Create successful ePaper yourself
Turn your PDF publications into a flip-book with our unique Google optimized e-Paper software.
SPINAL NETWORK NEWS<br />
<strong>August</strong> <strong>2008</strong> Volume 11 No 2 ISSN 1175-4753<br />
Robin Tinga - Professional Rower<br />
DR ANGELO ANTHONY<br />
ORDER OF MERIT<br />
Page 7<br />
ACC & IRD 15%<br />
WITHHOLDING TAX<br />
page 6<br />
SEXUALITY<br />
INTIMATE MATTERS<br />
Page 12<br />
LAKE BRUNNER RACE<br />
HANDCYCLING 130km<br />
Page 19
CONTENTS<br />
EDITORIAL TEAM<br />
2 Contents<br />
3 Letters<br />
4 NZST (Library)<br />
5 Film Review<br />
6 NZST (ACC & IRD)<br />
7 Order of Merit<br />
10 City Councils<br />
12 Sexuality<br />
14 IRD<br />
16 Rehabilitation<br />
paul stafford<br />
claire freeman<br />
Hamish ramsden<br />
Yes the time has come for change. I would like<br />
to take this opportunity to say to our members<br />
I hope you enjoy the new full colour look of the<br />
Spinal Network News. A lot of hard work has<br />
gone into this magazine from our committee and<br />
writers. Claire Freeman who is the designer for the<br />
NZST has put a lot of effort and thought into the<br />
design, layout and illustrations of this new look.<br />
Over the past two months there has been a large<br />
amount of correspondence between many of our<br />
members about the 15% withholding tax. This has<br />
been very encouraging, seeing the networking in<br />
action between members and the Trust<br />
Hi, my name is Claire Freeman and I am part of this<br />
fantastic team of fellow writers and researchers for the<br />
Spinal Network News. I moved to Christchurch from<br />
Wellington a couple of years ago due to a ‘too good<br />
to miss’ work opportunity. I am employed full time<br />
by the Canterbury District Health Board as a graphic<br />
designer, and I also work for the NZ Spinal Trust. I<br />
live with my babies Meesa, Lena and Georgie (dog<br />
and cats) and am passionate about people, painting,<br />
studying towards my Masters, volunteer work as a<br />
Youthline counsellor, reading and writing.<br />
I was delighted when Paul asked me to be on the editorial<br />
committee for the Spinal Network News as I see it as a<br />
great information source plus a very important forum<br />
for people to discuss their issues. As a C5/C6 tetraplegic<br />
since 1994 I have been involved with many things but<br />
currently I am the facilitator of the patient education<br />
groups at the Burwood spinal unit, on a couple of<br />
committees, doing some volunteer admin work, a parttime<br />
writing course at Canterbury University and trying<br />
to keep up with my teenage daughter who looks at me<br />
blandly and says “Dad, you just don’t understand!”.<br />
18 Web<br />
19 Sports<br />
CONTRIBUTING<br />
WRITERS<br />
Bernadette Cassidy<br />
John Bourke<br />
Richard Smaill<br />
Hamish Ramsden<br />
Ross Livingston<br />
Keren Rickerby<br />
Andrew Hall<br />
Keith Jarvie<br />
Claire Freeman<br />
Julian Verkaaik<br />
Fleur Hansby<br />
graham tapper<br />
john bourke<br />
Founding member of the NZ Spinal Trust with 43<br />
wheelchair years experience as an advocate for those<br />
with disabilities. Currently I am the Christchurch<br />
Total Mobility Chairperson, a member of the CCS<br />
Disability Advisory Group and a board member<br />
of the Hanmer Springs Forest Camp Trust. My<br />
interests include walkways, parks and reserves,<br />
accommodation issues and access to the Christchurch<br />
Tram, our buses and beaches. I would also like to see<br />
equity between MOH and ACC clients.<br />
I was really stoked when Paul asked me to join the<br />
team at the Spinal Network News - being the new kid<br />
its great to have this opportunity to contribute and be<br />
involved with the great bunch of people on the editorial<br />
team. I’m currently living in Nelson and studying<br />
extramurally through Massey University. I’m a C4/C5<br />
tetraplegic following a surfing accident in Indonesia in<br />
June 2005. Before my accident I spent my time mostly<br />
in Wellington planning various adventures, something<br />
I intend to keep doing - and writing stories about! In<br />
the future I am hoping to be involved with proactive<br />
research that deals with both the physical and emotional<br />
challenges that people with SCI have to face.<br />
2<br />
SPINAL NETWORK NEWS is published by the NZ Spinal Trust<br />
Send your contributions to: 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: paulstafford@burwood.org.nz or info@nzspinaltrust.org.nz<br />
Web: www.nzspinaltrust.org.nz<br />
DISCLAIMER: The views expressed in SPINAL NETWORK NEWS are<br />
those of its contributors. They do not necessarily represent the opinion<br />
of the members of the Editorial Committee or the policies of the New<br />
Zealand Spinal Trust.<br />
DESIGN & LAYOUT: Claire Freeman<br />
PRINTER: Purse Willis & Aiken Ltd.
OPINION<br />
I read Robert Stubbs article on his experience in China<br />
with concern. I appreciate that drowning men clutch at<br />
straws but what Robert is talking about is hype and hope,<br />
not evidence. Stem cell treatment has not been proven to<br />
either work or be safe. The only beneficiaries are the stem<br />
cell clinics.<br />
I broke my back in 1977 in the old days of Ward 13B.<br />
After 32 years in a chair, I have seen and heard a lot about<br />
solutions and “cures” to spinal injury and neurological<br />
damage. While there is no doubt that the treatment of<br />
spinal injury during both the acute and rehabilitation<br />
stages have improved outcomes, none of the “cures” has<br />
come to anything of consequence. That is not for a lack<br />
of effort, belief or hope – it is because the human body is<br />
incredibly complex. People can deny and hope all they like<br />
but that does not change the simple facts of physiology<br />
and science.<br />
In 1977, there was no “cure”, and even basic information<br />
on rehabilitation was difficult to source. In 2009, the<br />
internet provides an unbelievable source for anyone<br />
wanting to know almost anything about disability and<br />
treatment. I would be surprised if the vast majority of<br />
newly disabled people did not go on the net to see what<br />
may be available and ways they might improve their<br />
situation. However, let’s keep things in perspective. You<br />
simply cannot believe a huge amount of what is on the<br />
net! Whether it is conspiracy theories, incompetence,<br />
criminality, insanity or bullshit (bovine scatology) there are<br />
ridiculous and completely unsubstantiated claims made<br />
all the time: Is your willy too small? Buy my miracle pill!<br />
That is not to say you cannot believe anything, but take<br />
what’s being claimed with a little more than a pinch of salt,<br />
especially if someone is making money out of it.<br />
I’m a sceptic by nature. I like to see evidence of claims in an<br />
issue like commercial stem cell treatment. Moreover, when<br />
I say “evidence”, I mean robust, peer-reviewed studies<br />
that back the claims made. Unreferenced anecdotes<br />
are not robust and it is not science! If anyone wants a<br />
simple, easy-to-follow and understandable guide to how<br />
science progresses and how to spot sham treatments, the<br />
best book I’ve found is Bad Science by Ben Goldacre.<br />
Alternatively, you could just go to badscience.net.<br />
A question that we should all ask ourselves is why<br />
“alternative” treatments for serious issues like cancer<br />
or spinal injury are always in places like Mexico, India<br />
or China. The obvious answer is because they are not<br />
allowed to be offered in western countries because they<br />
are experimental, unproven and potentially dangerous.<br />
The touters of such treatment will suggest some sort<br />
of conspiracy of silence or objection by mainstream<br />
medicine. I think that is a simple self-serving excuse<br />
for which there is no evidence. However, don’t we love<br />
a conspiracy, especially if it feeds into what we’d like to<br />
believe? Whether the people providing these “services”<br />
are genuine, naive or charlatans, I do not know. What I do<br />
know is that none of them has produced any robust, peerreviewed<br />
data to demonstrate the efficacy of what they do.<br />
I’ve personally had friends and relations who have gone to<br />
Mexico for “alternative” cancer treatment after they had<br />
been told in New Zealand that they were terminal. In each<br />
case, it cost them and their families a small fortune and, in<br />
each case, it did them no good at all. They felt they owed<br />
it to themselves and their loved ones to take any chance<br />
offered for a cure and I understand that. But exploiting the<br />
dying and the desperate is what the evidence says is really<br />
going on here. The only positive thing such alternative<br />
providers offer is hope which is what lotto players have.<br />
The difference with lotto of course is that despite weekly<br />
odds of 3.8 million to one, someone actually will win.<br />
The Sunday show on TVONE on 19 July had a segment<br />
on stem cell treatment. While it looked specifically<br />
at blindness and MS rather than SCI, it provided an<br />
informative examination of the claims. The parents of a<br />
blind child (who attended Beike Biotech) were convinced<br />
their daughter had recovered some sight, but the objective<br />
tests carried out showed that there had been no visual<br />
improvement. Dr Larry Tychsen of the St Louis Children’s<br />
Hospital states that of the children having stem cell<br />
treatment for blindness, “there was no evidence of any kind<br />
of visual improvement – not even temporary”. He further<br />
states, “…I’m not sure (the parents) want to see they have<br />
wasted their time and money” when addressing why the<br />
parents would believe there was an improvement.<br />
Dr Neil Scolding, an international expert on MS and<br />
stem cells, is unaware of any proof anywhere in the<br />
world that stem cell treatment had any positive impact<br />
on MS. The programme’s conclusion was that stem cell<br />
clinics recognise that there is a vulnerable population<br />
that conventional medicines and treatment do not have<br />
a cure for. These clinics play on the vulnerability of such<br />
people who are disabled and prepared to travel and, most<br />
importantly, have money.<br />
That said, I do not doubt that stem cell treatments<br />
show good theoretical and laboratory promise. I’m<br />
looking forward to the Dunedin trial proceeding. I hope<br />
it works and I’m sure there will be no lack of volunteers.<br />
Nevertheless, the Dunedin trial will be properly conducted,<br />
scientifically based and ethics approved. The results will<br />
be published and other researchers will be able to review<br />
the methodology and outcomes. It will not be secret and<br />
anecdotal as it is at Beike Biotech and all those other<br />
commercial treatment clinics.<br />
Neil Tonkin<br />
andrew hall<br />
3
ANTHEA GUNNER - CHAMPION HORSE RIDER<br />
NZST<br />
When your life is turned upside down by a spinal cord<br />
injury how do you cope? There are so many changes to<br />
make, challenges to overcome without even thinking of<br />
your dreams.<br />
But that is just what Anthea Gunner did after a paddock<br />
accident with her horse in January 2006 left her a paraplegic<br />
(T10/11 complete). Not content to settle for just existing<br />
with her new “wheels” she chose to challenge herself to<br />
succeed on the world stage with what else? A horse!<br />
“She’s mad” was often heard along the halls of the<br />
Burwood Spinal Unit during her four month stay. It took 9<br />
weeks to convince physio’s and doctors that riding was a<br />
good idea and finally she was allowed to go to Westwood<br />
Stables for her first post accident ride.<br />
Barney was the sort of horse that disabled people dream<br />
of, beautiful, gentle and very well behaved. He was used<br />
to spasming legs, arms, bodies, riders of all abilities and<br />
disabilities fought to have him as their mount. Barney<br />
instilled mountains of confidence in Anthea, and a marked<br />
difference was visible on her return to the unit – it was like<br />
she was alive again.<br />
That ride sowed the seed for Anthea, she was now, after<br />
some internet searching, determined to get back riding<br />
and aim for a Paralympic Gold Medal. Upon leaving<br />
Burwood Anthea continued to ride, as well as returning<br />
to work and adjusting to life from a wheelchair outside the<br />
hospital.<br />
In October 2007 the competitive spirit kicked in, and<br />
Anthea started looking for a suitable horse to get back<br />
into Dressage. This is never an easy task – especially<br />
when you have a disability as you need to be much more<br />
specific in what you are looking for. Fortunately Anthea<br />
found Mask, a 6 year old Skewbald gelding who upon<br />
meeting her, promptly put his head in her lap and asked<br />
for a cuddle. He was kind and obliging to ride and handle<br />
and was not at all concerned by the wheelchair.<br />
It was a match made in heaven and Mask arrived in<br />
Christchurch merely 2 weeks after that first meeting.<br />
Now nearly 2 years on after a fine balancing act of work,<br />
training and competing Anthea and Mask are on track to<br />
achieving the first step towards their Paralympic goal.<br />
But it is a long and expensive road to equestrian success,<br />
they are now faced with having to travel to Werribee,<br />
Australia for their first big test, the Para Equestrian<br />
qualifying competition in December for next years World<br />
Equestrian Games.<br />
In order to get to Australia they need to raise $15,000<br />
for flights, accommodation, and transport to and from<br />
Christchurch, via Auckland as well as entry fees, food<br />
and transport in Australia. If you would like to sponsor<br />
Anthea and Mask or make a donation to help them to<br />
reach their goal please contact Anthea at anthea.gunner@<br />
courierpost.co.nz, see their new website<br />
www.parageegee.com<br />
or phone 021 137 1988 for more information.<br />
4
A DRUG FOR THE FUTURE?<br />
I am a C6/C7 incomplete tetraplegic diagnosed with<br />
Brown-Séquard Syndrome. I had my accident in January<br />
2006 and spent the following five months in the Burwood<br />
Spinal Unit. By the time I was in a position to leave, I had<br />
begun to walk short distances with the aid of crutches.<br />
I continued to make small improvements to my walking<br />
with a mixture of physiotherapy, acupuncture, massage<br />
and regular exercise, together with a stubbornness of not<br />
wanting to use my manual wheelchair.<br />
In early <strong>2008</strong>, I was back in Burwood having a review of<br />
my medication with Rick Acland. We agreed to a couple<br />
of changes and at the same time he handed me three<br />
sheets to take away and read on a new drug Fampridine<br />
(4-AP) that was undergoing trials in America and Canada<br />
but was not yet approved by the FDA (US Food & Drug<br />
Administration).<br />
After reading the material given to me, doing some<br />
research on the internet and discussing the drug with<br />
another person taking it here in New Zealand, I decided<br />
to give it a trial that started at the beginning of September<br />
<strong>2008</strong>.<br />
So what is 4 A-P and what does it do?<br />
4 A-P is a drug that improves the function of surviving<br />
nerve fibres in your spinal cord. Most people with spinal<br />
cord injury still have some connections, but many have lost<br />
their myelin (an insulating material) and cannot conduct<br />
signals well. 4-AP allows these demyelinated axons to<br />
send signals. Rick suggested that due to the nature of my<br />
injury I would benefit from taking this drug.<br />
4-AP works only while it is taken, and the effect goes<br />
away within hours after you stop. It is not an innocuous or<br />
miraculous drug. Indeed, it is a powerful substance with<br />
beneficial effects on spinal cord injury but with complex<br />
effects on the body; it also has interactions with many<br />
drugs.<br />
What are the effects of 4-AP?<br />
4-AP’s effects can range from reduced spasticity and<br />
pain, increases in strength and, in some, walking. The<br />
worst effect is seizures, but the risk is low when dosage is<br />
kept lower than 40 milligrams per day.<br />
When can you expect to start feeling the effects of 4-AP?<br />
The beneficial effects of 4-AP depend on the symptoms<br />
and the injury. Sensory improvement should be fairly<br />
rapid (within hours), while motor function may take days<br />
or weeks to appear. Spasticity changes should be fast,<br />
but bowel and bladder improvements frequently occur<br />
within days. For some people, 40 milligrams per day may<br />
not be sufficient, but if you are not seeing any beneficial<br />
effects within four weeks at 40 milligrams per day, I<br />
suggest discontinuing the drug until the sustained-release<br />
formulation is available.<br />
Does 4-AP have side effects?<br />
At doses of up to 40 milligrams per day, oral immediaterelease<br />
formulations of 4-AP appear to have few side<br />
effects. Sustained-release formulations may allow higher<br />
doses with fewer side effects.<br />
What are the long-term effects of 4-AP?<br />
The long-term effects of 4-AP have not been systematically<br />
studied. Some people, particularly in the multiple sclerosis<br />
community, have taken the drug for many years. The drug<br />
does not have carcinogenic activity in animal studies,<br />
and there has been no report of long-term deleterious<br />
consequences of the drug on the heart, liver or kidney.<br />
So what have been my experiences with 4-AP to date?<br />
Rick started me on 10 milligrams, building up to 40<br />
milligrams on a daily basis. I have now been taking 4-AP<br />
for 10 months.<br />
I have had no adverse side effects and noticed early on<br />
an improvement to my walking. I no longer use the elbow<br />
crutches but a single walking stick for getting about. I do<br />
still use my manual wheelchair for longer distances such<br />
as shopping, etc. The chair spends much of the time<br />
sitting in the back of the car.<br />
In the last couple of months I have moved to a two-storey<br />
house and have no difficulty in getting up and down the<br />
stairs. I now also work from home and have set up my<br />
office upstairs. Back in July 2006 I certainly would not<br />
have considered looking at such a property – this drug<br />
has definitely contributed to the further improvements I<br />
have made over the past 10 months.<br />
So is there a downside?<br />
Well, yes and no. As the drug is not currently approved by<br />
the FDA, the drug is therefore not approved here in New<br />
Zealand. In turn, that means for me that at present it is not<br />
funded by ACC. The annual cost is around $1,000, so not<br />
everyone may be able to afford it.<br />
• A decision regarding whether or not 4A-P will be<br />
approved is still some time away. However, the FDA in May<br />
2009 accepted for filing and granted priority review for the<br />
New Drug Application (NDA) submitted for Fampridine-<br />
SR (4-aminopyridine or 4-AP) sustained-release tablets.<br />
In laboratory studies, Fampridine has been found to<br />
improve impulse conduction in nerve fibres in which the<br />
insulating layer, called myelin, has been damaged. Drugs<br />
granted priority reviews have a six-month review clock as<br />
compared to a ten-month standard review. Only time will<br />
tell when funding for this drug becomes available here.<br />
an Beattie<br />
5
NEW TECHNOLOGY<br />
There are many examples of technology helping those with<br />
disabilities in contemporary society. Electric wheelchairs<br />
can detect slope and adjust accordingly, while others<br />
can stand up and provide access to benches and tables.<br />
Computers are designed with various programs such as<br />
sticky keys, while more advanced computer programs like<br />
Dragon offer verbal access. In fact neurologists are now<br />
experimenting with methods that read neural activity and<br />
apply it to the operation of computers and even artificial<br />
limbs.<br />
I have had several experiences with various pieces<br />
of technology designed to help people with physical<br />
disabilities this year. The technology that I have<br />
experienced this year is mostly concerned with physical<br />
mobility. They include a stair climber, e-motion wheels, and<br />
the RT-300 FES bike I received last year. I’ve put together<br />
a few comments on each piece of equipment and a link<br />
for more information on each one. I must remark that I am<br />
not employed by, and have no investment in any of these<br />
companies or products.<br />
Stair track machine<br />
I was introduced to the stair track machine in Sydney last<br />
summer. My girlfriend Corrin and I were planning to visit<br />
her family and had decided that if we could somehow<br />
negotiate twelve rather large steps before the front door,<br />
it was feasible to stay at her parent’s house. Luckily for<br />
us, Corrin’s dad had found a company that hired the stair<br />
track machine and organised to hire it for the duration<br />
of our holiday. After a long day traveling from Nelson to<br />
Sydney we arrived at the top of those twelve dreaded<br />
stairs. I put my immediate future in the hands of fate and<br />
told Corrin’s parents that I had been treating their beloved<br />
daughter really well as they locked my wheelchair to the<br />
machine and sent me down the stairs. I was pleased to<br />
find it got me to the bottom of the stairs efficiently and in<br />
one piece.<br />
The technique that this machine uses to get somebody in a<br />
wheelchair down (and up) stairs is really quite remarkable.<br />
The base is a strong rubber track that grips each stair as<br />
it travels up and down them. The back of the wheelchair<br />
attaches to a vertical column that extends from the base.<br />
A secure locking system attaches to the frame of the<br />
wheelchair and then leans back so you stay level as you<br />
travel up and down the stairs. A person is then needed to<br />
guide the machine by operating the controls, which do not<br />
engage until the wheelchair is securely locked in place.<br />
It’s hard to picture but photos should explain the set up<br />
more clearly.<br />
Although we used my wheelchair the first two times,<br />
we decided switched to the wheelchair that had been<br />
supplied with the stair climber. This was because the stair<br />
climber attaches to the push handles on the wheelchair,<br />
and as mine were a little unstable, we decided to swap<br />
chairs. There was no denying that this machine was<br />
scary the first couple of times we used it, however after<br />
a while we realised it really was very safe and secure. We<br />
used the stair climber at least twice a day for 10 days<br />
and had no troubles. We sourced the stair climber from<br />
www.totalmobility.com.au and would recommend them<br />
to anyone traveling to Sydney. They also can supply<br />
wheelchairs, hoists, beds and more. I’ve tried to locate<br />
one in New Zealand but have had no luck – if anyone has<br />
any information, please let us know.<br />
E motion wheels<br />
E motion wheels have been around for a while and attach<br />
to manual wheelchairs just like regular wheels. Unlike<br />
regular wheels though, e motion wheels have a built in<br />
motor that kicks in when the user applies pressure to<br />
the push rims. So the wheels do a majority of the work.<br />
Aimed at individuals that have limited arm strength, e<br />
motion wheels can provide increased independence by<br />
allowing their user to push over new terrain and push<br />
longer distances on smooth terrain.<br />
During a wheelchair assessment this year I trailed<br />
the e motion wheels for two days and I despite my<br />
initial skepticism, I really enjoyed them. As I have C4/5<br />
tetraplegia, and my right side is much weaker than my left<br />
side, I’m quite limited in where I can independently push<br />
my manual chair. For example carpet and gravel are out of<br />
the question. However with the e motion wheels attached,<br />
carpet provided no challenge and I could even push down<br />
our gravel driveway! We excitedly drove into town to test<br />
out other environments. At the supermarket I happily<br />
powered my way across the car park and into the building<br />
6
“I left Corrin in my dust several times and scared<br />
young children and the shelf stacking staff with my<br />
new found speed and subsequent unpredictability”<br />
use of this bike can increase muscle tone, muscle range,<br />
circulation, and bone density.<br />
Throughout <strong>2008</strong> I unfortunately experienced ongoing<br />
bladder problems which involved increased spasm and<br />
dysreflexia. This prevented<br />
me from establishing a good<br />
routine on the bike. However<br />
with my bladder behaving this<br />
year I have been consistently<br />
using my RT300 bike. After<br />
six months of using my bike twice a week I have noticed<br />
definite changes.<br />
Firstly my legs are bigger. I have more muscle tone on my<br />
glutes, hamstrings, and quads. Secondly my spasm has<br />
decreased, as has my feelings of ‘pain’ that accompany<br />
particularly bad days of spasm. In fact, after a session my<br />
legs feel very relaxed and my spasm/pain has decreased<br />
considerably, this continues for the rest of the day. The<br />
bike also has a very positive effect on my digestive system,<br />
helping me to stay regular. Combined with a good diet<br />
this helped me overcome the discomfort associated with<br />
irregular and uncooperative bowel routines.<br />
So despite an awkward start, my experience of using the<br />
RT300 has been great so far. I find it is really accessible as<br />
I can stay in my wheelchair and complete a whole session<br />
within an hour. Combined with the benefits of reduced<br />
spasm, and increased muscle tone and circulation, the<br />
RT300 is a great way to stay fit and keep me in shape.<br />
However the bike is very expensive at around US$15,000,<br />
and not covered by ACC. I was fortunate enough to receive<br />
The RT300 through fundraising and donations. For more<br />
information visit www.restorative-therapies.com<br />
totally unassisted. I then narrowly missed a stack of wine<br />
bottles as I gave ‘speed 2’ a crack, and thus decided<br />
‘speed 1’ may be a better choice in the meantime. I left<br />
Corrin in my dust several times and scared young children<br />
and the shelf stacking staff with my new found speed and<br />
subsequent unpredictability. I finished by pushing myself<br />
across the car park back to the van independently.<br />
E motion wheels can be disengaged and pushed manually,<br />
although the weight of the motor makes them quite heavy.<br />
They are sensitive to fine adjustments also. Each wheel<br />
can be programmed to different speeds, which can benefit<br />
lop-sided individuals such as myself. The travel/braking/<br />
reverse settings are also adjustable, while a remote control<br />
can also be used to switch between speeds and turn the<br />
wheels on and off. E motion wheels come with a battery<br />
charger and a full charge gets around 25km of pushing<br />
power. For more information see http://www.invacare.<br />
co.nz<br />
RT – 300 FES Bike<br />
I wrote a piece on this bike in the Spinal News (April<br />
<strong>2008</strong>) and I thought I’d use this opportunity to provide<br />
an update on how it has been for me. To quickly recap,<br />
the RT-300 uses functional electrical stimulation to<br />
stimulate legs muscles which in turn power the pedals<br />
without motor assistance. Manufactured in the USA by<br />
Restorative Therapies, the RT300 promotes activity<br />
based rehabilitation. Research has found that consistent<br />
Jonny Burke<br />
7
VINO FOR A GOOD CAUSE<br />
I’ve never been a big wine connoisseur, my knowledge<br />
stretches to the colour – red, white and pinkish. It’s not<br />
something I generally make public, after all, one should<br />
have at least an understanding of the different types<br />
such as a pinot noir and chardonnay. When trawling the<br />
supermarket isles, I don’t even look at the colour half the<br />
time, it’s more the price tag I’m interested in, so when<br />
I volunteered to go grape picking on Anne and Jims<br />
vineyard, the hairs on my arms stood to attention as my<br />
body toiled with the prospect of being found out as an<br />
‘ignoramus’.<br />
I had great intentions of getting out a book instructing me<br />
on the different wines, but life and an aging mind got in the<br />
way, and I clean forgot. After a relaxing few days at Lake<br />
Tekapo, I headed down to the Waitaki Valley, a valley that<br />
although has dams blocking up chunks of the river, still<br />
possess a beauty fit for a tourism NZ brochure.<br />
I were greeted by two deliriously happy dogs upon arriving<br />
at Anne and Jims place, and after dropping my bags<br />
off at the house, we made our way over to the vineyard<br />
situated a little way down the road. There, Anne set about<br />
garnishing the tables<br />
with an incredible<br />
feast, and soon a<br />
hungry hoard of grapepickers,<br />
most of whom<br />
were volunteers were<br />
slurping and chomping their way through the mountains<br />
of cakes, soups and other home-made delights.<br />
After a few polite introductions, we all made our way<br />
back to the vineyards and started the picking. The grapes<br />
themselves were small, but extremely flavoursome and it<br />
was hard not to play the ‘one for you, one for me’ game<br />
with myself. As the vineyard is set against a hill, it was<br />
an easy roll down. Once at the bottom, we decided that<br />
instead of someone pushing me to the top of the vines, I’d<br />
have a ride on the tractor.<br />
I felt like Anne of Green Gables, riding along with my<br />
hair blowing in the breeze, the blub blub of the tractor<br />
an essential ingredient in what was a delicious mix of<br />
fresh farm goodness. The picking itself was a lot of fun,<br />
and everyone chatted away whilst snipping at the vines.<br />
I had also taken my little dog Meesa with me, and she<br />
was in doggy heaven. She’s extremely sociable and was<br />
determined to introduce herself to all the pickers. Even<br />
though the weather had not been amazing whilst we<br />
picked grapes, the beauty of the valley was evident, and<br />
the view from the vineyard that looked over the plains and<br />
down to the sprawling river was truly spectacular.<br />
As the pickers headed up the top vines, Anne took me<br />
on a trip around the property. It was great to great to see<br />
whole area, including the well fashioned stone wall along<br />
one side of the vineyard, built by an enigmatic man in his<br />
70’s – must be the fresh air down here? After a second<br />
round of tasty treats for afternoon tea, people headed<br />
down to the little shed where the main meals were served.<br />
Everyone was abuzz with a good days hard work, although<br />
I’d go so far as to say picking grapes nearly seems to be<br />
more fun than work.<br />
There was a large turnout of volunteers, and it was a<br />
credit to Anne and Jim and their place within the Kurow<br />
community. A few of the crowd ended up coming back<br />
to Anne and Jims for a yummy hearty stew, and a tasty<br />
introduction to their wine collection. After a long day, it was<br />
nice to sit down and partake in some good conversation<br />
with an interesting bunch of people. As ever, Anne and<br />
Jim’s energy and<br />
hospitality astounded<br />
me. I mused over<br />
whether to inform<br />
them I thought they<br />
would make a killing<br />
as bed and breakfast proprietors. With their modest, but<br />
extremely comfortable, sun-drenched home, it was very<br />
tempting to kick off the shoes and take up residency on<br />
the couch.<br />
Picking grapes on the vineyard had been a great experience,<br />
and meeting such a fantastic group of volunteers was<br />
heartening, especially as the money raised was going<br />
towards one of New Zealands most deserving charities –<br />
The New Zealand Spinal trust.<br />
Well done to Anne and Jim for their incredible hospitality,<br />
their culinary skills, their ability to make sumptuous wine<br />
and their generosity. I’m still extremely ignorant with<br />
regards to types of wine, however, given a few more days,<br />
I’m sure I’d have at least been able to tell a Riesling from<br />
a chardonnay. For anyone given the chance to go grape<br />
picking, I say go for it, it’s goodt fun and one that is likely<br />
to become a ‘must do kiwi experience’.<br />
There was a large turnout of volunteers,<br />
and it was a credit to Anne and Jim and<br />
their place within the Kurow community.<br />
Claire Freeman<br />
8
Ostler Vineyard’s Jim Jerram and Anne Sinnott presenting a cheque to the “Connecting People” co-ordinator<br />
Debz Mitchell. Andrew Hall NZST CEO on the left and Richard Smaill NZST Chairman on the right.<br />
9
10<br />
AUCKLAND
11
ROBIN, THE ROWER TO WATCH FOR<br />
Adaptive rowing started in Seville in 2002 at the World<br />
Rowing Championships and was accepted into the<br />
Paralympics in Beijing in <strong>2008</strong>.<br />
In 2007, the Union Rowing Club, Christchurch, started<br />
New Zealand’s pilot programme for adaptive rowing and<br />
in May 2009 presented to the Rowing New Zealand board<br />
a blueprint for rolling out adaptive rowing around the<br />
country.<br />
I was discovered by this pilot programme when I joined<br />
this new sport to try a relaxing Sunday row. My interest<br />
developed from this to a personal challenge to learn<br />
good rowing skills and techniques. As adaptive rowing is<br />
relatively new internationally, there is very little experience<br />
or written material to call on for advice. It was a learning<br />
and development process for both coach and rower.<br />
Adrian Henning, the vice-captain of the Union Rowing Club,<br />
has a passion for rowing and was enthusiastic about taking<br />
on the adaptive coaching role. With time and patience,<br />
Adrian and<br />
I worked<br />
through a<br />
plethora of<br />
issues to<br />
develop a<br />
t e c h n i q u e ,<br />
style and rig<br />
– issues as<br />
simple as seat<br />
a d j u s t m e n t ,<br />
s t r a p<br />
placement and<br />
a d j u s t m e n t<br />
to provide<br />
a d e q u a t e<br />
s u p p o r t<br />
and avoid<br />
friction sores,<br />
therefore the<br />
development<br />
of the chest<br />
strap and<br />
leg strap.<br />
The rowing<br />
technique is of course largely based on standard rowing<br />
technique, a starting point that Adrian knows.<br />
Adrian encouraged me to attend the South Island Rowing<br />
Championships at Lake Ruataniwha in Twizel in February<br />
<strong>2008</strong>. This was a great experience as Adrian is also a<br />
rowing coach for Christ’s College in Christchurch. The<br />
Christ’s College headmaster, coaching staff and parents<br />
adopted coach and rower, accommodating and feeding<br />
us for the duration. A number of the Christ’s College boys<br />
would take time from their weekends to come down to<br />
Kerrs Reach to help Adrian with setting up and launching<br />
both our boats.<br />
The South Island Championships event was the first<br />
opportunity to experience race conditions on a proper<br />
course: the official start, rowing in lanes and giving it your<br />
all for 1,000 metres – not to mention the heart palpitations<br />
before the race! The standard course for able-bodied<br />
rowers is 2,000 metres; however, an able-bodied rower<br />
uses legs for 80% of the work, arms and body do the rest<br />
with unrestricted movement. To expect the same work<br />
while seated, strapped in a fixed, upright position using<br />
only arms and shoulders is a huge demand.<br />
After the South Island Championships came the view<br />
to future events. We looked at what times were being<br />
achieved overseas as there were of course no local times to<br />
strive for. We were still about a minute off the world record<br />
time so clearly there was a lot more work to be done! We<br />
looked at possible areas we could improve. The obvious<br />
ones were technique, strength and stroke rate, but then<br />
we started looking at the rig. Our stroke arc was very short<br />
compared to conventional rowers – 40 degrees compared<br />
to about 70 degrees. Therefore, we were rowing twice as<br />
fast to achieve a reasonable speed. We figured if we could<br />
increase the arc, we would also be able to slow down<br />
the stroke rate to travel the same distance. Technically,<br />
we could not modify the boat itself but we could modify<br />
the rig. Adrian did<br />
the research to<br />
determine how to<br />
increase the arc.<br />
I made a mockup<br />
of a bracket<br />
to bolt to our<br />
existing rig, which<br />
would change<br />
the position of<br />
the pivot point of<br />
the oars (known<br />
as gates). The<br />
club captain had<br />
access to material<br />
and equipment<br />
to fabricate<br />
the brackets.<br />
C a n t e r b u r y<br />
R o w i n g<br />
A s s o c i a t i o n<br />
donated a pair of<br />
old oars for us to<br />
cut down to suit<br />
our new set-up.<br />
It took some getting used to, but almost immediately we<br />
saw an increase in speed. With a couple of months to train<br />
with this new rig, which actually looked quite agricultural,<br />
we were ready for the Canterbury Rowing Championships<br />
in Twizel in January 2009. We were able to knock more<br />
than half a minute of our previous time and impress<br />
Rowing New Zealand enough for them to approve funding<br />
for a new rigger.<br />
A month later, with our new rigger, we attended the New<br />
Zealand Championships, also held at Twizel. Here we<br />
achieved a time 93% of the then world record. I became<br />
the first New Zealand champion adaptive single sculler<br />
and was invited to trial for the New Zealand elite squad.<br />
In March this year we attended trials at Lake Karapiro in<br />
Cambridge for the Rowing New Zealand elite team. The<br />
weather was atrocious, raining and blowing. However, the<br />
weather would struggle to put a dampener on the feeling of<br />
being among some of New Zealand’s top athletes – Mahe<br />
12
Drysdale and Emma Twigg, to name a couple. It almost<br />
did not happen due to the weather, but a small window of<br />
opportunity allowed me to row a time good enough to be<br />
picked for the top team.<br />
Now the journey begins, rowing internationally with the<br />
best in the world and with London 2012 firmly in our sights.<br />
There is a large amount of history about to be written!<br />
Adaptive rowing<br />
Adaptive rowing has three classifications:<br />
• Arms/shoulders<br />
• Trunk/arms<br />
• Leg/trunk/arms<br />
The international events currently are:<br />
• Men’s arms/shoulders, single scull<br />
• Women’s arms/shoulders, single scull<br />
• Mixed trunk/arms, double scull<br />
• Mixed leg/trunk/arms, four<br />
• Adaptive races are 1,000 m long<br />
• It is the boat and the coaching techniques that<br />
are adapted<br />
• The arms-only single sculls and trunk/arms<br />
double sculls are equipped with a seat, which<br />
offers ‘postural support’ to those individuals with<br />
compromised sitting balance (for example, spinal<br />
cord injury, cerebral palsy). This ensures that the<br />
upper body is supported and kept in a fixed<br />
position<br />
• Smaller boats are equipped with buoyancy<br />
devices called pontoons, which act as stabilisers<br />
attached to the boat’s riggers, providing<br />
additional lateral balance<br />
Robin Tinga<br />
13
CAN’T WALK. CAN FLY. THE WORLD’S FASTEST<br />
PARAPLEGIC.<br />
Australian Dale Elliott recently made the first paraplegic<br />
solo skydive in New Zealand, jumping on 27 June in<br />
conjunction with the New Zealand Skydiving School at<br />
Pudding Hill.<br />
Dale, who is a professional motivational speaker and “sitdown<br />
stand-up” comedian, then gave a ninety-minute<br />
long motivational talk to students at the skydiving school<br />
– the only place in the world where people can study full<br />
time and achieve a diploma in skydiving.<br />
“It was an opportunity to inspire them and give them some<br />
lessons on what I’d learnt about flying as pilot, skydiving,<br />
and safety.”<br />
An appearance on the morning show on TV ONE followed<br />
in Wellington before Dale went to Auckland to give two<br />
talks for New Zealand Aerosports. The first was a talk<br />
for about 40 children and their families associated with<br />
Project K.<br />
“There was skydiving paraphernalia lying around and I<br />
showed my video – it was fun. I love talking to kids. All<br />
my life I’ve enjoyed it and before my accident I coached<br />
athletics and football and had been doing motivational<br />
courses with youth.”<br />
The skydiving community in Auckland was invited to<br />
Dale’s second talk. From there, it was on to Rotorua,<br />
where Dale flew in the wind tunnel: “It was really cool and<br />
it has helped me develop my freefall skills.”<br />
Taupo company Deepseed organised for Geoff Mundy, a<br />
skydiving instructor and coach with some 18,000 jumps<br />
under his belt, to travel to meet Dale. “He’s one of the<br />
best coaches in the world! It was unbelievable. I got some<br />
great tips from him.” Afterwards, Dale gave a talk to staff<br />
and skydivers at Taupo Airport but was sadly unable to do<br />
any jumps that day due to weather conditions – he hopes<br />
to return in summer to jump.<br />
A T10 complete, Dale had been a full-time pilot with 2,000<br />
hours of experience and had wanted to fly from the time<br />
he was a child. In December 2002, at the age of 26, he<br />
had a motorbike accident, losing not only his ability to<br />
walk but the ability to get into a plane and to operate the<br />
pedals. He is working on fitting some hand controls to the<br />
aeroplane at the drop zone he skydives at so he can fly<br />
the skydivers up for jumps.<br />
By the time he had his accident, Dale had flown for 10<br />
years and had dedicated his life to flying. He had also<br />
flown planes at the local drop zone for skydivers and had<br />
become interested in sky diving himself. He trained and<br />
completed 37 jumps able-bodied.<br />
He spent two months in hospital. “It should have been<br />
five but I really hated it. Being in hospital held me back in<br />
every single way.” Being a driven, go-getter personality,<br />
he adds, “I have to actually do something otherwise I’ll go<br />
nuts … I’ve never slowed down in my whole life.”<br />
He was at work within five days of leaving hospital, doing<br />
forty-hour weeks at his old company. He got his driver’s<br />
licence back after one lesson (it usually takes eight) and<br />
bought an automatic car.<br />
“I had lost confidence; before the accident I was happy to<br />
make an idiot of myself and I had a good sense of humour.<br />
I wanted to get my life back.”<br />
It wasn’t only the “falling through the sky” that he missed<br />
– it was the sense of friendship and “mateship” in the<br />
skydiving community.<br />
“Skydiving seemed an unbelievable dream. Then I thought,<br />
what do I need my legs for when I skydive? Walking to the<br />
plane, walking back once on the ground. I came up with<br />
15 things then came up with a solution for each one.”<br />
Dale has no control over his legs: “In freefall I can’t have<br />
my legs going all over the place at 200 km an hour.” He<br />
came up with the idea of carbon fibre braces to hold his<br />
legs in places, using the aircraft engineering knowledge<br />
he had gained during studies in his early twenties. To do<br />
this, he made plaster moulds of his legs to get the braces<br />
right. They keep his legs bent at the correct angles for<br />
freefall.<br />
Landing presented problems too. As Dale’s legs can’t<br />
take the impact – they would collapse and there is also<br />
a good possibility of breaking bones – he considered the<br />
way that tandem jumps are made and came up with the<br />
solution of landing with his legs up with plenty of padding<br />
in his jumpsuit pants.<br />
His first post-accident jump (in Australia) was done in<br />
tandem with a friend who is a jump master. The next jump<br />
was done solo – he hooked his legs up and says it all went<br />
well. Filmed by a local TV station, the video is on YouTube.<br />
“I wasn’t doing it for publicity, I was looking at my own<br />
goals. It only took a month from when I said I was going to<br />
do it to when I was in the sky. Once other people realised<br />
that I was 100 per cent serious it all came together very<br />
quickly.”<br />
By the time he was asked to speak at a parachuting<br />
conference in Brisbane in May this year, he had done seven<br />
solo jumps. The audience cheered when they watched the<br />
videos of his freefalls, and Parachuting Australia donated<br />
a container and harness while Deepseed Jumpwear in<br />
Taupo donated a custom-made jumpsuit. NZ Aerosports<br />
in Auckland made and donated the Icarus parachute<br />
canopy. Deepseed and NZ Aerosports also paid Dale’s<br />
expenses to bring him to New Zealand for this recordmaking<br />
jump.<br />
He credits these two New Zealand companies for their<br />
sponsorship and now has $10,000 worth of equipment<br />
through his various sponsors: “That’s what can happen<br />
if you make the decision to challenge yourself and think<br />
outside the square. Showing passion and commitment<br />
made other people realise I was serious. For some<br />
14
people, the big challenge could be to go out to the shops<br />
in a wheelchair. It doesn’t matter what the challenge is, I<br />
encourage people to have a go.”<br />
With his new gear and his parachute canopy (“beautifully<br />
made in New Zealand”), he wants to get enough experience<br />
to qualify for a demonstration licence which will enable him<br />
to do demo jumps into places like local football stadiums<br />
or at events like disability expos.<br />
Dale’s goal at the moment is to get to the USA, where<br />
there are no licensed paraplegic skydivers. He and South<br />
African Peter Hewitt are the only two people who have<br />
mastered solo paraplegic freefall, and at the moment<br />
Peter Hewitt is recovering from a hip injury, leaving Dale<br />
the only one in the world.<br />
He plans to fly in a wingsuit (“like Batman”) and has<br />
contacted the owner and founder of American company<br />
Phoenix Fly, who will assist Dale with his dream. He points<br />
out that many able-bodied skydivers choose not to fly in<br />
wingsuits as it’s too difficult.<br />
“I am the fastest paraplegic in the world and will go even<br />
faster with my wingsuit. I recently did a jump and got up to<br />
270kmph in freefall! The sky’s the limit but not for me!”<br />
By Karin O’Donnell<br />
Intimate Rider<br />
Features:<br />
Adjustable Height Legs<br />
Non Slip Leg Tips<br />
Machine Washable, Comfortable<br />
Fabric<br />
Folds for easy storage<br />
Intimate Rider comes complete with:<br />
Rider, Rider Mate, Transfer Legs,<br />
2 pairs of slip covers<br />
Only $1445 +gst<br />
Imagine being able to please each other with an effortless sway.<br />
Minimal body movement sets Intimate Rider into a quiet,<br />
smooth and natural motion.<br />
Comfortable fabric conforms to your body and a selection of<br />
colors and pattern will certainly set the mood.<br />
“Using the Intimate Rider alone or with the Rider<br />
Mate provides positions and views that need to be<br />
experienced.”<br />
Not much room is needed to inspire angles of love making<br />
enduring to all those who aspire to take their relationship to<br />
new levels.<br />
Elevate your next position with Rider Mate.<br />
Face to face, back to front or whatever you can<br />
think of, you can achieve with Rider Mate.<br />
A perfect match with the Intimate Rider or it<br />
can be part of something new on its own.<br />
Rider Mate is that special extra something to<br />
spice up any occasion.<br />
Free Phone 0800 115 222 Free Fax 0800 275<br />
19<br />
365<br />
PO Box 12-1454, Henderson,0650<br />
14
AROUND THE WORLD IN 21 DAYS<br />
At the New Zealand Spinal Trust we constantly hear about<br />
issues and serious concerns that SCI people and their<br />
families are having, and rather than just say “that’s no<br />
good” or suggest ways that we know people have gotten<br />
around the issue, we want to get better at actually improving<br />
things. This means being able to engage constructively<br />
with those who establish the legislation that rules us<br />
(politicians and advisors), as well as engaging with those<br />
who design the policies that implement that legislation<br />
(senior public servants, hospital managers, etc) and finally<br />
be able to advocate who apply those policies to us in an<br />
everyday basis (case managers, support coordinators,<br />
and so forth).<br />
Late last year I applied for some funding. The New Zealand<br />
Spinal Trust is becoming more proactive in advocating and<br />
lobbying on behalf of Spinal Network members as well as<br />
all people in New Zealand with SCI and their families, and<br />
I was keen to learn how similar agencies overseas provide<br />
support for people with SCI. I learnt I had been awarded<br />
a Winston Churchill Memorial Trust Fellowship to travel<br />
overseas to the USA, UK and Sweden. This was based<br />
on contacts the late Professor Clarke had and those<br />
established by Julian Verkaaik at the Burwood Academy.<br />
My trip got off to a great start with an upgrade to premium<br />
economy on the first big leg from Auckland to Los Angeles.<br />
Unfortunately, many of the luxuries available were wasted<br />
on me because I was feeling freaked out about the fact<br />
that I hadn’t written the presentation that I was going to<br />
be giving the team at the National Rehabilitation Hospital<br />
in Washington DC, so I spent most of the flight trying to<br />
write it. I think I got three hours sleep before four hours at<br />
LAX Airport followed by another five hours with the poor<br />
people in cattle-class to New York. There I was met by my<br />
old schoolmate Craig and his lovely new American bride,<br />
Brittany (not Spears, luckily), then taken to their apartment<br />
smack in the middle of Manhattan, just a couple of blocks<br />
from Times Square. Next day with no sign of jetlag<br />
(amazingly!), it was off to see a Yankees baseball game<br />
at the famous new Yankee Stadium in the Bronx. What a<br />
great dose of Americana to have, followed by a long walk<br />
through part of Central Park including<br />
the famous Strawberry Fields in front of<br />
the Dakota Building where John Lennon<br />
lived (and died).<br />
Sunday meant it was off to the top of<br />
the Rockefeller Center (30 Rock) to<br />
see the skyline. This is recommended<br />
because you get great views of the<br />
Empire State Building – which of course<br />
is difficult if you’re on top of the Empire<br />
State Building. After that a quick swing<br />
through Grand Central Station a tourist<br />
boat ride around Manhattan (half-price<br />
for wheelies) - Statue of Liberty, Brooklyn<br />
Bridge, where World Trade Center used<br />
be, etc. Then off to the airport in the<br />
scariest taxi ride of my life (exceeded<br />
in Santorini – but more on that later)<br />
and flying down to Washington DC to<br />
stay with the very generous Professor<br />
Gerben De Jong, the director of the<br />
Center for Post-Acute Studies at Washington’s National<br />
Rehabilitation Hospital.<br />
Monday morning Gerben dropped me at the suburban<br />
metro station closest to his place and assured me I should<br />
be fine. When I got underground and figured out that the<br />
ticket machine actually took banknotes as well as coins<br />
(provided the notes were facing up the right way), the next<br />
challenge was making sure I got on the train going in the<br />
correct direction. Ultimately I made it to my destination in<br />
the central city and have to say the system was amazingly<br />
accessible – very easy to get on and off and all stations<br />
had lifts, even if they were sometimes hard to find and you<br />
had to make sure you used the right one.<br />
The first appointment on Monday morning was to take<br />
up the invitation of Elizabeth Leef at the United States’<br />
National Council of Independent Living to participate in<br />
their march to the US Capitol Building. It turned out that the<br />
police hadn’t agreed to issue a permit for the march, but<br />
the over 200 wheelies and others with disabilities decided<br />
to march anyway, with the resultant traffic chaos causing<br />
great delight to the march organisers (if not the police).<br />
We were protesting about some ludicrous legislation that<br />
they have in the US called the ‘institutional bias’ that<br />
causes many states to force people with disabilities into<br />
nursing homes rather than being supported in their own<br />
homes, which is actually a cheaper option. They had lots<br />
of placards as well as signs for each state, so I waved the<br />
South Dakota one since they were nowhere to be seen.<br />
It was a great experience and ended with a stirring rally<br />
in front of the Capitol Building with songs and addresses<br />
by various bigwigs and senators. During the march I was<br />
befriended by the team from Colorado and was invited to<br />
accompany them on their lobbying visits to their various<br />
congress men and women (the equivalent of our MPs). I<br />
learnt a lot from seeing how they made their approaches<br />
and how they kept their message simple.<br />
That afternoon and over the next two days I met<br />
another 13 people from a wide variety of highly effective<br />
organisations. I got to share a little of what the New<br />
Zealand Spinal Trust is up to and at the same time scored<br />
16
some tremendous advice. The dreaded presentation to<br />
National Rehabilitation Hospital actually went pretty well<br />
and it became clear to me that the NZ Spinal Trust has a<br />
lot to be very proud of with our excellent programmes and<br />
publications.<br />
Wednesday evening it was off to London, which involved<br />
sitting delayed on the tarmac before take-off for five hours<br />
waiting for thunderstorms to pass. Considering what<br />
had happened to the Air France flight of the same type<br />
of aircraft over the Atlantic a few days before, we didn’t<br />
mind their conservative approach. Roger McClay, the New<br />
Zealand Spinal Trust’s new manager, Northern Region, met<br />
me at Heathrow and we took the Heathrow Express train<br />
in to Paddington Station. Again, very accessible and the<br />
quickest and cheapest way into town. Unfortunately, due<br />
to my airline delay, we had missed our first appointment<br />
of the morning, but an excellent replacement occurred<br />
because the day before Roger had helped a lady put<br />
her wheelchair into her car as he was walking past and<br />
this led to us having a lunch date instead of our missed<br />
appointment. More great advice was received from her as<br />
well as a number of good leads for some more very useful<br />
meetings.<br />
On Friday we got the overground train from Euston Station<br />
up to visit the British Spinal Injuries Association (SIA)<br />
team in Milton Keynes. This was a reasonably accessible<br />
experience which involved the station porter finding a<br />
portable ramp. SIA operate out a beautiful new ‘green’<br />
building. They’ve got hundreds of square metres of photoelectric<br />
solar panels, moss and earth covered roofs and<br />
‘intelligent’ windows, all of which combine to make very<br />
energy-efficient building. Paul Smith and Debbie Schofield<br />
made us very welcome and we learnt lots before Paul gave<br />
us a ride over to see the Stoke Mandeville Spinal Unit.<br />
This hospital was the first proper spinal unit in the world<br />
and has about 110 beds (Burwood has 26 and Auckland<br />
has 17), including a dedicated paediatric SCI ward.<br />
The weekend was our chance to be tourists so we managed<br />
to squeeze waiting to see the queen for two hours (seeing<br />
her for about 0.3 of a second) at the Trooping the Colour<br />
(the queen’s birthday parade). We also took in Winston<br />
Churchill’s War Museum, the London Eye, the Tower of<br />
London (couldn’t actually do much of), Chelsea Market,<br />
Southbank pubs and a great whisky shop. Probably the<br />
highlight was seeing the Queen and Ben Elton musical We<br />
Will Rock You. All these adventures managed to involve<br />
lots of cheap tickets, queue jumping and very helpful<br />
locals.<br />
We had been told by everyone to avoid using the London<br />
Underground because few stations are accessible and<br />
those that are often have their lifts broken. So we were<br />
using a heap of taxis (the classic London black cab that<br />
the Super Nanny uses), which are all accessible in a kind<br />
of “steep ramp, sit sideways, keep your head down” kind<br />
of way. However this was getting incredibly expensive<br />
(especially when all cabbies only accepted cash!?) so<br />
we decided to start using the buses and immediately<br />
wished we’d started earlier. All of the London buses have<br />
extendable ramps and are cheap, very easy to use and<br />
due to the traffic congestion not much slower than cabs.<br />
The routes go everywhere important and we only needed<br />
to wait 10 minutes at the most.<br />
Monday was about more meetings but we managed to<br />
squeeze in a quick visit to the British Museum and a look<br />
at the controversial Elgin Marbles – not small glass round<br />
things but the marble panels from the Parthenon in Athens<br />
that Lord Elgin effectively stole 200 years ago and that the<br />
British aren’t very keen to give back.<br />
Awake at 3.30am the next day in time to get to Heathrow<br />
for our flight to Stockholm. A 550 Krona taxi fare (NZ$110)<br />
in to our hotel persuaded me that the next time I travel to<br />
Stockholm (in another 45 years), I’ll make sure I use the<br />
train. Once at the hotel, Anna-Carin Lagerström picked<br />
us up and after a quick tour of the central city took us to<br />
see the Spinalis and Rehab Station facility situated in a<br />
lovely wooded national park. This Swedish spinal unit has<br />
an incredible energy and positive feeling about it. This is<br />
probably a function of a lot of very funky (but cheap) design<br />
but also the large number of busy wheelies on staff.<br />
More meetings followed with Dr (soon to be Professor)<br />
Claes Hultling, the founder and clinical manager of the unit<br />
(a C7 tetra and similar type of man to the late Prof Alan<br />
Clarke), the chairman of their board Göran Lagerström<br />
and Peter Fahlström, who runs an organisation called<br />
Rekryteringsgruppen or “Recruitment Group”. They do<br />
what they call “active rehabilitation”, which I think is<br />
similar to what BackUp NZ do, but is less adventure sport<br />
focused and more explicitly about life skills, plus many<br />
others. We got out onto the waterways around Stockholm<br />
in a fully accessible boat (roll on/roll off) with Claes, Göran<br />
17
AROUND THE WORLD IN 21 DAYS continued<br />
and a number of the recruitment group team – a great way<br />
to see their beautiful city.<br />
In Stockholm we used the trains (both above ground and<br />
underground) and found them very good. They weren’t<br />
quite as good as the Washington DC ones but would be<br />
fine for a para or manual chair-using tetra with a little help.<br />
Powerchair users are likely to get their wheels stuck in the<br />
gap, which could prove ugly! The lifts in the Stockholm (or<br />
hiss as they call them – maybe due to the sound the doors<br />
make when closing?) left a lot to be desired and the smell<br />
meant that Roger and I started calling them the “piss”.<br />
The highlight in Stockholm was an evening spent picking<br />
the massive brain of Dr Adolf Ratzka, a wheelchair user<br />
for nearly 50 years and one of the original founders of the<br />
disability rights movement at the University of California<br />
Berkley in the late 1960s. He is the founder and director of<br />
the Swedish Institute on Independent Living and remains<br />
a very powerful and effective advocate.<br />
Another 3.30am start on the Friday saw me on my way to<br />
start the holiday part of my trip to catch up with a group of<br />
mates on the Greek Island of Santorini for five days. I flew<br />
Stockholm to Copenhagen to Athens to Santorini, and the<br />
temperature got steadily hotter the whole way. So there<br />
we were: 17 Aussies, seven Dutchies, three Austrians,<br />
one Greek and a Kiwi, all making a lot of noise at the<br />
Perissa Beach Bar and drinking and eating far too much.<br />
The island is an old volcano with the most well-known<br />
Santorini scenes (Fira and Io) clustered around the caldera<br />
(crater). Perissa is almost dead flat and everywhere is<br />
paved so was really pretty good for a wheelchair, the main<br />
barriers being the typical unnecessary one or half-step<br />
that shops often have, as well as the fact there are no<br />
footpaths so everyone has to walk on the road – a very<br />
scary experience, especially with the narrow roads and<br />
insane Greek drivers.<br />
My accommodation at Studio Maria was really very good.<br />
The bathroom was a little cramped but useable and it had<br />
one step up from the road – but then no accommodation<br />
in town was advertised as being wheelchair accessible so<br />
I was lucky to find a place as good as this. The highlight<br />
would have to be visiting Io at the northern end of the<br />
Island. A good smooth path runs along the top edge of<br />
the town providing great views of the typical stacked<br />
white Santorini architecture. Dropping down to the Io Port<br />
around to the isolated headland for lunch was the best –<br />
again the usual one step followed by a flat path around a<br />
slightly scary cliff (short drop into a deep ocean) followed<br />
by yet another feed of tzitzaki and calamari.<br />
Santorini and Greece were beautiful but perhaps one of<br />
locals said best. It was a para named Michael who runs an<br />
ice cream shop at the start of the walk to the Red Beach.<br />
He has lived his whole life on Santorini (he used to be<br />
number one in wheelchair tennis in Greece) and when we<br />
discussed access on the island he said the Greeks just<br />
live for today and never plan anything. This was especially<br />
true of construction (see beach access insert). When<br />
I toasted Yani, the Beach Bar manager, with the usual<br />
“Good luck” he proceeded to tell me how he had no good<br />
luck because he had been trapped on Santorini for the<br />
past 20 years. Well, I’m sure 20 years in a place as nice as<br />
Santorini is not most people’s idea of bad luck.<br />
Then all too soon it was time to head home. As I was waiting<br />
for the first flight and recovering from the scariest taxi ride<br />
18
of my life (100 km/h through tiny gaps, overtaking on blind<br />
corners and overtaking with seriously oncoming traffic) I<br />
made the mistake of calculating how long the homeward<br />
journey would take and came up with 37½ hours (26½<br />
flying and 11 in departure lounges). It seemed like a very<br />
long way home without any premium economy upgrades<br />
to make me feel more<br />
important. I arrived<br />
back in Christchurch<br />
at midday on the<br />
Friday and after a<br />
couple of early nights<br />
it was all back to<br />
normal at work on<br />
Monday morning –<br />
luckily swine flu free!<br />
All in all it was a great,<br />
although very busy,<br />
trip. Hard to believe it<br />
was only 21 days.<br />
The marked “Disabled<br />
Access” to the beach<br />
at Perissa. It has been<br />
this way for at least<br />
three years, so maybe<br />
could be described<br />
as a work in progress<br />
in the Greek sense.<br />
Notice also the tree<br />
right in the middle of<br />
it. The crazy thing is<br />
that about 1 km up, beach access is possible straight off<br />
the paved road onto a network of white wooden walkways<br />
that are there for people to use due to the black sands of<br />
the beach getting too hot to walk on<br />
Andrew Hall<br />
Light-weight wheelchair<br />
for heavy duty use<br />
• Heavy Duty (159kg capacity)<br />
• Highly Adjustable<br />
(sizes: 20”- 22” width, 16”- 22” depth)<br />
• Lightweight (20kgs incl. accessories)<br />
• Maximum Responsiveness<br />
• Sleek, Uncluttered Design<br />
• Wide Range of Colours Available<br />
<br />
Now available for trial.<br />
Freephone 0508 468 222<br />
www.invacare.co.nz<br />
19
20