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<strong>April</strong> <strong>2024</strong><br />
Volume 27 / <strong>Issue</strong> 1<br />
Te Tarahiti Manaaki Tuanui<br />
<strong>SNN</strong>Spinal Network News<br />
“I FELT LIKE CRYING I WAS SO<br />
HAPPY”—JAMIE ASTWOOD<br />
REVIEWS THE FOO FIGHTERS<br />
THE LAUNCH OF CHARLY<br />
THE CAMPERVAN<br />
SALLY BARKMAN ON<br />
TICKING OFF GOALS<br />
FROM HER CHAIR<br />
“An Incredible<br />
Adventure”<br />
George Thompson and<br />
Andrew Leslie—two<br />
tetraplegics walk the<br />
Abel Tasman track
NEW ZEALAND SPINAL TRUST 2<br />
Contents<br />
3<br />
Editorial<br />
Don’t take life for granted<br />
23<br />
Hamish Ramsden's Column<br />
How to grow a lemon tree<br />
5<br />
Supporting Positive Futures<br />
Hans Wouters—CEO NZ Spinal Trust<br />
24<br />
Cover story—A Remarkable Achievement<br />
Two tetraplegics take on the Abel Tasman track<br />
8<br />
A Moment in Time<br />
The launch of Charly the Campervan<br />
27<br />
Maz Quinn<br />
Back where he belongs after life-altering accident<br />
10<br />
What Mark Did<br />
Arapuke Awesome fundraiser in Palmy<br />
30<br />
Accessible Road Trip<br />
Waikato to the Bay of Plenty—part two<br />
13<br />
Planning for the Future<br />
What happens with ACC and NZ Super?<br />
33<br />
Spinal Cure Research<br />
The current status of spinal cure research<br />
16<br />
Sally Barkman<br />
Taking on life with a disability<br />
35<br />
Funders and Sponsors<br />
20<br />
“Times Like These”<br />
Jamie Astwood reviews the Foo Fighters gig<br />
EDITORIAL TEAM<br />
Peter Thornton (Editor)<br />
CONTRIBUTING WRITERS<br />
Peter Thornton<br />
Dr Bernadette Cassidy<br />
Hamish Ramsden<br />
Su Marshall<br />
Hans Wouters<br />
Jamie Astwood<br />
Christine Gold /<br />
Mario McMillian<br />
Dr Simon O’Carroll<br />
Bernadette Cassidy<br />
THANKS TO THE FOLLOWING<br />
FOR IMAGES IN THIS MAGAZINE<br />
Hans Wouters<br />
Su Marshall<br />
Simon Watts, BW Media<br />
Jeremy Brick, ACC<br />
Maz Quinn<br />
Bradley SG Creative<br />
Cory, NZ Surf Magazine<br />
Shane Wenzlick, Phototek<br />
Jamie Astwood<br />
Sally Barkman<br />
Jack Mapobpan,<br />
Maverick Studio<br />
Patron of the New Zealand<br />
Spinal Trust Trevor Harrison.<br />
SPINAL NETWORK NEWS is<br />
published by the NZ Spinal Trust<br />
Send your contributions to:<br />
The Editor SPINAL NETWORK NEWS<br />
c/- New Zealand Spinal Trust, Private<br />
Bag 4708, Christchurch 8140<br />
Tel: (03) 383 9484<br />
Email:<br />
peter.thornton@nzspinaltrust.org.nz<br />
Web:<br />
www.nzspinaltrust.org.nz<br />
Copy Proofing: Bernadette Cassidy<br />
and Su Marshall.<br />
Cover Photo: Great mates—Andrew<br />
Leslie and George Thompson<br />
say laughter got them through<br />
completing the Great Walk. Credit<br />
Jeremy Brick, 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 />
Don’t Take Life<br />
for Granted<br />
Peter Thornton<br />
Editorial<br />
In every corner of this<br />
place, you can hear it—<br />
the sound of happiness.<br />
—Peter Thornton<br />
They also say that absence makes the heart grow fonder.<br />
For the past two years we have missed camping here at<br />
Hahei Beach. We had a family crisis two summers ago and<br />
last year we refused to accept the reality that a cyclone<br />
was going to ruin our summer vacation. It did.<br />
The feeling of driving through the flooded<br />
campground—only a day and a half after we arrived and<br />
set up camp in the howling wind—was a sobering<br />
moment. As we left for home, with our kids forlorn, our<br />
gear soaked, and holiday in tatters, it was quiet in the car.<br />
No one had anything to say.<br />
But we are back. And I cannot tell you how good it is to be<br />
here. It’s not often that the holiday lives up to the picture<br />
on the postcard, but this time around our holiday was as<br />
advertised, perhaps even better. This place is paradise.<br />
HAPPY TIMES —My family at our favourite place, Hahei Beach.<br />
They say a picture is worth a thousand words<br />
and well that feels about right here. As we<br />
drive through the gates of the Hahei Beach<br />
Resort with our caravan in tow, we pull up to<br />
the empty campsite.<br />
I say to my kids. “Remember that picture guys. The<br />
picture of our site empty as we pack up and leave for<br />
another year… it will be over before you know it, so make<br />
the most of every day here.”<br />
That image is a fitting metaphor for life in a moment. All<br />
of the things we look forward to, plan for, dream about,<br />
and hang our hopes on for a better day, well they come,<br />
and they go.<br />
All that is left is the shape of our caravan and awning where<br />
it has killed the grass, and the special memories we carry<br />
with us for another year. And what a special time we had.<br />
I can’t describe the luminescent, turquoise of the ocean in<br />
a way that does it justice. The rumbling of the waves<br />
pounding on the beach, the joy on the kids’ faces as they<br />
boogie-boarded for the first time, the walk down the road<br />
for our daily real fruit ice cream, the first sip of an icy-cold<br />
pint of Hazy IPA at the campground bar, the million stars<br />
that completely covered the breadth of the sky at night… I<br />
could go on.<br />
There are a thousand reasons why I love this place and I<br />
am so happy I could cry.<br />
Perhaps best of all, ahead of all those thing, I walk<br />
through the dark maze of the campground with a<br />
bucket-load of dishes, and I stop for a moment. Just to<br />
listen. It’s magic. In every corner of this place, you can<br />
hear it—the sound of happiness.<br />
I have missed hearing that. I realise that I am not alone.<br />
Older folk laughing and bantering over a game of 500,<br />
teenagers who still have plenty to learn, trying to one-up<br />
each other in a haphazard drinking game, young couples<br />
sharing a quiet glass of wine in the golden silence of their<br />
kids sound asleep, and finally the waves alongside our<br />
campsite that just makes us feel like we are home.<br />
The two weeks of sun and good times we had over our<br />
holiday was a much-needed tonic for our mental health.
NEW ZEALAND SPINAL TRUST 4<br />
How often do we stop<br />
and realise just how<br />
good we have it?<br />
—Peter Thornton<br />
More than that, it is has given me another great reminder<br />
of the need to be present.<br />
And the break has given us a chance to recharge, reflect<br />
and reconnect. It has given us the space to experience all<br />
of those good things again.<br />
My kids have had the best holiday ever and I am proud to<br />
have given them that experience. I think about my<br />
parents and the many magical holidays they gave me.<br />
My siblings and I, we just took it all for granted.<br />
That is human nature—we find it so easy to take things<br />
for granted.<br />
But how often do we stop and realise just how good we<br />
have it? How often do we get away from all of the busyness<br />
and stress of life and connect with each other and just<br />
listen to the world around us?<br />
Not often enough.<br />
Before our holiday my wife bought me a book from a<br />
second-hand bookshop. It was called Stronger—Fighting<br />
Back After the Boston Marathon Bombing and for the<br />
duration of our holiday I couldn’t put it down. I love books<br />
like this—an uncensored account of events and the words<br />
stayed with me long after I turned the final page.<br />
PARADISE—After two summers of rough weather,<br />
the sun and good times were a welcomed sight.<br />
The autobiography—written by Jeff Bauman—takes you<br />
back to that horrific day in 2013 when terrorists detonated<br />
a bomb at the finish line which killed three people and<br />
seriously injured many more.<br />
Jeff was one of them, losing both of his legs in the blast<br />
and was lucky to survive. His story is a compelling and<br />
honest read that describes in detail the pain and<br />
heartbreak of the event, and his gruelling rehabilitation<br />
to try to walk and have a ‘normal’ life again.<br />
There were many moments when I was close to tears as<br />
you feel like you are right there in the hospital ward with<br />
him coming to terms with his new reality or struggling to<br />
take his first steps in the gym.<br />
Jeff never gives up. He never complains and he never<br />
takes what he has for granted.<br />
It took a life-changing event for him to get to that place,<br />
but with every fibre in his being he wants to live a full and<br />
exciting life. And the cast of hundreds in his support crew<br />
help him achieve that dream.<br />
Reading his book made me think of all the people in our<br />
spinal-impaired community. Whatever stage people are<br />
at, the courage and determination to make the most of<br />
their life and not take it for granted is a common and<br />
unifying bond. It may take some time to get to that place,<br />
but they will get there.<br />
The day we have been dreading has arrived.<br />
We are pulling out of the campsite and the shape of our<br />
caravan and awning is the final memory of an<br />
extraordinary time. It will go and the next people will<br />
come and write their chapter.<br />
INSPIRING—Jeff Bauman’s book: “There were many moments when I was<br />
close to tears as you feel like you are right there in the hospital ward with him.”<br />
It’s a fitting reminder and an image that stays long in the<br />
mind. We will be back, but life doesn’t just happen on<br />
holiday. Don’t take it for granted. Before you know it,<br />
these magical days will be gone for good.
SPINAL NETWORK NEWS 5<br />
Supporting<br />
Positive Futures<br />
Hans Wouters<br />
CEO’s Column<br />
POSITIVE—The team at the NZ Spinal Trust is determined to find the funding to support the next chapter of Peer and Whānau Support.<br />
Are you kidding me?<br />
I am sitting in a car in central Napier desperately trying to<br />
get good internet so I can clearly hear the news ACC<br />
Portfolio Manager and an ACC executive are delivering. I kill<br />
the video and go on audio only, however the zoom call is<br />
stopping, starting, buffering and doing everything but give<br />
me a calm place to receive the shocking news that: “ACC will<br />
not be funding Peer and Whānau Support beyond the pilot”.<br />
Come 31st October <strong>2024</strong>, ACC will have funded over a<br />
three-year period, the most significant development in<br />
Peer Support for New Zealanders with a spinal cord<br />
impairment for decades.<br />
There have been many benefits to come from this period<br />
including the bringing together of NZ Spinal Trust and<br />
Spinal Support NZ to develop a nationwide network and a<br />
strengthening of our in-service Peer Support.<br />
That is just the benefit to our two organisations however<br />
when we consider the changed lives, (remember Terry<br />
from Palmerston North in our December issue—see photo of<br />
Terry and Henry on the next page), and the many, many<br />
others who at times of great need in their lives have found<br />
a strong ally, confidante, empathy from within our team<br />
of dedicated Peer Support coordinators, we are reminded<br />
how important this work is.<br />
—Hans Wouters, CEO NZ Spinal Trust<br />
We will carry on,<br />
of that there is no doubt.<br />
We will carry on, of that there is no doubt. How we do it is<br />
at the forefront of our minds right now and despite the<br />
large funding hole ACC leaves, we have discovered that<br />
developing our nationwide network of staff and<br />
contractors has created some exciting potential<br />
opportunities beyond the ACC funding.<br />
The rain started falling as I sat alone in the car in Napier<br />
soaking in the ACC news. My disappointment was fleeting<br />
as I could not help but feel incredibly grateful to ACC and<br />
the many staff there who have joined us to develop Peer<br />
Support across the entire country.<br />
You see it is not just the three years of funding that has<br />
brought us to this point, it is hundreds if not thousands of<br />
hours of work, from too many people to mention<br />
beginning with the incredible Chris Howard-Brown, the<br />
mastermind behind the Spinal Cord Impairment Action<br />
Plan 2014–2019.
NEW ZEALAND SPINAL TRUST 6<br />
MATES—Terry Fage (right) got huge support from his good mate Henry Matthews in the Peer and Whānau Support programme. It changed his life.<br />
Objective 6 of the action plan was very simple and clear.<br />
"Develop a nationally consistent framework for providing<br />
sustainable peer support services." We have done this,<br />
and ACC have played a large hand in it.<br />
Currently Andrew Hall in Christchurch and Brendan<br />
Tourelle in Auckland are holding the baton superbly and<br />
Peer Support continues to be effectively delivered across<br />
the entire nation. So we have a head start with our service<br />
and we intend to capitalise on that and take no backward<br />
steps. Our amazing team is as motivated and confident as<br />
ever and I look forward to updating you in the next<br />
edition on how we are cementing in "sustainable peer<br />
support services" from objective 6.<br />
One of the wonderful aspects of the role of CEO is being<br />
on the receiving end of incredible generosity and being<br />
the lucky person that gets to say "thank you"—that's what<br />
had brought me to Napier.<br />
—Hans Wouters, CEO NZ Spinal Trust<br />
The rain started falling as I<br />
sat alone in the car in Napier<br />
soaking in the ACC news.<br />
In 2018, Sam Kirk had a terribly serious motor vehicle<br />
crash and he and his family very unexpectedly turned up<br />
to the Burwood Spinal Unit. Three months later Sam was<br />
discharged, and he and the family were so grateful for our<br />
support during this difficult time for young Sam that in<br />
2020 his Dad decided to raise some money for us.<br />
My oh my, Wayne raised over $23,500 on his mountain<br />
bike as he rode 3,000km in 27 days; the entire length of<br />
NZ on a mountain bike—through rain, sunshine, shingle,<br />
wind, a dislocated shoulder and Covid lockdown… what<br />
an incredible effort and what an incredible result.<br />
With Wayne and Sam working hard in Napier it became a<br />
protracted exercise to shake their hands and say thank<br />
you but we found a way. Sam is back on track, looking and<br />
sounding fantastic and he and his Dad have big plans for<br />
their family business. It was a complete joy to see them<br />
both, sense their gratitude and shake their hands—it is<br />
never too late to say thank you.<br />
THANKS—Hans presenting the “Fundraiser Fun Supreme Award”<br />
to Wayne and Sam Kirk.<br />
As this first edition for <strong>2024</strong> drops we want to thank you<br />
for your support, encouragement and donations last year<br />
and look forward to keeping you informed on how the<br />
NZ Spinal Trust services that you support and perhaps<br />
receive are doing in the year ahead. We have a<br />
tremendous challenge ahead of us to secure ongoing<br />
funding for the nationwide Peer Support service that<br />
we have worked so hard to establish and we have a<br />
solid plan to catch the shifting breeze towards<br />
true sustainability.
SPINAL NETWORK NEWS 7<br />
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NEW ZEALAND SPINAL TRUST 8<br />
The Launch of Charly<br />
the Campervan<br />
A momentous occasion for New Zealand’s disabled community.<br />
BIG MOMENT—The cutting of the ribbon to launch Charly the Campervan. Credit: Jack Mapobpan, Maverick Studio.<br />
Charly the Campervan is here and ready for<br />
your use. We were at the launch of New<br />
Zealand’s first accessible caravan in Auckland<br />
in January this year to celebrate the occasion.<br />
It was a huge moment for the disabled community<br />
involving a huge amount of work to make it possible.<br />
Designed and built by ACM motorhomes with the<br />
assistance of wheelies, Charly makes the accessible<br />
adventure all about the fun and not the logistics.<br />
Charly—which means “free man” or “valiant”—will give<br />
disabled New Zealanders a holiday option they never<br />
had before.<br />
For CatWalk Founder Catriona Williams, who led the<br />
creation of Charly, it was a hugely proud and significant<br />
moment. “It is a $450,000 vehicle, and it is pretty schmick<br />
—I make no apologies for that,” she says proudly.<br />
“Because I think we're all short on holidays. When we do<br />
take one, we want it to be special.”<br />
Charly’s design and manufacture was funded by four very<br />
generous $100k donations. These donors were Sitipek,<br />
Hugo Charitable Trust, Greenstone Partner and an<br />
anonymous party. They are known to Charly as the<br />
Awesome Foursome.<br />
“We want Charly to be as accessible as possible,” says<br />
Catriona. “I really hope people treat it as their own and<br />
look after it so that the next person gets to enjoy it as well.<br />
“We want as many people as possible to enjoy Charly.<br />
And the reality is if they do, and it gets used, maybe we'll<br />
fund another one. The target to reach is 180 nights for<br />
the first year. And if it reaches more than that, that will<br />
be fantastic.”
SPINAL NETWORK NEWS 9<br />
BIG NIGHT—TVNZ’s Toni Street hosted the event that saw<br />
many from our community come out to mark the occasion.<br />
Credit: Jack Mapobpan, Maverick Studio.<br />
FULLY ACCESSIBLE—Sally Barkman checking out the state of<br />
the art design. Credit: Jack Mapobpan, Maverick Studio.<br />
INSIDE CHARLY—The first accessible campervan is world class. Credit: Jack Mapobpan, Maverick Studio.<br />
More ways to enjoy Charly<br />
Win One of Four Weeks<br />
Buy a Charly Voucher<br />
MANY HANDS—It took a lot of people coming together to create Charly.<br />
Credit: Jack Mapobpan, Maverick Studio.<br />
For more information on hiring Charly the Campervan visit:<br />
www.milnermobility.co.nz/charly-campervan-rental
NEW ZEALAND SPINAL TRUST 10<br />
What Mark Did—<br />
Arapuke Awesome<br />
A bunch of likely lads were back at it, supporting the Trust in<br />
Palmerston North.<br />
HUGE EFFORT—These lads put a lot of blood, sweat and tears into their fundraiser.<br />
In 2022 an awesome group of blokes—Mark,<br />
Brenton, Chris, Dave, Andy, and Jayden—<br />
decided to support the New Zealand Spinal<br />
Trust by riding the tracks of the Arapuke<br />
Mountain Bike Park for a 24-hour marathon.<br />
The ride included three teams of two, riding for an hour at<br />
a time, on rotation. They started at 10am on Saturday and<br />
went through until 10am Sunday.<br />
You have to be a special kind of ‘passionate’ to ride around<br />
a mountain bike track through the night—and in pouring<br />
rain no less. But to do it again? Bonkers! And yet this<br />
group took on the Arapuke Awesome 24-Hour Bike<br />
Marathon again over Labour Weekend in 2023.<br />
Their madness was rewarded this time around with<br />
the sun making a huge difference compared to the<br />
constant heavy rain that hit them for the entirety of the<br />
inaugural ride.<br />
“I do think there was a bit of sympathy for us because we<br />
were riding not just for 24 hours, but for 24 hours in<br />
torrential rain,” laughs Mark Glentworth, one of the<br />
—Su Marshall, NZST fundraising manager<br />
They may be crazy, but<br />
we love their enthusiasm<br />
and determination.<br />
organisers of the fundraiser. “Those dark hours, they<br />
dragged, but everyone enjoyed it and saw the purpose of it.”<br />
In 2023, they achieved their goal of raising more than<br />
$10,000 for the NZ Spinal Trust.<br />
“They may be crazy, but we love their enthusiasm and<br />
determination,” says Su Marshall, the NZST fundraising<br />
manager. “They even let Hans join them again. We can’t<br />
thank them enough for this support.”<br />
Mark says they always wanted to give back to the NZ<br />
Spinal Trust after the incredible support they received<br />
when Jayden was a patient at the Burwood Spinal Unit<br />
five years ago.
SPINAL NETWORK NEWS 11<br />
FULL CIRCLE—After being a patient of the Burwood Spinal Unit when he was 15, Jayden Glentworth is now supporting the NZST in this annual fundraiser.<br />
“As a family, immediately after Jayden’s accident, there<br />
were so many stages and emotions that we needed to<br />
process,” says Mark. “The Spinal Trust gently helped us<br />
navigate all of those areas with amazing care and<br />
support. This is a small way that we can give back.”<br />
The Arapuke Trails were a fitting location for the<br />
fundraiser as it was the scene of Jayden’s crash in 2019.<br />
And the local media got behind the event—a preview of<br />
the Arapuke Awesome fundraiser ran on the front page of<br />
the Manawatu Standard, and Jayden featured in an<br />
interview with More FM Manawatu.<br />
Hans says it was special seeing a great group of blokes roll<br />
up their sleeves and make the sacrifice again for the NZ<br />
Spinal Trust. “We are hugely grateful to the guys for their<br />
time and efforts,” says Hans. “The weekend in Palmy was<br />
full of plenty of competition, camaraderie and banter, and<br />
They achieved their goal of<br />
raising more than $10,000<br />
for the NZ Spinal Trust.<br />
behind all of the fun there was a very important cause<br />
that they are supporting.”<br />
Hans says the New Zealand Spinal Trust has three main<br />
functions; providing peer support for new patients from<br />
people with experience of spinal cord impairments;<br />
vocational rehabilitation for getting people back to work;<br />
and providing information and resources for people with<br />
spinal injuries.<br />
“It’s mentally tough for everyone when they have a spinal<br />
cord impairment,” says Hans. “It’s a matter of how long it<br />
remains difficult. That’s very much our role to support<br />
them through those days, especially the darkest times.<br />
“We’ve got many people we’ve supported who have been<br />
exactly where new patients are. The vast majority of<br />
people come out of the darkness into the light, and they<br />
flourish again in their life and carry on. Jayden is a good<br />
example of that.”<br />
KNACKERED—24 hours of riding was just<br />
a bit too much for our CEO Hans Wouters.<br />
The Arapuke Awesome lads are planning on doing it all<br />
again on Labour Weekend in <strong>2024</strong>.
NEW ZEALAND SPINAL TRUST 12<br />
Break free<br />
with Infyna Chic TM intermittent catheters<br />
Michelle used to feel embarrassed by lingering<br />
odours after self-catheterising – but not anymore...<br />
Infyna Chic catheter case has an air-tight seal and is proven not to<br />
leak or smell. It’s freed me so now I can self-catheterise fearlessly.”<br />
Michelle, SCI, Infyna Chic intermittent catheter user<br />
For more information please visit:<br />
hollister.co.nz/breakfree<br />
Scan to visit website<br />
The testimonials, statements and opinions presented are applicable to the person depicted. These testimonials are representative of that person’s experience, but the exact results and experience will be unique and individual<br />
to each person. The testimonials received compensation from Hollister Incorporated. Prior to use of Infyna Chic catheters, be sure to read the Instructions for Use for information regarding Intended Use, Contraindications,<br />
Warnings, Precautions, and Instructions. Hollister, the Hollister logo and Infyna Chic are trademarks of Hollister Incorporated. © <strong>2024</strong> Hollister Incorporated. ALL-02672. March <strong>2024</strong>.<br />
Empowering women to live life, their way
SPINAL NETWORK NEWS 13<br />
Planning for the Future<br />
When you hit 65 what happens? We talk to a couple of people who have<br />
different expectations and experiences with NZ Super and ACC.<br />
BEING AWARE—Keith says: “Over the 37 years that I have been in a chair mixing with other SCI<br />
people several of them weren’t aware that ACC will stop income related payments when they hit 65.”<br />
Typically, when we hit the age of 65, we<br />
start to consider whether to retire or<br />
continue working. It’s something we tend to<br />
put off thinking about while we’re young,<br />
but with many of us aware the New Zealand<br />
Superannuation may not be enough to live<br />
on it’s important to start planning early.<br />
You need to prepare for<br />
life without ACC income<br />
related earnings.<br />
—Keith Jarvie<br />
For people with SCI, who are receiving weekly<br />
compensation from ACC, understanding what will<br />
happen after the age of 65 is even more important.<br />
ACC strongly encourages their clients who are getting<br />
weekly compensation and nearing the age of 65 to talk<br />
with them about their circumstances. For most clients,<br />
this means their weekly compensation will stop at 65<br />
and they will take up superannuation payments.<br />
What happens to your weekly compensation when<br />
you reach 65 but are still working?<br />
Once you reach 65, you’re no longer entitled to weekly<br />
compensation, even if you’re still working.<br />
The exception to this is if your SCI occurred at age 64,<br />
which then entitles you to weekly compensation for up to<br />
two years, whether you’re working or not.
NEW ZEALAND SPINAL TRUST 14<br />
In a situation where the person is the spouse of a<br />
deceased family member, they are eligible to receive<br />
weekly compensation for a five-year entitlement period.<br />
The timeframe may be longer if the spouse is caring for<br />
children under 18 or other dependents.<br />
The <strong>SNN</strong> recently chatted to Keith Jarvie about<br />
his experience.<br />
How did you prepare for when you reached 65 and<br />
would no longer receive ACC compensation?<br />
“I was fortunate as I had been an investment advisor<br />
before my accident and was aware of the importance of<br />
preparing for retirement.<br />
“It is very expensive living with a disability and while<br />
ACC covers most of the injury related expenses, it doesn’t<br />
cover all of them, so you need to prepare for life without<br />
ACC income related earnings.”<br />
Talk to your Case/Claims Manager<br />
Keith received a letter approximately three months<br />
before ACC stopped his income related earnings<br />
payment. His case manager followed up with a phone<br />
call to make sure he had received the letter and was<br />
aware of the upcoming change.<br />
How was the transition from weekly compensation to<br />
NZ Super?<br />
“One week I was receiving 80 percent of my pre-accident<br />
earnings and the next week I wasn’t. It was a significant<br />
drop in income.”<br />
People should start<br />
putting aside a percentage<br />
of their income related<br />
earnings into a KiwiSaver<br />
account straight away.<br />
—Keith Jarvie<br />
What advice would you give to other people with SCI<br />
who are about to turn 65?<br />
“Hopefully most people are aware that there will be a change<br />
to the weekly comp once they turn 65 and be prepared.<br />
However, over the 37 years that I have been in a chair<br />
mixing with other SCI people several of them weren’t<br />
aware that ACC will stop income related payments when<br />
they hit 65.<br />
We all need to be prepared for a loss or reduction in<br />
income and have things set up like a KiwiSaver account<br />
and if possible, disablement insurance.”<br />
Keith recommends people should start putting aside a<br />
percentage of their income related earnings into a<br />
KiwiSaver account straight away. ACC only pay 80 percent<br />
of your pre-accident wage and they don’t contribute to a<br />
KiwiSaver account. If you return to work your employer<br />
will then contribute to your KiwiSaver. It is up to you to be<br />
proactive and start saving money yourself.<br />
Some people will already have a KiwiSaver account and<br />
their employer would have been contributing to that<br />
account as well as the government who pay 50 cents for<br />
every dollar you contribute to your own KiwiSaver, up to a<br />
maximum of $521.43 each year.<br />
“KiwiSaver is a great scheme and the earlier you start<br />
contributing the better. You will never get a better interest<br />
rate. In Keith’s view, KiwiSaver should have been made<br />
compulsory when it was first set up. Then all of New<br />
Zealand would be in a better position financially.”<br />
What happens to your ACC rehabilitation expenses?<br />
It’s important to note that ACC will continue to assist with<br />
rehabilitation expenses, wheelchair maintenance, seating<br />
adjustments, transport needs, pharmaceuticals,<br />
consumables, and self-management of the care package<br />
once you turn 65.<br />
The other side of the coin—Mike Rowley’s experience<br />
Mike’s situation was more complicated—the transition to<br />
NZ Superannuation happened at the same time his<br />
marriage was ending—due to the combined stresses<br />
associated with having an SCI and increasing reliance of<br />
family having to provide unpaid care by ACC.<br />
SUPPORT—Mike says: “It’s important to know that after you turn 65,<br />
ACC continues to pay for carers, consumables and medical costs.”<br />
He and his wife parted company and sold the family<br />
home. He then had to get a mortgage to buy a house.
SPINAL NETWORK NEWS 15<br />
He now lives on a pension and has a mortgage of about<br />
$180,000. At the beginning his fixed rate came to an end,<br />
which caused a 3 percent increase for 18 months, on top of<br />
huge rate and insurance increases. His fixed housing<br />
costs are now up by more than $100 a week.<br />
“I was definitely aware that ACC weekly compensation<br />
would end when I turned 65, I did contact my case<br />
manager in case I was missing something, but sadly that<br />
was not the case,” says Mike.<br />
“Fortunately, I had been warned in advance that I needed<br />
to make an appointment with Work and Income New<br />
Zealand (WINZ) at least two months prior to avoid long<br />
payment delays and to discuss entitlements. I did some<br />
research beforehand and learned that there are housing<br />
and disability benefits available. This was important as<br />
the case manager I was assigned to did not disclose<br />
entitlements and doubled down on it when challenged so<br />
I requested a senior manager to sort it out.<br />
“WINZ have an arbitrary figure of a maximum of $8000<br />
in savings to be eligible for any top ups. I had just cashed<br />
out my Kiwi Saver of about $17000, so I paid $9000 off my<br />
mortgage to qualify.<br />
—Mike Rowley<br />
It is extremely important<br />
to begin the process at least<br />
two months ahead of time.<br />
“It is extremely important to begin the process at least<br />
two months ahead of time to get all your ducks in a row.<br />
Now that I am dealing with my new increased costs, I am<br />
fortunate to have accumulated possessions I can sell off<br />
which helps, along with very frugal living, no holidays, no<br />
travel, no meals out means that I am managing to get by.”<br />
After you turn 65, ACC continues to pay for carers,<br />
consumables and medical costs. In other words,<br />
everything but the weekly compensation continues<br />
unchanged.<br />
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NEW ZEALAND SPINAL TRUST 16<br />
Taking on Life After<br />
a Disability<br />
Sally Barkman likes to look forward and focus on what she can do,<br />
not what she can’t.<br />
EQUITY —Sally says: “One in four New Zealanders lives with a disability and we need to be recognised. We don’t want special treatment.” Credit: BW Media.<br />
Eight years ago Sally Barkman was paralysed<br />
from the chest down in a freak accident.<br />
But the Auckland woman refused to give up<br />
her active lifestyle and is living life to the<br />
full. She shares her story to help others on<br />
their journey.<br />
“Just because my legs don’t work, that doesn’t mean<br />
I can’t take part in fun things anymore.”<br />
Sally’s life once revolved around being active on her feet.<br />
A fitness fanatic, she competed in triathlons, marathons<br />
and long-distance swimming. But that came crashing to a<br />
halt in the early hours of New Year’s Day in 2016.<br />
Sally was biking back to a holiday home in Wanaka and<br />
didn’t see a culvert in the darkness. All of a sudden, she<br />
was lying in the water and couldn’t feel her legs.<br />
You have two choices—<br />
you can either curl up and<br />
think, ‘woe is me’ or just<br />
get on with things.<br />
—Sally Barkman<br />
“Even though it was New Year’s, I wasn’t drunk—but I<br />
wish I had been,” she laughs. “Then I probably would’ve<br />
fallen differently or wouldn’t have been riding my bike in<br />
the first place.”<br />
She was taken to hospital and the scans revealed she<br />
would never walk again.
SPINAL NETWORK NEWS 17<br />
I see my job as a privilege,<br />
people let me in at their<br />
darkest time.<br />
—Sally Barkman<br />
me’ or just get on with things. Being a mum, I didn’t have a<br />
choice. I had to get home to be a mum for my son Josh, who<br />
was just turning 13, and be there for my husband.”<br />
THEN AND NOW—Sally Barkman after competing in an in a<br />
triathlon event, and the day after her accident in hospital.<br />
“That took a long time to sink in,” says Sally, who’s now<br />
54. “It was very difficult to come to terms with the fact I<br />
wouldn’t be able to do some of the things I used to love<br />
doing. I just wasn’t made for being in a wheelchair.”<br />
Overcoming adversity with a positive mindset<br />
Sally is able to pursue her sporty lifestyle after<br />
adopting a relentlessly positive attitude, despite her<br />
challenging situation.<br />
“It’s not all rainbows and unicorns,” she admits. “But you<br />
have two choices—you can either curl up and think, ‘woe is<br />
The support of her husband Scott, of 33 years, and an<br />
“amazing” network of friends and wider whānau, has<br />
played a big role in helping foster that positive mindset.<br />
ACC has also been a key part of her recovery—offering<br />
crucial support, including the wheelchair, a hand cycle,<br />
orthotics, surgeries, housing modifications and home<br />
help. They also provided a Training for Independence (TI)<br />
service, which has helped Sally achieve her goal of<br />
swimming by herself. She now swims 3km in a pool twice<br />
a week and has just started swimming at the beach.<br />
The hand cycle has made her even more independent,<br />
and she can be seen most mornings cycling along<br />
Auckland’s waterfront near her Kohimarama home.<br />
“It’s great I can do everything by myself,” she says.<br />
“It’s still not any easier but, as time’s gone on, I’ve gotten<br />
better at living this life.”<br />
POSITIVE—Sally has adopted a relentlessly positive attitude. “It’s not all rainbows and unicorns,” she admits. Credit: BW Media.
NEW ZEALAND SPINAL TRUST 18<br />
DRIVEN—Most<br />
mornings you’ll<br />
see Sally cycling<br />
along Auckland’s<br />
waterfront near her<br />
Kohimarama home.<br />
Credit: BW Media.<br />
Achieving goals from her wheelchair<br />
During her moments of despair, Sally would have found it<br />
hard to imagine one day taking part in Round the Bays<br />
Fun Run. In March, Sally completed it for the second<br />
time, as part of the ‘Wheelie Awesome’ team of<br />
wheelchair users and friends and family.<br />
One of the country’s most iconic events, Round the Bays<br />
takes place every year on Auckland’s picturesque<br />
waterfront, the stunning course winding along the<br />
harbour for 8.4km. Sally completed the course in 1:04:15<br />
in the cool and wet conditions.<br />
“It’s such a cool day and being there shows that people<br />
like me can take part. I love how everyone is of different<br />
ages and abilities and they're all out there doing it” Sally<br />
says. “There’s a lot of stigma about people in wheelchairs<br />
and with disabilities. So, I think being visible and taking<br />
part in things like Round the Bays shows we’re all<br />
human—we just do things differently.”<br />
Helping others in their darkest time<br />
Aside from being an inspiration herself, Sally is using her<br />
experience to help others.<br />
Before the accident, she was a full-time mother, having<br />
previously worked as a chef. She now works for Spinal<br />
Support New Zealand, which is based at the Auckland<br />
Spinal Rehabilitation Unit in Ōtara. Her role is in Peer<br />
Support to mentor recently injured people. Sally enjoys<br />
helping people adjust to their new life in a wheelchair.<br />
“I see my job as a privilege, they let me in at their darkest<br />
time and I get to be part of their journey—that’s special.”<br />
Some of the people she’s helped joined her ‘Wheelie<br />
Awesome’ team for Round the Bays.<br />
“If people can see we’re out there doing things, especially<br />
young people, hopefully we can break down some of that<br />
stigma and show having a disability is not something to<br />
be scared of.”<br />
‘We don’t want special treatment’<br />
—Sally Barkman<br />
We just want to be treated<br />
the same as everyone else.<br />
Away from her job, Sally is also a tireless advocate for<br />
people with disabilities, regularly campaigning for better<br />
access at stadiums and public events.<br />
“Most venues have a space for a wheelchair, but you can<br />
only have one person with you. But we’re a family of<br />
three, so we can never sit together,” she says. “That’s not<br />
fair, we’re no different to anybody else, so why should we<br />
be treated any differently?<br />
“One in four New Zealanders lives with a disability and<br />
we need to be recognised. We don’t want special<br />
treatment—we just want to be treated the same as<br />
everyone else.”<br />
She offers great advice for anyone who has sustained a<br />
spinal cord impairment and is at the start of their journey.<br />
“Take advantage of the people around you who can offer<br />
that lived experience perspective, that is really<br />
important,” she says. “You need to celebrate the small<br />
wins and focus on the positives. It is ok to have a bad day,<br />
but you need to keep moving forward. You only get one<br />
life, and you need to live it to the fullest whether that is in<br />
a chair or walking. Be your best and make the most out of<br />
life because tomorrow is not guaranteed.”
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SPINAL NETWORK NEWS 19<br />
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NEW ZEALAND SPINAL TRUST 20<br />
“Times Like These”<br />
Paraplegic Jamie Astwood says attending the Foo Fighters concert<br />
at Mt Smart Stadium was an “incredible experience”.<br />
HUGE RECEPTION—The Foo Fighters are always well received in NZ. Credit: Bradley SG Creative.<br />
Over the years, the Foo Fighters have forged a<br />
reputation as one of the world’s best live bands.<br />
In January this year, they played three sold-out shows in<br />
Auckland, Wellington and Christchurch. Dave Grohl was<br />
at his charismatic best, charging through a power-packed<br />
set list like a man possessed.<br />
Going to a rock concert is a special experience and one<br />
that can be a lot more challenging and intimidating from<br />
a wheelchair. Jamie Astwood is the type of person who<br />
never wants to miss out.<br />
The paraplegic attended her first Foos concert at Mt Smart<br />
Stadium in Auckland with her friend Sam, and you<br />
couldn’t wipe the smile off her face. She described it as<br />
“an incredible experience”.<br />
With her ears still ringing from the three-hour show, the<br />
22-year-old talked us through what people in a wheelchair<br />
can expect if they are going to attend a stadium rock show<br />
The anticipation waiting<br />
for them to come on stage<br />
was massive.<br />
—Jamie Astwood<br />
and encouraged others to be brave and get out for an<br />
awesome night with their mates.<br />
Were you nervous about going to a stadium show?<br />
No, I wasn't nervous. I was with my friend so I knew she<br />
would be there at all times. I also find that people<br />
generally watch out for you and most of the time are<br />
willing to help or move if needed. I also knew I wasn't<br />
going to be in the heart of the mosh pit so that also<br />
stopped any nerves I may have had.
SPINAL NETWORK NEWS 21<br />
Was it your first time attending a concert like this?<br />
This was the first rock concert I have attended although I<br />
went to the Harry Styles concert last year which was at<br />
the exact same venue and parking etc. I was honestly<br />
more nervous for the Harry Styles concert because of all<br />
the crazy 16-year-old fangirls and their obsessed<br />
middle-aged mothers she laughs.<br />
What was it like for parking?<br />
To organise the accessible parking, you must call/email<br />
the venue a week in advance to fill out a form with your<br />
details, mobility permit number etc. I received a mobility<br />
parking pass to print out and have with me on the day of<br />
the concert. There was one entrance to the accessible<br />
parking, with the parking pass and my mobility permit on<br />
display I was waved right through.<br />
I spoke to someone who had gone through the same<br />
process as myself, but they never received the pass to<br />
display on their dashboard. Because they did not have<br />
this, they got turned away. The carpark is a large area<br />
located about 50 metres from the relevant gate entrance.<br />
It was all loose gravel and could be hard for some<br />
wheelchair users to push themselves through.<br />
How difficult was it getting into the concert?<br />
The line for the gate entrance was on a reasonably steep<br />
hill. I was with my friend Sam who stood behind my<br />
wheelchair as we waited so I didn't have to hold myself on<br />
the hill. I would have struggled had I been on my own. I<br />
was prompted to go through the shorter line for bag check<br />
by the security staff. The event staff took us straight to<br />
our seat which was a five-minute walk. Sam pushed my<br />
wheelchair at some points, but had she not been there, the<br />
event staff would have been happy to help. We got to our<br />
seats quickly and efficiently.<br />
Where in the stadium were you seated for the show?<br />
Is there an allocated part for wheelchair users?<br />
If you are looking at the stage, I was on the right side, at<br />
the top of the first tier of seats. There were about three or<br />
four allocated wheelchair user spots scattered around<br />
which seated around seven to 14 wheelchairs.<br />
The seating was a big concrete platform approximately 6m<br />
long and 2m wide. There were moveable plastic seats for<br />
the wheelchair companions to sit and then spaces left for<br />
the wheelchairs to fit in. There were no official seats and<br />
we picked where we sat. I could see another wheelchair<br />
platform on the ground which was a much bigger area<br />
with the same setup (moveable plastic seats). The seating<br />
area was easy to access, and I had a great view of the stage.<br />
What was it like accessing the bathrooms?<br />
On the same level as the wheelchair seating there were<br />
around four accessible bathrooms. They were extremely<br />
easy to get to and very spacious. On only one occasion I<br />
was waiting for a bathroom but did not wait very long.<br />
What was the feeling like when the Foos came onto<br />
the stage?<br />
The anticipation waiting for them to come on stage was<br />
massive. I was so excited and the adrenaline was pumping!<br />
I looked at my friend and we both felt like crying.<br />
Happy tears of-course, I think it was the excitement.<br />
SPECIAL MEMORIES—Jamie Astwood<br />
had a great night out with her friend Sam.
NEW ZEALAND SPINAL TRUST 22<br />
THE MAN—Dave Grohl is known for being one of the best<br />
performers in the world. Credit: Bradley SG Creative.<br />
GREAT VIEW—“The seating area was easy to access,<br />
and I had a great view of the stage,” says Jamie.<br />
What was the concert like?<br />
The concert itself was incredible. The atmosphere was<br />
great, and it looked as though everyone was having a<br />
blast. There was a huge range of different ages—my friend<br />
and I in our early 20s enjoyed the concert next to middle<br />
aged dads and everyone was really getting into it.<br />
Halfway through the concert, Jack Black made an<br />
appearance to sing an AC/DC song which had the whole<br />
crowd hyped up. This was the first time I had seen the Foo<br />
Fighters in concert, but my friend stated that this time<br />
was even better than when she went for the first time back<br />
in 2016. I can’t wait until the Foo Fighters next come as I<br />
will definitely be going again. By the end of the concert<br />
my ears were ringing… just as I had expected.<br />
What was the highlight of the night?<br />
On the drive there, my friend and I were saying which<br />
songs we were most wanting to hear. Hearing our<br />
favourite songs live was definitely the highlight. My<br />
favourites were Monkey Wrench, My Hero and of course,<br />
Everlong—good choice of song to finish on!<br />
What was it like getting out at the end?<br />
Once the concert finished, my friend and I whipped away<br />
to pop to the bathroom before leaving, meaning we did<br />
not go out with the rest of the wheelchairs. I cannot speak<br />
on how their experience was getting out of the stadium.<br />
We located the lift where we came up and there was an<br />
—Jamie Astwood<br />
I can’t wait until the Foo<br />
Fighters next come as I will<br />
definitely be going again.<br />
event staff member there ensuring that only people who<br />
were unable to use the stairs were taking the lift. This<br />
meant we were able to get down with ease without being<br />
pushed or shoved around.<br />
We wandered back to the car the same way we came<br />
which took another five minutes. On the mobility parking<br />
pass, it advises that there may be a 30–60 minute wait<br />
before we are able to leave the car park. This is because<br />
they must ensure all foot traffic has dispersed before they<br />
can get us out. This didn’t worry my friend and I as we<br />
just blasted music in my car and sang our hearts out in<br />
the line of cars until we got on the road. I am unsure of<br />
the exact time we waited but it was approximately one<br />
hour. The wait was well worth the location of the parking.<br />
It makes it a lot easier entering and exiting and takes away<br />
the worry of finding an alternative option.
SPINAL NETWORK NEWS 23<br />
How to Grow a<br />
Lemon Tree<br />
Hamish Ramsden<br />
Columnist<br />
—Hamish Ramsden<br />
I’m not ready to have lime<br />
juice squeezed over my<br />
fish and chips, just yet!<br />
They say when life gives you lemons, make<br />
lemonade. Hamish Ramsden, a published<br />
author and popular member of the NZ Spinal<br />
Trust team, is back with his latest column.<br />
I’ve always liked lemon trees, to me in a way they finish<br />
off a garden. There’s something about a big vibrant lemon<br />
tree with lots of bright lemons on it, it has a feel-good<br />
factor about it. I don’t know why but they just look good,<br />
but how the hell do you grow them?<br />
I had shifted into my new house and had a garden<br />
designed with lots of different plants that I’d never heard<br />
of before; there was a specific area for herbs and spices<br />
and a couple of lime trees and a lemon tree. Well, the<br />
spices didn’t last long as my flatmate and I really had no<br />
interest in them and so they got taken over by other<br />
plants. The lime trees bounded along but my lemon tree<br />
slowly subsided and withered away. No matter I thought,<br />
I’ll go and get another one.<br />
This time I planted it in a slightly different area and even<br />
with my tender love and care (fertiliser, water, lots of<br />
encouraging compliments) it lasted even less time than<br />
the last one. Trying not to be too dejected, or a defeatist, I<br />
thought what do I do now? Well since the limes are doing<br />
so well how about I take one of them out and put a lemon<br />
tree in its place. It may not get a lot of sun in that spot, but<br />
limes and lemons must be from the same citrus family, so<br />
all will be fine. It started to grow magnificently, new<br />
leaves, new flowers, but then some slimy leaf eating<br />
things struck. We got this breakout controlled and I<br />
thought that is that, things are looking good, boy am I a<br />
good gardener!<br />
It was looking magnificent when I left to go away for two<br />
weeks. I was confident I had cured my lemon curse, only<br />
to find to my dismay, upon my return that it had almost<br />
completely died. Right, that is it, no magnificent lemon<br />
tree for me. But then I was at the garden shop, buying a<br />
couple of other plants and I thought I would buy just one<br />
more and see how we go. Actually, not see how WE go, I<br />
absolved myself of all responsibility and said to my<br />
flatmate, right it is your turn. Not bounding with<br />
enthusiasm, he thought he would change tack and try to<br />
grow it in a pot, so then it can be moved around for<br />
maximum sun attraction. Great idea I thought but leave<br />
me out of it as I am cursed.<br />
He transferred it into a pot and everything seemed to be<br />
fine. It was positioned directly outside my office and<br />
would be in my direct line of sight, taunting me, when I<br />
looked out the window. Not a problem I thought, great to<br />
have a bountiful lemon tree to lift my spirits. I began to<br />
feel that his new approach was perhaps not quite up to<br />
scratch (I could hardly criticise him due to my own track<br />
record) as since he is often away with work, I started to<br />
take on some responsibility for the damn tree. Then, as if<br />
by divine intervention, one by one the leaves started to<br />
sag and drop off. Oh hell I thought, so I gave it some more<br />
water which might have been too much water, as nothing<br />
changed. But now I am stuck, do I keep intervening or<br />
not? I could keep offering “valuable” advice trying to keep<br />
his enthusiasm levels up. It is a quandary that I had to live<br />
with on a daily basis, talk about getting hung up on the<br />
small stuff! What to do? As I watched another leaf depart<br />
its mothership. I’m not ready to have lime juice squeezed<br />
over my fish and chips, just yet!<br />
Then unfortunately as time went on the tree withered and<br />
died, I guess in every human skill set there is one<br />
particular thing that will let us down and this differs from<br />
human to human, which is just as well as we don’t want to<br />
all fail at the same thing. So I backed off and he backed off<br />
and then we had an empty pot which we didn’t know what<br />
to do with, our confidence was shot. Never mind my<br />
daughter said, you have a birthday coming up and I know<br />
exactly what to give you!
NEW ZEALAND SPINAL TRUST 24<br />
Two Tetraplegics Take on<br />
the Abel Tasman Track<br />
Andrew Leslie and George Thompson complete one of New Zealand’s<br />
Great Walks to make a difference.<br />
Abel Tasman<br />
National Park<br />
Marahau Totaranui 60km<br />
Tetraplegics Andrew Leslie (51) and George<br />
Thompson (67) achieved something<br />
remarkable in March. The pair—who were told<br />
they would likely never walk again—tramped<br />
the Abel Tasman National Park (60km) over<br />
five days. We caught up with them following<br />
their walk to reflect on the achievement.<br />
As Andrew Leslie and George Thompson make their final<br />
descent down into Tōtaranui and onto the Wainui carpark<br />
in the Abel Tasman National Park, the enormity of what<br />
they have achieved hits them.<br />
GREAT MATES—When Andrew Leslie<br />
called George Thompson with the idea of<br />
walking the Abel Tasman track, he didn’t<br />
hesitate. Credit: Jeremy Brick, ACC.<br />
—Andrew Leslie<br />
You need to know big things<br />
in life are still possible.<br />
With pain throughout their bodies and weary legs from<br />
five days on the undulating terrain, tears well up in their<br />
eyes as they set foot on the golden sand as they reach the<br />
finish line at the gateway. Andrew says it’s a moment he<br />
will never forget.<br />
“We reflected on our journey together,” he says. “About<br />
meeting in the Burwood Spinal Unit and all of the hard<br />
times we’ve been through together, and how fortunate we<br />
were to be able to do this.“We know that it could have
SPINAL NETWORK NEWS 25<br />
—George Thompson<br />
Make sure you say thanks to<br />
the people around you.<br />
told to expect him to be a wheelchair for the rest of his<br />
life. George was told it was likely he wouldn’t walk again<br />
by the doctors at the Spinal Unit.<br />
“The fact that four years on from that moment, when they<br />
gave me a 20 percent chance to walk again, that I would<br />
be walking around the bloody Abel Tasman, is quite<br />
extraordinary,” says George.<br />
HARD TIMES—Back in 2020, Andrew and George in the Burwood Spinal Unit.<br />
George was given a 20 percent chance of walking again. Andrew’s family was told<br />
he would likely be in a wheelchair for the rest of his life.<br />
been very different and for most people it is. It was pretty<br />
emotional and good to be able to share that moment with<br />
a great mate.”<br />
The pair had trained for months to be ready for the Great<br />
Walk. “It was definitely the biggest challenge I have taken<br />
on so far. Physically, it pushed us to the absolute limit,”<br />
says Andrew. “And mentally—a big part of what we were<br />
doing was going into the unknown. We didn’t know if we<br />
were going to be able to complete it. It was a huge feeling<br />
of accomplishment.”<br />
George added: “When Andrew called to say: ‘Do you want<br />
to walk the Abel Tasman track?’ I didn’t hesitate, but man<br />
it was bloody tough. I am proud that I proved a lot of<br />
people wrong who said I couldn’t do it.”<br />
Since his injury in 2020, Andrew has made a habit of<br />
setting personal challenges. In 2021 he walked back to<br />
Mākara Peak to the scene of his accident. In 2022, he ran<br />
5km around Karori Park and last year he completed an<br />
Outward Bound course.<br />
Four years ago, their lives changed forever. In Levin,<br />
George broke his neck in a farming accident when he<br />
crashed his quad bike into a drain in February 2020.<br />
Around a month later, Andrew broke his neck in a<br />
mountain-biking accident at Mākara Peak in Wellington.<br />
They were both lucky to survive.<br />
George was flown to Christchurch Hospital where he was<br />
admitted to the Intensive Care Unit and was fighting for<br />
his life. He would go onto spend six months in the<br />
Burwood Spinal Unit.<br />
The pair was proud to complete three personal bests in<br />
terms of walking distance since their accidents on day<br />
one (12.4km), day three (13.5km), and day four (17km).<br />
“Day three was the hardest,” says Andrew. “There were<br />
sections of the track that had been wiped out by the slips<br />
and that made it quite tricky to negotiate and physically<br />
demanding on the legs. But we got through it, and we<br />
made great progress on day four.” They paid tribute to<br />
their incredible support crew who kept them going.<br />
“When we woke up on the final day, George was buzzing.<br />
He was pretty buoyant that we were on the cusp of<br />
completing this huge challenge.”<br />
Andrew says they took on the walk for two reasons.<br />
“Firstly, it was about not only showing to ourselves that<br />
we can do it, but to others living with impairments as<br />
well. And we want to use this walk as a platform to<br />
champion better accessibility in the outdoors. It’s a<br />
complex problem to solve, but sometimes resolving<br />
relatively small issues can make a big difference.<br />
“Wouldn’t it be amazing if New Zealand had an accessible<br />
Great Walk?”<br />
Completing a Great Walk is a long way from where they<br />
have been. When Andrew was in the ICU, his family were<br />
DREAMING BIG—Andrew says “We are using this walk as a<br />
platform to champion better accessibility in the outdoors.”
NEW ZEALAND SPINAL TRUST 26<br />
While he was coming to terms with his new reality,<br />
Andrew had his mountain bike crash. Andrew followed<br />
the same stressful journey through ICU and the pair met<br />
in the Burwood courtyard. “We hit it off straight away and<br />
have been laughing ever since.”<br />
ACC has played a leading role in both men’s rehabilitation.<br />
“The ongoing support from ACC has been a real plank in my<br />
recovery,” says Andrew. “I simply wouldn’t have achieved<br />
what I have without their constant support and help.”<br />
George said New Zealanders don’t know how lucky we are<br />
to have a scheme like ACC. “For people like us it has given<br />
us the chance to have a second crack at life.”<br />
They never accepted the prospect that they might not<br />
walk again.“We really pushed each other,” says George.<br />
“We both set the goal of walking out of the Burwood<br />
Spinal Unit and to achieve that feat was both incredible<br />
and surreal really.”<br />
The constant through their time in Burwood, and<br />
completing the Abel Tasman track, has been banter.<br />
“It's a really challenging place to be as you're coming to<br />
terms with a new reality,” says Andrew. “When things got<br />
hard, we were laughing together. We are proud of what<br />
we have achieved. It was an incredible adventure.”<br />
THE FINISH LINE—Left to right: Ed Shuttleworth, Dave Parkinson (both support<br />
crew), George Thompson, Andrew Leslie and Fiona de Young (support crew).<br />
What you do is your history.<br />
What you set in motion is your legacy.<br />
A spinal cord impairment—whether it happens through injury or<br />
illness—can be a sudden life changing event. It can feel as though your<br />
life has stopped. It can be challenging, confronting, daunting, scary.<br />
It can also be the start of a new, positive, unexpected and fulfilling<br />
life journey.<br />
A decision to include a gift in your Will for the work of the NZ Spinal<br />
Trust supports people across Aotearoa NZ as they learn to embrace<br />
a positive future with spinal cord impairment.<br />
If you are considering writing or amending your Will and would like<br />
an information brochure on how to include NZST, please email<br />
Su Marshall (su.marshall@nzspinaltrust.org.nz).<br />
If you would like to chat about who we are and who a bequest<br />
would support, please contact Hans Wouters, CEO<br />
(hans.wouters@nzspinaltrust.org.nz) or phone 03 383 6881<br />
www.nzspinaltrust.org.nz<br />
Te Tarahiti Manaaki Tuanui<br />
“Having the Trust there to help navigate those first<br />
few weeks or even the first few months was just<br />
incredible, because it’s extremely overwhelming.”
SPINAL NETWORK NEWS 27<br />
Back in His Happy Place<br />
After a Broken Back<br />
Kiwi surfing legend Maz Quinn broke his back in an accident last<br />
year—after five months of recovery he is back in the waves.<br />
HOME—Maz Quinn, back where he belongs, in the waves.<br />
New Zealand surfing legend Maz Quinn is<br />
back where he belongs. The former pro surfer<br />
has recovered from a broken back to get back<br />
to doing what he loves.<br />
Maz Quinn is sitting on his board out amongst the waves,<br />
and you can’t wipe the smile off his face. The four-time NZ<br />
Surfing Champion, who learned to surf on his home beach<br />
of Wainui, is back in the ocean for the first time since a<br />
life-changing accident. It’s a moment of huge relief.<br />
“I was so stoked and relieved,” says the 47-year-old from<br />
his home in Gisborne in his typical laidback manner. “It<br />
was only small waves but to be able to surf pretty much<br />
pain free, it was an incredible feeling. It meant that I<br />
knew I could do it again.”<br />
I knew I was in trouble<br />
straight away.<br />
—Maz Quinn<br />
Maz has surfed at the highest level. In 2001, he became<br />
the first New Zealander to qualify for the World<br />
Championship Tour, in doing so becoming one of the<br />
world's top 44 ranked male surfers.<br />
He says it’s hard to imagine his life without surfing.<br />
“Every time you go for a surf it makes your day better. It’s<br />
good for your mind and body... I love it so much that it was<br />
hard to accept that it had been taken away from me.”
NEW ZEALAND SPINAL TRUST 28<br />
—Maz Quinn<br />
When I was lying in hospital<br />
it did go through my mind<br />
a few times am I going to be<br />
able to surf well again?<br />
He had been surfing for a couple of hours when he didn’t<br />
quite make the drop and instead was plunged to the<br />
bottom and hit his torso and back on the rocks.<br />
“The first whack was pretty violent,” he says. “I knew I<br />
was in trouble straight away. It was a big bang and it got<br />
worse and worse every minute that passed.”<br />
Maz was washed into the beach by the surf but was unable<br />
to walk, forced to make a painful 20-minute crawl up the<br />
beach until he was noticed. He was eventually spotted by<br />
another person who notified his wife Ngahuia. They then<br />
came across an off-duty paramedic who was able to get<br />
paramedics from St John Māhia down to the beach<br />
within minutes.<br />
SUPPORT—Lying in the Gisborne Hospital, Maz was overwhelmed<br />
by the support of the international surfing community.<br />
It had been just under five months since an accident on<br />
Māhia Beach which could have paralysed or even killed<br />
the NZ surfing legend.<br />
Maz says it didn’t help that for the first month of his<br />
recovery that the surf “absolutely pumped”. “It was so<br />
hard to sit on the beach and watch it roll in. I was like<br />
‘This is the best July for surf I have ever seen’,” he laughs.<br />
But Maz was also in a world of pain and needed to be<br />
patient. “When I was lying in hospital it did go through<br />
my mind a few times am I going to be able surf well<br />
again,” he says. “I definitely have a new perspective now,<br />
and I will never take being able to surf for granted.”<br />
“It was pretty violent”<br />
Maz has clear memories of June 28, 2001 at Māhia Beach.<br />
Maz was so stoked to be heading to Māhia for the day to<br />
surf his favourite wave. He was in his happy place.<br />
“There were only four or five guys out there and it was a<br />
beautiful sunny day. The waves were cooking. I literally<br />
couldn’t get out there fast enough. It was a perfect day,<br />
and the surf was so good.”<br />
Maz says over the years Māhia has forged a reputation—if<br />
you get it wrong, it has consequences. “It’s a break that has<br />
taken a few people down over the years,” he laughs. “It’s a<br />
special wave—it’s the sort of wave you’d pay $1000 overseas<br />
to go and surf and we have it right here in our backyard.”<br />
It was Ngahuia’s first time watching Maz surf the Māhia<br />
break. “She saw someone walking up the beach with my<br />
board but I wasn’t with it, so she started freaking out,” he<br />
says. “By that stage I couldn’t yell out to them because it<br />
was way too sore to talk. There was long grass up in the<br />
dunes so no one could see me lying on the beach in pain.”<br />
Maz was airlifted by the Eastland Helicopter Rescue Trust<br />
to Gisborne Hospital. He fractured four transverse<br />
processors—the bones at the bottom of the spine, broke<br />
four ribs and tore his rotator cuff.<br />
“I was in a huge amount of pain, but I was lucky,” he says.<br />
“The doctor told me if the impact had been a few inches<br />
either side, it would have damaged my spinal cord and<br />
then it would have been a very different story.”<br />
The long road to recovery<br />
Around a week later, Maz hobbled out of Gisborne<br />
Hospital with the support of a Zimmer Frame. He was<br />
scared about what the future might hold. The progress<br />
was slow at first and hard going as he learned how to walk.<br />
His wife was not only looking after their 10-week-old son<br />
Freddy, but also had to be Maz’s full-time carer. “It was<br />
like Ngahuia had two babies because I couldn’t do<br />
anything. I was just hobbling from the beach to the couch<br />
and then to the toilet. It had a big impact on my life and<br />
was hectic for her.”<br />
But over time things improved. Through constant work<br />
with his medical team and physiotherapists, Maz worked<br />
towards his goal of getting back on the board.<br />
“ACC has been there for every step of my recovery which<br />
has been epic. Even now I am going to physio once a week<br />
and they are supporting that,” he says. “It’s times like you<br />
this, when you are injured, you realise that you are pretty<br />
lucky to live in New Zealand and have that support of ACC.”
SPINAL NETWORK NEWS 29<br />
The high rate of surfing related injuries<br />
ACC claims data shows that surfing is the leading cause of<br />
water-related injuries in Aotearoa.<br />
Surfing New Zealand is encouraging New Zealanders to<br />
give the sport a go. But they need to make sure they surf at<br />
their skill level. “As surfers we have to respect the ocean<br />
and acknowledge that our sport is an adventure sport and<br />
does have its dangers,” says Lee Ryan, the Development<br />
Manager at Surfing New Zealand. “It’s just knowing how<br />
to minimise the risks and that comes with experience.”<br />
Maz agrees. “If you have any doubt, then don’t go out,”<br />
he says. “I know it’s hard sometimes when the surf is really<br />
good and that is how you get better, by pushing yourself but<br />
you need to make sure you are building gradually. Weigh up<br />
the skill level you have with the waves you are about to surf.<br />
It is ok to say no if you don’t feel comfortable.”<br />
BATTLE—Maz had to learn how to walk again during his rehabilitation.<br />
A revolution in<br />
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NEW ZEALAND SPINAL TRUST 30<br />
Heading on the<br />
Road Again<br />
Waikato to Bay of Plenty—part two<br />
Did you read part one of our accessible<br />
summer road trip? Here’s part two, offering<br />
some advice and inspiration to get you in the<br />
mood for your own accessible adventure—<br />
brought to you by Freedom Mobility.<br />
Having touched on some of the myriad things to see and<br />
do in Rotorua, this part of the story covers<br />
accommodation options, walks and trails, plus a few neat<br />
day trips you can enjoy using the town as your base.<br />
Remember, as well as the accommodation listed here you<br />
can check out the Accessible Travel Forum for NZ<br />
Facebook group for more tips on accessible holiday homes.<br />
Days 1–3: Rotorua<br />
As well as being a great place to visit, Rotorua is a handy<br />
base for exploring the wider region. It also has some<br />
amazing walks and trails, and many are surprisingly<br />
accessible. You can even rent a Trail Rider at Redwoods<br />
Forest Park and, with the help of two others, take on<br />
almost any trail in the Rotorua region. To book, email<br />
forest.Recmanagement@rotorualc.nz<br />
Stay in Rotorua<br />
All Seasons Holiday Park<br />
This family favourite is a short drive from both the<br />
town centre and the airport. Units are available with an<br />
accessible bathroom, handles for toilet and shower and<br />
a fold-down seat in the shower. Doorways are 800mm<br />
wide. You may have a problem with the gravel in the car<br />
park, while steps make the office inaccessible.<br />
Lounge to Lawn to Lake<br />
This is a great accessible holiday home built with a<br />
paraplegic's needs in mind. Entryways are ramped<br />
and it has an accessible bathroom. The kitchen isn’t<br />
wheelchair accessible but it’s still a good option with a<br />
travelling companion. Sleeps five.<br />
Paradise Valley Lodge<br />
Set in beautiful gardens, the lodge has a cottage that<br />
sleeps two or three with accessible entry and<br />
bathroom. If you use a wheelchair the kitchen isn’t<br />
accessible but it’s perfect if you’re travelling with<br />
someone who doesn’t.<br />
Redwoods<br />
Just five minutes drive<br />
out of Roturua, Redwoods<br />
has two wheelchairaccessible<br />
walks: the<br />
30-minute Memorial<br />
Grove track and the<br />
hour-long Waitawa walk.<br />
Rotorua Lake Front<br />
With beautiful views of<br />
Lake Rotorua, the<br />
boardwalk has several<br />
wide pathways and<br />
stretches into the lake.<br />
Kuirau Park<br />
This walkway covers a<br />
1.4km loop through mud<br />
pools and boiling lakes<br />
right in the heart<br />
of Rotorua.<br />
Museum Gardens<br />
Wheelchair-friendly<br />
pathways wind through<br />
the Government Gardens<br />
around Rotorua Museum.<br />
You can also join the<br />
daily 11am–12.30pm<br />
guided tours.<br />
Walks/Trails in Rotorua<br />
Hannah’s Bay<br />
Just 12 minutes out of<br />
town you’ll find this<br />
delightful beach<br />
surrounded by kahikatea<br />
forest. The wetlands<br />
boardwalk track is<br />
accessible for 2km to<br />
Silver Beach and has<br />
accessible toilets.<br />
King Hill Reserve<br />
Just 20 minutes from<br />
Rotorua, and 20 minutes<br />
long, this flat well-defined<br />
track heads through rimu<br />
and tawa forest, amid<br />
remnants of the area’s<br />
mining past. Will be<br />
muddy after heavy rain.<br />
H Tree Track<br />
The H Tree Track in<br />
Whirinaki Te Pua-a-Tāne<br />
Conservation Park is an<br />
easy loop through grand<br />
podocarp forest, and<br />
home to a number of<br />
native birds<br />
including kaka.
SPINAL NETWORK NEWS 31<br />
Day 4: Matamata<br />
Or should that be Hobbiton? Just an hour’s drive<br />
northwest from Rotorua lies Matamata, home to the<br />
Hobbiton Movie Set experience. The attraction offers<br />
accessible options that include travel via a golf cart or a<br />
shorter, discounted wheelchair route. Advance booking<br />
on 07 888 1505 is essential.<br />
ICONIC—The<br />
well-known Huka<br />
Falls in Taupo.<br />
LEFT PAGE—Redwoods Forest in<br />
Rotorua has two wheelchair-accessible<br />
walks. ABOVE—The Hobbiton Movie Set<br />
experience. RIGHT—Take your photo<br />
opportunity with the #LOVETAUPO sign.<br />
ACCESS—Experience the only<br />
wheelchair-accessible cave in the<br />
southern hemisphere at Ruakuro Cave.<br />
Day 5: Taupo<br />
Another one-hour drive from Rotorua, Taupo offers its<br />
own lakeside experience. If you’re up to it there are some<br />
great adventures to be had, while other attractions are<br />
universally accessible.<br />
Fancy an adrenaline rush? Then Huka Falls Jet gets you<br />
up close to the famous waterfall. Accessible via a riverside<br />
ramp with the help of the crew, it needs hand and arm<br />
function to hold on or a friend to assist, and weight<br />
restrictions apply. Talk it all through when booking.<br />
Just as thrilling is taking a scenic flight in Taupo’s float<br />
plane and the views are breathtaking. Accessed via a<br />
floating jetty, the lip of the plane can be a bit tricky. So<br />
bring a friend to assist and the pilot, Neil, will help.<br />
For something a bit more chilled, try the Lava Glass<br />
Gallery and Sculpture Gardens or the readily accessible<br />
Craters of the Moon geothermal walk.<br />
Walks/Trails in Taupo<br />
Day 6: Waitomo<br />
A two-hour drive will get you to the Ruakuri Cave at<br />
Waitomo, the only wheelchair-accessible cave in the<br />
southern hemisphere. Call in advance, though, to see if it<br />
will work for you. Some paths are steep (and dark), and<br />
they recommend wheelchairs aren’t wider than 65cm. A<br />
great 1.5-hour experience with plenty of glowworms.<br />
Next time around we’re on the road again. And what a<br />
drive it is, to the beautiful Bay of Plenty with heaps to<br />
enjoy and explore. Catch you then.<br />
Transportation<br />
Haven’t got your own modified vehicle, or need to fly<br />
in? Then renting from Freedom Mobility will get you<br />
mobile. Our fleet of vehicles ranges from<br />
hand-controlled cars to wheelchair vans, with<br />
delivery available throughout New Zealand, including<br />
to your home or the airport. Our friendly team will<br />
help you find the best solution, including roadside<br />
assistance 24/7. Just be sure to book in advance as<br />
demand is high, especially over holiday season.<br />
Huka Falls walkway<br />
There are mobility parks<br />
in the car park, then it’s a<br />
short 167m to the lookout.<br />
The 3km/1.5-hour<br />
Spa Park track is also<br />
reasonably accessible.<br />
Great Lake Taupo<br />
Walkway<br />
Wheelchair accessible<br />
to Wharekawa point,<br />
here’s your opportunity<br />
for a photo by the<br />
#LOVETAUPO sign.<br />
Resources<br />
• Play-and-Stay Directory: freedommobility.co.nz<br />
• Accessible database: firstport.co.nz<br />
• Visit: grabyourwheels.nz<br />
• Info at: havewheelchairwilltravel.net<br />
• Toilets and other info: Campermate App (IOS/Android)
NEW ZEALAND SPINAL TRUST 32<br />
New to Milner Mobility<br />
Van Raam<br />
Wheelchair<br />
Bikes<br />
Wanting to transport someone who has a wheelchair, by E-bike? The world leading manufacturer Van Raam<br />
has two models of wheelchair bikes: VeloPlus wheelchair bike and OPair wheelchair bike.<br />
OPair Wheelchair Bike<br />
The passenger sits in the front of the bike. The<br />
standard seat is adjustable in many different ways.<br />
If you want, you can fit your own seat. Optionally,<br />
the wheelchair section can be disconnected from the<br />
bike and used independently as a wheelchair. The<br />
OPair wheelchair bike has a modern design and is<br />
very accessible.<br />
VeloPlus Wheelchair Bike<br />
The passenger can stay in their own wheelchair.<br />
Almost any hand-powered wheelchair can be easily<br />
and quickly ridden and locked into place onto the<br />
tilting platform of the wheelchair bike by a single<br />
person. Without heavy exertion and without a<br />
transfer, the personal wheelchair can be placed on<br />
the bike.<br />
Scan the QR code to<br />
find out more or contact<br />
info@milnermobility.co.nz<br />
9 Pacific Rise, Mt Wellington, Auckland<br />
www.milnermobility.co.nz
SPINAL NETWORK NEWS 33<br />
Spinal Cure Research<br />
Where did the world get up to with spinal cure research in 2023?<br />
GOOD MINDS—L–R Dr Simon O’Carroll, Nikki Kaye, Zara Tindall MBE,<br />
Catriona Williams MNZM—CatWalk Founder, Dr Jonathan Coleman.<br />
In association with CatWalk Spinal Cord<br />
Injury Research Trust, we review the current<br />
status of spinal cure research.<br />
For 19 years our good friends at CatWalk have funded<br />
research in the Faculty of Medical and Health Sciences at<br />
the University of Auckland (UA).<br />
UA Senior Lecturer Dr Simon O’Carroll has been a part of<br />
this research for 18 years. He lives and breathes spinal<br />
cord injury research and keeps up to date with all the<br />
significant work in this area from around the globe.<br />
In this new feature Dr O’Carroll will inform our <strong>SNN</strong><br />
readers on the latest in spinal cure research both<br />
nationally and internationally.<br />
Spinal cord injuries have long-lasting effects on<br />
individuals, families, and society as a whole. As a result,<br />
a lot of effort has been invested in finding treatments to<br />
enhance the lives of those affected. Simon O'Carroll<br />
highlights the current state of clinical trials, ongoing<br />
research, and potential future directions.<br />
Spinal cord injuries have<br />
long-lasting effects on<br />
individuals, families,<br />
and society as a whole.<br />
Stem Cells<br />
An area of research in development to improve function<br />
in spinal cord injury is the use of stem cells or other cells<br />
to promote recovery. These can be derived from several<br />
different sources, such as brain tissue, bone marrow, fat<br />
tissue, the nasal cavity and the umbilical cord. These<br />
cells can help prevent death of nerve cells, reduce<br />
inflammation, and promote the regrowth of damaged or<br />
new brain cells. Several clinical trials have shown<br />
promise in improving functions such as motor skills and
NEW ZEALAND SPINAL TRUST 34<br />
The ongoing efforts hold the<br />
potential to revolutionise<br />
spinal cord injury treatment<br />
and improve outcomes.<br />
bladder control. However, evidence is still inconclusive,<br />
with trials being relatively small and short-term. Side<br />
effects like neuropathic pain and rare instances of<br />
tumour development have also been reported. New<br />
technologies such as scaffolds that are implanted in the<br />
spinal cord to provide structural support and facilitate<br />
spinal cord repair have shown some promise. It has been<br />
proposed that these scaffolds could be used to protect<br />
stem cells, promote cell growth and survival and these<br />
are currently being tested and are showing success. We<br />
should see these approaches being translated into clinical<br />
trials in the not-too-distant future.<br />
Spinal Cord Stimulation<br />
Another exciting avenue is spinal cord stimulation, where<br />
electrical currents are used to activate specific areas of<br />
the spinal cord. This can be done using either<br />
transcutaneous stimulation (tSCS), where the current is<br />
applied to the skin over the region of the cord or epidural<br />
stimulation (eSCS), where the current is applied directly<br />
onto the spinal cord. These approaches have shown<br />
promise in restoring movement in individuals with<br />
complete spinal cord injuries.<br />
Trials so far have shown stimulation of the spinal cord<br />
can activate pathways controlling muscles below the site<br />
of injury such as the legs, creating a rhythmic walking<br />
motion. This approach completely bypasses the injury<br />
and can promote leg movement in individuals with a<br />
complete spinal cord injury as well as those with an<br />
incomplete injury. Clinical trials to date have been very<br />
promising, with between 65%–85% of individuals in<br />
eSCS and tSCS clinical trials showing improvement in<br />
sensation and meaningful motor function. Using eSCS,<br />
some individuals with complete motor paralysis can walk<br />
overground following training.<br />
However, these approaches can require many months of<br />
intense training to see meaningful improvement and<br />
require the assistance of multiple physical therapists in a<br />
research setting. Also, the settings required need to be<br />
fine-tuned to each individual person.<br />
Regeneration<br />
Regeneration is where the spinal cord tissue is able to<br />
regrow and allow recovery of function. A number of trials<br />
are underway testing scaffolds implanted into the spinal<br />
cord, to promote regrowth of spinal cord tissue. A recent<br />
clinical trial showed that 44% of patients with a complete<br />
paraplegic injury, regained some function. However,<br />
other trials have not shown positive results and so more<br />
EARLY DAYS—While clinical trials for spinal cord injury treatment show<br />
promise, none have yet reached the threshold for widespread use.<br />
trials are needed to determine the best approach that will<br />
work for everyone. Other approaches such as using<br />
electrical stimulation to promote nerve cell regrowth and<br />
removing the scar tissue in the cord are currently being<br />
developed and have all shown exciting results in animal<br />
studies but are yet to be translated into clinical trials. We<br />
can expect to see these underway in the coming years.<br />
Neuroprotection<br />
Several clinical trials have investigated drugs for acute<br />
spinal cord injury, but none have proven effective enough<br />
for widespread use. Ongoing trials are exploring new drug<br />
candidates, such as Riluzole, which protects nerve cells<br />
from dying in other diseases and has shown some<br />
improvements in preliminary trials.<br />
Larger trials are needed to determine if this drug will be a<br />
useful treatment.<br />
Conclusions<br />
While clinical trials for spinal cord injury treatment show<br />
promise, none have yet reached the threshold for<br />
widespread use. One issue with SCI trials is that while<br />
some improvement is seen for some individuals, others see<br />
no improvement and finding a treatment that will work for<br />
everyone affected by spinal cord injury is the ultimate<br />
goal. Combining different approaches and identifying<br />
biomarkers, which are specific signals in the spinal cord or<br />
blood that will show who may respond best to a particular<br />
treatment are areas of active research. Despite obstacles,<br />
the ongoing efforts hold the potential to revolutionise<br />
spinal cord injury treatment and improve outcomes for<br />
countless individuals. Work in this field will make a major<br />
difference in developing effective treatments.<br />
Simon O’Carroll can be contacted by email:<br />
s.ocarroll@auckland.ac.nz<br />
At the time of going to press the <strong>SNN</strong> learned of a new<br />
study by the Mayo Clinic using stem cells from belly fat<br />
to help people with SCI walk again.<br />
To find out more contact Bernadette Cassidy:<br />
bernadette.cassidy@nzspinaltrust.org.nz
SPINAL NETWORK NEWS 35<br />
Thank You to Our<br />
Funders & Sponsors<br />
The New Zealand Spinal Trust appreciates the generous support of the following<br />
funders. Without their kind support, the Trust would not be able to deliver the<br />
variety of services to assist clients to live independent lives right now.<br />
Permobil is a global leader with over 50 years experience in providing advanced<br />
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adaption, service, sales or rental requirements.<br />
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Foundation<br />
Rehabilitation<br />
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