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ISSN 1175-4753<br />
<strong>SPINAL</strong> <strong>NETWORK</strong> <strong>NEWS</strong><br />
December 2013 Volume 16 No 3<br />
Inside:<br />
Survey results p. 10<br />
Samoa Trip p. 14<br />
Summer garden p. 16<br />
Bowel health p. 21
CONTENTS<br />
EDITORIAL TEAM<br />
1 – Editorial<br />
2 – Ben’s blurb<br />
4 – NZST programmes<br />
6 BAIL/Catwalk<br />
9 Thanks Bob Parker<br />
10 Survey results<br />
14 Samoa trip<br />
16 Summer garden<br />
19 ACC updates<br />
21 Bowel health<br />
24 Book review<br />
25 Funders<br />
Bernadette Cassidy<br />
Suzanne REISER<br />
Hi, my name is Bernadette Cassidy and I am<br />
delighted to be part of the Spinal Network News<br />
Editorial Team. As the Library & Design Service<br />
Manager I am passionate about how libraries<br />
and how having access to quality and timely<br />
information empowers people ‘to reshape their<br />
lives’.<br />
Hi, my name is Suzanne Reiser, and I am a<br />
former patient of the Burwood Spinal Unit<br />
where I spent 4½ months with Guillain-Barré<br />
Syndrome. I have since been involved with<br />
volunteer work at the BSU and am delighted to<br />
be part of the editorial team.<br />
Hi, my name is Trudy Mulligan and I’m the Design<br />
Consultant for the NZ Spinal Trust. I have a<br />
Bachelor of Fine Arts majoring in design. I am also<br />
an exhibiting artist. I enjoy being a part of the team<br />
that produces this publication.<br />
CONTRIBUTING<br />
WRITERS<br />
Ben Lucas<br />
Bernadette Cassidy<br />
Mel Kelly<br />
Hans Wouters<br />
Raymond Burr<br />
Katie Farman<br />
John Bourke<br />
Debz Mitchell<br />
Trudy Mulligan<br />
TRUDY MULLIGAN<br />
Claire Freeman<br />
Hi, my name is Claire Freeman and I am employed<br />
full time by the Canterbury District Health Board<br />
as a Graphic Designer and Medical Illustrator.<br />
I have a Masters in Health Science, Otago<br />
University and plan on pursuing more study.<br />
<strong>SPINAL</strong> <strong>NETWORK</strong> <strong>NEWS</strong> is published by the NZ Spinal Trust<br />
Send your contributions to:<br />
The Editor <strong>SPINAL</strong> <strong>NETWORK</strong> <strong>NEWS</strong><br />
c/- New Zealand Spinal Trust, Private Bag 4708, Christchurch 8140<br />
Tel: (03) 383 7540 , Fax: (03) 383 7500<br />
Email: johnny.bourke@nzspinaltrust.org.nz<br />
Web: www.nzspinaltrust.org.nz<br />
Patron of the<br />
New Zealand Spinal Trust,<br />
Sir Tim Wallis<br />
DESIGN & LAYOUT: Trudy Mulligan, and Claire Freeman<br />
PRINTER: The Caxton Press<br />
DISCLAIMER:<br />
The views expressed in <strong>SPINAL</strong> <strong>NETWORK</strong> <strong>NEWS</strong><br />
are those of its contributors. They do not necessarily<br />
represent the opinion of the members of the Editorial<br />
Committee or the policies of the New Zealand Spinal<br />
Trust.
EDITORIAL<br />
Welcome to the third and final edition of the Spinal Network News for 2013. The end of the<br />
year always arrives quickly, and it is no different for the team at the SNN. I must pass on a<br />
huge thank-you to the editorial team: Trudy Mulligan, Suzanne Reiser, Claire Freeman, and<br />
Bernadette Cassidy for their commitment to designing and putting together this magazine<br />
throughout the year.<br />
In this issue, we have a number of interesting articles to keep<br />
you going over the summer break. We have updates from<br />
the New Zealand Spinal Trust and the CEO, Ben Lucas; an<br />
interesting insight into SCI in Samoa from a group of NZ health<br />
professionals; nutrition tips for a healthy bowel; and updates<br />
from ACC.<br />
We also review the fantastic response to our readers’ survey on<br />
page 10. This feedback has provided us with a great platform on<br />
which to build the foundations of a magazine that’s interesting,<br />
relevant, and informative for its readers. In our review, we<br />
summarise some of the main themes and share some examples<br />
of the comments we received. One major theme that came<br />
through in the feedback you sent was, wanting to hear more<br />
personal stories of others with a SCI. Comments often referred<br />
to how others with a SCI can be a source of unique advice and<br />
understanding, no matter how long one has had a SCI. I agree,<br />
and can think of countless times where others with SCIs have<br />
provided me with advice and ideas about traveling, parenting,<br />
physical access issues, increasing my independence, and even<br />
something as simple as tips to avoid bladder infections (drink<br />
more water!). Others with a SCI can provide ideas on the small,<br />
day-to-day activities of living with a SCI, but can also serve as<br />
examples of what types of life can be achieved in the long term.<br />
crash. In the book, Rob talks about his life prior to the accident,<br />
how the accident disrupts his family’s life, and how he, his wife,<br />
and young sons, attempt to return to their life living in the<br />
unrelenting outback of Australia.<br />
In 2014, we aim to have more stories that explore the personal<br />
experience of SCI. To help us, please get in touch if you, or<br />
someone you know, has a story to tell. We can help with the<br />
writing aspects. Also, please feel free to send letters to the<br />
editor regarding anything you read in the SNN, or any other<br />
SCI-related issue on your mind.<br />
From all the SNN team, have a safe and enjoyable summer.<br />
Johnny Bourke<br />
Editor<br />
johnny.bourke@nzspinaltrust.org.nz<br />
Along these lines, we review the book When the Dust Settles<br />
on page 24, written by Rob Cook. Rob is an Australian man<br />
working on a remote cattle station in the Northern Territory<br />
who learns to live with C4 tetraplegia following a helicopter<br />
1
EDITORIAL<br />
Welcome to the third and final edition of the Spinal Network News for 2013. The end of the<br />
year always arrives quickly, and it is no different for the team at the SNN. I must pass on a<br />
huge thank-you to the editorial team: Trudy Mulligan, Suzanne Reiser, Claire Freeman, and<br />
Bernadette Cassidy for their commitment to designing and putting together this magazine<br />
throughout the year.<br />
In this issue, we have a number of interesting articles to keep<br />
you going over the summer break. We have updates from<br />
the New Zealand Spinal Trust and the CEO, Ben Lucas; an<br />
interesting insight into SCI in Samoa from a group of NZ health<br />
professionals; nutrition tips for a healthy bowel; and updates<br />
from ACC.<br />
We also review the fantastic response to our readers’ survey on<br />
page 10. This feedback has provided us with a great platform on<br />
which to build the foundations of a magazine that’s interesting,<br />
relevant, and informative for its readers. In our review, we<br />
summarise some of the main themes and share some examples<br />
of the comments we received. One major theme that came<br />
through in the feedback you sent was, wanting to hear more<br />
personal stories of others with a SCI. Comments often referred<br />
to how others with a SCI can be a source of unique advice and<br />
understanding, no matter how long one has had a SCI. I agree,<br />
and can think of countless times where others with SCIs have<br />
provided me with advice and ideas about traveling, parenting,<br />
physical access issues, increasing my independence, and even<br />
something as simple as tips to avoid bladder infections (drink<br />
more water!). Others with a SCI can provide ideas on the small,<br />
day-to-day activities of living with a SCI, but can also serve as<br />
examples of what types of life can be achieved in the long term.<br />
Along these lines, we review the book When the Dust Settles<br />
on page 24, written by Rob Cook. Rob is an Australian man<br />
working on a remote cattle station in the Northern Territory<br />
who learns to live with C4 tetraplegia following a helicopter<br />
crash. In the book, Rob talks about his life prior to the accident,<br />
how the accident disrupts his family’s life, and how he, his wife,<br />
and young sons, attempt to return to their life living in the<br />
unrelenting outback of Australia.<br />
In 2014, we aim to have more stories that explore the personal<br />
experience of SCI. To help us, please get in touch if you, or<br />
someone you know, has a story to tell. We can help with the<br />
writing aspects. Also, please feel free to send letters to the<br />
editor regarding anything you read in the SNN, or any other<br />
SCI-related issue on your mind.<br />
From all the SNN team, have a safe and enjoyable summer.<br />
Johnny Bourke<br />
Editor<br />
johnny.bourke@nzspinaltrust.org.nz<br />
2
EDITORIAL<br />
Welcome to the third and final edition of the Spinal<br />
Network News for 2013. The end of the year always<br />
arrives quickly, and it is no different for the team at the<br />
SNN. I must pass on a huge thank-you to the editorial<br />
team: Trudy Mulligan, Suzanne Reiser, Claire Freeman,<br />
and Bernadette Cassidy for their commitment to<br />
designing and putting together this magazine throughout<br />
the year.<br />
In this issue, we have a number of interesting articles to keep<br />
you going over the summer break. We have updates from<br />
the New Zealand Spinal Trust and the CEO, Ben Lucas; an<br />
interesting insight into SCI in Samoa from a group of NZ health<br />
professionals; nutrition tips for a healthy bowel; and updates<br />
from ACC.<br />
We also review the fantastic response to our readers’ survey on<br />
page 10. This feedback has provided us with a great platform on<br />
which to build the foundations of a magazine that’s interesting,<br />
relevant, and informative for its readers. In our review, we<br />
summarise some of the main themes and share some examples<br />
of the comments we received. One major theme that came<br />
through in the feedback you sent was, wanting to hear more<br />
personal stories of others with a SCI. Comments often referred<br />
to how others with a SCI can be a source of unique advice and<br />
understanding, no matter how long one has had a SCI. I agree,<br />
and can think of countless times where others with SCIs have<br />
provided me with advice and ideas about traveling, parenting,<br />
physical access issues, increasing my independence, and even<br />
something as simple as tips to avoid bladder infections (drink<br />
more water!). Others with a SCI can provide ideas on the small,<br />
day-to-day activities of living with a SCI, but can also serve as<br />
examples of what types of life can be achieved in the long term.<br />
Along these lines, we review the book When the Dust Settles<br />
on page 24, written by Rob Cook. Rob is an Australian man<br />
working on a remote cattle station in the Northern Territory<br />
who learns to live with C4 tetraplegia following a helicopter<br />
crash. In the book, Rob talks about his life prior to the accident,<br />
how the accident disrupts his family’s life, and how he, his wife,<br />
and young sons, attempt to return to their life living in the<br />
unrelenting outback of Australia.<br />
In 2014, we aim to have more stories that explore the personal<br />
experience of SCI. To help us, please get in touch if you, or<br />
someone you know, has a story to tell. We can help with the<br />
writing aspects. Also, please feel free to send letters to the<br />
editor regarding anything you read in the SNN, or any other<br />
SCI-related issue on your mind.<br />
From all the SNN team, have a safe and enjoyable summer.<br />
Johnny Bourke<br />
Editor<br />
johnny.bourke@nzspinaltrust.org.nz<br />
3
NZST Programmes<br />
CONNECTING PEOPLE<br />
Hi again, I am so pleased that summer<br />
is here; I’m loving the warmer<br />
temperatures and getting outside in the<br />
garden more often. Speaking of gardens,<br />
slowly but surely we are getting on with<br />
our Burwood Spinal Unit garden project<br />
which you may remember us talking<br />
about a few issues back. The guiding<br />
influence and manager of the project<br />
is Les Gray, with the wonderful Shirley<br />
Stead by his side organizing volunteers<br />
to help with removing sand and replacing<br />
it with healthy soil. We plan to start<br />
planting-in very soon with the aim of<br />
creating a holistic environment that<br />
everyone will enjoy. So watch this space.<br />
We are still working on helping to<br />
resolve the issues that our members<br />
have with regard to being able to access<br />
wheelchair taxis when needed; so please<br />
keep your stories coming in. The more<br />
information we have, the more effective<br />
we can be when working with Total<br />
Mobility to help them understand what<br />
the issues are. Please email Debz at: deb.<br />
mitchell@nzspinaltrust.org.nz<br />
Pat and I had a productive trip north in<br />
July; we went to places we have not been<br />
before, namely: Taupo, New Plymouth,<br />
Hawera, Whanganui, and Napier. We also<br />
stopped in at Hamilton for lunch and<br />
met up with some great people. Our<br />
journey north got off to a rough start, as<br />
we nearly ripped off our muffler whilst<br />
disembarking the inter-island ferry!<br />
However, this turned out to be a blessing<br />
in disguise, as we discovered that one<br />
of our tyres was not in good shape and<br />
would probably have blown on the next<br />
leg of our journey which could have<br />
been disastrous! So, in the end, we were<br />
grateful for the message the muffler gave<br />
us... we would have had no idea until it<br />
was too late... a massive thanks to the<br />
muffler repairman.<br />
I want to thank Bob Knox in New<br />
Plymouth for all his continued support;<br />
he spread the word for us and put in a<br />
lot of effort which is hugely appreciated.<br />
Thank you also to Muir Templeton for<br />
having us to stay in his lovely home, and<br />
for spreading the word in his area.<br />
It was really great getting to know<br />
people a bit more<br />
and seeing so many<br />
familiar faces and<br />
some new. It is well<br />
worth the effort to<br />
do these trips. If we<br />
missed you and you<br />
want to make sure<br />
we see you next time,<br />
please let us know.<br />
We may not have you<br />
in our Connecting<br />
People database.<br />
We are updating<br />
details for our new<br />
database and are asking that anyone who<br />
has changed their contact details, such<br />
as home and/or email address, phone<br />
number; please let us know so that we<br />
can be up-to-date and also to ensure<br />
you will not miss any emails. You may<br />
hear, or may have already heard from us<br />
regarding this.<br />
All of us here at Connecting People<br />
wish all of you a very merry and safe<br />
Christmas and a positive and bright new<br />
year! We will be coming to a town near<br />
you next year!<br />
Thanks from Debz and the wonderful<br />
team here at Connecting People.<br />
Debz Mitchell<br />
4
Allan Bean Centre Library Hours<br />
Monday to Friday 9.30am – 5.00pm<br />
Saturday 9.00am – 1.00pm<br />
Sunday 1.00pm – 4.00 pm<br />
For more information about the<br />
library and information service, phone<br />
us on: 03 383 9484, or email us at:<br />
abclibrary@burwood.org.nz<br />
LIBRARY UPDATE<br />
Here is this month’s<br />
list of new books<br />
available from the<br />
Allan Bean Centre<br />
Library.<br />
Not a member?! It’s<br />
free to join! Just phone<br />
us on:<br />
03 383 9484,<br />
or email us at:<br />
abclibrary@burwood.<br />
org.nz.<br />
We will happily post<br />
books out to you.<br />
Book of the Month!<br />
“The Luminaries”, by Eleanor Catton – Winner of the 2013 Man Booker Prize.<br />
Set in 1866 during New Zealand’s gold rush, the plot follows the tale of Walter Moody,<br />
who stumbles into a secret meeting where 12 men discuss unsolved crimes.<br />
The Luminaries is an astonishing feat of storytelling, an intricately crafted novel that<br />
takes readers behind the scenes of a mystery to reveal how destiny is reshaped when<br />
circumstances shift, but everything remains connected.<br />
“Bertie’s Guide to Life and Mothers”, by Alexander McCall Smith<br />
This is the latest addition to McCall Smith’s Scotland Street series, which first appeared<br />
as a daily column in The Scotsman newspaper, and was later collected into book form.<br />
It’s always great to reconnect with these denizens of Edinburgh, and this book doesn’t<br />
disappoint. Once more, we catch up with the delightful goings-on at the fictitious 44<br />
Scotland Street. Alexander McCall Smith’s books are highly recommended.<br />
“Look Gorgeous be Happy: What a Woman Wants”, by Lisa O’Neill<br />
Lisa O’Neill was inspired to create her book after meeting so many women who were<br />
tired, stressed, and unhappy. It’s a handbook for loving the way you look and looking the<br />
way you love. With humour and loads of practical tips, Lisa provides the gentle ‘shove’<br />
so many women are looking for. Find out how to dress for your body type and your<br />
personality. Learn how to get the best from your life and gain a new outlook.<br />
“The Modern Family Survival Guide”, by Nigel Latta<br />
TV presenter, psychologist and bestselling author, Nigel Latta, gives common-sense and<br />
amusing answers to the complex issues surrounding today’s family in its many and varied<br />
forms. Utilising both the best current research about blended families, and over two<br />
decades of clinical experience, Nigel traverses the dilemmas and questions that modern<br />
family life presents.<br />
Bernadette Cassidy<br />
5
NZ Research Community Updates<br />
KALEIDOSCOPE UPDATE<br />
KIA ORA FROM BAIL<br />
I have worn many hats in my working life:<br />
aircraft terminal operations, corporate<br />
recruitment executive, the NZ air force,<br />
vocational rehabilitation, and, would you<br />
believe, part of the management team<br />
for a professional theatre company! I<br />
am passionate about people and life,<br />
and I am lucky, in that I get to facilitate<br />
clients’ discovery that life is for living and<br />
dreams can be achieved (when I am not<br />
behind my desk swimming in a sea of<br />
administration that is!!).<br />
Of late, there has been a shift in client<br />
dynamics on the spinal unit wards,<br />
enabling a great number of projects to<br />
gain momentum. The Kaleidoscope team<br />
has been working on client resources<br />
and workshops, as well as on the<br />
formulation of an employer education<br />
seminar series. The Auckland office<br />
has had some great client success with<br />
new employment and, in Christchurch,<br />
people returning to their pre-injury/-<br />
illness employment. Check out the next<br />
newsletter due out in November for<br />
some insights and stories in the space of<br />
employment<br />
The lead up to Christmas – yes, it is<br />
upon us I am told – can be a time of<br />
relaxation, reflection, and re-connecting<br />
with friends and family. We are all madly<br />
getting the ‘things-to-do’ lists done, so<br />
we can head off on leave. I, on the other<br />
hand, have been exploring professional<br />
development for the team and myself,<br />
and wanted to share with you some<br />
great tips and websites that I have<br />
encountered of late.<br />
• When you write your CV, create a<br />
header with lots of ‘buzz words/skills’,<br />
and then make the text white, and the<br />
document PDF format. If it is uploaded<br />
to a website that HR managers and<br />
recruiters scan (such as Seek), when<br />
they type in the skills they are looking<br />
for, yours will appear a great deal more<br />
frequently.<br />
• If you haven’t been exposed to the<br />
absolutely brilliant sharing-of-ideas<br />
website: TED Talks, check out: www.ted.<br />
com for inspiration, to challenge your<br />
thinking, improve your knowledge on a<br />
huge range of topical issues, or, just for<br />
fun and out of interest. A great person<br />
to start with is Brene Brown, or why not<br />
listen to Steve Jobs talk about his journey<br />
and the phenomenal success of Apple?<br />
• Get interested! Interested in why you<br />
do what you do, what direction your<br />
career is taking, and where you want to<br />
be in 5 years’ time. If that’s too hard, just<br />
think 2014: what’s your focus for the<br />
year ahead? Research companies you are<br />
curious about and interested in. What<br />
are your ‘non-negotiables’ when it comes<br />
to seeking employment?<br />
• At a recent seminar, I received<br />
powerful statistics regarding the<br />
website LinkedIn: 87% of employers<br />
use it frequently and 93% of people in a<br />
position to make decisions / recruitment<br />
agencies have profiles.<br />
Debbie, Meika, Lesley and I, always<br />
have our door open, so contact us to<br />
schedule a meeting if you’re an employer;<br />
pop in if you’re an existing client or just<br />
thinking ‘what now, where to from here?’,<br />
and engage in the wonderful space I get<br />
to call ‘work’.<br />
Mel Kelly<br />
To the readers of Spinal Network News<br />
who do not know us, we are a dynamic<br />
charitable trust committed to improving<br />
the life experience of people recovering<br />
from serious injury and illness. We do<br />
this by facilitating quality research and<br />
innovative approaches to rehabilitation.<br />
The purpose of all BAIL research and<br />
activities is to identify and remove<br />
barriers to independence. Our location<br />
in an office adjacent to the Burwood<br />
Spinal Unit is a real benefit to our work.<br />
However, we have many international<br />
connections, and collaborate from time to<br />
time with our foreign colleagues.<br />
One such current collaboration involves<br />
BAIL’s Research and Strategic Advisor,<br />
Anne Sinnott, and our friends at Spinalis,<br />
in Sweden. Anna-Carin Lagerström &<br />
Kerstin Wahman wrote an outstanding<br />
book entitled “The Art of Healthy Living<br />
with Physical Impairments”. When they<br />
decided it should be published in English,<br />
they turned to BAIL for help.<br />
It is well known that a healthy lifestyle is<br />
fundamental to well-being – both physical<br />
and emotional. This applies particularly to<br />
those who live with physical impairments.<br />
This book was written to inspire and<br />
impart the necessary knowledge to<br />
achieve a more active and healthy lifestyle.<br />
The book provides adapted programmes<br />
based on scientific research and clinical<br />
experience, as well as tips and advice<br />
from individuals living with physical<br />
impairments.<br />
Anne’s assistance in the adaptation<br />
process included travelling to Sweden<br />
for an intensive work period, which<br />
was funded in part by the ANZ Staff<br />
6
Foundation. The work is now not far<br />
from completion and the content is<br />
equally as valuable in English as it is in<br />
the original Swedish. Chapters include:<br />
The Top 10 Tips for a Healthier Life;<br />
Motivation and Lifestyle Change; Food and<br />
Weight Management; Physical Activity and<br />
Exercise; Mindfulness and Thought Training.<br />
Closer to home, we have several studies<br />
in progress around mobility and disaster<br />
response, with a view to improving<br />
responsiveness and reducing risk for<br />
wheelchair users. The earthquakes in<br />
Christchurch certainly alerted the country<br />
to the fact that our wheelchair population<br />
require some careful consideration and<br />
planning when it comes to evacuation and<br />
care in a major disaster. Be sure to check<br />
out our website (www.burwood.org.nz)<br />
for more details about us.<br />
As the year draws to a close, we wish<br />
you all a peaceful Christmas and holiday<br />
period.<br />
Kia kaha – Stay Strong<br />
From Debbie, Hans, Anne, and Brian.<br />
CATWALK<br />
Team CatWalk Crosses the Finish Line in<br />
New York<br />
It was a case of unfinished business for<br />
four runners representing Team CatWalk<br />
in November’s New York Marathon.<br />
After super-storm Sandy put an end<br />
to the 2012 event, the quartet of Ollie<br />
Bradshaw, Dave Copley, Duncan Hawkesby<br />
and Mark Francis, decided to return<br />
and complete the 42.2km distance,<br />
banishing the memory of last year’s<br />
cancellation.<br />
Prior to leaving New Zealand, Hawkesby<br />
told the CatWalk Trust, “I am back to tick<br />
this off my bucket list as part of Team<br />
CatWalk, 2013. Fundraising for a magnificent<br />
cause such as CatWalk is brilliant.”<br />
Hawkesby finished the marathon in just<br />
over three hours, while Ollie and Dave<br />
came home in just over three and a half<br />
hours. The rest of the 11-strong team<br />
also finished the race, with team leader,<br />
Anna Hiatt, saying the entire CatWalk<br />
Team did amazingly well.<br />
“It was so inspiring to be a supporter<br />
alongside 2 million other spectators,<br />
watching everyone truly push their limits.<br />
Congratulations to the entire CatWalk<br />
team, not only for achieving such fantastic<br />
personal milestones, but also for your<br />
incredible support raising over $90,000<br />
for spinal injury research.”<br />
one foot in front of the other. It might<br />
hurt but at least I can use them; that, and<br />
an image of Catriona dancing with her<br />
husband Sam again.”<br />
Team Catwalk was also in New York to<br />
witness American, Tatyana McFadden,<br />
make history with her victory in the<br />
women’s wheelchair race; completing a<br />
sweep of the Boston, London, Chicago,<br />
and New York marathons in a single year.<br />
More than 50,000 runners started the<br />
race through the five boroughs. All of the<br />
runners were given blue ribbons to pay<br />
tribute to Boston. A Boston Marathon<br />
yellow line was also painted alongside<br />
the traditional blue line heading into the<br />
homestretch.<br />
The New York City Marathon returned<br />
after last year’s cancellation due to super<br />
storm Sandy. About 22,000 runners who<br />
had entered last year’s race, returned to<br />
the field for Sunday’s race, according to<br />
the New York Road Runners.<br />
Katie Farman<br />
Wairarapa-based Alex Tomlinson, who<br />
finished the event in just on five hours,<br />
was absolutely thrilled with her efforts,<br />
even when the going was tough.<br />
“When I was really struggling I kept saying<br />
to myself, “remember why you are<br />
here Alex … all you have to do is put<br />
7
System<br />
UPGRADE<br />
The latter part of this year has seen us seriously upgrade our<br />
organisation systems here at NZST. With the help of KOORB<br />
Consulting, we installed a database system (Microsoft<br />
Dynamics CRM) that now ensures we have accurate records<br />
for connecting and communicating with everyone we deal<br />
with. Although we are still learning to drive the new system,<br />
we are thrilled so far with what it can do for us, and are<br />
very excited about its capabilities for the future. We wish to<br />
acknowledge the outstanding effort that KOORB put in, with<br />
special mention of Ian Luxton, our CRM designer, and Kristy<br />
Brown, our account manager.<br />
Essentially, we chose KOORB for a couple of key reasons;<br />
they worked very hard to get to know us and understand<br />
what we do and what we needed the CRM to do for us. We<br />
believed that they ‘got us’ and understood our unique needs<br />
as a not-for-profit organization, and they gave us a lot of<br />
confidence at the outset of the project. They have delivered<br />
powerfully on that confidence, and have continued to work<br />
hard with us now that the system has gone live.<br />
Second, they are a 100%-Kiwi company, and we love to<br />
support Kiwi business. If you are looking for a new business/<br />
organisation system, we recommend them highly, and would<br />
be happy to chat further about our experience with KOORB.<br />
Hans Wouters - Project Manager
THANKS<br />
Bob Parker<br />
The recent Local Body Elections saw the retirement<br />
of the Christchurch Mayor of the last two terms, Bob<br />
Parker. I couldn’t let this pass without recognising what<br />
Mayor Parker and his wife Jo did, not just for the city<br />
of Christchurch, but also for the NZ Spinal Trust – in<br />
particular, our Connecting People Peer & Family Support<br />
programme.<br />
First, for the city of Christchurch; it is hard for those of you<br />
who live out of town or in other parts of the country, to<br />
know just what impact the series of earthquakes has had on<br />
the people and the fabric of the city. The noise, the power,<br />
the energy: the fact that terra firma which we rely on to be<br />
stable and take for granted, became a violent and frightful<br />
adversary, was something that one had to experience to<br />
truly appreciate. People’s lives were lost, homes destroyed,<br />
roads torn apart, and the city all but demolished.<br />
and, to date, this has exceeded $5,000, with a final payment yet<br />
to be completed. This book is available for purchase from the<br />
NZ Spinal Trust for $30.00.<br />
To Bob and Jo – we thoroughly appreciate all the hard work<br />
you have both done for the city of Christchurch and for<br />
the NZ Spinal Trust, and hope that you enjoy a thoroughly<br />
deserved break from official engagements.<br />
Ben Lucas CEO NZ Spinal Trust<br />
Bob was such a calming presence for the city with his<br />
dulcet, rich baritone voice imparting a sense of calm in the<br />
chaos that was everyone’s lives at the time. His leadership<br />
was just what the city needed over that time of uncertainty.<br />
For the NZ Spinal Trust, Bob was, and still is, a very<br />
good friend. As CEO, Bob invited me to many functions,<br />
providing me with an endless source of networking<br />
opportunities which presented many good leads that have<br />
helped, and continue to add value to the Trust to this day.<br />
Bob’s wife, Jo, was just as avid a supporter of the Trust<br />
and has been a fantastic sport. Jo took part in a celebrity<br />
tandem sulky race behind a full-blown race-horse at the<br />
Canterbury Trotting Cup Race Day amongst a field of<br />
other celebs, coming in second to All Black, Andrew Hoare.<br />
Sitting trackside, it looked incredibly exhilarating and I was<br />
watching with just a twinge of jealousy! Jo also competed<br />
in the inaugural “Freewheelin’ Frenzy 150” wheelchair<br />
race at the Benchmark Homes Festival of Cycling event in<br />
Christchurch last year, winning the title!<br />
Finally, Bob wrote a book called “Ripped Apart, a City in<br />
Chaos”, about his experiences through the quakes. He<br />
kindly donated the royalties from this book to the Trust<br />
9
Survey<br />
RESULTS<br />
Results of the 2013<br />
Readers’ Survey – What You<br />
Told Us…<br />
A fantastic response to our readers’ survey provides a<br />
goldmine of ideas about how to improve the content<br />
of the Spinal Network News<br />
We received an incredible response to our Spinal Network<br />
News readers’ survey which we sent out with the August 2013<br />
issue, so a huge thank you to all those who took the time to<br />
send us your feedback. We now have a wealth of information<br />
to help us put together a magazine that truly reflects what<br />
you – the readers – want to see. Starting in 2014, we aim to<br />
include regular articles that address the areas you requested<br />
and suggested in the survey.<br />
We were very interested to know who is reading the SNN,<br />
and the majority of survey respondents are people living<br />
with a SCI (70%). One (31.8%) or two (50.9%) was the most<br />
common number of readers per household. We were also<br />
very interested in what people do with their copy of the SNN<br />
after they have read it and a massive 54.5% of respondents<br />
said they keep the SNN, with 20% lending it to others, and<br />
19% disposing of it. In this last category, people also remarked<br />
that they gave their copy of the SNN away to doctors’ clinics,<br />
medical centres, and a volunteer-run library. We were also<br />
curious to know, in what format people preferred to receive<br />
the SNN; the most requested option – a whopping 76.9% –<br />
said they want a printed hardcopy. A total of 15.4% requested<br />
an electronic copy, and 7.7% selected both. We hope to explore<br />
options regarding accessing the SNN online next year. We’ll<br />
keep you posted.<br />
We were very interested to know what you thought about<br />
the stories/articles we have in the SNN, and whether you find<br />
them interesting and relevant. A total of 60.5% respondents<br />
said they always find them interesting and, another 37.6% said<br />
they were sometimes interesting. Only 1.8% reported that<br />
stories/articles were hardly ever interesting. In terms of their<br />
relevance, nearly 40% said they found them relevant all the<br />
time, 57% said they were relevant sometimes, and only 4.7%<br />
said they were never relevant.<br />
An important part of this survey was to find out what topics<br />
you, the readers, want to see in the SNN (respondents could<br />
list more than one thing). Almost 70% of respondents said that<br />
they would like to see more articles on health issues, 63.6%<br />
said they would like to see more stories on technology and,<br />
49.1% more on travel issues. Also, 22.7% of readers would like<br />
Question 1<br />
Please select a category that best describes you<br />
Question 2<br />
On average, how many people in your household would<br />
read your copy of the SNN?<br />
I live with SCI 70%<br />
A partner of someone<br />
with SCI 3.6%<br />
A family member of someone<br />
with SCI 5.5%<br />
A carer of someone with<br />
SCI 0%<br />
A supporter of the NZST<br />
13.6%<br />
Other 7.3%<br />
1 31.8%<br />
2 50.9%<br />
3 10.0%<br />
4 2.7%<br />
5 1.8%<br />
More 2.7%<br />
10
to see more sports articles and 20.9% wanted to see more<br />
music and art/s stories.<br />
Survey respondents also gave us lots of very valuable<br />
comments regarding the topics they want to see more of in<br />
the SNN. These include more articles on health issues related<br />
to having an SCI; more personal stories about how people<br />
with an SCI live and manage their daily lives in the community;<br />
practical travel advice; information about SCI research and<br />
employment/study; and, how to find a balance between being<br />
a partner and a carer. The following is a sample of some of the<br />
comments you gave us:<br />
• “…articles on chronic pain and spasms, more health<br />
related articles”;<br />
• “More about what’s happening in the medical and scientific<br />
areas concerning help for people with SCI”;<br />
• “How people are dealing with the workplace”;<br />
• “More stories for family members …how to create a<br />
balance between being a partner and a carer”;<br />
• “More stories about what high-level tetraplegics achieve in<br />
their life”;<br />
• “Perhaps more Internet links for disabled travel. Perhaps<br />
also, you could get readers to rate the disabled rooms in<br />
hotels they have used and build up a list of good ones!”<br />
As mentioned above, many respondents wanted more articles<br />
that explore the personal, lived experience of SCI and want<br />
to know how others manage their lives. Hearing how others<br />
do things and knowing that others face similar problems<br />
was important to respondents. Here are some more of the<br />
comments we received:<br />
• “ …going back to basics for people with an SCI…<br />
regardless of how long a person has had an SCI, it’s good to<br />
be reminded of the basic issues and the journey”;<br />
• “…there are few to no tips and suggestions of how to<br />
cope with everyday life: attitudes to life, etc.”;<br />
• “...biographies of others with an SCI and their new lives”;<br />
• “It’s always good to read and see how others manage their<br />
SCI. It has taken me 10 years and I am still finding new<br />
ways to manage things. Getting ideas from others is always<br />
good.”<br />
A further issue that we have been aware of for some time<br />
now, is the need for more nation-wide stories. The majority<br />
of the New Zealand Spinal Trust’s operations are based in<br />
Christchurch, which can lead to an imbalance: with more<br />
articles orientated towards this end of the country. Readers<br />
commented that:<br />
• “Interesting, but too many Ch-Ch items”;<br />
Question 3<br />
After you read the SNN do you usually<br />
Question 4<br />
Overall, do you find the stories in the SNN interesting<br />
Keep it 54.5%<br />
Lend it to others 20.0%<br />
Dispose of it 19.0%<br />
Other 6.4%<br />
Yes, all the time 60.5%<br />
Sometimes 37.6%<br />
No, hardly ever 1.8%<br />
11
a HUGE thank you<br />
• “More Auckland stories”;<br />
• “I am a little concerned that the SNN neglects the North<br />
Island when it prints regional stories; Ch-Ch features so<br />
much, me thinks that Auckland is non-existent.”<br />
To remedy this situation, we are looking to have more people<br />
based around the country who can and will contribute articles.<br />
If you would like to share a story, please, get in touch with us. If<br />
you have little or no experience with writing, we can help you<br />
to write the article.<br />
On behalf of the SNN team, I would like to say a huge thank<br />
you to all those people who responded to the survey and<br />
wrote in with their ideas, suggestions and requests. We are<br />
really excited! We now feel we have an exciting platform on<br />
which to keep improving the SNN for you, the reader, and we<br />
aim to reflect many of the ideas from this survey starting in<br />
2014.<br />
John Bourke<br />
Question 6<br />
Do you find the stories in the SNN relevant to the areas<br />
in your life?<br />
Question 9<br />
How would you prefer to receive your SNN<br />
Yes, all the time 38.3%<br />
Sometimes 57.0%<br />
No, hardly ever 4.7%<br />
As a printed hard copy 76.9%<br />
As an electronic version 7.7%<br />
Both printed and electronic<br />
versions 15.4%<br />
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12
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here in New Zealand. The aim is to provide a bed to<br />
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The Molift Smart 150, designed and manufactured in Norway is the world’s lightest alloy folding patient lifter.<br />
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13
SAMOA<br />
Trip 2013<br />
In 2012, a team of health professionals from New Zealand<br />
travelled to Samoa with the goal of empowering people with<br />
a SCI to manage their health conditions. In August 2013, a<br />
team consisting of many of the same people conducted a<br />
follow-up trip to Samoa to see the people from the previous<br />
year and new clients with a SCI. Again, the aim was to impart<br />
knowledge and education to individuals with a SCI and their<br />
families, to help them manage the consequences of their<br />
injuries. I caught up with three members of that team from<br />
the Burwood Spinal Unit to find out about the experience:<br />
Maria van der Heuvel, a clinical nurse specialist; Marian<br />
Lippiatt, a nurse; and Annie Jones, a physiotherapist. In total,<br />
there were seven members in the team, who all travelled<br />
voluntarily and paid their own way, with some subsidy from<br />
Altus Resource Trust for accommodation.<br />
Maria has visited Samoa for the past three years, but for<br />
Marian and Annie, this was their first time on a trip like this.<br />
For Marian, the key motivation was to impart knowledge<br />
to the individuals with a SCI; their family members; and the<br />
health professionals: “(I wanted) to share knowledge about<br />
bladder management, pressure- area management, and bowel<br />
management… I got a shock at how basic things were,<br />
with no rehabilitation or home visits.” Annie had all always<br />
wanted to do volunteer work and, what really appealed to<br />
her, was the potential to help create long-term change: “it<br />
wasn’t like we were going across and then just coming back;<br />
it sounded like there was a whole programme being set up,<br />
and that really appealed to me – we were trying to build<br />
knowledge and work with the locals.”<br />
The team was in Samoa for just over a week and split into<br />
two groups in order to see as many people as possible in<br />
the short time they were there. Maria said they managed to<br />
spend around an hour with each client. During this trip, Maria<br />
saw the benefits of previous trips: “the majority of people<br />
who were in the new client category last time, are now free<br />
of pressure sores, they’re doing transfers properly, and have<br />
good bowel management. They’re even starting to teach<br />
others with a SCI.” Maria suggests that the individuals in<br />
Samoa are very receptive to knowledge and are very thankful<br />
when the New Zealanders come to visit.<br />
The time available for each visit was limited, and Annie<br />
described the visits as “trying to fit six months of<br />
rehabilitation into 1 or 2 hours.” At the start of each visit,<br />
the team would assess bladder, bowel and skin status, then<br />
discuss the management options available for each of these<br />
14
areas. Then, issues such as wheelchair seating were considered,<br />
and the team would try to organise any equipment they<br />
could, including wheelchairs and shower commodes, from<br />
the donated equipment they had. Annie would then give<br />
physiotherapy advice; for example, describing the benefits of<br />
passive stretching. To help pass on knowledge to local health<br />
professionals, two Samoan health workers travelled with the<br />
New Zealand team to observe and learn also.<br />
Many of the differences observed by the team related to the<br />
lack of a rehabilitation process, a lack of equipment, and a lack<br />
of knowledge around management. For example, mattresses<br />
are uncommon in the traditional Samoan house or fale,<br />
and even in hospitals. Wheelchairs were often ill-suited to<br />
individuals needs and were broken or damaged. Hoists were<br />
uncommon, and while some consumables were available,<br />
stocks were limited, and catheters were often used for long<br />
periods of time. This created terrible skin breakdown in<br />
some males who did not secure their leg bags, which dragged<br />
on the ground. Pressure sores were also common and the<br />
team observed some very advanced skin breakdown. They<br />
also observed that medication for spasm and pain was more<br />
or less non-existent. Marian found the access in the home<br />
environments to be very challenging for those with a SCI.<br />
Showers and toilets were often outside and inaccessible, so<br />
could not be used. Toileting and showering were sometimes<br />
performed outside.<br />
Annie noted a very interesting aspect, reporting that she<br />
saw no neglect of individuals with a SCI in terms of love and<br />
care. Even when people had no wheelchair, often spending<br />
most of their time on the floor, or performing their toileting<br />
and showering outside, not one person the team visited was<br />
lacking a caring, loving family. Any secondary complications<br />
were more a result of a lack of knowledge – not knowing<br />
the correct ways to avoid complications, or how to treat and<br />
manage them.<br />
Reflecting back on their experience, Maria, Marian and Annie,<br />
were all very glad they had made the trip, despite the heat,<br />
12-hour days, and all manner of novel insect life! Although only<br />
so much can be achieved in one week, being in a position to<br />
impart knowledge, and sometimes provide equipment that may<br />
improve the outcomes of those with a SCI in Samoa, was a<br />
very special feeling indeed. It is hoped these trips can continue<br />
as they really do help those living in Samoa with a SCI.<br />
John Bourke<br />
15
RAISING<br />
Veggies<br />
Everyone has motivations that<br />
cause an action to be taken. In<br />
my case, this year my Dad died.<br />
He grew vegetables, so now I<br />
must grow vegetables. It’s like<br />
carrying on a legacy. What came<br />
out of that was a desire of my<br />
own to see what I could do, a joy<br />
in seeing things come to fruition<br />
and then the pleasure in the<br />
eating.<br />
16
Lettuce, Beetroot, Radish, Spring Onion, Zucchini,Spinach, Silver beet, Carrots<br />
Raised gardens are a great option for those<br />
with limited mobility. My brother built mine<br />
for me. He then filled it with mushroom<br />
compost, topped off with a veggie mix that<br />
has all the good nutrients that plants need.<br />
I covered the soil with weed mat. (Cats like<br />
bare dirt.) I then cut the weed mat to open<br />
rows for the plants. I planted a combination<br />
of seedlings and seeds. Radishes are<br />
the best. They grow so quickly. If instant<br />
gratification is your thing, then radishes<br />
are the plant for you. Because this is my<br />
first raised garden, and is limited space, I<br />
decided on an intensive farming approach.<br />
With very little regard for how big plants<br />
get, I planted and hoped for the best.<br />
My gardening knowledge is restricted to<br />
what I gleaned off my parents as I grew up.<br />
I grew up on a farm and Dads vegetable<br />
garden was huge, some years encroaching<br />
onto the paddock next to the house. We<br />
had a lot of corn those years. In the city its<br />
different. But still possible. The plants are a<br />
bit over crowded but they seem to be<br />
coping.<br />
These two pages show you just one<br />
corner of the garden. I also have<br />
tomatoes in big pots, strawberries<br />
in bags hanging off the fence and a<br />
patio with potted herbs, nasturtiums,<br />
succulents and petunias. I may have gone<br />
a bit overboard in the first year, but it<br />
feels great!<br />
I bought some snail bait because a snail<br />
ate a sizable portion of one my petunias.<br />
I have aphids on some plants and I use<br />
an organic spray on them. My carers<br />
help me water them and I am planning<br />
an irrigation system. Other than that my<br />
intervention has been minimal. Nature<br />
has taken its course and now I am<br />
provided with a sense of belonging in a<br />
place, another reason to get out in the<br />
sun and salad for tea.<br />
Trudy Mulligan<br />
17
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18<br />
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ACC – SELF-MANAGEMENT:<br />
Taking Control of Everyday Living<br />
Muir Spreads His Wings with First Self-management<br />
Purchase<br />
As one of the first ACC clients signed up to the self-management<br />
pilot scheme, Muir Templeton reached an important<br />
milestone earlier this month.<br />
Porirua-based Muir went online and booked a return flight<br />
to the Burwood Spinal Unit in Christchurch. Instead of having<br />
ACC coordinate things for him as in the past, he had control<br />
of the purse strings and charged the fare directly to his selfmanagement<br />
account.<br />
“Previously, my case manager would have orchestrated those<br />
flights for me, forwarding lots of letters and emails. Now, I’ve<br />
got my bank- card and can do it myself. It’s my responsibility to<br />
ensure things like flights are booked. I can also arrange wheelchair<br />
taxi transport at the other end,” he says.<br />
A tetraplegic since injuring himself in a rugby accident in 1975,<br />
Muir is relishing the new-found freedom that self-management<br />
has given him. The upshot, he says, is a greater sense of responsibility,<br />
control, and purpose. The first funds were deposited<br />
into Muir’s self-management account in September and, while<br />
it’s early days, he describes the self-management pilot scheme<br />
as “encouraging”, and is looking forward to making more<br />
purchases.<br />
• Attendant care for personal care tasks such as showering<br />
and dressing;<br />
• Home help with tasks such as cooking, laundry, and cleaning;<br />
• Child-care;<br />
• Medical consumables like gloves or wipes;<br />
• Small items of equipment that need to be replaced within<br />
the following year;<br />
• Equipment maintenance and repairs;<br />
• Travel expenses associated with the person’s injury;<br />
• Regular day activity programmes related to the person’s<br />
injury;<br />
• Podiatry services;<br />
• Pharmaceuticals.<br />
Since being launched in August, the self-management pilot has<br />
been progressing steadily. Fourteen clients are now taking part;<br />
funds are being deposited into specially set up bank accounts;<br />
and pilot participants are purchasing their own goods and<br />
services.<br />
All going well, ACC is hoping to launch the self-management<br />
programme nationwide later next year. If you’d like to know<br />
more about ACC’s self-management pilot, send an email to:<br />
selfmanagement@acc.co.nz<br />
Raymond Burr<br />
“At the moment it’s working really well for me. Organising my<br />
own things gives me a sense of purpose. You can do it in your<br />
own time and in a relaxed manner. I’m sure that others with a<br />
serious injury will respond to it very well.”<br />
More about ACC’s self-management pilot programme<br />
ACC’s self-management pilot involves around 50 clients with<br />
disabilities across the lower North Island pilot region taking<br />
more control over purchasing their own supports and services.<br />
It aims to help people be more independent, with ACC taking<br />
a step back and trusting them to make their own support<br />
decisions.<br />
People on the pilot choose the services and supports they<br />
want to self-manage from their existing ACC package of supports.<br />
This might include:<br />
19
ACC SERIOUS INJURY ADSVISORY GROUP UPDATE<br />
I have been involved with the ACC Serious Injury Advisory<br />
Group (SIAG) since I came to the role as CEO of the<br />
NZST in 2011. It forms part of ACC’s three ‘Voice of the<br />
Consumer’ groups, which includes us as the SIAG. We meet<br />
every two months. When I started, SIAG was made up of<br />
individuals and, at the end of 2012, it changed to include<br />
organisations as well as individuals. To me, it was important<br />
to have the individual’s voice stay in the group to keep it<br />
grounded.<br />
ACC’s Serious Injury category includes spinal cord injury,<br />
traumatic brain injury, multiple amputees, vision impairment,<br />
and serious burns. Of course, I represent SCI. Brain injuries<br />
make up approximately 75% of ACC’s Serious Injury<br />
portfolio; spinal cord injuries approximately 20%; with the<br />
remaining 5% being multiple amputees, vision impairment, and<br />
serious burns.<br />
ACC has identified that there are systemic issues which they<br />
could be doing better on, and they want to improve this for<br />
the benefit of the end users. As a result, ACC has asked us,<br />
as representatives of the SIAG, to identify issues that affect<br />
our population. I went to our Connecting People Facebook<br />
group (check it out – it’s an awesome page!), and received a<br />
massive response which was brilliant. Personally I think it’s<br />
great that you all made the effort and I thank you for that.<br />
You’ll be wondering where we are at with all the issues that<br />
have been brought forward.<br />
other two ‘Voice of the Consumer’ Groups;<br />
• The COG prioritises all the issues, of which a small<br />
number then get presented to the ACC Executive,<br />
which then makes recommendations as to the<br />
action to be taken (realistically the ACC Executive<br />
can only deal with a few issues at a time).<br />
This seems, and is, a lengthy drawn-out process. We are<br />
dealing with a big bureaucracy here. Some issues are simple<br />
internal-process issues and can be addressed immediately;<br />
while others, which are legislative, cannot be actioned<br />
by ACC because the organisation is bound by Central<br />
Government statutes and laws.<br />
ACC is a very large corporation and things move slowly;<br />
however, we, as the SIAG, are working hard to get the main<br />
issues identified and actioned. I take my hat off to ACC for<br />
exposing themselves to constructive criticism in a bid to<br />
improve the outcomes for those of us with a serious injury. A<br />
positive outcome for us as end users is at the heart of ACC,<br />
and I do believe that they are serious about putting things<br />
right. It is a slow process, but it is one we must work with, so<br />
I thank all of you representing SCI for your input and, please,<br />
have patience: in the words of Rachael hunter, “it won’t<br />
happen overnight, but it will happen!”<br />
Ben Lucas CEO NZ Spinal Trust<br />
Briefly, the process is as follows:<br />
• The SIAG identifies the issues;<br />
• These issues get prioritised and we spend a lot of<br />
time making in-depth recommendations to remedy<br />
them. We can only work on a small number at each<br />
meeting;<br />
• The recommendations then get presented by our<br />
Chairman, Pati Umaga, to ACC’s Consumer<br />
Outlook Group (COG). The COG reports directly<br />
to the ACC Executive (Board);<br />
• The COG gets similar recommendations from the<br />
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TA iQ sets the New Standard<br />
The new TA iQ power chairs are designed to improve your outdoor drive comfort and access, while<br />
providing you with superior functionality indoors.<br />
So why is the TA iQ unique?<br />
Indoors: The TA iQ has the lowest floor to seat height of only 38cm/15”, lower than any other power chair.<br />
This allows you to easily sit at a desk or table, and improves your visibility and floor to ceiling height in a<br />
vehicle. Every TA iQ has the standard specification lift/elevation function of 30 cm (38-68 cm), allowing you to<br />
reach higher cupboards, benches, and basins. With a very small turning radius of only 45 cm, the TA iQ MWD<br />
can spin easily in tight spaces.<br />
Outdoors: The suspension on front and rear is very soft, providing a smoother ride when travelling over bumps<br />
and kerbs. The unique suspension design allows the TA iQ to climb over larger obstacles.<br />
Performance: The TA iQ is one of the fastest powerchairs with a top speed of 12.5km/h which it will reach in<br />
3 seconds. With larger batteries as standard it also has an optimum range of 40km, so you will travel further,<br />
faster.<br />
Designed and manufactured in Denmark with quality European motors, actuators and controllers. Crash safety<br />
tested and approved in Denmark in accordance with international standards ISO 10542-5 and 7176-19 (2008).<br />
Available in mid wheel drive (MWD), rear wheel drive (RWD) and front wheel drive (FWD) configurations.<br />
So if you are evaluating a new power chair you have to try the TA iQ for yourself. You can ask for a<br />
demonstration to purchase direct, or ask your therapist to arrange a MOH or ACC trial, then you decide.<br />
Seat height:<br />
Only 38cm/15”<br />
Suspension:<br />
More comfortable<br />
Safer:<br />
Crash test approved<br />
Higher:<br />
30 cm elevation<br />
Faster and Further:<br />
12.5 km/h, 40km<br />
0800 238 423 www.mortonperry.co.nz advice@mortonperry.co.nz<br />
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Keeping a<br />
HEALTHY<br />
Bowel<br />
There has been much interest in the book Eat Well Live<br />
Well with Spinal Cord Injury, by Kylie James and Joanne<br />
Smith, since it was reviewed in the April 2013 issue of the<br />
SNN. You can now purchase the e-book for CAN$19.95,<br />
or the hardcopy, for CAN$75, which includes shipping and<br />
handling. To purchase, visit: www.eatwelllivewelwithsci.com<br />
where you can also download three chapters for free.<br />
Good bowel management is one of the most important, and<br />
often challenging, parts of living with a SCI. Diet plays a critical<br />
role in the effective management of your bowel routine. Below<br />
are some tips and recipes taken straight from Chapter 2 of Eat<br />
Well Live Well, which explores nutrition that helps to maintain<br />
a healthy bowel. For more information, you can purchase the<br />
book from the website above, or, you can borrow it from the<br />
Allan Bean Library.<br />
Nutritional tips for a healthy bowel<br />
1) Eat 19-30 grams of fibre a day<br />
Fibre is a critical part of our digestive system; it helps us to<br />
absorb water, provides bulk to the stool and keeps it soft,<br />
making evacuation easier. There are two main types of fibre<br />
and we need both to prevent constipation and improve bowel<br />
function:<br />
Soluble fibre: forms a gel-like substance that makes the<br />
stool softer. Sources of soluble fibre include: apples, apricots,<br />
bananas, barley, beans, berries, figs, grapes, oats, peaches, pears,<br />
peas, and prunes.<br />
Insoluble fibre: adds bulk to the stool which helps matter to<br />
pass through your bowel. Sources of insoluble fibre include<br />
seeds, whole grains, and the skins of many fruit and vegetables<br />
such as the kumara.<br />
3) Take probiotics<br />
Probiotics are good bacteria. Two types that promote<br />
healthy bowel function are Lactobacillus acidophilus and<br />
Bifidobacterium. These bacteria help to ferment fibre to<br />
produce fuel for the cells in your colon. A healthy balance of<br />
probiotics in your bowel can enhance peristalsis (movement)<br />
and prevent constipation. Foods that contain probiotics<br />
include: unsweetened yoghurt, sauerkraut, miso, and pickled<br />
foods. You can also purchase probiotics supplements that<br />
contain Lactobacillus acidophilus and Bifidobacterium from<br />
your pharmacy.<br />
4) Eat 4-5 small meals a day<br />
SCI can disrupt the gastrocolic reflex which promotes<br />
bowel movement. So eating smaller, more frequent meals<br />
throughout the day can help to stimulate the gastrocolic<br />
reflex. Also, to take advantage of the gastrocolic reflex, try to<br />
consume a meal or warm drink about 30 minutes before you<br />
start your bowel routine.<br />
5) Try natural bowel aids<br />
Bran: Eating oat/wheat bran everyday can help to avoid<br />
constipation. Try to avoid too much highly processed bran in<br />
cereals that contain a lot of sugar or salt.<br />
Fresh ginger tea: Ginger can help to stimulate the digestive<br />
system and eases the passage of food through the intestines.<br />
Garlic: Garlic helps to destroy harmful bacteria in the colon<br />
which contribute to constipation.<br />
Liquorice root: This root has a natural laxative effect.<br />
Prunes and apricots: Prunes and apricots can have a laxative<br />
effect, but your body can develop a tolerance to prunes if you<br />
eat them too regularly.<br />
2) Drink 8-10 cups of water a day<br />
Your large intestine is responsible for re-absorbing excess<br />
water back into your body. When you are dehydrated, water<br />
is moved from your colon to serve other body functions,<br />
resulting in more solid stools that are harder to pass. Drinking<br />
8-10 cups of water a day helps to avoid becoming constipated<br />
and helps to maintain a good bowel program. It is also<br />
important to limit alcohol, coffee, and soda (fizzy/soft drinks)<br />
which are diuretics and can contribute to dehydration.<br />
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Recipes<br />
Summer Bean Salad<br />
This refreshing, quick and easy salad has tons of fibre to<br />
support healthy bowel function. Serves 4.<br />
Ingredients:<br />
• 2 cups of green beans<br />
• 1 can of red kidney beans, rinsed and drained<br />
• 1 can of mixed beans, rinsed and drained<br />
• 1 small red onion, chopped<br />
• 1 tablespoon of cumin seeds<br />
• 2 cups of lettuce<br />
• Dressing: 2 tablespoons of olive oil<br />
Directions:<br />
1. Cook green beans for 1-2 minutes in a pot of<br />
salted boiling water.<br />
2. Drain green beans and refresh in iced water till<br />
cool, remove and pat dry.<br />
3. Place kidney beans and mixed beans into a bowl.<br />
4. Chop green beans and add to the bowl with the<br />
chopped onion and lettuce.<br />
5. Toast cumin seeds in a dry pan till they begin to<br />
brown (this releases the flavour).<br />
6. Add cumin seeds to the olive oil; stir, and pour<br />
over salad.<br />
Yoghurt and Granola Parfait<br />
This is great for breakfast, lunch, a snack, or dessert. The<br />
probiotics in the yoghurt help to address diarrhoea.<br />
Serves 1.<br />
Ingredients:<br />
• 1 cup of plain Greek yoghurt<br />
• ¼ cup of granola (or any muesli and nut mix)<br />
• 1 cup of fresh berries (raspberries, blueberries,<br />
and/or strawberries)<br />
• Extras: you can add sliced almonds or flax seeds.<br />
Directions:<br />
1. Place yoghurt in a bowl.<br />
2. Add fruit and sprinkle granola on top.<br />
Image kindly supplied by: Nicole Engstrom @ What Matters Most Now blog<br />
23
BOOK review<br />
When the Dust Settles<br />
By Rob Cook<br />
Rob Cook has lived between<br />
Queensland and the Northern Territory<br />
all of his life, has worked as a fencer and<br />
bull rider, and, worked one of Australia’s<br />
most remote cattle stations, Suplejack<br />
Downs. Due to the sheer size of cattle<br />
stations in the Northern Territory,<br />
mustering using helicopters is a common<br />
practice. It was during a muster in 2008<br />
that Rob was in a helicopter crash that<br />
fractured his C4 vertebrae, resulting in<br />
complete tetraplegia. When the Dust<br />
Settles is a detailed tale of Rob’s life<br />
prior to the accident, how the accident<br />
disrupts his family’s life and, how he; his<br />
wife, Sarah; and their young sons; attempt<br />
to return to their life, living in the<br />
unrelenting outback of Australia.<br />
The first section explores Rob’s early<br />
years growing up in a family of seven<br />
children with a hard-working dad and<br />
an equally hard-working and caring<br />
mum. They moved around Queensland<br />
as Rob’s dad followed his work as a<br />
fencing contractor and, before long, Rob<br />
had left school and was working for his<br />
dad. After a falling out, Rob was sent to<br />
his grandparents’ on Suplejack Downs,<br />
where he developed a love for working<br />
in the wide expanse of the outback. As<br />
time passed, Rob lived in Queensland for<br />
24<br />
a period with his wife-to-be, Sarah. He<br />
was a professional bull rider for a time,<br />
but his love of the outback took him and<br />
Sarah back to Suplejack Downs where<br />
they settled and began raising their two<br />
young sons.<br />
The book then follows Rob through his<br />
rehabilitation journey in Adelaide, and<br />
the impact this had on his family – who<br />
rented a house for the duration of their<br />
time in Adelaide. Rob’s recollection of<br />
the hospital, moving from intensive care<br />
to the rehabilitation ward, and meeting<br />
other people with a SCI, will seem very<br />
familiar to readers who have been on<br />
this journey themselves. For example, the<br />
intense trepidation Rob experienced just<br />
crossing the road the first time he went<br />
out for lunch with his family, or wanting<br />
to hold his sons while in his hospital bed.<br />
The remainder of the book follows Rob’s<br />
journey as he and his family attempt to<br />
return to their life on Suplejack Downs.<br />
We see them take a house in Alice<br />
Springs, and Rob writes of the challenges<br />
associated with finding good carers<br />
(sometimes employing family members),<br />
organizing a vehicle, and learning to<br />
cope with the heat of the outback,<br />
secondary complications of autonomic<br />
dysreflexia and pneumonia, and dealing<br />
with health professionals who have little<br />
understanding of tetraplegia.<br />
While much of the book reflects Rob’s<br />
philosophical and positive outlook of his<br />
situation, he does still describe instances<br />
of being frustrated. For example, Rob<br />
invested a lot of emotion in returning<br />
to Suplejack Downs so when he, Sarah,<br />
and the boys, do manage to spend some<br />
time there, it is quite different to what<br />
he expected. Watching the men leave<br />
the homestead for the day and not<br />
being able to go and work the land –<br />
something Rob had known all his life – is<br />
hard to swallow. I appreciated this frank<br />
description of his personal frustrations<br />
and thought Rob could have included<br />
more details regarding the types of<br />
personal frustration he experienced.<br />
Rob found one outlet to channel his<br />
enthusiasm for working in the beef<br />
farming industry. He applied for, and<br />
won, a Nuffield Scholarship. This involved<br />
extensive travel to New Zealand and<br />
South America to visit farms, agricultural<br />
businesses, and industry people, in<br />
various countries. While Rob’s initial<br />
study focus was exploring the dynamics<br />
of emerging beef markets, he changed<br />
and began to look at what options exist<br />
for farmers like him that want to return<br />
to work following a serious injury.<br />
When the Dust Settles is an intriguing<br />
read that balances the personal story of<br />
Rob’s life with many universal aspects of<br />
living with tetraplegia which readers of<br />
the SNN will recognize: the challenge of<br />
returning home; the disruption to family<br />
dynamics; returning to work and an<br />
accessible community; managing health<br />
complications; and being more prepared<br />
when traveling. Attempting to return<br />
to their life in the outback of Australia<br />
gives this story an extra level of appeal,<br />
as it is such an unforgiving environment.<br />
When the Dust Settles would be an<br />
ideal Christmas present to anyone who<br />
likes an adventure story mixed with the<br />
realities of readjusting to life following a<br />
spinal cord injury.
Thank you to our<br />
Funders &<br />
Sponsors<br />
NZ Lotteries Grant Board - $592, 112<br />
The NZST were recently successful in being awarded multiyear<br />
funding which covers three years from the NZ Lotteries<br />
Grant Board.<br />
Flow Hot Yoga - $2225<br />
Are keeping our Peer and Family Support services running<br />
Community Organisations Grants Scheme - $8,400<br />
COGS Boards in the Far North, Waitakere City, Papakura/<br />
Franklin and Coastal Otago are all supporting the<br />
Kaleidoscope Programme in 2014<br />
SkyCity Auckland Community Trust - $25,000 towards<br />
Kaleidoscope costs in the Auckland Region<br />
Grants in 2011, 12 and again in 13 have supported careers<br />
coaching for people in the Auckland area, and helped build<br />
relationships with new recruiters and businesses to help<br />
Kiwis with SCIs find mentors and work placements.<br />
The Harcourts Foundation $5,000<br />
Supporting the Connecting People Garden Project at<br />
Burwood Hospital to create a completely accessible meeting<br />
and social space for patients and visitors<br />
NZ Spinal Trust Supporters<br />
Digiweb Group and Koorb Consulting<br />
Ongoing technical and system support during the rollout of<br />
Stages 1 through 3 of our Digital Strategy including:<br />
Support while hooking into the Canterbury District Health<br />
Board Fibre Cable<br />
Server hosting and ongoing support of our website (Digiweb)<br />
The implementation of a Microsoft Dynamics CRM system<br />
to provide one central, modern database to replace the<br />
28 - yes, 28 - individual databases that were held across the<br />
organisation.<br />
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<br />
25