SNN_April 2022 Issue_web low res

April 2022 

Volume 25 / Issue 1 

Te Tarahiti Manaaki Tuanui 

SNNSpinal Network News 

AARON EWEN REFLECTS 

ON HIS REMARKABLE 

RECOVERY 

MEET OUR OWN PARA 

CHAMPION RACHAEL 

HENDERSON 

BOB SYMON ON 

MANAGING PRESSURE 

INJURIES 

The Power 

of the Mind 

NZ Paralympian Gareth Lynch 

on the magic of meditation

NEW ZEALAND SPINAL TRUST 2 

Contents 

Getting out of Your Comfort Zone 

3 21 

Editorial 

5 

6 

9 

12 

14 

18 

Supporting Positive Futures 

Hans Wouters—CEO NZ Spinal Trust 

Taking off the Pressure 

Bob Symon 

Finding Hope after Tragedy 

Aaron Ewen’s comeback story 

What Can I Do? 

Kevin, Ann and the 188 Christmas cakes 

How Meditation can help with Managing Pain 

Gareth Lynch 

Doing the Impossible 

Tetraplegic Andrew Leslie runs 5km 

25 

28 

30 

33 

34 

35 

Meet our Team 

Rachael Henderson relives her Paralympics glory 

Riding in the Rain 

Fundraiser brings in more than $23k 

Resource Centre 

New Additions 

Working Well Together 

Dr Johnny Bourke on the caregiver—patient relationship 

Hamish Ramsden 

Column on Accessible Accommodation 

The Things I Wish I had Known at the Start 


Funders and Sponsors 

EDITORIAL TEAM 

Peter Thornton (Editor) 

CONTRIBUTING WRITERS 

Peter Thornton 

Dr Bernadette Cassidy 


Su Marshall 

Hans Wouters 

Dr Johnny Bourke 

Bernadette Cassidy 

Hans Wouters 

THANKS TO THE FOLLOWING 

FOR IMAGES IN THIS MAGAZINE 

Getty Images / 

Paralympics NZ 

Bob Symon 

The Goat 

Gareth Lynch 

ACC 

Johnny Bourke 

Shane Wenzlick / Phototek 

Su Marshall 

Graeme Brown 

Su Marshall 

Patrons of the New 

Zealand Spinal Trust, 

Sir Tim Wallis (left) and 

Trevor Harrison (right). 

SPINAL NETWORK NEWS is 

published by the NZ Spinal Trust 

Send your contributions to: 

The Editor SPINAL NETWORK NEWS 

c/- New Zealand Spinal Trust, Private 

Bag 4708, Christchurch 8140 

Tel: (03) 383 9484 

Email: 

peter.thornton@nzspinaltrust.org.nz 

Web: 

www.nzspinaltrust.org.nz 

Copy Proofing: Bernadette Cassidy 

and Su Marshall. 

Cover Photo: Gareth Lynch 

representing New Zealand at the 

Tokyo Paralympics. Credit Getty 

Images / Paralympics NZ 

Disclaimer: The views expressed 

in SPINAL NETWORK NEWS are 

those of its contributors. They do not 

necessarily represent the opinion 

of the members of the Editorial 

Committee or the policies of the New 

Zealand Spinal Trust.

SPINAL NETWORK NEWS 3 

Getting Out of Your 

Comfort Zone 

Peter Thornton 

Editorial 

DOING IT TOUGH: The waterfall climb during The Goat is notoriously challenging. Credit: The Goat. 

I am in a place called the Hurt Locker. I’m 

somewhere deep in the Tongariro National 

Park climbing a rocky mountain and I’m in a 

bad way. Both of my hammies are cramping. 

I’m having dizzy spells. My water has all but 

run out and I am running on empty. 

I am half-way up a steep rocky traverse and I am not sure I 

am going to make it. About 20 metres to the left of me a 

friendly South African woman recognises my plight. She 

shouts across the mountain: “Just take it five steps at a 

time.” I slow everything down. I followed my comrade’s 

advice and eventually I got to the top of the mountain. 

My gosh. I’ve never done anything so hard in all my life. 

As I look into the distance I can see my fellow runners 

way, way in the distance at the top of a mountain much 

higher than the one I have just conquered. My body is 

totally broken and then there is another climb to 

overcome. And then another one. It’s relentless. 

Welcome to The Goat. The hardest trail run in the 

country of 20km from the Whakapapa Ski field to Turoa. 

There is 1000m of vertical ascent. It is a battle in every 

sense of the word. 

I know by now that my preparation was nowhere near 

good enough for this challenge and I am starting to 

wonder if I “have GOAT what it takes”. 

—Peter Thornton 

I could feel my heart beating 

in my chest. I was scared 

and it was a great feeling. 

I have no-one to blame but myself. I was having a random 

Friday afternoon chat with an old mate Chris Baker on 

Facebook when the ad for The Goat popped up. Foolishly, 

I said “I’ve always wanted to do that run”. Chris, who ran 

the very first Goat 18 years ago, came back five minutes 

later with “I’ve just signed up, I’ll see you there”. 

We all need someone like my mate Chris in our lives. 

Someone who just signs up and does it and takes you 

along for the ride. 

I remember standing in the queue for the toilets at the 

start line of The Goat and I was genuinely nervous. I could 

feel my heart beating in my chest. I was scared and it was 

a great feeling. 

How often these days do we take on things that will really 

challenge us? There’s the old famous saying of “Do 

something every day that scares you”. It’s a great mantra 

to follow.


Living in your comfort zone is all about doing what is safe 

and easy: you know what the outcome is going to be. But 

outside of our comfort zone is where we learn, grow and 

where we really live. 

Aaron Ewen, who last month made his debut in Para 

alpine skiing at the Winter Paralympics, had a mate like 

Chris Baker. Only six months after he sustained a spinal 

cord impairment, Aaron’s good friend Cole called him 

and said they were going to Mt Ruapehu for a weekend of 

skiing, and he was coming with them. 

Aaron talks about that trip being an eye opener and 

somewhat of a disaster, but it was the start of something. 

Without that moment, he might not have represented 

New Zealand on the world stage. 

More often than not, that moment of accomplishment can 

spur you on to achieve many other things. 

I had a good mate who struggled with depression and 

anxiety for a long time. He was a very capable guy, but he 

was having trouble overcoming his anxiety. 

One year, out of the blue, he signed up for the Auckland 

Marathon and he started running. He was unemployed at 

the time and the marathon gave him a goal to work 

towards and something to look forward to. He achieved 

the marathon and it proved to be a turning point. In all 

aspects of his life, he has never looked back. 

One person who never wants to live in the comfort zone is 

Andrew Leslie. He is just not wired that way. Andrew 

sustained a spinal cord impairment in a mountain biking 

accident two years ago. His family was told that he would 

be in a wheelchair for the rest of his life. It was a reality he 

never accepted. 

On 18 March, Andrew attempted and completed running 

5km around a park in Karori. What a special moment it was. 

Talking to Andrew has inspired us to create some new 

content in 2022 which captures this story for people living 

with spinal cord impairment. It is about encouraging 

people to just try, give it a go. 

It is all about breaking down the barriers of what people 

have been told is possible by their own determination, 

work ethic and curiosity. Watch this space. 

Of course, it’s much easier to say than do. And if you are 

reading this in one of our Spinal Units then you are 

thinking that’s all good and well for them, I am miles 

away from that. 

—Peter Thornton 

More often than not, that 

moment of accomplishment 

can spur you on to achieve 

many other things. 

THE FINISH LINE: It was an amazing sense of accomplishment. 

Credit: The Goat. 

That may be the case. But follow Hamish Ramsden’s 

advice. Hamish (our columnist), has 30 years of lived 

experience with an SCI. He has written a piece called 

“The things I know now that I wished I knew then”. It 

provides invaluable advice for people straight after their 

spinal cord impairment. Hamish says “you will get 

through this” and “don’t look back, concentrate on today 

and look to tomorrow.” 

It doesn’t have to be representing New Zealand at the 

Paralympics or learning how to run again. It could be 

something like getting back into work following your 

injury or illness, re-connecting with an old family 

member or taking up a new hobby. 

I’m coming up the final section of The Goat – a stretch 

they call “Mama’s Mile” (in that you are so broken you just 

want to call your Mama). The clock ticks over five hours as 

I make my final steps over the finish line. I am sore. But 

man, the feeling of accomplishment is unbelievable. 

I will be back to take on this bastard of a run again and 

post a more respectable time. 

But for now, I am happy. I signed up for one of the 

toughest events in the country. I was pushed to my limit, 

and I responded. I know it will be the start of something 

in 2022. I’ll use it as a reminder to seek out opportunities 

to push out of my comfort zone.


Supporting 

Positive Futures 

Hans Wouters 

CEO’s Column 

Joy and laughter are 

superpowers that drive 

wellbeing. 

—Hans Wouters 

tears, anguish and soul searching there is so often joy, 

laughter and some of the most funny and meaningful 

moments that are remembered for life. 

When enduring serious illness or injury, tragedy and 

hardship, moments of joy and laughter are restorative and 

are well worth seeking out and embracing. One of the 

great guitar players of the world Carlos Santana says, "If 

you carry joy in your heart, you can heal any moment." 

Hans sharing some cake with our awesome volunteers. 

"Get back to work! I don't pay you nothing 

to do nothing" 

I am often heard saying this to our wonderful volunteers 

with a cheeky grin on my face. It reminds me of our 

founder paraplegic Professor Alan Clarke stating he had a 

rugby injury because he was adjusting his TV aerial to 

watch an All Blacks game when he fell from his roof and 

broke his back. Although I never met him, I imagine he 

had a smile on his face when he told people this too. 

Fun is one of my top five values and I think having a sense 

of humour, joy and laughter are super powers that drive 

wellbeing. When new people I meet find out where I work, 

they often get a serious, solemn look on their face, lower 

their voice a bit and say things like "Oh, that must be a 

really tough job" or "that must be a really sad place to 

work". On the other hand, I regularly hear from people 

who have actually experienced the spinal unit say that 

they can't believe how much joy and levity is easily found 

there - it is surprising to them! 

The thing is, sadness and joy are not mutually exclusive, 

they can and often do dwell together and that is ok. The 

grief a new patient and their whānau can experience is 

well documented and all too often the sense of loss is very 

powerful. The fascinating thing is that amidst many 

This of course has nothing to do with guitars, but it is a 

great truth. Joy is a very useful tool for your life and if it is 

not in your toolbox already, I encourage you to find it - it 

will serve you well. 

I wrote this to our team towards the end of last year. 

Kia ora team, I really need to eliminate one word from 

my vocab and need your help please. The word is "Wheelie". 

I have been very mindful of our ‘Walking SCIs’ especially 

since we brought the story of five of them to you in our 

annual campaign last year. For a long time, I have used one 

catchall term for all people with an SCI – “Wheelie”. Sure, it 

is easy, friendly and sounds fun, a term of endearment 

really, however it does not in fact cover everyone. 

The walkers aren’t wheelies….Andrew Hall says they are 

“nearly wheelies” and I have heard some agree with that. 

But I wonder how they feel when they hear me using the 

term ‘wheelie’ for the spinal community of New Zealand? 

Not the best I should imagine. I am not showing empathy 

towards them when I use the word and in fact in some ways, 

I am confirming the isolation they sometimes feel from the 

spinal community at large. Therefore, I wish to remove this 

from my conversation and really do want you to call me on 

it if you hear me use the word please. I do not have a 

satisfactory ‘one word’ replacement yet and may not find 

one either – open to suggestions of course. 

So SNN reader, if you have a suitable replacement do let 

me know. If it is a 'wheelie good one' it may get used from 

time to time. Arggh! There goes my sense of humour 

again.


Under Pressure 

Q and A with Bob Symon on Managing Pressure Injuries 

never recover back to the point to where you were prior to 

having that injury. That escapes some people. That’s why 

it’s so important to prevent the pressure injury happening 

in the first place. Prevention and early treatment are so 

important. Prevention can be making sure you have 

appropriate equipment for your injury level and lifestyle 

and your body is correctly positioned. Points to follow 

that decrease the risk of these injuries occurring. 

What is very important in my skin care routine and skin 

care management, is the collaboration with whānau and 

carers – discussing skin health morning and night, daily. 

What sort of situations may cause a pressure injury? 

Bob Symon and his wife Janet. Credit: Bob Symon. 

Bob Symon has almost 40 years’ experience 

in a wheelchair so when he offers advice, 

it pays to listen. In 2021 the New Zealand 

Spinal Trust board member was invited by 

ACC to be a member of an expert panel on 

pressure injuries. Bob was happy to pass on 

his lived experience. The end result was the 

‘Pressure injury in spinal cord injury: consensus 

statement’. It’s a comprehensive document. 

It recognised that a consistent approach to pressure 

injuries in people with SCI across Aotearoa was needed. It 

also outlined the unique characteristics of our 

community creates specific risks around pressure 

injuries. We caught up with Bob, a C5/6 complete 

tetraplegic, to talk about pressure injuries and how 

important prevention is. 

Bob, with your lived experience of SCI, can you give us 

some insight into pressure injuries and how best to 

manage them? 

A pressure injury occurs because of impeded blood-flow 

in the body. That is a result of something applying 

pressure on that part of the body or the injury itself. What 

happens as that pressure is prolonged, the blood-flow and 

the damage to the area increases. 

One of the important things that has to be realised with 

pressure injuries is once you get a pressure injury you 

Over the 35 years that I’ve been in a wheelchair, even with 

continuous careful skin monitoring, I have experienced 

multiple pressure injuries. Those have ranged from hours 

to weeks for recovery. Examples of causes experienced 

have been tight shoes, sitting on an aeroplane’s seatbelt, 

mattress malfunctions, hospitalisation in non-spinal 

ward with inadequate turning, knees jammed under a 

table, and my body – scoliosis causing pressure points on 

parts of my wheelchair. 

A pressure injury can occur through something simple 

like being transferred onto a seat of a boat that is really 

hard. Hopping onto an aeroplane and doing up the 

seatbelt across your lap, no one was in the neighbouring 

seat and oblivious, I sat on that seatbelt, that was an 

example of how easily they can happen. You need to be 

cognisant of what position your body is in at all times, 

aware of environment at all times. You need to know what 

body part might be at risk. Constantly checking. 

I recommend reading the ‘Consensus Statement’ 

document (Link on Pg 7) that was published in November 

2021. I contributed to the discussion and the prevention 

approach, a collaboration between practical user 

experience, clinicians’ expertise, and common sense from 

different perspectives. I thoroughly enjoyed being part of 

the expert panel. The final document covers off the 

recommended approach to pressure injuries for people 

living with an SCI. It was coordinated and funded by ACC 

which was great to see. 

—Bob Symon 

Once you get a pressure injury 

you never recover back to the 

point to where you were prior 

to having that injury.


Prevention is your first 

and most powerful tool. 

What is the impact of a pressure injury? 

—Bob Symon 

Pressure injuries can have a significant impact on a 

person’s health and wellbeing. And that has a flow-on 

effect. When I go onto bedrest, my care plan must change, 

support increases. My role within the family changes 

from an enabler (Dad the taxi) to a dependent. My mental 

health deteriorates. The number of people required to be 

involved, organisation of appointments, the financial cost 

to my family, and the health tax dollar spend must 

increase. Any pressure area is a life changing event. 

that basic knowledge can give you a big head start. That 

also means keeping on top of the best practice, an area of 

SCI that people don’t know a lot about. 

I’m looking forward to the next iteration of the consensus 

statement with ACC and the opportunity to contribute in 

the expert panel once again. It is providing very helpful 

and much-needed information in an accessible format for 

any person living with the effects of spinal cord 

impairment. 

Recommended 

approach 

to pressure 

injuries in SCI 

If people sustain a pressure injury for the first time, 

what advice would you give them? 

You know your body best, however don’t try and manage it 

by yourself. If you’re not experienced in pressure injuries, 

then don’t try to lead your own recovery because your pool 

of information can be dated or wrong. It will put you in a 

position where you make if not wrong decisions, not the 

best decisions and then you will suffer from the pressure 

injury for a longer time. Trust the people that deal with 

pressure injuries, day-in, day-out. Seek out their advice. 

The first thing I would recommend is to be aware of what 

you can do to prevent a pressure injury happening in the 

first place. I have been very cautious my entire life but I 

have still had three serious pressure injuries. All of them 

have been situations where they are unavoidable. Things 

have happened that I just didn’t know about. 

Prevention is your first and most powerful tool. The 

second one is if you notice that you have a pressure area 

in a routine check you must identify the cause otherwise 

you will put yourself in the position where you are 

aggravating that injury. You need to know why it is there. 

Seek immediate advice on best treatment practice for the 

pressure area. The third thing that you need to do is to get 

someone to advise you on the best ways to avoid that 

injury going forward. It might be from an occupational 

therapist, physiotherapist, or your GP. I would follow their 

advice closely and I would continue to get it checked until 

it is fully healed. 

How else can people prevent pressure injuries? 

Read the Pressure injury 

in spinal cord injury: 

consensus statement 

www.acc.co.nz/assets/ 

acc8305-pi-sci-consensusstatement.pdf 

Having that knowledge before they occur is important. 

You need to understand the impact they can have on your 

life. It not only impacts on you, but it can have a profound 

impact on your whole family. Having that knowledge 

about what they represent and knowing your own being is 

crucial. Just things like basic severity of pressure injury, 

and skin return. So, when you engage with your doctor, 

you can engage with them from a point of view that isn’t ‘I 

don’t know what that mark means’, you can actually say 

how the skin returned within two seconds of pressing it, 

and whether that is normal or not normal. Just having


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From Tragedy to 

Representing NZ 

on the World Stage 

The remarkable comeback of NZ Winter Paralympian Aaron Ewen 

THE NEED FOR SPEED: Aaron Ewen is fearless in Para Alpine skiing. Credit: Getty Images / Paralympics NZ 

Aaron Ewen is sitting in the snow at the top 

of Mt Ruapehu and the feeling is hard to put 

into words. 

Only six months after suffering a life-changing 

injury – and hearing those unforgettable words ‘You’ll 

never walk again’ – it’s an emotional experience to be in 

this environment. 

For the first time since his injury, he feels free. 

“When I first turned up to the mountain it was unreal,” 

says the happy-go-lucky 25-year-old. 

“The fresh air, looking at the view, all of that, it was such a 

great experience for me. 

“But man I sucked. My mate spent the whole time picking 

me up off the ground. Cheers to Cole. It probably wasn’t 

the best day for him.” 

He left the mountain feeling sore and deflated. 

But that day ignited Aaron’s love for sit-skiing and there 

was much more to come. 

“I made a silly mistake” 

As a teenager Aaron was a promising mountain-biker. 

In February 2013, shortly after his 16th birthday, he 

suffered a huge crash at one of the national rounds, 

sustaining a spinal cord injury which left him without 

movement in his legs.


He was at a race in the Hunua Ranges in Auckland. He 

was tired and he had a preventable crash. 

“It was towards the end of the practice day and I made a 

silly mistake,” he says. “I ended up wrapping myself 

around a tree.” 

Aaron was lying prone on the trails. He was scared and in 

shock. He knew that he’d suffered a major injury and he 

couldn’t move. 

He was taken by ambulance to Middlemore Hospital 

where he spent six days before being transferred to the 

Auckland Spinal Rehabilitation Unit in Otara for a five 

week stay. 

“They helped me with physio and adapting to life in a 

wheelchair which was mean, but I was still pretty 

determined that I was going to walk again.” 

“A turning point in my rehab” 

The first thing Aaron noticed when he arrived at the 

Auckland Spinal Rehabilitation Unit was that he was the 

youngest person in the Unit by some distance. 

He felt fortunate that he was only in hospital for such a 

short time as it meant he could start physiotherapy and 

try to make some gains. 

“Most people lose everything and have to start from 

scratch,” he says. 

“I was quite lucky with the whole rehab situation because 

I hadn’t lost too much muscle and body weight. Usually, 

you spend more time in hospital and you waste away. 

That made the physio a lot easier and I didn’t have to 

rebuild the muscle.” 

—Aaron Ewen 

I needed to stop being in 

denial. About five weeks in I 

was still like ‘I am definitely 

going to walk again’. 

His physical development wasn’t the only rehabilitation 

going on. He was also taking on the mental battle. 

For a young man who had been fit and active his whole 

life, it was hard to accept he’d be in a wheelchair 

going forward. 

“I needed to stop being in denial that it was going to get 

better. About five weeks in I was still like ‘I am definitely 

going to walk again’,” he says. 

“It’s a weird one. Most injuries you can see an end point 

but this one there is no end point”. 

“Half a year went by and my old man told me you have got 

to accept that it is what it is and move on, otherwise you 

are going to be stuck in the same place. That was a 

turning point I guess.” 

Aaron encourages anyone going through rehabilitation 

from a major injury to take their time. 

Aaron’s life was turned upside down when he sustained an SCI in a mountain-bike crash. Credit: Getty Images / Paralympics NZ


Belinda Ewen could not be more proud of her son. Credit: Getty Images / Paralympics NZ 

“I still have the record of the fastest out [of the Spinal 

Unit] which is sick, that’s my claim to fame,” he says with 

a laugh. 

“But I definitely struggled when I left and got back home. I 

needed more time.” 

ACC has played a leading role in Aaron’s rehabilitation. 

Finding a new passion 

One day, Aaron got a call from Cole, a mate he knew from 

mountain-biking. He said ‘we’re going skiing at Turoa 

this weekend and you’re coming too’. 

Aaron had a ski lesson and his new passion was born. 

“Thanks heaps to that family who did that for me,” Aaron 

says. 

It was important that he wasn’t treated any differently 

following his injury. His good friends still took him 

everywhere and didn’t bubble wrap him. His parents were 

the same. 

“That helped heaps. I was treated just like everybody 

else.” 

Sport has always been a big part of Aaron’s life. He needed 

to fill that void. 

He stayed positive by keeping active and hanging out 

with mates. 

“I wasn’t positive all of the time,” he laughs. “The longer 

the rehab went on, the better it got. Finding sports and 

hanging out with mates proved to be huge for me.” 

He moved to Wanaka for the 2015 ski season, he spent a 

few months at the Cardrona Alpine Resort mastering the 

sit-ski. 

Flying the Kiwi flag 

—Aaron Ewen 

Finding sports and hanging 

out with mates proved to be 

huge for me. 

Fast forward to 2022 and Aaron competed at the Beijing 

2022 Paralympic Winter Games. 

It was a hugely proud moment to be named alongside 

Paralympians Adam Hall and Corey Peters. 

“I was stoked to be named in the New Zealand team and 

represent the Kiwis overseas,” he says. 

He finished with an 11th place in the Men's Downhill 

Sitting and ninth place in the Men's Slalom Sitting and 

Men's Super-G Sitting. A great effort. 

Aaron loves everything about the sport. “Skiing is a fully 

independent sport where you can drive up the mountain 

by yourself and then drive home which is what I love – it’s 

full freedom.” 

Aaron, who hails from the small Waikato town of Tuakau, 

spends most of his year working as a bike mechanic.


What Can I Do? 

Our new column which highlights ways people can help 

What Anne Did 

For sale: delicious, rich christmas cakes just $40, with 

all profits going to the New Zealand Spinal Trust, a 

charity close to my heart. 

This story starts in 2019 when Anne Prescott’s partner of 

25 years had a motorcycle accident which resulted in 

paraplegia. Kevin spent three months at the Burwood 

Spinal Unit for recovery and rehabilitation. And Anne 

was there for most of it – supporting Kevin’s efforts and 

working out her own new future … everyone’s affected by 

a spinal cord impairment. 

GIVING BACK – Anne’s contribution to the NZST from selling 

her cakes is well received. Credit: Su Marshall. 

We get asked this a lot. Sometimes it’s more 

of an existential question, but often the 

person genuinely wants to find something 

concrete they can do to help, to feel useful, to 

make a positive difference … and so, here’s 

our new regular column highlighting 

different ways folks have found to ‘do 

something’. 

“It was a struggle. Coming to terms with it. It’s certainly 

been tough telling other people – friends and that … some 

people probably still don’t realise the impact it has! 

But I do know that the NZST team were really supportive 

– even when I wasn’t ready to talk about it, they made 

sure there was someone there. And Kevin found them 

really helpful - just chatting about things like chair 

maintenance, work options, parking permits, housing 

modifications, managing pain – the sorts of things that 

become part of life when you’re in a wheelchair. But also 

about cars and dogs and home renos over a coffee. 

—Su Marshall 

At home in her commercial 

kitchen Anne went to work in 

the lead up to Christmas 2020. 

THE FINAL PRODUCT – Anne’s cakes were a big hit at Christmas time. 

Credit: Su Marshall.


When we got home, I wanted to do something to give 

back. And since baking is my ‘thing’ I thought – ‘Why not 

sell Christmas cakes?’” 

And sell them she did. 

At home in her commercial kitchen Anne went to work in 

the lead up to Christmas 2020. Cakes were sold to family 

and friends, and through the NZST website. A very 

healthy $1,000 was donated. 

But Anne decided she could do more. So in 2021 she went 

out and found sponsors for butter, eggs, flour, dried fruit 

… all the ingredients necessary for a delicious Christmas 

cake. She wheeled and dealed – anything she couldn’t get 

outright donated, she got a discount on! Even the postage 

and packaging costs were discounted. 

And then she marketed her cakes on the NZST website, to 

family and friends, and to businesses to give as corporate 

Christmas gifts – over 80 cakes (!) were bought to give 

away with Dispute Solutions, Peak Portfolio and Stephen 

Hill Motors quick to get on board. When Permobil NZ got 

in behind the idea, Anne wondered if she’d bitten off 

more than she could chew … “I’d better get cracking in 

the kitchen!” 

In early December, when Kevin came down to Burwood 

Spinal Unit for a check up, Anne came with him and 

brought a “presentation cheque” with her. The NZST 

team gathered for morning tea (a cuppa and a piece of 

cake, of course) and the big reveal … it was still a secret to 

us just how much Anne had raised. She told us all she’d 

baked over 180 cakes! A huge whoop went up when Anne 

turned her ‘cheque’ around to show a final donation 

amount of $5,700! Wow! 

Anne believes she’ll be ready to bake again at the end of this 

year… once she’s had a break. Her cakes are decidedly yum 

… our team will all be getting their orders in early. 

PS Anne also makes delicious preserves, jams, 

muesli and sauces - check out her range here: 

www.bottlingshed.co.nz


Meditating my way 

Through Pain 

NZ Paralympian Gareth Lynch explains how meditation has helped him 

ON THE WORLD STAGE – Gareth Lynch with the Wheel Blacks at the 

Korean Zonals. Credit: Gareth Lynch 

The SNN recently met with Gareth to learn 

more about his lived experience with spinal 

cord impairment (SCI) and his time at the 

2020 Paralympics in Tokyo. 

In 2016, Gareth sustained a C5-C6 injury while at 

university when he jumped off a roof and into a 

swimming pool. 

Since his injury, Gareth has significant pain issues caused 

by a number of factors including his body overheating. 

You would think a fast aerobic sport like Wheelchair 

Rugby would be out of his reach – especially at 

Paralympic level. But as you will find from this article, it 

hasn’t held him back. 

How does he do it? 

Congrats on becoming Paralympian #219. How would 

you describe your Tokyo Paralympics experience? 

Attending the Tokyo Paralympics was an interesting 

experience, it was unfortunate that Covid made it such a 

restrictive process. We were entirely confined to the 

village unless we were training or competing. We had 

very limited interaction with other countries or athletes, 

which would have been a highlight. Being able to 

experience it all with the team was great, and it was mind 

blowing to see the different athletes, a real eye opener. 

How long has it been since your injury? 

—Gareth Lynch 

My SCI journey has been five 

years of really thinking deeply 

when I’m having issues. 

About five and a half years. After my accident I returned to 

the University of Canterbury to complete the remaining 

two years of my engineering degree. After finishing my 

degree, I applied for a number of jobs in Auckland and 

received a few interesting responses. For example, one


company were interested in my application, but their office 

wasn’t accessible. However, Riley Consultants in Auckland 

offered me a position as a Water Resources Engineer. I’ve 

been with them for three years. The work I do involves 

dams of all types, stormwater infrastructure design and 

flood assessments. I work full time and have adjusted 

reasonably well. But I find sitting in my chair in the same 

position can be tiring and increases my pain levels. 

Clearly pain has been a factor since becoming a C5-C6 

tetraplegic. How would you describe the impact? 

I have an ASIA B classification score and the sensation in 

my body has been significantly altered since my injury. I 

often feel intense neuropathic pain, burning sensations, 

tight muscles in my legs and lower back. The pain 

fluctuates in intensity with respect to medication levels, 

my physical activity, my internal body temperature and 

state of mind. These factors all play a part in how I 

experience this specific type of pain. 

I also get intense bladder spasms which can be extremely 

painful and trigger autonomic dysreflexia (AD). The 

spasms can last from 15 seconds to a minute and occur at 

random times. This usually happens when my body 

temperature rises, if I go over a big bump in my 

wheelchair or lift something uncomfortably heavy – these 

can all be triggers. 

What was your pain treatment method upon 

discharge? How did you find the medication? 

In the Burwood Spinal Unit, I was prescribed gabapentin, 

unlike some people with SCI, I experienced very few side 

effects. Over the five years I’ve been taking it, I have tried 

to reduce the dosage, but when I have, the burning pain 

intensifies and becomes unbearable especially when I go 

to bed. The dosage of gabapentin I take hasn’t changed so 

I think I may have become tolerant to the medication over 

time as it often feels like it is not having the same effect. 

Was there anything else at the time identified as 

potential treatment? 

I wasn’t really told of other medications, or treatments 

but gabapentin was apparently the most appropriate 

medication for nerve pain. No one could actually explain 

why I had pain. 

Editor’s note: In spinal cord injury patients, chronic pain is 

common. It impacts about 70 percent of patients with 

one-third of these experiencing severely intense pain 

impacting on mood, functioning, and quality of life. 

Has your experience of pain changed since your 

discharge from the Spinal Unit? 

I guess I have become better at dealing with pain, in 

particular managing bladder spasms. At the beginning, 

the spasms would happen almost daily but now they only 

occur about a couple of times a month. 

The issues you experienced with body temperature 

– was this something you happened upon? Was this a 

learning experience? 

My SCI journey has been five years of really thinking 

deeply when I’m having issues. What are the triggers? I 

Gareth Lynch highly recommends using the the Waking Up: 

unlock your mind app. Credit: Gareth Lynch. 

have had the opportunity to think deeply about a range of 

issues and learning about what the triggers are, as well as 

having awareness of how my body reacts under different 

conditions. When I sleep, I usually don’t have any 

blankets on my abdomen, just my upper body. I use a 

sheet on cooler nights. This does wonders, if I use a duvet 

on my entire body, my bladder will likely overreact and 

set off on its uncomfortable tirade. 

Humidity can be an issue as it’s more difficult to cool 

down and adds an extra element to be aware of. I will 

check in with myself and plan ahead. Exercise is 

important to me, and I continue to train for my rugby 

team which means ensuring I’m as cool as I can 

comfortably be by having the aircon on in my car before I 

get to the training session and wearing cool and 

comfortable clothing. I always keep a water spray bottle 

handy for the days when its particularly warm or humid, I 

can spray my face and body which acts like sweat (as I am 

unable to sweat now). I’ve become better at understanding 

my body and recognising when to take action before I get 

too uncomfortable. But when I am experiencing bad 

bladder spasms, I’ve found cool showers to be the best 

solution to reduce my temperature and relax my body. It 

took me a while to work out a solution! 

Do you deal with persistent pain differently or more 

effectively now? 

Yes definitely. I am also vigilant about my temperature for 

any sharp rises. I constantly assess my pain levels from 

both a physical and psychological point of view. The two are 

closely linked in my experience: physical pain sensations 

affect you mentally and can bring your mood down, ruining 

otherwise positive moments. I’ve figured out a number of 

coping strategies, I keep physically active, I try to have a 

positive mindset and the importance of maintaining 

regular contact with my social network.


Learning how the mind works was key for me and using 

tools developed through meditation practice enables me to 

look at things holistically. There is no point in spending 

time dwelling on negative parts of my past, so I try to keep 

my mind in the present. By doing so, I found myself coping 

better with constant adversity faced by all who have an SCI. 

How do you do that? 

Prior to my SCI I came across a few meditation apps, but I 

got into it more deeply after my injury. I find meditation 

very beneficial, in particular learning and practising 

mindfulness. By this I mean having an awareness of what 

thoughts, sensations and emotions are arising in my 

mind in the present moment. 

Through meditation I have been able to understand that I 

am not responsible for the next thought that pops into my 

mind, thoughts inherently arise and disappear. Not many 

people realise this – in western cultures we commonly 

accept the chatter in our brains as our truth and 

self-identify with our thoughts whether they are good or 

bad. But once you recognise that thoughts arise on their 

own you gain control of how you want to respond, and you 

are no longer completely at their mercy. I am far from an 

expert in any sense, but this is what I have learnt and from 

my experience it is reality. For example, I am getting better 

at identifying when I am overreacting to something 

negative, for example pain or an incident out of my control. 

Mindfulness is a powerful tool which allows me to 

interrupt thoughts and concentrate my attention on 

something else, for example breathing. Focusing on the 

breath takes attention away from the pain or negative 

thoughts. It’s easy to say and sounds simple but is difficult 

to put into practice at first. It’s a skill that can be learned, 

the more I practice, the better I become and the more 

benefit I gain when I am able to apply it. 

I am often able to recognise when I’m experiencing less 

pain than usual and that it’s possible to be immensely 

grateful to be in less pain than I usually experience. 

Meditation teaches me the skill to recognise and pay 

deeper attention to my emotions. There is no limit to how 

deeply one can feel grateful (for example being in less 

pain than usual, or for the people you love in your life). If I 

can focus on a positive emotion like gratitude, I feel 

better. At first, I wasn’t very good at doing this when I first 

started my journey into meditation, but over time I slowly 

recognised how the skills I learnt helping me to improve 

my life experience. 

Regarding mindfulness meditation – do you practice 

every day? 

It was while I was at the University of Canterbury I was 

introduced to the ‘Waking Up: unlock your mind’ app by 

Sam Harris, the university also ran free classes. Using the 

app helps me develop and sharpen my skills to recognise 

and interrupt negative thoughts and prevent 

catastrophising, while allowing me to be intentionally 

grateful for my life and the people and things in it. At the 

beginning I would use mindfulness daily but now I find 

three times a week is sufficient unless I have something 

specific to deal with or if I’m upset. Then I make time to 

practice mindfulness. I usually spend 10 minutes in the 

Mindfulness is a powerful 

tool which allows me to 

interrupt thoughts. 

morning or at night, but find great benefit from longer 

sessions when I can fit them in. 

After my SCI, meditation tools helped me heal mentally, I 

felt a devastating loss of my sense of self. Prior to my 

injury I would have described myself as an active person 

with a number of talents. Post-injury I was no longer able 

to do the things I prided myself on. Meditation helped me 

identify the inner voice in my head while I was grieving 

the loss. This voice would be very negative, telling myself 

that I am now a lesser person because my body doesn’t 

function the same anymore. By identifying the thoughts, 

I noticed my internal dialogue and was able to address it 

using compassion and logic. It was extremely powerful in 

changing my self-beliefs and helped me to love and accept 

myself again. 

What would you say to your peers if they experience 

pain issues? 

• I would encourage them to get a range of medical 

opinions about SCI and the effects on the body. Learn 

from the experts. Especially the knowledge in the SCI 

community. 

• I highly recommend the Waking Up: unlock your mind 

app – it’s one of the richest sources of knowledge about 

the human experience – it has a 30-day introductory 

course, a wide variety of guided meditation styles, a 

theory section covering a vast range of topics, and in 

depth conversations between Sam and other experts. 

• Talk to others with SCI and find out what helped them. 

Wheelchair rugby has been such an amazing pathway 

for me and has enabled me to connect with others with 

an SCI. I attribute so much of my growth, independence 

and my ability to cope, in the form of life tips and tricks 

from the people I’ve met through rugby. It also provides 

awesome social opportunities. I recommend any 

person with an SCI to connect with their local 

wheelchair rugby club or sports club and talk to others. 

• Pay close attention to your body, learn about potential 

triggers both physical and psychological, be 

intentional about what you want. 

• Be curious and open to your experiences. 

For more information about the Waking Up app 

go to Google play store and Apple App store 

to download the app. 

https://wakingup.com/ 

—Gareth Lynch


F5 Corpus VS 

More than just mobility. 

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learn more! 

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Conquering a New Challenge 

Tetraplegic Andrew Leslie completes a 5km run 

HE MADE IT – The moment when Andrew Leslie completed a 5km run. Photo credit ACC. 

Two years after sustaining a spinal cord 

impairment Wellington tetraplegic completes 

a 5km run. 

On 18 March 2022, Andrew Leslie stumbles to the finish 

line in an ungainly fashion to a warm round of applause. 

He has nothing left in the tank. 

“I’m exhausted to be honest,” he says minutes after 

completing a 5km run in front of his friends and family 

in Karori. “I completely emptied the tank. It wasn’t pretty 

at times, but what a sense of accomplishment.” 

Two years ago, the 49-year-old broke his neck in 

Wellington's Mākara Peak Mountain bike park. He 

damaged his spinal cord and became a tetraplegic. 

When he was in an induced coma in ICU his family were 

told to be prepared for Andrew being in a wheelchair for 

the rest of his life. It was a reality he never accepted. In 

2021 Andrew marked the one-year anniversary by 

walking back to the place of his injury to find closure and 

“put it to bed”. 

One year on, he has achieved the unthinkable. It has been 

a challenging and rewarding journey. 

It was a really emotional 

moment because I knew 

I had unlocked it. 

—Andrew Leslie 

“When I go back two years to where I was lying in the 

Burwood Spinal Unit to where I am now, I can’t believe it. 

I feel extremely lucky that I have had this sort of recovery. 

I know it doesn’t happen for everyone. Every spinal cord 

injury is different.” 

ACC has played a leading role in Andrew’s rehabilitation, 

helping him every step of the way. 

“The ongoing support from ACC has been a real plank in 

my recovery,” he says. 

“I love everything about running, I love how it feels. I love 

being in those environments. I love the fitness I get from it… 

to get that ability back has been an emotional experience.”


Learning to run again 

Andrew had a seed of hope after coming out of hospital. 

“I had a remarkable recovery within hospital. I was able to 

get from my wheelchair to walking and that gave me a lot of 

confidence. That I could continue to improve and recover.” 

It was then he floated the idea to his physio at the time. It 

was a well-planned and deliberate process. Andrew 

started in a highly supportive environment. He began in a 

hydrotherapy pool. He progressed into a rehabilitation 

gym at Keneperu Hospital and then onto a treadmill 

where he was supported by a harness. 

Almost a year ago he took his preparation out on the park. 

It was a big milestone. “It was about having enough 

confidence so I could push it a bit further in an 

unsupported environment,” he says. 

Over the past few months, Andrew has gone from 

restricted movement to the running motion he can 

complete now. 

“In the early days I was trying really hard to run. I would 

go from walking to tell myself ‘try to run’. Looking back at 

some videos on it, it wasn’t a run. [laughs]. It was kind of 

like I was marching. My knees were a bit higher than my 

walking gait. It wasn’t happening. Which is a similar 

place to where I was before I started to walk. 

“The question kept popping into my head so how do I run? 

My body wouldn’t flick into running. I would try to make 

it run. It just wasn’t happening.” 

“A watershed moment” 

Andrew was getting increasingly frustrated. Around the 

same time, he was having recurring dreams about running. 

“I could feel what it felt like to run. My brain was trying to 

work it all out. I just needed to find the right focus and 

approach to let it all happen.” 

He described it as a “watershed moment”. He said to 

himself ‘maybe you are overthinking this’. 

“I felt like I just needed to let go. I had to let my body run. I 

knew it was in there somewhere I just had to find the 

mental cue to unlock it.” 

Andrew researched other methods to progress his 

rehabilitation. He has invested in neurophysics, yoga 

therapy to go with physiotherapy. It was a game changer. 

“The theory is that your body knows what to do, you have 

just got to have confidence in it for that to happen. Your 

brain can find a way to send the messages where it needs 

to. You have got to move aside and let it happen.” 

There was a moment at Karori Park – using all of those 

strategies he had learned - where it all clicked. “It was a 

really emotional moment because I knew I had done it, I 

had unlocked it. All of a sudden it felt like running.” 

“You can always improve your position” 

From there Andrew built up to running 100m, 1km and in the 

build up to the run on Friday 18 March he completed 4km. 

He says being able to run again has helped his 

self-esteem. “To know that I can challenge myself and 

A FAMILY AFFAIR: Andrew with his dad Arnold and mum Marie. His sister 

Helen ran the 5km with him. Photo credit ACC. 

meet those challenges. That is huge for my confidence.” 

Hans Wouters, the CEO of the New Zealand Spinal Trust, 

described Andrew’s feats as “remarkable”. 

“From being told he might never walk again to running 

5km in only two years is an amazing achievement,” 

says Hans. “This is testament to Andrew’s remarkable grit 

and determination.” 

“The New Zealand Spinal Trust is proud to have played a 

role in Andrew’s rehabilitation during this time. Each of 

the 220 spinal cord impairments sustained by New 

Zealanders each year are different, and everyone is on 

their own unique journey to improve their overall health. 

“Andrew’s achievements in such a short space of time are 

quite remarkable.” 

Andrew is sharing his story to help others. He wants to 

show people what is possible. “Maybe there is something 

in my story for others. I’m not suggesting that everyone 

with a spinal cord injury can run. Everyone is on their own 

unique pathway. The message I want to convey is don’t 

stop trying. Believe that you can improve your situation.” 

Making a difference for others 

Andrew is the CEO of Recreation Aotearoa. They are 

focused on making a difference to New Zealanders living 

with a disability. 

He is recruiting a new staff member who will focus on 

improving the accessibility of active recreation. This will 

be primarily outdoor recreation and also focus on 

facilities and play spaces. 

“Because of the work I do I am fully aware that I can be 

influential in changing the system to help improve access 

for people with a disability into recreation.” 

Andrew says being in the outdoors can be a hugely 

important part of a person’s rehabilitation. “It fuels the 

mind, body and soul,” he says. “There is a strong desire to 

make a difference in that area around Aotearoa. In my 

role I act as a connector and a facilitator. 

“It has been huge for me. I want others who are living with 

a disability to have that experience.”


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Meet Our Team: 

Rachael Henderson 

We learn more about the remarkable life of our Team Administrator 

A LOCAL LEGEND – Rachael Henderson (second from right) is a popular member of the NZST Team. 

Every time the Winter Paralympics is staged, 

it brings back a flood of memories for Rachael 

Henderson (nee Battersby). It takes her back 

to a time when she was on top of the world. 

We took a walk down memory lane with Rach 

to talk about becoming a three-time gold 

medal winner and life these days. In 2022, 

the NZ Para legend is a mother of three kids 

and a valued member of our team. 

What is it like to look back as a Paralympic champion? 

How often do you get your medals out? 

My medals are framed on our wall at home. Being a triple 

gold Paralympic medallist is just a part of who I am! 

When I watch the Paralympics on TV, I get quite 

emotional. I can vividly remember the butterflies and 

—Rachael Henderson 

Everybody who is part of our 

team is so kind, genuine and 

passionate about what we do. 

the excitement of racing. I think everybody could learn a 

lot from watching the Paralympic Games. To be 

reminded where there’s a will, there’s a way, and never say 

never! There is always somebody worse off or dealing with 

something we can’t see. I grew up being told, “can’t was a 

swear word”. I’m proud to be a Paralympic champion. I’m 

proud of my journey and the results of those before me, 

and those who have followed.


Rachael Henderson was world class in her prime. Photo credit Getty Images / Paralympics NZ. 

What was it like to be named in the NZ Winter 

Paralympics team? 

I used to ski with some of the National Team members, 

and thought they were amazing. I was in awe of their 

abilities, and knew I wanted to represent NZ at a 

Paralympic Games. I wanted to be a part of the ski 

racing world, and to ski fast. I was named in the team 

to represent NZ at the 1998 Winter Paralympics in 

Nagano, Japan. 

It was an incredible experience. I was overwhelmed at 

the level of abilities. These athletes were there to test 

abilities, to overcome fear, to see what could be achieved 

with determination and courage. And it was here I set a 

goal to reach the top and win gold! 

Two years later at the 2000 World Championships in 

Anzere, Switzerland, I won bronze and silver. I was on 

track to winning my gold! 

But after a couple of friends were killed in separate skiing 

accidents, I started to doubt my abilities, and was terrified 

of crashing and dying. I had a really hard time with my 

training and racing throughout this season prior to the 

2002 Games. 

I tried so hard to be positive and believe, but it was a real 

rollercoaster season. So many friends and family, and 

people in the community had helped fund my skiing, and 

I was so worried I would let everyone down. It was all in 

my head. I know that now, but at the time, I was really 

struggling. So, I came home, continued my training, and 

spent time with the NZ Sports Foundation. We focused 

on my mind, and visualisation skills, and believing in 

myself and my abilities. 

When I went back to the States for my last year of training 

and racing, I remember the feeling so well. I felt like I was 

ready for whatever came my way. Nothing was going to 

knock me over. Throughout the whole season – I led the 

World Cup Circuit and was on the podium at every race! 

So going into the Paralympics, I expected to do well. I 

knew gold was very much within reach. 

Your results at your second Games were amazing – 

three gold medals – were you blown away by what you 

achieved at Salt Lake City in 2002? 

I knew I could win gold in 2002. I was in absolute control 

of my results. My attitude and confidence would be the 

win or loss. I look at my skiing career as a stepping stone 

process. I started at the back of the pack fighting an 

unfair factor system, to slowly reaching the top and 

dominating throughout my last year of competition. For 

the 2002 Salt Lake City Paralympics I was there to win! 

I’m incredibly proud of my results in Salt Lake City. 

But I’m also so proud and grateful for all the 

Paralympians who represented New Zealand in the years 

It’s the most incredible 

feeling to be in the cold, 

ripping down the hill. 

—Rachael Henderson


I recently saw a photo 

of a woman in the start 

gate with no arms, and I 

couldn’t stop crying! 

—Rachael Henderson 

before me. We were not funded as well as other countries, 

and disabled athletes were never seen as equals alongside 

our own able-bodied athletes. 

But that has changed, and I like to feel that we all had a part 

to play in how Paralympic athletes are now seen, funded, 

and respected. Funding my training and racing was hard, 

but on reflection, I wouldn’t change a thing. I was in it to 

win it, and it was all on my shoulders. I had support from 

my mum, family and friends, and people within the 

community. Without a doubt – it was a team effort! 

How did you first get involved in Para skiing? 

At six years old, I was climbing a tree with my twin sisters. 

I got up but couldn’t get down. Mum stood at the bottom 

and said “if you can get up – you can get down”. She 

wasn’t sure if that was the right way to approach the 

situation – so reached out to CCS (now known as CCS 

Disability Action) for some advice. They sent her some 

details on Disabled Skiing, and the rest is history! I have 

so many incredible memories growing up in this 

environment. 

What do you love about skiing? 

It’s exhilarating. It’s the most incredible feeling to be in 

the cold, ripping down the hill. Our three children have 

been skiing since they were very little. I love spending 

winter days exploring the mountains with family and 

friends. The conversations, and family time together is 

special and full of memories. I now find myself standing 

at the bottom of the chairlift at the end of the day trying 

to get them back to the car – but they desperately try for 

the last lift of the day – the same as I was at their age! 

Take me back to the day of your accident, 

what happened? 

At four years old, I wasn’t wearing a seatbelt, and the door 

wasn’t closed properly. As we went around a corner, I 

rolled out of the car with barely a scratch on me. I ended 

up with a brachial plexus injury. My left arm was 

completely paralysed. At the time, I had therapy to see if 

any nerves would repair and get some movement back in 

my arm. But I never regained any movement. The first 

night mum and dad took me home from hospital, mum 

tried to cut up my food. I said: “Don’t do that – I can do 

it.” Mum knew I would be ok! 

Rachael Henderson: “Our NZ Spinal Trust team is one of a kind.” 

You decided to have your left arm amputated, how 

hard was that decision? 

The first day I met my coach in Winter Park in Colorado – 

he asked me what movement I had in my arm. I said 

nothing. And he asked: “Why have you still got it?”. After 

spending three months training five days a week with the 

most dedicated athletes from all over the world, I saw 

everyone taking arms and legs off, getting out of 

wheelchairs, and tearing up the snow day after day. It was 

then that I knew I would have my arm amputated. I was 

also very self-conscious of my arm, and people would 

stare and ask questions. Since having it amputated, I feel 

like there is nothing to look at!! Mum always knew I 

would make this decision, but she wanted it to be my idea! 

What is a typical day for you these days? 

I’m a busy mum to three beautiful children. My day starts 

at 4.15am when I train a 5am circuit at Saints Functional 

Fitness in Rangiora. It’s such a great way to start the day! 

I then juggle work at the NZ Spinal Trust, and very busy 

afternoons with my three kids who are all sport mad. 

Editor’s note—The brachial plexus is the network of nerves 

that sends signals from your spinal cord to your shoulder, 

arm and hand.


You have been working part-time with NZST for 

nearly five years, what do you enjoy about it? 

The NZ Spinal Trust is one of a kind. Everybody who is 

part of our team is so kind, genuine and passionate about 

what we do. We make a huge impact on people’s recovery 

as they navigate a whole new way of living with a spinal 

cord impairment. I feel lucky to be part of a team that 

cares so deeply. 

winning three gold Paralympic medals. We are all in 

control of our lives. Our attitude will determine whether 

we win or lose, whether we’re happy or sad! We can all 

learn from each other. Be kind - we need more kindness 

in our lives. 

What advice do you offer to others who have had a 

moment of adversity? 

I guess we all face some form of adversity - different 

struggles through life. Some you can see, and some you 

can’t. We must remember to smile, be kind and 

supportive of everybody. We all have a story to tell!! I 

often find it hard when people call me inspiring. I’m just 

out there doing my thing. I never asked for one arm, but it 

has also never held me back. I feel fortunate and proud to 

be part of the disabled world - to have travelled the world 

representing New Zealand, making lifelong friends, and 

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All For a Good Cause 

Seven legends brave the wet and the cold to ride for 24 hours 

A real team effort – thanks to everyone who made the Arapuke fundraiser happen. Credit: Graeme Brown - Vision Media. 

You don’t have to be mad to support the 

New Zealand Spinal Trust (NZST) but 

sometimes it helps. 

On 5 February to 6 February (Waitangi Day) a group of 

likely lads put their bodies on the line. They rode the 

Arapuke Mountain Bike Trails in Palmerston North for 

24 hours. 

The fundraiser was led by the Glentworth family. 

Jayden Glentworth was a patient in the Burwood Spinal 

Unit two years ago following a mountain bike accident on 

the Arapuke Trails. 

It was a life changing moment and it has been a 

challenging time for Jayden and the Glentworth family. 

But they are not looking back. Jayden, his dad Mark, their 

mates Brenton, Chris, Dave, Andy and our CEO Hans were 

—Mark Glentworth 

Spinal injuries can happen 

to anyone at any time and to 

people from all walks of life. 

back at the scene of his crash to make a positive difference 

for those who helped them. 

Now riding for 24 hours straight as a group (each of the 

guys rode for 8 hours – they would ride for one hour and 

rest for two hours) is a hard enough challenge in itself, 

and then there was the weather. It rained and rained. And 

it rained. For almost the entire duration the conditions 

were miserable.


Andy, Jay and Hans having fun in the rain. Credit: Graeme Brown - Vision Media. 

Still the guys didn’t complain. They rolled up their sleeves 

and got stuck in. 

In all, they raised more than $23,000 for the New Zealand 

Spinal Trust. An incredible effort. 

At 3am, in the relentless rain, Mark and our fearless leader 

Hans stopped for a quick chat on what it was all about. 

They were soaked to the skin and had smiles as wide as 

their faces. 

“We have just come back from an hour bike ride up and 

down the hill,” Hans said dryly, with a laugh. 

Mark chipped in: “We’re just about to go for another 

hour-long ride up and down the hill.” They both laugh. 

“We’re here to support the New Zealand Spinal Trust,” 

says Mark. “There are two reasons for this ride: the first is 

fundraising so they can continue their awesome work. 

And secondly, it’s about raising awareness of the 

incredible work that they do. 

“Spinal injuries can happen to anyone at anytime and to 

people from all walks of life. We have been directly 

affected by a spinal cord injury. This amazing man [Hans] 

leads the Trust and he has given us and many other 

people incredible support. 

“The Trust is just full of a great bunch of people who we 

love dearly and that is why we are here.”, 

Hans, a keen cyclist, travelled from Christchurch to 

Palmerston North to be part of the event. He wanted to 

show his thanks. 

ALL WRAPPED UP: 

It was wet and cold in 

Palmerston North for 

the ride that went for 24 

hours. Credit: Graeme 

Brown - Vision Media.


“We support positive futures for people who have had a 

spinal cord impairment and their whānau,” he says. 

“A lot of people think that life is just not worth living after 

a spinal injury but if you look at Mark’s son Jayden, it is 

totally worth living. Many, many others have shown us 

that same thing. 

Fuelled by gratitude, everyone had worked hard, had a 

blast and raised a lot of awareness and much needed 

money – mission accomplished! 

“They have found a new path and we support them on 

that new path. 

“It is awesome what the Glentworth family have done for 

us and we are so truly grateful.” 

The money raised will help the Trust pay their 

amazing team. 

The NZST team provide practical and emotional 

support and encouragement to the many New Zealanders 

living with the effects of spinal cord impairment 

including the 220 or so new patients we see each year in 

the spinal units. 

“We work to move forward and embrace positive futures 

and our team are a big part of that journey,” says Hans. 

“As a small charity that needs to fundraise more than 

half of our funds every year, we really do appreciate 

this support.” 

At the end of the 24 hours it was still raining and the 

smiles on the team photo said it all. 

—Hans Wouters 

A lot of people think that life 

is just not worth living after 

a spinal injury but if you look 

at Mark’s son Jayden, it is 

totally worth living. 

You'd go a long way to find a young man with a better attitude than Jayden Glentworth. Credit: Graeme Brown - Vision Media.


New 

Additions 

April 2022 

Mental fitness: build your mind 

for strength and resilience 

every day, 

Dr. Paul Wood, 2021 

Staying mentally fit, and maintaining 

a high level of physical fitness, 

involves hard work, effort, and 

consistency. Our level of mental 

fitness determines how effectively we 

can flourish through adversity, realise 

our potential, and be happier with our 

lives - regardless of what the universe 

has in store. 

Mental stress is the mind's way of 

telling us that what we are attempting 

to perform is challenging our 

resource. When we experience stress, 

we have a choice: we can heed that 

signal and give up - or we can 

recognise the discomfort we are 

feeling is simply nature's way of 

enabling us to rise to the occasion. 

That terrible time: eye-witness 

accounts of the 1918 influenza 

pandemic, 

by Geoffrey Rice, 2018 

A book for our times. New Zealand's 

worst public health disaster occurred 

in November 1918 when around 

9,000 people died in the so-called 

'Spanish' influenza pandemic. Read 

the accounts of 110 survivors 

describing what they saw and what 

happened to them in that terrible 

time when the victims' bodies turned 

black. 

Vaccines & Vesicles: a history of 

smallpox vaccination in New 

Zealand, 

by Claire Le Couteur, 2019 

This book is a history of how the 

government stopped any major 

outbreaks largely through the use of 

imported and locally made vaccines. 

In the 1880s, the Superintendent of 

Sunnyside Asylum in Christchurch 

set up a vaccine station to 

manufacture smallpox vaccine using 

calves he infected with cowpox. The 

government later established a 

vaccine station in Wellington that 

made the vaccine up until the 1960s. 

It is amazing that what now seems 

like an extremely crude product 

protected so many people and, along 

with isolation measures, stopped the 

infection seriously taking hold in 

New Zealand.


Integrating spirituality and 

occupational therapy treatment: a 

practical guide, 

Dr Laura Ayres Hayth, 2015 

Occupational therapy and a 

spirituality-based approach to 

therapeutic intervention are 

naturally intertwined. However, even 

though it is part of the therapeutic 

scope of practice, occupational 

therapists are provided with minimal 

education in spiritual integration. As 

a result, not many practitioners are 

comfortable with this, which is why 

author Dr. Laura Ayres Hayth wrote 

this book. 

The book will benefit physical 

therapists, speech therapists, and 

many other health care professionals 

paving the path for them to help 

usher in a new mind-body-spirit 

wellness paradigm. 

The Coward, 

by Jarred McGinnis, 2021 

After a car accident Jarred discovers 

he’ll never walk again. Confined to a 

‘giant roller-skate’, he finds himself 

with neither money nor job. Worse 

still, he’s forced to live back home 

with the father he hasn’t spoken to in 

ten years. Add in a shoplifting habit, 

an addiction to painkillers and the 

fact that total strangers now treat 

him like he’s an idiot, it’s a recipe for 

self-destruction. How can he stop 

himself careering out of control? As 

he tries to piece his life together 

again, he looks back over his past – 

the tragedy that blasted his family 

apart, why he ran away, the damage 

he’s caused himself and others – and 

starts to wonder whether, maybe, 

things don’t always have to stay 

broken after all. The Coward is about 

hurt and forgiveness. It’s about how 

the world treats disabled people. 

Check out our catalogue!! 

Visit the Resource Centre catalogue 

page – abc.mykoha.co.nz 

All of the listed items are available 

to loan from the Resource Centre. 

We are located on the way to the 

spinal gym, call in and see us! 

Contact Bernadette Cassidy for 

more information 

bernadette.cassidy@nzspinaltrust.org.nz 

or phone: 022 600 6630


Working Well Together 

Living meaningful lives with support workers following SCI 

—Dr Johnny Bourke 

Research suggests that the 

disability support workforce 

is often undervalued, prone 

to burnout, and experience 

disparities in pay and 

working conditions. 

Dr Johnny Bourke is a disability and rehabilitation researcher 

at the Burwood Academy TrustCredit: Dr Johnny Bourke. 

Recently, I was asked to write an academic 

paper on the topic of human connections and 

relationships within rehabilitation. I thought 

this would be a great opportunity to shed 

light on a hugely important relationship for 

many people with SCI - learning to live and 

work with support workers, an area I believe 

requires more attention. 

Following an SCI, a lot of attention is usually given to 

achieving as much functional independence as possible, 

and of course this is a great goal to aim for. However, for 

many people, namely those who live with a great deal of 

paralysis, there are limits on what you can physically do 

without assistance. 

Such people, including myself, often require assistance 

with the most fundamental tasks, many of which are 

private and intimate. For example, without the help of 

another person, many people with SCI simply cannot get 

dressed, mobilise from bed, or prepare food to eat. The 

stark reality is that the actual survival of a person with 

SCI depends on the assistance of another person. 

Support workers also help people with much more than 

tasks and care around the home. The lives of people with 

SCI are exciting, adventurous, and diverse, and support 

workers enable people to assert choice and control over 

decisions in all areas of life. From what people want to 

wear, what food to prepare, to assistance with travel, and 

participation in sports, everyone’s life is unique. 

An overwhelming majority of support workers conduct 

their work with positivity and pride for their clients. 

However, the sector is facing many challenges. The 

amount of disabled people in New Zealand requiring 

support workers, including those with SCI is increasing. 

At the same time the number of community support 

workers is decreasing. Many people in the SCI community 

have told me that finding good quality support workers is 

becoming more and more difficult. Both for the people 

who find their support workers through an agency, and 

those who employ their support workers privately. 

COVID-19 has also put the sector under more challenges 

for a variety of reasons. At the predicted peak of the 

pandemic, a number of support worker agencies expect 

potential workforce reductions of between 10 and 25 

percent. Also, the close physical space between support 

workers and those with SCI increases risk of exposure to 

COVID-19, particularly when many people require 

intimate support needs with reduced physical distancing 

such as help showering and getting dressed. 

Considering all of this, it becomes clear that support 

workers play a critical role enabling people with SCI to 

live a meaningful life. Furthermore, the quality of a 

relationship with a support worker can have a huge 

impact on the overall quality of life for a person with SCI, 

and indeed their whānau. Working together with support 

workers is much more than just completing functional 

tasks. There are many complex factors at play, including 

trust, familiarity and privacy. Below I reflect on some of 

my own experience of working with support workers for 

the past 17 years, and look at some ways people with SCI 

and their whānau can work alongside support workers to 

live positive and meaningful lives.


Learning to ask for assistance 

Clear and respectful communication has been identified 

as one of the most important aspects in determining 

successful support worker relationships. This may be 

communicating the details of tasks you need assistance 

with, and also communicating more broad issues 

regarding your general expectations concerning the scope 

and role of a support worker. For example, how can they 

best work within your home to enable you and your 

whānau to flourish? 

Following an SCI, learning to ask for assistance can be a 

weird and challenging experience, and people can feel 

awkward “asking carers to do stuff”. Support workers are 

often employed to assist with domestic tasks and personal 

assistance: dressing, grooming, food preparation etc. 

However life is much more than just that! For example, 

people travel, they work, have hobbies, play sport and may 

have children and/or pets. People require assistance to 

participate in the areas of life that are important to them. 

People often have to learn both how to ask for something, 

and how much can I ask of them? What things are okay to 

ask a support worker to do? What is reasonable? Can I ask 

them to wash my car? Or help in the garden? What about 

helping me to travel, or find an accessible walking track? 

If your support workers are employed by an agency, the 

company will probably have a policy regarding what a 

support worker can and cannot do. Alternatively people 

who employ their support workers privately might outline 

the scope and expectations of a support worker role in an 

advertisement, and/or have an initial conversation with 

their support workers to establish clear expectations 

about how they can help you to successfully live your life. 

Having support workers in the family home 

As we know, spinal cord injuries do not just happen to an 

individual; the whole family is impacted. It can be 

incredibly challenging for whānau to adjust to having 

support workers in their personal and family space. Having 

people enter into your house every morning and move 

about through bedrooms, bathrooms and kitchens can take 

a bit of getting used to. Research has shown that despite the 

wonderful work that support workers provide, spouses of 

people with SCI can yearn for the solitude of their pre-injury 

home and feel a real lack of privacy. As Emma McKinney, 

whose husband has high level tetraplegia, writes, “At times I 

wish they (support workers) would disappear so I can have a 

good argument without watching what I say”. 

Furthermore, a certain level of familiarity inevitably 

develops when a regular support worker spends so much 

time involved in such private aspects of one’s life. 

Increased familiarity can allow easier communication 

and understanding of the person and whānau’s 

circumstances and needs. 

—Dr Johnny Bourke 

Clear and respectful 

communication has been 

identified as one of the most 

important aspects. 

Johnny says: “Following an SCI, learning to ask for 

assistance can be a weird and challenging experience, 

and people can feel awkward “asking carers to do stuff”. 

Photo credit: Shane Wenzlick / Phototek.


Johnny says the research shows that the disability support workforce is often undervalued. 

It can also create higher levels of trust and reduce a 

person’s energy output through not having to manage 

and explain everything. However, overfamiliarity can 

sometimes blur the boundaries regarding expectations 

and support workers can risk becoming too personally 

involved in a person’s life. 

Of course, working as a disability support worker has a 

number of challenges too. Research suggests that the 

disability support workforce is often undervalued, prone 

to burnout, and experience disparities in pay and working 

conditions. Support workers must enter domestic homes 

which can potentially cause them to feel vulnerable and 

exposed. Also, because they work independently in the 

community there is often little collegial support and 

those who work for an agency may receive sporadic 

organisational support. 

Where to next? 

I feel there is room to better prepare people to manage 

support worker relationships – both in the training and 

education of support workers, but also in coaching people 

who will require support workers. In no particular order, I 

feel people with SCI, their whānau could be better supported 

for working with support workers through the following: 

• Learning as much about their impairments as possible. 

Enabling people and their whānau to become experts 

on their impairments will position them in a better 

situation to communicate and articulate their needs to 

others, including support workers 

• Providing time and information so that people and their 

families can practice how to communicate with support 

workers in rehabilitation so that they have a taste of 

what is to come when in the community. For example, 

this might include practice in establishing expectations 

surrounding a person’s routine, and negotiating issues 

that may arise in a person's day to day life. 

• Importantly, service providers could better educate 

people on the complex nature of support worker 

relationships, beyond the transactional, for example 

developing rapport with support workers, negotiating 

boundaries concerning familiarity, trust, and learning 

to have support workers in a personal and family space. 

• A key resource is linking people and their families with 

others who have first-hand experience. Other people 

with spinal injuries and their families are such a rich 

resource of advice regarding questions such as: should I 

look for support workers through an agency or privately 

employ them? How should I advertise for support 

workers? Is it best to have support workers with previous 

spinal cord injury experience, or, train somebody up 

according to our lives? The Community Peer Support 

Program recently implemented by the New Zealand 

Spinal Trust will be invaluable in this space. 

• Finally, reframing the overall job description of 

support workers beyond just helping with personal 

cares and domestic tasks, to working in partnership 

with people to live positive and meaningful lives. 

To further understand the factors that make a great 

support worker relationship, colleagues and I are 

planning further research to understand what works 

for everybody involved in the sector: people with SCI, 

their whānau, support workers, service providers and 

funders. By understanding what works for everybody, we 

hope to help build a more resilient and positive support 

worker sector. 

Dr Johnny Bourke is a disability and rehabilitation 

researcher at the Burwood Academy Trust, and a Research 

Fellow at the Ngāi Tahu Health Research Unit at Otago 

University. He lives with C4 tetraplegia following a surfing 

accident in 2005.


Accessible Accommodation 

Hamish Ramsden used to write for the SNN about 10 years ago. We are 

delighted to welcome him back to share his dry and humorous take on 

living with an SCI. 

—Hamish Ramsden 

Years of adjustment has 

taught me to not let the little 

hurdles turn into big hurdles 

that stop us from doing stuff. 

Hamish sustained an SCI almost 30 years ago. He has gone on to live a 

life full of impressive achievements. Credit: Hamish Ramsden. 

I don’t know how I did it, but I ended up on 

one of those accommodation finder websites 

trolling through various options about where 

to stay in Auckland. It would be easy, you 

would have thought, to log onto a site, check 

their bedrooms, access any information 

about them particularly in regard to their 

wheelchair accessibility and if there wasn’t 

enough information, then ring them to get 

the full details. 

Funny though, that on some of these particular “finder” 

websites you can’t find the specific hotel or motel’s phone 

number, it seems to be guarded by secrecy. So anyway, I 

thought I’d better ring the “finder” accommodation 

website just to confirm what the room was like. By the 

time I got through to them and asked for probably the 21st 

time whether the room is accessible, and the toilet and 

shower are open plan, which they assured me that it was, 

so I booked a room through the site. Luckily, I took a 

slightly more expensive option which would pay 

dividends later. 

Anyway, they told me that they would send a 

confirmation email, and all would be sorted. When I 

didn’t receive this email after about a month, I thought I’d 

better follow it up, but this time I rang the hotel directly 

as I’d managed to source their number (again not as easy 

as you would assume). So, what did they say? They said 

that the bathroom was not accessible, it has got a shower 

box. Really, I said, this is ridiculous and anyway, to seal 

the deal, the person on the other end of the phone said we 

can’t book you in, as we are currently an MIQ hotel, so we 

can only take people who are quarantining for two weeks 

due to the Covid crisis. 

Fantastic I thought, I have just wasted another 20 minutes 

of my life getting all this sorted and now I’m going to have 

to go through it all over again. My initial cautionary 

approach in buying the more expensive option meant I 

got my money back from my cancelled website booking (it 

doesn’t always pay to be a cheapskate) and I then started 

to waste another 20 minutes of my precious life looking 

for a new place to stay. 

We all want life to be simple right?! We don’t mind putting 

in the work but is there really that much ambiguity 

around a room’s accessibility, not only around wheelchair 

accessibility but even for the whole bloody Covid thing. 

Take time and smell the roses everyone keeps telling me. 

So, I did, and I do, but sometimes you can end up smelling 

the wrong roses, and in some cases, they may even turn 

out to be plastic and fake. Still, it’s important not to let 

these little mishaps detour me from my enthusiastic 

pursuit of getting out and about. Years of adjustment has 

taught me, and I’m hoping or assuming others as well, to 

not let the little hurdles turn into big hurdles that stop us 

from doing stuff. We reprogram ourselves to be positive, 

to look past the negatives, otherwise, and you don’t have 

to have a disability to feel this, life can get too hard, and 

you feel there is just no point. 

Right then, I finally got the room sorted, my flight is 

booked, wheelchair taxi sorted and I’m off. Let’s get this 

trip out of the way and then I’m ready to plan the next one, 

which will be a road trip and a ferry crossing. But let’s save 

that for another time, I need to go for a lie down.


The things I know now that I wished I knew then 

Hamish Ramsden is writing for the SNN to help others. 

He has been living with an SCI for almost 30 years and he 

offers some advice in winning the mental battle. 

Things to know in the first seven days: 

• That there is always a way through, you will get 

through this. 

• Sometimes there are just no answers to why stuff 

happens, no reason why. 

• You are not the first person to experience these 

feelings or be in this situation. 

• It’s okay to feel like shit, don’t beat yourself up about 

it, but look for help if it continues day after day. 

• Try not to keep looking back, concentrate on today 

and look to tomorrow. 

• Try not to compare yourself to other people in the 

Spinal Unit. 

• You are in control of your own feelings no one else is. 

• You need to acknowledge what has happened, you 

can’t deny it. 

More things I wish I knew after I had settled into 

the Spinal Unit: 

• Choose to act now; the sooner you can the better—as 

one positive comment or activity feeds on itself. 

• Don’t try and be positive all the time, perform when 

you need to, you need downtime, you need sorrow 

time, it’s okay to have bad days. 

• Talking does help, let others in, they want to help, 

start conversations. 

• Try to keep busy in some way. It stops you dwelling too 

much on all the negatives and downsides. 

• Try to do something positive each day no matter 

how small. 

• Try to make whatever decisions you can each day, do 

not pass them off to other people; for example, what 

clothes am I going to wear today? 

Back on Track new fourth edition, calling for contributions! 

The Back on Track handbook is due for a 

refresh. This will be a major revision and will 

involve the creation of new chapters and 

updating content to ensure the book has the 

most current information. 

We need your help! You can assist us with the 

following: 

• Tips and Tricks living with an SCI (men and women) 

• What would have been useful to have known at the 

beginning? 

• Ageing with an SCI – what issues are you facing? 

• Rehabilitation – how valuable was physio and 

exercise? Is exercise something you do regularly? 

• For wāhine – fertility, the challenges of being 

pregnant with an SCI and caring for children 

• Hope – the power of hope and how it helps with 

personal growth. 

We would love to hear your insights, anything from a 

single comment or anecdote up to a few paragraphs 

(500-750 words). 

Please email your comments to 

bernadette.cassidy@nzspinaltrust.org.nz by 13 May 2022.


Thank you to our 

Funders & Sponsors 

The New Zealand Spinal Trust appreciates the generous support of the following 

funders. Without their kind support, the Trust would not be able to deliver the 

variety of services to assist clients to live independent lives right now. 

Permobil is a global leader with over 50 years experience in 

providing advanced medical technology and state-of-the-art 

healthcare solutions. Today, those solutions include the sale and 

rental of power wheel chairs, manual wheelchairs, power assist 

and seating & positioning products. 

Access Community Health has been at the forefront of keeping 

people healthy and safe in their homes since 1927. Today our 

nationwide team of skilled nurses and 3,000 support workers make 

over three million visits per year, ensuring people can remain 

active and independent in their own homes and community. 

Rehabilitation 

Welfare Trust 

The Elizabeth Ball 

Charitable Trust 

Air Rescue Services Ltd 

Deluxe Box 

Riccarton Rotary 


Crusaders 

Canterbury Masonic 


Cube Design 

Rotary Club of Avonhead 

A F W and J M Jones 

Foundation 

Fresh Choice Parklands 

Rotary Club 

of Christchurch 

Hyman Marks 


Burwood 

Volunteers Trust 

Are you a subscriber? 

It’s easy to subscribe to the NZST and it only costs $30 a year. Your subscription 

helps with the printing of the Spinal Network News magazine and helps us 

support the positive futures of people with spinal cord impairment. 

Go to our website and click 

on the red ‘Donate’ button 

www.nzst.org.nz

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©2022 Hollister Incorporated. AU-00168 AUHC306c. February 2022

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