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<strong>April</strong> <strong>2021</strong><br />

Volume 24 / <strong>Issue</strong> 1<br />

<strong>SNN</strong>Spinal Network News<br />

TEINA BOYD “THAT<br />

BLOODY QUESTION…”<br />

BROOK MACDONALD<br />

ON NEVER GIVING UP<br />

WE CELEBRATE<br />

THE ATTITUDE<br />

AWARDS WINNERS<br />

“He Whetu<br />

Arahi”<br />

(“A Guiding Star”)<br />

Harper Heta’s<br />

inspirational story


NEW ZEALAND SPINAL TRUST 2<br />

Contents<br />

3<br />

5<br />

7<br />

10<br />

14<br />

16<br />

Redeeming your Time<br />

Editorial<br />

<strong>2021</strong> Supporting Positive Futures<br />

Hans Wouters—CEO NZ Spinal Trust<br />

Autonomic Dysreflexia<br />

What is it and what to do when it happens<br />

A Role Model at 12<br />

The incredible recovery of Harper Heta<br />

Qigong<br />

Developing your mental skills<br />

An Ideas Man<br />

Mike Brown talks about the LapStacker<br />

19<br />

23<br />

27<br />

29<br />

30<br />

32<br />

Advice for People New to SCI<br />

18 33<br />

Got Wings<br />

Brook Macdonald is flying again<br />

All is For All<br />

The media agency making a difference<br />

Teina Boyd<br />

That bloody question….<br />

What We're Watching—Crip Camp<br />

A disability revolution<br />

Library<br />

New additions<br />

Running for Those Who Can't<br />

Red Bull’s Wings for Life World Run<br />

Burwood Academy of<br />

Independent Living Update<br />

EDITORIAL TEAM<br />

Peter Thornton<br />

Hi my name is Peter Thornton, I am so proud to be the<br />

editor of this great magazine. I believe it is a publication<br />

that has the power to change lives.<br />

Bernadette Cassidy<br />

Kia ora, my name is Bernadette Cassidy. I am<br />

delighted to be on the Spinal Network News team.<br />

I hope you enjoy the first issue for <strong>2021</strong>!<br />

CONTRIBUTING WRITERS<br />

Peter Thornton<br />

Dr Bernadette Cassidy<br />

Teina Boyd<br />

Su Marshall<br />

THANKS FOR THE IMAGES<br />

Shane Boulton (ACC)<br />

Teina Boyd<br />

Attitude Awards<br />

Patrons of the New<br />

Zealand Spinal Trust,<br />

Sir Tim Wallis (left) and<br />

Trevor Harrison (right).<br />

Mike Brown<br />

Hans Wouters<br />

Lucy Wilkins<br />

Mike Brown<br />

Red Bull<br />

All is for All<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: Jackie Grimshaw and<br />

Bernadette Cassidy<br />

Cover Photo: Harper Heta in Kapa<br />

Haka gear—credit Shane Boulton<br />

(ACC)<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 />

Redeeming<br />

Your Time<br />

Peter Thornton<br />

Editorial<br />

On her way. Charlie’s first day at Cashmere Avenue Primary School.<br />

It was a moment filled with pride and also<br />

tinged with sadness. Our little girl Charlie has<br />

grown up and was looking forward to her first<br />

day at Cashmere Avenue Primary School in<br />

Wellington. It was a day that we had talked<br />

about for a long time and here we were.<br />

The night before we packed her new schoolbag, got her<br />

lunchbox ready and talked through what she could<br />

expect. Charlie sat there quietly pondering it all. There<br />

was a sense of excitement but also anxiety about a big step<br />

into the unknown, away from her comfort zone of being<br />

alongside her Mum and her younger sister Georgie.<br />

My wife was sitting on the couch when she received a text<br />

from one of her friends which read: “I’ll be thinking of you<br />

all, sending your mini ‘me’s’ off to a place where you can’t<br />

catch their falls or dry their cheeks, a place that might see<br />

their faces beam red when they make a mistake and<br />

might not see a grazed knee, a place where bumped<br />

foreheads go un-kissed, a place for them to be big and<br />

brave, the humans we have always wanted them to be.”<br />

A flood of tears ran down Katie’s face. How did this day<br />

come around so soon?<br />

It feels like yesterday we were walking out of Auckland<br />

Hospital with our brand-new baby girl. The feeling of<br />

overwhelming joy of holding her in my arms and an<br />

incredible desire to protect her and look after her no<br />

matter what. I was so paranoid about the outside world. I<br />

remember driving down the motorway—at a speed of<br />

60km / hour tops—and cursing at everyone whizzing past<br />

me. “Why is everyone driving so fast?”<br />

Now she’s on her way. Onto her next big adventure. It is<br />

almost time. We make our way down the steps and meet<br />

her new teacher Linda as Charlie shyly makes new<br />

friends. In that moment she’s unsure as she tries to find<br />

her feet, and we say goodbye. It has all gone to plan and<br />

then the bell rings and Charlie realises she will be staying<br />

without us, she runs after us and holds on tight with tears<br />

running down her cheeks. “It is going to be OK honey, just<br />

take it one day at a time. We have to go.”<br />

We drive home and our journey is quiet and reflective. We<br />

would talk if we could.<br />

If there is ever any doubt about how quickly time and your<br />

life passes you by then you see it in your kids.<br />

You see every day we’re given 86,400 seconds which we can<br />

spend as we like. We can invest our time by living positive,


NEW ZEALAND SPINAL TRUST 4<br />

being hopeful, pursuing your goals, being a blessing to<br />

others. Or we can waste it by being disorganised, unhappy,<br />

negative, discouraged, and worried.<br />

Every day we have a choice. It’s up to us, not anyone else,<br />

if we think positively or negatively.<br />

The journey at the start of a spinal cord impairment is the<br />

same. Every person handles that incredibly tough voyage<br />

into a new life in their own unique way, but the one<br />

constant with most people is the ability to be strong,<br />

resilient, positive and to never give up. It is not easy.<br />

I think of all the remarkable people I’ve met in my five<br />

years as the editor of this magazine. Wakeboarder Brad<br />

Smeele, adaptive skier Bailley Unahi, our incredible<br />

columnist Teina Boyd, oboe player Nick Cornish, mouth<br />

painter Dayna Tiwha, and NZ rep bowler Pete Wylie to<br />

name a few.<br />

They are all remarkable individuals in their own right<br />

who have negotiated the path of an SCI in their own way.<br />

All have had their moments when it feels life is too hard to<br />

carry on. They’ve all dusted themselves off and use their<br />

time to be positive, hopeful and pursue their goals. That<br />

is living the life they want to live and living<br />

independently. They don’t know it but they have shown<br />

me, and many others, how to redeem our time.<br />

A few weeks ago, I was at a barbeque at a mate’s place. My<br />

girls were (as per usual) out of control. I was chatting to a<br />

guy who I hadn’t met before who didn’t have kids; “It must<br />

be awesome to wake up everyday and be able to do<br />

whatever you want,” I said, thinking I was being funny.<br />

He replied in a matter-of-fact tone. “It’s not really, I’m<br />

actually really lonely.”<br />

...every day we are given<br />

86,400 seconds which we<br />

can spend as we like.<br />

A few weeks later I catch up with a good mate. He’s doing it<br />

tough. He was made redundant during COVID-19 and now<br />

his contracting work has dried up at the same time the bills<br />

have piled up.<br />

It’s a stressful place and, as in the past couple of years, the<br />

conversation goes to a dark place. He talks about how the<br />

company who made him redundant shafted him, he talks<br />

about how they don’t have a clue, how they took a good<br />

performing team and dismantled it, and how they are fat<br />

cats who don’t care about good hard-working people.<br />

All of that may be true but it’s a narrative to a dark and<br />

negative place which doesn’t help anyone.<br />

It’s time to draw a line in the sand.<br />

I tell him he’s not redeeming his time and the only person<br />

he is hurting by holding on to his hate and anguish about<br />

how he’s been treated is himself and his family. The people<br />

who made those decisions months ago moved on straight<br />

away. He is the only one who cares and is hurting.<br />

When you have a moment to reflect you realise that time is<br />

limited and so precious. Don’t waste it. On average we<br />

spend 80 hours a year looking for things we have lost, we<br />

spend 2.5 hours a day on average on social media (or<br />

around 876 hours per year) and the average American<br />

spends around 5 hours a day watching television (1825<br />

hours or 76 days of each year).<br />

How many hours have I spent, like my mate, feeling<br />

negative, bitter and discouraged? I can’t tell you for sure,<br />

but it’s been too many.<br />

It’s the end of the day now and I’m making my way down<br />

the steps to Cashmere Avenue Primary School where we<br />

had the heart-breaking moment this morning. I stop and I<br />

see Charlie. She’s helping some new friends carry in a small<br />

trampoline into the class room. She’s smiling and laughing<br />

as they try to get it in the door (unsuccessfully), in the end<br />

she helps them figure it out.<br />

Special family time at the beach. In the past five years,<br />

Charlie has grown up in a flash.<br />

I am proud. My little girl is loving the first day of her big<br />

new adventure. She is already a leader. That moment will<br />

stay with me. Life is short. I want to make sure that I am<br />

positive, hopeful, pursuing my goals, being a blessing to<br />

others. I want to be an everyday example to my girls that<br />

I am redeeming my time. I might not be there when her<br />

face beams red when she has made a mistake or to catch<br />

her when she falls in the playground, but I’ll be there every<br />

day to support her to become the fine young woman she<br />

will be.


SPINAL NETWORK NEWS 5<br />

Supporting<br />

Positive Futures<br />

Hans Wouters<br />

CEO’s Column<br />

"I thought I was dying."<br />

This is one person's experience of autonomic dysreflexia.<br />

Another person says he has a "sense of foreboding".<br />

Autonomic Dysreflexia (AD) is a very real and sometimes<br />

very scary event. Regular <strong>SNN</strong> readers may recall Teina<br />

Boyd's powerful "Telling It Like It Is” article in the August<br />

2020 edition recounting an episode of AD where she<br />

clearly thought she was dying.<br />

The New Zealand Spinal Trust (NZST) are currently<br />

undertaking an Autonomic Dysreflexia awareness and<br />

fundraising campaign and it certainly has stirred up<br />

some honest and onfronting conversation.<br />

There is a serious lack of understanding from many<br />

within the medical fraternity in NZ. Time and time again<br />

we hear from our people that they have to educate and<br />

sometimes even negotiate with medical staff whilst<br />

suffering with a life-threatening event.<br />

Way too often we hear of tetras fronting at a hospital or a<br />

doctor’s surgery only to be told to wheel into the waiting<br />

room, “The Dr will be with you soon!” Autonomic<br />

Dysreflexia is a medical emergency requiring immediate<br />

attention. Sitting in the waiting room in this instance can<br />

be hazardous to your health.<br />

One of our members had plastic surgery on a pressure<br />

area a couple of years ago. Four hours after the surgery<br />

they developed AD—it was obvious from the high blood<br />

pressure and the killer headache that came with it.<br />

When they asked for help the Plastic Surgeon returned to<br />

give them a lecture declaring that AD wasn't even 'a thing'<br />

and that they were taking up too much valuable staff time.<br />

Eventually after some incredibly stressful moments<br />

trying to negotiate adequate care, including a<br />

conversation with the Spinal Unit, they were sent by the<br />

surgeon to ICU. The surgeon said "not because your<br />

condition has worsened but because you put too much<br />

load on my staff and have been upsetting them. I like to<br />

think that this is the best little plastic surgery unit in the<br />

country and won't have my staff treated like this”.<br />

This example is clearly an extreme case however, when<br />

'you think you might be dying' is not a time to have an<br />

argument with the one person who can help you—even<br />

save your life!<br />

I have just completed my annual trip representing at<br />

the Show Your Ability expo and our decision to raise<br />

funds to produce and distribute much needed AD<br />

resources has been heartily endorsed in the community.<br />

A number of clinical staff have confessed to having little<br />

to no understanding of AD and were very grateful for<br />

Hans presenting at ‘Show Your Ability’.<br />

There is a serious lack<br />

of understanding from<br />

many within the medical<br />

fraternity in NZ.<br />

—Hans Wouters<br />

our educational program. You can view the video or<br />

access the resources free of charge from our website<br />

and we encourage you to spread the word.<br />

www.nzspinaltrust.org.nz/ad<br />

It is often said "there is a first time for everything". Often<br />

after a spinal cord impairment most things reset and<br />

there are a whole lot of firsts all over again. The first time<br />

you see someone who means a lot to you post injury, the<br />

first time you get on public transport, go to the shops, a<br />

bar or an event, the first time you roll out your driveway. I<br />

heard a wonderful suggestion recently that might be


NEW ZEALAND SPINAL TRUST 6<br />

helpful to address the fear of any upcoming 'firsts' and<br />

perhaps prepare yourself as much as possible to not be<br />

sideswiped by emotion or anxiety as you encounter it.<br />

Compose a list of all the firsts you are anticipating, think<br />

about these events and prepare your mind with optimism<br />

and eager anticipation rather than dread or denial. A<br />

good friend of mine talks about 'leaning in' to tough<br />

situations rather than shying away or fearing the worst.<br />

You can do it: you have proven it to yourself before, and<br />

the unknown (where most fear comes from) is soon<br />

revealed with relief once the ice is broken. I hope you are<br />

leaning into life and feeling the pride and delight that a<br />

courageous act can elicit. If you are not sure or would like<br />

to chat to someone, give us a call, maybe we can help. I<br />

hope you enjoy this issue of <strong>SNN</strong>—I don’t know about you<br />

but I think they just get better and better. Kia kaha. <br />

—Hans Wouters<br />

Often after a spinal cord<br />

impairment most things<br />

reset and there are a whole<br />

lot of ‘firsts’ all over again.


SPINAL NETWORK NEWS 7<br />

Autonomic Dysreflexia<br />

All you need to know<br />

High blood pressure is one of the main symptoms of AD.<br />

In the <strong>SNN</strong> August issue in 2020, Teina Boyd<br />

gave a raw and honest account of her<br />

experience of autonomic dysreflexia which<br />

required immediate emergency treatment.<br />

Since February <strong>2021</strong>, the New Zealand Spinal Trust<br />

(NZST) has been running an education campaign on<br />

Autonomic Dysreflexia (AD) and the feedback we have<br />

received has reinforced that this campaign was<br />

long overdue!<br />

Even the NZST learned something … that AD can present<br />

in people with an SCI lower than T6 (although this is rare).<br />

AD is a medical condition that causes a sudden increase<br />

in blood pressure requiring immediate emergency<br />

attention, and can lead to a stroke, heart attack, seizures,<br />

even death. Typically, any tetraplegic with an SCI at level<br />

T6 (mid-chest) or above is at risk. For the rest of their life.<br />

“I am tired of trying to explain to health professionals what<br />

AD is and what the treatment plan should be … When you<br />

are feeling that bad and scared, last thing I should have to<br />

do is advocate for the correct diagnosis or treatment.”<br />

AD occurs when there is a physical issue below the injury<br />

level (e.g., bladder or bowel distension, pressure sore,<br />

sunburn, constricted blood flow, etc). The body’s nervous<br />

system sends impulses along the spinal cord with the<br />

message “something’s wrong”. When these impulses<br />

reach the level of injury, sympathetic neurones activate<br />

and cause the release of chemicals which in turn cause<br />

blood vessels in the skin and abdomen to restrict, and<br />

blood pressure to rise. This rise in blood pressure is<br />

detected by sensors in the heart and neck (baroreceptors),<br />

which signal the brain. The brain then sends a message<br />

AD is a medical condition<br />

that causes a sudden<br />

increase in blood pressure<br />

requiring immediate<br />

emergency attention.<br />

down the spinal cord, effectively saying “message<br />

received, and action will be taken” and the blood vessels<br />

open up and pressure is relieved. But in AD, the message<br />

can’t get past the cord injury and so only vessels above<br />

this level dilate—vessels below keep constricting as they<br />

believe the original “something’s wrong” message isn’t<br />

getting through … and blood pressure keeps rising.<br />

Symptoms of AD include:<br />

• Flushing and sweating above the injury level<br />

• Nasal stuffiness<br />

• Goose bumps and paleness below injury level<br />

• Sudden high blood pressure (hypertension)<br />

• Pounding headache<br />

• Slow heart rate (bradycardia)<br />

• Blurred vision or spots in vision<br />

• Irregular heartbeat<br />

• Anxiety or apprehension


NEW ZEALAND SPINAL TRUST 8<br />

It is possible to have no symptoms apart from increased<br />

blood pressure … this is known as ‘silent autonomic<br />

dysreflexia’ and it is important that those at risk of AD are<br />

aware it exists. Any unexplained rise in blood pressure<br />

could be silent AD.<br />

Many medical professionals have not experienced a<br />

patient with AD and as a consequence may not be fully<br />

aware of the gravity of the situation.<br />

Treatment must happen quickly—this is the key. And it<br />

can be as simple as sitting the person upright and<br />

lowering their legs, or loosening belts, footwear or<br />

binders. It could be straightening a kink in a catheter.<br />

Many who are at risk of AD are very aware of the<br />

symptoms and the action they need to take. Some keep a<br />

Glyceryl Trinitrate spray handy to help keep symptoms at<br />

bay while the cause is dealt with or professional medical<br />

help arrives.<br />

If there is any doubt or the person is not responding it’s<br />

vital that 111 is called, and the operator told it is<br />

Autonomic Dysreflexia or a spinal hypertensive crisis.<br />

The NZST’s AD education campaign is aimed at spreading<br />

this information to everyone who may interact with<br />

someone at risk. Posters, leaflets, wallet cards have all<br />

been produced and given out to pharmacies, medical<br />

clinics, hospital wards etc, and are available to download<br />

on NZST’s website. A short informational video is also<br />

available on the NZST website. For those who find<br />

themselves admitted to one of NZ’s two spinal units, the<br />

NZST’s “Back on Track” book includes a chapter on AD,<br />

and all patients at most risk of AD get a wallet card.<br />

All of this is produced to be as informative and easily<br />

understood as possible so it can be shared far and wide …<br />

with family, friends, workmates, employers, sports clubs,<br />

support workers etc.<br />

“The information we received in the mail this week from<br />

NZST was really informative and eye opening, as I had<br />

never heard of it before!” <br />

For more information, or to download the poster<br />

www.nzspinaltrust.org.nz/ad<br />

To donate to NZST’s work www.nzst.org.nz


SPINAL NETWORK NEWS 9<br />

Improved Collection Bag<br />

Easy-to-open and easy-to-empty collection bag<br />

for cleaner handling<br />

Design features:<br />

• 50%* smaller and more ergonomically shaped<br />

protective tip, for a more comfortable insertion<br />

• Transparent protective tip to aid visualisation<br />

• More discreet packaging design<br />

• Less waste as a result of new design<br />

Order your sample now. Use code IMP<strong>SNN</strong>.<br />

Email NZCustomerService@libmed.co.nz<br />

or Visit www.hollister.co.nz/vapro<br />

*As measured by volume of material used.<br />

Prior to use of VaPro catheters, be sure to read the Instructions for Use for information<br />

regarding Intended Use, Contraindications, Warnings, Precautions, and Instructions.<br />

VaPro Plus Pocket <br />

No Touch Intermittent Catheter<br />

The Hollister logo and VaPro Plus Pocket are trademarks of Hollister<br />

Incorporated. ©<strong>2021</strong> Hollister Incorporated.ALL-00143 February <strong>2021</strong>


NEW ZEALAND SPINAL TRUST 10<br />

Kia Kaha, Kia Māia,<br />

Kia Manawanui<br />

(Be Strong, Be Brave, Be Steadfast—Māori proverb)<br />

The inspirational story of Harper Heta<br />

Harper has become a natural inspiration to others<br />

with her positive attitude. Credit Shane Boulton / ACC.<br />

When she was seven years old, Harper Heta's<br />

life changed in a moment. The young<br />

Aucklander broke her back in a gymnastics<br />

injury at home. Five years on, after a tough<br />

rehabilitation, she is a "pillar of light" to her<br />

whānau and community.<br />

Harper is the leader of her local kapa haka group and<br />

opened the Attitude Awards held in December 2020 with<br />

an inspiring dance performance from her wheelchair. We<br />

caught up with Harper to talk about her recovery and her<br />

ambition to help others overcome adversity.<br />

Seven-year-old Harper bends over backwards, excited to<br />

show her Aunty a gymnastics move. Harper is a sporty<br />

girl and just loved doing hand stands in the air and<br />

against the wall at home. She had been teaching herself<br />

how to do a back bend and used the stairs for momentum<br />

when she fell.<br />

Now 12 years old, Harper is<br />

on her seventh wheelchair,<br />

and is already ticking off<br />

her life goals.<br />

Harper picked herself up and managed to make it to the<br />

sofa. She tried to get up to get a glass of water but couldn’t.<br />

Not long after her fall, her Nana arrived home and Harper<br />

said: “Nan, I can’t move”.<br />

Harper remembers the drive to Kaitaia Hospital, the<br />

needles from a nurse—she doesn’t like needles—and the<br />

helicopter flight to Auckland’s Starship Hospital.


SPINAL NETWORK NEWS 11<br />

Five years on, her mother, Lara, still gets emotional when<br />

remembering that day and meeting Harper off the<br />

helicopter in Auckland.<br />

“It was pretty scary,” she said. “In that moment, we didn’t<br />

know what was going to happen. We had no idea she<br />

would become paraplegic.”<br />

Five weeks in hospital was followed by three months at a<br />

children’s rehabilitation centre learning how paraplegia<br />

can change a person’s life.<br />

Now 12 years old, Harper is on her seventh wheelchair,<br />

and is already ticking off her life goals.<br />

“My shoulders ached a lot when I first started pushing my<br />

wheelchair, but I had physio and it helped me a lot, to gain<br />

strength in my arms and my shoulders to help push<br />

myself. And then I was off. It was great!” Harper said at<br />

her home in Kaukapakapa, about 50 km north-west<br />

of Auckland.<br />

And she hasn’t stopped since.<br />

Harper is one of the leaders at her school’s kapa haka rōpū<br />

(group); she played a starring role along-side two other<br />

dancers at the 2020 Attitude Awards—a nationally<br />

televised event celebrating the achievements and<br />

successes of New Zealanders living with disabilities.<br />

Harper has been interviewed by children’s news site Kea<br />

Kids and, like a typical 12-year-old, she loves hanging out<br />

with her friends and biking, thanks to an attachment<br />

which turns her wheelchair into a three-wheeled bike.<br />

Harper hasn’t always been so positive about her life after<br />

the injury. “I’ve definitely had times when I was really<br />

down,” she said, such as when she was about 10 and felt<br />

sad she couldn’t play the sports she really wanted to play.<br />

“I think being in kapa haka has given me a lot more<br />

confidence. We’ve created a whānau and, being in the<br />

group, I’ve gained friendships from the group, and we all<br />

support each other.”<br />

It has also helped her to connect with her Māori roots,<br />

said Lara. “She may not understand everything she does,<br />

because she’s only 12, but I know she feels it. And it’s<br />

really cool to watch.”<br />

ACC supports Harper with visits to a psychologist to help<br />

with her emotions. And, her ACC Recovery Partner,<br />

Justine Hunter, understands Harper’s unique needs<br />

better than most.<br />

Justine is also a paraplegic and uses a wheelchair. She<br />

was a competitive gymnast when she was eight years old<br />

she was in a car accident, which injured her back.<br />

“Justine’s been a big help. She’s definitely one of my<br />

idols, and she’s definitely someone I can look up to,”<br />

said Harper.<br />

Lara echoed her support of Justine. “We met her at the<br />

rehab facility, and we were new to all of this, so we didn’t<br />

Harper and her ACC Recovery Partner Justine Hunter have<br />

forged a special relationship. Justine understands Harper’s<br />

unique needs better than most. Credit Megan Sellars / ACC.


NEW ZEALAND SPINAL TRUST 12<br />

Harper’s advice for “anybody in the same situation as me is definitely ‘don’t waste your time”. Credit Shane Boulton / ACC.<br />

know what was going on. And she was just really<br />

relatable to me, to Harper, to the situation. And she’s<br />

been hugely inspiring.”<br />

“Justine has been a part of Harper’s whole entire journey<br />

in terms of equipment, starting new sporting activities,<br />

adventures—because, when you become a person in a<br />

wheelchair, life looks a little bit different.”<br />

Justine remembered that first meeting with Lara,<br />

listening to her concerns.<br />

“I remember telling Lara there was no need to wrap<br />

Harper in cotton wool, and to allow her to figure out life<br />

when she was ready, to let her take risks, and to have the<br />

exact same expectations for her as she would for any one<br />

of her children, so she’d grow up into a healthy individual<br />

with respect for herself.”<br />

Harper has been in a wheelchair for almost half her life<br />

and has learnt to cope with the challenges.<br />

“My advice to anybody in the same situation as me is<br />

definitely ‘don’t waste your time’. I know that many<br />

people in a wheelchair do get a little depressed by their<br />

situation, but they don’t realise they can do a lot more if<br />

they have the right mind-set.”<br />

Lara, a mother of six, said: “Every new experience she is a<br />

part of enriches our life so much, and we probably<br />

wouldn’t have gained all that enriching love, because we<br />

would just be a normal family. She is a pillar of light.”<br />

Justine said seeing Harper become more independent<br />

and confident has been rewarding.<br />

—Lara Heta, Harper’s Mum<br />

Every new experience that she<br />

is a part of enriches our lives<br />

so much, and we probably<br />

wouldn’t have gained all that<br />

enriching love, because we<br />

would just be a normal family.<br />

“ACC provided an adaptive bike attachment for her<br />

wheelchair, so she can go to school independently, like<br />

the rest of her siblings, and housing modifications mean<br />

she can easily access all her siblings’ rooms, and the rest<br />

of her home, including an area where she can make her<br />

own snacks.”<br />

For Harper, being in a wheelchair isn’t holding her back.<br />

“One of my goals is, when I'm older, I want to be an<br />

inspirational ambassador, because I feel like people do<br />

need to know and hear from the perspective of someone<br />

who’s different or someone who has differences.<br />

“And I feel like they need to understand that<br />

everyone is basically the same, some just more unique<br />

than others.”


SPINAL NETWORK NEWS 13<br />

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both hands, thanks to my<br />

Satellite Accelerator”


NEW ZEALAND SPINAL TRUST 14<br />

Qigong Fitness Class<br />

Developing the skills to maintain a calm and relaxed state<br />

Christine Hosking with members of the Qigong Class at Burwood Hospital.<br />

Qigong is an ancient Chinese system of<br />

coordinated body-posture and movement,<br />

breathing, and meditation used for the<br />

purposes of health, spirituality, and<br />

martial-arts training. Qigong is traditionally<br />

viewed by the Chinese as a practice to<br />

cultivate and balance qi (pronounced as<br />

"chi"), translated as "life energy".<br />

Christine Hosking is a Client Service Manager for<br />

Healthcare New Zealand, her role involves supervising<br />

nearly 40 support workers who assist people with spinal<br />

cord impairment (SCI). In her spare time, Christine has<br />

practised Yuan Qigong for 11 years and for the last two<br />

years has been teaching classes at Burwood Hospital. The<br />

<strong>SNN</strong> met with Christine to find out more about the<br />

benefits of Qigong and why it is so beneficial.<br />

—Christine Hosking<br />

The benefits to practising<br />

Qigong are limitless and<br />

everyone can benefit no<br />

matter what their physical<br />

ability is.


SPINAL NETWORK NEWS 15<br />

How long have you practised Qigong? How did this<br />

come about?<br />

I’ve been practicing Yuan qigong for 11 years now. When I<br />

started, I was working as a practice manager for a large<br />

integrative medical centre. While in this role, I became<br />

very interested in how we can best develop and maintain<br />

good health and a sense of wellbeing using a holistic<br />

approach. I was also keen to understand how we can<br />

change things in our lives that are preventing us being<br />

healthy and happy.<br />

One of the doctors at the practice was learning Yuan<br />

Qigong, and introduced me to it. I very quickly felt the<br />

results of doing the practice, and soon embarked on a<br />

six-year training course to be a Yuan Qigong teacher. This<br />

quickly manifested into many positive changes both in<br />

my health and life overall.<br />

What are the benefits of practising Qigong?<br />

The benefits to practising qigong are many and limitless,<br />

and everyone can benefit no matter what their physical<br />

ability is. There are obvious benefits such as improving<br />

the health of the entire body, increased strength and<br />

flexibility, developing the skills to maintain a calm and<br />

relaxed state, and improving mood by using techniques<br />

such as breathing and visualisation.<br />

Qigong consists of moving and still meditations guided by<br />

the Qigong teacher and can be learned easily. The<br />

methods are adaptable to the student and their abilities.<br />

Some of my students have not been able to move their<br />

bodies at all due to severe spinal injury and they have<br />

joined the class and got a lot of benefit using the guided<br />

meditations. One person even came in their bed. There<br />

has been some truly inspiring feedback from students<br />

with spinal injury. Engaging with a Qigong teacher to<br />

learn some techniques, particularly if there are special<br />

areas that a person wishes to work on, can be<br />

life-changing over time.<br />

You have been teaching a weekly class for SCI people at<br />

Burwood Hospital for the last two years. How did this<br />

come about?<br />

I was invited to teach a set of four introductory sessions<br />

by a member of the Peer Support team, working for the NZ<br />

Spinal Trust (NZST), who knew I was a Qigong teacher.<br />

This initial engagement was for a woman’s group to try it<br />

out as an activity. They all enjoyed it so much that they<br />

asked me to continue teaching the class, and it was then<br />

opened up to anyone who wanted to attend. This was over<br />

two years ago. I ran the class through Zoom during<br />

lockdown, which the participants found really beneficial<br />

during that challenging time.<br />

Those who attend your class find it very beneficial.<br />

Why do you think this is? I’ve been a few times<br />

and always find that I sleep really well on the days<br />

I’ve attended.<br />

I understand from the feedback I receive that some people<br />

who attend experience reduced pain and discomfort, even<br />

from injuries that are years old, and including a decrease<br />

in spasm. Increased strength and flexibility, with an<br />

ability to be more relaxed and cope better with life’s<br />

challenges is also a common feedback. We also practice<br />

mindful awareness and breathing techniques that can be<br />

used any time to help maintain a calm and relaxed state.<br />

Improved sleep is very commonly reported, and<br />

improvement of health generally. Participants now have a<br />

tool-kit of methods to use at home to improve their<br />

emotional state and physical wellbeing, and to help them<br />

sleep. The participants say they feel better overall.<br />

Can you tell me about your role with Healthcare NZ?<br />

I am a Client Service Manager for HealthCare New<br />

Zealand. I work in a specialist area of the organisation,<br />

managing the services for clients with serious injury<br />

living in their own homes. I also manage about 40<br />

support workers who work for my clients. Most of my<br />

clients have serious spinal injuries, so I have a very good<br />

understanding and ability to adapt the Qigong methods<br />

to support those who attend. I also have a nursing<br />

background and worked in Dunedin Hospital for a<br />

number of years.<br />

HealthCare NZ supports me in providing these weekly<br />

classes, by enabling me to run them during my working<br />

day. I feel very grateful to HealthCare NZ (and my<br />

wonderful senior managers) for so generously<br />

supporting this opportunity; both for myself, and the<br />

people who have attended my Yuan Qigong class for the<br />

last two years.<br />

Is there anything else you would like to add?<br />

My experience running my class at Burwood Hospital has<br />

been truly inspiring. The feedback I get is clear evidence<br />

that Yuan Qigong is a very effective modality for<br />

improving health, happiness and wellbeing over time, no<br />

matter the condition or ability of the person learning. It<br />

can be adapted to suit anyone, and everyone can benefit.<br />

There is wonderful camaraderie and encouragement<br />

between us all too, and we help each other by discussing<br />

our challenges. We are all learning together.<br />

I have a great admiration for the NZ Spinal Trust and the<br />

work they do, it’s absolutely amazing and inspiring. Most<br />

of my clients have serious spinal injury and so I’m very<br />

aware of all the work the NZST does for New Zealanders<br />

with SCI on many different levels including advocacy.<br />

I think the fact that Jazz and Andrew are great supporters<br />

of Qigong and its benefits also says a lot about the<br />

openness of the trust, their constant research and their<br />

willingness to try other rehabilitative modalities for<br />

people with SCI.<br />

There are trained Yuan Qigong teachers running classes<br />

like mine all over New Zealand. If anyone wants more<br />

information, please do get in touch with me. <br />

For more information contact Christine Hosking<br />

Christine.Hosking@gmail.com<br />

Mobile: 027 283 7671


NEW ZEALAND SPINAL TRUST 16<br />

“A Game Changer”<br />

Mike Brown explains the story behind the LapStacker<br />

Mike Brown with the LapStacker. He says the aim of Adaptdefy is to create more game changing products for people with mobility concerns.<br />

Mike Brown is an ideas man. The 43-year-old<br />

from Christchurch, who sustained an SCI in<br />

2012, started Adaptdefy in 2020, a media and<br />

product development company on a mission<br />

to increase freedom for wheelchair users and<br />

the adaptive community.<br />

We caught up with the former NZST Spinal Trust<br />

Marketing and Community Manager to talk about the<br />

LapStacker and what it means to have ACC backing it.<br />

—Mike Brown<br />

The aim of Adaptdefy is to<br />

create more game changing<br />

products for people with<br />

mobility concerns.<br />

For the uninitiated, what is the LapStacker?<br />

The LapStacker is the world’s first retractable system for<br />

wheelchairs. Essentially if you want to carry something<br />

on your lap as a wheelchair user, it’s often difficult to do<br />

so without the item falling off. You are pushing the<br />

wheelchair with your hands and you can’t hold onto<br />

something because your hands are occupied.<br />

The LapStacker is a self-locking, strap system that you<br />

can pull up from your side and you latch the metal buckle<br />

over the item you wish to carry, and it locks it down onto<br />

your lap. It’s great because you no longer have to worry<br />

about things falling off your lap.<br />

How did you come up with the idea?<br />

Like most ideas, the LapStacker was borne out of a need<br />

that I had. To put it simply, I was sick of dropping things<br />

and feeling frustrated and slow and embarrassed. We<br />

were renovating our house and I was carrying an<br />

assortment of tools and an open-top toolbox. The tools all<br />

fell off my lap as I was coming out of the garage and into<br />

the house. They went everywhere. I thought to myself,<br />

this just sucks. So, I thought how can I stop this from<br />

happening, and that’s where it started.


SPINAL NETWORK NEWS 17<br />

How did you come up with the design?<br />

Any design process starts with ideation. We went through a<br />

range of different concepts. One of the concepts that came to<br />

the surface was trying out a seatbelt mechanism with a basic<br />

latch and mounting that to my wheelchair to see if that<br />

would work. The key was whether it would actually hold an<br />

item down. The first test was successful and from there the<br />

design process took over. It was a long process with lots of<br />

different prototypes and lots of blood, sweat and tears.<br />

What sort of feedback have you had from<br />

LapStacker users?<br />

We have been blown away. We launched a pre-launch<br />

campaign on Kickstarter which helped us validate the<br />

idea. We had loads of people backing us which showed us<br />

that the problem was real, and our solution was something<br />

that people believed would help. A lot of people have said<br />

it is a game changer for them, so when someone says that<br />

it means there is nothing like it on the market. It’s a world<br />

first and it’s patented. We have had people get in touch to<br />

say thanks, and how it has made a huge difference to their<br />

lives. We’ve also had feedback on the design. This is the<br />

first iteration. So, we have had comments about the price,<br />

the weight, the installation—which is great because we<br />

use the feedback to make improvements. We have got a<br />

nice community of people who love us and love the<br />

LapStacker so they give us honest feedback.<br />

What challenges has COVID-19 posed for your business?<br />

The first interruption with COVID-19 was manufacturing.<br />

We manufacture in China and I went there to visit and vet<br />

our factories. Lockdown in China happened first so all of<br />

our manufacturing closed down. That was really poor<br />

timing because we were very close to having the product<br />

out to our pre-order customers and new customers and we<br />

were delayed for a great deal of time. I had also left my<br />

fulltime role at the NZ Spinal Trust around the same time.<br />

So that meant our limited cash reserves were being eaten<br />

into quickly. Those manufacturing delays meant there were<br />

also delays with income which meant we were bleeding. We<br />

had to go out to our investors and also find some new<br />

investors to raise some money to get through that period. It<br />

was a very stressful time. We were transparent with our<br />

customers at that time and they appreciated our honesty.<br />

How big is your business and what is the purpose<br />

of Adaptdefy?<br />

It’s a small business. We are one product. It is called the<br />

LapStacker. We are selling it online and we have<br />

customers in 14 different countries around the world. We<br />

have dealers in Japan, the US, Switzerland, two in<br />

Australia, and several here in New Zealand. We are<br />

growing slowly. The aim of Adaptdefy is to create more<br />

game changing products for people with mobility<br />

concerns. We are a business that wants to do good in the<br />

world. We want to create products that help people. We<br />

also produce media content in the form of Podcasts and<br />

videos and our aim is to showcase some people who have<br />

overcome incredible challenges and help them share that<br />

knowledge. In New Zealand we have sold around 100<br />

LapStackers and more and more people are talking about<br />

it and showing their friends.<br />

Getting any medical<br />

products can be costly so for<br />

ACC to fund the LapStacker<br />

is a huge help.<br />

What does it mean to have ACC fully funding the<br />

LapStacker for anyone who sustains an SCI?<br />

We are incredibly lucky in this country to have ACC. For<br />

them to fund the LapStacker is beneficial to people who are<br />

funded by ACC and it is also beneficial to us. Often in the<br />

disabled community getting any medical products can be<br />

costly so for ACC to fund the LapStacker is a huge help. It<br />

means that more people will be able to enjoy the benefit of it.<br />

How do people go about getting the LapStacker?<br />

The LapStacker is available on our website<br />

www.adaptdefy.com and through a number of different<br />

dealers. If you want to get this funded through ACC or<br />

MoH then you need to ask your Recovery Partner and<br />

explain the problems you are having. You will then be<br />

directed to an OT (Occupational Therapist) who will then<br />

contact us or one of the dealers. There are lots of different<br />

ways to get hold of the LapStacker and we are able to<br />

answer any questions they may have.<br />

Are there any other products that Adaptdefy is<br />

working on?<br />

—Mike Brown<br />

We also have a part to play in the development of the<br />

world’s first two wheeled adaptive mountain bike that can<br />

be ridden on single tracks. There’s information about that<br />

on our website. We have a range of different ideas which<br />

are similar to the LapStacker. They may make a small<br />

difference to a person’s life but when you add them all up,<br />

they make a big impact. We are at ideation stage for a<br />

lighter, cheaper and simpler to install LapStacker, and<br />

mounting options for a powered wheelchair.<br />

How did your time at the NZST help shape your work<br />

with Adaptdefy?<br />

My time at the NZ Spinal Trust gave me a deeper<br />

understanding of the challenges our community faces,<br />

and the pain points that people have. It also showed me<br />

the challenge of reaching people and bringing people into<br />

a community. Just because you have a lot of people in<br />

wheelchairs, it doesn’t mean you always hang out with<br />

other wheelchair users. They are scattered across the<br />

whole country. It’s hard to reach everyone. With<br />

Adaptdefy we can see the need for good quality content.<br />

We started that with Wheelie Good Tips, and I want to<br />

keep doing that with Adaptdefy. <br />

Check out Wheelie Good Tips on the NZST website<br />

www.nzspinaltrust.org.nz/wheeliegoodtips


NEW ZEALAND SPINAL TRUST 18<br />

That’s a Tough Question…<br />

Mike Brown’s advice for newcomers to an SCI<br />

Mike's 10 tips:<br />

1. Try to listen to your internal voice, and acknowledge<br />

that voice, but also realise that that voice isn’t<br />

necessarily you. So you may have a voice inside your<br />

head that is telling you bad things about yourself.<br />

You have got control of that. My advice would be to<br />

spend as much time as you can working on your<br />

mindset, your internal voice.<br />

2. Accept that other areas of your life may have to go on<br />

hold until you get yourself sorted with the basic<br />

health and psychological needs.<br />

3. Let your emotions flow, whatever they may be. Be<br />

kind to the people around you because they are also<br />

impacted in a big way. Don’t be afraid to ask for help.<br />

4. Get out of your comfort zone. It could just be getting<br />

out of your house for the first time and going to the<br />

local store. Lean into those first experiences no<br />

matter how uncomfortable and how afraid you are.<br />

Do them as quickly as you can because you will learn<br />

a great deal and you will overcome that hurdle and<br />

you will grow in confidence every time you have one<br />

of those experiences. Life can be amazing. It is totally<br />

up to you.<br />

Not looking back. Mike Brown has gone through plenty of<br />

highs and lows and is always looking forward.<br />

On a quiet morning in a small, rural town in<br />

Queensland, Mike Brown’s life changed<br />

forever. The Wellingtonian, who was working<br />

in a bauxite refinery in Australia, was skating<br />

along the quiet streets where there were no<br />

cars around.<br />

“But on the last corner, I collided with an oncoming car.<br />

That was the start of my paraplegic career,” he says. Mike<br />

has shown incredible resilience throughout the highs and<br />

lows of his rehabilitation and recovery. He’s had an SCI for<br />

almost 10 years now and is in a good place to offer 10<br />

pieces of advice for others who have sustained an SCI and<br />

are at the start of their journey.<br />

5. You cannot blame external forces. Don’t play the<br />

victim. Accept what happened to you and move on.<br />

Let go of the blame and resentment you have for any<br />

reason. You have to forgive and let go of the past. Set<br />

yourself some goals and work your way to achieving<br />

them. No matter how small a task may seem,<br />

embrace it.<br />

6. Connect with people who are further down the track<br />

than you and ask them for help. Realise it is going to<br />

take a lot of energy and a lot of your time to learn<br />

about the new reality that you now face. Give yourself<br />

that time.<br />

7. If you are in a relationship make sure you use your<br />

time to communicate as effectively as you can.<br />

Non-violent communication is a great tool to have.<br />

Spend some time on learning about your own<br />

personal growth and mastering your mindset.<br />

8. Appreciate the small things. Be present. Enjoy every<br />

moment you have got. Enjoy the people around you.<br />

You only have one life so make the most of it.<br />

9. Find a life coach—someone who can shape your<br />

future and help you get through things.<br />

10. Mindset, mindset, mindset that is the key foundation<br />

for everything. Get out, there try new things. Be<br />

brave and be curious. Have fun.


SPINAL NETWORK NEWS 19<br />

A Never-Say-Die Attitude<br />

The incredible fighting spirit of Brook Macdonald<br />

Red Bull professional Brook Macdonald competing at the UCI<br />

Mountain Bike World Cup in Austria. Photo credit: Red Bull.<br />

Brook Macdonald was sitting on his bike at<br />

the top of the Hawke’s Bay Mountain Bike<br />

Trail and paused for a moment—he had been<br />

dreaming of this day for the past six weeks<br />

and it had finally arrived.<br />

On this fine and cool Hawke’s Bay morning, Brook had a<br />

million things racing through his mind: his surgery, the<br />

physio, learning to walk again, the tears and heartache of<br />

a dream seemingly gone, the agony of his crash and the<br />

daily grind of his intense rehabilitation to get back here.<br />

There was no fear in his mind, just pure child-like<br />

excitement—he was back where he belonged.<br />

“That first time back on my bike in the forest - it was the<br />

greatest feeling in the world,” said the Red Bull<br />

professional rider, in his typical laid-back manner.<br />

“Fear was the last thing on my mind to be honest. After<br />

what I have been through, I thought there would be some<br />

lingering fear and doubt, but there never has been. I just<br />

couldn’t wait.”<br />

—Brook Macdonald<br />

That first time back on my<br />

bike in the forest—it was the<br />

greatest feeling in the world.<br />

That day was only six weeks after Brook sustained a<br />

broken back, which looked to end his professional<br />

mountain-biking career and change the course of his life.<br />

He was competing at the World Mountain Bike<br />

Championship in Mont Saint Anne, Canada, in August<br />

2019. On the first practice run in the morning, he<br />

remembered feeling “really good” after qualifying<br />

third fastest.<br />

Brook was ‘humming’ around the trail when his back<br />

wheel caught some exposed roots which sent him flying<br />

over the handlebars.


NEW ZEALAND SPINAL TRUST 20<br />

He fell from the height of three metres straight down on<br />

to his back, which caused a significant impact on his<br />

spine. Brook fractured his T12 and L1 vertebrae.<br />

“I remember the pain was excruciating,” he said. “I<br />

realised I couldn’t roll because I couldn’t feel my legs. I<br />

knew then that it was pretty serious. I didn’t have any<br />

painkillers … I was pretty scared in that moment.”<br />

Brook’s plight did not improve quickly. He spent five<br />

hours on the mountain in excruciating pain, waiting for<br />

the helicopter to arrive. It felt like forever.<br />

“The whole situation was pretty horrible and the pain was<br />

getting worse,” he said. “I was told to hold tight, that the<br />

helicopter was coming, but nothing happened…<br />

“At the time, I accepted what had happened and, if I was<br />

going to be paralysed, then I was going to be paralysed. If<br />

not, well that was going to be a good thing.”<br />

Brook went straight into emergency surgery on his spine<br />

and spent the next two weeks in hospital in Quebec.<br />

His fiancée was told by Doctors there was a chance her<br />

partner would never walk again.<br />

“No one ever told me that I was going to be in a<br />

wheelchair,” he said. “Which was really good, because it<br />

drove me to be back where I am today. The best thing<br />

about my recovery was not being told those words.”<br />

Brook was flown home and continued his rehabilitation at<br />

the Burwood Spinal Unit in Christchurch.<br />

Every day, for four weeks, he would work with Quinn, his<br />

physiotherapist, twice a day and make small gains.<br />

Brook’s ACC Recovery Co-ordinator, Kat Matthews, said<br />

he was a very motivated guy who fully committed to<br />

his rehabilitation.<br />

—Kat Matthews, ACC Recovery Partner<br />

Brook was amazing to work<br />

with. He was very motivated<br />

and did everything he could<br />

to be back walking and<br />

cycling post-accident.<br />

“Brook was amazing to work with. He was very motivated<br />

and did everything he could to be back walking and<br />

cycling post-accident”.<br />

Kat would contact Brook to make sure he was on track and<br />

said he was always progressing better than expected.<br />

“When I got his claim, based on the severity of his<br />

injuries, I wasn’t sure Brook would be able to ride his bike<br />

again, so he has done incredibly well.”<br />

Five weeks after sustaining a spinal cord impairment,<br />

Brook walked out of the Burwood Spinal Unit.<br />

“That was an amazing moment,” he said. “My biggest<br />

goal was to walk out of Burwood unassisted and, to<br />

achieve that, was awesome. I hadn’t been home for three<br />

months and I never spend that much time away from<br />

home. I felt free again.”<br />

Kat said the man, known as “Bulldog” for his<br />

hard-charging mountain-biking style and never-say-dieattitude,<br />

showed an unrelenting determination and<br />

positive attitude.<br />

Brook Macdonald has shown incredible commitment to his rehab to<br />

get back to competing at the highest level. Photo credit: Red Bull.


SPINAL NETWORK NEWS 21<br />

No fear. Brook says: “After what I have been through, I thought<br />

there would be some lingering fear and doubt, but there never<br />

has been. I just couldn’t wait.” Photo credit: Red Bull.<br />

“Throughout managing his claim, he never complained,<br />

no matter what was going on, and he was always very<br />

proactive and involved in his recovery. He is an amazing<br />

guy and I’m happy he is back doing what he loves.<br />

Brook was proactive in his rehab. He advised Kat that he<br />

had rented a car in Christchurch, so he could get<br />

outdoors, which was important for his mental health.<br />

ACC played a leading role in Brook’s recovery<br />

and rehabilitation.<br />

“To come home seriously injured and to know that<br />

everything was covered was a huge relief,” he said.<br />

Also playing a huge role was the support of the global<br />

mountain bike community. Brook was blown away by the<br />

number of people who got in touch and wished him well.<br />

“Every day that I got sent ‘get well’ wishes or cards it was<br />

a big lift for my mental state and kept encouraging me to<br />

keep going. It was a big part of getting through my<br />

whole recovery.”<br />

That support was even better when he returned to<br />

competitive action at the UCI Mountain Bike World<br />

Championships in Austria in October.<br />

“To have the adrenalin again from competing was a great<br />

feeling. Just to see and compete against the same people<br />

that I had before my accident was pretty special. I know<br />

I’m lucky to be able to do what I love.”<br />

—Brook Macdonald<br />

My biggest goal was to<br />

walk out of Burwood<br />

unassisted and, to achieve<br />

that, was awesome.<br />

Brook and three others ran a half marathon in their hotel<br />

rooms in quarantine on their return to New Zealand.<br />

They raised $25,000 for the Burwood Spinal Unit and the<br />

Westpac <strong>Res</strong>cue Helicopter.<br />

“My space was around eight metres from wall-to-wall, so<br />

it was a different way to run a half marathon,” he laughs<br />

“But it was good to give back to all of the people who<br />

helped me.”<br />

After what he had been through, he hopes to complete a<br />

full calendar of mountain-biking events in <strong>2021</strong>,<br />

COVID-19 permitting.<br />

“I’ll never forget what I’ve been through. I never take<br />

a single day riding my bike for granted, after what I<br />

have experienced. I want to make the most of<br />

every opportunity.”


NEW ZEALAND SPINAL TRUST 22<br />

Brook has good advice for anyone who has sustained a<br />

spinal cord impairment.<br />

“Never give up,” he said. “You’ve been put in a pretty<br />

tough situation, but you need to know that anything is<br />

possible. The biggest thing for me was setting goals and<br />

working towards achieving them day by day. Anything is<br />

possible—that is for sure.” <br />

Editor's Note: Are you a cyclist?<br />

Brook’s good friends at www.stemcaps.com have added a<br />

NZST Stemcap to the range with all proceeds going to the<br />

NZ Spinal Trust.<br />

A cycling accessory with a cause. Here is one of Hans's<br />

Stemcaps—he and his friends love theirs. Hans has one<br />

on his Road Bike, Mountain Bike and on his commuter<br />

bike (image right)!<br />

The NZST Stemcap on Hans's commuter bike.


SPINAL NETWORK NEWS 23<br />

All is for All<br />

Grace Stratton claims Supreme Award at Attitude Awards<br />

Grace Stratton celebrates winning the Supreme Award at the ACC Attitude Awards,<br />

with ACC Minister Carmel Sepuloni. Photo Credit: Attitude Awards.<br />

Grace Stratton, co-founder of All is for All,<br />

was announced winner of the prestigious<br />

Attitude ACC Supreme Award at the Attitude<br />

Awards in Auckland in December 2020. Now<br />

in its 13th year, the black-tie gala event<br />

celebrated the achievements and successes of<br />

New Zealanders in the disability sector.<br />

Auckland-raised Grace (20) co-launched All is for All, an<br />

accessible communications, media and talent agency,<br />

with her friend, Angela Bevan, in 2019.<br />

Grace, who uses a wheelchair, started the business<br />

because she understood the challenges of purchasing<br />

garments online, only to discover they aren’t<br />

purpose-built for disability. All is for All started as a<br />

company that sought to solve this simple problem for<br />

millions of people around the world by designing an<br />

accessible e-commerce space that reframes how designer<br />

garments are discussed.<br />

—Grace Stratton<br />

All is for All ensures<br />

disabled people are uplifted.<br />

It started in fashion because<br />

of fashion’s power to be a<br />

catalyst for change.<br />

It has now grown to help all kinds of businesses<br />

implement accessibility as a cornerstone of their work<br />

and communications; ensuring disabled consumers are<br />

spoken to, understood, valued and uplifted. All is for All’s<br />

work has challenged norms, improved communications<br />

and is about bringing accessibility into focus, without<br />

compromising aesthetics and innovation.


NEW ZEALAND SPINAL TRUST 24<br />

Bringing accessibility into focus, without compromising<br />

aesthetics and innovation, All is for All ensures people<br />

with disabilities can have both an experience of designer<br />

garments and a wardrobe which is accessible to them.<br />

The company now works with a variety of local designers,<br />

including Twenty-Seven Names, Stolen Girlfriends Club and<br />

Kate Sylvester, on inclusion and access within business, and<br />

customer experience through a disability rights lens.<br />

Grace’s achievements since launching All is for All are<br />

extensive. These include contracting more than 10<br />

models with disabilities, and working with over 20<br />

designers, showcasing at New Zealand Fashion Week<br />

2019, and providing consultation work for 18 people with<br />

disabilities in advisory roles for The Warehouse Group,<br />

Global Brands Group, Estee Lauder and more.<br />

Grace was a Young New Zealander of the Year finalist in<br />

2018, was named InStyle’s ’50 Badass Women for 2019’<br />

and is a full-time student at AUT, studying a double<br />

degree in law and communications.<br />

Attitude Trust Chairperson Dan Buckingham,<br />

commented on Grace’s win: “In lots of ways, it seems like<br />

Grace is only at the beginning of her journey. With so<br />

much more to offer, I’m certain she will wave the flag for<br />

disability high and proud for years to come. Grace stood<br />

out as the overall winner for a multitude of reasons, not<br />

least of all due to being able due to her ability to cut<br />

through and make a difference in a field rarely reserved<br />

for people who live with disability.”<br />

On accepting her award, Grace said: "What we do at All is<br />

for All is about creating space. It's not about me, or any<br />

one person, but the work we can achieve together. I think<br />

it's really important that we create bridges and<br />

understanding. We don't want people to be so afraid of<br />

saying the wrong thing that they say nothing at all."<br />

Principal sponsor, ACC’s Chief Executive, Scott Pickering,<br />

said this year’s finalists’ achievements were impressive:<br />

“Congratulations to Grace on her well-deserved win of<br />

both the Attitude Employee and Entrepreneur Award and<br />

the Attitude ACC Supreme Award for her work in<br />

encouraging and driving a more accessible and inclusive<br />

New Zealand. This year’s finalists have all made<br />

outstanding contributions to their communities—the<br />

disability community and New Zealand as a whole—and<br />

we are proud to celebrate their success with them.”<br />

Grace’s award closed an outstanding evening where 25<br />

individuals and organisations were recognised. The<br />

black-tie gala was hosted by TVNZ 1 News presenter,<br />

Simon Dallow, and saw performances by his daughter,<br />

Paris, and singer-songwriter Benny Tipene. Additionally,<br />

Delta Goodrem shared a special video performance of her<br />

hit song ‘Solid Gold’ ahead of her <strong>2021</strong> New Zealand tour.<br />

For highlights from the 2020 Attitude Awards visit:<br />

www.attitudeawards.org/2020-winners<br />

Chelsea Pita says: “Working with All is for All has been such<br />

an honour and privilege” Photo credit: captured by @hsburg<br />

for MONDAY Haircare campaign, makeup by @rae_makeup,<br />

styling + direction by @the_twenties_club.<br />

Chelsea Pita—The paraplegic who<br />

found herself through modelling<br />

How did you first get into modelling? Is it something<br />

you have always wanted to do?<br />

Modelling wasn’t something I was initially passionate<br />

about or something that I thought I could do because I<br />

portrayed myself as not being ‘model material’, however<br />

I always thought modelling looked fun and artistically<br />

beautiful. It is definitely something I enjoy and would<br />

love to continue. I’m just taking up as many<br />

opportunities as I can.<br />

What has it been like working with All is for All?<br />

Working with All is for All has been such an honour and<br />

privilege. When I first came across All is for All I was and<br />

still am in such awe of the work that they are doing and<br />

their goal of inclusion and bringing awareness and<br />

opportunities towards the disability community. The<br />

reason I made contact with Grace and the AIFA team was<br />

because I was at a point in my life where I felt a need for<br />

change and bring back some of that self-worth and<br />

confidence, I felt I lost after my SCI. It was definitely out<br />

of my comfort zone but I believed that this was what I<br />

needed and wanted to do. I believed in being part of the<br />

bigger picture which was to bring awareness and<br />

acceptance towards the disabled community and striving<br />

for more inclusion.


SPINAL NETWORK NEWS 25<br />

Are you excited about being part of increasing<br />

understanding around disability?<br />

I’m definitely excited about being part of increasing<br />

understanding around disability. Because we all live in<br />

such a stereotypical-minded society, it’s important to<br />

educate people about disability, develop empathy towards<br />

one another and try to break those barriers around<br />

accessibility and inclusion so we can all, disabled or not,<br />

try and live our life to the fullest.<br />

How did your injury occur?<br />

In January of 2018 I went swimming with my siblings and<br />

nephew. I decided to go and jump off a 10-15m high<br />

jumping cliff into the lake with my older brother and<br />

younger sister. Others were around jumping too. I<br />

remember jumping when it was clear for me to and as<br />

soon as I hit the water I couldn’t feel my legs. I had<br />

sustained an L1 Spinal Cord Injury.<br />

What advice do you offer to others who have sustained<br />

an SCI and are at the start of their journey?<br />

The biggest advice I could give to anyone who has a spinal<br />

cord injury and just starting out on this journey is to keep<br />

reaching out and stay in contact with those at the Spinal<br />

Unit (whether they are a staff member or a current or<br />

former patient) or even support groups through social<br />

media. You may feel lonely or lost or both in this journey<br />

like I did but more often than not someone out there<br />

knows exactly what you are going through and asking a<br />

question, any question or just asking for company is<br />

better than not asking at all. Find what you are passionate<br />

about and go for it. You may need to make a few<br />

adjustments but you are definitely more than capable of<br />

doing whatever you set your mind to. <br />

How hard was your rehab and your recovery?<br />

Rehab and recovery was difficult. I was 18 at the time of<br />

my injury and the youngest at the Spinal Unit during my<br />

time there, plus after leaving the Spinal Unit it became a<br />

very lonely journey because I didn’t know where to look<br />

for support or what to ask and talk about. It was a new<br />

journey and I just didn’t know how to navigate my way<br />

through this change in my life.<br />

Find what you are<br />

passionate about<br />

and go for it.<br />

—Chelsea Pita<br />

Chelsea Pita has found herself through modelling. Photo credit: Image for EveryHuman.com.au.


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NEW ZEALAND SPINAL TRUST 26<br />

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detachable shopping bag and backrest.<br />

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secured with the Lock Clamp for transport or storage.<br />

> The unique Edge Guard feature prevents the walker<br />

from catching on furniture legs and doorframes.<br />

> The Tilt Assist function gives the foot a wide area<br />

to step on and tilt the walker up to navigate kerbs.<br />

> The Ergo Grip makes it easier to stand from seated<br />

position.<br />

Visit our website for the full walker range and<br />

helpful accessories available.<br />

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Obi Independent<br />

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> With the touch of a switch Obi allows users to select between<br />

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> Obi increases independence, social interaction, and effective<br />

food capturing like never before!<br />

> Obi is perfect for eating out! Obi is portable, 3Kg and provides<br />

up to 3 hours of eating time per full charge.<br />

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The Vela Tango is a unique indoor<br />

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> The 20cm height adjustable by an<br />

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SPINAL NETWORK NEWS 27<br />

Telling it Like it is<br />

Teina Boyd’s column<br />

—Teina Boyd<br />

Not everyone around us is<br />

educated on “us”, judgement<br />

is just a thing we need to deal<br />

with sometimes.<br />

like, “Why do you have a bag of apple juice on your leg?”<br />

“Can I have some apple juice?” How do you tie your<br />

shoelace when your hands are so curly?”<br />

But that one repetitive question makes me cringe every<br />

time (I’m thinking of attaching a pre-recorded message to<br />

my chair so I can just press the button every time<br />

someone asks).<br />

Approached by a lovely elderly couple in the supermarket<br />

last week, I was asked “the question”. They seemed like<br />

good, honest people. So I gave an honest answer.<br />

I even said yes when they asked if they could pray for me.<br />

Teina with her son William. She says: “Life is what you make of it.<br />

Try and make the most of it”.<br />

Teina was a patient in the Burwood Spinal<br />

Unit six years ago. The down-to-earth<br />

Cantabrian was a recruit for the New Zealand<br />

Police when she fractured her neck at the C5<br />

vertebrae. It changed her life in a moment<br />

but she has never given up. Her honest<br />

reflections give us a real insight to living with<br />

a disability.<br />

So ... What happened to you?<br />

That question … That bloody question that comes so<br />

constantly. Whether it comes from a stranger in the<br />

supermarket, that childhood friend you run into in the<br />

street or just another curious child … it’s SUCH a<br />

Groundhog question.<br />

Funnily enough I enjoy the questions from children a lot<br />

more … They’re less articulate with their curiosity. Things<br />

Placing their hands on my knees and crouching down<br />

between the pumpkins and potatoes at Pak ‘n’ Save, they<br />

shared their prayers with me. Yes … okay … it got awkward<br />

when the husband got a bit more energetic, demanding<br />

the power of God into my legs with what looked to be<br />

some Zumba moves but hey … I was grateful for their<br />

effort ... for their aroha.<br />

I was, however, deflated when they made me so late to<br />

pick my son up from school that I had to leave without my<br />

groceries. Do people just assume I have nowhere to be and<br />

nothing to do, because of my disability?<br />

So, two days later, when asked the same question outside<br />

of the same supermarket, I was hesitant in answering.<br />

Glancing down at my hand controls to check the time, I<br />

knew I only had half an hour before I was due back at<br />

home for a Zoom meeting.<br />

Dilemma. Lie, tell a short white lie, brush it off and make<br />

it home for work on time? Or tell the truth and probably<br />

get stuck in a huge conversation about one of their<br />

disabled cousins who has been through “exactly what I’m<br />

going through”.<br />

With an internal sigh I use my teeth to pull my messily<br />

written shopping list out of my sleeve. Handing it to my<br />

support worker she gives me a wink as she grabs my purse.<br />

“Text me if you need anything else Tee”, as she heads into<br />

Pak ‘n’ Save with our canvas shopping bags.


NEW ZEALAND SPINAL TRUST 28<br />

—Teina Boyd<br />

Being in this wheelchair has<br />

taught me some lessons I<br />

never would have been lucky<br />

enough to learn had my life<br />

not taken this turn.<br />

So, while my support worker did our groceries, I sat<br />

outside and listened to this young guy’s story of how he<br />

shattered his vertebrae back in 2012, and through nothing<br />

more than his own willpower and hard work, he’s now<br />

walking and working—back at full health.<br />

(No mention at all of the amazing nurses, doctors, social<br />

workers, occupational therapists, physios, support<br />

workers, family and friends who no doubt provided<br />

massive support during this recovery ... it was ALL him).<br />

So, after 15 minutes of being encouraged to “just try<br />

harder” and demand my body out of its sleep, I was<br />

painfully regretting my choice to engage.<br />

“You just have to wake up in the morning, and want it<br />

more than anything else girl! Push through the pain and<br />

work for it!”<br />

I held my tongue with some difficulty, then asked him<br />

(when he was finished teaching me how to fix my<br />

spinal-cord injury), “So how damaged was your<br />

spinal-cord during your injury?”<br />

Long story short? It wasn’t. He broke two vertebrae and<br />

his spinal-cord got away scot-free.<br />

One word flashed through my mind.<br />

Uneducated.<br />

I won’t say miracles don’t happen, because they do.<br />

Occasionally. But do these idiots really think that we are<br />

rolling around in wheelchairs because we “don’t want it<br />

enough”?<br />

If that were really the case, and it was a matter of<br />

willpower and strength? I have a few friends in<br />

wheelchairs who would have grown wings and flown off<br />

long ago.<br />

So now the ball’s in my court, how do I reply to this<br />

without trampling on his positivity? Do I educate? Or do I<br />

allow him his ignorant bliss?<br />

Honesty, I resort to my natural tendency.<br />

Teina with her partner Bradley. She says: “Some people are not<br />

fortunate enough to have everything I do”.<br />

Smiling, I do understand his response… Some people are<br />

not fortunate enough to have everything I do.<br />

“Really. Without this wheelchair I wouldn’t have met<br />

some of my best friends, I wouldn’t have the amazing<br />

relationship I do with my son, I wouldn’t have found my<br />

dream job helping other people with disability and I<br />

wouldn’t have met my fiancé... if I could go back six years<br />

and do it all differently? I wouldn’t”<br />

I can see he doesn’t believe me.<br />

But I really don’t care.<br />

Seeing my support worker walking towards me with a<br />

huge smile ... laden with our bags of junk food, I’m excited<br />

to get back to my day. Home to see my workmates on<br />

Zoom before binging out with her, my support worker<br />

turned best mate, over the latest MAFS reunion.<br />

That’s a great Tuesday morning.<br />

Remember not everyone around us is educated on “us”,<br />

judgement is just a thing we need to deal with sometimes,<br />

and a little bit of gratitude and patience can go a really<br />

long way when dealing with it all.<br />

Love and light everyone xo <br />

“I’m really happy it worked out for you. For me? Being in<br />

this wheelchair has taught me some lessons I never would<br />

have been lucky enough to learn had my life not taken<br />

this turn.”<br />

He looks at me in disbelief, sincerely not believing what<br />

I’m saying.


SPINAL NETWORK NEWS 29<br />

What We’re<br />

Watching<br />

Crip Camp<br />

A Disability Revolution<br />

13+ Political Documentary<br />

Everyone can remember their first summer camp. Their<br />

first time away from Mum and Dad. Having fun with your<br />

mates and finding trouble until all hours of the night. It<br />

was awesome. Well, it doesn’t matter how good your first<br />

camp experience was, it won’t have been as formative or<br />

as life-changing as Crip Camp.<br />

This Netflix documentary, with former US President<br />

Barack Obama and former First Lady Michelle Obama, as<br />

the Executive Producers, captures an incredible period in<br />

history where things needed to change, and the camp was<br />

the catalyst.<br />

The film, directed by a former camper, Jim LeBrecht, and<br />

Nicole Newnham, shows that a Catskills summer camp<br />

for the disabled fostered a sense of community and<br />

creativity that fed directly into the American disability<br />

rights movement in the 1970s.<br />

People came to Camp Jened and they found themselves.<br />

Some of the campers deliver powerful lines to sum up<br />

their experience. “I wanted to be part of the world, but I<br />

didn’t see anyone like me,” one says. In the outside world,<br />

life was hard for disabled people and no one seemed to<br />

care. Many were sent to institutions and using public<br />

transport was not at option. It was a lonely existence. The<br />

movie sums up just how far we have come as a society in a<br />

short time, or more pointedly how shocking life was only<br />

50 years ago. But it was not like that at camp, here they<br />

could be normal. “It was allowing us to recognise that the<br />

status quo was not what it needed to be”.<br />

Crip Camp reminds us that<br />

anything is possible.<br />

Where Crip Camp excels is in the original vision of the<br />

camp in its heyday and the impact it had on these<br />

inquisitive teenagers and then the impact they would<br />

have on the world. It links the struggles of the disabled to<br />

other fights for civil rights.<br />

The final result is a moving documentary in an important<br />

time for disabled people’s rights. The ultimate message<br />

which Crip Camp delivers is that inspiration that begins<br />

in youth can lead to world-changing results. It reminds us<br />

that anything is possible. <br />

The camp was not a soft touch either. It was a time to<br />

learn to grow and to be pushed out of your comfort zone.<br />

As Lionel Je’Woodyard, a former counselor, explains,<br />

“You wouldn’t be picked to be on a team back home, but at<br />

Jened, you had to go up to bat.”


NEW ZEALAND SPINAL TRUST 30<br />

New<br />

Additions<br />

<strong>April</strong> <strong>2021</strong><br />

The Brain’s Way of Healing: Stories<br />

of Remarkable Recoveries and<br />

Discoveries<br />

by Norman Doidge, 2015<br />

The Brain’s Way of Healing describes<br />

natural, non-invasive avenues into<br />

the brain provided by the energy<br />

around us—in light, sound, vibration,<br />

and movement—that can awaken the<br />

brain’s own healing capacities<br />

without producing unpleasant side<br />

effects. Doidge explores cases where<br />

patients alleviated chronic pain;<br />

recovered from debilitating strokes,<br />

brain injuries, and learning<br />

disorders; overcame attention deficit<br />

and learning disorders; and found<br />

relief from symptoms of autism,<br />

multiple sclerosis, Parkinson’s<br />

disease, and cerebral palsy. We also<br />

learn how to vastly reduce the risk of<br />

dementia, with simple approaches<br />

anyone can use.<br />

Working with Muslim Clients in<br />

the Helping Professions<br />

edited by Anisah Bagasra and<br />

Mitchell Mackinem, 2019<br />

Working with Muslim Clients in the<br />

Helping Professions is a research<br />

publication that focuses on helping<br />

professionals in areas such as social<br />

work, human resources, counselling,<br />

nursing, and other related areas to<br />

understand pertinent issues that may<br />

impact their success when working<br />

with Muslim clients. Highlighting<br />

topics such as migration trauma,<br />

community health, and<br />

Islamophobia, this title addresses<br />

contemporary issues that impact the<br />

full and successful utilization of<br />

human services by Muslims living in<br />

non-Muslim majority countries. It is<br />

ideal for social workers, therapists,<br />

counsellors, human resource<br />

professionals, nurses, doctors,<br />

caregivers, medical professionals,<br />

mental health practitioners, life<br />

coaches, academicians, researchers,<br />

public health educators, and students.<br />

Dog’s Getting Fat: Living with<br />

Tetraplegia<br />

by Hamish Ramsden, 2020<br />

This book is a very personal account<br />

of Hamish's life as a tetraplegic<br />

without trying to be overly<br />

motivational. It has a subtle mix of<br />

humour which contrasts well with the<br />

traumatic theme of the book. It starts<br />

from the moment of his accident, on<br />

the family farm in Southern Hawke's<br />

Bay, New Zealand, in 1994.<br />

The story details his rehabilitation at<br />

the Burwood Spinal Unit, and his<br />

resettlement into his home<br />

environment. Nine years after his<br />

accident his life takes a dramatic turn,<br />

which brings new highs and new lows.<br />

Journals/magazines<br />

Dynamics for Human Health<br />

Vol. 7 issue 4 Dec 2020<br />

Forward UK SCI magazine<br />

<strong>Issue</strong> 160 Dec 2020<br />

New Mobility: Consumer Guide <strong>2021</strong><br />

<strong>Issue</strong> 327 Dec 2020<br />

Spinal Network News<br />

Vol. 23 no. 3 Dec 2020<br />

Sports’n Spokes: Rise of<br />

Adaptive Boxing<br />

Vol. 46 no. 6 Nov 2020


SPINAL NETWORK NEWS 31<br />

A Backpack, a Chair, and a Beard:<br />

The True Story of an Incredible<br />

Journey<br />

by Eamon Wood, 2020<br />

Eamon has been a paraplegic since<br />

the age of four—the result of a car<br />

accident. He found ways to give his<br />

wheelchair ‘wings’. He has<br />

represented New Zealand in<br />

wheelchair basketball and became<br />

the first person in a chair to complete<br />

an engineering apprenticeship. At the<br />

age of 28, he decided to travel the<br />

world with nothing more than a<br />

backpack and a guitar. He wheeled his<br />

way through cities and small towns<br />

and found himself.<br />

Spinal Cord Medicine<br />

3rd edition, edited by Steven<br />

Kirshblum and Vernon W. Lin, 2019<br />

Spinal Cord Medicine, Third Edition<br />

draws on the expertise of seasoned<br />

editors and experienced chapter<br />

authors to produce one authoritative,<br />

collaborative volume with the most<br />

up-to-date medical, clinical, and<br />

rehabilitative knowledge in spinal<br />

cord injury management across the<br />

spectrum of care.<br />

New and expanded content focuses<br />

on the significant changes in the<br />

epidemiology of traumatic injury, the<br />

classification of SCI, and the latest<br />

medical treatments of multiple<br />

medical complications.<br />

The Body Keeps the Score: Mind,<br />

Brain and Body in the<br />

Transformation of Trauma<br />

by Bessel van der Kolk, 2015<br />

Dr. Bessel van der Kolk, one of the<br />

world’s foremost experts on trauma,<br />

has spent over three decades working<br />

with survivors. In The Body Keeps<br />

the Score, he uses recent scientific<br />

advances to show how trauma<br />

literally reshapes both body and<br />

brain, compromising sufferers’<br />

capacities for pleasure, engagement,<br />

self-control, and trust. He explores<br />

innovative treatments—from<br />

neurofeedback and meditation to<br />

sports, drama, and yoga, that offer<br />

new paths to recovery by activating<br />

the brain’s natural neuroplasticity.<br />

Measuring Occupational<br />

Performance: Supporting Best<br />

Practice in Occupational Therapy<br />

3rd edition, edited by Mary Law,<br />

Carolyn Baum and Winnie Dunn, 2016<br />

Measuring Occupational<br />

Performance: Supporting Best<br />

Practice in Occupational Therapy,<br />

Third Edition summarizes the<br />

measurement tools needed to assess<br />

client occupational performance, to<br />

provide the best intervention, and to<br />

document the effectiveness of that<br />

intervention. These measurement<br />

tools are an elite group of tools<br />

carefully selected by the editors<br />

through a process of rigorous<br />

theoretical, clinical, and scientific<br />

reasoning.<br />

Occupational Therapy and<br />

Neurological Conditions<br />

edited by Jenny Preston and Judi<br />

Edmans, 2016<br />

Occupational Therapy and<br />

Neurological Conditions incorporates<br />

theoretical, clinical and research<br />

evidence to support occupational<br />

therapists in the management of<br />

people with neurological conditions.<br />

So that they can fully consider the<br />

physical, cognitive, emotional,<br />

psychological, and behavioural<br />

problems which may occur as a<br />

consequence of a neurological<br />

disorder and understand the impact<br />

of diagnosis from a person-centred<br />

perspective.<br />

All the listed items are available to<br />

loan from the <strong>Res</strong>ource Centre.<br />

We will post books to you!<br />

For all enquiries contact<br />

Bernadette Cassidy<br />

bernadette.cassidy@nzspinaltrust.org.nz<br />

or phone: 03 383 9484


NEW ZEALAND SPINAL TRUST 32<br />

Running for<br />

Those Who Can’t<br />

Red Bull’s Wings for Life World Run<br />

On the first weekend of May every year, The<br />

Wings for Life World Run is held around the<br />

globe. It’s a running competition, which has<br />

been staged since 2014, to raise funds for the<br />

not-for-profit foundation Wings for Life.<br />

The entry fee goes completely to the foundation who have<br />

the goal to find a cure for spinal cord injuries and<br />

paraplegia. The foundation supports research and studies<br />

on the spinal cord and spinal cord injuries.<br />

Wings for Life was established by two-time motocross<br />

world champion Heinz Kinigadner and Red Bull founder<br />

Dietrich Mateschitz in 2004. Founder Heinz is involved<br />

because his brother and his son, both motocross riders,<br />

are wheelchair users after sustaining serious injuries.<br />

Worldwide, millions of people are living with the impact<br />

of a spinal cord injury. In over half of cases, these<br />

injuries are caused by a traffic accident or a fall. They<br />

can affect anybody.<br />

The Wings for Life World Run is unique. People take part<br />

across the world at exactly the same moment, all<br />

connected by an App. People can therefore run together<br />

with thousands of others without needing to be together<br />

at a single location.<br />

Anyone aged 18 and over can take part. The past few<br />

events have seen a diverse field of participants. Taking<br />

part are runners and wheelchair users, beginners and<br />

professionals of all ages. This gives the Wings for Life<br />

World Run an incomparable atmosphere.<br />

There is no set distance. Instead, a moving finish line<br />

called a ‘Catcher Car’ pursues the participant at an<br />

increasing speed! When the Catcher Car catches the<br />

participant, their run is over.<br />

The App will keep the participant updated by telling<br />

them how far ahead they are and telling them when they<br />

are eventually caught. When the participant’s race is<br />

complete they’ll see their result on the Global<br />

<strong>Res</strong>ult List.<br />

The run also takes place in 35 locations around the world<br />

at the same time and is broadcast live on Red Bull TV.<br />

In its sixth year, Wings for Life World Run participants in<br />

New Zealand can also run together in Auckland, should<br />

the situation at the time allow this. The race starts at<br />

exactly 11pm.<br />

The Wings For Life World Run give participants the chance to run / wheel<br />

together with thousands of others around the world without needing to be<br />

together at a single location. Photo credit: Red Bull.<br />

How does it work?<br />

• Download the Wings for Life World Run App to your<br />

phone and register for 9 May <strong>2021</strong>.<br />

• You have the option of running individually, or you can<br />

join a nearby Organised App Run, should the situation<br />

at the time allow this.<br />

• You'll start at the same time as everyone else in the<br />

world and will be chased by a virtual ‘Catcher Car’ .<br />

• Your App will keep you updated by telling you how<br />

far ahead you are and telling you when you are<br />

eventually caught.<br />

• Then your race is complete and you'll see your result on<br />

the Global <strong>Res</strong>ult List.<br />

• It costs $34.95 to take part and this entry fee goes to<br />

the Wings for Life foundation. <br />

Find out more about the Wings For Life Run here:<br />

www.wingsforlifeworldrun.com


SPINAL NETWORK NEWS 33<br />

Burwood Academy of<br />

Independent Living Update<br />

Access to community support workers during hospital<br />

admission for people with spinal cord injury<br />

Our latest research to be published is “Access to<br />

community support workers during hospital<br />

admission for people with spinal cord injury: a<br />

pilot study.” Published in Spinal Cord Series<br />

and Cases, it was authored by Drs Jo<br />

Nunnerley, Rachelle Martin, Johnny Bourke,<br />

Matt Aldridge was the research assistant with<br />

lived experience and Ian Simpson who was<br />

the lived-experience advisor.<br />

The study evaluated a pilot project enabling people with<br />

spinal cord impairment (SCI) to have their support<br />

workers accompany them into a non-SCI specialist/public<br />

hospital (excluding ICU) to perform selected care. It<br />

involved interviews and focus groups with people with<br />

SCI, support workers, care agency staff, and hospital staff<br />

who participated in the pilot project.<br />

The pilot programme was launched by ACC as a result of<br />

the New Zealand National Spinal Cord Impairment Action<br />

Plan (2014-2019). Its aim was to optimise best possible<br />

health and wellbeing outcomes for people with SCI.<br />

One of its objectives was to “develop a process where a<br />

person with SCI could use their existing support workers<br />

to provide essential personal support”.<br />

It was important to evaluate that pilot programme to<br />

understand what worked and what didn’t, and that’s<br />

where the Burwood Academy study stepped in.<br />

Our report explains “the study focused on how the pilot<br />

project may have contributed to improved care for people<br />

with SCI when they were admitted to the hospital, and<br />

whether ongoing implementation was feasible.”<br />

All participants<br />

overwhelmingly endorsed<br />

the introduction of support<br />

workers in hospital to<br />

support people with SCI.<br />

The study recruited 25 participants including people with<br />

SCI (who fit certain criteria), hospital staff involved in the<br />

pilot, and care agency staff who completed the<br />

contingency plan. Data was collected through<br />

semi-structured in-depth interviews, in person or via<br />

Zoom/telephone, and two focus groups.<br />

Burwood Academy is committed to having people with<br />

lived experience (PLEx) involved in all our research, at<br />

every level. ACC developed questions that were then<br />

reviewed by our research team and our PLEx<br />

Consultation Network.<br />

“A lived experience advisor with SCI who was familiar<br />

with working with support workers provided input to all<br />

stages of the evaluation design, implementation and<br />

analysis process.”<br />

Because all of the participants with SCI had prior<br />

hospital admissions, they were able to compare their<br />

previous experiences with the admissions during the<br />

pilot programme. The research showed positive outcomes<br />

for the individuals as well as hospital nursing staff.<br />

“Having their regular support worker with them<br />

during admission to public hospital improved the<br />

SCI-specific care received. Support workers reduced the<br />

demand on hospital nursing staff who did not always<br />

have the time or specialist SCI knowledge to provide<br />

individualised care.”<br />

Support workers were able to advocate on behalf of<br />

their person and provide mental support within the<br />

ward environment.<br />

Some issues were identified particularly around health<br />

and safety requirements in the hospital, communication<br />

between hospital staff and patients and support<br />

workers—particularly because of privacy issues.<br />

“All participants overwhelmingly endorsed the introduction<br />

of support workers in hospital to support people with SCI.<br />

However, the advantages and disadvantages were<br />

different for the different participant groups.”<br />

We would encourage you to read the full report, including<br />

a table that outlines the advantages and disadvantages of<br />

each group.<br />

You can find the full article here:<br />

https://rdcu.be/cdQoF


NEW ZEALAND SPINAL TRUST 34<br />

Staying on Track Project<br />

One of the exciting BAIL projects underway in<br />

<strong>2021</strong> explores how telehealth might help<br />

provide accessible peer support for people<br />

living with spinal cord impairment (SCI) as<br />

they return home, and what such a programme<br />

might look like. The project, support by<br />

ANZCoS and the Health <strong>Res</strong>earch Council, is<br />

all about working with people with relevant<br />

experience to create a vision of the future we<br />

want. There is a strong component of<br />

networking with Māori within the project.<br />

We are now inviting people with lived<br />

experience to join the project—whether you are<br />

a person living with an SCI, support someone<br />

with an SCI, or work professionally in the area.<br />

If you might like to work alongside us to design<br />

a great service, please see the advertisement on<br />

the right. Or if you might be interested in<br />

taking part in a survey, to help us gain feedback<br />

on ideas as they develop, drop us a line at<br />

info@burwood.org.nz. <br />

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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<br />

providing advanced medical technology and state-of-the-art<br />

healthcare solutions. Today, those solutions include the sale and<br />

rental of power wheel chairs, manual wheelchairs, power assist<br />

and seating & positioning products.<br />

Access Community Health has been at the forefront of keeping<br />

people healthy and safe in their homes since 1927. Today our<br />

nationwide team of skilled nurses and 3,000 support workers make<br />

over three million visits per year, ensuring people can remain<br />

active and independent in their own homes and community.<br />

Rehabilitation<br />

Welfare Trust<br />

The Elizabeth Ball<br />

Charitable Trust<br />

Air <strong>Res</strong>cue Services Ltd<br />

Deluxe Box<br />

Riccarton Rotary<br />

Charitable Trust<br />

Crusaders<br />

Canterbury Masonic<br />

Charitable Trust<br />

Cube Design<br />

Healthcare NZ<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 />

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 on<br />

the red ‘membership’ button<br />

www.nzst.org.nz


Independence is a basic human right and for over 50 years<br />

Permobil has held fast to that belief. We are passionate<br />

about better understanding our users’ needs and<br />

improving their quality of life. Solutions we offer today in<br />

New Zealand cover a large range of brands and represent<br />

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With 3 branches, rental divisions and Territory Managers<br />

scattered throughout New Zealand, we are ready to be of<br />

assistance.<br />

E: sales.nz@permobil.com<br />

P: 0800 115 222<br />

www.permobil.co.nz

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