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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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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 />
Pegasus Carbon fibre Walker<br />
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> 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 />
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> The Ergo Grip makes it easier to stand from seated<br />
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Visit our website for the full walker range and<br />
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> Obi is perfect for eating out! Obi is portable, 3Kg and provides<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 />
market leading quality.<br />
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