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SPINAL NETWORK NEWS<br />

<strong>December</strong> <strong>2012</strong> Volume 15 No 3 ISSN 1175-4753<br />

Modified Kitchens<br />

Pain Mens Sheds Intimacy Great Barrier Experience


CONTENTS<br />

1 CEO Report<br />

2 Modify Your Kitchen<br />

EDITORIAL TEAM<br />

TRUDY MULLIGAN<br />

Hi, my name is Trudy Mulligan and I’m one of the design<br />

team at the NZ Spinal Trust. I’ve been a wheelchair user<br />

for around 15 years though my transition to full paraplegic<br />

took a decade. I studied at the Canterbury School of Fine<br />

Arts majoring in design. I have had my own design business<br />

for 16 years. I’m employed by the NZ Spinal Trust as design<br />

consultant and I thoroughly enjoy working as a member of<br />

the superb design team.<br />

6 Mr Bill Utley<br />

7 QEII Track<br />

8 Pain<br />

14 Mt John Observatory<br />

17 Maternal Instincts<br />

18 NZST Programmes<br />

22 The Samoan Spinal Network<br />

CLAIRE FREEMAN<br />

JOHN BOURKE<br />

Hi, my name is Claire Freeman and I am part of this fantastic<br />

team of fellow writers and researchers for the Network News.<br />

I am employed full time by the Canterbury District Health<br />

Board as a graphic designer, and I also work for the NZ Spinal<br />

Trust. I am finishing off my Masters in Health Science, Otago<br />

University and plan on pursuing more study. I enjoy thinking<br />

about long walks on the beach and am not an alcoholic but do<br />

like bloody marys without the tabasco sauce- cheers.<br />

Hello! After experiencing a C4/5 SCI in 2005, and spending<br />

several years in Nelson, I am currently based in Christchurch<br />

with my wife Corrin. Working with Paul and the team at the<br />

Spinal Network News is great, and I have found it to be a<br />

fantastic way to keep in touch with the various happenings in<br />

the New Zealand SCI community. I am currently completing a<br />

Post Grad Diploma in Rehabilitation through Otago University,<br />

and in <strong>2012</strong> I hope to complete a Masters thesis exploring<br />

issues facing those with high-level SCI following injury.<br />

CONTRIBUTING<br />

WRITERS<br />

Ben Lucas<br />

Bernadette Cassidy<br />

Cindy Allison<br />

Carolynn Day<br />

Trudy Mulligan<br />

Claire Freeman<br />

Debz Mitchell<br />

John Bourke<br />

Hi, my name is Bernadette Cassidy and I am delighted to be<br />

part of the Spinal Networks News Editorial Team. I have been<br />

with the New Zealand Spinal Trust as Library and Design Team<br />

Manager for nearly 10 years and have seen the organisation<br />

grow from strength to strength. I am passionate about the<br />

work we do at the Trust and how libraries can assist in reaching<br />

disadvantaged groups - having access to quality and timely<br />

information empowers people ‘to reshape their lives’ and assist<br />

BERNADETTE CASSIDY with reintegration back into their communities.<br />

SPINAL NETWORK NEWS is published by the NZ Spinal Trust<br />

Send your contributions to:<br />

The Editor SPINAL NETWORK NEWS<br />

c/- New Zealand Spinal Trust, Private Bag 4708, Christchurch 8140<br />

Tel: (03) 383 7540 , Fax: (03) 383 7500<br />

Email:<br />

Web: www.nzspinaltrust.org.nz<br />

DISCLAIMER:<br />

The views expressed in SPINAL NETWORK NEWS are those<br />

of its contributors. They do not necessarily represent the opinion<br />

of the members of the Editorial Committee or the policies of<br />

the New Zealand Spinal Trust.<br />

DESIGN & LAYOUT: Trudy Mulligan, Designer NZ Spinal Trust<br />

PRINTER: The Caxton Press


CEO Report<br />

Well, who can believe that <strong>2012</strong> is almost over and<br />

Christmas is just around the corner? Personally I have<br />

only just got used to putting <strong>2012</strong> instead of 2011…<br />

<strong>2012</strong> has been an eventful year for the Trust with a lot<br />

taking place throughout the year;<br />

In February we were given short notice to vacate the<br />

Allan Bean Centre (ABC), due to a couple of walls which<br />

were deemed unsafe, putting our Team at risk in the<br />

event of any future earthquake. I cannot speak highly<br />

enough of the Canterbury District Health Board (CDHB),<br />

and Burwood Hospital as we were quickly relocated<br />

within Burwood Hospital when space within CDHB<br />

was incredibly tight, especially admin space. With a little<br />

juggling around, we managed to move all that we needed<br />

and set up with no disruption to our services. After<br />

two months, we moved back into the ABC. Making the<br />

building safe was a direct expense to CDHB and they<br />

didn’t need to complete these repairs when there was<br />

so much else going on, so a huge thank you to all the<br />

management at Burwood Hospital and CDHB for doing<br />

this for us.<br />

In August of this year, we managed to gain access to the<br />

QEII Athletics Track, thanks to the Christchurch City<br />

Council. A team of us tore the track up and mounted<br />

100 samples onto board and more importantly, got some<br />

iconic pieces of the track relating to Dick Tayler who won<br />

the 10,000m event at the 1974 Commonwealth Games,<br />

as well as John Walker, one of NZ’s greatest runners. The<br />

pieces were auctioned on Trade Me in August which raised<br />

valuable funds for the Trust<br />

We were also the Official Charity for the recent<br />

Benchmark Homes Festival of Cycling – an iconic two<br />

day cycle event in Christchurch. We had a wheelchair<br />

race with celebrities as well as a handcycle event. Again,<br />

the exposure was invaluable as well as the fact that we<br />

managed to raise more funds for the Trust.<br />

Other fundraising events were the Christchurch Marathon<br />

and Kim Allan, who ran non-stop for 480km, raising funds<br />

for the Trust.<br />

Our Team here at the Trust continues to be highly<br />

dedicated and focused on the best outcomes for you as<br />

the end user. I am continually impressed by how our Team<br />

never need to be reminded that you as the end user are<br />

the most important person in relation to the Trust and<br />

the work we do.<br />

Funding has been tight in the not-for-profit sector and due<br />

to the fantastic legacy left by those who have gone before<br />

me, the Trust has positioned itself as a highly respected,<br />

quality and trusted organisation that provides services<br />

that are recognised as important in the Spinal Community.<br />

As a result of this, we have managed to not only keep<br />

functioning, but grow some of our services.<br />

2013 is just around the corner and we’re looking forward<br />

to another exciting year. I wish you all a safe and happy<br />

Christmas and look forward to the New Year and the<br />

opportunity and excitement that it brings.<br />

Ben Lucas<br />

The Mayor of Christchurch, Bob Parker wrote a book,<br />

‘Ripped Apart; a city in chaos’ which was released in<br />

November, with the launch being held here in the Allan<br />

Bean Centre Library. He is donating the royalties from<br />

the book to our Connecting People programme. At the<br />

time of printing, the amount isn’t available, but for the<br />

NZST to have national exposure was invaluable. Mayor<br />

Parker’s books are available in most bookshops as well as<br />

directly from the Trust.<br />

1


Modify<br />

your<br />

Kitchen?<br />

When my wife’s away and i have to fend for myself, I’m<br />

constantly reminded of how wheelchair-unfriendly our<br />

kitchen is. I can’t safely reach the back of the cook-top,<br />

I can’t get at the sink properly to wash up, i can’t reach<br />

some of the cupboards (including The one where the<br />

cook books are – which is probably a blessing anyway), I<br />

can’t get vital stuff from the back of the fridge – especially<br />

on the lower shelves. There’s got to be a better way!<br />

However, I have to admit that my wife uses the kitchen<br />

much more than I do which of course creates further<br />

problems, because the kitchen really has to suit both our<br />

needs. Bench heights, along with sink and cook-top heights<br />

would especially make problems for one or other of us.<br />

So I’ve been exploring the internet for ways in which<br />

kitchens could be made more useful for me, with a few<br />

additional thoughts on how we could make the space<br />

more suitable for both of us. First of all, what would I<br />

like?<br />

Most of all, I think, I’d like to be able to get my knees<br />

underneath the cook-top, so I can get much closer to pots<br />

and pans heating on there. It would also be a heck of a<br />

lot safer than trying to juggle things from a low, sideways<br />

position. The other thing that would be neat would be to<br />

get my knees right under the sink, so that I can properly<br />

reach in there to wash the dishes. It would be helpful, too,<br />

to be able to reach the stuff in the higher cupboards, and<br />

especially to be able to get at the food in the back of the<br />

bottom shelves of the fridge. Anything else while we’re<br />

about it? Well, yes, there is. Wouldn’t it be nice to be able<br />

to put food easily into – and take hot things out of - the<br />

oven without having to reach out round that great big<br />

downward-opening door? And maybe those benches are a<br />

little too high for comfort?<br />

So let’s see what Google can do for us. Well, if you live<br />

in Sweden, the USA or the UK and have some money,<br />

you could buy the perfect kitchen. YouTube gives several<br />

examples. I picked up a few good ideas there – side-opening<br />

oven doors, slide out cupboard shelves, lift-racks that lower<br />

shelves in higher cupboards down to my level, slide-out<br />

chopping board, height-adjustable benches, cook-tops and<br />

even sinks. Controls at the front of the cook top would be<br />

useful too – it reduces the chances of my sleeves catching in<br />

pot handles as i reach across above them.<br />

Of course there are drawbacks. If you’ve got knee space<br />

under the cook-top and under the sink, where, exactly,<br />

are you going to put the pots and pans that live under the<br />

cook-top and the scungy cleaning pads and horrid things<br />

that invariably live under the sink? Well, one good idea I<br />

2


came across was cupboards on casters that could, be<br />

moved out of those places. The under-sink plumbing<br />

might need to be rearranged for that to work, though. In<br />

addition, the sink itself might need to be a shallower one<br />

than usual.<br />

The only way in which the kitchen could be organised for<br />

people of two different heights would be to have cooktop,<br />

sink unit and perhaps benchtops to be adjustable for<br />

height. This could be done either by manual crank handles,<br />

or, as American kitchen designers tend to suggest, using<br />

push button electric motors.<br />

One thing I have to stress is, as i was told in my very early<br />

days in Burwood, that we’re all different. I’m a T3 para<br />

who buggered his left rotator cuff whilst doing a transfer<br />

8 years ago, so I’m now in a power chair. So I’ve been<br />

describing what would suit me. But some of the ideas I’ve<br />

suggested would suit many, but not all, others.<br />

Ian Popay<br />

Useful internet addresses for<br />

wheelchair kitchens<br />

Development of Kitchen Models for Wheelchair Users.<br />

http://www.idemployee.id.tue.nl/g.w.m.rauterberg/conferences/<br />

cd_donotopen/adc/final_paper/031.pdf.<br />

1,653 wheelchair accessible Kitchen Design Photos.<br />

http://www.houzz.com/photos/kitchen/wheelchair-accessible.<br />

Useful tips from the Canadian Paraplegic Association, at<br />

http://www.thespine.ca/articles/accessible_renovations/design_<br />

wheelchair_accessible_kitchen/<br />

Kitchen Design. From Independent Living, UK<br />

http://www.independentliving.co.uk/kitchen-design.html<br />

If you’ve just won Lotto, here’s a futurist kitchen design at<br />

http://www.universaldesignstyle.com/liberty-project-accessiblekitchen-by-whirlpool-latin-america/.<br />

See the amazing and innovative variations of the Sky-Lab<br />

Italian kitchen design<br />

http://www.snaidero.it/<br />

(two pictures to the left)<br />

3


In 2011, I finished my Masters thesis from Otago University<br />

Health Sciences Department, titled ‘Experiences of Intimacy<br />

and Relationship Maintenance in Acute Spinal Cord Injury<br />

Rehabilitation: An Interpretative Phenomenological Analysis’. It<br />

was a part time project I slipped in to my crazy life and although<br />

I was told it would be like trudging through setting concrete, I<br />

loved it. I found the whole process fascinating and learnt a great<br />

deal, both educationally and within myself. I found that during the<br />

interviews, I unwittingly confronted my own demons as feelings of<br />

grief and repressed trauma surfaced.<br />

In simple terms, the thesis was an exploration of the coupled<br />

perspective as they journey through the hospital directly after<br />

one of them has had a spinal cord injury. Couples talked<br />

about the problems they had with a loss of autonomy,<br />

feelings of intense grief and guilt, not being acknowledged<br />

as a couple, and all were curious about what the future<br />

would be like. Another interesting point all the couples<br />

made was that they felt closer to their partner as a result<br />

of the injury. They agreed open communication was vital<br />

to a healthy relationship, and I felt a real sense of teamwork<br />

between the partners.<br />

They spoke about a few health professionals at Burwood who<br />

had made their time in the spinal unit a lot easier. Relationship<br />

maintenance and intimacy was addressed by a<br />

Intimacy<br />

specialist nurse who all felt was fantastic and extremely helpful,<br />

however, couples also spoke about situations where they felt<br />

disrespected by health professionals and this caused both in<br />

the relationship a great deal of grief. A lack of privacy and<br />

space was a constant problem for couples who struggled<br />

with living with curtains for walls and no place to go to share<br />

intimate moments together.<br />

Since completing the thesis, I’ve been keen to educate as<br />

many people of (with?) my results. I was lucky enough to<br />

present recently at the Australia New Zealand Spinal Cord<br />

Society (ANZCoS) in Melbourne, helped by funding from the<br />

NZST and BAIL. The presentation went really well and the<br />

feedback I received was encouraging which made the trip very<br />

worthwhile. I also came back with pop-eye sized arm muscles<br />

as I discovered (and trudged around) Melbournes inner city<br />

hills.<br />

The last step in this journey is to write a handbook to help<br />

people with SCI and their families. Although the handbook<br />

‘Back on Track’ has been extremely well received, there<br />

is more of a focus towards medically related issues. The<br />

handbook I’m compiling will address many holistic issues that<br />

affect people such as relationship maintenance, intimacy issues<br />

and grief. It is hoped the book will be ready for print in a years<br />

time.<br />

Claire Freeman<br />

4


5


Where the Stairway to<br />

Heaven Begins<br />

by Trent Mabbett<br />

Inclusive education in Kyrgyzstan<br />

Cheryl and I scored a gig in<br />

Kyrgyzstan, Central Asia. I work<br />

in a NZ Polytechnic in curriculum<br />

development (helping to develop<br />

courses of study). A former colleague<br />

told me of a contract in Kyrgyzstan<br />

for 3 weeks helping to make courses<br />

there more accessible to people with<br />

disabilities. Applying for the contract,<br />

I got it on the basis of my experience<br />

in curriculum development and my<br />

experience with disability (I’m a C6<br />

Tetraplegic). Realising I needed help to<br />

bring inclusive education to Kyrgyzstan<br />

(its more than a one person<br />

job), I dragged Cheryl (caregiver,<br />

photojournalist and diplomat) along<br />

with me.<br />

The Miracle<br />

We got there and back in two pieces!<br />

We flew on Air New Zealand to<br />

Auckland, then China Southern Airlines<br />

to Guangzhou, again to Urumqi, and<br />

again to Bishkek. Forty seven hours<br />

to get there and 36 hours to get back<br />

(including stops at airports). Definitely<br />

not for the fainthearted, the impatient<br />

or for the easily frustrated, or large of<br />

stature. Actually, only for the lunatics.<br />

We figured the average age of the<br />

employees at the Chinese airports<br />

was about 17, unfortunately at this age<br />

they don’t seem to have any clues or<br />

authority and it was a struggle getting<br />

sensible help. Fortunately, we got<br />

upgraded to Premier economy on the<br />

longer flights. For some reason their<br />

planes won’t allow the armrest at the<br />

end of, or between, the seats to lift up,<br />

so that it is very difficult to transfer<br />

into the seats and if you do manage to<br />

score an empty seat next to you, you<br />

can’t lie down.<br />

The Kyrgyz…<br />

Decent people- not greet people in<br />

the street people, but they could be<br />

affectionate (1060814). Their history<br />

is an on-going intersection between<br />

globalisation and nomads. Like a cross<br />

between the Hungarians and the<br />

Mongols.<br />

-poverty poor- but the people are<br />

somewhat cared for (a Socialist relic<br />

of the Soviet Union). It is safe enough<br />

wandering around still.<br />

…and their dirt<br />

The farthest anybody can get from<br />

the ocean and surrounded by dodgy<br />

neighbours. Monumental mountains<br />

(1060638), rivers and lakes, just like the<br />

Southern Alps and steeped steppes. As<br />

for animals there were sheep, horses<br />

(106706) and crows, crows, crows.<br />

Steps of the steppes, steeped in<br />

monuments<br />

There seems to be some deeprooted<br />

cultural prevalence for steps.<br />

A ‘Stairway to heaven’ propensity of<br />

the people. It is said that at the top of<br />

Mount Kyrgyzstan is one last pile of<br />

steps to climb. The Kyrgyz also love<br />

monuments (or their rulers do): their<br />

sheer numbers fall short of the steps,<br />

but their monumentalism surpasses<br />

them. They consist of Soviet heroes<br />

and past dictators; to the war, the<br />

other war, and all the other wars too;<br />

to dictators and revolutions, past<br />

6


traumas and triumphs; creating a history and an identity<br />

for the nation (an identity of revolt).<br />

Where the money from the tin buried under<br />

Angela Merkel’s mattress is going<br />

My part of the contract was to adapt the curriculum of<br />

three courses at three different adult education centres to<br />

be more inclusive to people with disabilities. It is part of<br />

a larger project for a French organisation called Handicap<br />

International that seeks to steamroll inclusive curriculums<br />

across the Kyrgyzstan education system, flattening all<br />

steps in the way. Their part of the contract was to get us<br />

there, stuff us full of food and get us back home alive. The<br />

funding all comes from the European taxpayers. We had<br />

three workshops (IMG 1031 & 1081). One to choose the<br />

jobs to train people for (we chose cooking, seamstress<br />

and appliance repair), one to work out the method to<br />

adapt the curriculum and a final one for the hell of it.<br />

When I returned to New Zealand I had to submit a<br />

report explaining how I had spent Angela’s savings and<br />

how those steps would be steamrolled before their eyes.<br />

The moral of the story<br />

You never know where jobs and contacts will lead. My<br />

advice is to take all opportunities etc… as travel is<br />

exhilarating. But even if travel is not possible we now<br />

have access to the whole world through innovations in<br />

technology and media. The steps are there to stay. But the<br />

fight to flatten them continues.<br />

The plea<br />

Please send any photos, video etc. of you (or somebody<br />

with a disability) who is engaged in adult education to<br />

me at my email address trent@actrix.co.nz. I promised<br />

the Kyrgyz teachers I would send them to show them<br />

inclusion in action, but visual evidence of inclusive adult<br />

education in NZ is hard to find- I’m persevering thoughanything<br />

we can do to promote people with disabilities<br />

being productive is worthwhile.<br />

An on-going<br />

intersection between<br />

globalisation and<br />

nomads.<br />

7


Pain Management Centre<br />

Burwood Hospital<br />

Background<br />

The prevention and management of pain is a significant<br />

aspect of health care. There is increasing acknowledgement<br />

that pain, particularly persistent pain, is a multidimensional<br />

experience which requires a comprehensive, integrated and<br />

multifaceted model of care.<br />

Introduction<br />

Based at the Burwood Hospital site, the Pain Management<br />

Centre (PMC) provides a coordinated interdisciplinary<br />

service that is customised to meet the complex needs of<br />

individuals with persistent chronic pain.<br />

This service is one of only two recognised Interdisciplinary<br />

Pain Management Centres in New Zealand, the other<br />

is situated in Auckland. Smaller pain clinics/ services are<br />

situated around the country.<br />

The co-ordinated interdisciplinary service provides<br />

outpatient clinics and programmes; interventional<br />

procedures and occasional inpatient admissions.<br />

Referral to the service is predominantly via the GP, ACC<br />

case managers or by medical specialists. These are triaged<br />

and prioritised according to accepted criteria.<br />

The PMC team comprises of a wide range of health<br />

disciplines with extensive knowledge and experience in the<br />

assessment and treatment of persistent pain conditions.<br />

The coordinated approach encompasses the biopsychosocial<br />

approach to persistent / chronic pain. This<br />

approach recognises the complex nature of persistent pain<br />

and endorses the promotion of independence and self<br />

management for people experiencing this.<br />

Location<br />

The PMC service is currently housed in two settings.<br />

The service occupies space in the old Nurses Hostel at<br />

Burwood and the associated procedure clinic utilises two<br />

converted rooms in the main hospital near the Birthing<br />

Unit. Some patient procedures are also carried out in the<br />

Burwood operating suite.<br />

Current Services<br />

Initial assessment will routinely be via a Comprehensive<br />

Pain Assessment (CPA), which is carried out by members of<br />

the inter-disciplinary team. The CPA takes place over 3-4<br />

hours, with three assessment sessions looking at a range<br />

of aspects. The assessment team then meets to discuss<br />

and a team member will feedback the recommendations<br />

to the person being assessed (immediately following this).<br />

A report of the Comprehensive Pain Assessment is then<br />

prepared and sent out.<br />

If the person is being seen under ACC funding, then their<br />

ACC Case Manager will consider approval of the team’s<br />

recommendations and referral to the services indicated.<br />

If the person is being seen under Ministry of Health funding<br />

then referral to other services is made along with provision<br />

of services by the PMC team as indicated. These services<br />

may include (but not be limited to):<br />

• Medical, nursing or allied health follow-up appointments<br />

Medical procedures<br />

outpatient interdisciplinary programmes including:<br />

“Activity Focused” programmes- range in duration and<br />

include health professionals from various disciplines (as<br />

indicated)<br />

a comprehensive 3 week inter-disciplinary group<br />

programme (CHOICES )<br />

The PMC team currently includes medical specialists,<br />

nurses, occupational therapists, physiotherapists, clinical<br />

psychologists, social worker, clerical staff, clinical coordinator<br />

and a service manager.<br />

The team work together, with a focus on assisting the<br />

person with persistent pain to optimise engagement in<br />

valued activities, quality of life and independence/ self<br />

management.<br />

8


Pain research continues in many directions. Studies show<br />

that certain practices may have not just a psychological<br />

response but a also a physiological one. Distraction,<br />

meditation and aggression all may be ways to increase<br />

tolerance to pain.<br />

Research released on 07 September <strong>2012</strong> by Keele University<br />

demonstrates that playing a violent video game and entering<br />

the virtual world can give people a better tolerance for pain.<br />

The study of 40 volunteers found that playing violent ‘first<br />

person shooter’ games, in which a player kills enemies in a<br />

virtual environment, enabled participants to tolerate an ice<br />

water pain challenge for longer than if they had played a<br />

non-violent golf game. On average, participants kept their<br />

hands in the icy water for 65 per cent longer after playing the<br />

violent game, indicating that playing the game increased the<br />

participants’ pain tolerance. Heart rate was also shown to<br />

increase.<br />

The researchers suggest the increased pain tolerance and<br />

heart rate can be attributed to the body’s natural ‘fight or<br />

flight’ response to stress, which can activate descending pain<br />

inhibitory pathways in the brain reducing sensitivity to pain.<br />

The study was prompted following research by the same Keele<br />

University team showing that swearing increases people’s<br />

tolerance for pain. Senior lecturer in psychology at Keele<br />

University, Dr Richard Stephens, a who led the study, said: “We<br />

assumed that swearing eases pain by sparking an emotional<br />

reaction in participants – most likely to be aggression – in<br />

turn setting off the body’s fight or flight response. This latest<br />

study was a test of that assumption in which we set out to<br />

try and raise participants’ aggression levels by having them<br />

play a violent video game. We then tested the effect on pain<br />

tolerance. The results confirm our predictions that playing<br />

the video game increased both feelings of aggression and pain<br />

tolerance”.<br />

Intriguingly, the new study suggests that playing violent video<br />

games may be a good way to cope with pain, at least in the<br />

short term. Dr Stephens continued: “Pain researchers have<br />

already been exploring the use of virtual reality as a way of<br />

helping people better deal with pain. A group in Seattle, USA<br />

encouraged children with severe burns to explore a snowy<br />

virtual landscape while their dressings were changed. This<br />

reduced the amount of pain and discomfort they felt during this<br />

procedure”.<br />

The results have been published in the journal Psychological<br />

Reports, which specialises in empirical, theoretical, mainstream,<br />

and alternative views on issues in psychology.<br />

online from: The Huffington Post UK<br />

Mental distraction really can reduce pain, and<br />

the effect is not just in the mind, research has shown.<br />

Scientists carried out scanning studies which showed how a<br />

distracting memory test blocked incoming pain signals.<br />

Volunteers were asked to complete either a hard or easy<br />

letter memory task while having a painful level of heat<br />

applied to their arms. While distracted by the harder task,<br />

they perceived less pain. This was reflected by lower activity<br />

in the spinal cord which could be seen in the functional<br />

magnetic resonance imaging (fMRI) scans.<br />

“The results demonstrate that this phenomenon is not<br />

just a psychological phenomenon, but an active neuronal<br />

mechanism reducing the amount of pain signals ascending<br />

from the spinal cord to higher-order brain regions,” said<br />

study leader Dr Christian Sprenger, from the University<br />

Medical Centre Hamburg-Eppendorf in Germany.<br />

The findings are reported online in the journal Current Biology.<br />

9


A Spinal Cord<br />

Stimulator<br />

In the last edition of the Spinal Network News I wrote about<br />

the types of pain I have experienced since sustaining a SCI in<br />

November 2006. Since writing that article I have had a spinal<br />

cord stimulator (SCS) placed in an attempt to reduce muscle<br />

spasticity and pain in my lower trunk and legs. This device<br />

provides a neuromodulation effect and, while the use of this<br />

device for the treatment of spasticity is somewhat novel,<br />

it is commonly used for chronic pain disorders including<br />

some types of neuropathic pain and complex regional pain<br />

syndrome.<br />

For various reasons I identified that I needed to withdraw and<br />

come off the oral baclofen that I take to control my high tone<br />

and spasticity. In-depth discussions about different treatment<br />

options for my spasticity with Dr Rick Acland (spinal cord<br />

injury and pain management consultant) from the Burwood<br />

hospital and Mr Martin MacFarlane (neurosurgeon) from<br />

Christchurch hospital narrowed the possibilities down to<br />

either an intrathecal baclofen pump or the SCS. The decision<br />

to have spinal surgery and commit myself to a hospital stay,<br />

temporarily reduced independence and further rehabilitation<br />

was something I thought carefully about and was not a<br />

decision I made lightly! Weighing up the pros and cons of the<br />

two options I decided to try the SCS. On the 18th September<br />

<strong>2012</strong> I had surgery to place the device which was done<br />

under a combination of spinal and general anaesthesia. The<br />

SCS consists of a plate of stimulating electrodes (implanted<br />

in the epidural space at the level of T11), an electrical pulse<br />

generator (implanted under the skin in the lower abdominal<br />

area) and conducting wires connecting the electrode plate<br />

to the generator (placed beneath the skin). There is also a<br />

generator remote control for programming and control of<br />

the device.<br />

Thanks to the talented team of Dr Acland, Mr MacFarlane and<br />

their colleagues, the surgery went well and my hospital stay<br />

was as pleasant as possible. Two and a half months down the<br />

track I’m utilising the device daily and experiencing what it<br />

has to offer me. It is highly programmable in that each of the<br />

16 small electrodes on the plate can be recruited individually,<br />

or together, and along with the ability to vary the voltage,<br />

amplitude and pulse width there is an almost infinite number<br />

of different programmes to be discovered. With the help<br />

of Michelle Walker (Burwood pain management nurse and<br />

SCS programmer extraordinaire!), I am trialling the different<br />

options to see which is most beneficial. When switched on it<br />

produces a tingling or ‘pins and needles’ type sensation down<br />

my legs and it certainly reduces some of the clonic spasticity<br />

(rapid jumping of my legs) that I experience when travelling<br />

over bumpy ground in my chair. It also reduces some of the<br />

pain I experience in my legs. It has allowed me to reduce<br />

my oral baclofen dose by 50% thus far and I will continue<br />

to withdraw the baclofen further over the next couple of<br />

months. Time will tell as to whether it provides enough relief<br />

from the spasticity and associated pain and whether the<br />

residual high tone of my muscles and upper limb spasticity is<br />

tolerable once the baclofen has been completely eliminated.<br />

I’m grateful to be able to try this option and watch this space<br />

for further developments!!!<br />

Carolyn Beaver<br />

10


11


Snippets<br />

New Library<br />

Monitors<br />

Burwood Spinal Unit<br />

Repairs<br />

Ten Pin Bowling<br />

The Library in the Allan Bean Centre<br />

is currently looking very smart with 11<br />

new computer monitors. In August of<br />

this year, Sally Turner, Library volunteer<br />

mentioned to her son Michael that<br />

the Library was in great need of<br />

some decent monitors. Michael who<br />

works for the BNZ bank in Wellington<br />

mobilised his team who sold raffles<br />

and raised enough funds to purchase<br />

five screens through BNZ, and they<br />

more than matched it and donated<br />

a further 6 monitors. Remarkit the<br />

company who provided the monitors<br />

also donated to the NZST $200.<br />

Ricky, a member of Michael’s team<br />

rang round courier companies until<br />

he found one who would deliver<br />

the monitors from Wellington to<br />

Christchurch for free!<br />

The monitors arrived in November<br />

and were quickly set up and have been<br />

put to good use by our computer<br />

tutors and library clients.<br />

A big thank you to Sally for the idea,<br />

Michael and his team at BNZ who<br />

took the idea and made it happen, and<br />

to Remarkit and NZ Couriers.<br />

Earthquake repair work at the<br />

Burwood spinal unit is progressing<br />

with the removal of old ceiling tiles,<br />

installing more framing in to the<br />

ceilings space and replacing with light<br />

weight tiles throughout the ward.<br />

We acknowledge that this has been<br />

enormously disruptive for patients and<br />

staff, having to negotiate around the<br />

areas closed off and that the plastic<br />

corridor outside the unit is unsightly.<br />

We are reviewing the schedule and<br />

hope to be able to remove some of<br />

the plastic from the balcony over the<br />

next week as this work continues and<br />

the weather gets warmer. Depending<br />

on the contractors availability over<br />

the January period, the work will<br />

potentially be completed in early<br />

February 2013.<br />

There is not yet a final decision on<br />

how or when to repair the single<br />

rooms at the end of the ward. This<br />

will require significant forward<br />

planning in order that we can continue<br />

to provide services while this work<br />

is being undertaken. We hope to use<br />

the opportunity to install ensuites into<br />

the 5 single rooms that currently do<br />

not have them while this work is being<br />

done, so that will be a huge positive<br />

out of this process. The Burwood<br />

campus site needs to complete its<br />

overall review of earthquake damage<br />

to all facilities and then priorities and<br />

planning can take place on how and<br />

when areas will be repaired. Until<br />

this is finalised we are unable to give a<br />

clear picture of when this will be.<br />

We thank all patients and staff for<br />

their patience over this time.<br />

Over the last 5 months the Connecting<br />

People Women’s Group has been<br />

meeting one Saturday a month doing<br />

various fun activities.<br />

On the 15th September <strong>2012</strong> we went<br />

Ten Pin Bowling at Garden City Bowls<br />

with a great turn out. People were very<br />

helpful as the doors were not easy for<br />

wheelchair users.<br />

For those of us using chairs we were<br />

able to use a specially designed holder to<br />

place the bowling ball on. Going by the<br />

laughter and smiles on our faces I would<br />

say it was a very successful afternoon.<br />

The Connecting People programme<br />

including our women’s group gettogether<br />

days are for having fun times,<br />

doing those things we may not always<br />

plan on doing if by ourselves and most<br />

importantly connecting with other<br />

women with similar abilities, sharing our<br />

experiences and challenges and finding<br />

new ways to do things differently.<br />

Join us by contacting Debz Mitchell our<br />

Manager/Coordinator for Connecting<br />

People, NZ Spinal Trust.<br />

debzm@nzspinaltrust.org.nz<br />

phone: 03 387 1305<br />

12


Free wheeling fun<br />

Movie review<br />

‘The Intouchables’<br />

Ostler helps out!<br />

What do you get when you take a<br />

bunch of high profile Cantabrians and<br />

get them to race wheelchairs? Lots<br />

of laughs, crazy antics and increased<br />

profile and funds for the New Zealand<br />

Spinal Trust.<br />

As the official charity of the<br />

Benchmark Homes Festival of<br />

Cycling, held over the first weekend<br />

of <strong>December</strong>, the Trust hosted the<br />

Free Wheelin’ Frenzy 150. The fun<br />

wheelchair race utilised the last 150<br />

metres of the criterium course in a<br />

no-holds-barred celebrity race, which<br />

involved lots of direct contact as the<br />

12 competitors vied for first position<br />

in their specifically designed rugby<br />

wheelchairs.<br />

The competitors were an eclectic mix<br />

– three Olympic cyclists, Crusaders<br />

rugby players, supporters and sponsors<br />

of the Trust, local politicians, the<br />

Mayor’s wife and several prominent<br />

figures who have risen from the<br />

quakes as community leaders and<br />

motivators.<br />

Add to the fun the Top Gear Hand<br />

Cycle Challenge, where members of<br />

the public had the chance to ‘race’ a<br />

hand cycle. Paralympian Sue Reid was<br />

on hand to offer tips, advice and show<br />

us what it takes to be a champion.<br />

A story where the poor man from the<br />

projects (Driss) is hired to assist as<br />

caregiver to an aristocratic tetraplegic<br />

man (Phillippe) could easily fall into the<br />

stereotypical interpretation of the Eliza<br />

Doolittle model where the man from<br />

the wrong side of the tracks becomes<br />

refined and in turn reformed through<br />

his relationship with the rich disabled<br />

man... but not this time.<br />

As the movie goes on we get the<br />

impression that the only one with<br />

his head screwed on right is Driss.<br />

Certainly Driss is now exposed to<br />

opera, classical music and art, but his<br />

strong sense of self means that these<br />

elements don’t change who he is, in fact<br />

it is his introduction of joy to the house<br />

and it’s occupants that is the driving<br />

force through this film.<br />

He drives Phillippe’s sports car fast<br />

which describes freedom, he pumps up<br />

the music, he gives his boss the ‘air’ that<br />

he so desperately needs.<br />

Phillipe, in turn, has given Driss<br />

opportunity, trust and friendship. It is<br />

that friendship that creates in the film a<br />

warmth and universal watchability.<br />

The feeling I am left with at the end is<br />

that The Intouchables is an honest film.<br />

It discusses the more private elements<br />

of disability with humour and insight. It<br />

doesn’t drown in sentimentality, rather<br />

it’s the lack of it that is refreshing.<br />

While the subject matter includes<br />

disabilty, the film is not about that,<br />

rather it concentrates on mutual trust<br />

and respect. Based on a true story,<br />

the men the film depicts are still close<br />

friends.<br />

Another successful year for Ostler<br />

Wines. The Ostler grape harvesting<br />

fundraiser this year was carried out<br />

entirely in the vineyards of their<br />

suppliers Blue House Estate (Rob<br />

and Pam Crosbie) and Lemon Springs<br />

(Kanzak Trust – Paul Sinnott).<br />

There were only 27 tonnes of relatively<br />

easy-picked grapes vs. nearly 70 tonnes<br />

in 2011, hence the much smaller<br />

donation of $3736.32 compared with<br />

last year.<br />

Once again, Anne’s and Andy Pickles’<br />

and Pam’s efforts in coordinating the<br />

volunteers and providing sustenance<br />

resulted in a lot of fun , some serious<br />

work and an excellent pick for Ostler.<br />

This is a very worthwhile exercise all<br />

round, which has developed a life of<br />

its own, and we expect to continue in<br />

2013. Many thanks to all who helped<br />

with this fundraiser.<br />

13


MEN’S<br />

Since I started traveling with my van with no fixed abode<br />

some ten years ago, I have missed having a garage or shed<br />

where I can work on my projects. I like wood working,<br />

electronics, design and building human powered vehicles.<br />

When I lived in a flat in Woolston in Christchurch I had<br />

one car garage which soon filled up with all sorts of bits<br />

and bobs so there was no space to park my car then.<br />

There was enough space to work with electronics but<br />

I lacked tools and space for woodwork. Later when I<br />

bought my first campervan and shifted out of my rental<br />

flat I became shedless. I thought often that there should<br />

be some kind of community shed where I could pay<br />

minimal rent and work on my projects when I need to.<br />

sheds<br />

Jim Davis, Alan Kissel and other committee members<br />

were busy getting things organised while I was away from<br />

Nelson. So for a while I thought nothing is happening but<br />

to my surprise I got an email from the secretary telling me<br />

that Men’s Shed Waimea has finally got premises in August<br />

2011. I joined and paid my subs which were $25 per year.<br />

So a couple of years ago I heard about the Men’s Shed<br />

concept which started in Australia. There was a meeting<br />

to establish a community shed in Nelson/ Richmond area.<br />

The meeting was a full house of about 40 men. Mainly<br />

retired guys who have lot of time on their hands perhaps?<br />

The Men’s Shed concept is basically a community shed<br />

where men can get together, build things like furniture<br />

or even fix a car perhaps. Another function of Men’s<br />

Shed is that often many men who are not working full<br />

time, perhaps divorced or their partner has died, find<br />

themselves needing contact and company of other men<br />

while working on some worthwhile projects.<br />

So this idea suited me well as after my injury as I have not<br />

been in paid employment.<br />

The official opening was on 25 of September 2011. Nelson<br />

MP Nick Smith was speaking at the opening. Then there<br />

was ribbon cutting on the shed door and there was also a<br />

cake to cut. On top of the cake was a handsaw, a hammer<br />

and some other tool made of sugar of course. A barbeque<br />

followed with the usual Kiwi fare of sausages and steaks.<br />

Now the membership has swelled to about 80 but it is<br />

never too busy as every day you get from 2 to 10 people<br />

using the shed at any time. There is a supervisor present<br />

every day so I can ask for help using tools I do not feel<br />

safe with. A table saw is one I leave to others to use<br />

because of safety issues. The Good thing about Men’s Shed<br />

is that I can get occasional assistance doing my projects.<br />

There are plenty of older guys who are happy to share<br />

their advice on woodworking and metal work etc. But<br />

14


The shed door has a wheelchair accessible ramp and I use<br />

that when I wheel in with my 4 wheel kick scooter.<br />

Outside there is enough parking for several vehicles and<br />

then there is the garden plot which is about 10 m by 10m.<br />

The garden is producing potatoes, pumpkins, tomatoes<br />

and other veggies for members.<br />

There is a toilet with holding tank because we have not<br />

got sewerage pipes. Door should be wide enough to go<br />

through in a wheelchair but there is no hand washing but<br />

a sanitiser for hands.<br />

when it comes to computers and electronics I am the<br />

expert on those and can help others.<br />

The main area of the Waimea Men’s Shed is a 15 m by<br />

10 metre woodworking shed which has all sort of tools<br />

which are mainly donated by companies and community<br />

members in the Nelson/Richmond area.<br />

Some of the tools had to be repaired and made safe to<br />

use before the power was switched on.<br />

Plenty of hand tools were donated but some of them<br />

so old that they belong to the Men’s Shed Tool museum<br />

which is a small room on the front of the building.<br />

There is another room about 6m by 6m which has low<br />

benches suitable for some craft jobs.<br />

I have taken over a bit of bench space there for my<br />

electronics projects but I try to keep it clean if anyone<br />

else needs to use the space. The whole idea is to share<br />

the space, tools, ideas and fun doing our stuff.<br />

There is a kitchen with the usual stuff like fridge, cooking<br />

range with oven, hot water boilers, microwave and sink.<br />

None of them are wheelchair friendly as this building used<br />

to be a kennel club and the kitchen is pretty much what is<br />

was before the Men’s Shed took it over.<br />

The coffee and lunch breaks often gather a few people<br />

together for a chat and provide an opportunity to talk<br />

about anything of concern with other blokes. Lately there<br />

have been some younger members so it is not always talk<br />

about the good old times.<br />

There many other Men’s Sheds in New Zealand but I<br />

can only talk of my experience of Men’s Shed Waimea<br />

located at the back of Richmond A & P showground..<br />

Our shed phone number is 022 6241562 during opening<br />

hours which are Tuesday to Friday from 9am to 5 pm and<br />

Saturday from 9 am to 3 pm.<br />

I have recently visited Kaikoura, Masterton, and<br />

Whakatane Men’s Sheds. The Wairarapa Men’s Shed in<br />

Masterton is the biggest and most up to date when it<br />

comes to tools.<br />

For more info about Men’s Sheds around NZ check out<br />

the website www.menssheds.org.nz. The Men’s Shed<br />

Waimea is not on there yet.<br />

On the Men’s Shed website I counted 11 sheds in<br />

Canterbury and many more around the country so get in<br />

touch with your local shed and see if you can become a<br />

sheddie!<br />

Henry Van Campa<br />

15


od. However I was nearly pulled out of my wheelchair and<br />

into the surf while trying to battle them.<br />

Postcard to<br />

Great Barrier Island<br />

I was a little apprehensive about my virgin voyage to the<br />

Great Barrier Island as I am a paraplegic following an injury<br />

in a bus crash as a teenager. However once we drove onto<br />

terra firma from the ferry after a rather rough trip across<br />

high seas from Auckland all my concerns dissolved.<br />

My husband, Dave, daughter Georgia age 3, three dogs, and<br />

brother and sister in law were the crew for a week on ’The<br />

Barrier’ and boy did it go quickly. We were well prepared<br />

with litres of beer, lots of food (I know that doesn’t support<br />

the local economy much – sorry!), a boat, two road vehicles<br />

and my Argo which is a six wheeled amphibious off road<br />

number. A kind woman had lent us her Bach in Medlands<br />

tucked behind the sun bleached beach. It was very<br />

accessible for my wheelchair and we soon made ourselves<br />

at home. I took a plastic outdoors chair with me to plonk<br />

in the shower along with a soft cushion to sit on and that<br />

was all my needs solved. My husband lifted me onto my<br />

hand controlled Argo and off we went down the beach. I<br />

was highly excited to catch a shark and a sting ray with a<br />

A highlight was fishing on the boat and winding in the<br />

biggest snapper I have ever caught. It was out in the bay<br />

from Tryphena and I’m sure some locals would have heard<br />

me squealing with delight from the shore. Dave is a scuba<br />

diver and we dined on crayfish and scallops which was<br />

another real treat. I even got in the water to do some<br />

snorkelling and was thrilled to see young snapper, kawhai<br />

and other specimens among the kelp below me in Blind<br />

Bay. I felt welcome wherever I went and met a couple with<br />

a Bach on the main drag of Claris who took us along the<br />

beach and pointed out the amazing range of flora – from<br />

oyster catchers and dotterels to brown ducks and herons.<br />

Now they are considering putting a ramp into their house<br />

over the steps so other wheelchair users can holiday on<br />

the Barrier, which is fantastic.<br />

As I drive with hand controls I have one hand on the brake/<br />

accelerator lever and the other on the steering wheel. I<br />

am sure some locals must have thought I was very rude as<br />

I didn’t have enough hands to comply with the custom of<br />

waving to everyone along the road! I did try a few times<br />

but it was a bit dangerous to attempt while winding up the<br />

hills on dusty gravel roads towing my Argo on its trailer.<br />

My husband’s great grand-father was a teacher and minister<br />

on the island many years ago. He planted the big Norfolk<br />

pine that still stands near the original school house in<br />

Tryphena. We took a few photos of it and were thrilled<br />

16


to see the old school house is still in good nick. The week<br />

flew by and I didn’t get a chance to pop into Aotea FM. I’m<br />

a radio journalist by trade and would love to return and<br />

spend a bit of time in the station’s HQ as it looks like fun.<br />

I listened to it regularly and really enjoyed the DJs music<br />

choices, so how about someone sponsor my next trip and<br />

I’ll spin a few yarns on-air?! We all enjoyed the smooth<br />

ferry trip back to the Mainland with sun tans, smiles, sand<br />

covered clothes and a chilly bin of fish fillets. The car-ferry<br />

does not have disabled access so I stayed with the vehicles<br />

on the deck as I obviously couldn’t go down the narrow<br />

stairs on board, the bonus was I got a free fare. I was<br />

talking to an elderly man on the boat who told me that<br />

‘The Barrier is a man’s island.’ ’What do you mean?’ I asked<br />

him and he told me there’s nothing for ladies like me to do<br />

there as there’s no shops or anything like that. I got rather<br />

fired up and said I certainly didn’t go there for a week to do<br />

some #$%& knitting! Thanks to everyone who I met for<br />

making it an enjoyable experience for us all and I hope to<br />

return to catch BIGGER fish and see more of your beautiful<br />

island.<br />

Sally Wenley<br />

17


PROGRAMMES<br />

Garden Project<br />

Something special is happening. It will<br />

be a place that will bring a lot of joy<br />

and peace.<br />

Where you can literally stop<br />

and smell the flowers.<br />

This is the vision of The New Zealand<br />

Spinal Trust’s Connecting People<br />

Senior Coordinator Debz Mitchell. It<br />

happened one day when all the main<br />

players in the ‘Brains Trust’ had the<br />

same vision simultaneously. The ‘Brains<br />

Trust’ consisted of Debz, Shirley Stead<br />

who was looking for a garden project<br />

for Parafed youth and Landscape<br />

Designer Les Gray.<br />

The existing garden located between<br />

the Occupational Therapy Department<br />

and Physiotherapy Department at<br />

Burwood Hospital was originally<br />

designed for patients and staff but had<br />

not been used as intended. It needed<br />

redesigning to make it a valuable<br />

resource for wheelchair uses that want<br />

to either grow vegetables, flowers or<br />

just relax in a setting that was restful.<br />

Head of Occupational Therapy, Cherie<br />

Porter got the thumbs up from the<br />

CDHB for the use and redesign of the<br />

garden area and brought a great deal<br />

of joy to everyone concerned. A big<br />

bouquet should be given to the CDHB.<br />

Les came up with a plan after a<br />

hilarious measuring up session with<br />

Pat Edmonds. Imagine two tetraplegics<br />

with measuring tape in hand, fumbling<br />

through the garden working out<br />

accurate measurements to the preexisting<br />

garden. Needless to say it was<br />

a time of mirth and frustration with a<br />

great deal of inventive problem solving<br />

thrown into the mix. He presented<br />

his plan at the book launch of Bob<br />

Parker’s book ‘Ripped Apart’ with the<br />

proceeds for the book going to the<br />

Connecting People Programme. The<br />

plan was very well received.<br />

Shirley and Les hooked into the<br />

defoliation and were joined by Pat and<br />

Debz in clearing out the unwanted<br />

plants and weeds. With taskmaster<br />

Les at the helm, Pat was made to<br />

suffer lifting, dragging and digging up<br />

shrubbery. Shirley was hard at work<br />

tidying up a garden we had no hope<br />

of reaching. Between the team we<br />

cleared out a lot of unwanted debris<br />

and although we had a smile on our<br />

faces, we could tell by the aching<br />

muscles that this wasn’t our day job.<br />

Just like a good trilogy, the project will<br />

continue…………<br />

Debz Mitchell and<br />

Pat Edmonds<br />

18


19


Wheelchair users making tracks<br />

One of the biggest frustrations for wheelchair users is the limits<br />

of where they can take their wheelchair. A new product has hit<br />

New Zealand shores, giving those with disabilities access to the<br />

most challenging – and impossible terrain – sand, snow, gravel and<br />

grass.<br />

Designed in Germany by leading wheelchair manufacturer,<br />

Ottobock, this product essentially comprises of a platform with<br />

two caterpillar style tracks that allows it to be propelled over all<br />

types of surfaces. Users simply push their wheelchair up on to the<br />

platform, secure it in a couple of places and with a simple joystick<br />

operation, it is all go.<br />

While all-terrain wheelchairs are not something new in New<br />

Zealand, due to its design the Scoutcrawler can be used by multiple<br />

wheelchair users. There is the potential for organisations to<br />

purchase this product and then loan or hire to users for particular<br />

activities such as camping holidays or winter breaks at the snow.<br />

The team from Allied Medical travelled around New Zealand with<br />

the “absolutely fantastic” ScoutCrawler,<br />

allowing wheelchair users to experience<br />

it for themselves. The feedback from<br />

people who gave it a go was all really<br />

positive.<br />

Signe Bell, who managed the event for Allied Medical said<br />

“Everyone who saw it and tried it loved it. They all couldn’t get<br />

enough of the feeling it gave them to experience the freedom of<br />

going places they can’t usually go. One of our guests, Jason Barnes,<br />

for the first time in ten years he was able to go to the beach. After<br />

giving the ScoutCrawler a go, that all changed for him. He was just<br />

ecstatic.”<br />

Allied Medical is currently working with organisations and<br />

disability equipment dealers throughout the country to make the<br />

ScoutCrawler accessible for as many people as possible – so watch<br />

this space! For more information on the ScoutCrawler, contact<br />

Allied Medical on 0800 31 61 81 or visit<br />

www.alliedmedical.co.nz/scoutcrawler<br />

20


Christchurch Mayor<br />

donates book royalties to the<br />

New Zealand Spinal Trust<br />

Christchurch mayor, Bob Parker released his book<br />

Ripped Apart – a City in Chaos in early November and<br />

nominated the New Zealand Spinal Trust as the sole<br />

recipients of the royalties from the book. More specifically,<br />

he has asked for the funds to be used in growing the<br />

Connecting People programme.<br />

The book was launched with a Books and Bubbles event<br />

at the Allan Bean Centre on November 10th. Mayor<br />

Parker spoke highly of the work the Trust does and his<br />

passion for helping to raise awareness around the issues<br />

faced daily by people with disabilities. He is a passionate<br />

supporter of ensuring the city’s rebuild incorporates all<br />

the elements that will make it an international example of<br />

accessibility.<br />

“One of the most important things we must do when we<br />

rebuild Christchurch it to make it a place for everybody.<br />

Regardless of a person’s ability to move, see or hear we<br />

must build a better place for us all and our children to<br />

follow. Christchurch must be a truly accessible city that<br />

we can all share and contribute to equally.”<br />

Mayor Parker has a personal connection to the challenges<br />

those living with SCI face. Debz Mitchell, the Connecting<br />

People Senior Coordinator is the mayor’s sister. She talks<br />

of how Bob’s eyes were opened to the incredible network<br />

Connecting People has and how it jumped into action<br />

after the quakes, to support and care for its members. “It<br />

really showed him the potential and power a network like<br />

this has, and he got a deeper understanding of the issues<br />

people with disabilities face – not just in times of crisis,<br />

but in everyday life. Receiving these funds will enable us<br />

to continue the work of growing the network, not only<br />

in Christchurch, but extending it to all parts of New<br />

Zealand.”<br />

Mayor Parker described the journey of committing his<br />

post-quake experiences to the page as a difficult but<br />

cathartic journey. Ripped Apart reveals the arguments,<br />

indecision, petty jealousies, power struggles and policies<br />

that occurred within groups managing the city through<br />

its crises. These are balanced with glimpses of dedication,<br />

courage, compassion and a unique vision. It’s his story<br />

about people behind the scenes and events that have<br />

ripped apart Christchurch, not just physically, but<br />

politically and emotionally.<br />

“I have, and am, exposing myself by letting people into my<br />

private space and thoughts. It is a judgemental time (in<br />

Christchurch) right now and there are elements of what<br />

has happened that I have struggled with.”<br />

The New Zealand Spinal Trust feels privileged to have<br />

been chosen as the recipients of the royalties from the<br />

book. While the financial injection is welcomed, the<br />

publicity that is generated from these projects is also<br />

of great benefit to the Trust, says CEO Ben Lucas. The<br />

New Zealand Spinal Trust is also the official charity of the<br />

Benchmark Homes Festival of Cycling, which spans the<br />

first weekend of <strong>December</strong>.<br />

“To be able to increase the profile of the incredible work<br />

and people within the Trust is valuable. We hope and are<br />

actively working to increase our profile with the hope this<br />

will lead to more fundraising opportunities.”<br />

Ripped Apart – a City in Chaos is available from all<br />

major booksellers or can be purchased online at www.<br />

nationwidebooks.co.nz/product/Ripped-Apart-A-City-In-<br />

Chaos. RRP $39.99.<br />

21


ACC Update<br />

Spinal cord impairment strategy<br />

ACC and the Ministry of Health are developing a national<br />

spinal cord impairment strategy and implementation plan.<br />

The strategy aims to get the best possible results for<br />

people affected by spinal injury by providing the support<br />

necessary to achieve maximum independence and good<br />

health outcomes – whether in the home, community, or<br />

at work.<br />

The strategy kicked off by inviting key stakeholders<br />

to take part in it’s development. Earlier this year five<br />

advisory groups sought opinion and expert advice from<br />

a wide range of stakeholders. Stakeholders included;<br />

people with a spinal injury (including families, whanau, and<br />

supporters), District Health Boards, spinal units, primary<br />

and allied healthcare representatives, service providers,<br />

employers, community support organisations, client and<br />

family carer organisations. This stage of stakeholder<br />

consultation is nearing completion.<br />

The University of South Australia is carrying out a review<br />

of the latest research evidence on facilities, treatments,<br />

and rehabilitation practices that deliver the best results<br />

for people with spinal injuries. Meanwhile New Zealand<br />

market research company UMR is collecting qualitative<br />

evidence from people with a spinal injury and their<br />

families and whanau (including children and the aged). The<br />

research stage finishes at the end of the year.<br />

ACC Category Manager for Specialist Rehabilitation,<br />

John Payne says the strategy is about making sure New<br />

Zealanders have access to world-class spinal supports.<br />

“It’s important we’re open and transparent about the<br />

strategy’s development. A summary of progress so far is<br />

on ACC’s website. We’ll post the research results on the<br />

website when that stage is complete.” (Go to www.acc.<br />

co.nz/SCI-strategy).<br />

John says the next stage is considering what all this<br />

means for the delivery of spinal supports. The strategy<br />

working group is developing options early next year. After<br />

testing and confirming the options through the advisory<br />

groups, the draft recommendations will go out for public<br />

consultation. “We expect the public consultation round<br />

will occur mid-2013” says John.<br />

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22


Auckland Spinal Rehabilitation Unit –<br />

Black Friday Trust Deck Project<br />

You may remember in 2011, the Black Friday Trust held a<br />

Black Tie Dinner in Auckland in conjunction with the NZ<br />

Spinal Trust, the NZ Rugby Foundation and Catwalk, with<br />

the proceeds going to the Auckland Spinal Rehab Unit<br />

(ARSU), and research or a cure for SCI.<br />

It was this time last year that the NZ Spinal Trust and the<br />

NZ Rugby Foundation donated a significant sum of money<br />

to the ARSU from that event, and it was agreed that the<br />

majority of the money would go toward building a new<br />

deck off the dining room area to the West of the building.<br />

We’ve had fantastic news from the ARSU that the<br />

Counties Manukau District Health Board has signed off<br />

on the plans for the new deck and they are now going<br />

through the consent process with the local council.<br />

The formation of the deck will further enhance the<br />

patient experience and assist with rehabilitation by<br />

allowing easy access to the gardens and the natural<br />

environment away from the ward. This will mean<br />

increased access to a variety of outside areas which will<br />

allow for greater improvement in a patients function<br />

and general well being. This area will be an appropriate<br />

therapeutic environment which will provide more realistic<br />

rehabilitation to enable patients to function within<br />

their own community environment. It acts as a bridge<br />

between the hospital environment and the patient’s own<br />

community. It is a leisure area and will be used by patients<br />

and their whanau.<br />

The health system cannot fund projects such as this, but<br />

by working collaboratively with partners such as the<br />

NZ Spinal Trust and the NZ Rugby Foundation, we can<br />

enhance the patient and their whaanau’s experience and<br />

assist with better rehabilitation outcomes.<br />

As you can see by the plans, the deck is of considerable<br />

size, has fixed seating for visitors, nurse call points in the<br />

‘unlikely event of an emergency’, and what is great is that<br />

50% of the deck is shaded for those scorching summers<br />

and rainy days.<br />

The contractors are ready to go as soon as the building<br />

consent is approved, and there is the aim of having the<br />

deck started by January 21 next year.<br />

For those of us who have gone through the ARSU over<br />

the years, we recognise that this is the perfect spot to<br />

sit in the evening sun, and to get outside with a lovely<br />

outlook to get a breath of fresh air.<br />

It is with huge thanks to the Black Friday Trust that this<br />

deck is coming to fruition and we know that it will make<br />

a huge difference to the lives of those with SCI staying in<br />

the Auckland Unit, their friends and families.<br />

23


A Day at the Races<br />

The third annual Pukekohe Race Day<br />

was the best yet in terms of funds<br />

raised and fun had. 150 people had<br />

a great day out this year, with nonstop<br />

entertainment and comedy from<br />

our incredible MC, Aaron White, a<br />

delicious three-course lunch that left<br />

everyone stuffed, and a full programme<br />

of races organised by Counties Racing.<br />

Sheryl Viles organised a truly tempting<br />

array of auction prizes, including a<br />

Trelisse Cooper dress and Casey<br />

William’s Silver Fern jacket, and helped<br />

raffle off the signed Warriors shirt<br />

donated by Sir Peter Leitch. The room<br />

buzzed throughout the whole event,<br />

although you could have heard a pin<br />

drop when Trevor Harrison’s daughters<br />

stood up and gave an impromptu<br />

tribute to their dad, telling the tale of<br />

how he came by his spinal cord injury.<br />

They told us how much the support<br />

of the Auckland Spinal Rehabilitation<br />

Unit and NZ Spinal Trust means to<br />

them in terms of ‘getting their dad<br />

back’. Trevor is one of NZ Spinal<br />

Trust most enthusiastic and consistent<br />

supporters, and the Race Days most<br />

certainly would not happen without<br />

his hard work and enthusiasm for our<br />

organisation. The day raised $13,200<br />

– the highest amount from the event<br />

yet, which will go towards supporting<br />

the Kaleidoscope – Partnering People<br />

into Work – Programme in the North<br />

Island.<br />

A collection taken at Tauranga Race<br />

Course on our behalf raised $700.<br />

Our special thanks to Don Patterson<br />

at TRAC for trying to get the ‘Mills<br />

Reef Ladies Lunch’ off the ground,<br />

with NZ Spinal Trust as the beneficiary<br />

charity. Don did a huge amount of<br />

work and the publicity was magnificent,<br />

and it’s a very great shame the event<br />

didn’t go ahead. Our gratitude goes<br />

out to everyone involved and we hope<br />

we can try again next year.<br />

Our thanks to:<br />

Prize donors<br />

Catwalk Clothing<br />

Footloose Shoes<br />

Liddells Pharmacy<br />

Top Drawer Lingerie<br />

Caci Clinic<br />

Flower and Gift Shoppe<br />

Love to Learn Toys<br />

Michelle Ann Wool Shop<br />

Hobbies@Pukekohe<br />

John Fleet<br />

Ray Fowler<br />

Sir Peter Leitch<br />

Casey Williams<br />

The Meat Co Matamata<br />

Rosco’s Homekill<br />

Race Sponsors<br />

Drake Meddox<br />

Graeme Thomson Antique Jewellery<br />

Veterinary Associates Equine & Farm<br />

Collett Racing Stables<br />

IRT<br />

Michael Synott Charitable Trust<br />

Professionals Osborne Realty<br />

Trevor Harrison and daughters<br />

Organisers<br />

Trevor Harrison<br />

Karen Blanchard and the<br />

Counties Racing Team<br />

Sheryl Viles<br />

Aaron White<br />

24


Thanks to our<br />

Sponsors/Funders<br />

SkyCity Auckland Community<br />

Trust – $25,000<br />

Will support careers coaching for<br />

people in the Auckland area, and<br />

building relationships with new<br />

recruiters and businesses with work<br />

placements in <strong>2012</strong><br />

TRAC (Thoroughbred Racing<br />

Action Consortium Incorporated)<br />

$700 received from generous race<br />

meeting attendees on 1st September<br />

Trac.png<br />

ANZ Staff Foundation - $5,000<br />

For national Kaleidoscope costs<br />

ANZ.png<br />

COGS – $11,327<br />

Supporting Kaleidoscope costs<br />

nationally. Funds received from the<br />

Coastal Otago, Marlborough, Hutt Valley,<br />

North Taranaki, Tairawhiti, Mataatua,<br />

Hauraki, Waikato West and Papakura/<br />

Franklin Committees<br />

John Ilott - $1000<br />

For Kaleidoscope projects helping<br />

women back to work<br />

John Ilott logo.jpg<br />

Lions Club of Te Kauwhata & Districts<br />

For generous support at the Pukekohe<br />

Race Day and ongoing interest in our<br />

organisation<br />

Lions Club.png<br />

Counties Racing - $13,200<br />

Will support Kaleidoscope in the<br />

North Island<br />

Counties Racing.png<br />

25


New Zealand Spinal Trust,<br />

Private Bag 4708,<br />

Christchurch 8140<br />

Tel: (03) 383 7540<br />

Fax: (03) 383 7500<br />

info@nzspinaltrust.org.nz<br />

Web: www.nzspinaltrust.org.nz

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