SNN July 2018

hansnzst

A.J. Poua personal trainer in a wheelchair
Attitude employee award
BNZ Crusaders visit
NZSCIR registry
Welcome backpack
Wheelie Good Tips
Bayfair Festival of Disability Sports
Bailey Unahi Outward Bound
Jazz on fitness
Lynda Scott 49 yrs in a chair

AJ POUOA

We meet one of New Zealand’s only

personal trainers in a wheelchair

We introduce Wheelie Good Tips

and the Welcome Backpack

Bailley Unahi explains her

Outward Bound experience

The National Magazine of the New Zealand Spinal Trust August 2018 Volume 21 Issue 2 ISSN 1175-4573

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CONTENTS

EDITORIAL....................................................................................... 3

HANS WOUTERS - FINDING FUTURES....................... 4

AJ POUOA ONE OF NZ’S ONLY PERSONAL

TRAINERS IN A WHEELCHAIR........................................... 6

KALEIDOSCOPE - HOW THE NZST

HELPED AJ.......................................................................................... 9

FAIRFAX MEDIA - PROMOTING INCLUSIVITY

IN THE WORKPLACE............................................................... 10

NZ SPINAL CORD INJURY REGISTRY............................. 11

CRUSADERS VISIT....................................................................... 12

THE LAUNCH OF THE WELCOME BACKPACK..... 14

WHEELIE GOOD TIPS.............................................................. 15

LIBRARY - NEW ADDITIONS TO THE NZST........... 16

BAYFIELD DISABILITY OF SPORTS FESTIVAL............. 18

KNOW YOUR RIGHTS WITH

JOHN MILLER LAW....................................................................... 19

BAIL BULLETIN AND POEM ON PAIN.......................... 21

CONNECTING PEOPLE - TIPS FOR WINTER......... 22

BAILLEY UNAHI - HER OUTWARD

BOUND EXPERIENCE............................................................... 24

JAZZ CALDER - FITNESS........................................................ 26

LYNDA SCOTT - 49 YEARS IN A WHEELCHAIR.... 28

FUNDERS AND SPONSORS................................................. 30

EDITORIAL TEAM

PETER THORNTON

Hi my name is Peter Thornton, I am so proud

to be the editor of this great magazine. I believe

it is a publication that has the power to change

lives, but it is only as strong as the community

who support it. I encourage anyone who is living

with SCI to get in touch and share their story.

We’d love to hear from you.

BERNADETTE CASSIDY

Hi, my name is Bernadette Cassidy; I am

delighted to be part of the Spinal Network

News Editorial Team.

I have been with the New Zealand Spinal Trust

as Information and Design Services Manager for

16 years - there have been lots of changes over

the years particularly the role of information.

Having access to quality and timely information

empowers people ‘to reshape their lives’.

CONTRIBUTING WRITERS

Peter Thornton

Hans Wouters

Bernadette Cassidy

Mike Brown

Noretta Boland

Debz Edmonds

Jazz Calder

Johnny Bourke

John Miller Law

Zahra Shahtahmasebi

Thanks to all who contributed

images to this issue.

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 7540 Fax: (03) 383 7500

Email: peter.thornton@nzspinaltrust.org.nz

Web: www.nzspinaltrust.org.nz

DESIGN & LAYOUT: Melanie Evans

COPY PROOFING: Thanks to Jackie Grimshaw for her

help with this issue.

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.

Patrons of the

New Zealand

Spinal Trust,

Sir Tim Wallis

(left) and Trevor

Harrison (right).

Cover Photo: A great friendship; AJ Pouoa & Noretta Boland, a Vocational

Consultant with the NZ Spinal Trust

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EDITORIAL

GET BACK TO THE REAL WORLD

Let’s get this one out of the way. Put your iPhone down and go and talk to

a real person. I don’t mean to be rude but we need to talk about this.

The addiction to smartphones – and the advent of social media – are

a defining and all-consuming phenomena of our generation. This is not

something we should be proud of. We are better connected than at any

point in the history of the world, but we aren’t really talking or listening to

one another.

I remember the first day I got an iPhone through work. I thought it was

awesome. Look at all of the things that I can do on my iPhone at any

time of the day. I was up-to-date with my favourite sports teams with

notifications as soon as they had won or lost. I could order Burger Fuel

one minute and the next buy the latest pair of Nike sneakers. Awesome.

Work owned the phone and it didn’t take long for me to realise that

they now owned me. At all times. No longer could I pack up my work

on a Friday evening after a hard week, have a couple of beers with my

work mates and not think about work again until Monday morning.

You can receive emails at any time of the day and – in the busiest and

most stressful times – the ping sound of an email coming in is enough to

ratchet up the stress levels whether it is a conscious or a sub-conscious

thing. So here it is, an iPhone designed to make my life better in every

way, but I can tell you it has made it worse in so many ways. I know I’m

not alone.

Ed Sheeran has figured it out. One of the biggest singer – songwriters

in the world doesn’t own a phone. How great is that? Now, I know that

he lives a very different life to you or me, and probably has a personal

assistant letting him know all of his commitments – but here is a guy who

is living life the old fashioned way. “I’ll meet you at the pub at 8pm?” See it

still works.

Now I understand that the online connection – the only option for some

people – is a real asset for the SCI community. No dispute about that. But

there is no substitute for face-to-face interaction.

There are plenty of stats to back up this unhealthy addiction. A survey

from consulting firm Deloitte showed that 43 percent of consumers

check their smartphones within five minutes of waking up, and 17

percent check them immediately. That is 60 percent of Americans or 196

million people who wake up every day and are ignoring those around

them to go on the worldwide web. How sad.

The Global Mobile Consumer Survey covers almost 50,000 smartphone

users aged 18 to 74 and spanned 31 countries. With nearly 264 million

Americans using their mobile phones 12 billion times per day, in the

aggregate, the mobile ecosystem remains one of the most important

enablers of the way we live and work in 2017.

How many of us have a conversation with the people who matter most

to us while we are thumbing through social media pages or the latest

news. I can feel my wife glaring at me from across the room as I write

this. “Just because you can repeat what I have said, doesn’t mean you

are listening…” she is about to say and she is right. Put the phone down.

Engage.

There are three signs that tell your partner (or anyone) that you are

listening but not really hearing. 1. You immediately go into problem-solving

mode, 2. You’re thinking of other things and 3. You’re planning your

response. Active listening is a sign of respect. It is a sign that you value

your relationship and the conversation you are having above everything

else in that moment.

These points really hit home when your kids pick this up as a learned

behaviour. My two-year-old daughter Charlie is obsessed with my iPhone.

First thing in the morning all she wants to do is be watching Peppa Pig or

The Lion King. She is a very different girl (in a bad way) if we give it to her

because her young brain is not ready and she’s already becoming addicted.

Social media, for all its great qualities of connecting friends and family all

over the world, has a dark side. Facebook and Instagram (and others)

portray a world where everything is perfect – magic sunsets, idyllic

photos and unforgettable moments. It is not real life. It can promote

feelings of real loneliness and isolation. All of us have problems and things

we are dealing with, but they aren’t played out in the social media world.

The addiction of social media is too easy to get hooked on – how many

people liked my post? Before you know it you get together with 10 of

your best mates for brunch and you are all on your phones. What is going

on? It is ruling and ruining our lives.

There is hope. Human behaviour has a history of going in cycles to

find what it has been missing. The same Global Mobile Consumer

Survey showed some encouraging signs in what they are calling “device

etiquette”.

It showed that almost half (47 percent) of U.S. consumers are making

a conscious effort to reduce or limit their smartphone usage, mostly by

keeping it out of sight or turning its functions off.

Overall, the number of times users look at their phones has remained

nearly constant for the past three years at approximately 47 times per

day, the notable exception being the youngest age group (18-24) who

check their phones 86 times a day, up from 82 times in 2016. The rapid

increase in these trends has slowed. And the number of apps consumers

download and have installed on devices, has increased only marginally, to

23, from 22 in 2016.

So what can we do?

“There is hope. Human behaviour has a history of

going in cycles to find what it has been missing.”

Bad habits are easy to form and hard to break, but creating good habits

is not impossible. Maybe it is time we applied some boundaries into how

we use our smartphones.

1. Buy an alarm clock. It will be the best $20 you ever spend. Charge

your phone well away from your bedside table so you are not

woken by notifications or the latest Facebook message (by the same

token do not use your iPhone for music while you are exercising).

2. Have a box away from your living areas that you drop your phone

into when you come home and only pick up if someone calls you.

Responding to every email or post will ruin your life. Strike up a deal

with your partner and keep each other accountable.

3. Spend a weekend without your phone. Live life the old-fashioned

way where you don’t check your emails or respond to requests of

your personal time until you are ready.

4. Connect with real people. Get away from social media and get

down to the local sports club / pub / town centre and interact with

real people. Your friends. The mates you haven’t seen in a while.

Every time you think about going on social media think, when was

the last time I actually talked to my mates – why not try to call

someone different each week just to catch up?

5. Get back to the old school way of doing things. At the risk of

sounding old, dust off some books and get into reading. Put the

kettle on and play a game of cards. Bring out the Scrabble… why

not? The stuff you do when are away on holiday is good fun and

great for winding the mind down - not winding it up by fizzing

through apps on your iPhone.

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FINDING FUTURES

THE CEO’S COLUMN

I recently met Bill Gruar. I had just finished reading his book ‘Spinal

Dogs’ which he wrote in 1996. His honest, frank approach was

captivating and I loved it. My time with him was all too short

but during our brief 45 minutes together Bill made a strong

impression on me. Others have done this before too. Gus Watson

in Queenstown, Brendan Tourelle in Auckland, Bob Symon in

Wellington, Lynda Smith in Christchurch, and there are many more.

In fact, my staff and I regularly meet people living with the effects

of SCI (spinal cord impairment) doing remarkable things.

If you are reading this magazine for the first time since your spinal

injury let me assure you, despite the intensity of your current

situation, possibly the worst of your life, you will find a new future.

A future that can be fulfilling, rewarding, honouring, independent,

productive, fun - in fact, pretty much whatever you want it to be.

I’d like to draw attention to two new initiatives that we hope will

help.

The first is a “Welcome Backpack” which will be given to every

new patient that comes through a Spinal Unit in New Zealand.

Our team have worked hard to bring together key resources and

information relevant for someone rehabilitating in a spinal unit. It

will launch in Burwood by the time this goes to print and at the

Auckland Spinal Unit before the end of the year.

WHEELIE GOOD TIPS

The second is “Wheelie Good Tips”, a weekly video series that

shares tips and tricks for living life with a spinal cord injury or

illness. A new video is released every Thursday at 10am. Just search

Wheelie Good Tips on Google and be sure to subscribe.

Our services are only possible because of the generosity of

individuals and organisations such as The SKYCITY Auckland

Community Trust (SACT) which for many years has supported

our Kaleidoscope Vocational Rehabilitation service at the Auckland

Spinal Unit.

Through their generous support they have helped many find

their new future through the sterling work of Mel, Lesley and

Noretta and their predecessors. Sadly SACT recently refined

their funding criteria and our work now falls outside of it. Our

latest request for $40,000 was unsuccessful which leaves us with

a considerable shortfall. Funding our work remains one of our big

challenges especially as granting bodies and foundations encounter

an increasing number of requests to a shrinking pot. You will no

doubt have noticed we are presenting our needs more clearly and

reaching out to you our supporters. We are working hard here to

broaden our revenue generation to deliver everything we need

with a view to decreasing our dependence on funding bodies. One

initiative that has proven popular and a lot of fun is our Fundraiser

Fun site. Heck! Russ Simpson just ran a marathon at Mt Everest of

all places to raise funds for us - well done Russ - thank you!

“It always seems impossible

until it’s done.”

On the 5th of September we will once again build awareness on

World Spinal Cord Injury day. This year we have the Minister for

Disability and ACC confirmed to use a wheelchair in parliament to

promote our cause on national TV.

This will also be the day we launch the “Relieve The Pressure”

national appeal and both can be found on www.relievethepressure.

org.nz . As if that wasn’t enough excitement, we are also building

towards the Tour Of New Zealand cycle tour of which we are

now a key charity. www.tourofnewzealand.co.nz If you’d like to

help us “Relieve the Pressure” or be involved in the Tour of New

Zealand please reach out.

Well, I am already looking forward to seeing Bill Gruar again - he

used to tour with one of New Zealand’s most famous musicians - I

bet he has some great yarns. I hope you enjoy and are uplifted by

the stories in this edition of SNN. Please don’t hesitate to contact

me or my team if you have any requests or ideas, or need a bit of

help.

Nelson Mandela is credited with saying “It always seems impossible

until it’s done” true words from a wise man who overcame his own

tremendous adversity and I hope you can too.

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5


Q&A

AJ POUOA

One of New Zealand’s Only

Personal Trainers in a Wheelchair

Two years ago, Aiga ‘AJ’ Pouoa was a gifted rugby league player

with big dreams. While attending a rugby fundraiser in Auckland,

she headed back to her friends’ apartment to wind down. She

went out on to the balcony of the third storey apartment for

some fresh air and inexplicably fell over the waist-high balustrade.

Her injuries from the fall included a dislocated spine, a punctured

lung, broken ribs and a cracked skull. She was lucky to be alive.

She survived the seven metre fall which ended her sporting

dreams, but, now, she is determined to help others as one of the

country’s only personal trainers in a wheelchair. We caught up

with the 37-year-old, who is originally from Lidcombe in New

South Wales, Australia, on her remarkable recovery and how

her experience is helping her to improve the lives of others living

with SCI.

Can you take me back to 2016, what are some of your

memories of falling off the balcony and also your rehabilitation?

The last thing I remember was walking out onto the balcony to

get some air. I remember it was raining that night. Next thing I

know I woke up in hospital with my cousin by my side. It hadn’t

quite dawned on me what had happened, it was so surreal like

a really bad dream. I had quite a rocky road during my time at

the Spinal Unit. I was in and out of Middlemore hospital quite

a bit due to complications with my surgery and reactions to

medication. Getting into a routine as far as my rehabilitation goes

was difficult. It was like taking a step forward and taking two

steps back.

Rehabilitation at the Spinal Unit was tough as I was still getting to

know what my body could and could not do. At the same time

as I was still coming to terms with my situation and to see what

my body was not capable of literally broke my heart as I came to

the realisation that this is me, and this is going to be my life. The

physios at the Spinal Unit taught me all the necessary skills to get

through everyday living. Then after I was discharged I continued

my rehab at Rehab Plus.

You were told that you would never walk again, how hard was

that time mentally and how did you get through it?

After I was told I would never walk again, I broke down. I had no

idea of my condition or the damage that had been done to my

spine. The whole time I was in hospital I had it in my head, I’ll be

right. I’ll train hard and get walking again in no time. So, to be told

that I’d never walk again and hear what the surgeons had to do

to put me back together threw me. I didn’t realise how bad my

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AJ Pouoa is making a big difference to the Auckland SCI community by sharing her own story and her work as a personal trainer.

injury was. Looking at me you would think I was handling everything

well, mentally and emotionally I was a total wreck. All I wanted to do

was sleep and hope it was all a bad dream.

I continued to follow the rehab timetable and go to workshops to

listen to other SCI people’s stories and hear how they dealt with life

in a wheelchair. It was good to hear that there is life after SCI and

that was reassuring. At the same time, I was fighting an internal battle

within myself. I was referred to a psychologist and that helped put

things in perspective.

It must have been tough being such a sporty person and letting go

of those dreams?

Before my accident I lived quite an active lifestyle. I played Rugby

Union for Glenfield in 2016 winning the women’s development

division competition, I captained the Pt Chevalier Buccaneers

Women’s Rugby League team for two years and played national level

Rugby league for Akarana 2015 and selected again for 2016. I also

dabbled in some boxing, winning my fight in April 2016. I trained five

days a week, twice a day. Three times some days as I’d go to footy

training after the gym. I worked a full-time job and played sports on

Saturday and Sunday during the winter and trained six days a week

at the gym in the off season.

I had a lot of goals and trained hard to achieve them, so to have all

those goals wiped out in one night was also difficult to deal with. I

felt like I had lost my purpose in life…well what I thought was my

purpose in life at the time.

You went on to study to be a personal trainer with Fit College NZ,

what was the feeling like when you were accepted and what was

the study like?

I was ecstatic! I did not think they would say yes. Then to be offered

a scholarship was a bonus. I spent the next four months being

carried up and down stairs twice a week by my class mates and

tutors because the floor the class room was on was the one floor

the elevator didn’t stop. Funny when I think about it now but to be

honest at the time I felt a little embarrassed, but it was something I

had to deal with to get to where I needed to be. The bigger picture

was clear in my mind and that helped me be confident enough to

not be so shy or worry about whether they minded or not.

You must be proud to be one of - if not the only - personal trainer

(PT) in a wheelchair in NZ?

I kind of am, I don’t really think about it to be honest. I’m happy

knowing that I was able to show other people with SCI that it is

possible. I’m proud of the fact that I was able to inspire one of the

boys with Cerebral Palsy that I train at the Spinal Unit to enrol in a

Personal Trainer course and he is doing really well.

“A PT in a wheelchair is not something you

see every day, or hear of very often.”

To me, it’s what you achieve after you’re qualified that that counts.

A PT in a wheelchair is not something you see everyday or hear of

very often, and I knew it was going to be hard to get clients who are

willing to see past the chair and trust in my skills, but I knew I had

to trust in my abilities first. I knew what I was capable of and if I just

put my head down and work hard at my craft, word will get out and

people will come, and they did.

Does your own experience help with your work, because you have

been there yourself and you know how hard it is?

Absolutely, going from client to trainer I think is important to have

that experience. To know what it’s like to be in the clients’ shoes

really does help. When I think back to when I would train and to see

how my trainers interacted with me helped me understand body

language, signs of fatigue or stress and how hard to push the client.

How to keep them on track with their fitness goals and to believe

that anything is possible if you work hard for it. Some people have

the misconception that PTs yell and scream at you to get you moving,

that certainly isn’t the case. A calm, confident and positive nature

worked for me and still does as I train my clients.

What do you enjoy most about your role? It must be hugely

satisfying to see people achieve their goals?

What I enjoy most about my role is to see the change in people.

From “OMG I’m going to diiiiiiie!” to pushing themselves to fit in that

very last rep. Working with the Strength and Conditioning classes

showed me that people’s attitudes change when they start noticing

the difference in their fitness level and/or their body. Seeing them

realise “yes, it is possible to achieve my goals!” I get that because I’ve

been there before. It’s awesome when your client comes back to you

and tells you that because of our trainings, they were able to play a

whole tournament and were not tired or sore and that they could’ve

played another few games. Coming from a sporting background, I

get that. I remember the feeling of the first time I played an 80min

game of Rugby League with half time being my only break. From

then, I knew that if I wanted to keep up that level of strength and

fitness I had to train harder and more often.

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AJ Pouoa loves to push her clients out of their comfort zone so they can achieve things beyond their expectations.

8

I enjoy helping people to do things that are out of their comfort

zone or things they were not confident in doing before, just to show

them that it is possible to exercise no matter what your situation is.

Seeing that change in my clients is hugely rewarding, and to see them

excel even further than they expected, even better.

What was it like to start your own company, were you nervous?

Were there any particular barriers that you had to overcome to

achieve this?

The only barrier was questioning myself and my abilities. Do I have

what it takes? Who’s going to hire me? Is my wheelchair going to

be an issue? It was a case of, should I… or shouldn’t I? Self-doubt

started to set in. I thought to myself; “Are we ever ready to do

things that are out of our comfort zone?” Then I thought back to

my mindset when I was playing sport. I was never ready to captain

a footy team, but I did for two years and gained huge respect from

my team. I felt I wasn’t ready to jump in the ring to fight, but I did and

won.

This time the question was am I ready to start my own business?

No? Well I’m going to do it anyway. We can’t spend our lives

doubting ourselves and our abilities. I have no idea where this

business venture is going to go but I’m going to work my butt off to

make sure people know that I am here to help them.

What advice do you offer to people with an SCI who are at the

start of their rehab?

Do not be discouraged or doubt yourself. Get to know your new

body and try your best every time you have physio. You have a long

road of recovery ahead and it’s going to be tough but persevere.

Fight, fight to be strong, fight to be able and fight for your future.

Even when you feel the chips are stacked against you, go all in every

time. You may fail at times… but what if you succeed? Be persistent,

consistent and stay positive. There is truth to the saying “Every cloud

has a silver lining”.

What advice do you offer to people who are looking to get into

work and are nervous and unsure about what they can achieve

because they are a wheelchair user?

Don’t let self-doubt stop you from going for what you want in

life. You may be nervous and unsure about getting back into the

workforce and I know how it feels to be insecure about being in

a wheelchair. I went through the same thing when I was deciding

whether I could be a Personal Trainer. Can I do it? Will I be able to

do everything that is required of me? I don’t want to let anybody

down. All these questions went through my head and in the end, I

decided to just go for it. If it works, sweet. If it doesn’t, change the

plan and try again. The only thing that will stop you from succeeding

is you. You are the master of your destiny and once you realise

that, everything that you doubted about yourself will fade. Your

insecurities about being in a wheelchair, your doubts about being

able to do the job will all disappear. You just got to go for it, you have

nothing to lose and everything to gain.

“The support systems that are in place to help

you in this process are amazing. Don’t forget to

access them, that’s what they are there for.”

What is next for you?

The support systems that are in place to help you in this process

are amazing. Don’t forget to access them, that’s what they are there

for. I don’t think I would have been as organised or as confident if it

wasn’t for their support. My next goal is to start New Zealand’s first

Wheelchair Rugby League team. I love this game, so it’s a way for me

to continue playing the sport that I love and give wheelchair athletes

of any injury level another sport to participate in and give athletes

aspirations to play on the world stage. I am also looking at studying

to become a qualified CrossFit trainer.

What are three simple exercises that wheelchair users can do at

home to improve their fitness?

1. Go for a wheel: Get outside and tackle those footpaths, hills

and all. A good 10-15min wheel will get the blood pumping and

work those arms out.

2. Shoulder press: Grab a couple of cans of baked beans and use

them as weights. With a can in each hand, hold them on your

shoulders. Lifting one can at a time, raise your can above your

head extending your arm as straight as you can, alternating

arms. Three sets of 10-15 reps.

3. Lateral raises: Using your baked beans cans again, hold can

in each hand and start by dropping your arms by your sides.

Then raise both arms up to shoulder height, keeping your arms

as straight as you can. Pull your shoulders back and pull your

shoulder blades together, it helps keep you balanced. Three sets

of 10-15 reps.


KALEIDOSCOPE

By Noretta Boland, Kaleidoscope Vocational Consultant with the NZ Spinal Trust.

Kaleidoscope initially met with AJ upon

her arrival at the Auckland Spinal

Rehabilitation Unit following her transfer

from Middlemore Hospital in 2016 and

we continued to have weekly meetings

throughout her inpatient stay.

AJ had been heavily involved in a variety

of sports - and had always been very

committed to completing her own personal

training sessions two times a day, five or

six days a week, and she would then play a

number of games at the weekends.

AJ had made enquiries about enrolling on a

Personal Trainer (PT) course facilitated by

Fit College NZ a couple of months prior to

her accident and that she was due to have

commenced a course several weeks after

her accident. Becoming a PT had always

been AJ’s career goal so the plan was to

support AJ to continue to make that goal

a reality!

Following her discharge from the Auckland

Spinal Rehabilitation Unit, Kaleidoscope

kept in regular contact and would meet

with her at her home to provide support

around the actions that were required to

enrol for a Personal Trainer Course with Fit

College NZ and to assist with co-ordinating

the practical work experience component

of that course (with an Adaptive Trainer).

With AJ’s focus and determination to

achieve her goal there was never going to

be any other outcome than success!!! AJ,

to the best of my knowledge, is the first

person with a SCI to become a qualified

PT… so she is a trial-blazer for others who

may wish to pursue their dream. After

gaining her qualification and becoming

a Registered Personal Trainer, AJ then

turned her focus on securing employment,

and following a conversation between

Kaleidoscope and Parafed Auckland, AJ

began working as an Adaptive Trainer

- providing fitness and strengthening

programmes that she modifies to meet the

individual’s abilities.

AJ has also started working with groups

of young people in a gym setting and is

looking forward to gaining further skills so

that she can manage a gym in the future.

Kaleidoscope has had the privilege of

working with AJ following her SCI, and she

has proven to be an inspiration to all those

people that she has met since that time.

KALEIDOSCOPE

Kaleidoscope, a programme of the

New Zealand Spinal Trust is a notfor-profit

organisation,. It’s guiding

principles are:

• Everyone can have a great job

• It’s healthy to be working

• The sooner the better

• There are thousands of work

opportunities

• Personal networks are the key

• The process for getting a job is

the same as before your injury

• You can do it yourself –

Whatever it takes!

• Your life experiences give you

unique qualifications

For more on the Kaleidoscope

programme visit;

nzspinaltrust.org.nz

QUALITY RENTAL

VEHICLES FOR

PEOPLE LIVING

WITH DISABILITIES

• FREEDOM

• INDEPENDENCE

• MODIFIED CARS

• HAND CONTROLS

• FAMILY OUTINGS

• APPOINTMENTS

0800 864 2529

www.freedommobility.co.nz

9


Attitude ACC Employer Award

Fairfax Media

Annamarie helped launch Creative Spirit in Fairfax’s New Zealand

offices in 2012. The initiative assists companies to employ people

with intellectual disabilities across New Zealand and aims to

inspire others to provide more workplace opportunities for willing

employees.

The idea for Creative Spirit started when she was having a

conversation with a colleague who had a child with Down

syndrome. He told Annamarie about the huge unemployment

hurdle people with a disability had to leap to get a job. She asked

him what she was doing now and he said she was at home sitting at

home on the couch.

“It makes me quite sad when you go into large organisations and

they have all this work to do and you have these people who want

to be part of the community and the workforce – everyone wants

to have a conversation around the watercooler – so I thought we

had to make a difference.”

Annamarie got in touch with Attitude and started to understand

about service providers and what was required to better cater for

disabled people in the workplace. There are currently eight people

with intellectual disabilities employed across Stuff ’s Auckland,

Hamilton, Wellington and Christchurch offices and many more

have been employed in other companies they connect with.

She said the aim of Creative Spirit is to showcase the benefits of

employing young people with intellectual disabilities into the

workforce and to encourage other employers to do the same. “We

want to shift the dial on that woeful unemployment statistic.”

Annamarie offered some advice for employers who are looking to

be more inclusive in their employment and recruitment.

“You know what you do, it is really simple, you employ people with

access needs and you ask them how we can make our workplace

easier for you,” she said. “We look at our workplace from a

physical point of view and if someone has a disability we ask them

how we can make it work for them. It is as simple as that.”

10

Annamarie Jamieson is a firm believer that “inclusivity in the

workplace should be like breathing… you don’t need to think

about it, it should just happen”.

The People and Culture Director at Stuff said it was a “huge deal”

for the organisation to be recognised with an Attitude Award for its

inclusiveness towards people with disabilities.

The annual Attitude Awards celebrate the achievements of

people who live with disabilities and Fairfax (now Stuff) won the

Attitude ACC Employer Award, “It was fantastic for our people

to be recognised for the work we do helping all our communities

connect and thrive but more so it’s an opportunity for us to share

the message so other companies can follow suit,” said Annamarie.

“We are incredibly proud of this achievement.”

The company, which owns Stuff.co.nz, Neighbourly and a wide

range of newspapers across the country, runs a New Zealand

sign language cafe COOP and also employs several people with

intellectual disabilities as part of a programme called Creative

Spirit.

The sign language cafe was started two years ago and the objective

was to introduce staff to New Zealand sign language via a great

cup of coffee and to give someone who might be passionate

about being a barista, a place where they can learn and grow. The

Auckland office’s sign language cafe employs three deaf baristas

and Annamarie said ordering their coffees had been an effective

way to teach the 350-odd staff at the office some sign language.

The additional benefit of this is we can understand about access

needs and how our products can be made more accessible. “These

are the conversations we have. I don’t believe you will ever make a

business accessible until you employ people with disabilities so you

can see how it works for them and understand their point of view.”

Annamarie said that all employers in New Zealand

must see diversity and inclusion as a must-do not a

box-ticking exercise.

Annamarie said they have a great inclusive culture at Stuff and

everyone wants to support each other to be the very best they can

be. There has been a huge groundswell of support. Annamarie said

all employers in New Zealand must see diversity and inclusion as

a must-do not a box-ticking exercise. “You can’t manage what you

can’t measure. If you look around your organisation – ask yourself;

“Am I really a diverse and inclusive workplace?” And you will

know if you are or not by the diverse people in your organisation.

If you aren’t then it is time you went about fixing it. It is really

easy and the paybacks are immense. I encourage anyone to have

a conversation with me about Creative Spirit or the Coffee Co-op,

they are great programmes, they work, they are easy and they

make a big difference.”


IMPROVING OUR

UNDERSTANDING OF SPINAL

CORD INJURIES

Every year in New Zealand approximately 150 people are diagnosed with spinal cord impairment (SCI) through injury,

medical or congenital causes.

While life expectancy has improved for people with SCIs, the impairment brings with it progressive complexity for people’s

lifelong self-management of it.

To gain a deeper understanding of SCIs the New Zealand Spinal Cord Injury Registry (NZSCIR) was launched in August

2016. Every admission since then to New Zealand’s two spinal units – the Burwood Spinal Unit, part of Canterbury District

Health Board (DHB), and the Auckland Spinal Rehabilitation Unit, part of Counties Manukau District Health Board – has

been added to the database if the patient consents.

The registry collates a person's demographic information (age, date of injury, gender, location, ethnicity, etc.) and clinical

data (level and type of injury, admission and discharge dates, complications etc.) for their acute (straight after injury/incident)

and rehabilitation phases. Participants are followed into the community, with questionnaires completed at one, two and five

years and then every five years after their initial SCI.

NZSCIR Burwood Clinical Director Raj Singhal said: “NZSCIR is probably one of the most important milestones in

management of SCI patients in New Zealand. It is a dream come true for some of the senior colleagues. The scope of

the registry is immense. It gives us the true incidence of SCI in New Zealand to compare our results with international

community and it can be used for research and funding bodies alike.”

Having data on the course of the impairment throughout someone’s life, the prevalence of SCIs and how they occurred

can help researchers who meet the data access criteria, and clinicians, understand trends and where preventative measures

should be concentrated. For instance, if SCIs were occurring at a high rate from older people falling out of hospital beds,

introducing guard rails could help stop this.

According to Dr Richard Smaill, who was a strong advocate in the register’s development, “following people as they age with

the SCI is just crucial for research, clinical treatment and improving the overall wellbeing of people with SCI”.

New Zealand is using the Canadian-based Rick Hansen Spinal Cord Injury Registry (RHSCIR), which began in 2004, and has

over 6,000 patients registered.

New Zealand is the first international site to collect information on the RHSCIR, with other international sites in China and

Israel also enrolled.

Richard said they are keen to add people with SCIs before last August to build up the database if funding allows. Raj said

the coordinator role for the registry is the key to its success and will also need adequate funding in the future.

The DHB continues to collaborate with the Rick Hansen Institute and is extremely grateful for their generous support in

establishing and maintaining the NZSCIR. More information and statistics from the NZSCIR will be placed on the NZ Spinal

Trust website www.nzspinaltrust.org.nz in the coming months.

If you have any queries about the registry please contact Burwood NZSCIR Coordinator Tracey

Croot on 03 383 7559 or at NZSCIR@cdhb.health.nz.

11


Left to right Crusaders; Mike Alaatatoa and Owen Franks with

Forwards Coach Ryan Jason Ryan, and Hans Wouters, CEO of the

New Zealand Spinal Trust

CRUSADERS VISIT THE BURWOOD SPINAL UNIT

By Zahra Shahtahmasebi

12

The rugby culture in New Zealand is undeniable. The Rugby

Union is our version of Hollywood; the players are our A-list

celebrities. You can’t help but feel a little star-struck at the chance

to meet them in person.

The Crusaders rugby team puts this perspective to good use in the

charity work it does. Team members are frequent visitors to the

Burwood Spinal Unit, whenever they have time between training

and matches.

In early March, two Crusaders; Owen Franks and Mike Alaalatoa

alongside Forwards Coach, Jason Ryan, paid an hour-long visit to

the Spinal Unit. Patients from both the Spinal Unit and the Brain

Injury Unit were invited to attend and meet the players.

The impact of this visit was massive; good vibes filled the unit,

with patients, staff, and players all pleased to have the opportunity

to interact with each other. Down in the Spinal Unit, two weeks

later, posters still covered the walls, and the positive atmosphere

continued to linger.

New Zealand Spinal Trust Chief Executive Officer, Hans Wouters,

thought the event was fantastic and was happy with how it went.

It was clear to see how the patients, in particular, were uplifted by

the rugby players who came.

Hans said there’s a certain feeling of ‘Groundhog Day’ within the

unit when nothing out of the ordinary really happens. So having

events like this helps to break up the everyday monotony and bring

a little excitement.

Hans believed it wouldn’t matter if the players were from a

different sport – anyone nationally famous - even politicians -

would have the same impact and bring warmth and sunshine to the

patients’ lives.

The Crusaders visit whenever they can – at least once or twice a

year. The All Blacks have even visited at times, when they’ve been

hosted by the Canterbury Rugby Football Union (CRFU). Aside

from personal visits, the CRFU also provides the BSU with 12 free

tickets for each home game in the ITM cup and the Super Rugby

Season.

These tickets are distributed by peer support worker Brett

Ladbrook, who attends the match along with the patients. For

some, it will be their first time out in a wheelchair and it can begin

as an intimidating and overwhelming experience. But Wouters,

who also attends the matches, spoke of the immense positive

impact this has by providing a safe environment to facilitate a great

experience.

The BNZ Crusaders, the CRFU and the Canterbury District

Health Board Burwood Spinal Unit (BSU) have a long-standing

relationship, which was established and avidly maintained by

Graham Tapper, a former CDHB employee. The importance of

this relationship is huge, with rugby being a significant contributor

to spinal cord injuries in its early days. Now fewer rugby players

are coming through the Spinal Units – in fact, cycling has become

the biggest contributor to spinal cord injuries.

Unfortunately, Graham Tapper passed away in 2013, and it seemed

then that the opportunity for this partnership was lost.

However, Hans arrived on the scene, as Project Manager of

the New Zealand Spinal Trust. He had collaborated with the

Crusaders in his previous work and learned the Burwood Spinal

Unit also had a history with them. After being given the goahead

by Liz Oliver, Wouters took the opportunity to revive the

relationship where Tapper left off.

Now the New Zealand Spinal Trust acts as the conduit between

the BNZ Crusaders, the CRFU and the BSU, and helps by adding

value and resources to the event.

Regarding the event in March, it was Jase Ryan’s idea to take the

players to the Spinal Unit – it was important for him that the

players saw and understood such situations.

Wouters said this relationship, while being light-hearted, also brings

some reality. For the patients, it creates a beautiful distraction - for

those few moments while the players are in the Unit, the patients

won’t be thinking about their injuries or their pain.

And for Wouters, he maintains “any moments I can create like this,

I will.”


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Talk to us if you are considering playing

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THE WELCOME

BACKPACK

Many of you reading this will remember how traumatic it was to

be in the Spinal Unit for the first time - an unfamiliar place, a life

flipped upside down, uncertain, and unfamiliar. To help new patients

and their families during their stay we have created the Welcome

Backpack.

The backpack will first be given to every new patient at Burwood

Spinal Unit and will contain an introduction to the services and

support we offer, information on amenities nearby, a coffee and

muffin voucher from Switch Café, a suggested outing to the Pier and

library in New Brighton, a drink bottle, pen and notebook, maps and

bus time table, links to key online resources and a copy of our Back

on Track guide to life with a spinal cord injury (if deemed suitable).

We anticipate customising and replicating this offer to the Auckland

Spinal Rehabilitation Unit in the not too distant future with resources

and items specific for the area.

A special thanks to the Harcourts Foundation for covering the cost

of the first run of backpacks, Switch Expresso and Switch New

Brighton for supplying the coffee vouchers, and our team for helping

bring this to life.

If you’d like to suggest, or sponsor, an item to add to the pack then

please reach out via email to mike.brown@nzspinaltrust.org.nz

14

www.wheelchairs.co.nz


We sometimes take the knowledge we have for granted.

Recognising this, we’ve launched a brand new weekly video series

to share tips, tricks and life hacks for living a confident, productive,

and independent life with an SCI. Featuring staff and members of

our community they are released every Thursday at 10am on our

Facebook page and YouTube channel.

In the first episode New Zealand Spinal Trust Peer and Family

Support Coordinator Jazz Calder, a paraplegic who now uses a

power wheelchair to preserve her shoulders, explains how she

modified and uses her side entry van. She shows the accessible

wheelchair hoist, hand controls, camper-van setup with accessible

toilet, and portable ramps, and the freedom it brings her.

What was it like making the episode Jazz?

“I was pretty nervous, but Mike reminded me to imagine I was

talking to someone lying in the hospital or to a friend who wanted

to know about my setup. That advice reminded me exactly why

we’re doing this video series, and helped me feel less self-conscious.

It feels great to pass on my knowledge and I hope it helps.”

For episode four we visited incomplete tetraplegic Craig Muir

where he proudly shared the automations in his home. These

include smart phone controlled windows, doors, curtains and lights

which have reduced the need for in-home help and increased his

independence.

In another episode Josh Caldwell shows his stationary hand-bike

and shows us how to use a standing frame to bring pressure relief.

In episode two, paraplegic Brett Ladbrook from Connecting People

explained why he chose his vehicle, how he transfers in from his

wheelchair, what sort of hand controls he uses, and gives us a

driving demonstration.

Brett said: “I’ve really enjoyed the process of sharing my

experiences. Since I had my spinal cord injury in 1985 I’ve learnt a

few tips that make my life easier. I’m happy to pass these on, and

it’s great to see the videos are stimulating discussions. Together we

can innovate, encourage and support each other. This is what peer

support is all about.”

Some of the episodes in the pipeline include a custom built

accessible home, how to drive if you’re a C5 tetraplegic, ride a

motorbike as a paraplegic, a wheelchair attachment comparison,

travel tips and many more. Get the latest by subscribing to our

YouTube channel which is linked from our website.

If you’d like to share your tips on video, or have some suggested

content, please get in touch by emailing

mike.brown@nzspinaltrust.org.nz

15


NEW ADDITIONS

CHECK OUT THESE GREAT BOOKS!

These items, and much more, are available to borrow for free! Not a member? It’s free to join; just phone the library on:

03 383 9484 (Ext. 99484) or email us at: abclibrary@nzspinaltrust.org.nz

WHY WE SLEEP: THE NEW SCIENCE OF SLEEP AND DREAMS BY MATTHEW WALKER,

2017.

The first sleep book by a leading scientific expert - Professor Matthew Walker, Director of UC Berkeley’s

Sleep and Neuroimaging Lab - reveals his groundbreaking exploration of sleep, explaining how we can

harness its transformative power to change our lives for the better.

Walker explains how we can employ sleep to improve learning, mood, and energy levels; regulate

hormones; prevent cancer, Alzheimer’s, and diabetes; slow the effects of aging; increase longevity; and

enhance the education and lifespan of our children.

INSIDE-OUT: THE PRACTICE OF RESILIENCE BY DR. SVEN HANSEN, 2015.

Inside-Out was written to counter fear. By enquiring deeply into who you are and how you function, you can

discover much better ways to live. This is the practice of resilience – learning to be calm, energized, engaged,

focused and in flow. We can all learn to be more resilient.

Each of the practices described in the book are soundly based on evidence and deliver results. Some steps such

as sorting out sleep, nutrition and exercise are easier to understand and harder to perfect. Dr Sven Hansen is the

founder of The Resilience Institute. He is a medical practitioner with a background in Special Forces and sports

medicine.

MINDSET: CHANGING THE WAY YOU THINK TO FULFIL YOUR POTENTIAL BY CAROL S.

DWECK, 2017.

In this book Carol Dweck explains why it’s not just our abilities and talent that bring us success - but whether we

approach them with a fixed or growth mindset. With the right mindset, we can motivate our children and help

them to raise their grades, as well as reach our own goals-personal and professional.

Dweck reveals what all great parents, teachers, CEOs, and athletes already know: how a simple idea about the brain

can create a love of learning and a resilience that is the basis of great accomplishment in every area.

THE STRENGTH SWITCH: HOW THE NEW SCIENCE OF STRENGTH-BASED PARENTING HELPS YOUR

CHILD AND YOUR TEEN TO FLOURISH BY DR. LEA WATERS, 2017.

By showing us how to throw the “strength switch,” Dr. Lea Waters demonstrates how we can not only help our

children build resilience, optimism, and achievement but we can also help inoculate them against today’s pandemic

of depression and anxiety.

With many suggestions for specific ways to interact with children, Waters demonstrates how to discover the

strengths and talents that they have, how to use positive emotions as a resource, how to build strong brains, and

even how to deal with problem behaviours and talk about difficult situations and emotions.

THE BAREFOOT INVESTOR: THE ONLY MONEY GUIDE YOU’LL EVER NEED BY SCOTT PAPE,

2017.

Scott Pape will show you how to create an entire financial plan that is so simple you can sketch it on the back of a

serviette … and you’ll be able to manage your money in 10 minutes a week.

This book is full of stories from everyday Aussies — single people, young families, empty nesters, retirees — who

have applied the simple steps in this book and achieved amazing, life-changing results.

16


JOURNALS / MAGAZINES

Forward: life after spinal cord injury No. 143 February 2018

No. 144 April 2018

New Mobility: life beyond wheels Vol. 29 no. 292 January 2018

Vol. 29 no. 294 March 2018

Vol. 29 no. 295 April 2018

Nadia: NZ lifestyle magazine February / March 2018

April / May 2018

Spinal Network News Vol. 21 no. 1 March 2018

Sports n’ Spokes Vol. 44 no. 1 January 2018

Vol. 44 no. 3 March 2018

All the above items are available from the Allan Bean Centre Temporary Library, Room 7, Portacom A, Burwood

Hospital.

Opening Hours: Monday to Friday, 1:00pm - 4:30pm

Membership is free. Contact Bernadette Cassidy for information, bernadette.cassidy@nzspinaltrust.org.nz

99484 / 03 383 9484

CDHB BOOK FUND

Burwood Hospital provides funding every year for the purchase of books and resources

for staff that will benefit patients. For 2018, a good response was received and all items

requested were reviewed by the Burwood Library Committee. However it’s not all

about books, as this year we received a request from the Speech and Language Therapy

department for a Language and Resource Activity Kit (LARK-2). The materials in the kit can

help stroke patients achieve a functional level of communication

Jo Tipping and Michelle Croft, Adult Community Therapy Service & Community Stroke

Rehab Service holding the new LARK (language and Resource Activity Kit).

WORDS TO WARDS PROJECT

Christchurch City Libraries (CCL) and the Allan Bean Centre (ABC) Library are pleased to

announce the ‘Words to Wards’ programme which commenced in May.

CCL have a wide range of electronic resources; e-books, magazines, newspapers and audio

books - the project teams from CCL and the ABC Library were keen to support the use of

library eResources for hospital patients.

A team of trained library volunteers will provide onsite assistance to patients who are

interested in downloading books, magazines, newspapers or audiobooks in two Burwood

Hospital Wards: Ward D1 (Orthopaedic Rehab) and Ward GG (Surgical Orthopaedic).

For more information, contact Bernadette Cassidy, P: 99484

E: bernadette.cassidy@nzspinaltrust.org.nz

17


BAYFIELD DISABILITY OF SPORTS FESTIVAL

There were four

different sports -

Wheelhair Rugby,

Wheelchair basketball,

Boccia and Blind sport -

in the inaugural Bayfield

Disability of Sports

Festival.

18

For event organiser Amanda Lowry there are many reasons why the

inaugural Bayfield Disability of Sports Festival was a special occasion.

It was the first time that four different sports – Wheelchair Rugby,

Wheelchair basketball, Boccia (a precision ball sport, similar to bocce,

and related to bowls and pétanque) and Blind sport –were brought

together in one venue to compete. A total of 98 athletes competed in

the festival that was staged in Tauranga in March.

“We had a vision but didn’t grasp the complexity of it until we started,”

said Amanda. “So 12 months of planning and hard work went into

getting it off the ground.”

They partnered with the Paralympics Trust who held an open day on

Sunday 25 March. The Open Day was an opportunity to find Para

sport opportunities in the athlete’s area, watch demonstrations, and

also get amongst the action.

“This brought a different demographic of spectators to our respective

events and across the weekend more than 600 people attended.”

Amanda said the Bayfield Disability of Sports Festival is all about

sustainability. They want to grow and deliver a high-quality sports event

each year. They have already started discussions with Powerchair

Football and table tennis to add to the line-up in 2019.

Amanda knows they have a good base to build from after what they

achieved in 2018. She said the feedback from the competitors from

the first event was all positive.

“Sport helps improve people’s quality of life,”

said wheelchair rugby participant Neil.

“The festival was one of the most well-run and enjoyable events I

have been involved in,” said Robbie who took part in the wheelchair

rugby. “The publicity and inclusiveness is amazing and a great way to

showcase the skill and ability disability sport takes.”

Another wheelchair rugby participant Neil said: “Sport helps improve

people’s quality of life. The icing on the cake was the awards / dinner

evening that allows everyone to mix and mingle and share experiences

and opportunities.”

“The festival is definitely a huge step in the right direction for disability

sport and getting more exposure in the public eye,” added Stacey who

competed in Boccia.

"As Boccia players we are used to playing our sport in an empty hall,”

said Matt. “Being one of the sports in the festival allowed us to be part

of something bigger, something dynamic.”

“What an honour for the BOP Blind Sports Club to be included in the

Parafed Disability Sports Fest, joining forces to promote disability sport

in our community,” said Steph, who competed in blind sport. “We’ve

had great feedback and look forward to working with everyone

again next year where we hope to add further Blind Sports to the

weekend.”

“It was great to see so many disabled athletes across multiple sports

codes competing at the same event,” said John from wheelchair

basketball. “There was such a great vibe throughout the weekend, and

everyone I spoke with is excited about next year.”

Amanda said her team was humbled by the feedback from the

athletes.

“We expect a much bigger and better turnout next year now that

everybody has heard about the event. Next year we want people to

be really excited about the event and put it in their calendars.”

Amanda said her team wants to focus on adding value to the sports

codes that attended. They want to connect with athletes, and create

the platform that allows them to communicate with us and each other.

They want to build a New Zealand-wide sports community.

“We want to build public awareness of what disability sports are

available in each region, and who to contact if they’re interested

in a sport. We envisage growing sustainability each year, eventually

attracting players from around the Pacific.”


KNOW YOUR RIGHTS

with John Miller Law

INDIVIDUAL REHABILITATION PLANS (IRP’S)

IRP’s are prepared if you need support from ACC for more

than 13 weeks. The purpose is to ascertain the treatment and

rehabilitation required. An ACC Case Manager will create this

plan in consultation with you, and you have a right to negotiate

the contents. You may also wish to include involvement from

support people in the negotiation phase.

The plan must include:

• the plan and a target date (e.g. going back to your old job

in three months)

• necessary assessments (occupational and medical)

• any treatment / rehabilitation in place / to be approved,

and whether ACC will fund it

• appropriate services, and

• the next progress monitoring meeting with the Case

Manager.

If you are unhappy with the contents of the plan, you may apply

to review it.

• Of a type normally provided by a rehabilitation provider.

Social rehabilitation extends to all circumstances of the injury

and the claimant’s life, not just work or travel to work. ACC

must look at the physical and mental benefits of the equipment

in any aspect of a claimant’s life, including their personal life.

2. What rehab, mobility, technology and transport equipment

am I entitled to?

Refer general criteria above.

ACC does have a degree of discretion to approve or decline

equipment, but the decision needs to be reasonable / fair and

backed up by evidence.

There is no set budget but ACC can look at cost effectiveness

as part of the decision-making process. However, cost

effectiveness is only one factor of many which ACC must

consider. For instance, it would likely be unreasonable for ACC

to decline equipment on the basis of cost only.

TRAVEL EXPENSES

The Corporation is liable to pay/contribute to the cost of

any service if it; (a) facilitates treatment and (b) is reasonably

required as an ancillary service related to treatment.

The legislation provides the following examples of an

“ancillary service related to treatment” (where relevant):

accommodation, transport and an escort for transport for

treatment.

ACC will only assist with a claimant’s travel and accommodation

for treatment or rehabilitation if it relates to a covered injury.

Prior approval for these costs is required and can be sought by

completing an ACC250 (Request for Travel Costs) form, which

can be found on ACC’s website.

If you wish to bring a support person, you must show that

she / he is reasonably required for the purpose of treatment

/ rehabilitation for the covered injury. This will be easier to

establish in the following situations: if the claimant is under

the age of 18; if the claimant has an injury / medical condition

that requires a support person; if the claimant is using

transport that requires a support person; or if the claimant

needs support for recovery and rehabilitation.

EQUIPMENT ENTITLEMENTS

1. What does the ACC legislation say about equipment

entitlements?

The provision of equipment (“aids and appliances”) is a

key aspect of social rehabilitation under ACC legislation.

ACC is obliged to provide claimants with aids and appliances,

including equipment, if necessary to restore a claimant’s

independence to the maximum extent possible.

This is the overarching principle but the equipment sought

must also be:

• Required as a direct consequence of the injury.

• Necessary and appropriate.

19


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THE BAIL BULLETIN

HAPPY MIDYEAR GREETINGS FROM ALL OF THE BAIL TEAM!

In 2018 the BAIL team had the privilege of meeting with the Hon

Carmel Sepuloni (Minister for Social Development and Disability

Issues) twice. The first was in April at the Beehive alongside the

Hon Iain Lees Galloway, and the second meeting was in May on-site

at Burwood Hospital campus. We were able to give Carmel a tour

of the Spinal Unit, and talk to her about the work we do at BAIL.

It was a great opportunity to highlight our dedication to research

based advocacy and reiterate the need to address the inequality for

people with a disability on non- ACC funding.

In early 2018 BAIL hosted a very successful consumer forum

which was attended by a variety of people connected through the

experience of living with a disability. The purpose of the forum

was to understand what the most important research priorities

were for people living with disability, and better understand how

to make research more engaging. Based on this forum we have

developed a survey asking people to rank the topics they consider

should be most prioritised by researchers. We have received great

feedback so thank you to everyone who has participated to date. If

you would like to complete the survey please visit:

https://www.surveymonkey.com/r/ResearchPrioritiesSurvey

KNOWLEDGE INTO ACTION

Rachelle Martin has recently joined the BAIL team as a Clinical

Researcher. Rachelle has just completed her PhD which evaluated

the effectiveness of Therapeutic Horseback Riding (THR) for

children living with the experience of disability. In summary,

findings from the research suggest that THR contributes to

improved participation in valued life roles for children experiencing

disability, regardless of their diagnosis. THR was found to be an

accessible activity, allowing meaningful participation for children

with a disability and riders experienced the THR therapeutic

landscape in a context which promoted their capacities and

strengths, rather than their difficulties. THR also provided

opportunities for a broad range of learning experiences, with

the child playing an active part in their own learning within the

intervention. These opportunities contributed to a rider’s enlarged

self-concept regarding how they moved, what they perceived

themselves to be good at, who they connected with, and how well

they coped with change.

Rachelle had the privilege of reporting back to the New Zealand

Riding for the Disabled Association (NZRDA) Board and at the

NZRDA national training seminar for THR coaches, therapists,

volunteers and regional board members – turning research into

action! It was valuable to be able to talk through the key findings,

and then to start to discuss in what ways the conclusions and

recommendations could be implemented within national policies

and processes, and in how THR is delivered within each of the 56

RDA groups spread across NZ. A real highlight was coming away

with a collection of questions and suggestions from people who

attended the workshop. These will help guide the development

of a range of resources (e.g. online videos, information sheets and

training packages) to be used across the NZRDA organisation.

So far in 2018, BAIL has conducted many interesting and

interactive workshops and presentations at Burwood Hospital.

Videos of our lectures and presentations are posted on our

website, so please check-in and also make sure to keep up-todate

on BAIL’s activities www.burwood.org.nz. Please contact our

Operations Manager, Kathy Duncan, if you wish to be added to our

newsletter subscription Kathy.Duncan@burwood.org.nz

From all the BAIL team, we wish you all the best for the rest of the

year!

POEM - PAIN

Pain. What words can be used to describe this feeling?

Burning. Searing. Encompassing. Overwhelming. Tingling. Isolating.

Withdrawn. Subdued. Limiting. Scary. Stinging. Frustrating. Angry.

Hopeless. Beaten. Cold. Unable. Spasm. Shaking. Uninspiring.

Embrace it, accept it, and fight it. Don’t let the flame go out and

don’t let the bastards get you down.

This experience, this being in the world, is all encompassing and

very powerful. It takes over your existence, your ability to think,

your ideas, your focus, your desires, your hope, your identity.

You disappear.

It severely limits your ability to be, and interact with, your family

and others around you. The smallest tasks are completely

overwhelming. Just opening your eyes is a success. Concentrating

and interacting in conversation is fighting back. Having the energy

to think of ways to mitigate the pain is exhausting: even painful.

A hot cup of tea. A hot shower relieving my head, my neck, and

my shoulders. Stretching, arnica cream, medication, warm weather,

sunshine, silence, laughter, and another hot cup of tea. The

painkillers are starting to take hold and the world slowly comes

into focus. Ideas enter my mind. Inspiration begins to return and

the flame burns brighter.

I feel hope: there is beauty, there is future, and there is love

from those around me. There is collective resistance against the

challenge; there is strength. There are no rules and there are no

limits: the world and life really is an opportunity to be explored: is

there a better panacea than that?

(Anonymous).

21


TIPS FOR WINTER

This year seems to me to be passing by incredibly fast

and winter has come upon us so quickly! The change

in seasons has been taking its toll around our work

place and it began a conversation about how each of us

manages our health at this time of year, especially as we

are all working together in a relatively small space, we all

know that coughs and cold bugs spread easily.

So I thought I would collate a few of the suggestions from

us and also the wider network, I asked the Connecting

People Facebook community for their suggestions. Below

is a compilation of tips that our network find beneficial.

We learn from each other, there might be something we

haven’t thought of trying before… We don’t know what

we don’t know!

22


TIPS FROM YOU

• Wear a beanie

• Get the flu vaccine each year and also ask about the

vaccines for pneumonia and shingles

• Eat a well-balanced diet, that includes fresh fruit and

vegetables

• Feel loved and wanted… it really, makes a difference to

your immune function

• Keep warm and dry

• Always wear thermals, tops and pants

• One thing we do is ask that carers / staff do not come to

work when unwell, or they will be sent home. There is

always hand sanitizer available and the enviroment where

our family member with an SCI spends the majority of

their time in is kept clean and warm, we use aromatherapy

oils in a vaporiser and topically. Keeping warm works well,

wearing thermals are great too. We all do our best to

keep ourselves away should we become unwell

• Face masks can help if you can’t keep your distance

• Merino, merino, merino. Pants, socks, tops, and beanie

• Hot water

• Aloe Vera juice, magnesium, fish oil, cod liver oil, zinc.

• Eat healthy and exercise

TIPS FROM NZST STAFF

• Wearing a beanie when sleeping helps to maintain

body temperature (especially for those who are follicly

challenged) total body heat loss out of your head averages

about 11 per cent of your total body heat

• Whenever I start to feel a cold coming on, slightly sore

throat, sniffle or feeling like I have a flu symptom I take

an aged garlic pill. These are far more potent than fresh

garlic. It may not stop the cold but it definitely gets rid of

it quicker

• Keep warm with extra layers

• Vitamin C and Echinacea each day, increase if you get any

symptoms

• Rub bottom of feet with Vicks

• Lemon , Honey, Garlic and Ginger Tea:

- 2 inch knob of fresh ginger root, finely minced

- 1 clove garlic, finely minced

- Juice of 1 lemon

- 1 tsp raw honey

- Pinch of Cayenne Pepper

- ½ cup boiling water

Add all ingredients to a mug and stir. If you prefer, you can

filter out the particles once you’ve steeped the mixture

for at least five minutes, or you can just eat all the bits.

Then drink it all! Drink several cups over the course of the

day. Recipe makes one serving

DIFFERENT WAYS TO GET WHAT YOU NEED FROM US:

• Recently we put out a survey and after reading through the responses we saw that there are people out there in our network

who are looking for ongoing support and information. So I decided to write a few words about the different ways you can

achieve this

• You can email us info@nzspinaltrust.org.nz or Debra.edmonds@nzspinaltrust.org.nz

• Phone us 03 3836881 NZST main office number or 3871305 Connecting People

• Check out our website , Wheelie Good Tips and Facebook

• We can skype you, call you, email you, text you or arrange for someone to visit you, or you can visit us if you are local

• Our prime purpose is to share support, information and possibilities. So let us know what you need and what best suits you

and we will do what it takes to make it happen.

• Also, If we cannot answer your question, we will find someone who can, or direct you to where you need to go

Please do not hesitate do get in touch with us, we are here waiting.

Thanks for reading!

Debz

Manager of Connecting People

Peer and Family Network

23


Q&A

BAILLEY UNAHI

Outward Bound Experience

Bailley Unahi said her Outward Bound Experience was a huge confidence

boost “to understand that I am still capable of a lot, with the right attitude,

support and equipment, anything is possible.”

Bailley Unahi is a young woman who has come to terms with her spinal

cord injury and discovered a new lease on life.

The 21-year-old, who is in her second year studying a Bachelor of

Occupational Therapy at Otago Polytechnic, sustained an SCI in March

2016 when she was attending a SIX60 concert in Dunedin.

Bailley was standing underneath a balcony, when it collapsed on top of

her along with about 17 other people. She sustained a T12/L1 complete

fracture dislocation. It is a moment she will never forget.

“I didn’t even have time to register what

the noise was when I was crushed under

the balcony and pinned to the ground.”

24

“I heard a very loud crack from above, that’s when I and everyone else

looked up,” said Bailley, two years on from the night of her accident. “I

didn’t even have time to register what the noise was when I was crushed

under the balcony and pinned to the ground. It was very heavy and

painful.”

People from the audience lifted the balcony debris off her, but Bailley’s

pain did not improve.

“I remember trying to move but nothing happened. I was lying on the

ground with my friends talking to me keeping me awake because the pain

was so much I just wanted to close my eyes and all of it to go away.”

Bailley has clear memories of TV cameras filming her in the ambulance –

her friends telling them to leave her alone – but it featured that night on

the network news which her sister watched in shock.

Her parents got the call that no parent ever wants to receive. They drove

from Winton to Dunedin in time to see Bailley being sent away in the

helicopter to Christchurch. At this stage, Bailley hadn’t been told anything

by the Doctors. She had no idea what a spinal cord injury was.

“I assumed that doctors could fix everything. I was very naive.”

She was admitted to Burwood Spinal Unit. Each day at Burwood she got

one step closer to normality and all the small things were exciting. She

enjoyed little wins like getting her tubes out, being able to eat and drink,

being able to sit in a chair without feeling nauseous and being able to go

outside.

“It was achieving all of these small goals that gave me motivation and hope

for the next day.

“I never really focused on walking again, as there was no movement or

sensation below my injury level and I was so busy trying to achieve my

small goals. It was very hard learning how to do all of these things without

the same use of my body I had previous to my accident, it was challenging,

frustrating and at times felt impossible.”

Bailley had many friends and family visit her at Burwood and she felt part

of a special community especially with the people she had met in similar

situations.

She found her time at Burwood very busy and tiring. The days were full.

They included physiotherapy, doctors, blood tests, X-rays, ultrasounds,

occupational therapy, physio appointments, meetings, urology

appointments, visitors and more.


“It was not just lying in bed ‘recovering’ like i had assumed.”

Bailley’s accident was on 4 March 2016 and she was discharged from

the Burwood spinal unit on 13 July 2016, but her recovery didn’t stop

there. She came back to her family home in Winton which was a huge

adjustment.

“Having to live in a place where you had lived your entire life which has

now become an environment with barriers around every corner of your

home is very frustrating.”

At first, Bailley thought she was going to be the miracle story who regained

everything and would walk out of Burwood, but the more her

journey went on, she realised that was unlikely.

“I felt like my life was over, I wouldn’t be able to do anything I enjoyed

ever again, I would just be a girl in a wheelchair. It was hard and I felt as

though it was very unfair. I always thought to myself; ‘Why me? What did I

ever do to deserve this?’ It was a grieving process. I had to go through the

process of accepting that this is how it was going to be now, and to make

the most of what I do have. I am so grateful for what I do have, and I try

to focus on what I can still do rather than what I can’t do anymore.”

She was scared she would be judged by the wheelchair and not seen for

the person that she is.

“I am still Bailley I am just sitting and it is hard to try and show that to

society when a lot of the time they don’t give you an opportunity to show

this. I am constantly becoming more aware of the inequality between

able-bodied and people with disabilities.”

In two years since her accident, Bailley has learned how to live with her

disability. She has travelled overseas twice, gone adaptive skiing, luging,

joined a wheelchair basketball team, been swimming in the pool, river,

ocean and lakes, gone kayaking, camping, biscuiting, cycling, been to

Outward Bound, went on the Nevis Bungy Swing, went to the Junior

Disability Games, gained her independence back so she can live in a flat

with her friends in Dunedin and gone back to full-time study.

“I definitely get out and do more, and I wouldn’t have been able to achieve

half of these things without the support from my friends and family. They

are always working out ways to make something work. There is a way to

do everything you just have to have the right attitude.”

When she had her accident she was studying a Bachelor of Science at

Otago University, but following her recovery she had no motivation to

continue. Occupational Therapy (OT) was a natural fit.

“I wanted a job that was going to be logistically achievable for someone in

a wheelchair and something that I was passionate about. OT ticked both

of these boxes. I hope to make a positive difference in my clients’ lives, and

show both able bodied and disabled people that you can be disabled and

still be successful.”

Bailley has high hopes for New Zealand and dreams of a society that is

one day fully accessible.

Through all the challenges on her journey, Bailley has maintained a positive

mind-set that is both inspirational and infectious.

“Life isn’t always easy but I have learnt that through all the tough times it

has made all of the highs that much more enjoyable.”

Bailley took her personal growth and recovery a step further when she

pushed herself to the limit with Outward Bound. We caught up with her

on what she called “a life-changing experience”.

Q&A

Why did you want to do Outward Bound?

I had always loved the outdoors and had heard of only great things from

the people I knew who had completed an Outward Bound course. I guess

it was a challenge I was keen to see if I could achieve. I did have a lot of

doubts about actually being able to do anything as a wheelchair user. I was

definitely proved wrong.

How did you first get selected to take part in Outward Bound?

I was on the Connecting People Facebook page when an advertisement

came up about the Adaptive Outward Bound programme that is for

people with a physical disability over 18. I looked up the website to see

whether I fitted the category to attend, and luckily, I ticked all the boxes.

On the Outward Bound website, it also said that full funding was available

for WINZ clients, so I filled out all the forms and went to WINZ and I

was chosen to attend the course in November 2016.

What was the experience like? Were you nervous?

In the beginning, I was so unsure of what to expect and how the logistics

of it all was going to work, especially if the bathrooms were going to be

actually wheelchair accessible. It was only eight months since my accident

and four months since I got out of hospital so I was still adjusting to life

with my injury. The journey of getting to Anakiwa was just as frightening

as the actual course was. I actually can’t even put the experience into

words, you have to go and see for yourself how much it will actually affect

your life. Which so many people who had been to Outward Bound told

me before I went, I couldn’t understand how it could be just so amazing

when it just sounded like a school camp. But I was definitely wrong, it

was physically challenging with the early starts and late nights which were

jam packed with all kinds of activities including kayaking down the Pelorus

River, camping, sailing, rowing, the high ropes course, daily ocean swims,

bush walks. It was mentally challenging without my phone to keep my

mind busy, but I had time to think and reflect on everything that had

happened.

Outward Bound is known for pushing people to the edge, did

you get pushed out of your comfort zone?

Yes. I was so used to playing everything safe and because each day was

unknown you didn’t have time to prepare yourself for what was on

for the day. But we always had the support of the rest of the group,

instructors and volunteers to encourage and help us when we needed it.

What was the highlight?

Meeting everyone at Outward Bound, and sharing the journey together.

As well as all of the physical activities we were lucky enough to take part in

– it was a huge confident booster for myself to understand that I am still

capable of a lot, with the right attitude, support and equipment anything

is possible.

How do you think this experience will help you in life?

Outward Bound was an experience which changed my life in the way that

I was able to experience the outdoors again. I was able to realise what

I was truly capable of, by being pushed to my physical limitations. I now

have the confidence to do anything I want. It gave me the opportunity to

break down the barriers I had set in my mind and I guess put in place the

trial and error method.

What advice do you offer to others who have an SCI and are

looking at doing something like this?

Everyone should give Outward Bound a go. After I sustained my SCI I got

into the habit of letting others do things for me that I was capable of doing

myself, the nurses at the hospital and my family and friends at home. I also

had a lot of doubt of what I was physically capable of doing anymore, but

the eight days I spent away at Anakiwa really opened my eyes, that I am

still capable of 99 percent of things. And the other one percent of things

I thought I couldn’t do, we would problem solve ways to find a solution. I

realised if you have the right attitude, the right people supporting you and

the right equipment you really can do anything you want to do.

25


FITNESS - JAZZ CALDER

26

Exercise has become an important part of my journey.

I am a comfort eater and have been for as long as I can remember.

After my injury and now with aging I find it is easier to put on weight.

I am a person who experiences anxiety and at times depression.

My weight over the years has fluctuated depending on my addiction

to food and levels of comfort eating, it has been an ongoing struggle

for me and one that I constantly think about when in that addicted

state which is also made worse by comfort eating then feeling bad

about myself, low self-esteem and getting into a perpetual cycle of

behaviour where one encourages the other.

About 10 years ago I started going to the Parafed gym and met

a trainer there who guided me through an exercise programme

to help also with core strength. A lot of the work I did I have not

retained though the few exercises that I did has had such a positive

effect on my life and still does.

“The benefits of exercising every second

day where possible have been and still are

important to me.”

I used the hand cycle as a warm up tool and cardiovascular workout,

it was suggested I hold my tummy muscles in while hand cycling. I

recall I could only do this for a limited time to begin with I think 30

seconds. Now I hold my muscles in I was excited to know I could

do this. I’m a T5 complete and I found muscles up higher were

triggering lower ones as connected and over time I was able to hold

for longer periods than 30 seconds now I hold my muscles for the

whole duration of cycling time 30 minutes and have noticed how

doing this has helped tone my tummy.

The benefits of exercising every second day where possible have

been and still are important for me. I start my day better with the

kick of endorphins and it has helped me keep my weight down over

the years when struggling with my food addiction.

I am learning to eat healthier foods and learning that the foods I eat

also influence my moods and have recently read a book about this.

In this book the author has written about her experience of healthy

eating and keeping her moods up. Even though I haven’t read

through the whole book I am taking what I need from the recipes

included to help me alongside advice from others.

I am exercising on my hand cycle every second day and I am

continually learning about being kind to myself and about self-love.

My over eating is a reflection of how I am taking care of me or not

and along with some tools I now have I am learning to be different

around food and not eat my feelings.

Being a comfort eater I will always need to be conscious of my

behaviour with food and respectful of myself. I now feel more

confident that I can take charge and make good choices.

Learning to exercise every second day on a hand cycle which I use

in my bedroom has helped me with my moods and self-esteem.

Eating yummy healthy foods that don’t deprive me of the pleasure

or enjoyment will continue to help me going forward in reaching my

goals of a healthy lifestyle. Taking off the extra weight that weighs me

down physically and emotionally will allow me more pleasures in life

giving me a better quality of life. Alongside my ability of being able to

go camping again and being close to nature. I now I have a van that I

have fitted out to enable this.

One day at a time.


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27


Lynda says she has no regrets about

how life has been and advised others

with an SCI to live the same way. “If

you are like me, you will get great

pleasure from being praised for your

fortitude rather than your sorrow.”

LYNDA SCOTT

49 Years in a Wheelchair

28

The day 20 July 1969 will forever be momentous in history. American Neil

Armstrong, who took the first steps on the surface of the moon, said the

now iconic words “one small step for man, one giant leap for mankind.”

Back here on earth, that day was unforgettable for Lynda Scott for entirely

different reasons.

A 15-year-old Lynda fell ill with a high temperature and severe pain in her

back. Her GP, who did house calls in those days, didn’t know what was

wrong. They treated Lynda for pleurisy, pneumonia and kidney infection.

“He told my Mum that I probably just didn’t want to go to school,” said

Lynda, who is now 64-years of age and has had a lifetime to reflect on

those fateful days.

By day four Lynda was vomiting and delirious and the doctor was

perplexed. She was admitted and put on morphine to ease the pain. The

house surgeon visited and Lynda told him she didn’t have much pain but

her feet and legs felt tingly but nothing was done.

By morning, she had a strange feeling – she was adamant her feet had gone

through the mattress and were sitting on the floor. She had a spinal abscess

which had caused irreparable damage.

“I was a T6 complete paraplegic,” she said. Action was then swift, but it

was too late. She spent three weeks in intensive care in Palmerston North

Hospital and was then moved to the Orthopaedic Ward for a further four

months.

Lynda remembered that the GP had sent her mum (who had been

widowed seven years earlier with four kids to care for) a bill for all the

house calls, which she duly paid. Lynda was a naïve teenager at the time and

the gravity of her situation didn’t really hit.

“Suddenly, I had a huge number of people around me, teaching me how

to live as a paraplegic, teaching me how to manage bladder and bowel,

physiotherapy, wheelchair management and just life in general. I just didn’t

have time really to dwell on the massive change to my life. Perhaps I was

too young to fully understand my predicament.”

Her mother suffered huge sorrow at her daughter’s situation. It was hard

enough accepting that her daughter’s life would never be the same again,

but it was even more difficult for her to accept the alleged negligence.

Lynda said; “the GP and house surgeon at the Palmerston North Hospital

were negligent in that they took no action to help me when I was so

obviously critically ill. Years later, we heard that many aspects of my case

were hushed up and I tried to recover the medical records from the

hospital, but was told they had been destroyed, which would have been

untrue”.

“It’s too late to remedy anything now. Accusing a doctor of negligence just

wasn’t done back then and because there was no support, I just had to get

on with life.”

And get on with life she did. When you hear her story, it underlines how

tough the rehab process was 50 years ago. It was a world away from

today’s experience.

“She had never heard the word ‘rehabilitation’

before. It was a buzz word with the news

that Burwood was going to be built and

that paraplegics would be going there to be

rehabilitated.”

She had never heard the word “rehabilitation” before. “It was a buzz word

with the news that Burwood was going to be built and that paraplegics

would be going there to be “rehabilitated”. Unfortunately that didn’t

happen for another 10 years so the physios did what they knew, but

there was no specialist physiotherapists in existence. ACC didn’t exist

then either and SCI patients were left very much on their own without

support.” Lynda remembers she had no social support or counselling.

“I slowly gained some movement back and while in hospital, I was going

to physio daily. A physio student called Mark Oram got me working on

core strength and pushed me to the limit. In the time he worked with me,

I found new strengths and inspiration.” Once the students went back to

Dunedin, the physical recovery assistance was sadly lacking. Good luck

rather than good management was the key to recovery.

“I’m sure with today’s processes and knowledge, I could have regained so

much more mobility where I wouldn’t be in the position I am now.”

Occupational therapy consisted of making rope doormats by macramé.

This was to strengthen her arms. “I made a lot of mats and had a thriving

business there for a while selling them to everyone who would listen. I

probably owe the government something for the rope I used!”

She has clear memories of the process of selecting her first wheelchair. It

consisted of “here is a pamphlet, which one do you want?” There was no

fitting, no customisation.

Lynda said she had been very lucky. She regained a lot of movement and

strength which was a blessing that she was truly grateful for. “I’m fortunate

that by the time I reached 18, I no longer needed a chair, walking on one

walking stick as my shoulders would be totally ruined if I’d continually used

a chair like that.”

Home life was a challenge. They had no assistance with converting the


house to make it an accessible home. A builder friend made a ramp for

them but with no guidance, the slope was about 4:1! “I couldn’t get to the

toilet at all so had to use a commode and showering involved leaving the

bathroom door open because the doors of the house were all too narrow.

“There is nothing like a bit of motivation to get walking! No funding was

available to make changes to the house and Mum had no money to do so.”

Lynda spent the rest of 1969 and 1970 away from Palmerston North

Girls High School and continued her education when she could by

correspondence. She went to physio and generally was “hidden from the

world”.

That changed in 1971, her sixth form year, as Lynda went back to school. It

was hard going. There were no accessible toilets, no ramps, and the science

lab was upstairs.

“Classmates fought to carry my books upstairs and I followed on my bum

up the stairs, another friend dragged my chair upstairs and I got to the

class, usually late. As half of the class was involved in this manoeuvre we all

got into trouble just about every time. No consideration was given to me

needing any adaptions at the school and I just needed to deal with it myself.

I remember the Crippled Children Society (now CCS Disability Action)

being involved but it didn’t make any difference.”

“My friends were kind, but it was a time when they didn’t want to deal

with someone who wet themselves (no incontinence products then) or

had “accidents” and who didn’t fit easily into the back of a Mark II Zephyr

so it was just Mum and me and our family. My late teenage years were an

incredibly lonely couple of years. “

She wished that she had gone to University after school, but it wasn’t an

option because her family couldn’t afford it. Instead she worked in various

offices, married and travelled around Australia, working her way with

her then husband. She ran a business, mowed lawns, gardened, sat on

committees at school and lived in North Queensland for some years.

She walked through both her pregnancies and produced two beautiful kids

who are now adults and “I’m now married to an amazing man who is so

caring towards me. My life has been one I’m forever grateful for.”

Lynda has deteriorated in the last 20 years and now uses a wheelchair 95

percent of the time. Scoliosis, damaged shoulders and spinal deterioration

have all impacted her motivation to exercise regularly.

“I have no regrets about how life has been. Regrets only breed anger and

resentment. Life is what it is.”

She is proud of the fact that she has worked fulltime throughout most of

her life and while she doesn’t have the same limitations as many others

with SCI do, her never-give-up attitude has played a big part.

Lynda is now semi-retired. She works as a Volunteer coordinator of

Kaikoura Community Op Shop. She has made a difference in her adopted

community – they have raised $300,000 for the Kaikoura Community all

through voluntary work. Earthquake damage to their house caused a

further and final move to Port Underwood in the Marlborough Sounds –

and she is content. A typical day can involve anything from planting trees, to

gardening, to book keeping for the shop, to just general living.

“I’ll just happily relax and look back on, what I call an unremarkable life,

but hope that at the end of the day, I have made some people happy,

haven’t upset too many people and impressed some people with my

determination and fortitude.

“But then there are lots of us old SCIs (not age but length of SCI) out

there having done exactly that. I feel my life has been enriched by my

disability. I haven’t missed out on much and in fact have experienced things I

doubt I ever would have if I had been able bodied.”

Q&A

Lynda Scott has a simple outlook on life. “My motto is,” she said. “You get

one shot at life and whatever circumstances you find yourself in is still

better than being 6 feet under.” We asked her how she has coped with

the mental battle of a spinal cord impairment over the past 49 years.

How do you suggest people accept the reality that they may be

in a wheelchair for life?

There is an initial grieving period of the loss we suffer when we get

an SCI. I can’t say I didn’t grieve, but I don’t remember it. Perhaps my

mind doesn’t want to remember it. I believe that it’s great to have all the

opportunities today to help with rehab, but eventually the thing that is

going to help your recovery the most is to accept the new norm in life.

It’s nothing like you ever imagined, but acceptance gives you a strength

you never knew you possessed. It’s a challenge to face the world in a

wheelchair.

By all means, take the opportunities presented to try techniques that will

improve your quality of life, continue to be motivated to keep yourself

as fit as your disability allows, eat well, become a good friend with a

GP you trust and your support people. Socialise, push yourself into a

society that will be taken aback when you wheel in and make a stand!

Gain meaningful employment and aim for qualifications that will lead to a

more meaningful job if you aren’t happy with the one you have.

Find the good in all your experiences and amaze everyone with your

positive attitude (believe me, you can be feeling like crap after an

experience, but if you laugh about it, others will embrace your attitude

and love you for it). Joe Bloggs doesn’t give a stuff that you are being a

misery guts, but showing you have great attitude creates an aura around

you that make people want to be with you. As time goes by, your new

life becomes the norm.

What are some of the ways that you have been able to stay

positive and keep pushing what you can do? How important is

winning the mental battle?

The mental battle for me was when I saw how crushed my Mum was

when I fell ill. It became a challenge to make her and the rest of the

family comfortable with our new situation. I don’t ever remember

being depressed, or feeling that my life wasn’t worth living but I know

everyone has a different view on their circumstances. I have always

treated life as an adventure, have a rant / cry and then get on with it.

Mind you, I still can’t believe that my mother paid the GP!

You touched on the fact that with aging bodily functions

deteriorates - is it hard to continually be faced by challenges

along the journey? How do you overcome them?

Changes in my spinal deterioration/ scoliosis, has meant that, now

more than ever I am using my wheelchair. I’m getting used to it. Spinal

deterioration has affected bladder and bowel functions but I face each

issue as it occurs, adjust to the changed circumstances and get used to it.

I take one day at a time and gradually adjust my life to the changed

circumstances. I keep in mind that we only get one chance at life and the

good things still far outweigh the bad so adapt as necessary.

What advice do you offer to others who have sustained an SCI

and are at the start of their journey?

The challenges and the changes you face in your new life are mind

boggling. Grieve by all means, but there is a great life out there to be

had. It’s not the same life that you had programmed in to your being,

but is still an awesome one. Make the most of your ingenuity, grit and

determination. If you are like me, you will get great pleasure from being

praised for your fortitude rather than your sorrow. If you are fortunate

enough to be under ACC, use them to the fullest extent to which you

are entitled, but don’t get stuck on the mind-set of how much you need

to screw from them to be happy. Happiness and self-pride comes from

within, not from another payment from a support organisation.

29


Thank you to our

FUNDERS & SPONSORS

THE NEW ZEALAND SPINAL TRUST APPRECIATES THE GENEROUS SUPPORT OF THE FOLLOWING FUNDERS OF THE ORGANISATION.

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.

NZ COMMUNITY TRUST

RATA FOUNDATION

MAINLAND FOUNDATION

CHRISTCHURCH CITY

COUNCIL

NZ PUB CHARITY

CENTRAL HEATING

NEW ZEALAND

FOUR WINDS

FOUNDATION

OSTLER VINEYARD

LOTTERY GRANTS BOARD

HARCOURTS

FOUNDATION

THE SOUTHERN TRUST

CANTERBURY DISTRICT

HEALTH BOARD

THE LION FOUNDATION

FOUNDATION NORTH

UMBRELLAR

PUKEKOHE PARK

COUNTIES RACING CLUB

HEALTHVISION NZ

FREEDOM MOBILITY

HEALTHCARE

REHABILITIATION

COUNTIES MANUKAU

DISTRICT HEALTH BOARD

Woo Hoo

THE ELIZABETH BALL

CHARITABLE TRUST

PARKLANDS

SUPERVALUE

THE REHABILITATION

WELFARE TRUST

ARE YOU A MEMBER?

It’s easy to join the New Zealand Spinal Trust and it only costs $30 a year. Your membership fee helps with the printing of the

Spinal Network News magazine and supports the work we do assisting people with spinal cord impairment find their future.

Go to our website home page and click the green Membership Button www.nzst.org.nz

30


Stand Without Compromise

For more information please contact:

E: sales.nz@permobil.com

P: 0800 115 222

www.permobil.co.nz

31


Molift Smart 150

More comfortable

With a 4 point suspension,

the sling is more open

with reduced pressure.

The client has no barriers to

visual communication

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Folds up in under 15

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it away in a cupboard

when not in use.

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lifter

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Lighter at only 25kg,

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very easily.

More convenient

With a travel bag on wheels

you are ready to go. Includes

a safe compartment for slings,

battery and charger.

Ask for a Trial

0800 238 523

View

32

our videos online

www.mortonperry.co.nz

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