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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 />

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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 />

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• 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 />

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Freephone 0508 468 222<br />

www.invacare.co.nz<br />

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