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InTouch
KIA NOHO TATA Inclusive | Inspiring | Informative Autumn 21 Issue 109
Celeb r a t i n g [
our triumphs
To Cyprus with love
Libby’s marathon run for MG
I see you…
A mother’s beautiful,
poetic reflection
Boxing away
perceptions
Olivia is throwing
jabs and hooks from
her wheelchair
Contents
PO Box 12063, Penrose,
Auckland 1642, New Zealand. FEATURES
Freephone 0800 800 337
NZ Phone: (09) 815 0247
International prefix (00649)
Editor: MDANZ National Support Office
info@mda.org.nz
10
0800 800 337
I see you…
Design: The Artset
A beautiful and poetic camp
the.artset@gmail.com
Insta/facebook: @theartset reflection from a grateful mother.
Cover photography:
FinisherPix®
Contributions: We welcome
contributions, comments and
letters to the editor. We thank all
contributors to this edition.
12
Subscriptions: In Touch is available Home is where the
free to people with neuromuscular
conditions, their families, health and
heart is for award-
education professionals and other
interested people.
winning author
Adrienne Smith’s contemporary
Advertising: In Touch welcomes
advertising enquiries. For a rate card,
small-town stories are winning fans.
please contact the MDANZ office.
Printer: Alliance Print
09 358 5151
allianceprint.co.nz
The opinions and views expressed in 14
this magazine are not necessarily those
of the Muscular Dystrophy Association. To Cyprus (and
All material in this magazine is MG) with love
copyright. You must therefore contact
the editor for permission before
A first-time marathon runner raises
copying or reproducing any of it. awareness and funds for MG.
Charities Commission Registration:
CC31123
ISSN 1179-2116
MDANZ would like to thank Nick Lingard
Foundation
the following supporters:
Autumn 2021 | Volume 109
REGULAR 7 Pride for Dukies’ 22 Why take part in
achievements clinical trials?
2 Kōrero with Tristram By Award Leader Marty Price. There are plenty of benefits
From the desk of the Chairperson. to taking part in clinical trials.
8 A new circle of friends
and a confidence boost
MDANZ NEWS Camille Peterson on what the
YOUR CONDITION
Hillary Award means to her. IN REVIEW
23 Myasthenia Gravis
FEATURES contd... A review of MG, an
auto-immune disorder.
3 America’s Cup 16 Boxing away
more accessible perceptions
New vans are helping to reduce and challenges 25 Many more adventures
transport barriers for members. Olivia Shivas is throwing jabs,
to be had
hooks and uppercuts from A “zombie-ish” moment in the
4 Dragon slaying, car lead up to a major solo art
her wheelchair.
racing and building cities exhibition led to Judy Smith’s
Scott Boyle checks out the ocular MG diagnosis.
controllers of two new consoles. RESEARCH
5 A cup of tea 18 The good and the CLINICAL
and a catch up… bad of disability data PERSPECTIVES
With Jane Hazlett. More analysis of the hidden
costs of disability is needed. 26 A rough guide to
6 Ensuring our vaccine testing and
voices are heard 20 Telehealth wheelchair approval processes
An update on the Disabled assessments The main stages of development
People’s Organisation Coalition. New research finds good news. and delivery of a new vaccine.
We would also like to acknowledge our corporate sponsors: Also thanks to the ANZ Bank Staff Fund,
ARA Lodge No 348 IC Charitable Trust, NZ Post
Community Post, One Foundation, Richdale
Charitable Trust and the Independent Living
Service for their continuing support.
From the desk of the Chairperson
Kōrero with Tristram
The importance of the Covid-19 immunisation
campaign cannot be underestimated.
Well I’m sure, if you’re feeling like me, that the relaxation Bottom line, although we may already be sick of it, we
of the summer break feels well behind us all now as we haven’t heard the end of Covid yet – it will be with us for
power into another year of hard work, big challenges, and some time into the future.
exciting opportunities. Meanwhile, the time-critical challenge is getting these
An important piece of news from members’ perspective immunisations to our most at-risk and less-connected
is the ongoing campaign to immunise the country against communities of members.
Covid-19. As a team we are strategising about what local
There will be a sequenced roll-out based on those initiatives we can do to work with DHBs and other
that are higher risk going first. The importance of this providers as they begin the roll-out to ensure our
campaign, for our individual and collective safety, cannot members are front-and-centre in the implementation.
be underestimated. We also want to encourage you to get your usual flu
Some critical elements that our team are mindful of, and shot done and out of the way as soon as possible as the
will advocate for, are the fact that you, our members, and two immunisations cannot be given within several weeks
everyone in your bubble, should be immunised as soon as of each other, and the Covid-19 campaign will be ramping
possible when it becomes available in your area. up at about the same time.
The Covid-19 variants are significantly more Finally, I want to reassure you, from my role on the
transmissable and therefore the possibility of the Government Covid-19 Immunisation Implementation
virus escaping our MIQ facilities and re-entering the Advisory Group, that from the data I’ve been seeing inside
community remains a serious concern. the Ministry of Health the immunisations are very safe,
Although the immunisations each provide a good level have been well tested (not just in trials but as deployed
of personal protection, the pieces of evidence that are still in several countries now) and seem to provide very good
lacking are whether the immunisation prevents someone levels of protection from serious illness.
transmitting the virus to others around them.
Currently it looks like they may not fully prevent
transmission hence the usual protections of physical
distancing, wearing masks if you can, handwashing and
contact tracer app use are even more important now. Dr Tristram Ingham
Additionally, as more variants are identified we need to National Executive Chairperson
be mindful how effective these immunisations will be in
the longer term.
2 | InTouch magazine Autumn 2021
MDANZ
Useful updates for
MDANZ members news
America’s Cup more accessible
thanks to minibus grant
New vans are helping to reduce transport barriers such as accessibility
and affordability for MDANZ members. By Melanie Louden.
A generous grant and the hard work
of van interior experts meant MDANZ
members had improved access to
America’s Cup events held in Auckland
this month.
Funding from the Lottery Grants
Board, to the tune of $233,174, meant
the association could purchase
two Mercedes Benz minibuses, and
have them fitted out for wheelchair
transportation by the team at Jackson
Top left: A very happy bunch. On their way
Van Interiors. to the Northern Region family camp held on
National Executive Chairperson Waitangi weekend, are (clockwise from front
left) Ethan King, Oliver King, Neil Singh, Lachlan
Tristram Ingham says the organisation Islip and Neil Westwood.
wanted to provide a free door-to- Top right: The vans are fitted with hoists that
can lift 350kgs.
door wheelchair accessible shuttle
Left: Jackson Van Interiors General Manager Neil
service to members to “support active Collis, left, and Northern Region Chairperson
and National Vice-Chairperson Trevor Jenkin
engagement in America’s Cup events”.
with one of the Mercedes Benz minibuses.
The vans transported members to
observation areas in the Viaduct and at He says factory minibuses don’t attending Northern Region camps.
Bastion Point. meet the needs of everyone, so the “In the past people haven’t attended
Once the racing is over, one van will company does everything from camp because they can’t get there,
be used by MDANZ’s Northern region, manufacturing and fitting seat frames or they’ve had to hire a van to get
and the other by the Central region to and hand controls, to carrying out there – which is an extra cost on top of
provide ongoing transport options for crash tests to prove that their seats attending camp.”
members to events. meet NZTA safety standards. He says MDANZ is incredibly grateful
“A number of members have been Northern Region Chairperson and to Lotteries for the generous grant and
unable to attend our peer support National Vice-Chairperson Trevor Jenkin to Jackson Van Interiors for the great
groups, annual meetings and community says the team at Jackson Van Interiors customer service. “Without the help of
events because of the lack of accessible, were extremely accommodating as Lotteries, Ingham Prestige Mercedes
affordable transport,” Tristram says. they worked towards getting the vans and Jacksons our members would have
Jackson Van Interiors General Manager fit for purpose. struggled to attend the America’s Cup
Neil Collis says it takes up to 160 hours “Nothing was too much trouble for events and continued to miss out on
to kit out an empty van with reinforced these guys.” Trevor says the vans will be events and support services. Thank you
floors and walls, wheelchair restraints, a vital tool in helping members attend for your support of MDANZ – it really
swing-out seats and a hoist. events and access services – including does make a difference,” Trevor says. N
InTouch magazine Autumn 2021 | 3
MDANZ
news
Dragon slaying, car racing and building
entire cities with your mates
As more people pick up gaming Scott Boyle checks
out the controllers of two new consoles.
2021 has finally rolled in, kicking its
predecessor to the curb and daring
to be even worse.
Last year was a roller coaster of
epic proportions and definitely one
that none of us wish to repeat. But
as Covid is going to be a big part of
our lives going forward perhaps we
should look at new ways to have fun
and socialise. And what better option
than gaming.
Scott Boyle is enjoying a game about Vikings during the Scandinavian invasion of England.
2020 was a fairly important year for
gaming, and it had a massive effect From slaying dragons and surviving Of course, none of this matters
on how people view games due to in apocalyptic wastelands, to racing unless you can play. Having played
millions of people wisely going into cars and building entire cities with on both consoles since release I can
lockdown. your mates. Games let you do it all! say that the controllers are very easy
Our own lockdown was rather brief Even better is that gamers are to handle.
compared to the rest of the world, pretty inclusive and welcoming to Having weaker hands myself I am
but we were still left with weeks of newcomers. Take ‘Skyrim Grandma’ always cautious of new controllers,
nothing to do. for example, a wholesome 84-year- but both are a good size, easy to hold
Reports say that thousands more old who streams herself playing and with sensitive buttons.
people purchased a new console games for the whole world to see. Even better is the customisation of
before and after lockdown as a But where do you start? Well settings, making life much easier for
result of the boredom, giving them thankfully October and November those of us with physical struggles.
the chance to experience entirely new last year saw the launch of the Throughout 2021 we aim to share
stories, challenges, and adventures. Playstation 5 and Xbox Series X. articles and blogs with our amazing
Two powerful new consoles that members about the world of
are much faster than the previous gaming. Topics such as what games
generation and allow for the making
are right for you, the health benefits
of bigger and better games.
of playing, the culture of the industry
At the moment I’m playing a and even building a career by being
Date for your diary game about Vikings during the a gamer. So, stay tuned. N
April 30, 7pm: MDANZ AGM via Scandinavian invasion of England,
something that is thrilling from a Scott Boyle is a member of the
Zoom. Members will be emailed
gameplay perspective, but also very MDANZ National Council.
a link closer to the date.
historically accurate.
4 | InTouch magazine Autumn 2021
MDANZ
news
A cup of tea and a catch up with Jane Hazlett
Each issue we introduce a MDANZ team member.
How long have you worked for the members taking every step possible
Muscular Dystrophy Association to achieve their goals and to be
and what do you do? interacting socially in the community
I joined the Canterbury Branch team and supporting each other, as well as
in November 2020 as the Fieldworker accessing and enjoying the beautiful
for the Upper South Island. country that we live in.
What qualifies as a great day What are you passionate about?
at work for you? I am passionate about the health
A great day at work for me is meeting If resources and funds weren’t an and well-being of not only myself
our members and getting to know issue, what would you like to see and family but also those around
their personal strengths, needs and our members enjoying? me. I believe it is important to always
goals and being able to facilitate I think the “Covid year” has taught us look at the positives in your life as
access to further supports, services to make the most of everyday and otherwise it is too easy to get bogged
or resources and feeling like I have the opportunities that are presented down with the negatives, which
made a difference to someone’s life. to us. I would love to see our never makes you feel very good. N
Winner of the Henry Kelsey Scholarship
The winner of the Henry Kelsey is investigating the effect of a small Alex was born in Hong Kong and
Scholarship, 26-year-old Alex Chan peptide naturally produced by the his family came to New Zealand when
of Auckland University, says he was mitochondria called MOTS-c on muscle he was just two and he grew up in
quite shocked but pleased when function. One of his referees says this Auckland’s Botany Downs.
he got the news that the $10,000 is a new and exciting field of research
Unsure what to do when he first
scholarship was his. in that MOTS-c appears to be largely
went to university he initially went
The scholarship provides funds produced by the muscle, and early
into Biomedical Sciences, but later
for individuals to undertake evidence suggests it can improve the
developed an interest in nutrition.
research towards a PhD studying metabolic function of muscle, and
His Master’s degree was investigating
muscular function, including the perturbed mitochondria and metabolic
different dairy protein formulations
causes and treatment of muscular processes are common in many muscle
on skeletal muscle protein synthesis
dysfunction. MDANZ collaborates pathologies. The outcomes from
with Universities New Zealand, which and his PhD is in muscle and
Alex’s research project has potential
administers the scholarship, and to be translated into clinical models of mitochondrial physiology.
our National Executive Chairperson, muscular dysfunction. Alex says that As to the future, he is unsure as
Tristram Ingham, chairs the committee. by understanding the mechanisms yet, but is open to the possibility of
Alex, who is in the third year of his of MOTS-c, it can provide a better a career in academia, teaching or
PhD, explains his research is in a new understanding on how MOTS-c can industry work. But his current goal is
area looking into how mitochondria improve skeletal muscle function when to finish his research and PhD. N
regulates metabolism and stress. He exposed to metabolic stress.
InTouch magazine Autumn 2021 | 5
MDANZ
news
Ensuring our voices are heard
Alison Riseborough, one of two MDANZ representatives on the Disabled People’s
Organisation Coalition, provides an update on recent and current issues.
In mid-2020 I replaced Tristram
Ingham as one of MDANZ’s two
representatives on the Disabled
People’s Organisation Coalition
committee (DPO Coalition). Tristram is
still the DPO Coalition representative
on the Integrated Monitoring
Mechanism (IMM) and is on some
other government working groups
because of his valuable skills and the Disability Action Plan. The report can be found at: https://
expertise. committee reviews and comments www.ombudsman.parliament.nz/
The DPO Coalition represents on the reports before they are resources/making-disability-rights-
the voices of disabled people to published. The first progress real-pandemic
the highest levels of government. reports on the current DAP are due Last year, Covid-19 severely disrupted
Other groups in the Coalition are the to be published in early 2021. many of the proposed actions under
Disabled Persons Assembly NZ (DPA), • Accessibility legislation: The new the Disability Action Plan. It looks like
Blind and Low Vision NZ, People Government has renewed its the pace of work is picking up again
First NZ, Deaf Aotearoa, Kāpō Māori commitment to establishing an in the first half of 2021.
Aotearoa, and Balance Aotearoa. Accessibility for New Zealanders Some policy areas where there
Since joining the DPO Coalition Act. The DPO Coalition wants to could be developments are:
committee, I have learned that its ensure that disabled people’s • System transformation (disability
activities include monitoring and views are gathered effectively support services).
providing advice on the Disability and are reflected in the advice
• Access to health services.
Action Plan, meeting with the on options that goes to ministers
Minister for Disability Issues, meeting in May 2021. The Access Alliance • Education.
senior government officials and is working in partnership on • Employment.
commissioning research on pressing the operational aspects. The • Welfare reform.
disability issues. engagement process was
• Building the leadership capabilities
The DPO Coalition has to stretch expected to get under way
of disabled people.
itself wide to cover the many in the new year. There will be
important issues that affect disabled opportunities for discussion and Lack of accessible and affordable
people in New Zealand. Some of the input through each DPO. housing is another critical area where
recent and current issues of interest urgent reform is needed.
• Making disability rights real
to MDANZ members are: in a pandemic: DPO members Please look out for opportunities
• Disability Action Plan progress were involved in production to have your say on these issues and
reports: Each government of a report describing disabled others that affect you. N
agency must report six-monthly people’s experiences during the You can contact Alison at
on the work it is doing under Covid-19 response last year. The alison.riseborough@mda.nz
6 | InTouch magazine Autumn 2021
MDANZ
news
Pride for Dukies’ achievements MDANZ staff
MDANZ members taking part in the Duke of Edinburgh’s Hillary on the move
Award are rising to the challenge, writes Award Leader Marty Price.
The Central Region farewelled
fieldworker Raygaana Naidoo,
When I think about the Dukies as Camille is in Auckland and has also who was a real professional, hugely
they are tracking through their goals completed her three sections. capable and much liked by members.
for the Bronze or Silver Medal, it fills These three are our Bronze Medal Ray joined us in August and left at
me with a lot of pride that I am on Dukies and all of them have done the end of 2020. We wish her the
this journey with them. exceptionally well so far. very best.
I just want to thank our Dukies for Our Silver Dukies are Jack in In January, the Central Region lost
persevering through the lockdown Invercargill who has completed his the skills, enthusiasm and knowledge
and after it with each of their goals. physical section of walking which he of Michelle Smith – the Community
As always stated, there is no rush to has done very well at, and Dylan of Coordinator (East Coast) since June
complete either medal; apart from Auckland who has also completed 2019. Michelle, also a member, made
ensuring it is all completed before his skills section of model rocketry. a tangible difference to the member
that Dukie turns 25 years old, as this engagement in the East Coast districts
Once all the sections are
is the oldest they can be. having coordinated, run or supported
completed you can prepare to do
For our Dukies it all depends on the Adventurous Journey, and this many member events, peer-support
their abilities and their condition as can be done in a group setting workshops or fundraising initiatives.
to how they will work through their with other Dukies or individually. Our Wellington members and
goals and how far they want to At MDANZ we believe it’s great to the team will miss both Ray and
push themselves. do it together as the Dukies can Michelle, but Philippa, Talitha and
The variety of goals that have meet each other and chat about Louise will be very capable as they
already been completed is a their goals. pick up responsibility for covering
testament to them; I am so very We are tracking very well, and we the whole central region.
proud of what they have achieved would love to see more members, The National Support Office has
so far. who are keen to step outside their welcomed Kristin Cross who took
I know some of our Dukies were comfort zone, join us. on the new role of Fundraising and
very nervous at putting themselves Please get in contact; you won’t be Partnerships Advisor in January.
forward for this knowing that their let down. Plus, these goals can lead Kristin comes from a corporate
families cannot help them do it; they you to many other opportunities in marketing background, has her own
can drive them to places but can’t the community. N sales business, and helped St John
actually help. So, this was a step create a new revenue stream that
outside the box for all. The Duke of Edinburgh’s Hillary Award engaged businesses. N
is for 14 to 24-year-olds. For more
Currently we have Ryan from Gore
information go to:
who has completed all his sections
https://www.mda.org.nz/What-We-
and is just waiting for his assessors
Offer/Duke-of-Edinburghs-Hillary-Award
to sign these off.
Joy in Nelson has completed her
physical and voluntary sections and is
one hour away from finishing her skills
section and being signed off too. Kristin Cross
InTouch magazine Autumn 2021 | 7
MDANZ
news
A new circle of friends and
a boost in confidence
From taking on a leadership role, to spending more time with
her mobility dog, Camille Peterson is taking full advantage of
the Duke of Edinburgh’s Hillary Award. By Melanie Louden.
The opportunity to combine her members taking part in the Duke
hobbies with stepping out of her of Edinburgh’s Hillary Award – a
comfort zone has given teenager programme that gives 14 to 24-year-
Camille Peterson a new circle of olds the chance to challenge
Camille gave her trusty mobility dog Lewis
friends and a boost of confidence. themselves, learn new skills and
extra training as part of her Duke of
Edinburgh’s Hillary Award. Camille is among the MDANZ meet new people.
Participants carry out tasks in
three categories – service; physical
recreation; and skills, and go on an
Adventurous Journey to complete
bronze, silver and gold levels.
Members taking part design their
own programme, set goals and record
progress towards their achievement –
all with the help of MDANZ Award
Leader Marty Price.
At the bronze level, participants
average at least one hour per week
on each section, plus a further three
choose your
months in one of the service, skills or
physical recreation sections.
own adventure! Camille, who has limb-girdle
muscular dystrophy, began the
programme mid-2019 and has
The Duke of Edinburgh Award creates opportunities for completed the first three parts of
young people to learn a new skill, get physically active, the bronze award.
give voluntary service to their community and take part in
The 17-year-old Aucklander picked
an adventurous journey, an expedition or exploration in up volunteering in the Sexuality And
our great Kiwi backyard. They build confidence, problem- Gender Acceptance group at her
solving skills and greater resilience, giving them more school for the service category.
tools in their toolbox to thrive in our fast-changing world.
This saw her volunteer as the Year 12
Contact us on info@mda.org.nz or phone 0800 800 337 leader last year, and this year she is the
Equipping all young New Zealanders for promising futures. Year 13 leader. Among other things,
she helps organise events, fundraising
and meetings.MDANZ
news
Camille says putting herself forward the pool meant she had to commit to in work mode.
for the leadership role last year was a regular swimming. The Hillary Award has been a
“big push” out of her comfort zone, but “It was a good chance to track my confidence booster for Camille, and
“it was definitely worth it”. progress. I got to know my limits and she recommends it to other MDANZ
“It helped that they were all insanely got into a routine.” members.
friendly people. But I had to get used Camille’s skill category was training “It’s an amazing opportunity to take
to talking to a group of people. Once her mobility dog Lewis, a four-year-old elements of your hobbies and elevate
I got over that initial feeling of ‘these golden retriever. them and to see what it’s like to be
people are going to think I’m weird’ it Lewis has been part of the Peterson doing things consistently.” N
was okay. family for two years and goes to school MDANZ is a licensed Hillary Award
“I’ve made lots of friends through with Camille. provider, and through Award Leader
that group, and I’m helping the “If I drop anything he picks it up. Marty Price, MDANZ can provide funding
community.” He can open doors. We’re pretty close and direct support for members aged
Camille’s physical recreation activity to school – it’s a 20-minute walk to between 14 and 24 years who want to
was swimming, which she was only get there – he can press the button take on the challenge to achieve either
doing occasionally before starting the for the pedestrian crossing with his bronze, silver or gold level awards.
Hillary Award. nose or paw.” For more information go to:
But having a home pool with a hoist Camille says when Lewis wears his https://www.mda.org.nz/What-We-
and needing to keep up her hours in mobility dog jacket he knows he is Offer/Duke-of-Edinburghs-Hillary-Award
A power chair with a difference
Experience one of New Zealand’s
lightest and most versatile
power chairs, designed for
indoor manoeuvrability,
outdoor terrains and easy travel.
www.freedom-chair.nz
Get in touch with Paul 0800 466 626
for your free demonstration. InTouch magazine Autumn 2021 | 9
paul@freedom-chair.nzAround 60 members attended the MD Northern family camp.
I see you…
A beautiful and poetic family camp
reflection from a grateful mother.
Corinne King, mum to Ethan, 9, and Ollie, 7, who both have Duchenne muscular
dystrophy, reflects on a very special weekend away at the MD Northern Branch
family camp and the generosity and love she saw being shared.
I see you... I see you rush to get your brother changed for a swim
I see you rushing to help your dad out of the pool with a and remember his meds at dinner time, without being
hoist, scooter or cane and always with a smile on your face. asked, and you are barely a teenager yourself!
I see two grown men pulling another grown man to his I see you run around with a little boy’s kite because
feet with grace and good humour, so that he could have his little legs won’t let him and seeing his smile was
a swim like everyone else. I see that you could do that a everything.
few years ago by yourself but now you can’t, but you don’t I see you tired yourself, but taking a group of little boys
complain. in the big van just because they wanted to go for a ride.
I see the fear in your eyes when you talk about how your I see you making customised certificates and trophies
son is declining yet you smile and ask about my child. till late at night, just to make those little boys eyes light up.
I see you struggle to get in and out of the pool because You are a true angel and you have no idea.
of your disability, but you do it anyway. I see you making an obstacle course for the boys
I see you sitting beside your wheelchair waiting for it in wheelchairs, thinking about how everyone can be
to charge, not upset that you can’t move because your included and have fun.
wheelchair has no juice, just waiting. I see you helping other people’s kids into paddle boats
I see you pick your brother up from his wheelchair and so they can have the experience when your arms aren’t
place him on an electric scooter so that he can have that the strongest either and your neck and shoulders are
experience. already killing you.
10 | InTouch magazine Autumn 2021Feature | I see you ...
“Your grace and humility are
something people strive for their
whole lives and never achieve,
and you just do it every day
without even realising it”.
I see you walking with your child holding his hand for
every step and NEVER taking your eyes off him because
he can’t fall and he’s unstable. But you never complain.
And I see you chasing an able-bodied kid down on an
David Westwood and his mum Lucy Bennett on the obstacle course.
electric scooter because that scooter is your friend’s –
“And he needs that scooter for his legs!”.
A great time had by all
I see you drive in all different directions to collect
wheelchairs from one location and kids from other The MD Northern family camp was held on Waitangi
directions. All out of the goodness of your heart and all weekend at Ngāruawāhia Christian Camp and was
so as many kids as possible can have fun. attended by around 60 members.
You don’t know you are superheroes special needs The camp was filled with lots of fun and laughter,
families; but you are truly beautiful people and I feel the kids (and adults) enjoyed the pool, the
incredibly blessed to be part of this world. waterslide, paddle boats and a very special visit from
members of the Ngāruawāhia Police who handed
This world I would never have seen had I not had
out wheelchair licenses and trophies to the kids
my boys.
after they finished their obstacle course.
This world of truly selfless people.
Thank you to Pub Charities and the Auckland
This world of immense understanding for others and
Chapter of Harley Owners’ Group (HOG) for helping
putting others needs before your own.
fund this camp.
Your grace and humility are something people strive
for their whole lives and never achieve, and you just do
it every day without even realising it.
These are the beautiful people of my muscular
dystrophy family.
And all that… I saw in just three days at family camp.
Search ‘Ethan & Ollie’s Journey’ on Facebook to follow
what they are doing. Also see their story in the Spring 2019
issue of In Touch.
Neil Singh is all smiles on the water slide.
InTouch magazine Autumn 2021 | 11Home is where the heart is
for award-winning author
Her contemporary small-town stories are winning fans
Adrienne Smith’s first published romance novel has scooped three national awards.
She shares her success story with Melanie Louden.
rights and control over her own work.
“But it does mean you won’t find me in mainstream
bookstores.”
Home of the Heart – a Dragonfly Lake Novel won the
Romance Writers of New Zealand Pacific Hearts award for
Completed Unpublished Novels in 2018 and in 2020, after
it was published, went on to win their Koru Award for Best
First Book.
“It was so exciting to win that, since you’re going up
against other published authors,” Adrienne says.
Her book was also a finalist in the Best Long Book
category for that year.
An unpublished novel that Adrienne plans to rework
Adrienne has collected three awards for her first published novel. and add to her current series has also won Reader’s Choice
for the Romance Writers of New Zealand Clendon Award.
Adrienne Smith’s love of writing started at a young age Inspiration for her “sweet contemporary small-town
and has followed her through to adulthood, resulting in stories” doesn’t come from anywhere specific, she says.
her first published novel being an award winner.
“Stories just pop into my head and grow from there.
The 48-year-old Auckland resident has been writing Usually it will start with a character popping up and
since she can remember. a scene about them, and before you know it, they’re
“I recall being given a very old typewriter – back before demanding to have their whole story told!
we had computers – that didn’t have a working ‘L’ key “I really enjoy getting the voices in my head onto paper,”
and I had to write them all in by hand. My parents were says Adrienne, who also likes craft, knitting her own socks
teachers and supported reading and writing from a very and cross-stitching in front of the TV in the evening.
early age.”
Move forward to 2021 and the romance novelist is
married to fellow award-winning author and MDANZ
Northern Region Fieldworker Darian Smith, and she has “I really enjoy getting the voices
recently won three awards for her first published novel.
Adrienne self-published Home of the Heart – a Dragonfly
in my head onto paper.”
Lake Novel, in 2019 because it allows her to keep the
12 | InTouch magazine Autumn 2021Feature | Home is where the heart is for award-winning author
Home of the Heart – a Dragonfly Lake Novel took Adrienne collection, and a non-
“years” to write. She works in the claims department of an fiction book for writers on
insurance company and hopes to start working part-time how to use psychology to
this year, giving her more time to write. create characters.
Adrienne was diagnosed with myotonic dystrophy 11 His works have gone
years ago and says she is “lucky in that I can still walk and on win a Sir Julius Vogel
work and type”. Award and he has been a
“But things are getting harder. I just try to focus on what finalist several times. He The competition is on between award
has won two Koru Awards winning authors Adrienne and her
I can still do.”
husband Darian.
Darian helps her with a lot of things, and she works from and was a finalist for the
home to make things a bit easier. Self-Published Fantasy
Blog-Off. He has also received the Awesome Indies Seal
“Going out anywhere I have to walk that’s not flat and
of Excellence.
on even ground is difficult, and stairs are an absolute
no-go. Neither Adrienne nor Darian have any plans to stop writing
– she is working on a sequel to Home of the Heart – a Dragonfly
“But more than that, having to give up things like
Lake Novel, while he is starting a shorter young adults’ novel
playing guitar has been a big loss,” she says.
before working on book four in his Agents of Kalanon series.
Darian has published six books – three in the Agents of
Kalanon series (murder mysteries mixed with epic fantasy), You can find paperback and ebook versions of Adrienne and
a paranormal romance set in New Zealand, a short story Darian’s published works at www.amazon.com
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PH: 021 0854 3105MDANZ fieldworker and Myasthenia
Gravis NZ founder, Talitha Vial, left was
part of Libby Carmichael Venning’s
support team in Queenstown.
To Cyprus (and MG) with love
First-time marathon runner raises awareness
and funds for myasthenia gravis.
When MDANZ came to the aid of mum Libby Carmichael Venning, she was so grateful
she decided to run a marathon – giving her one of the best days of her life.
When her daughter had a “full body failure” as a result of about her daughter’s condition.
myasthenia gravis, Libby Carmichael Venning felt helpless. “I just said, these guys are amazing, I’m going to run a
It was November 2019 and Libby’s daughter Sacha Main marathon for them.”
was living in Northern Cyprus. Libby was in Christchurch. So, she did.
“I had been living permanently in New Zealand for one In November last year Libby ran the Sotheby’s
and a half years by then. I felt helpless, guilty, mortified. International Realty Queenstown Marathon to raise
Here was my daughter on the other side of the world…” awareness about the condition that is thought to affect
It was then that Libby reached out to MDANZ. one in 100,000 New Zealanders, and raise awareness for
“I signed up and a fieldworker came to my house. Paul Myasthenia Gravis NZ.
Graham… what an amazing guy,” Libby says. “My friends in Cyprus, my son Tomas, and Sacha, [all] said
Paul, who has since retired from MDANZ, referred Libby ‘don’t be stupid’. I definitely took myself totally out of my
to fellow fieldworker Talitha Vial, who also has myasthenia comfort zone.”
gravis and is the founder of support group Myasthenia In the previous two years Libby lost 20 kilograms and
Gravis NZ. a year before the marathon she started training, with her
Libby, who turns 50 this month, was impressed by the programme intensifying in the last 16 weeks.
information and support she received from MDANZ, Paul “It was time consuming, life consuming. And at times it
and Talitha as she sought to understand and learn more was quite terrifying – you set yourself targets and sometimes
14 | InTouch magazine Autumn 2021Feature | To Cyprus (and MG) with love
your body just doesn’t want to do it. Just like MG.” Sacha had no more episodes until the “full body failure”
Libby says taking part in the 42 kilometre event was “one in November 2019. These days she isn’t on any medication
of the best days of my life” – after the birth of her children and “just lives day to day aware that her body could react at
and getting married to her husband Geoff. any time”.
She says the race-day atmosphere was great and the Sacha is really proud of Libby, but says at first she
reason for taking part was never far from her mind. didn’t believe her mum was serious about completing a
marathon.
“I had a flannel with a photo of Sacha printed on it. I was
“In Cyprus she wasn’t fit. Mum was a little overweight
running with Sacha all the time, so that was lovely. And I
and loved drinking beer.
died my hair bright blue – the colour for MG.”
“I only realised she was taking this seriously when I would
Libby completed the marathon in six hours 38 minutes
call her and she would say, ‘are you okay? Because right
and 40 seconds and says the event was tough – mentally
now I am training, can I call you back?’.
and physically.
“I was totally amazed at mum’s commitment and passion
“I got to water station number four and I felt really
and I am eternally grateful for the love and support we
rubbish. But when I saw Geoff, Talitha and my best friend
have both found from MGNZ. Talitha is an amazing new
Gill, at the 20 kilometre mark I knew I was going to do it.
friend to my mum.”
“I burst into tears when I crossed the finish line. Talitha
Libby says anyone contemplating what looks like an
was so proud and pleased that I did it for MG.
“unachievable goal” should just get out there and do it.
“The next day I couldn’t walk. I couldn’t sit down, I
“I’d recommend running a marathon to anyone. If
couldn’t do anything… just like MG,” Libby says. “My body
anyone is thinking ‘should I or shouldn’t I’ … just do it – to
wasn’t working that day.
raise awareness, to know you’ve done something special
“I still think about it now and think ‘wow, I did that’. My for someone.”
toes were a bit damaged – but it reminds me of what I did.” “I’m still running, just not stupid amounts. I like running
As part of her efforts to raise money for Myasthenia Gravis now – but just five kilometres at a time.”
NZ, Libby set up a Givealittle page which raised $3345. Talitha used the Givealittle funds Libby raised for
“I was totally blown away. I know 2020 wasn’t a great year Myasthenia Gravis NZ to buy information booklets,
to be fundraising, but if I could raise awareness, then I did keyrings, bracelets and kids’ books.
my job. I never wanted it to be about me.
“I felt pride to be able to spread the word.”
Libby’s daughter Sacha, now 21, was diagnosed with
myasthenia gravis after an incident during a high school
exam.
“When she was 17, she was writing her answers on what Sacha Main
she thought was a piece of paper. But she was writing on
the desk. She had double vision.”
Libby was still living in Cyprus with Sacha at the time,
and after a handful of tests ocular myasthenia gravis was
confirmed.
There had been no obvious signs of the condition, no
symptoms, until the exam.
“She had years of complaining about being tired and
having sore eyes. But we thought she was just going Sacha’s face was printed on a flannel, meaning she was with mum Libby
through those teenage years.” the whole way around the marathon. Photo credit: FinisherPix®
InTouch magazine Autumn 2021 | 15Olivia now attends boxing classes three
or four times a week. Photo: Ben Hotchin.
Boxing away perceptions
and challenges
Olivia is throwing jabs, hooks and
uppercuts from her wheelchair
Olivia Shivas says trying something new can be scary and exciting at the same
time, and there are often additional levels of nerves when you have a disability.
But, she says, you should give it a go anyway. By Melanie Louden.
Olivia Shivas speaks from personal experience when she gym one day and thought ‘I wonder if I could do that?’.
encourages MDANZ members to “challenge what other “There was a sign that you get free gloves when you sign
people perceive about you”. up. I’m always up for free stuff!”
“Don’t let other people’s negative stereotypes and She bravely called and texted the gym in advance so
perceptions of disability hold you back.” there were no surprises for her, or the personal trainer, when
Olivia has been a wheelchair-user her whole life and says she arrived. The 27-year-old Aucklander wanted to start
trying something new is scary and exciting at the same time. boxing by doing one-on-one personal training sessions to
“There’s an additional level of nerves when you have a figure out if she could actually do it and to gain confidence
disability – especially when you’re doing something you before joining classes with non-disabled people.
don’t see normalised in the media, or in the community, However, personal training sessions are expensive, so
as people with disabilities being capable of doing.” Olivia applied to the Bradley Jenkin Memorial Fund to seek
Olivia, who has central core disease, drove past a boxing financial support.
16 | InTouch magazine Autumn 2021Feature | Boxing away perceptions and challenges
“I knew the money would be used in a good way for friends, cooking and baking, reading, and is involved with
me to get fit and, hopefully one day, to inspire other her church, now attends three or four gym classes a week.
disabled people to do the same.” The funding she received “This would not have happened without funding from
contributed to 12 weekly training sessions. the Bradley Jenkin Memorial Fund to try something I would
After a few months of one-on-one boxing sessions with not have otherwise have spent money on. I probably
a personal trainer, Olivia gained the confidence to join a wouldn’t have taken the opportunity to give boxing a go.”
class with non-disabled people. One of her best friends, a fellow wheelchair-user, has also
“I found, if you want to try something new, your now picked up the sport. “It’s exciting that my experience
confidence might not come straightaway. Take small steps, has positively influenced her. She’s the only other
metaphorically if you’re a wheelchair-user like myself, and wheelchair boxer I know, so it’s good to have someone else
do what you’re comfortable with first to reach that goal. to encourage and talk to about the challenges and how we
“The main thing is don’t stop or give up. Progress at a resolve them.”
pace you are comfortable with,” says the former MDANZ Olivia says boxing has changed her life – and it’s not just
National Council Rangatahi Youth Representative. about becoming fit and active.
Olivia says going to her first class with all non-disabled “Boxing has improved my self-confidence, knowing
people was probably “one of the scariest things I’ve done that I’m more capable of doing things than I, and others,
in my life”. thought were possible when you have a disability.
“But there have been so many benefits - keeping fit and “I didn’t join a class with non-disabled people at the start
active, as well as maintaining good mental health.” because I was self-conscious and nervous – not only about
She has lost weight, things are easier for her to do now being capable of being able to box and throw a punch,
– such as climbing in and out of her wheelchair from the but of other people’s opinions of me: ‘What is a girl in a
floor, and she’s able to stay independent. wheelchair doing here?’.
“Despite being a wheelchair-user my whole life and
“Everyone at the gym is so warm and inclusive and
achieving a lot of great things, I still get insecure and
makes sure that I can be involved as much as possible.
compare myself. Everybody does, whether they live with
Yes, I might have to do some things a bit differently, but
a disability or not.
I feel just as much a part of the gym as anyone else.”
“But once you get over those initial nerves, it’s fun and
Olivia, who works as a digital news producer at Stuff.co.nz,
empowering trying new things.”
says boxing in a wheelchair is similar to boxing when you’re
standing up.
“I still throw jabs, hooks and uppercuts, and learn the The Bradley Jenkin Memorial Fund
same boxing sequences. But when I’m boxing with a
The Bradley Jenkin Memorial Fund is designed
partner I’ll have my arms up higher and they need to
to help MDANZ members with a neuromuscular
crouch down a little bit so we are a similar height, but that
condition receive funding for access opportunities
just means my arms get an extra workout.”
and specialised resources that enable them to
Sometimes Olivia’s knees get in the way when she uses
achieve freedom. The fund has helped members
the punching bag, so she adjusts the distance and angle of
purchase specialised sports equipment, participate
her chair.
in sporting events, it has contributed towards the
A big part of boxing is the footwork – moving back cost of obtaining a mobility dog, provided mobility
and forth from your partner or the bag – not just boxing equipment, and assisted with career development
with gloves. such as university and course fees.
“I can’t move around and box at the same time, so we For more information go to: https://www.mda.org.nz/
have to be a bit creative.” What-We-Offer/Bradley-Jenkin-Memorial-Fund
Olivia, who enjoys going out for brunch and dinner with
InTouch magazine Autumn 2021 | 17Research
The good and the bad of disability data
Quality disability data is an important tool that the disability community needs to
hold the government, society and the private sector to account, write disabled
persons advocate, Roger Loveless, and senior policy analyst Sam Murray.
Data is boring, but important! Disability
data is no exception. Complete,
accurate, and robust disability data
is what government needs to make
good decisions around disability policy.
All too often, however, the stories of
disabled people, and their whānau are
not heard.
Quality disability data must
acknowledge the human aspects of
disability. This means looking beyond
the figures that are easy to measure.
We need to value the hidden costs
of disability as an important piece of
the puzzle.
Quality disability data is also an The good news: A growing number time. For example, we can look at the
important tool that the disability of regular surveys now include Household Labour Force Survey. The
community needs to hold the disability questions. These surveys June edition of this survey has had
government, society and the private provide a regular source of disability disability data since 2017.
sector to account. data but come with some caveats. Since 2017 there has been no real
In recent years, there has been good These surveys use fewer disability change in employment outcomes for
and bad news with nationally collected identification questions than the disabled people aged 15-to-64. The
disability data. Disability Survey. This means the employment rate for disabled people
The bad news: Back in 2012, the 2018 variety of impairment types covered is aged 15-to-64 is still under half that of
Disability Survey was cancelled. Since smaller. Fewer disabled people are also non-disabled people in that age group.
1996, the Disability Survey had been identified in this data. A big challenge with disability data is
held every five years. The next Disability As a result, the data is less reliable understanding the effects of age. The
Survey is planned for 2023, which is 10 and tends to bounce around between disability rate rapidly increases over the
years after the 2013 Disability Survey. years. In addition, it is difficult to break age of 65. This means many disabled
This is far too long. The Disability Survey the disability data down by ethnicity, people over 65 have acquired their
is an essential source of disability data impairment type, and/or gender. impairment after reaching the age of
because it interviews a large number This makes it hard to explore the 65. They will still experience many of
of people and includes in-depth diversity of experiences in the disability the same barriers as other disabled
questions on disability. It is vital that community. people, especially around access.
the Disability Survey switches back to The data from regular surveys is They, however, are likely to have
at least a five-year cycle. best used to look at broad trends over more wealth and other assets.
18 | InTouch magazine Autumn 2021Research
As a result, disabled people over 65 Despite the challenges, slow
tend to have better outcomes than progress is being made. The upcoming
younger disabled people. Household Economic Survey release
For example, in 2018, disabled people will have disability data for the first
under 65 were almost 2.5 times more time. You can now access disability
likely to report not having enough data across a wide range of areas on a
income than non-disabled people under regular basis.
65. By comparison, disabled people over We still need a regular Disability
65 were only 1.5 times more likely to Survey however to provide a much
report not having enough income than more detailed picture than provided
non-disabled people over 65. by these regular surveys.
This can become a real issue because The Disability Survey allows us to
of the big differences in median age explore the diversity of experiences
between disabled people and non- within the disability community and
disabled people. Because so many identify the benefits of initiatives such
disabled people are over 65, disabled as Enabling Good Lives.
people have a much higher median You can find most of the recent
age than non-disabled people. In New disability data on the Statistics New
Zealand, people over 65 often score Zealand pages below. Look under
better on poverty, home ownership latest information releases and latest
and wellbeing measures than younger publications: www.stats.govt.nz/
people. topics/disability
Sam Murray (top) and Roger Loveless.
With all-ages disability data, we Surveys that now have disability
are comparing a population with understand the true depth of financial data are:
many people over 65 with a younger and time costs disabled people face. • General Social Survey (2016
population. This can hide the inequality The often-large gap between the and 2018).
experienced by disabled people who government’s support and those costs
have had their impairment from an • Household Labour Force Survey
is largely hidden.
early age. This problem may get worse (June of every year from 2017
We need in-depth analysis of the onwards).
with our ageing population.
hidden costs of disability. This includes
For now, the best we can do is to look • Te Kupenga (2018).
looking at:
at younger age ranges in the data. In • 2018 Census.
• The value of unpaid family and
the future, we need data on the specific
whānau support. • New Zealand Crime & Victims
experiences of people who have had an
• The amount disabled people and Survey (2018/19).
impairment from an early age. The 2023
Disability Survey may help here, but we their whānau spend privately on • Health Survey (2019/20).
still need far more regular data. equipment and support.
Roger Loveless is an advocate for disabled
Another major gap is data on the • The opportunity costs caused when persons, an MDANZ member, and a local
financial and time costs disabled people disabled people and their whānau advisory committee member for CCS
and their whānau experience. There has cannot fully engage in society, for Disability Action Bay of Plenty. He has a
been some work done on this over the example, through lost employment lived experience of disability.
years, but again we still lack a regular or volunteering opportunities.
Sam Murray is a senior policy analyst
and reliable source of data on this. If we could better show the true for CCS Disability Action and is based
This is important because the depths of the costs, this could lead in Dunedin. R
government often does not to increases in support.
InTouch magazine Autumn 2021 | 19Research
Telehealth wheelchair assessments
under the microscope
Research shows the Telehealth Wheelchair Assessment Service is thought to be
a good idea by most wheelchair users and assessors, writes Dr Fiona Graham.
Like a lot of life’s turning points, it
started with a throw-away comment:
‘Someone should study that and see
if it really works.’
I made the comment to Sally
Wallace, an occupational therapist
colleague who was playing around
with telehealth (video-conferencing,
photo-sharing, phone calls) with
clients with complex wheelchair and
seating needs – most of whom had
neuro-muscular changes among their
physical needs.
This was a few years ‘BC’ (Before
Covid-19) so technology software
and hardware was more limited than
it is today, especially within the health
system.
Sally was finding that telehealth the answers to these questions were Lab testing reported equivalent
seemed to work with some people, important to ensure that the health results between in-person and
and often it wasn’t the complexity dollar was well spent. telehealth wheelchair assessment.
of client’s needs that determined Like a lot of life’s turning points, my Clients were big fans when it
whether telehealth assessments were comment was then followed by a lot improved their access to assessors.
successful or not. of hard work. Assessors were more cautious, with
We noted too that very few First, without project funding, concerns about data security and
wheelchair assessors used telehealth a group of my colleagues at Te clinical accuracy.
at that point. Why was this? Whare Whakamatutu (Rehabilitation Clearly, assuming that telehealth
Telehealth wheelchair assessment Teaching & Research) at the University was a great idea and everyone in
seemed to save time and money, but of Otago in Wellington decided to New Zealand should now do it was
did it really when all the costs were canvas the research literature on a risky assumption.
added up? what was already known about the So, with a view to informing
Who did telehealth wheelchair use of telehealth for wheelchair health policy on the New Zealand
assessment work for, how well, assessment. design requirements of a successful
and in what context was all a great We did a scoping review of telehealth wheelchair assessment
unknown. If telehealth was to be research to date and found that service, we applied to the
used more extensively in Aotearoa, minimal research had been done. Neuromuscular Research Fund in
20 | InTouch magazine Autumn 2021Research
2018 and were awarded $17,000 to and shared findings in person with
determine the social and technical Ministry of Health planners. Two
requirements of a Telehealth peer reviewed publications are in
Wheelchair Assessment Service progress.
(T’WAS for short).
Feedback so far is that findings
Our work was also generously
have prompted big insights for many
supported by an advisory group
assessors on how their interactions
comprising wheelchair users, tangata
with wheelchair users might be
whenua, assessors and assessor
experienced, in-person or via
educators and students.
telehealth, and demystified what
We took a grass roots approach,
T’WAS could look like.
seeking the views of wheelchair
users, their families, specialist We are currently pursuing funding
and non-specialist assessors and for our next step, to take a detailed
Dr Fiona Graham.
technicians. We also sought the look into attempts to do telehealth
views of service managers, funders wheelchair assessments.
stakeholders was more timely
and policy writers, although We’ll map out the context around
assessment than the current in-
only recruited service managers. when T’WAS can work, doesn’t work
person system allowed. Frustration
Understanding the perspective of
with the current system was loudly and the steps that make it more
Māori was also a priority.
expressed. likely to be a positive outcome for
Over 12 months, 117 people everyone. We hope to create a freely
Māori were enthusiastic for
(including 47 wheelchair users, 49
T’WAS generally. While one Māori accessible resource for assessors and
wheelchair assessors, nine family
assessor questioned the quality wheelchair users as a key output of
members, six technicians and three
of whanaungatanga (relationship this next project.
service managers) shared their
building) for Māori through
views about a T’WAS through To access a series of publicly
telehealth, Māori wheelchair users
a survey, and 41 also through available workshops on telehealth
commented that telehealth could
interviews. Māori represented 12 that drew from study findings, go
level the playing field, and improve
percent of responses. to: https://www.youtube.com/
the experience of being culturally
Surprisingly, most respondents safe. As one Māori wheelchair user watch?v=YebdoSmNAaU.
thought T’WAS was a good idea, put it: To access full copies of the
although cautioned that it shouldn’t peer reviewed articles email
“I think having it [wheelchair
be the only option. fi.graham@otago.ac.nz
assessment] done by a video
Unlike our scoping review findings, link could improve the [cultural Special thanks to our advisory
assessors were enthusiastic about it, and personal] safety of these group members: Pete Williams,
although few of them were using it. consultations…You can just hang up Hemakumar Devan, Siobhan Jansen,
Wheelchair users, including Māori, if you feel unsafe. You know you have
Rita Robinson, Johnny Bourke, David
were better equipped than assessors control in that moment because it’s
Hood, Stephanie Thompson and
with the technology in place to meet a lot more even playing field than
Michael Nolan. R
via telehealth. Tablets seemed to be when therapists are in your house.”
the optimal hardware and simple, We have already shared the Dr Fiona (Fi) Graham is a Senior
off the shelf software (e.g., Zoom) findings from this study with Lecturer in the Rehabilitation Teaching
was preferred. assessors through several and Research Unit in the University of
The key impact voiced by all professional development workshops Otago’s Department Of Medicine.
InTouch magazine Autumn 2021 | 21You can also read
