SNN_August 2022 Issue_web low res

August 2022
Volume 25 / Issue 2
Te Tarahiti Manaaki Tuanui
SNNSpinal Network News
JOE EVANS TALKS
ABOUT OVERCOMING
CHRONIC PAIN
TREVOR “GRIPPER”
HARRISON GETS BACK
ON HIS HORSE
WE PAY TRIBUTE TO
A NZST LEGEND—
DR BERNADETTE CASSIDY
“When you speak
with Jamie, you
see the person,
not the chair”
Jamie Astwood inspires with
her incredible attitude

NEW ZEALAND SPINAL TRUST 2
Contents
3
Leaving a Legacy
Editorial
24
Overcoming Chronic Pain
Joe Evans
5
Supporting Positive Futures
Hans Wouters—CEO NZ Spinal Trust
27
A Life of Making a Difference
Bob Symon
7
Helping Others with an SCI
Henry Matthews
29
Telling it Like it is
Teina Boyd on the shortage of carers
10
A Winning Attitude
The remarkable story of Jamie Astwood
31
Road Trip
Hamish Ramsden’s column
14
What Can I Do?
Cyril Murray and his knife sharpening service
32
Resource Centre
New additions
16
Giddy Up
Trevor “Gripper” Harrison is back on a horse
33
Pain and SCI
Burwood Academy Trust Update
19
Back on Top of the Mountain
Luke Henley
35
Funders and Sponsors
21
Meet our Team
Meika Reid shares her passion to help people
EDITORIAL TEAM
Peter Thornton (Editor)
CONTRIBUTING WRITERS
Peter Thornton
Dr Bernadette Cassidy
Teina Boyd
Hamish Ramsden
Su Marshall
Hans Wouters
Bernadette Cassidy
Hans Wouters
THANKS TO THE FOLLOWING
FOR IMAGES IN THIS MAGAZINE
Henry Matthews
Jamie Astwood
CatWalk
Cyril Murray
Bob Symon
Meika Reid
Joe Evans
Teina Boyd
Hamish Ramsden
Luke Henley
Abigail Dougherty/ Stuff
Su Marshall
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: Jamie Astwood was
a natural choice to be a CatWalk
ambassador. Photo credit CatWalk.
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
Leaving a Legacy
Peter Thornton
Editorial
GONE TOO SOON: My mother-in-law Trish Sutherland will leave a big hole in our family.
I am sitting in the front row of my
mother-in-law’s funeral and I can feel the
tears welling up in my eyes. It has been a
rough six months for our family which has
culminated in this moment.
In November last year my wife’s mum jumped out of bed
only to fall crashing down on to the floor. Inexplicably,
and without warning, Trish lost the use of her legs
overnight. She was later diagnosed with a rare and
aggressive form of brain tumour which caused her
paralysis. She was given 10 – 12 months to live but in the
middle of May at the age of 64 she died peacefully at her
home in Auckland.
It was a devastating and surreal moment for our family.
One we are still coming to terms with and trying to
understand. It was such a contrast to a year ago.
Last August Trish took two weeks of annual leave to come
down to Wellington to help when my son, Toby was born.
She looked after our girls—walking Charlie (6) to school
every day and also dropping off Georgie (4) to
kindergarten and sitting and doing puzzles with her. She
was an incredible help and there was nowhere else she’d
rather be. It was a really special time for our family.
Not even 12 months on, we watched her health deteriorate
rapidly and now she has gone. She will leave a huge hole
in our family. One of my most treasured memories of
Trish came a few years ago when she ran her first
Auckland Half Marathon. It was a huge challenge for her
and one she took on head on. Seeing her running down
the finish line at Victoria Park with so much pride on her
face, that was a great moment.
There are three things that have been on my mind since
Trish’s funeral: (1) Perspective, (2) Community and (3)
Moving forward.
(1) Perspective:
—Peter Thornton
Sustaining an SCI has many
parallels to losing a loved
one. There is a time of grief,
loss and adjustment.
Attending a funeral of a loved one has given me real
perspective. The rapid rate of Trish’s decline was sobering
for me and was another reminder that we really have to
make the most of every day. Our time is so precious and
life is short.
Listening to the eulogies about her life and the impact she
had on people was touching. She was generous, determined
and selfless. That was her legacy. It makes you think, when
my time is said and done, how will I be remembered? How
do I want to be remembered? These are good things to
think about every day as we apply ourselves to our work,
family and friendships. If there is a misalignment with
how we’d like to be remembered and our current
interactions with those around us, then we need to look at
that and make adjustments. What do you think are the
barriers to you being the person you want to be?

NEW ZEALAND SPINAL TRUST 4
TROUBLE: My three kids loved their grandma.
One of the natural and most common feelings at times
like this is guilt. Did I do enough? Did I make the most of
the time I had to connect with her? Yes and no. We did put
in a huge effort over the last six months of Trish’s life but I
feel I could have done more.
There will be a time when I am in Katie’s position and I
am saying goodbye to one of my parents. It is one of my
biggest fears. I want to make sure there is no doubt – that I
made the most of every opportunity to connect and spend
time with the most important people in my life.
(2) Community:
It is an amazing feeling to be part of a community of people
who genuinely care for you. The day we arrived back in
Wellington we were overwhelmed by all the love and
support. The doorbell rang consistently that afternoon
with meals, beer, wine, flowers and gifts from all parts of
the neighbourhood. They kept coming all week. The meals
were amazing. The generosity was off the charts.
Katie and I looked at each other that night and realised
that we were part of something special. Isn’t that how life
should be? A group of people who look out for one another
and make sure they are doing OK. Life is hard and for
many, it is a lonely old road.
It was a devastating
and surreal moment
for our family.
—Peter Thornton
We need to look out for one another. Every time
something like this happens, it is an experience in paying
it forward. We have been supported and now we will do
everything in our power to support our community in
every opportunity going forward.
The SCI community are great at supporting one another.
Sustaining an SCI has many parallels to losing a loved
one. There is a time of grief, loss and adjustment. Peer
support plays a leading role in helping the SCI person and
their whānau get through this challenging time. We can
all do more. Reach out to that person you have always said
‘we should catch up for a beer or a cuppa’ but never done
it. Make it happen.
(3) Moving forward
Life goes on. There have been many stages of grief for
Katie over the past few months and that will continue as
milestones like her mother’s birthday and Christmas
come along. Things won’t be the same again. It will be a
new normal and we have to adjust. Our family has
committed to keeping her memory alive. We will make
sure Trish’s phrases and values play a role in our kids’
lives. She will not be forgotten.
Life is all about special moments. The last six months have
been difficult and challenging for me and my family. It will
take time to heal and adjust to the loss of Trish but by being
there for each other and being kind, we will get through.
We need to move forward together. We are putting things
in our calendar that we are genuinely excited about.
Again, it is similar to adjusting to life with an SCI. It is a
new beginning. It is starting again. It is accepting that life
has changed and we need to make the most of it. This year
will always be part of our story but we need to start
writing the next chapter together.

SPINAL NETWORK NEWS 5
Supporting
Positive Futures
Hans Wouters
CEO’s Column
tasked by Prof Clarke with filling a library. She was given the
responsibility to develop a resource that would impact
individuals newly affected by spinal cord impairment, their
whānau, clinicians and pretty much anyone who came
through the doors or contacted the NZST.
To have been with us for 20 years is such a huge milestone
and is worthy of not only celebration but also our deepest
gratitude. Our staff and trustees gathered in Bernadette’s
honour and said ‘thank you’. We thanked her for all she
has done to contribute to the success of NZ Spinal Trust
and the many thousands of people that her diligent skill
and care has benefited.
LEGEND: Dr Bernadette Cassidy is one of the all-time greats of the NZST.
Last night we had a surprise party!
A bit of background info for you first. The median job
tenure for women in New Zealand is three and a half years.
With that statistic in mind, how does any woman raise
four fabulous kids living awesome lives (some of whom
are now raising their own fabulous kids) AND reach 20
years’ continuous service in a very demanding role?
It is said that great organisations are built on the
shoulders of giants. Although our founder Professor Alan
Clarke has passed away (2007) there is still a giant in our
midst and long may she remain.
Dr Bernadette Cassidy has just celebrated 20 years of
continuous service for the NZ Spinal Trust (NZST), and
more importantly, serving the thousands of individuals
and their whānau who have transitioned into "life after
bugger" as Prof used to call it.
On Monday July 8, 2002 Bernadette (not yet having achieved
her PhD) stood in the empty Allan Bean Centre and was
She showed immense
grit and determination to
overcome that loss.
—Hans Wouters
I have many things in my life I am grateful for and less
than a handful of things I regret. One thing I regret was
not having the pleasure of meeting Prof Clarke, however
one thing I am grateful for was working in the Allan Bean
Centre facility.
What an amazing space that was. The Allan Bean Centre
(ABC) had a very special feeling and much of that was due to
the library that Bernadette created and championed. It was
spacious. It was glorious—with its high raked ceiling taking
your eye to the massive picture window wall which framed
the most magnificent elm tree, still standing today.
I mention these things because losing the ABC
post-earthquakes cut very deep for Bernadette. I have no
doubt on more than one occasion since we moved out
(eight years ago last month) she may well have
contemplated her future at NZST. It would be fair to say
the impact of losing the ABC was most affecting and
profound for Bernadette above all our other services. Its
loss was huge for her.
Bernadette’s traverse through this life-changing event is
paralleled daily by new spinal cord impairment patients
whose world has been turned upside down by an
unexpected catastrophe.
She showed immense grit and determination to overcome
that loss and forge a new path for our resources and how
we deliver them. With the help of her colleagues
Bernadette has overcome, and given the NZST Resources
Centre a bright future. Who knows what that future may
hold in regard to where we base our services from? One
thing is for certain she is far from finished and we have
collective hope for our future.
So, we had a surprise party and it was a great privilege to
honour Bernadette in front of her peers and just as
importantly in front of her family who added to the
surprise value by attending as guests of honour.
Thank you very much Bernadette, we look forward to our
next party with you. And may it be many years from
now—when you retire!

NEW ZEALAND SPINAL TRUST
Fadiel Italiana
6
Driving Hand Controls.
For those who
totalability.com.au

SPINAL NETWORK NEWS 7
Putting His Hand Up to Help
We profile Henry Matthews, Community Peer Support Worker
—Henry Matthews
I can remember the day of
my accident vividly.
number of new staff working in the regions. They are
doing a very important job of connecting with and
supporting people with an SCI.
Henry is a great example. He was nominated by Kim
Nepata, the Whānau Support Coordinator for the NZ
Spinal Trust.
“I knew that I have knowledge that could help others,” he
says. “I enjoy meeting up with others. I like to give back if
I can help others.
Henry says his role keeps him busy and proactive. He
enjoys meeting people.
“I know first-hand what newly injured people are going
through as I've been there. Everyone’s recovery is
different, and it's all about treating everyone equally and
with respect.”
Henry has plenty of invaluable life experience to pass on.
He became a tetraplegic at the age of 18. He was injured
after diving into shallow water at Matauri Bay, Northland.
NEVER GIVE UP: Henry says living with an SCI was a huge adjustment.
Henry Matthews wants to show that
anything is possible for people living with a
spinal cord impairment (SCI).
The 50-year-old Community Peer Support Worker, who is
originally from Auckland, has recently joined the
nationwide Peer and Whānau Support programme in
Palmerston North.
The $1.3 million investment from ACC into Peer and
Whānau Support has been labelled “a game changer” for
the SCI community.
The Peer and Whānau programme has been extended
across 18 regions from the far north (Whangārei) to the
deep south (Invercargill).
Most regions across Aotearoa have at least one Peer Support
worker. The investment supports a coordinated network
of 20 -30 fully-trained community peer support staff.
The expansion of the programme has resulted in a
Henry says it took him two years to get used to his new
life in a wheelchair.
“It was so hard, I didn't really want to go outdoors, I just
wanted to stay inside,” he says.
“The first couple of years was denial. Why me? I had a
good job, and I was just on holidays… I never thought it
would happen to me.”
He says a turning point in his rehabilitation was learning
how to get active again.
“If it wasn't for a couple of guys and ladies who would
come in and talk to you, and say ‘life is not over unless
you want it to be’… if it wasn't for them, I don't think I'd be
here today.”
Henry is a passionate advocate for taking risks and giving
things a go. He encourages people who have limited
mobility to get out of their comfort zone and try
something new.
“Go out and get proactive. There’s plenty of time to sit in
front of the TV.
“A lot of people in wheelchairs, you know, they can do
anything, if you put your mind to it."

NEW ZEALAND SPINAL TRUST 8
Henry found out about wheelchair rugby through a
person he met while in the Spinal Unit recovering from
his injury.
“He said: 'Come and have a go'… I went and had a look,
and looked at him and said: 'you're crazy'.
“The things they were doing were unbelievable. You
know, these guys were smashing each other, falling out of
chairs and these guys were crazy.
—Henry Matthews
I tell them to expect to grieve
as they learn their new life.
“I was going like, ‘you’ve broken your necks mate, why
would you go and smash yourself around like that?’”
But Henry soon fell in love with the physical intensity of
the sport. He was hooked.
He got involved in the Wheel Blacks development squad
in the mid-1990s and has since gone on to play and coach
in various parts of New Zealand.
He tries to pass on that same advice to others he meets in
his Peer and Whānau Support role.
Henry’s only background in the disability sector was his
involvement in wheelchair rugby.
“I was nominated for this position as I’m known for liking
to chat with others and helping where I can,” he says with
a smile.
“I’ve been in a chair 32 years so have a lot of knowledge to
pass on.”
He admits leaving the Spinal Unit for the outside world is
a challenging step.
“Life will be different when you get home, the Spinal Unit
is very accessible and supported but, back home in the
community, things can be very different,” he says.
“I also tell them to expect to grieve as you learn your
new life.”
Henry is speaking from experience. Even now, 32 years
on, he can vividly remember the day of his accident.
“It was 29 December, 1990. I remember being on the
beach, in lots of pain waiting for an ambulance as the
helicopter was busy. I couldn't tolerate light, and I didn't
want my family to see me like this.”
He says it is great to see how New Zealand has changed
with regards to support for those with a spinal cord
impairment.
And it is a huge privilege to be part of helping people with
an SCI.
“Peer Support is important so the newly injured know there
is support out there and that they are not alone,” he says.
“It's good to know ACC are behind the Peer Support
programme and are looking out for everyone whether
newly injured or been in a chair along time.”
He says it’s important whatever stage of your journey to
be mindful of others.
“My advice is to treat others with respect, we need them
more now and they are just doing their jobs. Treat your
family with respect, they are grieving too.”
HAPPY TO HELP: Henry is a natural fit
to be a successful Peer Support worker.
“I wish I had listened more”
What advice would you give your 18-year-old self
when you first arrived in the Spinal Unit, scared and
unsure about your situation?
When the doctors told me I would never walk again it
affected me emotionally and mentally. I was sad,
frustrated, hurt and used to get mad easily.
I didn't know what was going to happen when I was
admitted to the Ōtara Spinal Unit. Looking back, I wish
that I had listened more to the people around me.
But I was given a second chance at life, I met Sue at Ōtara
Spinal Unit in 1991, and we married on November 16, 1997.
We have two daughters Zhané (24) and Anahera (13).
If it wasn’t for her, I don’t know where I’d be. Probably six
feet under, I don’t know. We’ve been married for 25 years
now, and I've been in a chair for almost 32 years. So yeah,
a lot of love there.
I started playing wheelchair rugby in 1994 when I was
living in Auckland, it was great for an outlet and to be
socially involved with a group of people who had the same
physical issues as me.
It’s where I've learnt a lot about life in a chair from others
who had the same life experiences.
The NZ Spinal Trust’s fundraising efforts will ensure that
Peer Support is also available to non-ACC clients. All
support provided is free of charge.

SPINAL NETWORK NEWS 9
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NEW ZEALAND SPINAL TRUST 10
The girl with the
constant smile
Jamie Astwood bounces back from a “freak accident”
to achieve remarkable feats
—Jamie Astwood
My situation is not the
greatest, but I’m super positive
and grateful for living life.
“I want to show people that, yes my situation is not the
greatest, but I’m super positive and grateful for living life.”
Jamie has a maturity, resilience and confidence that
belies her 20 years of age.
It’s that attitude that has seen her selected as a CatWalk
Ambassador.
The CatWalk Spinal Cord Injury (SCI) Research Trust was
founded in 2005 by Catriona Williams.
Catriona was one of New Zealand’s leading international
equestrian riders. Following a riding accident in 2002, she
is now C6/C7 tetraplegic and uses a wheelchair.
Her dream was a cure for paralysis and so CatWalk was born.
The Trust believes in supporting research in the “very
realistic bid for a cure for spinal cord injuries”.
Jamie was a natural fit to be involved. Her positive
outlook on life is infectious.
LOVELY PERSON: Jamie always wants to look on the bright side of life.
Jamie Astwood was lying flat on her back in
the Wilson Centre in Auckland, a
rehabilitation centre for children. She knew
she had a choice to make.
She was 11 years old and her life had changed in a moment.
“I thought to myself ‘no one wants to be around someone
who is negative and mopey all the time’,” she says.
“I decided to focus on making the most of my situation. I
have a smile on my face constantly. People would rather
be around someone who is positive, smiling and looking
for the good in every situation. You never know what
other people are going through.
“My Mum and Dad have always supported me no matter
what. They let me know that yes, it is ok to have sad days.
It’s ok to feel like you are below the weather. I have those
days. I always come back to I’d rather be happy for myself
and for the people around me.”
Jamie is a remarkable young woman with a bright future.
“I can’t feel my legs”
She will never forget the date 19 January 2013.
Her family were traveling in Northland in the summer
holidays. They visited Ahipara and got the boogie boards
out to do some dune surfing.
“I was a daredevil child growing up and I was having the
time of my life,” she says. “I was like ‘Absolutely I am
doing this’. I went all the way to the top.”
On her last run, Jamie hit a patch of grass at the bottom of
the dunes. She was thrown off her board.

SPINAL NETWORK NEWS 11
THE DAY BEFORE: Jamie with her family in Northland on 18 January 2013
“I’ve had plenty of ‘what if’ moments, but it doesn’t do me
any good. I have to accept it.”
There is not a lot that Jamie remembers from that fateful day.
“I remember right before I was about to hit the patch of
grass, I thought ‘Should I roll off this boogie board or risk
it’. Everything flashed through my mind. I decided to
stay on…”
Jamie hit the ground hard and at speed. She did two big
somersaults and landed in a heap.
“I had a crowd of people looking down on me. I was saying
‘I can’t feel my legs. I can’t feel my legs’…. I was pretty
scared about what that meant.”
She also had acute shoulder pain, which was referred pain
from splitting her liver.
Jamie had damaged her spinal cord in several places. She
was paralysed from the waist down—classified as a
T4 Paraplegic.
Starting life again
Jamie was flown by helicopter to Auckland’s Starship
Hospital where she spent three weeks. She celebrated her
11th birthday there. She also had surgery where two large
rods were inserted into her spine.
She was later admitted to the Wilson’s Centre for two
months.
“It was a pretty difficult time,” she says. “I had to start
again. I had to learn how to live from a wheelchair. It was
a really challenging time for me and my family.”
Jamie was only 11. She had her whole life ahead of her, but
everything was tipped upside down.
She believes her young age was a blessing in disguise.
“I was able to adapt pretty easily because I was so young.
It’s not like I had lived a full life and grown up and then
—Jamie Astwood
I was able to adapt pretty
easily because I was so young.
this had happened to me. Whenever I was asked to do
something new or take on a new challenge, I would try my
hardest to do it and give it my all.”
She is proud of the fact her stay of two months at the
Wilson’s Centre was one of the quickest for a young
person with a spinal cord impairment.
“I think that was because I tried everything that they told
me to and I was always keen to push my boundaries.”
The support of her family was her pillar throughout it all.
Her mum was with her every day of her rehabilitation and
was her rock.
“Mum was amazing. I know that time would have been
very difficult on her and Dad, but they never showed that.
I have no idea what it was like for them to watch me go
through that, but I am so grateful that they were brave
and strong for me.”
Jamie had to be brave herself.
After her stay at the Wilson’s Centre, she re-entered the
real world with a spinal cord impairment.
“It was freaky going home,” she says. “We’d been in our
own little bubble. There were nurses constantly checking
on us. You could call and they’d be there in a minute.
“When we got home it was hard to get used to. I came back
to my old house in my wheelchair, and it was a big
adjustment. It was weird to see my house differently—it
wasn’t accessible at all.”

NEW ZEALAND SPINAL TRUST 12
“Everyone was so curious”
Starting at Fairfield Intermediate in Hamilton was the
beginning of a new chapter. Jamie was the only person at
her school in a wheelchair.
“Everyone was so curious,” she says with a laugh. “They
asked so many questions about what happened and what
it was like. I had people coming up to me every morning
tea and lunch. I became known as ‘Jamie, the girl in the
wheelchair’.”
She moved onto Waikato Diocesan School (Dio) for Girls.
She found being in a wheelchair made her shyer and
more nervous.
“I made a decision to dive in and get involved like
everyone else. Dio were really good at making sure
everything was accessible. I had a wonderful group of
friends who were tight knit and made a big difference. I
didn’t look back.”
Finding a new passion
Jamie’s friends only ever knew her as being in a
wheelchair.
“I didn’t get treated any differently by them. It was nice to
be just like everyone else.”
At Dio, she excelled in art subjects and her new passion
was born.
“I love being creative,” she says. “As girly as this sounds, I
love make up and fashion. I love doing my friends’ make
up for balls.
“I love connecting with people in that way. I love it when I
do someone’s make up and they feel good. Seeing that
smile on their face is really special.”
Jamie’s positivity is
infectious—something
we can all learn from.
—Meg Speirs, CatWalk Trust
After completing High School, Jamie began working with
the NZ Police in Hamilton. She is an administrator and
responsible for reviewing firearms applications.
“It’s our team’s role to keep our community safe. We make
sure the people who get firearms are fit and proper,” she
says proudly. “That is our goal. I have a great team. I am
still working out what I want to do long term, but for now,
I love my role.”
She takes great pride in being an ambassador for the
CatWalk Trust.
“I was a bit surprised to be asked but it’s a real honour,”
she says. “It’s great to be able to inspire others through
being an ambassador.”
A few years ago, Jamie featured on TVNZ’s Seven Sharp
when she told her story in CatWalk’s ‘One in a Million’
campaign. Every year her school picked a charity for
fundraisers and CatWalk was selected as the recipient in
Year 12.
Meg Speirs is the General Manager at The CatWalk Trust.
She says Jamie was a natural fit in what they look for in an
ambassador.
ALL STRAPPED UP: Ready to leave Whangarei Hospital to be flown to Starship Hospital.

SPINAL NETWORK NEWS 13
“Jamie is a remarkable young lady,” says Meg. “Her
positivity is infectious—something we can all learn from.
When you speak with her, you see the person, not the chair.”
Jamie loves sharing her story.
“If I can make a difference to someone else’s life then
that’s an opportunity I always look to take.”
What advice would you offer to other young people
who have sustained an SCI?
It gets easier. I know you’ll hear that all the time, but it
really does. Over time you will get more confident and
independent.
Take one day at a time. Don’t think too far into the
future. You will get totally overwhelmed. Wake up every
day and write down the things you need to do. Don’t
worry about next week, next month, or next year. Just
focus on what you need to do right now and then go
from there. You will look back and be surprised at how
far you have come.
ROYALS: Jamie hanging out with Zara Tindall at the 10 year
CatWalk birthday party. It was three years after her accident.

NEW ZEALAND SPINAL TRUST 14
What Can I Do?
Our new column which highlights ways people can help
HEART OF GOLD: Cyril Murray is all about providing a good service and helping others.
What Cyril Did
People choose to support NZ Spinal Trust (NZST) for all
sorts of reasons—they may have gone through the Spinal
Unit as a patient or whānau member; they may work with
spinal patients; they may have a friend of a friend of a
friend in a wheelchair. Very rarely though does it involve
an appreciation of a sharp knife …
NZST’s CEO, Hans Wouters, likes a sharp knife for in the
kitchen and he found a complementary spirit in Cyril
Murray, who enjoys the craft and satisfaction of
sharpening blades. And given that they both also enjoy a
good conversation, it was inevitable that the subject of
“What do you do?” would come up.
Cyril started his working life as a butcher—a trade where
a sharp knife was vital to being able to do the job well, so
he learned how to take care of his blades. Although he left
the trade after a few years, he kept the blade skills he’d
—Cyril Murray
I’d like this article to
encourage other businesses
to do the same.
learned and used them to help out whānau and friends
when they needed knives sharpened. In 1996 he set up
‘Sharpen Up’ and this became a full-time job. It dropped
back to a ‘side hustle’ when he was offered a position
selling Kubota machinery.
When Cyril retired in 2014, ‘Sharpen Up’ became his
full-time interest, sharpening blades, dress making
shears and garden tools along with selling quality tools

SPINAL NETWORK NEWS 15
such as Silky saws, Robuso dress making scissors and
shears full time. … He started saying ‘yes’ to any blade
brought in (and then would learn the skills needed for
that particular tool). Now if it has a sharp edge, Cyril can
keep it sharp.
Enter Hans and his kitchen knife and “what do you do?”
… Cyril was genuinely interested in what NZST does and
the community they support. Hans gave him a copy of
Spinal Network News from his car.
On Hans’ second visit to ‘Sharpen Up’ Cyril asked “Can I
raise some money for you?” He decided to spread the word
about NZST amongst his customers—in amongst the
banter there’s an ask—and he collects donations, even
though he has no personal connection to SCI. Cyril
reckons 35–40 percent of his customers donate a little—
usually it’s the change they were due. Then he and his
wife Sandie personally match their customers’ donations.
They had a goal to donate $1,000 in their first 12 months
… and they’ve blown that out of the water.
Although Covid has slowed things down a bit, they’re
expecting business (and donations) to build again—and
they’re looking forward to it. When asked why they
decided to do this, Cyril and Sandie said they are
comfortably set up and they like to help people—
especially when they can see they’re helping themselves.
“I’d like this article to encourage other businesses to do
the same”—Cyril’s always looking for a way to nudge
others to give too.
www.fitch.nz
SKILLED: Cyril is handy with knives.
DONATION BOX: Cyril's way of helping the NZST.

NEW ZEALAND SPINAL TRUST 16
Best Mates
Tetraplegic Trevor “Gripper” Harrison is back on his horse
HARD CASE: There is only one “Gripper”. And look how happy he is, back on his horse.
This is a story of how two “wrongs” have
made a heart-warming “right”.
Trevor ‘Gripper’ Harrison broke his neck in a car
accident in 2002. He was told he had a five percent chance
of walking again—and that would most likely be on
crutches. “I was pretty much munted.” Being a horse
racing man (he started his apprenticeship at 14 years old,
was a successful jockey and then respected race starter)
he knew those odds weren’t good … but when you beat
those odds the pay-off is huge. Gripper’s now a walking
tetraplegic—he has a limp due to some paralysis on his
right side, but no crutches.
In the 20 years since his accident Gripper’s deep love of
horses has never wavered, even though he believed riding
was not in his future. “I like to set myself goals and
achieve them. But riding a horse again? It was never on
my list—I just knew I’d never get on a horse again.” So he
volunteers for the NZ Horse Ambulance Trust covering
the Waikato/Bay of Plenty area and works in closely with
SPCA. It was in this capacity he came across Boy.
In January this year Gripper was tasked with collecting
Boy from a property and transporting him to an SPCA
foster property. Boy had been sorely neglected—it was
heart-breaking. Everyone thought Boy was probably too
far gone and would need to be euthanised, but even as
Gripper helped hold Boy for x-rays, he felt a connection.

SPINAL NETWORK NEWS 17
—Trevor Harrison
I burst out crying—I
couldn’t believe I was on a
horse again!
He says he “fell in love with him” and they’ve become
good buddies—“I’ve helped him and he’s helped me”.
With love and care Boy is now fully recovered.
Boy is the reason Gripper’s been able to ride again for the
first time since his accident. The video taken on that April
day Gripper got back in the saddle showed him with a grin
wider than the ocean. “I burst out crying—I couldn’t
believe I was on a horse again!” He was supported by his
good mate Scotty—who’s now built a ramp to assist
Gripper getting on and off Boy, as his right side weakness
means he has trouble swinging his leg over. Boy is gentle,
patient and above all, calm—he doesn’t startle … Gripper
reckons a bomb could go off next to him and he’d placidly
stand by until asked to move on. That’s a quality not often
found in a race horse, nor an animal that’s survived abuse
and neglect. But Gripper says he feels like Boy is looking
after him—when he has to go over an obstacle, he doesn’t
stretch out—he adjusts his stride and then looks back to
make sure Gripper’s still on.
HAPPY PLACE: There is nowhere else “Gripper” would rather be.
Gripper says he’s bound to fall off one day (he does wear
all the safety gear though—no point taking silly risks), but
it won’t be Boy’s fault.
The relationship is a true love match. Gripper couldn’t let
Boy go, so formally adopted him from the SPCA. A very
good friend, Dianne, has let Gripper keep Boy on her land
and the people of Matamata have taken Boy to their
hearts – helping out with his care and donating goods,
feed, etc. Boy is happy to let anyone ride him—from
Gripper’s granddaughters to nervous pensioners;
accomplished riders to raw beginners. And every single
one of them falls in love with Boy’s gentle nature.
Gripper says he’s never been happier. “Finding Boy is like
winning Lotto. In fact, I’d rather have Boy than win Lotto.
He’s my best mate.”
If Gripper had never had his car accident, and if Boy had
been well treated, these two soul mates would never have
found each other. And if that’s not a story of two “wrongs”
making a “right” I don’t know what is.
WHAT A HORSE: Boy when Gripper first met him.
Gripper has organised many, many successful fundraising
events for the NZ Spinal Trust and in recognition of his
dedication and practical support, he was made a Patron of
the Trust in 2015. We always love seeing any of our SCI
community getting out there and living life to the fullest,
but it’s particularly lovely to see this generous man back in
his happy place.

NEW ZEALAND SPINAL TRUST 18
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SPINAL NETWORK NEWS 19
An Almighty Comeback
Auckland man Luke Henley is back on his snowboard
after breaking his back
HAPPY MAN: Luke is back doing what he loves. Photo credit: Abigail Dougherty
Luke Henley is sitting in the snow atop of
Mount Earnslaw in Queenstown and he feels
like crying.
The 40-year-old from Auckland’s North Shore is back on
his snowboard for the first time in four years after he
broke his back in a snowboard crash in Norway in 2017.
To mark the occasion, Luke and a few of his good mates
signed up for a heli-skiing trip—it was an experience he’ll
never forget.
“It was amazing,” he says. “In those times when I was so
down and struggling, I never imagined that I’d be back
doing what I love doing ever again. I thought that was it.”
Luke was nervous about getting back on the board after
the hard times he has endured. He explained to the guide
that he had recovered from back surgery and he took it
slowly to regain his confidence on his board.
It’s unreal. I kept saying
‘I can’t believe I’m
actually doing this’.
—Luke Henley
He says having the freedom to carve down the mountain
in fresh powder snow was incredible.
“It’s unreal. I kept saying ‘I can’t believe I’m actually
doing this’. It was one of the best moments I’ve ever had in
my life.”
It was a fitting moment for Luke who has been to some
dark places since his injury.

NEW ZEALAND SPINAL TRUST 20
MAJOR SURGERY: Luke underwent a significant operation to fix his spine.
On 16 February 2017 Luke and his older brother Andy
travelled to Norway to meet up with their brother Dave
who was living in Sweden at the time.
They were fizzing at the prospect of a day’s snowboarding
on the Hemsedal mountain in the Scandinavian Alps.
Prior to 2017, Luke had been living in Indonesia for five
years, working and surfing.
“I hadn’t been on the snowboard for about five years, so I
was just getting back into it and slowly building into
doing small jumps and getting my confidence back,” he
remembers.
As the day went on Luke began to push his limits.
“I decided to hit the big jumps like I used to do when I was
a bit younger, thinking I was still a 20-year old and had
nothing to fear,” he says with a laugh.
Luke caught a little bump on the ramp which sent him
flying about 20 metres into the air before landing on his
tailbone.
“The pain was unbearable. I was in a state of shock and I
was just lying there, I couldn’t move.”
Despite being in agony, Luke managed to get down the
mountain to find some strong pain relief before he
travelled back to New Zealand.
Luke learned how to walk again and had endless hours of
physiotherapy to help rebuild his body.
“It took me a long time to get back to walking again and to
living a normal life—that had a huge mental toll on me.”
Luke says ACC played a leading role in his recovery.
“The whole support system I had from ACC was
outstanding. I wouldn’t have got through that period
without their support,” he says.
The day after his heli-skiing experience Luke is on The
Remarkables mountains in Queenstown and he sees
plenty of carnage.
“Throughout the day there were at least four people
getting stretchered down off the mountain, blood on the
snow and people looked in a bad way,” he says.
“Injuries happen so easily on the mountain and you need
to be careful.”
Luke’s advice to anyone heading to the mountains is to ski
or board within your limits.
“Try not to push your limits too much. Don’t get too
carried away. The cost of a major injury is huge. I know
from my own experience it is much better to prevent the
injury happening in the first place.”
The worst was yet to come.
Luke battled with back pain for about six months, so he
went to see a specialist. X-rays confirmed he had broken
his back and needed urgent attention.
He had his first surgery in August 2018 where the surgeon
cleaned up the scar tissue in his spine to see how his back
would respond—but unfortunately the surgery didn’t work.
“My back just got worse and worse to the point where I
was struggling to walk,” he says.
“About three weeks before I had my surgery. I couldn’t get
out of bed and I was in total agony.”
The injury had a big impact on his home life.
He had his second surgery, in August 2019, where the
surgeon fused his spine. A long journey of nearly two
years of rehabilitation followed.
ALL WORTH IT: Luke says the many months of rehabilitation
were all worth it when he finally got back on his board.

SPINAL NETWORK NEWS 21
Meet Our Team: Meika Reid
We learn more about our Community Support Coordinator’s
passion to help others
GOOD SORT: Meika Reid is a popular member of the NZST Team.
Meika Reid has worked for the NZ Spinal
Trust for nearly 15 years as a Vocational
Rehabilitation Consultant. Part of that role
involved supporting and advising clients
about life with an SCI. As a woman with an
SCI, she brings a unique perspective.
So, it was a natural progression when she joined the Peer
Support Team. With the new Peer Support programme
supported by ACC, Meika became one of the Community
Support Coordinators. She tells the SNN how this came
about and how she loves working for the NZ Spinal Trust.
You are now part of the Peer Support team, what
motivated you to get into that team and this line
of work?
I’ve been lucky to have worked for the Spinal Trust for
nearly 15 years as part of the Vocational Rehab team. This
was before there was a Peer Support team. Working
I love getting to know so
many different people and
their whānau.
—Meika Reid
alongside people to talk about returning to work or
looking at new careers and training, always came with
conversations about living with an SCI, teaching, problem
solving etc so there has always been an aspect of Peer
Support within my role.
Seeing the difference support from a peer can make,
having this opportunity to switch my role to concentrate
on Peer Support and also growing it in our communities
felt like a natural move across to something else that can
make a difference in people’s journey after an SCI.

NEW ZEALAND SPINAL TRUST 22
What do you enjoy about this role and supporting
others on a journey with an SCI?
I love getting to know so many different people and their
whānau, it’s special and a privilege to be part of their
rehab journey.
What’s the best bit about the job?
The people, the opportunity to listen, to share and to
make a difference. We are fortunate to all be part of an
amazing team who all have the same passion for helping
others to adjust to life after an SCI.
What advice do you offer to people when they are
about to go into the big world and leave the support of
the Spinal Unit?
It really depends on the person, their whānau and what
their discharge home looks like. Sometimes it can be
really practical advice, other times it may be more
emotional support and advice.
But it is always positive and with the reassurance that
things do get easier and that we are there to continue to
support them once they are home with our Community
Peer Support programme.
What does it mean to have ACC helping to fund
Peer Support?
This is an amazing opportunity to have Peer Support
recognised as a valuable and meaningful service. It
makes a huge difference in people’s lives and allows us to
roll out Peer Support across both the Burwood Spinal Unit
catchment area of Taupō south and the Ōtara Spinal Unit
covering the rest of the North Island through Spinal
Support NZ, who we are working closely with.
Why is Peer Support important?
Peer Support offers a unique understanding of the
individual’s situation. The lived experience of all of our
Peer Support team gives the person an ear to listen to
them and truly understand and feel what they are going
through. Offering advice, encouraging them to have a
voice and to be in charge of their health, as well as
understanding the impact of their SCI, and pointing them
in the right direction for any help needed.
What is your background, how did you get involved
with working for the NZST?
I had worked in a microbiology lab full-time prior to
coming to work with the Spinal Trust to help others get
back into meaningful employment after their SCI. It’s
been great to be working with and alongside others with a
spinal cord injury.
Take me back to the day of your SCI what happened?
I was 17 years old and had a bleed in my spine which
caused damage to my spinal cord. I’m T5 paraplegic, so
have no feeling or movement below this level.
What year was that and what are some of your
memories of your recovery and rehab?
My SCI was in 1991, my memories of rehab here at
Burwood are mostly of the fun that we had with some
BEEN THERE, DONE THAT: Meika Reid is only too
happy to pass on her lived experience with an SCI.
brilliant nurses, who made the start of each day
distracted from the realities of our injury. I also vividly
remember the extent of the fatigue and exhaustion of the
physical rehab. Just pushing to the gym and then falling
asleep while in the standing frame.
How does that first hand experience of recovering
from an SCI help you in your role in Peer Support?
Lived experience gives us a unique insight into
understanding everything involved with living with an SCI.
I know that life can still be great, and I know that we just
sometimes need to do things a little bit differently. I’d like to
think that I’m pretty good at finding ways to do things.
What is some advice you received back then that you
pass onto others now?
Find something that you love doing.
—Meika Reid
Peer Support offers a unique
understanding of the
individual’s situation.
You are working a full-time job and making a difference
to the lives of others, what do you think young Meika
who just sustained an SCI would think of that?
I think I’d be happy to know that I got through those first
couple of harder years, found enjoyment and great
satisfaction in what I get to do every day. I’m pretty lucky!

SPINAL NETWORK NEWS 23
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NEW ZEALAND SPINAL TRUST 24
Managing Chronic Pain
Joe Evans is a walker with an SCI—he is sharing his story to help others
NOT LOOKING BACK: Joe Evans sustained an SCI in a freak accident.
In the April issue of the Spinal Network News
Gareth Lynch talked about how he manages
his pain using meditation techniques. In this
article Joe Evans, a walker, describes how
despite constant chronic pain he came off his
medications five years ago.
Joe Evans recently contacted the NZ Spinal Trust about
our appeal to rewrite the Back on Track handbook. He
told us that when he had his accident 18 years ago the
book was useful but there was very little information
about what it is like to be a walker.
Joe moved to New Zealand from the UK 20 years ago and
lived in Palmerston North before moving to Christchurch.
Being a walker has its advantages, but as you will read in
this article, appearances can be deceptive.
Five years ago I made the
decision to stop all my
medication.
Tell me about how your injury happened?
—Joe Evans
I was aged 31 and was standing on the balcony of my
home in Christchurch with friends, when suddenly I
crashed through the floor falling seven metres. I was
rushed to Christchurch Hospital and a day later
transferred to the Burwood Spinal Unit. Afterwards I
discovered that the balcony consisted of a fibre cement

SPINAL NETWORK NEWS 25
Going home was a
traumatic experience.
—Joe Evans
strange colour. Looking back now it probably was pretty
stupid of me to go up those steps.
You mentioned that when you left the Burwood
Spinal Unit, you were a walker. What help and support
did you receive? What information would you like to
see in the ‘Back on Track’ for walkers?
BIG HEART: Joe teaching a student at Ara Institute of Technology.
board with unsafe joists which is why I had fallen. At the
time I didn’t think of prosecuting the builder or owner of
the house. I was unaware of building legislation.
How long did you spend in the Burwood Spinal Unit?
What was that like?
I felt I was lucky enough to be a dud. I walked out of the
hospital with an L5 burst fracture, I fractured my hip in
three places as well as permanent damage to my left foot.
Over the years I’ve had 11 surgeries, including a fused
ankle, fused spine and a hip replacement.
I spent seven weeks in the Spinal Unit, I was in so much
pain, but it was a heart-warming experience. The staff
were wonderful and took such good care of me. However, I
was very keen to get home.
While in the Spinal Unit I started physio—I would push
myself very hard and not let frustration get the better of
me. I was quite lucky as it took me only a couple of weeks
to be able to walk completely around the gym on crutches.
It took many weeks afterwards for me to get used to the
placement of my feet as sometimes I wouldn't realise that I
was dragging my foot on the ground as I was walking, and
this would cause me to trip. Unfortunately, this took about
two years to come right. I now walk with a slight limp.
Going home was a traumatic experience, my house is split
level and I wondered how I was going to climb the
stairs—I felt overwhelmed and cried.
Six weeks after leaving the Spinal Unit I climbed the steps
of the Akaroa Lighthouse. I will admit I was very scared as I
still didn't have true sensation under my feet and I couldn’t
feel where I was placing my feet, I had no sensation.
Climbing the steps, was a defining moment for me.
When I was at the top of the Lighthouse looking through
the gaps between the balcony the caretaker came up to
me and asked what had happened to me. I explained to
him I fell through a balcony about the same height as
where we are standing now. Let's say he went a very
When I left Burwood, the first edition of Back on Track
was published. That was a help, but as I was not in a
wheelchair, I felt alone, and I wasn't prepared for what
would confront me.
I would like to see more information in the Back on Track
handbook for ‘walkers’ and what to expect after an SCI.
There were so many things I did not know. We are not in
wheelchairs, so people don’t actually think we have an
SCI. It’s really hard for other people to understand, we are
the ‘unseen’.
Having to give up playing rugby and running must
have been very hard, how did you adjust to the loss of
these activities? Do you do other forms of exercise
and activity?
I had to learn to come to terms with chronic pain,
depression and mourning the loss of the life I had before
my injury. I used to be a runner and play rugby. It was hard
not being able to run and play sport. A player from the
Wheel Blacks team asked me to come along and play with
the team. But I couldn’t as I would have felt an imposter
because I am a walker and didn’t use a wheelchair. It is a
strange feeling to feel old before your time.
I have a busy life which keeps me focused and busy. I’m
trying to lose weight by using a keto diet which is helping.
You mention turning your life around and becoming a
lecturer. How did this come about?
Some years ago, I went through a difficult time, my
marriage broke down and I attempted suicide which was a
turning point.
After five years of not working, I decided to change my life
by studying. I now teach architecture at Ara Institute of
Technology full-time. Through my teaching I focus on
spatial elements and making homes accessible through
design. I have learnt to control my pain without
medication, and I live my life to the full.
Chronic Pain has been a feature of your SCI, how have
you coped? Did you use medication in the beginning?
I was on several different medications: sleeping tablets,
tramadol, codeine, and nerve medications for the sciatic
nerve. So, five years ago I made the decision to stop all my
medication. It wasn’t as awful as I thought it would be. I

NEW ZEALAND SPINAL TRUST 26
planned a lot of distractions and I had just started a
course at Ara which helped a lot. During this time, I was
offered illegal cannabis as people said this would help my
pain. But I didn’t want to go there.
Besides it being illegal I was concerned that taking
cannabis could bring on depression.
Medicinal cannabis oil could have been the next
alternative for my pain relief but by that stage I just
wanted to be off all my medications and only ever use
them when the pain got too severe.
Other things I found that helps with my pain are:
• Listening to music with noise cancelling headphones is
a good distraction
• Using a spa pool. The warmth of the water is comforting
and provides a break from the pain. For the 15 minutes I
am in the pool I stop thinking about the pain
What advice would you offer to other people with an
SCI who are at the start of their journey?
• Talk to others with an SCI
• Use the support systems that are available to you
• Ask lots of questions. I didn’t but wished I had
• Recovery takes time. It’s hard not to feel old before
your time!
• “You can’t hurt what you’ve already hurt!”
• Boom and bust—remember there will be good days and
bad days
• Once you are home, plan your day—spread tasks for
each day so you have something to look forward to
• Know your limits
• It takes several years to adjust after an SCI, so it’s
important to give yourself time to recover physically
and mentally
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SPINAL NETWORK NEWS 27
Outdoors kid from
the ‘Naki reflects on
remarkable life
NZST Board Member Bob Symon shares his SCI journey
over the past 38 years
—Bob Symon
For me the definition of a hero
is someone who has a choice.
You broke your neck as a young man playing rugby,
your life would have changed in a moment?
Yes absolutely. I lived a very different life up until that
point. I loved my climbing and being in the outdoors. I
loved everything about it. I was into mountain running
and tried my hand in skydiving and hang-gliding. I was an
outdoors kid from the ‘Naki. It was a huge shock to have
that all taken away and it took me a long time to adjust.
Following that you went to the Burwood Spinal Unit?
MAKING THE MOST OF LIFE: Bob Symon with his wife Janet.
On 14 April 1984 Bob Symon’s life changed
forever. The NZ Spinal Trust Board Member,
who was studying in his second year at Otago
University, broke his neck in a rugby tackle.
He was 20 at the time and a robust hooker
that loved the game. On that cool afternoon
at Logan Park in Dunedin, the self-confessed
“outdoors kid from the ‘Naki” [Taranaki] was
devastated.
Throughout his rehabilitation at the Burwood Spinal
Unit, Bob was in denial about his situation. But over time
he grasped his reality and committed himself to making
the most of life. He has done that and then some. We
caught up with Bob to talk about the highs and lows over
the past 38 years—he has lived an extraordinary life—and
how a chance encounter with his mate “Staffy” [Paul
Stafford] proved to be a turning point.
I was one of the worst patients at Burwood. I didn’t want
to be there. I wanted to start my new life again. I never
saw myself as someone who was courageous or a hero, you
are what you are. I don’t think you change much because
of your injury. You still have that ambition. For me the
definition of a hero is someone who has a choice. And
then makes that choice to face the adversity.
But as we know when you break your neck you don’t have
a lot of choices, you have got to go with the flow. The
courage part in that situation is making the decision to
get out of bed every morning and carry on. But that is no
different than anybody else. Your life has changed and
that is the way I looked at it. I had to make the most of it.
Maybe it was ignorance or something else, but I just
wanted to get on with it.
What was your experience like at Burwood?
Times were different back then. In 1984 it was a pretty
strict regime at the Burwood Spinal Unit. I was in there
from April until the end of the November. It was a long
time. Along the way I managed to damage my neck again
when I came out of my chair. I went through the
rehabilitation process at Burwood. It was a fantastic
place. I didn’t think so at the time. Hindsight is a great
thing and over time I realised how lucky I was to have
that support.

NEW ZEALAND SPINAL TRUST 28
Back then the philosophy was you take away the choices for
the person because the specialist knew best. Your recovery
was taken over by the specialist and I think there is a lot of
merit in that method. I know it is not the politically correct
way that we rehabilitate people now. Times change.
Was there a turning point in your mindset in
your recovery?
When I broke my neck—and I am now ashamed to say
this—for probably 10 years I didn’t want to be associated
with any other people who had injuries. I was able-bodied
and as far as I was concerned, I was an able-bodied person
who was temporarily sitting down. That was the way I saw
it. I didn’t want to associate with anyone in a wheelchair
because I think that reminded me that I was also in a
wheelchair, and it was quite confronting.
‘Staffy’ came along, and him and a few others from
different backgrounds and they were lovely people. They
were coarse and they were exhilarating. That was a
turning point. I realised I needed to accept my reality.
They introduced me to wheelchair rugby, and I loved
being back in a competitive environment. I loved the
camaraderie and being back with the lads.
How did getting back into sport help?
‘Staffy’ got me into wheelchair rugby around 1992. I
played for the Wellington team and that got me into
meeting people and seeing that I had had a privileged
support network that many others didn’t have.
It was around that time I also realised that I had a voice
and that I could express my opinions and that is really
important—you need to be able to speak up. That is why I
got involved with the NZ Spinal Trust. I wanted to make a
difference for others. It is important there is no monetary
interest in it whatsoever. You have to be involved for the
right reasons. I feel I gain personally from my
involvement with the Trust, enjoying working with truly
dedicated people, and proud of the help it gives to others.
In terms of life since your injury, what happened?
After school I worked for two years in oil exploration in
Taranaki, down south in Tuatapere, and down the East
Coast of the South Island. I was involved in surveying and
doing some large projects. When I broke my neck, I
couldn’t do that work anymore which was difficult.
So, I left that and did a Mathematics and Computer
Science Degree at Massey University in Palmerston
North. It was back in the day when I was the only
wheelchair on campus. I had to fight to make it possible. I
left hospital and I went back to university the next year. I
did almost a full year of papers. A lot of people told me to
ease into it however I wanted to do more. I am glad I did
that as it challenged me and taught me to set the bar high.
After I finished my degree and I moved to Wellington, I
put a lot of thought into my approach to a career, working
out what was important, what I wanted to do with my life,
what I wanted to achieve. A first ambition was to
maximise earnings because I realised that my life as a
tetraplegic and trying to do the things I wanted to do, was
going to be expensive.
—Bob Symon
They were coarse and they
were exhilarating. That was a
turning point in my recovery.
How did you begin your career?
I joined BP as a graduate and got to travel a fair bit with
them, a good opportunity to see how I could work as a
disabled person in a corporate in increasingly demanding
roles. I worked in a few different areas within their
Technology division.
After a few years I went contracting and working for EDS
(Environmental Defence Society), who contracted me to
work on other organisations' systems. I became a
specialist in mission critical and highly available systems.
Then I worked for the ANZ Bank which has one of the
largest IT networks in New Zealand. I varied in roles from
assembler coding, application coding, to operations, to
hardware infrastructure build and design and project
management. As a tetraplegic I was organising and
developing the machines and their environments. I have
had a lot of different management roles.
Over the years what I have really enjoyed is the diversity
in organisations and the importance of corporate
responsibility. It is something I am passionate about as a
person with a spinal cord impairment to ensure that there
is diversity and inclusion in the workplace. I have done a
fair amount of work fighting for that and lobbying within
my own organisation and others.
How about your personal life and starting a family?
After I broke my neck, and I came to Wellington it was
all quite raw. In my personal life I had a girlfriend who
got me through life at that stage. From being a walker to
an established tetraplegic. Then our paths went in
different directions.
A year later I met Janet and fell in love and got married.
We have two children Charlie and George. As a family, we
have travelled extensively, something I have always loved
doing. My eldest son Charlie is a year beyond the point
when I broke my neck and doing a Bachelor’s in Surveying
at Otago which has me grinning with pride. After
struggling to figure out what he wanted to do he ended up
going down the same path as his old man. George is year
12 at school, nailing drama and the arts.
What advice do you offer to other people who have
sustained an SCI and are at the start of their journey?
Don’t think in terms of what you can’t do. Think in terms
of what you want to do, and talk it out with family, friends
and colleagues to plan how to do it. Sometimes things
don’t work out, accept that, move on and look ahead. Be
kind and generous, you will never cease to be surprised
how it comes back to you.

SPINAL NETWORK NEWS 29
Telling it like it is
Teina Boyd, a former patient of the Burwood Spinal Unit, describes in
detail the pressure that a shortage of carers is having on her health
What day is this? Day three
stuck in my wheelchair
with no carer? Starting to
get risky now.
—Teina Boyd
“No carer again Mum?”
Turning in surprise, I reactively lift my arm for him to
stoop under…” Hey bub… you’re home early. How was
your day?”
“Good,” he stoops down to hug me. “Is it just us again
tonight?”
I nod as he stands up.
“Are you okay?”
“Yeah of course, small things to giants, right?”
SMILE OF COURAGE: Teina Boyd has a great fighting spirit.
Teina Boyd was a patient in the Burwood
Spinal Unit seven years ago. The Cantabrian
was a recruit for the New Zealand Police
when she fractured her neck at the C5
vertebrae. It changed her life in a moment.
Her honest reflections give us a real insight to
living life with a spinal cord impairment.
Damn it.
I know my new carer is scared to drive in the rain. After
crashing last week, I should’ve known she’d be too scared
to drive in this storm.
Here we go again, another night trying to sleep in my
wheelchair. Another night of no bowel cares or stretches.
Another night of extra painkillers to make sure I don’t go
dysreflexic. Another night trying to reassure bub that
I’m fine.
And then looking down I realise… I’m going to have to go
to work in the morning wearing what I’ve got on now. Grey
trackpants and a hoodie. With little margaritas all over it.
Uuuuuugh…I let my forehead hit the table in front of me.
“Yeah. I guess so… But it’s still crap for you. Want a
coffee?”
Laughing, I accept his offer, knowing full well that he’s
buttering me up for Uber eats and a sleepover later on.
We chat about family while he makes us hot drinks, then
he heads off to the other end of the house to get changed,
leaving me with my thoughts.
What day is this now… Day three stuck in my wheelchair
with no carer?
It’s starting to get a little risky now. My body really needs
to go to the toilet and get some pressure relief. I might have
to swallow my pride and call one of the other girls.
But who?
Grace’s arm is injured, Eden has already done me so many
favours lately… I know she’s exhausted. And that’s it. I
have two people and my teenage son making up my
24-hour care team.
I know my family would be here in a heartbeat but as
much as I would love that, there’s no point.
The help I need is specialised, and takes a lot of training to
do without hurting me.
My girls are more knowledgeable about my body and its
complications than any public hospital nurse. There is an
ignorant perception of them being “just a carer”. To me

NEW ZEALAND SPINAL TRUST 30
—Teina Boyd
I know how lucky I am to be
fully loved, if not fully staffed.
they are amazingly skilled and equally as humble.
Resigning myself to another night in the chair, I listen out
for William. I can hear him singing some Matariki song
from his room.
Wheeling quickly over to the kitchen sink I pour my coffee
out. The last thing I need is that coffee telling my bowel
it’s time to unleash the Kraken. Refilling my cup with
water I put the lid on and head back to the table.
Calling my care agency quickly, I check if they’ve got any
interviews lined up.
Nope.
“There’s just no one Tee…I’ve just moved two of my clients
into retirement villages because I can’t get them a team,
and I’m having to let people go as of next week because
they haven’t had their boosters. My job is near impossible.
I don’t know what to do.”
Resting my head on the table again, I listen and
sympathise. I can hear how much she wants to help and
the frustration behind her words.
Picturing my friends being left alone… stuck, unable to
eat, unable to move, unable to wash or toilet themselves.
Unable to live…. And then being shipped off to a
retirement village?
And here I am worried about wearing my PJs to work.
Man, toughen up girl.
Hanging up the phone I bring my focus back to home. The
reality is if I don’t have someone turn up soon, I’m
probably going to go dysreflexic and need urgent medical
care myself.
My family are the best and I’m so grateful that they come
and spend the nights with me when my team fails…But I
don’t need cups of tea, I need bowel cares. I don’t need
someone to sleepover to keep me safe, I need someone to
put me in my bed and do a skin check.
Exhale.
Ok, time to swallow that pride.
“Hey girls, if anyone is free this evening, may I please
have some help getting into bed and doing cares?”
Putting my phone down on the table, I swallow hard,
trying not to get my hopes up.
If someone can just come and get me into bed, and help
my body do its thing at least I know I’m safe… I’ll just have
to zoom into work tomorrow from bed. No biggie.
LOVE: Teina and William are best mates.
What is this boy doing? I bet he’s looking in the mirror
with his comb and a whole pot of gel in his hair again.
Quietly sneaking down the hallway I realise his voice is
coming from my room. Oh…What’s he doing in there?
Speeding up I race around the corner, ready to snap him
getting up to mischief…But then I see what he’s doing.
He has the curtains closed, with the heater on. He’s raised
the bed as high as it will go and put a pillow on the edge,
so I can lean my chair back and lay my head down.
He’s pulled the blankets down on the other side of my bed
and put one of his teddy bears and his reading book there.
I can see he’s dragged the dog’s bed into my room as well.
He looks at me… “Is that good Mum?”
Grinning at him full beam, I’m really proud.
“Of course, bub, whānau sleepover it is.”
He smiles back, hopeful that he’s earned McDonald’s for
dinner.
Racing back to my phone I order his McDonald’s and see
the girls have replied. One is in Auckland and the other in
Rotorua. But both willing to drive back if I’m in trouble.
“No, no I’ll be okay ‘til tomorrow, no biggie! See you in the
morning Eden… We’re pulling a sickie and giving this
body a full wash, W.O.F and service.”
Smiling at my phone as I read their funny replies, I shake
my head. Somehow between the four of us we are making
this work.
With my overly sensitive body and how often it chokes, it’s
risky and I don’t know how the bloody hell we are
navigating these barely staffed waters without any
damage… But we are.
And I guess, like so many other disabled New Zealanders,
I’m just hoping for the day I have a full team- so I can have
a full life.
But until then, we’re coping.
Laying my head down tonight, trying to find space
somewhere between bubs and his dog…. I know how lucky
I am to be so fully loved, if not fully staffed.
I can still hear William singing from the other end of the
house, so turning my chair I wheel towards his voice.

SPINAL NETWORK NEWS 31
Road Trip
Hamish Ramsden sustained an SCI almost 30 years ago on his Hawke’s
Bay farm. He has plenty of life experience to pass on. He writes for the
SNN to help others. Hamish offers an unique and humorous insight into
living with a spinal cord impairment.
Everyone likes a good
road trip, right?
—Hamish Ramsden
There is nothing like that nice warm toasty feeling of the
cabin (like a rest-home) with that very distinctive smell of
fresh vomit to tip you over the edge yourself.
POSITIVE: Hamish always looks on the bright side.
Everyone likes a good road trip, right? It
is the chance to get out and about, to see
the countryside and see what effect the
current season is having on it. But you need
to be organised.
Living in the South Island many of my road trips involve
heading back to the North Island to see my parents or
daughter or to go to a meeting of some sort. I tend to break
the journey into four stages:
Stage I involves getting up early and hitting the road by 8
o’clock in order to catch the 2pm ferry. Not a problem
usually and it’s always good to get on the road early; but
any bloody roadworks tends to raise the tension levels.
You don’t want to be late for the ferry.
Stage II trying to explain to the ferry workers that I need
at least one car width on the left-hand side of my car in
order for the car ramp to have room to go down for me to
be able to access and exit the car. Most of the time I’m
travelling at off-peak times so it is okay but I can’t help
feeling there is an element of luck involved each time as to
whether I will have enough room or not.
Stage III is enjoying the three-hour ferry trip. I love checking
out the Marlborough Sounds as I go north and imagine
owning or using one of the many very attractive baches that I
see on the way. When we head out into Cook Strait
anything more than a level two swell is not that great.
In fact, on my last trip the water was breaking over the
bow of the ferry and people were being sick everywhere.
Breathing through your mouth to try and avoid the smell
doesn’t work, this type of smell infuses your body, it gets
into every grain of your being. Luckily, I managed to
maintain my dignity.
Stage IV is getting off the ferry in one piece and hitting
Wellington and invariably a short trip to stay in a nearby
motel, as we have had a big enough day. I say we as I need
to take a support person with me as it just makes the
organisation a lot easier and anyway, without them, I
wouldn’t be able to get anywhere, as I cannot drive!
The next day involves a reasonable roadie ending up at
my parents' in Napier or at my meeting venue, wherever
that may be. The meeting can be a bit hard on the old
brain matter though as talking and thinking non-stop for
eight hours tends to make one a bit weary. But it is a good
sort of weary, the one you know when you’ve done a good
day’s work and you don’t mind feeling buggered.
The whole process is then to be repeated in the reverse
order on the way home. So, what are my take home points
from the old roadie?
1. Be organised, always take more than you think you will
need, and remember no one will ever drive like you would.
2. Get as much information about your accommodation
as you can (you don’t want surprises like an
inaccessible shower).
3. Never take a landscape for granted; be impressed by
the big landscapes, appreciate the small ones.
4. Travel often while you can as you may not know when
you will be able to do it next.
5. Appreciate the effort, never feel that you have to go but
avoid the excuses not to.
Life is about creating memories, so get out there and
create some more.

NEW ZEALAND SPINAL TRUST 32
What’s new in the
Resource Centre
August 2022
My Life: this is how I roll, by Grant
Aickin with Basil Avery, 2022
“Will I ever have a girlfriend again?
Will anyone be interested” says Grant
immediately after his traumatic
spinal cord injury at 16 years of age.
In his book My Life: This Is How I Roll,
Grant discusses navigating
relationships, work, sport, and family
life, all told with touches of humour.
Grant shares the importance of the
love and support provided by his
family and close friends and
especially acknowledges Harriet, the
love of his life.
This Changes everything: the
honest guide to menopause and
perimenopause, by Niki Bezzant,
2022
Niki Bezzant has more than 20 years'
experience writing and speaking about
health and nutrition. In this book, she
shares all the latest research and
advice, giving readers real information
they can use on everything from
recognising and understanding
common symptoms like mood
changes, weight gain, low libido,
erratic and heavy periods, hot flushes
and insomnia, to managing mental
health, sexuality and relationships,
exercise and nutrition tips.
She explains which natural and
medical treatments actually work
and how to get the best help, with a
healthy side-serve of humour, calling
out sexism, snake-oil and bullshit
along the way.
My Journey Starts Here: a guided
journal to improve your mental
well-being, by Genevieve Mora and
Jazz Thornton, 2021
Jazz Thornton has achieved huge
international recognition for her work
in advocacy for mental health and the
use of voices of lived experience to
provide hope to those who are
struggling. This journal, written with
Genevieve Mora, her co-founder of the
organisation Voices of Hope, provides
a creative approach to self-help in
mental health and well-being.
The attractive pages will help guide
the user in personal reflection,
goal-setting, organising support
systems and creating strategies for
difficult moments. It is a practical and
creative outlet for those struggling with
mental health or simply looking to
improve their personal outlook on life.
The Bookseller at the end of the
world, by Ruth Shaw, 2022
A rich, immersive, funny and heart
breaking memoir of the charming
bookseller who runs two tiny
bookshops in the remote village of
Manapouri in Fiordland, in the deep
south of New Zealand.
Ruth Shaw weaves together stories of
the characters who visit her
bookshops, musings about favourite
books, and bittersweet stories from
her full and varied life.
Journals/magazines
Dynamics of Human Health
Vol 9 Issue 1, 2022
Forward UK SCI: Sex and
relationships with SCI
Issue 166, Spring 2022
New Mobility
Issues 340-342, 2022
Spinal Network News
Vol 23 no. 3, Dec 2021
Topics in Spinal Cord injury
Rehabilitation
Vol 28 no. Spring 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 33
Pain and SCI
The Burwood Academy Trust (BAT) Winter 2022 Update
—Dr Johnny Bourke
Having a clear understanding
of what works for who can
help us to ensure everybody
feels valued and supported.
person, their life and environment. The plan for
managing it also needs to be unique to the person—their
interests, strengths, needs, values, and resources, and
those of their whānau.
HUGE OPPORTUNITY: Dr Johnny Bourke, the recipient of the Canterbury
Medical Research Foundation inaugural Emerging Researcher Fellowship.
After the NZ Spinal Cord Injury Action Plan
Evaluation (SCIAPE) for ACC showed that
pain management was an area of ongoing
concern for people with spinal cord
impairment (SCI), BAT set out to explore the
kind of pain management services that
people living with SCI have experienced and
what they would like most in the future.
A group of people from Canterbury and the North Island
with lived experience of pain and SCI generously shared
pain journeys and rich insights that were similar to
reports coming out of other Australasian and
European countries.
For the majority of people with SCI, pain is an
ever-present issue, whether it is in the foreground or
background of life. Medications are only one potential
solution to living with pain and are seldom the full
answer alone. This is because the experience of pain is
not only physical, but it also has social and psychological
elements woven throughout. Movement, yoga and
meditation, swimming and breathing techniques can
help manage pain. So too can positive, supportive and
engaging interactions, hopeful mindset, the stimulation
and flow of work and reducing the burden of some of the
other physical challenges that may come with SCI.
The experience of pain is unique to the individual and has
a complex interrelationship with many aspects of the
People with pain want to draw from a wide range of
strategies and treatments to help them explore and
manage their pain in a way that is best for them. Others
who have experienced or are educated in the complexities
of life with SCI are a valued resource. This includes health
professionals as well as peers and mentors. Of major
importance is sharing knowledge of SCI and pain
amongst everyone involved, from hospitals to GPs,
community providers, funding organisations and those
living with SCI around the world.
Learning about pain and being able to tap into a range of
management approaches is valued very early on after SCI
to prepare for the long and winding road ahead during
which there will be times when pain is at top of mind and
in the background at others. We heard that being able to
access support for pain as and when it is needed through
the years after SCI is not only about thriving—it is
sometimes a question of survival.
This is easier said than done! The participants in this
study often felt at a loss as to how to find the right people
and information they needed to manage their pain—
sometimes it felt like it came down to sheer luck or their
own proactivity and ‘bush-bashing’—and so they were
keen to have more signposts and clearer, smoother
pathways as well as knowledgeable companions to help
them find their way to the right support for them.
BAT is in the process of writing up an article for
publication from this study. In the future, we would like
to expand the research to explore how we might draw on
these insights to build services that best meet the needs
of people experiencing pain after SCI in New Zealand. We
will keep you posted!
We were pleased to be able to introduce the project and
share and record some common aspects of the
participants’ stories in the BAT Peer Group meeting
in March.

NEW ZEALAND SPINAL TRUST 34
ACADEMICS: Julianne Johns (Research Assistant) with Dr. Johnny Bourke.
Canterbury Medical Research Foundation Inaugural
Emerging Researcher Fellowship
We are delighted to announce that Dr Johnny Bourke of
the Burwood Academy Trust was recently announced the
recipient of the Canterbury Medical Research Foundation
inaugural Emerging Researcher Fellowship.
Dr Bourke is incredibly grateful to receive the fellowship
and excited to begin his project which aims to identify
what makes a quality relationship between disabled
people and support workers.
He explains: “Without good quality disability support
workers, disabled people can’t live all aspects of their
lives, from getting dressed to getting about the
community and everything in between.
“As someone who lives with a high-level spinal injury who
requires support workers, I’ll often ask people to imagine
having a person in your life almost all day and having to
ask them to complete almost every task you wish to do.
“Having a clear understanding of what works for who can
help us to ensure everybody feels valued and
supported—from the working conditions for support
workers to the quality of life for disabled people.
“We know the disability support workforce sector is under
increasing pressure. Disability support workers are
—Dr Johnny Bourke
For the majority of people
with SCI, pain is an everpresent
issue.
undervalued and finding good quality support workers is
becoming harder and the number of people requiring
them is increasing.
Ultimately, by understanding what works for everybody,
we hope to help build a more resilient and positive
support worker sector.”
Dr Bourke’s research will be conducted over 12 months
beginning in July 2022.
For updates on these and other Burwood Academy Trust
projects underway and Peer Group recordings, visit
www.burwood.org.nz

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.
Rehabilitation
Welfare Trust
The Elizabeth Ball
Charitable Trust
Air Rescue Services Ltd
Deluxe Box
Riccarton Rotary
Charitable Trust
Crusaders
Canterbury Masonic
Charitable Trust
Cube Design
Rotary Club of Avonhead
A F W and J M Jones
Foundation
Fresh Choice Parklands
Rotary Club
of Christchurch
Hyman Marks
Charitable Trust
Burwood
Volunteers Trust
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