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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 />

Jess Vallance<br />

Su Marshall<br />

Hans Wouters<br />

Bernadette Cassidy<br />

THANKS TO THE FOLLOWING<br />

FOR IMAGES IN THIS MAGAZINE<br />

Hans Wouters<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 />

Fadiel<br />

NETWORK NEWS<br />

New Zealand<br />

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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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 website and click<br />

on the red ‘Donate’ button<br />

www.nzst.org.nz


Alan has the freedom<br />

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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>

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