me
backwards, breaking my back and spinal cord at T-4, and
sustaining many other injuries. My main memory of my
rehabilitation was trying to achieve all the goals in a
timely manner, so I could get home to my family as quick
as possible. I had four kids under eight at the time.
I remember my main goal at the time was not to let my
disability hinder my kids’ lives in any way and to lessen
the impact as much as possible. Although I was suffering
inside, I tried to keep a brave face for my kids. My lovely
wife, Tulip, would tell you I wasn’t always successful.
There were times when I was unable to hide my emotions.
Now, I think it is better to listen to those feelings and be
honest with those around you.
I have often been asked what advice I offer to someone
who is starting their journey with an SCI. I say to them:
Give yourself time to grieve. And if you get an opportunity
to have a go at something new, please do it.
Try not to limit your life too much because of your injury,
because happiness doesn’t always mean the absence of
suffering!

NEW ZEALAND SPINAL TRUST 30
What’s new in the
Resource Centre
April 2023
The Essence of You and Me: an
inspiring and heartwarming true
story of resilience, hope and love
by Kada and Barney Miller, 2018
As a 20-year-old, David 'Barney'
Miller was one of the best surfers on
the New South Wales mid-north coast.
He was looking to go professional. But
then he was involved in a car accident,
and he was told he would never
breathe independently or use his legs
again. Refusing to give in, he defied
the doctors through self-belief, hard
work and sheer guts. Barney plunged
into a depression then met Kada, a
beautiful girl from a country town
who dreamed of becoming a singer.
Together they believe anything is
possible.
The antiviral gut: tackling
pathogens from the inside out by
Robynne Chutkan, 2022
Multiple studies have now confirmed
a dramatic link between the health of
our microbiome—the trillions of
bacteria that live in our digestive
tract—and our likelihood of getting
devastating viral illnesses like
COVID-19. Low-fibre diets, limited
exposure to nature, and overzealous
use of pharmaceuticals have messed
up our microbiome, making many of
us more susceptible to viruses than
we naturally should be. But the good
news is that unlike our genes, our
microbiome is constantly evolving,
offering a pathway back to health for
those who are suffering, and proven
protection for those who want to stay
well. In The Anti-Viral Gut, Dr.
Robynne Chutkan explains this
ground breaking research and offers
a prescriptive plan for anyone trying
to avoid or recover from a viral illness
to rehab their gut microbes and
restore their health.
Somebody I used to know by Wendy
Mitchell, 2018
Wendy Mitchell had a busy job with
the British National Health Service,
raised her two daughters alone, and
spent her weekends running and
climbing mountains. Then, slowly, a
mist settled deep inside the mind she
once knew so well, blurring the world
around her. She didn’t know it then,
but dementia was starting to take
hold. In 2014, at age fifty-eight, she
was diagnosed with young-onset
Alzheimer’s.
In this remarkable book, Mitchell
shares the heartrending story of her
cognitive decline and how she has
fought to manage it. What lay ahead
of her after the diagnosis was scary
and unknown, but she was
determined and resourceful, and she
vowed to outwit the disease for as
long as she could.
Natural care: taking care of
yourself the natural way by Wendyl
Nissen, 2022
In this time of great uncertainty,
Wendyl focuses on turning to your
garden, animals, books, loved ones,
and, importantly, looking after
yourself so that you have the means
to give to others. Wendyl writes about
how to care for others, the land, the
water, animals and yourself in ways
that are good for our communities
and our planet.
Journals/magazines
Dynamics of Human Health
Vol 10 issue 1 2023
Forward UK SCI:
Fundraising Challenge
Issue 169 Winter 2022
New Mobility
Issue 346 Jan/Feb 2023
Spinal Network News
Vol 23 no. 3 December 2022
Topics in Spinal Cord injury
Rehabilitation
Vol 28 no. 4 Fall 2022
Check out our
catalogue!
Visit the Resource
Centre catalogue
abc.mykoha.co.nz
All of the listed items are available
to loan from the Resource Centre.
We are located on the way to the
spinal gym, call in and see us!
Contact Bernadette Cassidy for
more information
bernadette.cassidy@nzspinaltrust.org.nz
or phone: 022 600 6630

SPINAL NETWORK NEWS 31
The Funeral
Published author Hamish Ramsden has made a big impact as a
regular columnist for the Spinal Network News.
I had visions of a
Monty Python scene.
—Hamish Ramsden
Although this particular family member spoke for
perhaps too long, he did give me more of an insight into
my friend’s life. Anyway, as it was an open coffin, we were
asked if we wanted, to walk (wheel) in single file around
the coffin and put a rose petal or two on our friend and
perhaps remember him in any particular way that we
wanted to.
So, I waited in line, slowly wheeling forward and managed
to shake off my rose petals on the way round the coffin,
but when I got to where I had to turn sharply to effectively
get around the head of coffin, there was not enough room
for me to get around. I was effectively stuck, slightly
between the coffin and the windowsill. Crikey I thought,
(or words to that effect). What was I to do now?
LEGEND—Hamish Ramsden knows what it’s like to have an SCI
and wants to help others.
Some time ago I went to a friend’s funeral. He
had been in a wheelchair for a long time and
had taught me a lot about attitude and
getting out and doing stuff.
Even so, he struggled towards the end for his own purpose
and meaning. It was a struggle to see him slowly decline. I
try to take some learnings from all of this; the main ones I
think I learnt were that you need to keep working on your
mental aptitude, to never take things for granted and to
try and keep finding a purpose to get up and out of bed
each day.
Anyway, so I tootled off to his funeral and there was a
reasonable gathering of other wheelies, friends and
family and current and former Burwood Spinal Unit staff.
One member of the family got up to talk and I think he
had taken inspiration from the Minister, who spoke just
before him who stated that there were no other funerals
that day, so we effectively had as much time as we wanted.
The family member took that to heart and after about 45
minutes of speaking I could see people getting more and
more restless and indeed one or two had to surreptitiously
leave the funeral as they had other engagements to go to.
To move forward meant nudging and moving the coffin
and potentially tipping it over, but now I was sufficiently
wedged I couldn’t move backwards either, without
shifting the coffin as well. I had visions of a Monty Python
scene where I knocked the coffin over, the body and rose
petals came spilling out and there was general
commotion whilst the song “Always Look on the Bright
Side of Life” burst from the speakers.
The line was slowly building up behind me as I nervously
thought what to do. I thought the best and only plan was
to nudge forward, just to see if I could get one more
chance of getting around the coffin. I moved a bit, the
coffin moved a bit, I moved a bit, the coffin a bit more, all
whilst the queue got longer and longer behind me. I took
one last breath and nudged what I thought would be the
last one that I needed, but would it get me through or
would the coffin cascade over.
Thankfully, oh so thankfully I nudged free and my Monty
Python moment did not eventuate. I know that my friend
would have been looking down from above chuckling
quietly to himself as he was wont to do, and now I could
see the funny side of it as well. Whereas 30 seconds ago I
certainly could not.
Any learnings from this? Yes indeed, firstly, always have
time for your mates as we never know what they are going
through and never tell anyone that they have unlimited
time to talk.

NEW ZEALAND SPINAL TRUST 32
Burwood Academy
Trust—Hā-i-mano
Ka mua ka muri—walking backwards into the future.
VISION—Drawing in the voices of tāngata whaikaha Māori and disabled people is at the heart of BAT research.
Years ago, the name Hā- i- mano was gifted
to Burwood Academy (BAT) by Whaea Mere
Hibbs. It speaks of the voices of many, and to
us of listening to truly hear.
This is at the heart of Burwood Academy's research
mission; drawing in the voices of tāngata whaikaha Māori
and disabled people, listening and weaving those voices
at every level of our research and shining a light on paths
to participation and flourishing in all areas of personal
and civic life.
In March, we hosted our first 2023 Research Forum
(formerly Peer Group) to connect with our community of
people with lived experience, researchers, clinicians and
leaders. We wanted to listen to their priorities for disability
research and service development and the forum itself.
This forum, Ka mua, ka muri | Walking Backwards into the
Future, started with Dr Bernadette Cassidy, NZST
Resource Centre Manager, overviewing Burwood Academy
Trust's seeding within the New Zealand Spinal Trust. She
noted that Professor Alan Clarke, who began the NZST,
—Marty Van Der Kley
Disabled people must be
included in disability system
transformation at every level.
insisted that those experiencing spinal cord injury be
drivers of their rehabilitation toward independent living;
this included access to and involvement in research that is
meaningful to them and their lives.
Since then, Burwood Academy has grown to live its own
life, independent of but very closely aligned with the
NZST. Our research focus has grown to include the wider
disability community, which shares many issues facing
people living with SCI, such as accessibility, equity,
vocational development, relationships with health
partners and navigation of health systems.

SPINAL NETWORK NEWS 33
—Dr Rachelle Martin
We heard a clear message
about continuing to build
connections.
Staying in touch with these issues so that our research is
relevant, and our research community is connected and
supported are two reasons we hold these forums—and we
wanted to hear how they might further meet the needs of
our community.
People attending the research forum spoke of valuing
opportunities such as collaboration between consumers,
people with lived experience of disability, researchers and
clinicians; understanding the impact of research and
development at every level; networking and hearing what
others are involved in; and discussion and education
around disability system transformation.
Some of the research priorities coming up for the
group included:
• The ongoing effects of Covid and its impact on
disabled people
• Treatment and outcome inequities between
different funders
• Cost-benefit implications of funding disparities
• Exploring ways to bridge contentious relationships
between those receiving healthcare and rehabilitation
support and providers
• Vocational support
• Attitudinal and culture change related to inclusion
KNOWLEGDE—BAT has woven the experiences and expertise
of people with lived experience of disability through various
research programmes from their inception.
If you would like to share your expertise and experience,
helping to shape research that matters by people who
care, Burwood Academy would love to hear from you.
Tāngata whaikaha Māori and disabled people, whānau,
clinicians, service planners, researchers, supporters and
other interested people are warmly welcome to share in
conversation about how we can work together to
positively impact disability services.
• Community accessibility
• Healthcare across the lifespan of tāngata whaikaha/
disabled people
We heard a clear message about continuing to build
connections and multiple points for the involvement of
people with lived experience of disability through
kanohi ki te kanohi conversations (face-to-face) across
the research pathway. Burwood Academy Lived
Experience Advisor, Marty Van Der Kley, noted that
disabled people must be included in disability system
transformation at every level. They are in a prime position
to speak to ‘hot topics and current disability issues’
driving relevant research.
Dr Rachelle Martin illustrated how, to date, BAT has
woven the experiences and expertise of people with lived
experience of disability through various research
programmes from their inception. She also highlighted
how disabled people, including tāngata whaikaha Māori,
are involved in creating ways that the research can
impact service delivery and health and wellbeing
outcomes.
To enrol as a lived experience advisor for our research
plans and projects, visit our website :
www.burwood.org.nz/bac-network-registration-form
Consider joining our mailing list for occasional
updates on events and activities:
www.burwood.org.nz/connect
Or follow us on Facebook and LinkedIn

NEW ZEALAND SPINAL TRUST 34
Honouring a Legend
The NZST held a picnic recently to pay tribute to Dr Angelo Anthony.
SERVICE—For more than 40 years Dr Angelo was a senior
medical specialist at the Burwood Spinal Unit.
On Saturday 4 March the New Zealand
Spinal Trust (NZST) celebrated a very
special afternoon reminiscing and
acknowledging the remarkable life and
work of Dr Angelo Anthony.
Angelo sadly died in November 2021 and due to COVID-
19 restrictions, numbers were limited for his funeral,
but a promise was made by the NZST to hold a memorial
service where former and current patients, staff and
Angelo’s family could attend and share memories of a
very special man, father, grandfather, friend and doctor.
For more than 40 years Angelo was a senior medical
specialist at the Burwood Spinal Unit involved in the
treatment and rehabilitation of people with spinal cord
injuries. His achievements were many; he developed new
treatments and improved preventative measures
of spinal injuries.
He was also involved in the changing of scrum laws in
rugby to try and lessen injuries. He established a specialist
urology team at the Burwood Spinal Unit, where he
modified many of the processes used to treat urinary
problems in his patients.
He also pioneered the effective home treatment of spinal
patients with pressure sores, to reduce the number of
hospital admissions, and his fertility work made it
possible for patients with spinal cord injuries to
become parents.
Angelo’s dedication to his patients was legendary,
he treated them like family and many patients recall
Angelo’s dedication
to his patients
was legendary.
waking in the small hours to find Angelo by their bedside
checking on their condition. Angelo spent so much time
at the Burwood Spinal Unit that his family joked that
Burwood was his first home.
The memorial commenced with a Powhiri by Willie
Pitana and his whānau with Hans Wouters as MC.
A host of great tributes were made by Angelo’s family,
patients and staff: Nelunka Ormandy (Angelo’s daughter),
Professor Ted Arnold, Mr Allan Bean (who worked
alongside Angelo), Nathan Hood (Director of Nursing),
Snow Reardon (former patient), Andrew Hall (NZST) and
Farid Ahmed (former patient). Farid spoke of Angelo’s
kind spirit and read out a Bengali poem describing love,
compassion and what a rare human being he was.
Angelo did so much for people with SCI and he will
always be remembered.
A few days after the memorial Nelunka sent a message to
Hans thanking everyone for the effort put into organising
the memorial for her dad. “It was a wonderful, relaxed
afternoon. I really enjoyed hearing how Dad's work has
impacted so many.”
Kua hinga te tōtara o Te Waonui a Tāne
A great tōtara in the great forest of Tāne has fallen.

SPINAL NETWORK NEWS 35
Thank you to our
Funders & Sponsors
The New Zealand Spinal Trust appreciates the generous support of the following
funders. Without their kind support, the Trust would not be able to deliver the
variety of services to assist clients to live independent lives right now.
Permobil is a global leader with over 50 years
experience in providing advanced medical
technology and state-of-the-art healthcare
solutions. Today, those solutions include the
sale and rental of power wheel chairs,
manual wheelchairs, power assist and
seating & positioning products.
Access Community Health has been at the
forefront of keeping people healthy and safe
in their homes since 1927. Today our
nationwide team of skilled nurses and 3,000
support workers make over three million
visits per year, ensuring people can remain
active and independent in their own homes
and community.
Able Axcess are the leading suppliers of
aluminium mobility ramps for
residential and commercial disability
access. We also manufacture rubber
threshold ramps and level shower
inserts, at our factory in Feilding.
Avonhead
Rotary
Rehabilitation
Welfare Trust
The Elizabeth Ball
Charitable Trust
Burwood
Volunteers Trust
Deluxe Box
Riccarton Rotary
Charitable Trust
Crusaders
Canterbury Masonic
Charitable Trust
Cube Design
The Palms Shopping Centre
A F W and J M Jones
Foundation
Fresh Choice Parklands
Rotary Club
of Christchurch
Hyman Marks
Charitable Trust
JBS Dudding Trust
Freedom Mobility
Are you a subscriber?
It’s easy to subscribe to the NZST and it only costs $30 a year. Your subscription
helps with the printing of the Spinal Network News magazine and helps us
support the positive futures of people with spinal cord impairment.
Go to our website and click
on the red ‘Donate’ button
www.nzst.org.nz

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