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<strong>August</strong> <strong>2023</strong><br />
Volume 26 / <strong>Issue</strong> 2<br />
Te Tarahiti Manaaki Tuanui<br />
<strong>SNN</strong>Spinal Network News<br />
BARRY CARDNO’S LOVE<br />
OF FLYING—“UP THERE<br />
I AM NOT DISABLED.”<br />
KICKING IT—<br />
JOHN MARRABLE’S<br />
FIGHTING SPIRIT<br />
RIDING HIGH—WE LOOK<br />
BACK ON THE TOUR OF<br />
NEW ZEALAND<br />
A Lasting<br />
Legacy<br />
We pay tribute to<br />
Dr Richard Smaill
NEW ZEALAND SPINAL TRUST 2<br />
Contents<br />
3<br />
Editorial<br />
A road trip to reflect on change<br />
26<br />
Ageing Well with an SCI<br />
Phil Melrose reflects on the effects of ageing<br />
5<br />
Supporting Positive Futures<br />
Hans Wouters—CEO NZ Spinal Trust<br />
28<br />
Alan Pullar tribute<br />
We look back on his incredible life<br />
8<br />
Learning to Fly<br />
Barry Cardno’s story of resilience<br />
30<br />
Library<br />
New additions<br />
13<br />
The Right Man for the Job<br />
Meet Peer Support team member Brett Ladbrook<br />
32<br />
Buying a Car<br />
Hamish Ramsden’s column<br />
15<br />
Tour of Duty<br />
Taking on an incredible challenge to raise funds<br />
33<br />
Milner Mobility<br />
Gearing up to help the SCI community<br />
19<br />
Karate King<br />
John Marrable’s fight to help others<br />
35<br />
Funders and Sponsors<br />
22<br />
Tribute to One of the Greats<br />
Dr Richard Smaill<br />
EDITORIAL TEAM<br />
Peter Thornton (Editor)<br />
CONTRIBUTING WRITERS<br />
Peter Thornton<br />
Dr Bernadette Cassidy<br />
Tina Morrell<br />
Hamish Ramsden<br />
Su Marshall<br />
Hans Wouters<br />
Bernadette Cassidy<br />
Hans Wouters<br />
THANKS TO THE FOLLOWING<br />
FOR IMAGES IN THIS MAGAZINE<br />
Barry Cardno<br />
Su Marshall<br />
John Marrable<br />
Allan Pullar's family<br />
NZ Spinal Trust<br />
Hamish Ramsden<br />
Milner Mobility<br />
TONZ<br />
Su Marshall<br />
Patrons of the New<br />
Zealand Spinal Trust,<br />
Sir Tim Wallis (left) and<br />
Trevor Harrison (right).<br />
SPINAL NETWORK NEWS is<br />
published by the NZ Spinal Trust<br />
Send your contributions to:<br />
The Editor SPINAL NETWORK NEWS<br />
c/- New Zealand Spinal Trust, Private<br />
Bag 4708, Christchurch 8140<br />
Tel: (03) 383 9484<br />
Email:<br />
peter.thornton@nzspinaltrust.org.nz<br />
Web:<br />
www.nzspinaltrust.org.nz<br />
Copy Proofing: Bernadette Cassidy<br />
and Su Marshall.<br />
Cover Photo: A legend of the Trust,<br />
Dr Richard Smaill.<br />
Disclaimer: The views expressed<br />
in SPINAL NETWORK NEWS are<br />
those of its contributors. They do not<br />
necessarily represent the opinion<br />
of the members of the Editorial<br />
Committee or the policies of the New<br />
Zealand Spinal Trust.
SPINAL NETWORK NEWS 3<br />
A Road Trip to<br />
Reflect on Change<br />
Peter Thornton<br />
Editorial<br />
HOME AWAY FROM HOME—We fell in love with Wellington in our three years living there.<br />
It’s pitch-black when the alarm goes off<br />
and it takes me a few moments to figure out<br />
where I am.<br />
The day we’ve been dreading has arrived. An Uber is here<br />
for Katie, the girls and Toby to get to the airport, and I<br />
have a nine-hour drive ahead of me, with our cat Murphy.<br />
After three years of living in Wellington, we are packing<br />
up to head north to our home in Mairangi Bay on<br />
Auckland’s North Shore.<br />
Living in the capital was better than we could have<br />
imagined. It was the best chapter of our family’s story so<br />
far. As I am driving through the dimly-lit streets of<br />
Khandallah for a final time, I reflect on the great<br />
memories we take home with us.<br />
Almost two years ago our boy Toby Mark Thornton was<br />
born here. Bringing him home, with Katie’s mum Trish<br />
waiting to meet him, is a moment we’ll always cherish.<br />
I think of Charlie’s first day at Cashmere Avenue Primary<br />
School. She was so brave.<br />
Change is hard. It’s<br />
unsettling. It puts you out<br />
of your comfort zone and<br />
challenges who you are.<br />
I smile when I remember the joy on Georgie’s face when<br />
she mastered riding her bike for the first time around<br />
Oriental Bay.<br />
I can hear the laughs and the banter across the road at our<br />
great mates’ Julia and Andrew’s place who hosted us for<br />
countless beers and pizza nights.<br />
Our church showed us what it means to be part of a<br />
community, and the friends we made there, are quite<br />
simply, friends-for-life.<br />
But just like that, it’s all over.<br />
—Peter Thornton
NEW ZEALAND SPINAL TRUST 4<br />
—Peter Thornton<br />
While there’s sadness to<br />
be driving away, there is<br />
also real excitement about<br />
what is next.<br />
living with a permanent injury or illness. The moment<br />
—as Andrew puts it—“when the chickens come home<br />
to roost”.<br />
HAPPY FAMILY—Our family have settled well back home in Auckland.<br />
While there’s sadness to be driving away, there is also real<br />
excitement about what is next. We’re moving back into<br />
our own home. We will be back with our family. We will<br />
ensure that for the next 15 years our kids are settled and<br />
secure as they make their way through their school.<br />
It’s time for the next chapter.<br />
Back to my cat for a second. Murphy spent the first two<br />
hours of our journey meowing like he’s only got a few<br />
moments to live. I remember the Vet’s advice who<br />
suggested ‘Give him the sedative right before you leave<br />
and after two hours he should be out like a light’.<br />
Moments later. Silence. Golden silence. He doesn’t make<br />
another peep until we hit the rush hour traffic<br />
approaching Auckland’s Harbour Bridge.<br />
After singing my heart out to Crowded House, Shihad and<br />
Foo Fighters’ back catalogue, I think about the concept of<br />
place. The places we spend our minutes, hours and days<br />
that capture our memories and feelings. They provide the<br />
setting for our lives to unfold—it’s impossible to recount<br />
those moments without the attachment to that place.<br />
Change is hard.<br />
It’s unsettling. It puts you out of your comfort zone and<br />
challenges who you are.<br />
As the kids, settle into their new school we’ve been telling<br />
them: ‘Be brave’, ‘Just be yourself’, ‘Take it one day at a<br />
time’ and ‘Never give up’. Sometimes I wonder when I’m<br />
telling them this advice, that deep down I am also talking<br />
to myself.<br />
We are back home and we love it. But it’s different. I<br />
realise that, I have it easy. I think of the many people who<br />
I’ve talked to about the hardest step in their rehab from a<br />
spinal injury—going home.<br />
Andrew Hall, who runs our Peer and Whānau Support<br />
team among many other things, summed it up so well.<br />
That is the moment when the reality hits people they are<br />
The physical rehab is one thing but the mental recovery is<br />
also complicated. The person isn’t the same as they were<br />
before their injury and all of a sudden navigating their<br />
own home is a huge struggle. It’s supposed to be their safe<br />
place, but there are barriers everywhere.<br />
They go from the best environment possible for catering<br />
to their needs—the Spinal Unit with help always available<br />
and care a push of a button away—to being at home.<br />
There are loads of bittersweet memories and no escaping<br />
the reality that now, life is different. And that’s not even<br />
mentioning going out into the world.<br />
It’s a hugely confronting moment.<br />
And the worst thing of all is no-one really gets it. Unless<br />
of course you have been on that same path yourself.<br />
Family still love them to bits. They are there for them as<br />
best they can be, but it’s not the same.<br />
It’s a lonely old road.<br />
But the good news is—as so many people will tell you—it<br />
only gets better. And the NZ Spinal Trust and Spinal<br />
Support NZ partnership with ACC to fund Peer and<br />
Whānau Support has been a ground-breaking push<br />
forward. It’s making a huge difference in formalising our<br />
community to support one another and help with every<br />
stage of life. I hope there is more to come.<br />
Of course, we can all help. We can all make conscious<br />
decisions to look out for one another, and create<br />
community wherever we are.<br />
For people with a spinal cord impairment, that support<br />
can be the catalyst to living an independent life or not.<br />
Every person who has come through the Spinal Unit and<br />
gone on to their own journey has been down this same<br />
path. They have faced their challenge head on, grieved<br />
when they needed to, and been supported and then<br />
supported others to live a life that is worth living.<br />
Change is hard. No doubt about that.<br />
But if you are on this journey, take your time and when<br />
you are ready, reach out for a chat. There will be someone<br />
waiting to help you, just like they were supported. They’ll<br />
help you find the next chapter in your story.
SPINAL NETWORK NEWS 5<br />
Supporting<br />
Positive Futures<br />
Hans Wouters<br />
CEO’s Column<br />
THE TEAM—The NZ Spinal Trust team catching up for one our culture club sessions in April with facilitator Jemma Balmer.<br />
Simon Sinek, an author I admire, says:<br />
“A team is not a group of people who work<br />
together. A team is a group of people who<br />
trust each other”.<br />
Having trust in a team requires individual personal<br />
responsibility, encouraged and supported by a culture of<br />
authenticity, empathy and sound logic. The culture at NZ<br />
Spinal Trust is fresh, healthy and current, and informed<br />
by 28 years of experience and influence. Influence from<br />
our founder Prof Alan Clarke and many, many others<br />
along the way.<br />
One wāhine whose influence was profound in our early<br />
days and whose input certainly added richness to our<br />
culture is Mere Hibbs. Mere is a humble kuia who has<br />
been the kaiwhakahaere of the Burwood Ranga Hauora<br />
service for more years than we can count. Our team along<br />
with the Burwood Academy team had the great privilege<br />
to honour Mere in a private event of thanksgiving upon<br />
the occasion of her impending retirement.<br />
—Hans Wouters<br />
The culture at NZ Spinal Trust<br />
is fresh, healthy and current.<br />
Everyday thousands of people enter Burwood Hospital<br />
and pass a highly significant whakapakoko (statue) that<br />
guards, welcomes and encourages healing and wellness of<br />
body and spirit. Mataamua is an impressive<br />
two-metre-high Oamaru stone carving created in 2003 by<br />
inpatient tetraplegic Rihare Welfare (Ngāti Porou).<br />
Mataamua would not be there if it were not for Mere and<br />
her profound work with Rihare. In early 2017 with great<br />
care and love Mataamua was moved to the new foyer of<br />
Burwood Hospital where it continues to cut an imposing<br />
figure today. The CDHB CEO at the time called Mataamua<br />
“The Heart of Burwood”.
NEW ZEALAND SPINAL TRUST 6<br />
—Julian Verkaaik<br />
An artist can't help but leave<br />
fingerprints on the work<br />
that they give to the world.<br />
Fellow supporter of Rihare's impressive work Julian<br />
Verkaaik said about Mere at our function “Mere, an artist<br />
can't help but leave fingerprints on the work that they give<br />
to the world. Look around you. Your fingerprints are<br />
everywhere. They exist in my own changed view of the<br />
world and of the value of te ao Māori (the Māori world).<br />
They show in the sculpted forms of Mataamua as he<br />
stands guard over Burwood. They echo in the stories of<br />
Rihare Welfare and the many others whose lives you<br />
touched. Thank you for all you created through Ranga<br />
Hauora and in the other communities you served.”<br />
We owe a lot to Mere who unwittingly helped create our<br />
team culture and we will always be grateful to her for her<br />
lasting gift.<br />
Twice a year our entire team gathers for what we call<br />
‘Culture Club’ where we connect with each other, learn<br />
something important and solve a problem together. Our<br />
most recent culture club was facilitated by the impressive<br />
Jemma Balmer of Barrer and Co where we reflected on our<br />
‘Why, What, and How’ together to create the basis of a<br />
documented Service Delivery Model. It is so important to<br />
work together 'on' our organisation from time to time and<br />
not be restricted to work 'in' the organisation.<br />
Our two days together were punctuated by the funeral<br />
service of Dr Richard Smaill who was a hugely important<br />
person to us. I worked on Trust business with Rich for<br />
over 11 years enjoying many, many hours with him as we<br />
discussed how to support positive futures for individuals<br />
and their whānau living with the effects of spinal cord<br />
impairment.<br />
SPECIAL STATUE—Mere Hibbs with her son Dallas stand next to Mataamua,<br />
the statue that guards, welcomes and encourages healing of body and spirit.<br />
Our work, our mentors and influencers past and present<br />
all inspire me to live the most of every day that I am<br />
blessed to have. Our team believe this emphatically too<br />
and we do everything we can to have our positivity,<br />
optimism and grit rub off on the new patients we have<br />
the privilege of supporting and caring for.<br />
Kia kaha, kia māia, kia manawanui—be strong, be brave,<br />
be steadfast.<br />
Rich served on our board for 13 years and was a very<br />
successful chairman for nine of those—we will be forever<br />
grateful to Rich and his family for his dedication to NZST<br />
and the hard work and constant support he always<br />
delivered. Even after he left our board Rich held a keen<br />
interest in our work and Andrew Hall and I would pop<br />
over occasionally, with a quality Pinot of course, and talk<br />
shop. I am sure you will enjoy our tribute to this great<br />
man on page 22. We have had several other sad moments<br />
this year with the passing of the indomitable Alan Pullar<br />
whose 50 years in a chair was celebrated in our <strong>August</strong><br />
2017 <strong>SNN</strong> (see page 28) and also the passing of George<br />
Scrimshaw’s beloved wife Kay.<br />
George is another mover and shaker from our formative<br />
days who still maintains a very keen interest in our work.<br />
Our hearts go out to George, Barbra and Paulette as they<br />
adjust to the loss of their life partner and look to a<br />
different future.
SPINAL<br />
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NETWORK NEWS<br />
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7<br />
Driving Hand Controls<br />
For those who<br />
High level assessment van now available<br />
Based at Braidens International in Carterton<br />
For more information contact Fadiel NZ<br />
on +64 98020897 or enquiries@fadielco.nz<br />
www.fadiel.co.nz
NEW ZEALAND SPINAL TRUST 8<br />
“Get on With It”<br />
Barry Cardno's incredible story of inspiration and resilience.<br />
CRASH SCENE—The Fletcher topdressing plane crash in which Barry's flying career was ended in an instant.<br />
Barry Cardno has no memory of the moment<br />
when his life changed forever on 8 May 1995.<br />
Barry was 21-years old, from Dunedin and<br />
was involved in a plane crash near Taupō<br />
while working as a commercial agricultural<br />
pilot. He became paralysed from the waist<br />
down, but the accident hasn't held him back<br />
from living life to the fullest.<br />
We caught up with the 49-year-old to reflect on his<br />
accident, being inspired by the Guinea Pig Club and the<br />
incredible feeling of getting back in the air again.<br />
Take me back to the day of your accident,<br />
what happened?<br />
I can’t remember the crash. But I remember getting up<br />
that morning, it was a fine day, as I set off to work with<br />
instructions over the phone from my boss. He should have<br />
been in the plane with me or supervising from the<br />
ground. My logbook shows that I had flown 30 hours less<br />
than what I should have to be out by myself in what is a<br />
high risk occupation.<br />
After topdressing a hillside at around 70 feet towards the<br />
west, it appears I pulled up to get some clearance before<br />
—Barry Cardno<br />
I was pretty upset. My lifetime<br />
ambitions appeared to have<br />
been shattered in an instant.<br />
turning the plane back on itself to do a run in the opposite<br />
direction. It was a tight triangular block, but pulling out<br />
of the turn the plane’s wings stalled and it slammed into<br />
the ground.<br />
I was lucky to survive. It took rescuers an hour and a half<br />
to get me out of the wreck. Unconscious, I was flown by<br />
rescue helicopter to Waikato Hospital.<br />
What were the doctors concerns on your arrival?<br />
They initially thought my aorta was severed so they<br />
cracked some ribs to get into my chest. It wasn’t. Stitched<br />
up, and in a drug-induced coma, I was wheeled to<br />
Intensive Care, where every two hours nurses rotated me<br />
for pressure relief. However, 27 hours later they said to the<br />
doctors ‘we think he might have a broken back’. They
SPINAL NETWORK NEWS 9<br />
—Barry Cardno<br />
The Director of the Spinal<br />
Unit, Professor Alan Clarke,<br />
was a huge inspiration and<br />
mentor for me.<br />
FIGHTING FOR HIS LIFE—Barry<br />
with his mum in Waikato Hospital<br />
looked at the X-rays and realised that as well as a T12-L1<br />
fracture I had a broken neck at C2.<br />
They put a plate in my back and drilled my temples with<br />
the intention to keep my neck aligned and still. When Dad<br />
found out he was furious. He was a paramedic and<br />
confronted them. They admitted it was an oversight to<br />
not have picked up my spinal injuries and acknowledged<br />
that they could have killed me.<br />
It’s highly possible that extra and lasting damage was done<br />
to my lower back in those first 27 hours. Regular rotations<br />
were not the right thing to have done. It was unfortunate.<br />
What happened next?<br />
I stayed in Waikato Hospital for four weeks till my<br />
condition stabilised. Then I was flown down to the<br />
Burwood Spinal Unit where I would take up residence for<br />
five months. To start with I was mostly bedridden. Then I<br />
began a hard gym routine to get back fitness and<br />
flexibility, as well as meeting occupational therapists to<br />
learn how to do tasks from a wheelchair.<br />
In 1998 I moved to Wanaka, where I had begun life as a<br />
toddler. This was to take up an invitation of my childhood<br />
idol, helicopter and deer industry pioneer, Sir Tim Wallis,<br />
to work with him archiving his photographic collection.<br />
Sir Tim, partially paralysed in a 1968 helicopter crash,<br />
regained his licence to fly; but in 1996 he crashed his<br />
historic Mk XIV Spitfire on take-off and suffered a severe<br />
brain injury that would ground him for life.<br />
On finishing that work I took up alpine skiing and<br />
competed in America, Canada, Australia and Switzerland,<br />
but even high on the ski slopes of Colorado I can<br />
remember looking to the skies and thinking I miss flying.<br />
Tearing down a race course at breakneck speed wasn’t<br />
really in my heart. However, I skied recreationally here for<br />
a number of years and enjoyed it immensely.<br />
In 2011 I moved to Auckland to study for a Diploma in<br />
Shipping and Freight Logistics. For the next 10 years I<br />
worked in International Freight Logistics before taking up<br />
employment in a sales role for Melrose Kiwi Concept<br />
After three months, they felt I was ready to venture out of<br />
the hospital with an OT for the first time. Soon after that I<br />
did the same with my parents.<br />
You were 21, training to be a commercial agricultural<br />
pilot, how hard was it going to Burwood and losing<br />
your dreams?<br />
I was pretty upset. My lifetime ambitions appeared to<br />
have been shattered in an instant. I remember lying in the<br />
Burwood Spinal Unit in total disbelief of my situation.<br />
Looking around it didn’t take long to realise that there<br />
were many others in a similar predicament.<br />
But beyond the walls of the hospital I would hear about<br />
people with spinal injuries who had adjusted and<br />
achieved a lot, despite their disability, and in some cases,<br />
curiously, because of their disability. It was a case of<br />
embracing my limitations and not being limited by it.<br />
What was the feeling like when you went home?<br />
I felt very self-conscious. I felt different. My self-esteem<br />
was rock bottom. Initially I moved in with my parents in<br />
Dunedin. There I got to meet people in disabled sports,<br />
and I made a few trips to Christchurch for para tennis and<br />
basketball. I met wheelies who were not despondent, but<br />
happy and joyful.<br />
DOING GOOD —Cessna 172 loaded with wheelchairs,<br />
colleague Rachel Melrose and Barry making deliveries.
NEW ZEALAND SPINAL TRUST 10<br />
TOTAL FREEDOM—Barry with his two-seat Cessna 152 on the beach at Big Bay, South Westland.<br />
Chairs. This change in vocation I am loving, and getting<br />
to meet many wonderful people, colleagues, other service<br />
providers and clients alike.<br />
Were there people at Burwood who inspired you at the<br />
start of your journey?<br />
The Director of the Spinal Unit, Professor Alan Clarke,<br />
was a huge inspiration and mentor for me. He was in a<br />
wheelchair after a spinal injury in 1991. He had been a<br />
pilot prior to his injury, and regained his private pilot’s<br />
license with a bolt-on hand control to operate the foot<br />
actuated rudder pedals. While in Christchurch for my first<br />
reassessment, he took me flying in his Cessna. That was a<br />
turning point for me in realising that regaining my wings<br />
was possible. I wanted to emulate Prof Clarke.<br />
He was encouraging. Prior to the flight I was a bit<br />
apprehensive, but as soon as we were airborne the<br />
apprehension was gone.<br />
My biggest hurdle wasn’t the paralysis, it was the pretty<br />
serious head injury I had suffered. I needed time to recover.<br />
How did your head injury affect your ability to fly again?<br />
Internationally, Aviation Authorities have a minimum<br />
two year stand down for anyone who suffers a head injury.<br />
However, when the two years had passed, the New<br />
Zealand Civil Aviation Authority (CAA) ruled that because<br />
I had been in a coma, I was above a 1 percent threshold for<br />
the risk of epilepsy. With regards to epilepsy, I would find<br />
out that statistically anyone on the planet could have a<br />
seizure, head trauma or not. In my quest to fly again, I<br />
paid for and obtained two neuro surgeons’ opinions and a<br />
neurologist’s opinion. They concluded that after five years<br />
the chances of me having a seizure would be negligible,<br />
well below 1 percent. ‘Just wait a bit’ they said.<br />
—Barry Cardno<br />
I am proud to be a pilot. And<br />
despite being in a wheelchair,<br />
it is very equalising. Up there<br />
I am not disabled.<br />
The CAA though would not budge, as their advisor felt I<br />
would be above the 1% threshold possibly for life. That<br />
was pretty upsetting for me. I felt I had provided the<br />
evidence that I was fit to fly again.<br />
There must be a way I thought….<br />
In 9 June 2006—which was eleven years, one month and<br />
one day since my crash—I returned to the air as a pilot on<br />
my own flying a microlight-certified two-seat Tecnam. This<br />
I flew for twelve months. I went back to the CAA to query<br />
why I was allowed to fly a two-seat microlight anywhere by<br />
myself or with a friend, but couldn’t fly a General Aviation<br />
certified Cessna. They finally relaxed their nonsensical<br />
opinion based ruling and ever since I have been flying twoand<br />
four-seat Cessnas. Freedom at last!<br />
What is the feeling like flying a plane?<br />
It’s immense satisfaction. I am proud to be a pilot. And<br />
despite being in a wheelchair, it is very equalising. Up<br />
there I am not disabled.<br />
Nowadays I fly a four-seat Cessna as a member of a<br />
syndicate, many of whom are airline pilots who fly the
SPINAL NETWORK NEWS 11<br />
plane for fun. It’s great to have this camaraderie and<br />
fellowship. They all say I can fly as well as them and have<br />
even encouraged me to get my commercial license back.<br />
What’s it like providing opportunities for others with<br />
a disability and having them experience flying?<br />
I love to fly for fun and to share the freedom, joy and<br />
accomplishment of flying with other people, especially<br />
disabled people. Maybe what I have achieved will<br />
motivate them to not give up on their own dreams.<br />
Tell me the story behind the Guinea Pig Club?<br />
In 2006 I saw a documentary on the Guinea Pig Club.<br />
Membership was limited to pilots and aircrew from World<br />
War II (1939-1945) horrifically burned and injured in<br />
crashes who had been treated by pioneering plastic<br />
surgeon Sir Archie McIndoe (who was knighted in 1947).<br />
McIndoe referred to his patients as his guinea pigs. Early<br />
in the war, hospitalised Battle of Britain pilots decided<br />
that if they were his guinea pigs, then they would make a<br />
Guinea Pig Club. By the end of the war, 649 pilots and<br />
aircrew had qualified for this exclusive club.<br />
I realised that, like Sir Archie, I had grown up in Dunedin<br />
and had gone to the same high school, Otago Boys High<br />
School. My plane crash was curiously on the same day as<br />
the 50th anniversary of V.E. Day (Victory Day in Europe).<br />
And thinking back to when I was in the Burwood Spinal<br />
Unit, on my first outing I bought a book written by one of<br />
Sir Archie’s patients.<br />
On realising these coincidences, I felt I had to go to<br />
Britain to meet surviving members of the club. In March<br />
2006, I did just that and visited the late surgeon’s<br />
daughter, Vanora Marland, at her London home.<br />
At the invitation of Guinea Pig Club members I made two<br />
more trips to Britain (2006 and 2007) to attend their final<br />
Emblem of Kiwis Can Fly<br />
two annual reunions where they paid homage to Sir<br />
Archie, and reflect upon their shared experiences.<br />
The Guinea Pig creed was: ‘If you are feeling sorry about<br />
yourself and your situation, take a look around, there is<br />
always someone worse off than you who is doing ok. Get<br />
on with it’.<br />
Despite their disfigurements, despite their disabilities,<br />
despite their geographic separation they stuck together.<br />
They looked after one another. Their brotherhood was<br />
something special. I see a similar thing amongst wheelies,<br />
an understanding between us.<br />
After almost 30 years in a wheelchair what advice<br />
would you offer others?<br />
When archiving Sir Tim Wallis’ photos I noticed a plaque<br />
on a wall which read: ‘Don’t be distracted by what you<br />
can’t do’. That has always stayed with me. In some ways I<br />
feel I have got off quite lightly. It is humbling to meet<br />
others more disabled than me, and to see the challenges<br />
they have. It gives perspective. I have the greatest respect<br />
for them and many who just get on with it.<br />
You only get to play this game of life once, so you better<br />
give it a good shot. The older you get the more you realise<br />
that the cogs of time don’t stop.<br />
I am indebted to a lot of people and I am grateful to<br />
everyone who has supported me in my life.<br />
SPECIAL TIMES—East Grinstead, England. Guinea Pig Club annual reunion with Sam Gallop, Bill Foxley, Geordie Holloway, and nurse Kitty Hutchinson.
NEW ZEALAND SPINAL TRUST 12<br />
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SPINAL NETWORK NEWS 13<br />
Meet Our Team:<br />
Brett Ladbrook<br />
We learn more about our Peer Support worker's drive to make a difference.<br />
Never be scared, hold<br />
your head up. You can do<br />
anything you want to.<br />
—Brett Ladbrook<br />
The big memory was cold-calling on newly injured<br />
patients and I had forgot what it was like to be a newly<br />
injured patient, getting back into remembering how it<br />
was, and the challenges that you face.<br />
They were the first memories, and also the first BBQ we<br />
organised as well! The BBQs were a get together for all<br />
the patients down in the dining room. It was the first time<br />
I had helped organise anything like that! It was a little bit<br />
daunting, just making sure it runs properly, but<br />
it worked out ok.<br />
Why did you want to work for the NZST?<br />
HELPING OUT—Brett is always one of the<br />
first people to put his hand up to help others.<br />
Every team needs a guy like Brett Ladbrook.<br />
He is often the first person to put his hand up<br />
to help others and the last to leave whatever<br />
activity or experience he is running. Brett<br />
Ladbrook is a Senior Community Support<br />
Coordinator for the NZ Spinal Trust.<br />
We recently celebrated his 10 years providing peer<br />
support to people with SCI. Brett is a T12, L1 paraplegic<br />
following a motorbike accident. His lived experience of<br />
SCI enables him to support new inpatients and their<br />
whānau. We caught up with Brett to reflect on the<br />
milestone of working at the New Zealand Spinal Trust for<br />
10 years, and what motivates him to help others.<br />
When did you first start at the NZST and what are your<br />
memories of that time?<br />
I first started in 2013, and it was just after the quakes and<br />
our building—the Allan Bean Centre—was still damaged.<br />
I had been in and out of the motorcycle industry in parts<br />
and accessories, as well as the wheelchair industry doing<br />
measure ups, repairs, wheel welding and parts. I had<br />
always been working around other people in chairs and<br />
meeting people in chairs. I enjoyed seeing what people<br />
were getting up to, what they were doing with their lives.<br />
Deb Edmonds had contacted me about a job for a peer<br />
supporter, and I had heard a little bit about what the<br />
Spinal Trust does, but not a heck of a lot! I didn’t know a<br />
great deal, so I was coming to meet her and meeting the<br />
team and just seeing what they were doing and how they<br />
were helping.<br />
What makes working at the NZST special for you?<br />
Putting a positive spin on what is a pretty ‘shitty’<br />
situation. While it is tough going for a start, any spinal<br />
impairment no matter whether you’re using a chair for<br />
mobility or walking, semi-walking, it isn’t as bad as it can<br />
be portrayed.<br />
Especially in the media where the chair is looked at as a<br />
limiting factor, where the chair is something for you to be<br />
able to get out in the community, and go to work, meet<br />
people. There’s just so much out there that people can do.<br />
That always blows me away, with the level of impairment,<br />
as to what people do get up to. So yeah, it really is just<br />
helping people through in a tough situation and seeing<br />
them grow, six months, a year, two years down the track.
NEW ZEALAND SPINAL TRUST 14<br />
What is the story with your accident?<br />
I had a motorcycle accident at the age of 16. I’d moved up to<br />
Auckland for work. During work hours I was out and didn’t<br />
negotiate a bend. Apparently, a truck was partly on my side<br />
of the road and I just dodged it, so it was a slow accident,<br />
damaged T12 and compression fracture of L4/5 and I’m<br />
about a T12, L1 paraplegic as a result of the accident.<br />
What was your experience in the Spinal Unit and<br />
were there people who mentored or supported you<br />
on your journey?<br />
I went through Ōtara Spinal Unit, and I had a pretty quick<br />
time. Six weeks bed rest, because I didn’t get rods put in,<br />
so they let it heal, then I had six weeks rehab, and then I<br />
got sent home, which I moved back down to Invercargill<br />
for family support. That was a real eye opener. I got sent<br />
home on my own, which doesn’t happen now-a-days, you<br />
always have someone going with you.<br />
I had a stopover in Wellington Airport, and was wheeling<br />
around there. After that hour or so stop over, I just sort of<br />
realised, yeah, I can do this, it’s not that hard! So, that<br />
actually did help, and it made me self-sufficient!<br />
I then started coming back for reassessments. I came to<br />
Burwood Spinal Unit for six months, and then yearly after<br />
that for about five years. And I got meeting other people,<br />
and in those days you’d get wrangled into helping at<br />
dinner, with any of the people that couldn’t feed<br />
themselves, or pick a drink up. Again, that was nice to be<br />
able to help out where I could.<br />
Were there any experiences in the Spinal Unit that<br />
stayed with you?<br />
I suppose one thing I did learn was from a guy in his 40s,<br />
that was on six months bed rest at the time with a<br />
pressure area, and it was just healing. That really scared<br />
me into really looking after myself, it was a real eye<br />
opener, and it really stuck with me.<br />
What roles have you held in your time with the NZST?<br />
So, I started off as a peer support worker on the ward.<br />
Currently I’m a Community Support Coordinator, which<br />
involves a team of people from Christchurch South, who I<br />
catch up with, who are our Peer Supporters in the<br />
community in certain areas. My role covers the South<br />
Island, but I do help my work colleague with our get<br />
togethers in the bottom of the North Island.<br />
What do you love about Peer and Whānau Support<br />
and helping others?<br />
It’s the kick I get seeing people after six months and<br />
seeing how they’ve adjusted. And then, the difference<br />
from them leaving the spinal unit as a newly impaired<br />
patient, to someone that’s getting on in the community<br />
full-time, part-time, or getting themselves fit and keeping<br />
themselves healthy and in good check.<br />
How has the funding from ACC and new partnership<br />
made a difference?<br />
It has given us a lot more scope to be able to have people<br />
in the community that can catch up with newly impaired<br />
—Brett Ladbrook<br />
It’s the kick I get seeing<br />
people after six months and<br />
seeing how they’ve adjusted.<br />
patients as well as some of the old timers, that don’t get<br />
out as much. So that’s made a big difference, because we<br />
used to rely on volunteers and you would start feeling<br />
uncomfortable using the same volunteers all of the time.<br />
So we get to connect with more people and let them know<br />
that there’s someone to talk to if they ever need it. It’s<br />
proven very worthwhile, especially for gatherings, where<br />
people swap stories about their impairment, and how<br />
they’ve been dealing with it and getting on in life.<br />
You are always taking people to experience awesome<br />
things - like going to a Crusaders rugby game or to<br />
Highlands Park - what do you enjoy about taking<br />
people out of their comfort zone?<br />
Going to the rugby games is incredibly beneficial for people<br />
to integrate into the community. It’s always hard when<br />
you’re first using a chair with feeling uncomfortable in<br />
these situations and hoping that me being there, navigating<br />
big crowds to get to your seats is a help for people to show<br />
them that it can be done, and it’s not a biggie.<br />
The Highlands Park is giving people the opportunity to<br />
do something totally different, maybe out of their<br />
comfort zone, drive a performance car in a safe<br />
environment. You’d never get that chance anywhere<br />
else in New Zealand.<br />
What is the moment like when people with an SCI<br />
realise that they can do these things and you help<br />
ignite their passion?<br />
Huge satisfaction seeing someone do their first wheel<br />
stand, do their first transfer into the car, or off their bed,<br />
to know that they will be able to handle it, and that they<br />
can do it. That sense of achievement they get is massive<br />
and it’s a bit of a buzz.<br />
What advice do you offer to people at the start of their<br />
journey with SCI?<br />
That life after a spinal impairment, is totally doable. If<br />
there’s anything you want to do, no matter how crazy it<br />
may seem, there’s always someone else that’s done it<br />
before you.<br />
So, never be scared, hold your head up. You can do<br />
anything you want to, whether it’s work or travel, sport,<br />
it’s just done a little bit differently. Having an SCI makes<br />
you look at things a bit differently, it makes you problem<br />
solve, and if you can’t do it how do you do it? Nothing is<br />
beyond the bounds of your capabilities. Just do it!
SPINAL NETWORK NEWS 15<br />
All for a Good Cause<br />
The bi-annual Tour of New Zealand never disappoints. We were there<br />
again to compete and raise funds and awareness for the Trust.<br />
DETERMINATION PERSONIFIED—The spirits were always high in the Permobil NZ Spinal Trust Team throughout the TONZ. Photo credit: TONZ.<br />
The Tour of New Zealand (TONZ) is a<br />
weeklong cycle ride along some of<br />
Aotearoa’s most beautiful roads through<br />
stunning scenery.<br />
Over 100 enthusiastic riders—some highly competitive,<br />
mostly enthusiastic amateurs, all of them highly<br />
motivated by raising money for a favourite charity—to<br />
take on a challenge that can tick off a bucket list item or<br />
two. And the stunning backdrop of New Zealand’s West<br />
Coast and Alpine areas just adds to the overall glamour<br />
and uniqueness of this event.<br />
However.<br />
On the day the TONZ officially kicked off, in the delightful<br />
alpine village of Arthurs Pass, the Permobil NZ Spinal<br />
Trust team of 15 riders were not so enamoured of the view.<br />
In fact, they could barely see the view. The rain was so<br />
heavy that the view was obscured, and concentration was<br />
all about staying upright on the bike as they traversed the<br />
viaduct. “This wasn’t in the brochure” might have been<br />
grumbled a few times …<br />
—Su Marshall, support person on TONZ<br />
Fortunately, all 15 riders<br />
made it safely to Hokitika<br />
and could look back on the<br />
experience as an adventure.<br />
Fortunately, all 15 riders made it safely to Hokitika and<br />
could look back on the experience as an adventure—after<br />
hot showers and a possible bevvy or two. There is nothing<br />
like a good soaking and a death defying descent down an<br />
alpine pass to build a strong bond amongst a group of<br />
relative strangers. The Permobil NZ Spinal Trust team<br />
were tight—a new whānau has been forged.<br />
Our whānau came from across Aotearoa—Auckland to<br />
Roxburgh—as well as one from overseas (Canada) but<br />
they all quickly formed a strong bond. They all shared a
NEW ZEALAND SPINAL TRUST 16<br />
GREAT EXPERIENCE—The camaraderie amongst the NZST team makes the TONZ a great bonding time.<br />
can-do attitude, an appreciation for the opportunity, a<br />
remarkable ability to remain cheerful, and a commitment<br />
to supporting the NZ Spinal Trust. A little bit of<br />
competitive spirit was woven in there too. It was awesome<br />
to have people within our team who had their own lived<br />
experience with spinal cord impairment (SCI). The<br />
evening before we all set off the bikes were checked over<br />
by Liam Keenan who sustained his SCI in a biking<br />
accident. Everyone was on board with what we were<br />
supporting—positive futures for people with an SCI.<br />
It was this commitment that got everyone back on their<br />
bikes the next day for the Ross to Franz Josef leg … in the<br />
rain. At Ross we found that the start was pushed ahead to<br />
Hari Hari—apparently rain wasn’t a problem, but the<br />
threat of tornadoes and hail in the forecast gave pause for<br />
thought. Crikey! That wasn’t in the brochure either! The<br />
team smiled through it and pushed on. Some 68 soggy<br />
kilometres later they all arrived safely in Franz Josef and<br />
a big shout out to the support team: Andrew and Ian (with<br />
help from Niki whose bike had suffered a mechanical<br />
failure) had hot soup and chocolate biscuits waiting for<br />
everyone in the accommodation lounge. My job was to<br />
welcome them to the finish line and direct them to the<br />
warm, dry lounge. I could not believe that they could<br />
all—every single one of them—arrive at the end of this<br />
stage … soaking, freezing, exhausted and STILL be<br />
smiling and enjoying themselves. I thought we might<br />
have been up for a mass mutiny at this point. Also at this<br />
point I realised that the lack of an umbrella was very poor<br />
planning on my part.<br />
—Su Marshall, support person on TONZ<br />
Also at this point I<br />
realised that the lack of an<br />
umbrella was very poor<br />
planning on my part.<br />
While we spent a few hours at Franz thawing out toes and<br />
drying out cycling kit (and a few even made use of the spa<br />
pool), another awesome example of how wonderful this<br />
group of people there was playing out. Philly had<br />
arranged for a friend to deliver (from Christchurch!) her<br />
back-up bike for Niki to use the rest of the Tour. Wow.<br />
Day Three—Fox Glacier to Haast—dawned grey, damp<br />
and cool … but not actually raining. Huzzah! Still, it all<br />
seemed too good to be true so everyone still donned all<br />
their wet weather gear.<br />
Without the distraction of persistent downpours the<br />
different preparation approaches of different team<br />
members became more obvious—Hans took it upon<br />
himself to be team cheerleader (although whether he<br />
truly boosted spirits or just baffled was unclear); Simon<br />
and Topher diligently ensured their social media account<br />
was updated (although they tended to finish well in each
SPINAL NETWORK NEWS 17<br />
—Su Marshall, support person on TONZ<br />
Honestly, I don't think<br />
I could meet a more<br />
awesome, committed,<br />
crazy and generous<br />
group of people.<br />
it. A couple of them just scraped in at Makarora and had a<br />
miniscule 20 minutes of recovery time before starting the<br />
second phase. But they did it. And then they battled their<br />
way to Hawea—a more stoic, determined effort I have<br />
never seen.<br />
In a heartwarming scene, our team were there to welcome<br />
the last riders in—our two AND two from another team—<br />
with a roar of welcome like they were first over the line.<br />
This was the spirit that defined our team’s Tour.<br />
Dinner that night in Wanaka was not the quiet affair one<br />
might have expected—the elation of having conquered<br />
that Pass was palpable. It was a night to celebrate! But<br />
also to get to bed quite early because the Tour wasn’t<br />
over yet.<br />
stage so I presume some serious cycling prep took place<br />
around the photography); serious map and topography<br />
study was always undertaken by Karen and Ken as they<br />
decided where I should wait with the backup battery<br />
(although I always worried I’d be at the wrong spot and<br />
leave Karen hanging); Andrew felt the need to inspire at<br />
every opportunity and delivered motivational speeches<br />
(although I personally felt my speech of “well done, keep<br />
going … it’s sh*t ahead” was more motivating than<br />
anything he said).<br />
The day stayed grey but the rain only ever showered<br />
lightly so everyone took that as a real plus and this stage<br />
instantly became everyone’s favourite so far. Niki took the<br />
time to celebrate with a roadside ice cream on the way, so<br />
I think we all knew she was enjoying herself!<br />
On day four everyone was stunned and amazed to see a<br />
burning fire ball in the sky and seriously considered<br />
running for cover shouting “The sky is falling! The sky<br />
is falling!” Fortunately one of the whānau elders had<br />
witnessed such a phenomenon before and wisely<br />
announced “The sun has returned—we may all wear<br />
our sunglasses”. And there was great celebration<br />
and amazement.<br />
Truly though, the sun couldn’t have returned on a better<br />
day because this was a stage of two parts – Haast to<br />
Makarora and (after a bite to eat and a quick rest up)<br />
Makarora to Hawea. A total of 130km, climbing to a height<br />
of 1,178m … this day was not for the faint hearted. And<br />
bless them—Every. Single. One. Of our gorgeous team did<br />
Day Five—And the last day arrived—a fabulous Central<br />
Otago golden day … perfect for riding up a mountain.<br />
Yes—only 55 kms but up the Crown Range! The road was<br />
deceptively hilly to begin … and then there was no<br />
deception at all—it was straight up leg burning steep. All<br />
of our team got there though. Did some get a wee lift up<br />
over a couple of the worst bits? Yes. Did one throw herself<br />
off her bike in order to get a lift with the ambo guys? Also<br />
yes (she’s fine by the way—broken cheek and massive<br />
black eye, but fine and had a great time … it wasn’t really<br />
deliberate, a tyre blew out). Did a few reach the top, regain<br />
their breath, re-fuel and warm up, then bike back to<br />
encourage other team mates? Yes again. And was I the<br />
loudest, proudest Camp Mother as each one came over the<br />
summit and across the finish line? You bet I was!<br />
And then, as the united whānau this group of individuals<br />
had grown to be, they all hopped on their bikes again and<br />
rode down the other side to Arrowtown.<br />
Crazy.<br />
We joined with all the other riders and support crew for<br />
prizegiving and dinner at Queenstown’s Skyline<br />
Restaurant. Beers flowed as well as a few tears for our last<br />
night. Several of our whānau were in the top five<br />
places—woohoo! But that was never the main goal for this<br />
crew. They never, ever lost sight of the fact that they were<br />
raising funds to support positive futures for people with<br />
spinal cord impairments. They also knew, every day and<br />
every kilometre, that this was a ‘bucket list’ opportunity.<br />
Winners, every single one of them, in all the ways that<br />
truly matter.
NEW ZEALAND SPINAL TRUST 18<br />
And now I’m going to take the opportunity to thank some<br />
people: Honestly—I don't think I could meet a more<br />
awesome, committed, crazy and generous group of<br />
people: Bruce, Chris, Hans, Hayden, Jack, Karen, Ken,<br />
Lesley, Matt, Niki, Philly, Simon, Steph, Ted and<br />
Topher—I am the proudest Camp Mother. EVER!<br />
Andrew and Ian—absolutely couldn't have wrangled this<br />
motley crew without them ... I am grateful for their<br />
solutions-oriented thinking and ability to find humour in<br />
any given situation. (And the ‘Rolls Royce’ of bike trailers!)<br />
To our sponsors and partners in crime: Permobil New<br />
Zealand, ETCO—The Electrical Training Experts,<br />
Dynamic Controls and The Bike Shop ... thanks for<br />
manifesting your belief in our work in such a practical<br />
way with money, vehicles, fuel, gear, social media<br />
backing, support for staff on our team, enthusiasm and<br />
passion for the cause.<br />
There was lots of talk about this being the final ever TONZ<br />
as Pete and his crew had finally run out of puff after seven<br />
of them—and who could blame them? But just lately there<br />
have been whispers … maybe we’ll do it again after all?<br />
GOOD MINDS—The NZST team were solutions focused<br />
and had an ability to find humour in any situation.<br />
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SPINAL NETWORK NEWS 19<br />
Man on a Mission<br />
John Marrable has shown incredible fight to become a<br />
black belt in karate and help others with a disability.<br />
LOCAL LEGEND—John Marrable loves making a difference.<br />
John was on holiday in Scotland with his<br />
mother, father and older brother. They had<br />
been stuck in their caravan all day because of<br />
the rain and he was keen to get out that<br />
evening when the rain had finally stopped.<br />
John had no idea that a simple play activity<br />
of climbing a hill was about to change his<br />
future forever.<br />
Climbing the hill that day with his elder brother Mark,<br />
suddenly, the hillside gave way, sweeping John away with<br />
it. He tumbled, fell and fractured his back. His next<br />
recollection was of flying away in a Royal Air Force plane.<br />
While the flight for a young boy was quite the adventure,<br />
the outcome after landing was a nine-month stay in Stoke<br />
Mandeville Hospital in Aylesbury, England.<br />
This wasn’t anything he or his family had planned on. It<br />
was the late 1960’s and the world then was not as<br />
wheelchair friendly or sympathetic to the needs of<br />
disabled people as it is today.<br />
—Tina Morrell<br />
John had no idea that a simple<br />
play activity was about to<br />
change his future forever.<br />
John celebrated his 11th birthday in the hospital. After his<br />
discharge, he was treated in his community as a person<br />
with a intellectual disability, with people deliberately<br />
slowing their speech, or not acknowledging him at all.<br />
He was determined to show them he was just like them. He’d<br />
lost the use of his legs, not his brain or intellectual capacity.<br />
His brother Mark was a staunch ally, when they were in the<br />
street when people would ask him “How’s John?” Mark<br />
would turn to look at John and ask “How are you, John?”<br />
John would reply to Mark, and Mark would relay the<br />
response “My brother is feeling great, thank you for asking.”
NEW ZEALAND SPINAL TRUST 20<br />
—Tina Morrell<br />
John quickly discovered the<br />
people who saw no differences<br />
and they were the ones who<br />
became his friends.<br />
karate club leader said: “If you think you can do it then<br />
come along!” Up until then, he was busily begging for<br />
karate books and borrowing them. He would sit on the<br />
toilet reading them and practicing moves!<br />
Being the first person in a wheelchair to receive his black<br />
belt he comments “I don’t think gradings are any easier<br />
for me, some of my fellow karate colleagues are actually<br />
harder on me because I’m in a wheelchair.”<br />
Further adding “they hit harder and that is quite good because,<br />
on the street, people are going to be hard on us anyway.”<br />
FIGHTING SPIRIT – John Marrable helps people find their “Amazonian warrior”.<br />
Surprisingly for John’s parents, having to shift from their<br />
two-storied council house was not the only change they<br />
had to navigate. They also had the unexpected social<br />
losses of losing friends as a result of his disability. The<br />
loss of friends was more difficult to come to terms with, as<br />
John explains “because their friends didn’t know how to<br />
relate to them, suddenly they had a disabled child, how do<br />
we speak to them?”<br />
John quickly discovered the people who saw no<br />
differences and they were the ones who became his<br />
friends. Adaptability was something that John became<br />
adept at in a world that was not wheelchair accessible.<br />
Newly out of the hospital, John would use calipers and<br />
crutches to walk up their hallway and would inevitably<br />
fall over. John’s father would make light of it saying,<br />
“While you’re down there, John, do you just wanna touch<br />
up the skirting boards?”<br />
John’s parents were hugely instrumental in building<br />
John’s social and psychological capacities for facing the<br />
world, his mother would caution “you can’t go out looking<br />
like that, people will look at you strangely”. John’s father<br />
would counterbalance with “they’re going to look at you<br />
anyway John, go and give them something to look at!”<br />
It was John’s father, who fostered a curiosity in John for<br />
Asian martial arts. As an officer in the Royal Navy, he was<br />
well-versed in self-defence with his training. When the<br />
Kung Fu series started on television his father would<br />
encourage him—“Hey John, watch this!” John’s first<br />
attempts in the UK to join a karate club were<br />
unsuccessful.<br />
It was not until his family emigrated to New Zealand, and<br />
settled in Dunedin that he was invited to come along. The<br />
While he has celebrated the tremendous success of<br />
achieving a black belt, he describes with tears and a great<br />
sense of humility, feeling that it was a great honour.<br />
It was the first step on a progressive pathway with the<br />
Shodan discipline of degrees, with his latest achievement<br />
being the Shodan sixth degree! The achievement is highly<br />
prestigious, being six out of a possible 10 of which few<br />
people in the world ever achieve.<br />
The rewards for John and for those that he teaches, are<br />
many and varied and surpass just the benefits of physical<br />
fitness. John enjoys witnessing the journey first hand of<br />
the growth of confidence that people display by finding<br />
their inner strength.<br />
He encourages people to find their ‘switch’, transforming<br />
their stance from a shy, scared person and activating their<br />
inner “Amazonian warrior.”<br />
One day John was coaching and encouraging a woman to<br />
find her own inner “Amazonian warrior” as she was<br />
attacking the tackle bag with growing aggression. “That’s<br />
it, you’ve done it” he said, “you’ve found your inner<br />
warrior, now you need to learn how to dial it back”.<br />
Finding that inner discipline and self-control to turn that<br />
switch “on” and being able to self-regulate and turn “off”<br />
that switch is just as important.<br />
He has had his nose broken twice and been knocked out<br />
of his wheelchair. He explains that for the able-bodied the<br />
benefits of being able to use leg techniques and vary the<br />
load on their bodies helps them when practicing karate,<br />
whereas in a wheelchair he has to continue using his<br />
arms, sometimes for up to two – three hours.<br />
Despite his battle scars he finds it rewarding to see the<br />
people he coaches develop and grow in their confidence.<br />
Watching them transform from when he first meets them<br />
and leaving with a newfound confidence. “I love<br />
empowering people” says John.
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SPINAL NETWORK NEWS 21<br />
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NEW ZEALAND SPINAL TRUST 22<br />
A Lifetime of Helping Others<br />
We pay tribute to the life and service of Dr Richard Smail.<br />
FITTING TRIBUTE—Richard was presented with a well-deserved 'thank you' on his final retirement from<br />
the NZ Spinal Trust Board. Board member Noel Walton and our CEO Hans Wouters made the presentation.<br />
Dr Richard Smaill passed away on 31 May at<br />
his home in Christchurch surrounded by<br />
family and friends.<br />
The 64-year-old had a short stay in hospital. He was<br />
mostly lucid leading up to his final days and had many<br />
family, close friends and colleagues around him. Richard<br />
is survived by his wife Paulette and two adult children<br />
Tim and Jessica. He will be greatly missed.<br />
Richard was born in Balclutha the youngest child of five<br />
siblings to the late Charles (Charlie) and Gertrude (Trudi)<br />
Smaill. A funeral was held for Richard on 7 June with<br />
moving tributes from family and friends, he was well<br />
respected and very much loved.<br />
Friends that had known Richard for more than 50 years<br />
spoke of his friendship and support. Some of those friends<br />
went on to John McGlashan College boarding school in<br />
Dunedin. They vividly recounted Richard’s rugby accident<br />
at the age of 15 resulting in a spinal cord impairment (SCI).<br />
When he returned to boarding school following his<br />
accident, the boys used their ingenuity to help him navigate<br />
classrooms and school grounds. These were the days before<br />
ramps and other accessibility features were considered.<br />
Jess, Richard’s daughter, spoke of a loving father, and how<br />
she never saw the chair. Tim spoke about a dad who was<br />
honest. When they were young children, they would ride<br />
on the back of his wheelchair to kindergarten and<br />
primary school.<br />
“I knew I was in trouble”<br />
—Hans Wouters<br />
We mourn a great man<br />
whose work and legacy will<br />
live on for many years to<br />
come. Rest in peace Rich.<br />
Richard became a tetraplegic when he broke his neck in a<br />
rugby tackle. “Fortunately, or unfortunately, I used to be a<br />
pretty good rugby player,” Richard said remembering the<br />
day of his accident.<br />
“I was playing against some 17 and 18-year-olds. We were<br />
playing St Peter’s College from Gore. It was a head on<br />
tackle, and I slipped just as I was looking to tackle the<br />
chap. “He was one of those guys who lifted their knees<br />
very high when they ran. I slipped and stuffed it up, and<br />
my head hit his knee. I knew I was in trouble.”
SPINAL NETWORK NEWS 23<br />
—Dr Richard Smaill<br />
One thing is clear if you<br />
don’t look after yourself<br />
and your body then you<br />
are going to pay the price.<br />
He left the health services in 1993 to become<br />
self-employed establishing a business in career<br />
counselling as well as a variety of consultancy work.<br />
Further health issues set him back but he was fortunate to<br />
be granted a Health Research Council Disability Research<br />
Placement Award.<br />
Overcoming challenges to make a difference<br />
PERSPECTIVE—Dr Richard Smaill never looked at what he couldn’t<br />
achieve, he always focused on what was possible and set about living his life.<br />
That was 49 years ago. In 1974 New Zealand was a very<br />
different place for Kiwis living with a disability. Medical<br />
professionals were only just gaining the knowledge on<br />
how to keep high level tetraplegics alive.<br />
Never giving up<br />
Still, Richard did not complain. He never looked at what<br />
he couldn’t achieve, he always focused on what was<br />
possible and set about living his life.<br />
He went back to school to gain University Entrance, went<br />
on to study Psychology at University of Otago becoming a<br />
registered Psychologist in 1984. And in 2015, he completed<br />
his PhD at the University of Otago. Richard worked for<br />
many years in the health services in a variety of positions<br />
in research, planning and senior management.<br />
During this time, he completed a Diploma in Health<br />
Service Management and was also awarded a Winston<br />
Churchill Memorial Fellowship to study health<br />
information systems in Great Britain.<br />
“It was a huge opportunity, but it came at a terrible time,”<br />
remembered Richard.<br />
“It was back in the day when there weren’t emails or<br />
things like that. I used a fax machine to work out and plan<br />
my itinerary. The Health Reforms were starting to take<br />
place and I had a conversation with my Area Health Board<br />
boss who said if you want to go, you better go now as I<br />
can’t guarantee you will have a job in six months.<br />
“I remember getting communication when I was over in<br />
Britain which basically said all Third Tier Managers<br />
would be made redundant. In a funny sort of way, they<br />
did me a favour as I left and set up my own business<br />
doing career counselling and strategic planning for<br />
different organisations.”<br />
In 2000, Richard had an unexpected setback. Over Labour<br />
Weekend he lost about 35 percent of his movement<br />
overnight. He went back to hospital and then into the<br />
Spinal Unit and they couldn’t figure out what was wrong.<br />
“They worked out that where I had my original injury was<br />
still quite unstable and it had moved and caused more<br />
damage to my spinal cord,” he said.<br />
That illness inspired Richard to study again. His doctoral<br />
thesis ‘Ageing with a spinal cord injury in New Zealand’<br />
was completed in 2014 and was recognised by the<br />
Division of Health Sciences, University of Otago as being<br />
of exceptional quality.<br />
Richard said the question is often asked at what point is<br />
someone with a disability ageing or are they aged and<br />
disabled? When does it switch over?<br />
He says internationally there has been a massive amount<br />
of research in this space. Most of the research indicates<br />
that someone with a spinal cord impairment, if they look<br />
after themselves, can live a 90 – 95 percent lifespan of an<br />
able-bodied person. “That was certainly not well<br />
documented before. It is not saying that you are not going<br />
to have a variety of complications along the way,” he said.<br />
“One thing is clear if you don’t look after yourself and<br />
your body then you are going to pay the price. There is no<br />
in between there. In the end whether you are abled bodied<br />
or disabled we all end up in the same place. We all end up<br />
getting old and getting stuffed.”<br />
He also played a leading role in setting up the New<br />
Zealand Spinal Cord Impairment Registry (NZSCIR),<br />
which was hugely important work.<br />
“When I started my research, it became clear that no one<br />
in New Zealand actually knew how many SCIs there were<br />
in New Zealand,” he said.<br />
Richard realised there were several people who had<br />
passed away who were still on the registry. “It’s been a bit<br />
of a journey, but a number of people are working towards<br />
fixing it, which is great.”
NEW ZEALAND SPINAL TRUST 24<br />
Life is but a journey and<br />
you only have one shot at<br />
it, so you better give it a<br />
pretty damn good shot.<br />
Giving back<br />
—Dr Richard Smaill<br />
Richard has voluntarily been involved in a variety of<br />
charitable organisations at a governance level. He was a<br />
trustee and then Chair of the Board of Trustees for the St<br />
John of God Services (2001-2005), trustee and Chair of the<br />
New Zealand Spinal Trust for many years (2002-2020)<br />
trustee of Burwood Academy Trust for 10 years, and<br />
trustee on the Waimairi School Board (1998-2004).During<br />
his period as Chair of the NZST he was a mentor and friend<br />
to CEOs Andrew Hall and Ben Lucas. As board member of<br />
BAT, he provided support and advice to researchers.<br />
“We mourn a great man whose work and legacy will live<br />
on for many years to come. Rest in peace Rich,” says Hans<br />
Wouters, the NZ Spinal Trust CEO. “Richard leaves<br />
behind a lifetime of work where he helped others.”<br />
Around 2008 Richard, the then Chair of Board of<br />
Trustees, and Andrew Hall who was CEO, conceptualised<br />
an innovative service. It would see people with an SCI<br />
receiving assistance and support to return to the<br />
community by putting them in contact with other people<br />
with an SCI as well as following up on how well they were<br />
doing. It was also envisaged that those people who had<br />
lived with an SCI for many years could be contacted to see<br />
how they were going.<br />
This vision came to life. Last year a nationwide network of<br />
Peer and Whānau Support workers was created. It has been<br />
run by the NZ Spinal Trust and Spinal Support NZ in a<br />
two-year pilot funded by ACC, and been hugely successful.<br />
Richard’s philosophy on living with an SCI.<br />
“Life is but a journey and you only have one shot at it, so<br />
you better give it a pretty damn good shot. You need to<br />
make the most of every day. It gets harder as you get older.<br />
I am coming up to 62 [at the time of talking to him] and I<br />
am finding that it’s not my biological age, it is my age<br />
since the injury.<br />
Hamish Ramsden’s tribute<br />
to his good mate.<br />
When did I meet him? Hell I can’t remember when,<br />
He had a presence about him a certain Zen,<br />
Although he wasn’t one to worry about that,<br />
He didn’t have to pretend.<br />
His knowledge and wisdom could not be surpassed,<br />
He would happily offer it when he was asked,<br />
This didn’t mean that he would hold back and not a<br />
comment make,<br />
There was no chance of him being called a fake,<br />
He had his accident many years ago,<br />
But that did not mean he put his life on slow,<br />
He went back to school a teenage boy at the time,<br />
The effort to do this would have been prime,<br />
Years passed and he married Paulette a joy to behold,<br />
Then Tim and Jess were to join the fold,<br />
A family unit with one to explore,<br />
A house in Wanaka let them do it some more,<br />
Working hard and involved in the health sector,<br />
A PhD was to entice him more work don’t you fear,<br />
A doctor he became would he study any more?<br />
Hell no he said on those resources he would not again<br />
have to call<br />
In the latter years a regular lunch we would take,<br />
He was always there that appointment he would<br />
not forsake,<br />
Sometimes grumpy, sometimes happy as well,<br />
But it was important to him for us friends all to gel,<br />
His drive his determination always looking to do good,<br />
He had it in spades you didn’t have to look for it under<br />
the hood,<br />
So when did I meet him that answer I will have to sever,<br />
As with good friends you feel like you have known<br />
them for ever.<br />
The research shows that time since your injury has more<br />
of an impact than your biological age because you are<br />
sitting down, your bones aren’t as strong, you are more<br />
prone to arthritis, more prone to obesity which leads to<br />
cardiovascular problems and respiratory problems.<br />
All of that is a result of the fact you can’t physically<br />
exercise in the same way. But you can live a full life—it is<br />
all up to you.”<br />
GOOD MATES—Dr Richard Smaill leaves behind<br />
a lifetime of work where he helped others.
SPINAL NETWORK NEWS 25<br />
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NEW ZEALAND SPINAL TRUST 26<br />
Ageing Healthily with an SCI<br />
We all feel the effects of time and getting older but how does ageing<br />
impact someone with a spinal cord impairment?<br />
TIME TO REFLECT—Ageing is hard for<br />
everyone, even more so with an SCI.<br />
It is difficult to think about getting old, when<br />
you are still young. The concept is clear, but<br />
until you start to slowly experience the<br />
changes which come with age, it is too hard<br />
to imagine.<br />
Mix in a spinal cord impairment and the consequences of<br />
ageing can be problematic and challenging. You have<br />
already worked incredibly hard to overcome the<br />
challenges you faced with an SCI, and found ways to live<br />
your best life.<br />
You may have raised a family, had a meaningful<br />
vocational role and enjoyed participating in sports, but<br />
now, with ageing, your body is letting you down, again.<br />
How do you face that change? What advice would you<br />
offer to a younger person with an SCI? What would you<br />
have done differently?<br />
To answer some of these questions we talked to Phil<br />
Melrose, founder of Melrose Kiwi Concept Chairs, sports<br />
enthusiast and experiencing the effects of ageing.<br />
Phil sustained his T9 spinal injury on 27th January 1991.<br />
He was off shore power boat racing when the accident<br />
happened. “I thought you just sit in a wheelchair and can’t<br />
move your legs. Well, I was wrong about that,” he says.<br />
“I was lucky to have the best team of nurses and doctors and<br />
people around me. And when I was doing my rehab, playing<br />
basketball, I met a guy from the West Coast … and the rest is<br />
history. We would be swimming, doing yoga, tennis,<br />
basketball, lifting weights and playing table tennis.”<br />
Surround yourself with<br />
people who see you for<br />
who you are.<br />
—Phil Melrose<br />
Phil describes his accomplishments in those early years:<br />
“I used to take the ‘newbies’ up town and show them life<br />
doesn’t change. I learned as much from them as they<br />
learned from me.<br />
“Sports were important, I loved playing tennis and met a<br />
lot of cool friends. I went back to racing speedway for a<br />
few years (and) really enjoyed that. I asked a mate to build<br />
me some frames out of titanium, but after a while he was<br />
too busy building microlite planes. I’d met Mike a few<br />
years before my accident, racing in Te Awamutu.”<br />
Phil decided to build a wheelchair for himself out of<br />
titanium. This was so successful he gradually had more<br />
built as he sold them to friends and acquaintances. His<br />
small part time garage interest has grown to a business<br />
that designs and fabricates custom wheelchairs and<br />
sports chairs as well as other mobility products and<br />
employs around 50 people in NZ and California.<br />
Phil credits his success as a parent in those early years to<br />
Annette and reported that his young daughters adapted<br />
to his mobility needs early on. Having meaningful
SPINAL NETWORK NEWS 27<br />
relationships, occupations and accomplishments played<br />
an important part in defining Phil’s place in the world.<br />
In recent years Phil has noticed the following changes in his<br />
day-to-day routines and abilities: “Everything takes longer!<br />
I have to think first before I transfer or do an activity<br />
because seemingly minor problems can be so much harder<br />
to overcome now.” It’s harder to maintain fitness and health<br />
with issues that could previously be tolerated.<br />
For example, Phil explains that the combination of an<br />
insidious increase in neuropathic pain, sleep apnoea and<br />
shoulder injury limitations now affects his sleep. “Some<br />
days are better than others, depends on life”—stress,<br />
mood, well-being, and life events, can “sometimes get on<br />
top of you.”<br />
Phil reports that health issues and weight gain have been<br />
challenging factors. His ability to engage in sports and<br />
exercise has gradually decreased with age and injury and as<br />
a result his health and weight has been harder to manage.<br />
He recounts how a major surgery that went wrong,<br />
coupled with a shoulder injury impacted on his ability to<br />
carry out direct lift transfers, resulting in development of<br />
a shear related injury a couple of years ago. “I was lucky I<br />
noticed there was a difference and had my mirror. If I<br />
hadn’t checked and gotten help from my nurse it could<br />
have been so much worse.”<br />
The most frustrating and debilitating changes that Phil<br />
has experienced, and which impact on his ability to get on<br />
with daily life are: “Without a doubt, the most frustrating<br />
and debilitating aspect of ageing with a spinal cord injury<br />
is coping with a shoulder injury because it can affect<br />
everything from transfers, propelling the wheelchair to<br />
lifting heavy pots on the stove.”<br />
Maintaining a regular exercise routine can be challenging<br />
and Phil admits he struggles with motivation. “If I had a<br />
personal trainer to encourage me every day, I know I<br />
would be much fitter and healthier” His advice is to find<br />
activities you enjoy doing, or something to help distract<br />
you while you do exercise and to establish a regular<br />
routine if you can. Contact your local authority or<br />
ParaFed organisation, they will often have opportunities<br />
for adaptive sport and exercise.<br />
In Christchurch ParaFed have a Functional and Adaptive<br />
Movement (FAM) programme on Sunday mornings. It’s a<br />
great place to meet with friends and exercises are<br />
designed around individual needs.<br />
Phil utilises the following strategies to assist him to<br />
counter the challenges of ageing: Surround yourself with<br />
people who see you for who you are.<br />
Be willing to ask for help, “sometimes it is a struggle to let<br />
others help”, you’ve worked hard over the years to prove<br />
you can do things, and it is hard to let others help with<br />
those tasks you were managing to do yourself.<br />
Check your skin regularly—“I’m more aware of my skin<br />
now.” Phil reports he doesn’t want to miss out on life<br />
through having to be on bed rest, “When I was younger, I<br />
took it (skin integrity) for granted and didn’t think twice if<br />
I carried out poor transfers. Now I’m more careful.<br />
ADJUSTING TO CHANGE—Phil credits his success as a parent<br />
in those early years to Annette and reported that his young<br />
daughters adapted to his mobility needs early on<br />
Phil offers the following advice on promoting health<br />
maintenance… Accept the offer of colostomy as early as it<br />
is offered—“Manual bowel routines took up so much of<br />
my life and stopped me from doing things because of the<br />
fear of having an accident.”<br />
“Preserve your shoulders if you can!” Ask your therapist<br />
for individualised shoulder exercises. “Keep doing things<br />
that you enjoy and make life worth living”. Phil loves to<br />
cook. He makes lots of food in one sitting and enjoys<br />
sharing these meals with some of his elderly neighbours.<br />
“I just need help to lift the heavy pots out of the oven.”<br />
“I’m lucky in that I live in an area where most things are<br />
within pushing distance, but I have a ZX1 power assist<br />
that I use when my shoulder is painful or I know I’m going<br />
further afield.”<br />
Phil attributes a positive attitude, social contacts and<br />
doing things which are important to him to give his life<br />
meaning and promote his wellbeing. “Don’t let a spinal<br />
injury stop you from living! Being busy, getting a job and<br />
doing things that you enjoy and spending time with<br />
likeminded people are a great distraction and give your<br />
life purpose and focus.”<br />
Phil advises that he feels lucky that he was surrounded by<br />
family and friends within the SCI community who helped<br />
him to live his best life, encouraged him when he needed<br />
encouragement and shared in his successes. “Life’s about<br />
helping people and caring for more than just yourself!”<br />
You can look up the FAM Exercise group through ParaFed<br />
Canterbury - FAM or email Charlotte Pawson, Junior<br />
Sports Manager for more information:<br />
cpawson@parafedcanterbury.co.nz<br />
Apply for a Hāpai Access card: hapaiaccesscard.org.nz<br />
As well as getting a better customer experience from<br />
participating businesses there is the opportunity to save<br />
on entrance fees, and tickets, hot drinks, equipment hire<br />
and free entry and tickets for an essential companion.<br />
Costs $30 for three years.
NEW ZEALAND SPINAL TRUST 28<br />
Gone Too Soon<br />
We look back on the life and achievements of Alan Pullar.<br />
MILESTONE—Alan Pullar<br />
celebrating his 21st birthday.<br />
In 2017, the <strong>SNN</strong> published an article on Alan<br />
Pullar. Alan was a firm believer that you<br />
make your own luck in life, his was a life well<br />
lived. He was the oldest surviving person<br />
with a spinal cord impairment (SCI) in<br />
New Zealand, having spent 57 years in a<br />
wheelchair. Sadly, Alan passed away after a<br />
short illness in April at the age of 77.<br />
In 1966, he sustained his SCI following a rugby accident<br />
when he was 20 years old. Alan’s injury occurred long<br />
before ACC was established, however the Waimate<br />
community rallied around him and raised enough money<br />
to help with his return home following his rehabilitation<br />
in ward 13C. While in 13C he passed his final exams and<br />
became a qualified plumber.<br />
While in the spinal unit, Alan met the late Graham Tapper<br />
and was impressed with Graham’s car and the home made<br />
hand controls. Alan had to sell his beloved Riley, but when<br />
the Waimate Rugby Club offered him fundraising money,<br />
he bought a Ford Cortina automatic and had hand controls<br />
fitted. He also designed a hoist that he could use to get his<br />
Alan’s injury occurred<br />
long before ACC was<br />
established, however the<br />
Waimate community<br />
rallied around him.<br />
wheelchair in and out of his car. Alan’s father knew a local<br />
engineer who made the hoist for him.<br />
The car gave him independence and enabled him to move<br />
to Canterbury university to study law. However, studying<br />
at the university was problematic, this was in the days<br />
before campuses were accessible with ramps, lifts and so<br />
on. Alan asked the Dean for a dispensation to sit his final<br />
exams but was refused, consequently he was unable to<br />
finish his course. Instead, he left university and enrolled<br />
for a diploma in business administration at Christchurch
SPINAL NETWORK NEWS 29<br />
Polytechnic now called Ara Institute of Technology. It was<br />
around this time that Alan met Barbra his future wife.<br />
They hit it off immediately, but Alan was worried about<br />
the impact an SCI would have on their life together. While<br />
Alan was studying, Barbra worked as a nurse which<br />
enabled them to save enough money to build their first<br />
house. Alan and Barbra got married in July 1971.<br />
Nine years after his SCI in 1975, Alan and Barbra went on<br />
their big OE where they lived in London for four years and<br />
travelled throughout Europe in a campervan, a<br />
Volkswagen automatic with hand controls. They travelled<br />
through Germany, Sweden, Denmark, Greece and Austria,<br />
despite accessibility issues nothing was a problem and<br />
they worked around any challenges that arose.<br />
On returning home to Christchurch, Alan worked with<br />
friends who owned a construction business. Sometime<br />
later Alan started his own business hiring out shipping<br />
containers to be used for storage. It was a very successful<br />
business which grew exponentially throughout<br />
Christchurch. In April 1983 and December 1984 Jessica<br />
and Emilie were born making the family complete. By the<br />
time the girls had started primary school Alan had set up<br />
an office at the back of the garage so that there was always<br />
a parent at home.<br />
In 1992, Alan had an operation on his neck to relieve a<br />
cyst that was forming - which proved worse than his<br />
original injury. It made him not a complete quadriplegic<br />
but close enough to it. In Alan’s words “I wasn’t<br />
independent anymore which was hard to take…”<br />
Through all the adversity that he faced Alan wasn’t one to<br />
give up, he always found a solution to any problems that<br />
arose and he took huge pride in his family and what he<br />
had achieved.<br />
“I was never frightened to be seen in public in my<br />
wheelchair and that is something that people in<br />
wheelchairs have to get over. I don’t care where I go. It has<br />
never worried me. I have always wanted to get on with my<br />
life and that has always been my attitude”.<br />
Book Review:<br />
My Story<br />
by Alan Pullar<br />
—Alan Pullar<br />
I was never frightened to<br />
be seen in public in my<br />
wheelchair and that is<br />
something that people in<br />
wheelchairs have to get over.<br />
‘My Story’ tells the<br />
remarkable life of Alan<br />
Pullar who was the<br />
oldest surviving person<br />
with an SCI in New<br />
Zealand. Alan wrote his<br />
autobiography in 2022,<br />
before he died in April<br />
<strong>2023</strong> after a short<br />
illness. He had a<br />
wonderful philosophy<br />
on life, “From the day of my injury I said to myself, ‘don't<br />
look back, otherwise I will not go forward’.<br />
While playing in a rugby scrum for the Waimate Rugby<br />
club in June 1966 he sustained an SCI. In his book he<br />
describes how his life flashed before his eyes and that he<br />
had made peace with himself before he was taken to<br />
Timaru hospital. Little was known about spinal cord<br />
injuries in those days, but Alan did reflect on what the<br />
outcome would have been if he had immediately been<br />
flown to Christchurch hospital for treatment. He stayed in<br />
the newly established Spinal unit, Ward 13C for 10 months.<br />
Eventually in October 1966 Alan left the Spinal Unit to<br />
return home to a new life. Ward 13C became Ward 13B and<br />
was then relocated to a standalone centre at Burwood<br />
Hospital in 1971.<br />
In the 1980’s the New Zealand Rugby Foundation was<br />
founded ensuring that every person seriously injured in<br />
rugby would be supported for life and considered a VIP—<br />
or very injured person. Alan was VIP number one, there<br />
are currently 99 VIPs.<br />
At the end of his memoir Jessica and Emilie wrote an<br />
afterword describing their dad as a great role model and<br />
the big part he played in their lives.<br />
FAMILY—Alan with his daughter Jess and grand-daughters.
NEW ZEALAND SPINAL TRUST 30<br />
What’s new in the<br />
Resource Centre<br />
<strong>August</strong> <strong>2023</strong><br />
Unwell women: a journey through<br />
medicine and myth in a man-made<br />
world by Elinor Cleghorn, 2022<br />
Unwell Women: A Journey Through<br />
Medicine and Myth in a Man-Made<br />
World is a 2021 non-fiction book by<br />
Elinor Cleghorn. Cleghorn provides<br />
a cultural history of the impacts of<br />
misogyny on western medicine and<br />
western medical practice.<br />
Packed with character studies of<br />
women who have suffered,<br />
challenged and rewritten medical<br />
orthodoxy—and drawing on her own<br />
experience of un-diagnosed Lupus<br />
disease—this is a ground-breaking<br />
and timely exposé of the medical<br />
world and women's place within it.<br />
Neurotrauma: a comprehensive<br />
textbook on traumatic brain<br />
injury and spinal cord injury<br />
edited by Kevin K. W. Wang, 2019<br />
Neurotrauma is a comprehensive<br />
textbook on traumatic brain injury<br />
and spinal cord injury which aims to<br />
bring together the latest clinical<br />
practice and research in the field of<br />
traumatic brain injury (TBI) and spinal<br />
cord injury (SCI). This volume details<br />
the latest research and clinical practice<br />
in the treatment of neurotrauma, in a<br />
comprehensive but easy-to-follow<br />
format. Neurotrauma is a valuable<br />
resource for any clinician involved in<br />
caring for TBI and SCI patients,<br />
clinical research professionals,<br />
researchers and nurse specialists.<br />
The myth of normal: trauma,<br />
illness, and healing in a toxic<br />
culture by Gabor Mate with Daniel<br />
Mate, 2022<br />
Over four decades of clinical<br />
experience, Dr Mate has found that<br />
the common definition of 'normal' is<br />
false- virtually all disease is a natural<br />
reflection of life in an abnormal<br />
culture, as we grow further and<br />
further apart from our true selves. He<br />
also shows us the pathway to<br />
reconnection and healing. Filled<br />
with stories of people in the grip of<br />
illness or in the triumphant wake of<br />
recovery, this life-affirming book<br />
shows how true health is possible.<br />
The Girl Who Fell from the Sky:<br />
an extraordinary true story of<br />
resilience, courage, hope and<br />
finding lightness after the heaviest<br />
of landings Emma Carey, 2022<br />
When Emma Carey was twenty, she<br />
fell from 14,000 feet and survived.<br />
Emma tells her inspirational story of<br />
how, she found her truest self. Emma<br />
teaches us the importance of courage<br />
and resilience. This heartfelt book is<br />
more than a memoir, it's a call to<br />
action that reminds us not to take<br />
our lives and abilities for granted—to<br />
live every day like it could be our last.<br />
Just one thing: how simple<br />
changes can transform your life<br />
by Dr Michael Mosley, <strong>2023</strong><br />
Based on the popular BBC<br />
programme Just One Thing, Dr<br />
Michael Mosley shows how changing<br />
one small thing in your daily routine<br />
can significantly benefit your health.<br />
Learn how standing on one leg can<br />
have huge health benefits, a hot<br />
shower before bed can help lower<br />
your blood pressure, and eating<br />
chocolate is good for your heart.<br />
These simple things might surprise<br />
you—but they really can work.
SPINAL NETWORK NEWS 31<br />
Journals/magazines<br />
Dynamics of Human Health<br />
Vol 10 issue 1 <strong>2023</strong><br />
Forward UK SCI:<br />
Fundraising Challenge<br />
<strong>Issue</strong> 171 Summer <strong>2023</strong><br />
New Mobility<br />
<strong>Issue</strong> 346 Jan/Feb <strong>2023</strong><br />
Spinal Network News<br />
Vol 26 no. 1 April <strong>2023</strong><br />
Topics in Spinal Cord injury<br />
Rehabilitation<br />
Vol 29 no. 2 Spring <strong>2023</strong><br />
Check out our catalogue!<br />
Visit the Resource Centre catalogue<br />
abc.mykoha.co.nz<br />
All of the listed items are available<br />
to loan from the Resource Centre.<br />
We are located on the way to the<br />
spinal gym, call in and see us!<br />
Contact Bernadette Cassidy for<br />
more information<br />
bernadette.cassidy@nzspinaltrust.org.nz<br />
or phone: 022 600 6630<br />
Go further, do more with<br />
a Freedom Mobility hire<br />
With the largest mobility rental fleet in NZ, and 24/7 nationwide roadside<br />
assistance, Freedom Mobility gives you that holiday feeling from the moment<br />
you turn the key. Our personalised service means you get the perfect vehicle<br />
for your needs, and a perfect experience every time.<br />
So get in touch and we’ll get you on the road.<br />
freedommobility.co.nz<br />
0800 864 2529
NEW ZEALAND SPINAL TRUST 32<br />
Buying a Car<br />
Hamish Ramsden is back with another informative and engaging<br />
column. This is his take on getting a car sorted with ACC.<br />
—Hamish Ramsden<br />
It takes a lot of energy to object<br />
to a decision... but I decided to<br />
go through with the process.<br />
WELCOME—Hamish Ramsden has recently<br />
joined the NZ Spinal Trust Peer Support team.<br />
Published author Hamish Ramsden is a<br />
regular columnist for the Spinal Network<br />
News. He has a unique take on life and a very<br />
dry sense of humour.<br />
How long does it take to get a new car? Well in my case<br />
about six and half years. Let me tell you the story.<br />
Having had an accident with the resulting C5/6<br />
tetraplegia I am fully behind (obviously) the whole ACC<br />
system which caters for funding for my injury related<br />
needs. It has helped me maintain a lifestyle that is<br />
proactive and interesting, motivating me to get out of bed<br />
each day. So, what about the car?<br />
Just over 20 years ago I applied for funding for a modified<br />
car, a Kia Carnival, which was basically a people mover<br />
with a lowered floor. I don’t have enough strength to drive<br />
but just sitting in the passenger seat would be sufficient.<br />
Fortunately, having been declined funding I was in the<br />
position to add the cost of the car to my mortgage and so<br />
self-funded my car. It really was worthwhile doing as it<br />
opened up a whole lot of opportunities for me and helped<br />
avoid taking taxis unless really necessary.<br />
So about six years ago with the old Kia, the Turtle as I<br />
called her, (as it really was like winding up or winding<br />
down a tank each day, but why “her”?) I applied for<br />
funding for a new vehicle.<br />
The process was thorough, but unfortunately, I was not<br />
successful as ACC decided that the Turtle still had a few<br />
years left in her yet. So, I waited a couple more years and<br />
with the maintenance bill steadily rising I applied for<br />
another vehicle.<br />
Again, the process was very thorough, with the final<br />
verdict being that ACC would fund me a Mercedes van.<br />
Good news on the face of it but it would barely fit down my<br />
drive, certainly wouldn’t fit in my garage, or any of the car<br />
parks that I frequented and was basically a commercial<br />
vehicle being suggested for a residential situation.<br />
It takes a lot of energy to object to a decision, including<br />
the possibility of mediation, but I decided to go through<br />
with the process. In my mind, the other more realistic<br />
option, was to obtain funding for a VW Caravelle.<br />
Again, another type of people mover with the floor<br />
lowered. It would have to come from overseas as at that<br />
stage there were no companies in New Zealand altering<br />
cars like this. This wasn’t a problem to me but would delay<br />
the process and obviously increase costs.<br />
I got to the stage where I prepared for mediation whilst<br />
ACC had their law firm set up to object and argue their<br />
side of the case. I didn’t want to get into a tit-for-tat<br />
argument and thankfully after researching a lot of<br />
information, thoroughly arguing my case, along with a<br />
little outside help, I managed to get the decision<br />
overturned and funding approved for a Caravelle. Then<br />
everything was all set to order the vehicle. Although a<br />
number of years after my second application.<br />
Thanks to COVID-19 and production and supply delays, it<br />
took another year for the vehicle to arrive, but the<br />
problems did not finish there. The car arrived in<br />
Christchurch, but the electric doors didn’t work. This<br />
situation took some time to be resolved and I am now<br />
fully operational.<br />
So, what are the take-home messages from this and why<br />
have I told you of my experience?<br />
I guess the point is, if your claim is injury related then<br />
don’t always take no, or the first option offered, for an<br />
answer. If you have the ability and the desire to do further<br />
research and argue your case, it can be very worthwhile.<br />
There may be help and funding available for this as well.<br />
Ask ACC, they’d love to put you on the right path!<br />
Now what do I call my new car? Mr…
SPINAL NETWORK NEWS 33<br />
Making a Difference<br />
Milner Mobility have a history of helping New Zealanders.<br />
HAPPY TEAM—Darren Milner and Katie Milner are proud to run a great company.<br />
Darren Milner has practically grown up in<br />
the automotive industry—his Dad Rod<br />
started Rod Milner Motors over 40 years ago,<br />
and 30-odd years ago started importing<br />
adapted vehicles.<br />
It’s always been personal for the Milner family—when<br />
Rod’s wife Lee needed to use a wheelchair, they learned<br />
first hand of the difficulties in buying a suitable vehicle<br />
With a move to an impressive new premises in Mount<br />
Wellington, Rod and his son Darren decided to change the<br />
name to Milner Mobility to better reflect what they offer<br />
and help take a bold step toward the future.<br />
Darren says “We wanted to have everything on show and<br />
available without accessibility issues getting in the way.<br />
We’ve got everything indoors so the weather’s not an<br />
issue; everything’s on one level; the doors are automatic;<br />
there’s multiple accessible toilets; and there’s enough<br />
room for chairs of all types to move freely around the cars<br />
on display. It was really important to us to provide a<br />
‘normal’ car sales experience.”<br />
—Su Marshall<br />
Their personal commitment<br />
to providing a quality service<br />
is what gets them up each day.<br />
In the showroom are vehicles in a variety of styles and<br />
sizes with various ramp, hoist and swing out seat options.<br />
There are new and pre-owned, and vehicles perfect for<br />
private or commercial use. So there’s plenty available to<br />
check out a variety of options, find possible solutions that<br />
will work best for the individual … do a bit of “tyre<br />
kicking”. Take away ideas to discuss with Occupational<br />
Therapists (OTs) that they’ve been able to try out in real<br />
life. Darren accompanied by his wife Katie (who looks<br />
after all things Marketing in the business) try to head<br />
overseas once per year to ensure they’re bringing in the<br />
most practical, cost-effective range of specialist new<br />
vehicles to give people choices that didn’t exist when<br />
Darren’s Mum needed a wheelchair-friendly car.
NEW ZEALAND SPINAL TRUST 34<br />
In addition to sales, they do adaptions on-site including<br />
hand controls and left foot accelerators, plus chair lifts,<br />
winches, etc. They also have a service bay and run a<br />
rental vehicle service across several centres across the<br />
country, working closely with ACC, OTs, funders and<br />
clients to help achieve a win-win for everyone.<br />
It’s a lot to be doing but their personal commitment to<br />
providing a quality service is what gets them up each day.<br />
“We’ve heard horror stories of people waiting for<br />
months—years even—to have a vehicle adapted, and then<br />
they finally get the car and it’s just not what they’d have<br />
chosen for themselves. Why should the buying experience<br />
be so different for someone because they’re using a chair?<br />
I get to go to a showroom and look at my options, take<br />
them out for a test drive, compare the pros and cons …<br />
we want to provide that same level of opportunity and<br />
service for wheelchair users. And just as I might try out a<br />
vehicle at one sales yard but eventually buy from another,<br />
we understand not everyone’s going to be able to buy from<br />
us … but we’re committed to ensuring they have the same<br />
opportunities as able-bodied folk to see what their<br />
options are.”<br />
HISTORY—Rod Milner imported his first wheelchair accessible vehicle<br />
almost 30 years ago to give his wife and family more independence.<br />
What you do is your history.<br />
What you set in motion is your legacy.<br />
A spinal cord impairment—whether it happens through injury or<br />
illness—can be a sudden life changing event. It can feel as though your<br />
life has stopped. It can be challenging, confronting, daunting, scary.<br />
It can also be the start of a new, positive, unexpected and fulfilling<br />
life journey.<br />
A decision to include a gift in your Will for the work of the NZ Spinal<br />
Trust supports people across Aotearoa NZ as they learn to embrace<br />
a positive future with spinal cord impairment.<br />
If you are considering writing or amending your Will and would like<br />
an information brochure on how to include NZST, please email<br />
Su Marshall (su.marshall@nzspinaltrust.org.nz).<br />
If you would like to chat about who we are and who a bequest<br />
would support, please contact Hans Wouters, CEO<br />
(hans.wouters@nzspinaltrust.org.nz) or phone 03 383 6881<br />
www.nzspinaltrust.org.nz<br />
Te Tarahiti Manaaki Tuanui<br />
“Having the Trust there to help navigate those first<br />
few weeks or even the first few months was just<br />
incredible, because it’s extremely overwhelming.”
SPINAL NETWORK NEWS 35<br />
Thank You to Our<br />
Funders & Sponsors<br />
The New Zealand Spinal Trust appreciates the generous support of the following<br />
funders. Without their kind support, the Trust would not be able to deliver the<br />
variety of services to assist clients to live independent lives right now.<br />
Permobil is a global leader with over 50 years experience in providing advanced<br />
medical technology and state-of-the-art healthcare solutions. Today, those<br />
solutions include the sale and rental of power wheel chairs, manual wheelchairs,<br />
power assist and seating & positioning products.<br />
Access Community Health has been at the forefront of keeping people healthy<br />
and safe in their homes since 1927. Today our nationwide team of skilled nurses<br />
and 3,000 support workers make over three million visits per year, ensuring<br />
people can remain active and independent in their own homes and community.<br />
Able Axcess are the leading suppliers of aluminium mobility ramps for<br />
residential and commercial disability access. We also manufacture rubber<br />
threshold ramps and level shower inserts, at our factory in Feilding.<br />
Milner Mobility is a family owned and operated business. Our vision is to give<br />
people independence and assist as many families as possible into mobility<br />
vehicles. With expert knowledge and support, we can assist you in your<br />
adaption, service, sales or rental requirements.<br />
Avonhead<br />
Rotary<br />
Rehabilitation<br />
Welfare Trust<br />
The Elizabeth Ball<br />
Charitable Trust<br />
Burwood<br />
Volunteers Trust<br />
Deluxe Box<br />
Riccarton Rotary<br />
Charitable Trust<br />
Crusaders<br />
Canterbury Masonic<br />
Charitable Trust<br />
Cube Design<br />
The Palms Shopping Centre<br />
A F W and J M Jones<br />
Foundation<br />
Fresh Choice Parklands<br />
Rotary Club<br />
of Christchurch<br />
Hyman Marks<br />
Charitable Trust<br />
JBS Dudding Trust<br />
Are you a subscriber?<br />
It’s easy to subscribe to the NZST and it only costs $30 a year. Your subscription<br />
helps with the printing of the Spinal Network News magazine and helps us<br />
support the positive futures of people with spinal cord impairment.<br />
Go to our <strong>web</strong>site and click<br />
on the red ‘Donate’ button<br />
www.nzst.org.nz
Alan has the freedom<br />
to say yes when he<br />
wants to go camping<br />
VaPro TM<br />
catheters give you the freedom to catheterise where you want.<br />
Choose a catheter that’s 100% No Touch Protected, easy to use, and discreet.<br />
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Life with VaPro Catheters<br />
Scan the QR code to view Lee’s<br />
experience with VaPro Pocket<br />
catheters or visit:<br />
bit.ly/LifeWithVPNZ<br />
Lee from NZ,<br />
VaPro catheter user.<br />
Size Length Code Box QTY<br />
10Fr 40cm 71104 30<br />
12Fr 40cm 71124 30<br />
14Fr 40cm 71144 30<br />
16Fr 40cm 71164 30<br />
To request samples, please contact:<br />
0800 678 669 or<br />
email NZCustomerservice@libmed.co.nz<br />
Code: VPP<strong>SNN</strong><br />
Prior to use of VaPro catheters, be sure to read the Instructions for Use for information<br />
regarding Intended Use, Contraindications, Warnings, Precautions, and Instructions.<br />
Hollister, the Hollister logo, VaPro and VaPro Plus Pocket are trademarks of Hollister Incorporated.<br />
©<strong>2023</strong> Hollister Incorporated. AU-00168 AUHC336<strong>SNN</strong>. July <strong>2023</strong>