SNN December 2018

hansnzst

Dayna Tiwha

We talk with world-class mouth

painter Dayna Tiwha

Kaleidoscope helps two

Kiwis to get back to work

Brett Ladbrook has an unforgettable

experience in Samoa

The National Magazine of the New Zealand Spinal Trust December 2018 Volume 21 Issue 3 ISSN 1175-4573

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CONTENTS

EDITORIAL....................................................................................... 2

HANS WOUTERS - FINDING FUTURES....................... 3

JOSEPH DE THIERRY - A MENTOR ON A

MISSION............................................................................................. 6

DIFFERENT STROKES - MOUTH-PAINTER

DAYNA TIWHA............................................................................ 8

APLIC18 CONFERENCE WITH

DR. BERNADETTE CASSIDY................................................. 11

LIBRARY - NEW ADDITIONS.................................................. 13

THE WHEELCHAIR CHALLENGE.................................

JOHN MILLER LAW - KNOW YOUR RIGHTS............ 17

KALEIDOSCOPE FEATURE - AMY GLASSFORD

REDEFINES RESILIENCE........................................................... 18

NZ SPINAL TRUST WELCOME BACKPACKS............. 20

THE BAIL BULLETIN..................................................................... 21

“GRIPPER’S RACE DAY”............................................................ 22

CONNECTING PEOPLE - BRETT LADBROOK

SAMOAN SOJOURN................................................................ 24

FAREWELL TO DR. LINCOLN JANSZ............................. 27

KNOCKING IT OUT OF THE PARK - IAN

MCDONALD TALKS ABOUT HIS CAREER.................. 28

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

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 and

Jharna das Gupta for their 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.

15

EDITORIAL TEAM

CONTRIBUTING WRITERS

Peter Thornton

Hans Wouters

Dr. Bernadette Cassidy

Mike Brown

Brett Ladbrook

Melissa Kelly

Eddy Bramley

Elizabeth Bransgrove

Patrons of the

New Zealand

Spinal Trust,

Sir Tim Wallis

(left) and Trevor

Harrison (right).

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. A special welcome

to Jackie Grimshaw and Jharna das Gupta who

has helped proof-read this December issue and

has done a superb job.

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’.

Angela Brown

Charlotte Kerr

Beatrix Woodhouse

Thanks to Dayna Tiwha, Ian

McDonald, Joseph De Thierry,

Amy Glassford, Bernadette

Cassidy, The BAIL Team, Hans

Wouters and Brett Ladbrook for

the images used in this issue.

Cover Photo: Dayna Tiwha is a professional mouth-painter. He encourages all

people with an SCI to get into the craft.

2


EDITORIAL

SOMETHING TO LOOK FORWARD TO...

I am like a kid in a candy store. I cannot contain myself. Touch rugby

season has arrived and it is without doubt my favourite time of the

year. I am driving home and I can feel the warmth of the sun on my

skin. The grass is green and I am itching to get out there and play. I

quickly change from my work clothes into my touch rugby singlet and

shorts and walk up the road to the local park.

The next two hours are the highlight of my week. It is time away from

all of the stress, my iPhone which is a constant source of calls and

problems, time without the kids and time where I can be totally free

and have fun. It is back to how life used to be.

I sit down on the edge of Windsor Park, a ground where I have spent

more than half of my life playing rugby, and know that I am lucky to still

be here. I have suffered my fair share of injuries and hardship through

sport - it has been 21 years since I broke my neck as a 17-year-old

playing rugby. I still reflect on how lucky I was that day, it could have all

been so different. But I am happy to be back here, in so many ways

this field is my home. There is no place I’d rather be. Our team’s battle

away and notch up two untidy wins – the saying “the older I get the

better I was” comes to mind – but I have to have some perspective.

I walk to the side-line at the end of the game and I take a moment to

look around. There is a laughter and happiness in every direction…

sport has a unique ability to bring people together. We have a few

pints after the game to talk about our wins and more importantly

to reminisce about how good we used to be, before we go back to

reality.

Sport. Beer. Laughter. It is good for the soul and I need it each week.

So what is my point, I hear you saying? Good question. I ponder the

same thing as I put on my jandals and begin my short wander home.

The point is I need something to look forward to each week to be

at my best. We all do. We all need something to get excited about.

From October to March, I have it in touch rugby. I love everything

about those summer nights. While my wife Katie might get tired of me

talking about or planning our life around my one night of the week, I

don’t care, I love it.

But I know that I don’t do enough of this stuff. For roughly 20 nights

of the year I am in my happy place, but what about the rest? How

intentional am I with my life?

How much stuff do you have in your life that gets you excited? What is

getting in the way?

For me personally, I am pretty good at having that one event in the

distance that I look forward to and work towards – like the summer

holidays at the Bach at the end of the year – but that often feels out

of reach and is not enough. I need regular things that are different and

exciting – going to see my favourite band play live, getting out for an

early morning run along the beach, reading a fictional book, mowing

the lawns, playing golf with mates – all escapism to make the grind of

life achievable.

American author Rita Mae Brown summed it up best when she

wrote “Happiness is pretty simple: someone to love, something to do,

something to look forward to”. The ‘something to look forward to’

part is probably the biggest challenge for our generation when time is

at an absolute premium.

Now don’t get me wrong, I love my wife and two beautiful daughters

more than you can imagine, but time away from the little monsters

is also special. It makes me a better Dad. Yes Mum needs that even

more – the day-to-day routine of looking after two kids under three is

relentless – and that is another column in itself.

Back to the touch rugby… my mates and I fix most of the world’s

problems after a couple of pints. I tell them I am looking forward to

the day when I don’t limp over the finish line to complete the year. I

tell them the first week of my holiday is mostly napping and catching

up on sleep. It is met with a chorus of “Me Too’s”. Everyone is busy.

Everyone is under the pump. Everyone is giving their all for their

families. We are in our mid to late 30s. We have young kids and dream

of days gone by.

It is important to have things to look forward to – but even though

that is my point – maybe the solution is actually in the antonym. Part

of the solution is enjoying each moment of every day. Easier said than

done in the stress and pressures of modern day life I know, but it is

attainable.

“Stop. Slow down. Life will never be the same

again so soak up where you are right now with the

people around you.”

Too often in life we get caught up looking at what is coming on the

horizon and we don’t celebrate what we have achieved or actually stop

to soak up how good life is around us. My three-year-old daughter

giggling when ‘Daddy Monster’ is chasing her, a high-five from my Old

Man on the golf course after I smash a drive down the middle, a hug

and a kiss from my beautiful wife when I get home, a room filled with

laughter and banter with mates who are as close as family.

Stop. Slow down. Life will never be the same again so soak up where

you are right now with the people around you.

I am home now. I’ve had my run around at touch rugby. I’ve had a

couple of pints and I have walked home weary but happy. I am already

counting down to next week. I pause before I open the front door.

It is important to have something to look forward to, but it is just as

important to make sure the golden moments of everyday life do not

pass me by.

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FINDING FUTURES

THE CEO’S COLUMN

The chopper carrying Nick Wallis’ casket and the ashes of Matt

Wallis spiraled up and up with its companion helicopter just behind

until they were small specks directly above us, then they flew into

the Southern Alps. The thought of losing two sons within three

months, both leaving wives and children behind is horrendous and

inconceivable. For our beloved Patron Sir Tim Wallis and Prue

Lady Wallis this will no doubt be the most challenging time of their

lives and goodness knows they have had plenty of challenges. Our

Trust board and Staff are feeling strongly for the Wallis family at

this time as I am sure many of you are.

Grief is a powerful emotion which will visit us all during our lives.

An example is when someone has a spinal cord injury, the sense

of loss can be devastating and can rouse different responses in

us all. The good advice found in this poem by Eli Jenkins is worth

considering.

Do not hurry - As you walk with grief;

It does not help the journey.

Walk slowly,

Pausing often;

Do not hurry - As you walk with grief.

What do you do if you are at odds

with your ACC case manager?

If you are having issues (recent or longstanding) I encourage you

to reach out to ACC beyond your case manager. There are

three ways you can do this, phone, email and online feedback.

The ‘Feedback’ function sits over every page on the ACC website

www.acc.co.nz and if you select “I would like to be contacted re my

feedback” they will do so within 24-48 hours.

Some of my CAP colleagues are saying ACC is responding through

these methods very well and they are getting results. If you go

through this ACC process and still have an unreasonable outcome

please get in touch with me directly. I will see what I can do for

you.

0800 650 222 customerfeedback@acc.co.nz

Since the middle of this year I have been doing a lot of work with

ACC in their Customer Advisory Program (CAP). The NZ Spinal

Trust is one of 10 organisations representing ACC’s serious injury

customers. As a consequence I have been conversing with many

of you and am not surprised by the polar opposite experiences

many of you have had. Here are just two quotes. “ACC have

been super great in my case. I cannot imagine any of it happening

any differently.” And another: “We were not informed at all. We

learned from others at the spinal unit and the nurses and other

patient’s wives who were already battling the system how to get

answers from an uncooperative unfriendly system. Getting hold

of a constant contact person was impossible. Messages were left

unanswered.”

The Serious Injury Team that I am working with is well aware of

the problems and they genuinely want to do better and deliver

more consistent results. In June I had the encouraging pleasure

to hear ACC Chief Executive Scott Pickering speak where

he addressed the elephant in the room – ACC’s inconsistent

performance. His address was heartfelt and compelling which

concluded with a strong encouragement for us to tell ACC

where they are going wrong. In fact he asked us to make him

feel uncomfortable. It is safe to say we are obliging Scott and his

serious injury team.

Much of ACC’s issues originate with their case managers whose

manner and performance is at times very poor. In saying that there

are of course many outstanding case managers with whom some

of you are completely satisfied with. There is no doubt building

a strong open relationship with your case manager is the key to

addressing your needs well. What do you do if you are at odds

with your ACC case manager or finding they are not listening?

As we close out 2018 I want to express my sincere thanks to my

staff and board for their hard work and support. I also want to

thank our wonderful supporters who make this all possible. It has

been another big year and I am thrilled with the many advances we

have made to better support people living with the effects of SCI.

2019 sees us celebrate our 25th year and celebrate we will.

With preparations for Christmas and the holidays almost

concluded I wish you and yours all the very best for the Christmas

period.

4


5


KALEIDOSCOPE Q&A

JOSEPH DE THIERRY

In July 2015, Joseph de Thierry’s life changed forever. He fell from a 6m high fence and landed on his back and neck. He twisted his

spinal cord and fractured his spine at C3/C4. It was the worst time of his life and he went to some pretty dark places. Now two years

on, de Thierry has trained hard to begin walking with crutches and also to return to work. Joseph (46), who has lived in Auckland since

his debilitating injury, has turned his attention to helping others with an SCI (and other personal trauma) to see how they can still live an

independent and fulfilling life.

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How have NZST and Kaleidoscope helped you on your journey?

I deal with Lesley [Jones]. She is awesome. Anytime I am feeling

down, I talk to her and she is there to pick me up and help me

understand if there is anything I am doing wrong. She has been

a great motivator and has been a mother for me in many ways. I

can’t speak highly enough of the Kaleidoscope programme. The

team gave me the motivation to get back into work. I honestly

would not be where I am at right now without their support. Their

support systems were so valuable for me. For the last four/five

weeks I have been on crutches and I have been trying to get out of

my wheelchair as much as I can. It is a new thing for me. I have

the strength and balance to walk with crutches now; it is another

positive thing that has happened. I kept stretching and training and

made some really good progress. It is amazing what you can do

with encouragement and if you keep going.

How did you get back into work?

Through the company that looks after me – Royal District Nursing

Service New Zealand (RDNSNZ). They are carers and are

supplied. They look after me. They asked me if I wanted to do

some work. I had been talking to patients and clients about life

after injury and I sat back and thought why not? It has been good

fun. It is flexible. It is casual right now and not full time; they call

me when they need me, when they have special needs people who

suffer a spinal cord injury. I can hopefully help them through the

process or give them some ideas on how I adjusted to a normal

life, or getting back to some sort of normality.

What advice do you offer people in this frame of mind?

I bring up different ways of dealing with things. At the beginning

you can go to dark places and that is normal. Even I went to some


pretty dark places and that was hard to get through. I encourage

people in those times to speak out. To really speak your mind.

Obviously everyone is there to help you, but they can only help

you when they know what is going on. It is about utilising the

resources that you have. Talk to your family and friends.

Are you acting as a mentor? Do you enjoy it?

Yeah it is very much. Yes, I am enjoying it. I am lucky enough to

know all about my injury and what that journey is like. My advice

is from first-hand experience so, hopefully, that helps steer them

through the dark times. One of my friends lost his eye a few

weeks ago. He rang me up and we talked for a few hours. He was

in a very dark place and all he wanted to do was kill himself. He

had been assaulted and he lost his eye. He was in a dark place with

the way his life was panning out. It took him a little while to get

through it. He wanted to know the process in terms of how ACC

will support him and work and all that practical sort of stuff. So

he needed some help and I also helped him with dealing with life

after his injury. Especially after something like losing an eye – it is

a massive personal trauma – and I said to him “Mate I understand

you are feeling the worst you have ever felt in your life, but life

goes on.” He has kids and a wife and they all need him. I said

to him you can have a better life no matter what you have gone

through. He knows a bit about what I have been through with my

injury, so he took it all on board. This is a guy I have known my

whole life. I said to him on the phone that life goes on and you

will have a lot of moments you can enjoy along the way. Every day

and every week you just have to get on with life, be there for your

kids and your family. I feel the role comes pretty naturally to me. I

know how they feel and I can be compassionate to what they are

going through.

How many hours/what is the process like?

Sometimes 2-3 hours/week. It can be more. Lucky the company

looking after me was looking for someone. Even talking to some

of the older people, sometimes I just sit there and listen to them

and make them feel comfortable. There is a lot of loneliness out

there, especially with the elderly, and it is important to be there for

people. There are never enough people to help. I am lucky to be

mature enough to listen and also yarn with them.

“It showed once again just how strong the

mind is - the body may want to give up but

the mind will keep going.”

Are you pleased to be back working? Does it give you a personal

sense of pride?

Absolutely. I am still training at the gym doing Cross-Fit and

bringing in guys to come and try it. One of the guys just had

surgery on his shoulder and my coach brought him and he loved

it. As hard as it was, it was really awesome for him to be in there.

He had shoulder surgery a year ago and he was a bit worried,

but I said you have just got to try stuff and see how you go. He

was blown away by how much he enjoyed it and it motivated him

hugely to be working out with the lads. It showed once again just

how strong the mind is - the body may want to give up but the

mind will keep going.

Do you recommend others who have had an SCI to get back into

work and overcome any fear or trepidation?

Totally mate. It is massive for your personal pride to be

working again. Even myself I want to feed off other people and

their determination. As much as I feel strong myself, I need

encouragement. I want to be better and stronger. I see other

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

people in wheelchairs and what they are capable of and think I

think I want to be that guy, I want to be as strong as him. It is all

encouraging and you can’t help but feed off other people’s energy.

Whether that is someone training or someone like me sitting

down and listening with someone and just hearing their problems.

We all need that. It is such a big thing that has happened in our life

and you need support to get through the hard times.

Do you have a long-term goal for this work?

Yes. Totally. I would love to get back into part-time and then fulltime

work as soon as I can. To me I am always working towards

my next goal. I worked in my last job for 21 years [management

and supervision] and it was all about the enjoyment. I want to

keep building in this role and keep enjoying what I am doing. I

used to mentor people from being just an average worker to get

them to whatever level they want to be at. I had a team of 14

staff, sometimes 30, and was in charge of running the show.

You have a really positive outlook on life. Where does that come

from?

Well, when you get a second chance at life you want to take it by

the horns and make the most of it. Be grateful for what I have. I

have great people around me and I enjoy those moments. Life

could have been so much worse, but it wasn’t. The goal is always to

get back and enjoy life.

7


On the tip of his t

8

Dayna is paid a salary to paint full-time as an artist for

the Association of Mouth and Foot Painting Artists of

the World (AMFPA).


tongue

By Mike Brown

He makes it look easy is a saying I could never imagine being

connected with mouth painting, but as professional mouth painter

Dayna Tiwha explains, it’s not difficult to begin learning.

“If you want to take up mouth painting or painting in general, you

don’t need many supplies,” he said. “I started on acrylics first, and

borrowed some mouth sticks from a few friends. I then put the

brush into the mouth stick, and placed the stick in my mouth.”

“I used to write with my right hand, so I hold the

mouth stick in the right side of my mouth to get

that equilibrium with myself. This helps my brain

to know I work with the right side.”

Dayna, a quietly spoken tetraplegic who lives in South Auckland,

sits in his power-chair with the concentration of a hawk, as he

masterfully applies his brush to the canvas in front of him.

“I used to write with my right hand, so I hold the mouth stick in

the right side of my mouth to get that equilibrium with myself.

This helps my brain to know I work with the right side.”

Taking a breather as I asked more questions, Dayna admitted the

first of his 50 paintings were “pretty ugly”. I have to laugh when

I think about how someone would have described any attempt I

made.

“I used to hold the brush too tightly at the start and I found my

jaw would be in a lot of pain. I soon learnt it doesn’t have to be

held that hard.”

Reflecting on where he is now, Dayna smiled and admitted “it’s

great to see the progress”.

He shared his love of storytelling through art and beamed with

pride when I asked him about the portrait he painted of his niece

and her baby.

“That one took quite a long time to get the skin tones right. It’s

all about learning how to mix the colours and how to get the

different tones by adding in white to the warmer and brighter

tones, and the darker colours blend in with the whites.”

I can only imagine the frustrations one must overcome to do this,

and Mr Miyagi berating the Karate Kid springs to mind – focus is

required Daniel-San, in order to mouth paint.

Dayna is not often alone when he is painting. He needs his carer

next to him most of the time to help with accessing the paint and

setting up his mixing tray, but that is where the assistance stops. It

is clear, as I look at the art on the walls that years of practice are

certainly paying off.

Dayna is paid a salary to paint full-time as an artist for the

Association of Mouth and Foot Painting Artists of the World

(AMFPA), which has given him the opportunity to paint in public

places, such as the Easter Show, schools, and shopping malls and

sometimes to Australia to paint at the Easter Show over there.

Dayna has the final word before I leave him to work on his latest

masterpiece, “I really encourage everyone to give mouth painting,

or painting in general, a go. It has been so therapeutic for me.

It has really helped me to use my imagination, and I have done

paintings I never thought I would be able to do.”

Great work, Dayna, much respect.

We are proud to have Dayna’s cityscape of Auckland on the front

cover of this Spinal Network News.

9


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10

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Dr Bernadette Cassidy says after attending and presenting at

APLIC 18, she has learnt new ways to collaborate for her diverse

library community.

ASIA-PACIFIC LIBRARY AND INFORMATION

CONFERENCE (APLIC) 2018 GOLD COAST CONVENTION CENTRE

Q&A

Dr. Bernadette Cassidy on presenting at the Asia-Pacific Library and Information

Conference, Gold Coast.

How did it come about that you presented at the Asia-

Pacific Library and Information Conference?

There was a call for papers, I submitted a paper to be peer

reviewed which was accepted. I then had to source funding

so that I could attend!

What did you present on and how was it received?

I presented on how the closure of the Allan Bean

Centre Library following the Christchurch earthquakes

has impacted on patients and families / whanau. This

necessitated a certain amount of daring to reinvent

the Library service through a number of initiatives. My

presentation was well received and I even made it onto

Twitter!

A powerful image of a library being of service to a user, at

the Allan Bean Centre (NZ Spinal Trust), before the building

was demolished after the Christchurch earthquakes. They

may have lost the building but rose to the challenge with

new initiatives. #aplic18 @bernicass

@bernicass the Allan Bean Centre Library is like Switzerland,

a neutral space. Not a hospital ward. A place of learning,

escape and empowerment for patients with spinal cord

injuries #APLIC18

@bernicass what are the options when your library has

been unexpectedly destroyed (say, in an earthquake).

Rebuild? Relocate? Reinvent? #APLIC18

APLIC 2018 is the first joint conference between three

library associations; the Australian Library and Information

Association (ALIA), Library Association of New Zealand

Aotearoa (LIANZA), and the Library Association of

Singapore (LAS). APLIC 2018 was an opportunity to join

delegates from Australia, New Zealand, Singapore and

around the world to connect over common interests,

explore future trends and learn from the experiences of

libraries engaged in a diverse range of cultural contexts. The

conference had three themes Roar, Leap and Dare.

Roar – how do we advocate for our communities? How do

we promote and demonstrate the value of what we do?

Leap – how do we leap forward and build momentum?

Dare – what risks are we taking in our organisations and

work lives? What are the stories of revolution or evolution,

success or failure, in your library?

Explain what the conference was like, how many attended,

for how long, key material covered...?

Nearly 600 delegates attended for the five days which

included pre-conference workshops. We were welcomed

by the Yugambeh people who told their story through

their beautiful aboriginal music and dance. It was a fabulous

conference, great venue, good food and I had lots of

conversations with dedicated, passionate and interesting

people!

What were some of the key learnings from the Conference?

Primarily the conference was focused on public and

academic libraries, whereas I work in the special library

sector. However, the issues of changes to copyright, being

relevant to our communities and the importance of

information literacy are the same problems that all libraries

are facing.

How will you apply those learnings to the context back here

in New Zealand?

As a result of attending and presenting at APLIC 18, I learnt

of new ways of how I can collaborate and advocate for my

11


diverse library community. I felt that I wasn’t alone and in the

words of Lucy Bloom you sometimes have to take risks!

What do you enjoy about running the library at Burwood?

I have been running the Allan Bean Centre Library for 16

years and have seen many changes in that time. When I

first set up the library; patients and families would regularly

visit to use the computers for email, study and work etc.

now patients arrive in the spinal unit with their own smart

phones and tablets! The ABC Library was demolished in

2015 and I have had to adapt to a new situation whilst still

providing a library service for patients, their whanau and

staff. This has involved thinking outside the box, as well as

resilience.

I love my job because it is more than just about books

on shelves. It is about the human interaction, finding the

information, carrying out research, and anticipating and

responding to the needs of clients.

For the uninitiated, what sort of resources are available at

the Allan Bean Centre Library?

The Library has a comprehensive collection of disability

and rehabilitation resources including spinal cord injury,

brain injury as well as other topics. We also have our own

range of publications and multimedia which you can access

through our Shop page: https://nzspinaltrust.org.nz/shop/

Available are laptops, free internet, printer, books, including

magazines/journals, DVDs, talking books, etc.

Support programmes include computer training, literacy

support and research. Some assistive technology is also

available.

For free membership to the ABC Library and to receive a

monthly new book list please complete this form: https://

nzspinaltrust.org.nz/resources/abc-library/registration-form/

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12


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

THE SPINAL CORD INJURY PAIN BOOK BY PHILIP SIDDALL, REBECCA MCCABE, ROBIN

MURRAY, KATHRYN NICHOLSON PERRY AND LYNDALL KATTE, 2018.

One in five people experience chronic pain but for those with spinal cord injury, ongoing pain affects

as many as two out of three people and many regard dealing with pain as one of the most difficult

consequences of their injury. The Spinal Cord Injury Pain Book is unique in providing the latest information

on how pain works as well as addressing the specific pain challenges for people with spinal cord injury. Its

practical ‘toolbox’ offers the best possible answers to pain ranging from medication and new technology

through to skills such as exercise, distraction, relaxation and meditation.

THE PAIN BOOK: FINDING HOPE WHEN IT HURTS BY PHILIP SIDDALL, REBECCA MCCABE AND DR

ROBIN MURRAY, 2014.

The Pain Book helps people face pain by using plain language to explain the source and types of pain, how the body

and mind respond and the kinds of treatments available. It also helps people find hope by giving practical steps

to reduce pain and address the physical, psychological and spiritual impact of pain – complete with illustrations,

techniques and exercises.

THE RESILIENT FARMER: WEATHERING THE CHALLENGES OF LIFE AND THE LAND BY

DOUG AVERY, 2017.

The South Island farmer suffered terribly during eight years of drought. His farm was depleted and so was he.

Although he didn’t realise it at the time, Doug had severe depression. His story, he says, is common to many in

farming who soldier on in isolation, slipping further and further into debt and desperation.

The Resilient Farmer is Doug’s powerful story of getting life back on track - for him, his family and livelihood. It’s also

an incredible tale of Kiwi can-do and how one man overcame heart breaking adversity to live a fruitful life and help

others.

THE IREST PROGRAM FOR HEALING PTSD: A PROVEN EFFECTIVE APPROACH TO USING YOGA NIDRA

MEDITATION & DEEP RELAXATION TECHNIQUES TO OVERCOME TRAUMA BY RICHARD C. MILLER, 2015.

The iRest Program for Healing PTSD, developed by clinical psychologist and yogic scholar Richard C. Miller offers

an innovative and proven-effective ten-step yoga program for treating post-traumatic stress disorder (PTSD). The

deep relaxation meditations in this book will help people to overcome the common symptoms of PTSD, such as

anxiety, insomnia, and depression, and maintain emotional stability so that they can return to living a full, meaningful

life.

13


JOURNALS / MAGAZINES

Dynamics of Human Health (journalofhealth.co.nz) Vol. 5 no. 3 September 2018

Topics in Spinal Cord Injury Rehabilitatioin Vol. 24 no. 1 Winter 2018

Forward Magazine Issue 147 October 2018

Nadia: NZ lifestyle magazine Issue 13 Oct/Nov 2018

New Mobility for active wheelchair users Issue 300 September 2018

Sports n’ Spokes Magazine for wheelchair sports Vol. 44 no. 5 September 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

CHRISTMAS OPENING HOURS 2018

The Library will be closed from Friday 21 December - Wednesday 3 January 2019.

Wishing all our members a very happy Christmas and New Year!

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14


The Ministers in a Wheelchair for a day was

met with huge media interest and a divided

response from the SCI community.

WHEELCHAIR FUN RAISES FUNDS FOR

SPINAL INJURY By Eddy Bramley

Weekend shoppers had a fun chance to experience the challenges of

life in a wheelchair on Saturday 8 September.

The New Zealand Spinal Trust and The Palms Shopping Centre

partnered to open The Wheelchair Challenge – a fun obstacle course

that gave shoppers an insight in to the everyday difficulties of being in

a wheelchair.

The challenge was the main event of the New Zealand Spinal Trust’s

second annual appeal which began on World Spinal Cord Injury Day

on 5 September.

New Zealand Spinal Trust information and design service manager

Bernadette Cassidy said the goal was to increase awareness and help

people understand the challenges that people living with spinal cord

injuries face.

“The idea is to take it kind of mainstream in somewhere like a

shopping mall where people can do something fun but at the same

time realise that doing things in a wheelchair is not so easy and kind of

put them in the shoes of someone in a wheelchair,” said Bernadette.

The theme of the appeal was ‘Relieve The Pressure’ which signifies the

immense physical and mental pressure individuals and their families can

face when affected by a spinal cord injury.

Three New Zealanders are affected by a spinal cord injury every week

and the aim of the New Zealand Spinal Trust is to provide physical,

mental and social support.

One of the trust’s key support programmes is vocational rehabilitation

which helps people who have recently sustained spinal cord injury get

back to work. Before the programme was in place only 12.5 percent

of people went back to work after suffering an injury – that figure has

now grown to 65 percent.

Another popular event during the appeal week was ‘Celebrities in

Wheelchairs’ where health ministers Iain Lees-Galloway and Carmel

Sepuloni, Canterbury District Health Board chief executive officer

David Meates all attended meetings in a wheelchair.

New Zealand Spinal Trust community and marketing manager Mike

Brown, who has a spinal cord injury himself, said such important

members of society experiencing a day in a wheelchair could only be

positive for the development of support for people living with spinal

cord injuries.

“It’s a great step in the right direction to

making people understand and to think

about the design of buildings to improve the

lifestyles of people in wheelchairs.”

“The feedback we got was that they wouldn’t have normally

understood the struggles of using a wheelchair everyday and so I think

it’s a great step in the right direction to making people understand

and to think about the design of buildings to improve the lifestyles of

people in wheelchairs,” said Mike.

“They are great decision-makers in our country and it was awesome

to have them experience a day in a chair and it was quite a profound

experience for them.”

New Zealand Spinal Trust appeal week was a great success and also

included a Wheelchair Challenge at the University of Canterbury.

15


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16

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KNOW YOUR RIGHTS

with John Miller Law

WHAT DOES THE ACC ACT SAY ABOUT

REIMBURSEMENT OF EXPENSES RELATING TO

INJURY AND THE PROCESS TO FOLLOW? E.G. CAN

PRESCRIPTIONS AND OTHER SMALL LIVING AIDS

SUCH AS PUSH GLOVES AND MODIFIED CLOTHING BE

REIMBURSED?

As long as you have cover for the injury for which the

prescription medicine or living aids are intended to treat, ACC

should come to the party. As set out in schedule 1 of the Act,

ACC will pay for treatment that is necessary, appropriate and

of the type usually provided. ACC won’t pay for treatments or

services that are (a) not related to the covered injury, (b) for a

pre-existing or underlying medical condition or injury that’s not

a result of the covered injury, (c) given outside of New Zealand,

or (d) given to you by a provider who isn’t registered or licensed.

A request for living aids might not be met with much enthusiasm

from ACC, but it is certainly worth getting your treatment

provider to request these items.

WHAT DOES ACC COVER FOR CHILDCARE SUPPORT?

ACC can fund the childcare for an injured claimant. However,

when and how many hours of childcare that ACC will fund is

determined on a case-by-case basis. To ascertain this, ACC look at

factors such as:

• the number of children that will require child care;

• the extent to which other household members can

reasonably be expected to provide child care;

• Avoidance of substantial disruption to the employment or

other activities of the household family members.

DO ACC CLIENTS HAVE A RIGHT TO CHOOSE WHERE

THEY GO FOR THEIR INJURY RELATED HEALTHCARE

APPOINTMENTS? CAN THEY ASK TO HAVE TRAVEL

AND COSTS COVERED FOR APPOINTMENTS AWAY

FROM THEIR HOME OR DO THEY HAVE TO SEE THE

SPECIALISTS IN THEIR AREA?

When ACC requires an assessment to determine cover or

entitlements, they will arrange it with a suitable provider. It is

possible to request a choice from a list of suitable assessors.

Where possible (assuming the choice does not involve

significant delay), ACC will usually accommodate a claimant’s

choice. Assessors will need to have a contract with ACC. An

unreasonable failure to attend appointments organised by ACC

can result in suspension of entitlements for non-compliance.

There is more of a choice when it comes to treatment

related appointments, e.g. with a GP (General Practitioner),

physiotherapist or counsellor. ACC can assist (up to a regulated

amount) with transport costs for appointments to the nearest

suitable provider. If there is no suitable provider in your area

and you have to travel a long way for treatment or rehabilitation

ACC may be able to assist with travel costs, such as flights and

accommodation. It is best to discuss transport and choice of

provider with your Case Manager in the first instance.

WHY ISN’T HELP FOR GARDENING AND HOME

MAINTENANCE, WHICH AN ACC CLIENT WOULD

HAVE PREVIOUSLY DONE, COVERED?

The provision of external maintenance as home help, such as

lawn mowing and hedge trimming in respect to the home of the

claimant, is not a “domestic activity” as defined by the ACC Act.

ACC therefore do not cover this. Several District Court decisions

have confirmed this.

ACC HAVE SUPPLIED ME WITH A LIST OF VEHICLES

THEY WILL FUND. HOW DO I GO ABOUT GETTING A

VEHICLE OUTSIDE THEIR LIST?

This question is tricky without knowing more information. But,

generally speaking, ACC will not fund a specific vehicle unless

there is evidence from an appropriately qualified transport

assessor which supports that the claimant has an injury-related

need for that type of vehicle.

WHAT DOES THE ACT SAY ABOUT ACC FUNDING

REPAIRS AND MAINTENANCE OF ADAPTED

EQUIPMENT, FOR EXAMPLE VEHICLE ADAPTIONS?

Clause 22(2)(b) of Schedule 1 of the Act states that ACC is not

required to contribute to the costs of maintenance or repair of

any vehicle or modification to a vehicle. This includes registration,

licensing fees, insurance, or other running costs.

Note that ACC does have some discretion though. It is always

worth asking to see if ACC will help contribute to the costs of

any repairs or maintenance, especially if it is necessary to maintain

independence.

17


KALEIDOSCOPE

AMY GLASSFORD

Amy says that SCI was harder on her family than her because

she didn’t know any different.

18

Graduating was a surreal

experience for Amy.

If you look up resilience in the Oxford Dictionary, it says: “The capacity to

recover quickly from difficulties; toughness”. It goes on further to outline

that a person who is resilient “shows the process of adapting well in the

face of adversity, trauma, tragedy, threats or significant sources of stress”. It

doesn’t have an example, but a photo of Amy Glassford’s face would not

be out of place.

The down-to-earth Kiwi, who sustained a spinal cord impairment (SCI)

at a very young age, has lived a life of overcoming adversity, trauma and

tragedy. She has never given up.

Amy can’t remember the day she sustained an SCI. The 35-year-old grew

up on a farm in Central Otago and she was three years old when her

family went to the neighbours for a visit.

Their house was on the side of a hill when it was time to leave, Amy was

in the passenger seat. She lost her balance and fell out of the truck while

her Dad was backing out. He didn’t notice that she had gone and he ran

over his daughter.

“I don’t remember much from that time other than being in a plane flown

between hospitals and being really annoyed because I was strapped down

on a bed and couldn’t see out the window,” said Amy of the fateful day.

“The other thing I remember is seeing a moon-hopper that kids bounce

around on in a cupboard. I didn’t feel sadness or any other emotion other

than matter-of-factly thinking I don’t play with that anymore.”

Amy had fractured her T4-5 vertebrae. Life would never be the same

again, but as a three-year-old she knew no different.

“If anything it was my parents who had the hardest time because they had

insight about what my life would be like from then on. Kids adapt quickly

so by all accounts I just accepted it and moved on.”

Amy’s Mum was a nurse so she got home from the spinal unit ahead of

time. “That’s not to say life was easy. Everyone had poor-wee-me days.

Like I say I got lucky with my family.”

“I was incredibly lucky with the family and community I got when I had my

accident because I was never treated any differently from my brothers

or the other kids I grew up with,” said Amy, who is the youngest of four

siblings with two older brothers and an older sister.

“I also never saw my disability as a reason why I couldn’t do something.

I have memories of taking my motorbike to school camps and driving it

through rivers. I think about how I grew up and am amazed that when my

brothers went to boarding school the thought never entered my mind

that I wouldn’t follow them. I understand now the planning that would

have gone into making that happen but never considered it wouldn’t

happen at the time.”

Fast forward the clock to 2010 and Amy still had that same resolve. After

being made redundant from her data entry job at Fulton Hogan, she met

Melissa Kelly, NZ Manager of the New Zealand Spinal Trust Kaleidoscope

programme.

Amy always had ambition, dreams and plenty of drive. Mel helped

channel that. She spent time with her establishing a career pathway and

supporting Amy in making decisions about her future. Mel also educated

her on the world of work.

“I had been talking about becoming a social worker for about the last 10

years and after the September earthquake I thought it was now or never,”

remembered Amy.

Mel and Amy established a foundation that would enable her to make

decisions moving forward as she expressed that she wanted a career,

rather than a job.


“Amy wanted to research a number of different industries, however from

the outset showed an interest in Social Work and I do recall when we

were researching the pathway, she was noticeably passionate,” said Mel.

Amy had always thought being a social worker would be a good way

to use the experiences she had throughout her life to help others. In

2011, she started studying to be a Social Worker at the University of

Canterbury and was “incredibly nervous”.

But those nerves quickly faded. Soon after her study had commenced

Christchurch was rocked by the earthquakes of February 2011 which

changed the course of the city’s history.

“The first earthquake in September was terrifying as we lost power

pretty much straight away so I couldn’t see anything. I was also living alone

at that point.”

The earthquakes also made studying at university a much bigger challenge.

The students started the year with online lectures and tutorials. Amy

remembers that made the learning process in her first year of uni that

much harder as they couldn’t meet with lecturers to ask questions.

“We had lectures in tents as a lot of the buildings were unsafe to occupy. It

also meant that I had to be escorted from the time I entered campus until

the time I left for safety reasons,” she said. “I didn’t know anyone else on

the course at this point to talk to or ask for help.”

Amy found a way to get through and at the end of her time at the

University of Canterbury, the feeling of graduating in 2014 was hard to

describe.

“Graduating was definitely a surreal experience because it was hard to

believe that study had finished and I had achieved my goal,” she said.

“Don’t let your disability hold you back.”

Mel was tremendously proud of Amy graduating – more so given the

challenges she had overcome and that she had been part of her journey

from the outset.

“Amy is a woman who has always had a positive attitude and smile on her

face,” said Mel. “There is a saying that attitude equals altitude and Amy

is living this. It is a very rewarding part of our team’s work to see people

achieve their goals and even after doing this work for 12 years, it never

lessens. Watching Amy work through her hurdles over the years, without

losing sight of her goal to become a Social Worker has impressed me, but

more so I am thrilled for her.”

Amy got her first role with the CCS Disability Action as a Service

Coordinator in the family and youth team supporting parents who have a

child with a disability.

“This role was a challenge because even though I had a spinal cord injury

from a young age I had never really been immersed in the disabled world,”

said Amy. “During this role I learnt a lot about being in the disabled world

from other disabled people.”

In 2018 Amy started a new job as a Social Worker at Christchurch Public

Hospital, supporting multiple groups.

“One of the reasons I really enjoy this role is because of the people

that I work with and the courage of the patients. I love the challenge of

supporting a diverse group of people as I am always learning and even if

two patients are from the same culture they can be completely different.”

Amy said the Kaleidoscope team has been hugely influential for her on

her journey.

“Mel has been incredibly helpful,” she said. “She was like an aunt and

uncle of mine who believed that I could achieve my goal of studying and

becoming a social worker when I wasn’t convinced.”

Mel said by taking on new challenges, and investing in her learning, Amy

has continued to grow professionally and personally.

“Amy has grown in confidence, self-management and her ability to identify

where she wants to go and map it out and achieve that.”

Amy is now living her dream job. She has sound advice for others who

have sustained an SCI and are nervous about getting back into the

workforce.

“Don’t let your disability hold you back. I know that might sound odd in

terms of physical barriers but from my experience is that there is often a

solution or a go around you just have to take the time to find it,” she said.

“I didn’t see my disability as a barrier to doing anything. I recently did a

sky dive for charity. I jumped out of a plane on 24 November for cancer.

When I was younger I would do things like this including rafting down a

river. I usually waited and told everyone after I done it because I guessed

it’s easier to ask for forgiveness than permission. Unfortunately in this case

I am raising money so I had to tell everyone what I was doing so they

would donate.”

After what she has overcome, jumping out of a plane will seem

straightforward. It says plenty about her resilience and nature that she is

pushing herself out of her comfort zone again to help people.

Q&A

Melissa Kelly, NZ Manager, Kaleidoscope

Amy had an ultimate goal to become a Social Worker, how important is

to have an end goal to work towards?

That is very dependent on the individual, some people are incredibly goal

orientated and this sets them up powerfully to achieve. Others might

have flexible end goals and as they learn more about themselves, their

pathway and steps become more apparent. At Kaleidoscope we celebrate

the steps on the way to the identified goals, which is important and builds

confidence, reinforces the possibilities and increases motivation; one way

to normalise SCI can be work.

How did you help Amy secure employment?

Together we worked through the world of work and set a solid

foundation of knowledge to empower her to own the process of securing

a job. What that involved was education on how to job search, identifying

and expanding her networks, interview and application support and

targeting the right roles and organisations that matched her values, skills

and training. We met weekly to track progress, discuss opportunities and

ensure that Amy had the tools she needed to be successful in gaining

employment that would be sustainable and meet her long term objectives

in this case; which were reasonably specific. I was also a professional

referee in Amy’s application to the Social Workers Registration Board.

What advice do you offer to others looking to get back into employment?

Essentially feel the fear and do it anyway, as the end result is such a reward.

Rewards such as expanding your social networks, utilising and developing

new skills, decreased pain, improved health and wellness, financial benefit

or even being a role model in your family. Further to this, treat your job

search like a part-time job and set goals and daily tasks.

1. Life skills are work skills, too - Employers rate these ‘soft’ skills

(initiative, adaptability, and organisation) very highly. Ask family and

friends what they think you’ve got to offer an employer if you aren’t

sure.

2. Don’t go it alone – You might find the whole process much easier if

you seek support from Kaleidoscope, friends and family.

3. Get your CV up to scratch.

4. Make a fresh start - If you weren’t happy with what you were doing

before, treat this as a fresh start and opportunity. Think long and

hard and carry out plenty of research before making a commitment

to a new career path. Ask yourself (and family) what job can I do?

5. Get back into the work habit - Get used to having to be somewhere

and working with other people again. Voluntary work, whether it’s

helping out at a school, charity or church, will get you back in the

habit of being at a certain place at a certain time.

6. Get networking - You may think you don’t know anyone useful but

put the word out to family, friends, ex-colleagues and acquaintances

– you could be surprised by the doors that open.

7. Believe in yourself!!

19


NEW ZEALAND SPINAL TRUST

WELCOME BACKPACKS

Patient Graham Kingswell

receives his backpack from

Peer and Family Support

Manager Debra Edmonds.

The latest initiative from the New Zealand Spinal was

launched in September this year.

This has been a work in progress for twelve months with

the initial idea coming from the Library team. Funding

was secured late 2017 from the Harcourts Foundation

to design and purchase the backpacks.

The complimentary Welcome Backpacks were

distributed to patients in the Burwood Spinal Unit.

The packs contain a drink bottle, useful info and a few

goodies to help make easier the rehabilitation journey for

new patients and their families. Every new patient that

goes through the unit will receive one. The back packs

will become available in the Auckland Spinal Unit before

the end of the year.

Key features

› Off-road handbike

› Oversize tires for various terrains

› 20 cm ground clearance

› 250 W motor, with up to 60 km range

› Shimano gear system

› Disc brakes for front wheel and rear

wheels

› Weight from approx. 18 kg (without motor)

› Max. user weight 140 kg

› Danish design and manufacture

› Speed up to 26 km/h

Wolturnus Fatbike

Ultimate outdoor actions, regardless of weather

and terrain

20

www.euromedical.co.nz | 0800 33 88 77


THE BAIL BULLETIN

HAPPY END OF YEAR GREETINGS FROM ALL OF THE BAIL TEAM!

As the end of the year draws close, the BAIL team can reflect on a

busy and productive 2018.

In September 2018, the BAIL team of Dr Jo Nunnerley, Dr Johnny

Bourke and Anne Sinnott attended the ISCoS annual conference

in Sydney and presented a workshop, an oral presentation and

six posters between them. Johnny Bourke collaborated with John

Chernesky from the Rick Hansen Institute, Heather Gainforth

from the University of British Columbia, and John Shepherd from

the University of Toronto to present a workshop titled ‘Better

Together: Consumer engagement in SCI research’ which was a

fantastic opportunity to promote BAIL’s philosophy of including

people with spinal cord injury in all stages of the research process.

In September we were visited by John Chernesky who lives

with C7 tetraplegia and is the consumer lead at the Rick Hansen

Institute in Canada. The Rick Hansen Institute focuses on improving

care and research for people living with spinal cord injury. John

has been working with the BAIL team to develop better ways to

include people with spinal cord injury (and other impairments) to

be easily included in the research process. While in Christchurch,

John gave a number of talks and presentations which were well

attended by people living with spinal cord injury, researchers

and clinicians. John shared various tools for conducting rigorous

research that incorporates consumer engagement into all steps

of the process. Information like this helps BAIL to ensure people

with the lived experience of disability are at the centre of all our

research and projects.

The BAIL team have also presented the results of our research at

a number of conferences in New Zealand and Australia this year.

This has led to opportunities to connect with people researching

spinal cord injury from all around the world. This helps to advance

research more quickly and develop more ways of enabling people

spinal cord injury and their families live productive healthy lives.

BAIL has also continued to provide tertiary education throughout

2018 by teaching an independent living course at Ara (Independent

Living ASIL700) and a paper (147.317 Disability in Society) at

Massey University. Having the chance to teach students about the

importance of equal opportunities for people living with disability

and conducting consumer focused research is a privilege for the

BAIL team.

Resources and videos of the presentations and workshops

conducted by BAIL throughout 2018 are posted on our website

so please check-in and also make sure to keep up-to-date on

BAIL’s activities www.burwood.org.nz Also, please contact our

operations manager Kathy Duncan if you wish to be added to our

newsletter subscription Kathy.Duncan@burwood.org.nz

The year ahead is also shaping up to be another busy year for

everyone at BAIL and we wish everybody a safe and happy holiday

season ahead!

21


“Gripper’s Race Day”

By Hans Wouters

Gripper &

Andre Neill

Danielle Johnson

rides Two Thirty

In April 2015 we introduced you to a new NZ

Spinal Trust Patron Trevor Harrison. The first time

I met him he said: “Call me Gripper, everyone

calls me that,” and sure enough I have never heard

anyone use “Gripper’s” real name.

“Gripper”, a former jockey, is another awesome

example of someone whose spinal cord injury was

more a speed bump in their path rather than a wall

to stop them. His rehabilitation has been a long and

tough one since his C3-4 incomplete injury in 2002,

however his dogged determination and hard work

has seen him bounce back into a rich and rewarding

life.

For the last nine years he has organised a Charity

Race Day for us at Pukekohe Park which we

affectionately call “Gripper’s Race Day”. In total

this event has raised just over $95,000 for our

work. This is a tremendous result and testimony to

the many friendships he has in his beloved racing

industry. “Gripper” will do anything to raise funds

for us and his latest crazy idea has been to have one

of NZ’s leading jockeys Cameron Lammas have his

beard shaved off in front of the main stand by one

of the Counties Axemen - with his Axe!

His idea to have Jockeys race 100m on

Moonhoppers has been a fabulous addition

to recent events and the jockeys really enjoy

themselves. Many of the jockeys that Gripper has

along are internationally famous and household

names in the racing fraternity. One standout

character on the day who creates plenty of energy

and entertainment for the public and guests is the

MC and Auctioneer Andre Neill. Andre adds a

whole other dimension of fun to the day. This year’s

Free Wheelin’ Frenzy Trophy pitting the Wheel

Blacks against some Kiwi legends was won for a

second time by Maia Amai of the Wheel Blacks.

We are very grateful to the many individuals

and sponsors that “Gripper” wrangles together

to raise funds for us, including Pukekohe Park,

Healthvision, SsangYong, Collett Racing Stables,

Splice Construction and The Wheel Blacks.

“Gripper” takes special interest in any new spinal

injuries coming from the racing industry and he

is often seen around the Auckland Spinal Rehab

Unit supporting and encouraging people. We are

extremely grateful to our hard working Patron

“Gripper” Harrison and the crew he assembles

around him for this wonderful annual event.

22


Cameron Lammas

having his beard

shaved off

Free Wheelin Frenzy Field

23


ALTUS TRUST

By Brett Ladbrook,

NZST Family & Peer Network Coordinator

In August this year I was given the opportunity to head over to

Samoa with the Altus Resource Trust. The role was as a Volunteer

Wheelchair Technician and I had the chance to teach some of the

locals basic maintenance.

The Altus Resource Trust works with organisations in the Pacific

Islands who provide services for children and adults with disabilities.

This year on the trip to Samoa the team included physiotherapists,

occupational therapists, a wound-care nurse specialist, a bladder

and bowel nurse specialist, seating specialist, wheelchair technician

and builders. It was all documented on video for the Altus Trust

(at the time of writing; we don’t know when the video will be

made available). All this involved seeing people with spinal cord

impairment (SCI’s), training field workers and health professionals.

I had heard what the Altus Resource Trust had been doing and

seeing it first hand, I was blown away by the impact they have had

on people with SCI’s in Samoa. The health of people with SCI’s

used to be poor with limited resources and a lack of knowledge in

how to care for themselves.

Complications from skin issues or pressure injuries, bladder issues,

infections and blocked catheters were some of the main problems

affecting the health and well-being of people with SCI.

Lack of access to Fales, toilets and showers were some of the

things that hit me when I visited a few of the families in the

community. Imagine not having a suitable ramp for you to be able

to get out of the house or in this case the Fale, not being able to

take a shower or use a toilet because it was not accessible to you.

I saw what the Altus Trust had done first-hand with building some

well put together ramps and accessible shower units. I was told it

would be full on. And from Monday to Thursday it was. I also knew

it would be hot and everyday it hit around 30 degrees Celsius.

Our clinic was held at Fletcher Construction’s base in Apia. The

initial client check-up and wheelchair maintenance was done under

a large carport, which worked out great as it was sheltered, open

and we had a breeze coming through. The medical check-ups

were done in an air-conditioned modified container office.

It was really rewarding to be able to use the skills I had learnt over

the years in the wheelchair industry and also the new skills I have

as a Peer Support worker with the NZ Spinal Trust.

One of the things I was asked to do was go over with the locals

how to repair their chairs so that when we left they had some

skills of their own to carry out basic maintenance. Showing the

locals how and what to look for, techniques on repairing and how

to adapt or use what you have on hand to set up a chair. These

people have it tough, but the willingness to learn and to adapt is

amazing. They are very resourceful people.

Being a techie my focus was on what people were using for

mobility and some of the chairs were grim to say the least. The

biggest issue I saw was the lack of parts and the challenges in being

able to get out to get the chairs repaired.

We were robbing unused chairs for parts and using a lot of good

second-hand parts as well as a lot of parts I had bought from local

importers or manufacturers. I know over here in New Zealand

some of the parts would have been thrown out when the chairs

are serviced, but they can be used or disassembled for spares. I

had to think outside the box for a lot of set-ups or repairs with

having limited fittings, limited parts and limited tools. It was a

challenge but extremely rewarding!

On the second day I worked on a wheelchair which was similar

to mine. It is a basic chair, not a lot of parts in it, but I spent over

two hours on it. The chair came in with a broken front castor that

was rather unsuccessfully glued together. The front castor mount

bearings were seized and when I went to knock them out they

disintegrated. After lots of penetrating lube, a punch and hammer,

I eventually got out the bearing shells. The front forks on the chair

had been pulled apart and reassembled incorrectly at some stage.

These had been wearing out the frame housings. This added to the

issues of getting the bearings out as it damaged the housings. The

studs that held them on were pretty rusted and worn as well. It

was off to the parts shed, which was a wee distance from the clinic

area over rough chunky stones, to rob some parts off a donor

chair. I put the front end together, removed the cushion to find the

24


Brett Ladbrook was blown

away by the impact the

Altus Trust are having on

people with SCIs in Samoa.

Brett Ladbrook said it was really rewarding

to be able to use the skills he had learnt over

the years in the wheelchair industry and

also the new skills he has acquired as a Peer

Support worker with the NZ Spinal Trust.

seat sling-bars were broken. I went back to the parts shed again

and the donor chair came in handy with new sling-bars.

This chair had the same amount of work done on it last year. Not

the person’s fault, but due to circumstances repairs were hard to

get sorted. We absolutely maximised everything we could out of

the wheelchairs and parts we had taken over.

During the week, part of the team headed over to Savaii, the

other large island in Samoa for a clinic. They had a successful time

meeting people and helping them out with the medical check-ups

and wheelchairs repairs.

The same was done the next day when I got to go with a team

over to the South East of the island and visit some people in

some of the small villages. The trip went through some beautiful

countryside. The coastal communities were devastated by an

earthquake that created a tsunami in 2009, with significant damage

and loss of life. Nine years on and the only evidence I saw was

a huge landslip that went out into the sea. On the road back to

Apia, in the dark, we came across wandering pigs, dogs, horses and

people.

The last couple of days I was there were spent trying to relax at a

resort. Struggling with doing nothing, I chucked my freewheel on

and went for a 6km push down the road from the resort. It was

great fun. I always got a friendly “Hi” and sometimes the odd look

and question from the kids and locals. I guess seeing someone out

and about in a chair along the main road isn’t a common scene in

Samoa.

People do get out but nowhere near as much as what happens

here in New Zealand. Life after an injury here, is relatively normal

with access to transport, footpaths and shops. So from a personal

perspective we are so lucky with what we have at our disposal

here in NZ with our own Insurance scheme and assistance from

ACC and the Ministry of Health.

There were a number of people who made my trip

to Samoa possible. I would like to give a shout out to

the following businesses and people:

• Marleen Wholesale for a huge amount of discounted and free

tyres tubes and related items

• Melrose Kiwi Concept Chairs for support with parts and

frames so I could sort out a few chairs before I left

• To all those that supplied chairs and supplies over the year

that were sent over in the containers

• Also the people that helped sponsor me to get over there

and purchase some much needed parts through a Givealittle

page. Without that help I would have found it extremely

difficult. I cannot express enough how much I appreciated

support in this

If you would like to help please visit the Altus Resource Trust web

page where you can make a donation, become a sponsor, donate

equipment and if you are in Auckland, donate time to help pack

equipment from the warehouse to the shipping agents.

Also if you have any disability equipment that you are not using feel

free to contact Altus or myself and I can forward on the details.

For more information: https://www.altusresourcetrust.nz/

To contact Brett Ladbrook email: brettl@nzspinaltrust.org.nz

25


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26

www.mortonperry.co.nz


Farewell to Dr. Lincoln James Leonard Jansz

26 April 1964 – 15 September 2018.

The Burwood Spinal Unit staff, family and friends said a sad goodbye

to beloved physician and colleague, Lincoln Jansz on 22 September

2018, at the John Rhind Chapel in Christchurch.

In August 2017, Lincoln, a lifelong non-smoker was diagnosed with

advanced stage 4 lung cancer. The news was devastating to his

family, friends and colleagues.

However, Lincoln was determined to fight the illness and he fought

for as much extra time as he could to spend with his family.

Lincoln was well-known and respected at the Burwood Spinal

Unit. He spent several years and many long hours studying for the

Fellowship of the Australasian Faculty of Rehabilitation Medicine

(FAFRM). He achieved this difficult goal in 2017 which was in no

small part a consequence of his dogged determination to achieve

what he had set out to do.

He was a humble man, who always put his patients first and he

cared very deeply about them.

Lincoln was well-loved and respected by everyone at Burwood.

He will be sorely missed by friends and colleagues in the Burwood

Spinal Unit and the Burwood community.

Rest in peace, Lincoln.

HAWK

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2018 was a big year for Ian McDonald as he was awarded a

Winston Churchill Fellowship to research baseball communication

in the United States. Here he is at Chase Field, home of the

Arizona Diamondbacks.

Q&A

Life in a wheelchair and overcoming his

disability in the workplace.

Ian McDonald is a firm believer that you make your own luck in life. The 54-year-old from Auckland (born

and bred in Wellington) has a congenital condition called Arthrogryposis, which affects the function in his

left leg and right arm, but has never made his disability a reason why he cannot achieve. For the past five

years he has worked for Baseball NZ (the past two years paid and three years before that as a volunteer)

as their Communications Advisor. We caught up with Ian and asked him about life in a wheelchair and

overcoming his disability in the workplace.

Tell me what a typical day is like at Baseball NZ.

As I work from home, unless I’ve got a meeting to go to, I get up, shower, breakfast then usually get on with

work in my home office, clearing emails, writing media releases, preparing funding applications, keeping

website and social media up to date with new stories, happenings etc. Depending on workload, usually

have baseball game playing in the background on TV (through Major League Baseball TV - MLB.TV), or if

I’ve cleared my workload, sit down and watch a game (doesn’t happen as often as I’d like to), then as the

day goes on get evening meal prepared (my wife works full-time in the city) and after dinner, wind down

with some tele and off to bed only to do it all again the next day. As my job entails some weekend work

(what sports don’t?), I usually try and stay away from phone or laptop over the weekend as much as I can

otherwise you can end up working seven-days a week.

What have been some of your highlights from working for Baseball NZ?

The biggest highlights I’ve had so far with Baseball NZ are meeting a host of current and former Major

League Baseball players, coaches and administrators and keeping those personal relationships with them.

In 2016 I was Media Manager for the New Zealand Diamondblacks at the World Baseball Classic Qualifier

28


Q & A

AJ POUA

New Zealand’s first Personal

Trainer in a wheelchair

in Sydney, which you could say was a dream come true working

in a role such as that. 2018 was a huge year as in late 2017 I was

awarded a Winston Churchill Fellowship to research baseball

communication in the United States and I worked as an intern

at Major League Baseball in New York and with the Arizona

Diamondbacks in Phoenix.

You use a wheelchair, can you tell us your story?

I haven’t lost complete use of my legs, I can walk very short

distances around the house and out to my car, but use the

wheelchair for anything longer than a few metres. I have a

congenital condition called Arthrogryposis, which affects my left

leg and right arm. In December 2010 I had a full hip replacement

in my right (good) leg and suffered femoral nerve damage during

the operation, thus making my normally strong and only good

leg paralysed. It took me a full six months just to be able to stand

up on my own and another year before I could walk a few steps

without hanging on to a rail. In the years since, I have regained

some strength in the leg, but can only walk short distances and

now use a power wheelchair to get around. Eighteen months after

the operation, the Halberg Trust medically retired me as I was

unable to physically do the job I was employed to do (Disability

Sport Co-ordinator), despite having positions available in their

office that I could easily have done. In October 2012 I became

a volunteer with Baseball New Zealand and after three years

became a paid contractor to the organisation and am currently a

Communications Advisor in the organisation. ACC have provided

me with a car and a hoist for the wheelchair, giving me back my

independence.

How do you overcome the challenge of being in a wheelchair in

your role?

I try to look past challenges and see them as opportunities as now

I use the wheelchair, I can get around a lot easier and quicker than

I used to before my hip operation. Prior to the operation, I was

limited in how far I could walk without a rest (up to about 100m

or so) and since I’ve had a vehicle and chair hoist supplied to me by

ACC, I am totally independent and can go pretty much anywhere

I want to. Some fields can be a bit more of challenge to get to and

around, but I just get on with it and try and look at the positives

(hey, I’m outside watching and working on baseball, how can that

be seen as a challenge?).

How important is it to have an inclusive working environment

and a supportive boss?

The Baseball New Zealand CEO Ryan Flynn is unbelievably good

when it comes to supporting not only me, but the rest of the

staff. Not a lot of bosses would have given a disabled person an

opportunity to travel with an international sports team as their

Media Manager and to also give me the opportunity to travel to

the US this year. He has helped with connections to people within

baseball in the US to make my trip possible. I hold him and his

enthusiasm for the game of baseball in the highest regard.

How important is a can do attitude to achieving what you want

to in your career?

I try and be positive 100 percent of the time, some people say I’ve

had a rough deal, first with a disability, then with losing the use of

my strong leg, but I see this as just another opportunity to make a

positive out of a negative and just get on with it. Even as a child, my

parents treated me the same as my brother and sisters and not as

a disabled child and being brought up in that fashion has just made

me all the more determined to just get on with life and make the

most out of the opportunities that come your way.

What advice would you offer to others who are wheelchair users

and looking to get back into work?

Don’t sit back and feel sorry for yourself, prospective employees

will pick that up very quickly, it’s important to try and stay positive

and optimistic, that way others will see you trying to make the

most out of life and not sitting back and waiting for things to

happen. Make your own luck.

What advice would you offer to employers who have staff who

are wheelchair bound?

Give them a chance and try and look at the positive things a

prospective employee can bring to your organisation and look past

any possible barriers.

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

THE LION FOUNDATION

LOTTERY GRANTS BOARD

HARCOURTS

FOUNDATION

THE SOUTHERN TRUST

CANTERBURY DISTRICT

HEALTH BOARD

HEALTHVISION NZ

FOUNDATION NORTH

UMBRELLAR

PUKEKOHE PARK

COUNTIES RACING CLUB

AMP CAPITAL

WOO HOO

FREEDOM MOBILITY

HEALTHCARE

REHABILITIATION

COUNTIES MANUKAU

DISTRICT HEALTH BOARD

FreshChoice Parklands

SIR JOHN LOGAN

CAMPBELL

RESIDUARY ESTATE

ANZ STAFF

FOUNDATION

THE ELIZABETH

BALL CHARITABLE

TRUST

THE

REHABILITATION

WELFARE TRUST

THE AXEMENS

CLUB

(CHCH RUGBY)

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


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31


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32

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