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InTouch
KIA NOHO TATA Inclusive | Inspiring | Informative Spring 21 Issue 111
Ready, set, roll
Neil is ready to roll for
our annual appeal
Yes, you can…
Taking inclusive travel
to the next level
Young, strong
and independent
Brittney is giving back
to the community
Contents
PO Box 12063, Penrose,
Auckland 1642, New Zealand. FEATURES
Freephone 0800 800 337
NZ Phone: (09) 815 0247
International prefix (00649) 10
Editor: MDANZ National Support Office
info@mda.org.nz
Ready, set, roll
0800 800 337 Neil Singh is ready to roll
Design: The Artset for our annual appeal.
the.artset@gmail.com
www.theartset.design
Cover photography: Hamish Melville
www.hamishmelville.com
Contributions: We welcome
contributions, comments and
letters to the editor. We thank all
contributors to this edition. 12
Subscriptions: In Touch is available Yes, you can… raft,
free to people with neuromuscular
conditions, their families, health and
paraglide, sea-kayak
education professionals and other
Taking inclusive travel to the next level.
interested people.
Advertising: In Touch welcomes
advertising enquiries. For a rate card,
please contact the MDANZ office.
Printer: Benefitz DMA Limited
benefitz.co.nz
0800 42 36 33
14
The opinions and views expressed in
this magazine are not necessarily those Life-changing
of the Muscular Dystrophy Association.
throat surgery a
All material in this magazine is
copyright. You must therefore contact turning point
the editor for permission before
Eating difficulties, combined
copying or reproducing any of it.
with mobility issues, were having
Charities Commission Registration: a major impact.
CC31123
ISSN 1179-2116
MDANZ would like to thank Nick Lingard
Foundation
the following supporters:
Spring 2021 | Volume 111
REGULAR FEATURES cont... 23 Work and Income:
What it can do to help
2 Kōrero with Trevor 16 Young, strong and Work and Income explains ways
From the desk of the Chairperson. living independently it can help MDANZ members.
Brittney’s giving back to the
MDANZ NEWS community that supported her.
YOUR CONDITION
IN REVIEW
3 MDANZ staff
on the move 24 Managing EDMD
Two welcomes and a farewell. EDMD affects both men and
women, with first symptoms
4 A distraction usually appearing between
the ages of 17 and 40.
and an escape
When dealing with trauma,
18 Creative and practical
role-playing games gave Scott a
Daniel Lyall is finding solutions
new world to be immersed in.
with a 3D printer.
5 A family favourite
20 Joy’s journey
with a Mexican twist
Real life lessons learnt on
Simple and tasty corn fritters.
the Duke of Ed programme.
6 Amazing opportunities
There’s a lot of hard work OPPORTUNITY 26 Life is there for living
involved in completing the Marcus Gower says when his
Duke of Ed Award. diagnosis came, the “jigsaw”
started falling into place - finally.
CLINICAL
PERSPECTIVES
27 Genetic testing evolving
22 Help entering
Even if you have seen a
8 Wish coming true the workforce geneticist in the past, there may
Paige Subritzky is counting The Be. Lab team are on hand be more information available
down the days. to help you into employment. today to help with a diagnosis.
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 Trevor
Working through the challenges.
The past few months have seen New Zealander’s Our team of Fieldworkers provide personalised support
resilience challenged; with wild weather hitting our and education right from diagnosis. Even if you have
Southern Region, the trans-Tasman bubble affected been a member for many years, please do not hesitate to
by a Covid-19 outbreak and the usual ills and chills reach out to your Fieldworker for assistance.
winter brings. I am excited to announce a new Fieldworker has started
However, Kiwis are known for their strength and in the Northern Region, Michael Schneider. You can read
determination to get through challenging times more about him on page 3.
and none more so than Jezza Williams. His story is MDANZ can also support you via the Bradley Jenkin
inspirational, and I hope you find it as motivating as I Memorial Fund which provides discretionary grants
did. Jezza set himself a big challenge – making the for members to access opportunities and specialised
adventure tourism industry accessible – and won (page resources that enable them to achieve or overcome their
12). With only a few months left in the year, I encourage challenges. Daniel Lyall, a member from Christchurch,
you to set yourself a challenge too! shares his story on page 18 of how the grant has helped
Our annual appeal is coming up this month and it’s him design and produce products using a 3D printer to
an incredibly exciting new fundraising campaign called help himself and other members.
Roll 1k for MDA. I hope you enjoy the warmer days spring brings and I
The challenge is to complete 1km in distance using look forward to hearing all about your challenges for the
any kind of wheels, raising awareness and vital funds for Roll 1k for MDA fundraiser.
MDANZ along the way. Mauria te pono – believe in yourself.
This is a fun and inclusive campaign that all your family,
friends and colleagues can get behind. I encourage
you to sign up, spread the word and get creative with
the wheels you use. This is the perfect opportunity to
Trevor Jenkin
challenge YOU.
National Executive Chairperson
Challenges in life can be difficult to overcome, whether
physically or mentally, but can be done with willpower,
determination, and support.
Support is one area where MDANZ can assist you and
your whanau through our Fieldwork service.
2 | InTouch magazine Spring 2021
MDANZ
Useful updates for
MDANZ members news
MDANZ staff Mike joined the Northern branch
committee a few years later where
It’s great having her knowledge and
experience back on the team, with her
on the move he has held the roles of committee
member, branch representative on the
calm approach and can-do attitude.
Our Communications and Marketing
National Council and branch Vice-Chair. Advisor Melanie Louden is leaving
This edition we welcome Prior to joining MDANZ as a staff MDANZ after joining the National
a new staff member and a member in July, Mike was working as Support Office team in October 2020.
returning team member to a Community Support Coordinator for Melanie soon became our ‘go to’ girl
the MDANZ family while we CCS Disability Action. at the National Office. Not only has
farewell another. He is looking forward to meeting she looked after our communications
members and being available to assist and marketing, she also took on extra
them however he can. We’re delighted duties in the Member Services and
Mike Schneider has joined the team at to have Mike join our team. Executive Assistant areas while the
the Northern branch as a Fieldworker. MDANZ is pleased to welcome roles were vacant.
Mike is no stranger to MDANZ – he Natalie Foote back to the team at We are so incredibly grateful for all
and his family have been members of the National Support Office. Natalie her hard work and dedication. She
the organisation since their son was had been on maternity leave after has done an incredible job and we
diagnosed with Duchenne muscular having her second child and returned are going to miss her and all that
dystrophy in 2011. to her Executive Assistant role in July. she’s brought to MDANZ. N
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MDANZ
news
A distraction and an escape
When Scott Boyle was dealing with pain, illness, death and PTSD, it was role-playing
games that pulled him through and gave him a new world to immerse himself in.
So there I was – assembling a team Until that year I had mostly played
of the most dangerous and efficient the likes of Halo and Call of Duty,
warriors in the galaxy. focusing on multiplayer with my
I had a ship, a loyal crew, and the friends.
goal of stopping a mysterious race However now I needed something
from abducting thousands of human with a narrative, something that
colonists. could help me forget the damage,
My crew and I fought countless if only for a few hours.
battles and stared death in the face, It was then that I discovered the
laughing at its shadowy visage, and beauty of role-playing games (RPGs),
defying the odds by surviving an the genre that would dominate my
inconceivable suicide mission. future preferences and give me the
It was a journey of discovery and power of choice.
defiance. In RPGs I could create my character
And then, by some twisted form Scott Boyle. and immerse myself in a new world,
of cosmic humour, I was pulled from one where I wasn’t a broken mess.
that world and back into ours by the I made terrible choices to numb Those of us who endure our
wailing of sirens. Rushed to hospital myself, pushed people away, and conditions have all dreamed about life
in a blur of fatigue and pain, with that entered into bad relationships without them and being capable of
dark spectre snapping at my heels. because I didn’t care. both ordinary and extraordinary feats.
But this wasn’t the first time, and it I had stared Death in the face, And thanks to those games, I was.
wouldn’t be the last. facing its formidable visage, but When I look back at that year and
instead of laughing like in the game, all the hardships I was subjected to,
2011 was perhaps the most
I was broken. I realise that while my friends and
challenging year of my life. I suffered
a horrible accident that left both of So, why share this sob story? family helped me immensely, gaming
my legs and ankles fractured. Well, back then I had a lot of free was what gave me an escape.
That trauma then led to multiple time while my body became a It helped me to cope with the pain
bouts of pneumonia, leaving me a battlefield. and all the damage. And in the future,
tired and hollow shell of who I had I binged numerous shows, I expect it’ll aid me again. N
once been. watched a lot of films, and burned
Scott Boyle is MDANZ’s
In that year I almost died four times, through a small library worth of
National Vice Chairperson.
and the effect of everything that novels.
happened cursed me with PTSD. The pain from my legs was ever
That part was genuinely worse than present and the chaos in my mind
the accident and pain. In truth it took clouded my every thought.
me years to manage and recover I needed a distraction. An escape.
from the psychological torment. And gaming delivered!
4 | InTouch magazine Spring 2021
MDANZ
news
A family favourite with a Mexican twist
Dietitian Julia Scott says corn fritters make a “super simple, tasty and healthy brunch, lunch or dinner”.
Julia Scott is a dietitian with a passion • Add in beaten eggs and creamed
for holistic health and encouraging style corn. Fold in whole corn
people to live their best life. kernels and coriander.
“Eating well is important but so is • Heat 1 Tbsp of olive oil in a frying
getting our bodies moving, allowing pan over medium heat. Place
ourselves to have rest, meditation spoonfuls of the corn fritter
and mindfulness, and fun with family mixture into the pan and cook for
and friends.” 3-4 minutes until bubbles appear.
She believes the best diet is one Turn and cook the other side for
you can stick to so her goal is to help another 3-4 minutes until golden
Corn is high in fibre, vitamin C, B vitamins,
people create healthy habits that lead and cooked through. Add more
magnesium and potassium.
to sustainable lifestyle changes. oil in between batches if needed.
• 400g tin corn kernels, drained Keep warm in the oven.
Julia is a New Zealand Registered
Dietitian. She has a Master of Science • Pinch ground coriander • Mix salsa ingredients together in
Majoring in Nutrition and Dietetics, • 2 avocados a bowl.
and a Bachelor of Science Majoring in • Serve corn fritters topped with
Salsa salsa and sliced avocado.
Human Nutrition. She is happy to share
her recipes with MDANZ members. • 1 tin chopped tomatoes Makes 15 fritters. N
• ½ red onion, finely diced
Mexican Corn Fritters • ½ cucumber, diced
with Salsa and Avo • Juice of 1 lemon
• 2 Tbsp fresh coriander, chopped
Ingredients
(or 2 tsp ground)
• ½ cup self-raising flour
• Pinch of chilli flakes (optional) You can follow Julia on
• ¼ tsp salt
Facebook: @JuliaScottDietitian
• 2 eggs, whisked with a fork Instructions Instagram: @juliascott_dietitian
• 400g tin creamed corn • Sift flour and salt into a mixing bowl. Or on her website: www.juliascott.co.nz
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InTouch magazine Spring 2021 | 5
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MDANZ
news
Amazing opportunities for
our youth members
There’s a lot of hard work involved in completing the Duke of Edinburgh Award,
but the effort is worth it, writes Award Leader Marty Price.
This last year has been somewhat Two Dukies are doing their Silver
different to the years since setting Award – Dylan Schneider from
MDANZ up as a licensed award unit Auckland and Jack Lovett-Hurst from
of the Duke of Edinburgh’s Hillary Invercargill.
Award in 2016. The range of goals our Dukies
Having Covid on our doorstep in are taking part in include public
2020 and our country going into speaking, photography, swimming,
lockdown meant a whole new set-up skim boarding, sailing, volunteering in
for our Dukies who were unable to a Sexuality And Gender Acceptance
access their community and undertake group, and cooking.
their usual goals/sections of the award. We will be working with them to
Our Dukies had to think outside the look at what they would like to do for
box and come up with ideas of doing the Adventurous Journey – we can
goals from within their surroundings. Marty Price. meet as a group over a weekend, or
Some were able to do this, whereas Dukies can complete it on their own
others had to wait to re-engage while I also have an app so I can oversee over two days.
the country went through the stages all the Dukies and their progress. All Dukies have worked exceptionally
of getting back to Level One. It gives me the opportunity to hard and have done well to keep
I commend all our Dukies that keep an eye on each member to see motivated. It is a lot of hard work, but
stuck it out and kept their motivation if they are working through things the outcome is so worth it.
through this time as it was not easy consistently; if not, I will get in touch We are open to more MDANZ
for anyone, including myself as to see if I can help them. members taking part in the Duke of
Award Leader. Sometimes other things like school Edinburgh program, and Jack and
This year more young MDANZ exams, other activities or family Dylan would be great contacts for
members are showing an interest matters might be taking them away anyone wanting to chat about the
in taking on the Duke of Edinburgh from progressing with their goals. amazing opportunities available
programme. We gained two new It’s up to me to help where I can, to through the award. N
young Dukies earlier this year and make it easier for our Dukies to get
The Duke of Edinburgh’s Hillary Award
I welcome them to this exciting their goals signed off.
is open to MDANZ members aged
opportunity that will open up new Currently five Dukies are doing the
14 to 24. For more information go to:
avenues for them. Bronze Award – Ryan O’Rourke from
www.mda.org.nz and click on
The set-up for recording goals has Gore, Joy Gutschlag from Nelson (you
“What We Offer”.
improved over the years – all Dukies can read her story on page 20), Asher
have an app which records the hours Hovell from Whangarei and Camille
they do, and they can look over their Peterson and Eden Hinchey, both
progress in real time. from Auckland.
6 | InTouch magazine Spring 2021
MDANZ
news
A cup of tea and a catch up
with ... Jackie Stewart
Each issue we introduce a MDANZ team member.
How long have you worked for the of an acapella (unaccompanied) choir
Muscular Dystrophy Association called Sunnyside Up. We sing mainly
and what do you do? gospel and world music.
I started with MDANZ in March I also enjoy attending concerts and
2020 – two weeks before we went musical theatre.
into lockdown. I am the Fieldworker I love plants and have lots of pot
for the Southern Region, which plants. I especially like the satisfaction
covers Otago, Southland, Central of growing them from cuttings into
Otago. I am here to provide support, large specimens.
If resources and funds weren’t
information and encouragement to During the months of daylight
an issue, what would you like
our members as well as educate the saving my husband and I volunteer
to see our members enjoying?
wider community about muscular in the community garden located
dystrophy. I would love to see our members within the grounds of our church.
enjoying the freedom and The fruit and vegetables are then
What qualifies as a great day autonomy to make life choices put in a little kiosk for members of
at work for you? according to their individual the community to access.
Being able to achieve something that potential with all systemic and
Finally, I love to walk although
will, in some way, make a difference discriminatory barriers removed.
this requires a bit more effort
for our members. This can be an issue and dedication in the winter
50cmWhatHigh
are you Toilet
passionatePans
about?
specific to an individual or something months. N
• extra height toilet
universal that may be affecting Singing would be one of my greatest
• passions
no ugly 50cm High
numerous members. – I am seat risers
currently a member
• bidet options • extra h
• hygiene access options • no ugly
50cm High Toilet Pans • bidet o
• extra height toilet • hygien
• no ugly seat risers
• bidet options
50cm High Toilet Pans
• hygiene access options
• extra height
50cm High Toilettoilet
Pans
no ugly
• extra seat toilet
height risers
• bidet options
no ugly seat risers
hygiene
• bidet access options
options
info@sapsltd.nz • hygiene access options
09 524 8639
info@sapsltd.nz
info@sapsltd.nz 09 524 8639InTouch magazine Spring 2021 | 7
09 524 8639
MDANZ
news
South Island wish coming true
Paige Subritzky is counting down to her big family holiday,
writes the team from Make-A-Wish New Zealand.
For Paige Subritzky, a 13-year-old makeovers, meeting celebrities or
living with congenital muscular swimming with dolphins, the aim of
dystrophy, most of her life has Make-A-Wish is to always fulfil their
been spent close to home with one true wish.
her family. For wish children like Paige, a wish
Through every treatment and not only creates an opportunity for
surgery, her family comes together them to have something to look
as her support system. forward to, but it also serves as a
“We take every day as it comes. lasting positive impact for them and
That’s why we’re so close as a family their families.
unit,” says Paige’s mother, Joycey. “This wish will be a lifelong
The family stays close to home memory for our family,” says Joycey.
in Kaitaia and enjoys taking part “We are really grateful for this wish
in activities like fishing, diving and and appreciate those that will help
hunting. Paige Subritzky is excitedly planning her Make- make this wish happen.” N
A-Wish trip to the South Island with her family.
When asked what her wish would
For more information about Make-
be, Paige knew it would involve two
thrills like bungee jumping with her A-Wish, or to apply for a wish go to
things: expanding her bubble and
sister (if her mum will allow it, of www.makeawish.org.nz/wishes.
including her family.
course). If you would like to help Paige’s wish
Make-A-Wish New Zealand is At Make-A-Wish, our mission is to to visit the South Island with her
making the MDANZ Northern Region grant the wishes of children who family come true, please donate
member’s dream come true. have critical illnesses to give them today at www.makeawish.org.nz
In the October school holidays, hope, strength and joy. or by scanning the QR code below.
Paige and her family will fly to the We believe that these wishes are Your donation will make an
South Island where they will begin transformational for the child and extraordinary difference for Paige.
their campervan adventure. therefore all our work is based on
Paige has looked through maps, positive psychology and through the
brochures and pictures with her implementation of what we call ‘the
siblings and started to make a list of wish journey’.
activities they are excited to do. Every wish is unique and special,
“When I talk with my siblings about as is each child or teenager, and
the places we want to go, that’s when each wish is only limited by their
I get really excited about my wish.” imagination.
Paige is looking forward to From going on scary rides with
experiencing all kinds of new things: siblings or creating magical memories
flying in a plane for the first time, with family members, to princess
seeing real snow, and even some playhouses, tree huts, bedroom
8 | InTouch magazine Spring 2021MDANZ
news
DPO Coalition Update
Alison Riseborough, MDANZ’s representative on the Disabled People’s
Organisation Coalition, provides members with an update on the latest issues.
Accessible voting – Electoral accommodation-persons-disabilities- areas, immediate opportunities
Commission: The DPO Coalition new-zealand. and actions. The DPO Coalition will
met with the Chief Electoral Officer continue to meet regularly with the
Learning Support Action Plan: The
to discuss ensuring that the 2023 Transition Unit.
Ministry of Education is developing
General Election is fully accessible for
Terms of Reference for a review of Accessibility legislation: The
disabled people.
learning support for students with coalition also continued its regular
Topics raised by the DPO Coalition
the highest level of needs. engagement with the Ministry of
included: Ensuring access to all
New roles called Learning Support Social Development policy team
information (including candidate
Coordinators are being introduced. about options for accessibility
information), accessible voting
They are intended to build teacher legislation. This work has the
locations and online voting.
capacity, provide support for students potential to set down the
An election access fund is being
and are a point of contact for family/ Government’s requirements for
created to support the participation
whanau. These coordinators work with what all parts of New Zealand
of disabled people as candidates in
schools’ leadership teams to identify society, business and government
Parliamentary elections. Consultation
and plan for the needs of children who must do to deliver accessibility for
on the fund will be held this year
require additional support.
and it will be open for applications disabled people on an equal basis
The Ministry of Education has also with others. The coalition learned
in 2022. The Electoral Commission is
implemented a new practice model the Minister for Disability Issues
updating its Disability Strategy 2020.
for learning support called He Pikorua updated her Cabinet colleagues
The DPO Coalition looks forward to
which is available on the Ministry of in May, and they are broadly
engagement as the new strategy is
Education website.
developed. supportive of the approach
Literacy and numeracy strategies: towards accessibility legislation.
Reasonable Accommodations
The Ministry of Education is
of persons with disabilities: The Opt-in guidelines to support
developing new strategies for
Reasonable Accommodations guide disabled people to attend arts,
literacy and numeracy. The goal of
published by the Independent culture and sporting events: The
refreshing the strategies is to make
Monitoring Mechanism is being Ministry of Social Development
the curriculum more bicultural and
updated. The coalition has suggested would like to better understand
inclusive.
that the revised guide could place the needs of disabled people
more emphasis on the obligation Health and Disability System attending events, and the needs of
of government and businesses to Transition Unit work programme: event providers. It intends to develop
ensure equitable access. In May the DPO Coalition began a plan that will enable disabled
It is also important for the guide meeting with the Transition Unit people to take a “companion” to
to promote positive examples of responsible for implementing the events and performances at a lower
reasonable accommodations being health reforms. In June, the DPO or no cost. N
made. You can find the current Coalition and the Transition Unit
guide here: www.ombudsman. discussed the draft work You can contact Alison at
parliament.nz/resources/reasonable- programme. This identifies target alison.riseborough@mda.nz
InTouch magazine Spring 2021 | 9R e a d y , s e t , r o ll
Neil Singh is ready to roll
for our annual appeal
20-26 September
This year’s national annual appeal is something
wheelie fun, interactive, and even better – anyone www.roll1kforMDA.org.nz
and everyone can take part, writes Melanie Louden.
It relies on you
Roll 1k for MDA is a fundraising and awareness campaign
that relies on you, our valued In Touch readers, rolling
1km on any kind of wheels and fundraising amongst
family and friends.
Simply head over to www.roll1kforMDA.org.nz
to register and create your own fundraising page. Then
spread the word via email and social media, asking
people to either sign up to fundraise themselves, or
donate to your fundraising page.
You could roll 1km on a wheelchair, electric scooter,
skateboard, roller skates, push bike … or whatever
creative wheel idea you can come up with.
Spend the month of September gathering donations –
and once you’ve raised $50 you’ll receive a free
Roll 1k for MDA t-shirt. Complete your roll during the
week of September 20-26.
All the funds raised will go to the region they were
collected in to contribute to our vital Fieldwork Service
which provides essential support to members and
their families.
We’re delighted to have sponsors providing wheelie
awesome prizes for the individual and team that raises
the most money.
Northern Region member Neil Singh is the face of
the campaign and his parents mum Yasha Aggarwal
and dad Kuldeep Singh are sharing their story
to help raise awareness and funds.
10 | InTouch magazine Spring 2021Feature | Ready, set, roll
Neil’s story: When you meet Neil Singh for the first time where they met other parents who knew
you can’t help but be blown away by this young man. what they were going through.
He’s 10 years old, yet he has the confidence of a wise and “They knew everything, every emotion
inquisitive person. without us mentioning it,” the couple say.
He’s only 109.5cm tall, yet he commands the room with his “MDANZ has held our hand and helped us with
charming, extrovert personality. Neil loves to ask questions and various stages of Neil’s condition, getting information.
can hold a meaningful conversation with any one of any age. The Fieldworkers have been available as a support person
He has a love of trains, music and Lego, Pokemon when we needed them.”
and Beyblades. Neil now has a power wheelchair that he uses at school
He also has Duchenne muscular dystrophy - a progressive and for long distances. He gets tired easily and his parents
and genetic muscle disease that affects approximately one must watch his activities throughout the day so they can
out of every 3600 baby boys. manage his fatigue.
It affects many parts of the body, which results in “He would love to play soccer, or just run around,
deterioration of the skeletal, heart and lung muscles. and play video games with his buddies. Unfortunately,
regular soccer is not an option. This is due to his reduced
When Neil wasn’t reaching his toddler milestones, mum
ability to run like other children, fatigue and, most
Yasha Aggarwal and dad Kuldeep Singh knew something
importantly, safety.
wasn’t right.
“His hands get tired if he plays video games, his legs
“He was late in standing, walking, running from the get-go,
get tired if he runs around.”
but every time we were reassured by health professionals
that he was doing things in a normal time frame, and we did ‘Fatigue management’ played a big part in Neil starting
not need to be worried about his development,” Yasha says. school and while Neil was very excited about it, his
parents were quite anxious.
They asked again to see a Starship doctor and this time
they happened to meet with a pediatrician who was familiar However, the move to school life couldn’t have
with Duchenne, although Yasha and Kuldeep didn’t know gone better with the school being very engaged and
that at the time. approachable, and doing an excellent job of communicating
with Yasha and Kuldeep, which helped everyone settle in.
Days later, when it was time to go back to Starship to get
the results of the tests, Yasha took Neil to the appointment Five years down the track and Neil “loves” school, with art
by herself only to realise she was going to be seen by the and music being his favourite activities.
neuromuscular clinic instead of general pediatrics. “He has a close group of friends that he looks forward
“Things did not feel right, and my concern grew while I to meeting every day. He is performing well and reaching
waited. It was at its peak when they said that Neil can go to his goals.”
the playroom while I discuss the results with the doctors, Yasha and Kuldeep say Neil is aware that his condition
who then told me the diagnosis. It was Duchenne. will progress. “He talks about not being able to walk one
“I was without Kuldeep listening to the diagnosis. I was day, which is heartbreaking for him and us.”
not told to bring a support person. However, the family is staying strong
“I felt sad, angry and was in disbelief. They told us that our and united. “We are taking each
beautiful boy had a terrible condition.” day as it comes, and we
prefer not to look too far
Yasha was given some space to take in the news and call
ahead in the future.
her husband, who rushed to Starship to be with his family.
“The prognosis is not
“We sat, holding each other, crying and trying to pull
hidden but we’d rather
ourselves together before we saw Neil again,” she says.
not think about it.”
In need of support, Yasha and Kuldeep reached out to
the Muscular Dystrophy Association of New Zealand Photos by Hamish Melville.Jezza Williams, front, is a tetraplegic
who is an expert in inclusive tourism.
Yes, you can… raft,
paraglide, sea-kayak
Taking inclusive travel to the next level
From an able-bodied expert in adventure tourism to a world expert in inclusive tourism and
travel, Jezza Williams shares his love for ensuring everyBODY can experience adventure.
Recently I was talking with a young woman about why Working in wild environments, I chose a life of risk-taking
she doesn’t get out and enjoy adventure. and exploring limits.
Her reply was: “Being born with a disability, everything Adventure has taught me life lessons, it prepared me for
was impossible when I was a child, so it was put in the too anything and encouraged me to live to my potential.
hard basket and that’s where it stayed.” So, when a life-changing canyoning accident in the
Well, things have changed, and adventure experiences Swiss Alps left me with a C5 spinal cord injury, I was ready
are now becoming inclusive to all. to accept the challenge.
I feel privileged. Ever since my feet touched the ground After a lifetime of experience in the adventure industry
they wanted to adventure. my initial fear was that I’d never be able to get amongst
In fact, following my passion took me on a journey of the action again.
two decades of guiding internationally on spectacular After researching the possibilities for someone that was
rivers and canyons, adventuring into lost jungles, in my new predicament to experience adventure, I was
patrolling steep and deep mountains. blown away at the lack of opportunity and infrastructure.
12 | InTouch magazine Spring 2021Feature | Yes, you can… raft, paraglide, sea-kayak
A little taste of the most popular destinations:
As a tetraplegic, with my • Queenstown: Paragliding to packrafting, canyon
swinging or the world’s only commercial jet sprint
experience I’m the perfect guinea are just a few.
pig, realising what is possible, • Franz Josef: Snow landings with a ski chair, skydiving
20,000ft above, or sea-kayaking through ancient
practical and safe. So, if my body rainforests.
can do it, most bodies can do it. • Abel Tasman: Golden beaches, sea kayaking eco
tours or a waka cultural experience.
• Auckland: Whitewater park, whale encounters or
skydive from 20,000ft.
Changing my focus, I decided to open the adventure
industry to all and in 2012 Makingtrax was born. There are no excuses, so get busy living!!
I originally opened with the experiences that I knew, Makingtrax recently became a charitable trust – The
and funnily enough these were the most difficult – rafting, Makingtrax Foundation. Our vision is to see all adventure
paragliding, sea kayaking etc. operators, outdoor educators, the tourism industry,
Makingtrax focuses on the experience rather than the Department of Conservation and cycleways embracing
infrastructure. inclusion, whilst having adoption and education in place to
It is called Inclusive Tourism, a little different than make these experiences possible for everyBODY. To learn more
Accessible Tourism where the focus is on infrastructure. about Makingtrax go to www.makingtrax.co.nz.
In the adventure industry making everything accessible is
just not possible or practical.
Inclusive Tourism is about opening possibilities. We do
this through:
• Education – to the industry.
• Information – to you the client.
• Cooperation – between the operator and you.
• Adaptation – only if required.
• Promotion – providing awareness to possibilities.
As a tetraplegic, with my experience I’m the perfect guinea
pig, realising what is possible, practical and safe. So, if my
body can do it, most bodies can do it.
The Inclusive Directory on the Makingtrax website has
all our Inclusive Movement Operators in one place and
relevant information for anyBODY to have the confidence
to book their experience.
We believe everyone should be able to rock up to our
inclusive operators and enjoy an adventure. All adaptive
equipment is located at the inclusive operators.
Makingtrax also designs and manufacturers support
seats and other adaptive systems to open up everything Makingtrax has opened up all types of outdoor adventure activities
from whitewater rafting through to paragliding. for people with disabilities.
InTouch magazine Spring 2021 | 13Life-changing throat
surgery a turning point
Eating difficulties, combined with mobility
issues, were having a major impact
A diet of soft pureed food has been replaced with an almost normal
diet, writes MDANZ Canterbury member Mary Fargher.
My name is Mary Fargher, and I am 74 years old. I was
diagnosed with inclusion body myositis (IBM) in 2016
following an MRI, nerve conduction tests, and then a
muscle biopsy taken from my upper arm.
Inclusion body myositis is an inflammatory muscle
disease characterised by chronic inflammation with slowly
progressive weakness of both the distal and proximal
muscles.
It is most apparent in the muscles of the wrist, fingers
and thighs.
Prior to my diagnosis I had experienced weakening of
my arms and thighs for a period of three to four years
and was prone to falling, tripping and it was increasingly
difficult to get up off chairs or the floor.
I had been attending a pilates class at a local
physiotherapy clinic, and although the instructor (a Mary Fargher can eat and drink with confidence following surgery.
physiotherapist) gave me extra exercises to do, it did
not help. She was concerned enough to consult with Over the last five years I have also developed dysphagia
my GP who then referred me to Dr Desiree Fernandez, a (difficulty swallowing).
consultant neurologist. Swallowing became increasingly difficult with constant
I am now unable to walk very far without a walking stick choking and coughing on solid food as well as drinks.
and have a mobility scooter. I purchased one that can be This resulted in me having to cut back on socialising
dismantled to fit into the boot of a car which is great for and eating out and having to resort to a diet of soft
going further afield than just around the block. puréed food.
My left hand and arm are very weak, and I am unable Following a referral from a Nelson ENT surgeon to Mr
to carry anything of any weight. Having been an active Robert Allison at Christchurch Hospital, I underwent
gardener and quilter in the past this has impacted my life a pharyngoscopy and cricopharygeal myotomy in
considerably. November 2020.
14 | InTouch magazine Spring 2021Feature | Life-changing throat surgery a turning point
My social life has returned, and
I can eat out and enjoy a good
coffee again without continually
worrying about choking on
anything and everything.
This operation involves the surgical sectioning of
the upper esophageal sphincter. Dysphagia stops the Giving made simple
esophageal sphincter from relaxing to allow food to enter
the esophagus or it relaxes in an uncoordinated manner.
By making a steady, regular and manageable
The difficulties with eating combined with my mobility
donation each month you can help make sure
were having a major impact on my life.
The throat surgery was a huge turning point for me
Kiwis living with one of 70 neuromuscular
and within two to three weeks I was able to return to an conditions receive the support they need.
almost normal diet again.
I have a very unobtrusive scar in the folds of my neck You can choose how much, how often,
which does not cause me any issues. and how long you want to help us for.
I was in hospital for two nights and although a bit
uncomfortable for a few days it was nothing compared We’ll then provide all the information you need
to the life-changing effect it has had for me. to set up a direct debit or automatic payment with
My social life has returned, and I can eat out and enjoy your bank. At the end of the tax year, we’ll send
a good coffee again without continually worrying about
choking on anything and everything.
you a single receipt for all your donations.
The surgery didn’t create very much anxiety for me as I
Email us at accounts@mda.org.nz
was desperate to try anything which might help.
or call us on 0800 800 337 and we’ll work
Due to the Covid-19 lockdown I had to wait 10 months
for the surgery so I had a lot of time to think about it. with you to put a payment plan in place.
A biopsy taken from the muscle in my throat confirmed
that it was the IBM that had caused the eating difficulties
Thank you. We couldn’t do what we do without
that I had been experiencing.
If I have these issues again, I have been advised that the support of generous donors like you.
there is every likelihood that I could have a repeat
procedure. www.mda.org.nz
I became a member of MDANZ in 2016, just after
my IBM diagnosis and have found the Fieldworkers, the
In Touch magazine, and regular emails, particularly in
regard to Covid issues, informative and reassuring.
InTouch magazine Spring 2021 | 15Young, strong and
living independently
Brittney is giving back to the community that supported her
Brittney Steele has a simple plan when it comes to
succeeding in life – just “keep trying”. By Melanie Louden.
Brittney Steele has always been determined, persistent,
and wanting to live life her way.
So, it’s no surprise that the 24-year-old Invercargill
resident lives on her own and works in a job that sees her
giving back to the community that helped her, while living
with Friedreich ataxia.
Brittney was diagnosed with the condition on New
Year’s Eve, when she was seven-years-old.
“Telling a seven-year-old she would have a wheelchair
in the next couple of years didn’t sound horrible, because I
didn’t fully understand,” she says.
“Mum and Dad always knew there was something a
little different with me. I was ‘lazy’ (my words not theirs) - I
would rather stay in and watch TV than go outside and run
and play with my two older sisters.
“When I would go to the toilet when I was younger
[before diagnosis], I would come back to what I was doing
with no knickers on. We didn’t realise till years later that it
Brittney Steele is “obsessed” with candles so rather than spending money
was because I couldn’t hold my balance on one leg to put
on them, she started making them. Photo: Shannon Steele.
them back on.”
Brittney, who grew up in Mataura, Southland, got her stayed at school and I used a walking frame at home or my
first manual wheelchair when she was 10, and an electric manual chair, depending on how tired I was.”
wheelchair the following year while living with her dad in They were also quick to step in if anyone was mean to
Cromwell. Brittney or “looked at me funny”. She says it was a comfort to
“At first I thought it was awesome because I didn’t have have them there, but at the same time she “hated school”.
to be in it all the time,” she says. Brittney initially left school when she was 16, but went
Brittney later returned to Mataura and recalls her two back six months later and stayed till the end of year 13, at
older sisters, Jamie and Shannon, being very protective of which point she moved to Invercargill.
her when they were all at college together. “Ever since I was little, I didn’t want mum to be my
“They carried me on and off the school bus – my chair caregiver and I didn’t want my family to look after me.”
16 | InTouch magazine Spring 2021So, she moved into accommodation provided by Pact.
Pact’s website says it provides “support to anyone with
a need so they can lead fulfilling lives in the community” –
everything from family/whanau support, respite, addiction
support through to accommodation and community
support, and much more.
“I moved to Pact because it was the only place I could
go. I moved in and out a few times.”
Brittney last moved out of Pact more than three years
ago and since then she has been living in a two-bedroom
flat with her cat Craig (named, simply, because it wasn’t
Research Grants 2021
a common name for a cat).
Neuromuscular Research New Zealand
She was determined to work at Pact, keen to give back
to the organisation that helped her, and she now works
is once again accepting funding applications
there four days a week as the youth consumer advisor. for research relevant to New Zealanders
“When I lived there, I always wanted to be staff there. living with neuromuscular conditions.
So they made a role just for me. I’ll go to the youth home
Proposals most likely to be considered will
and hang out, I’ll spend a day in the office, I’ll organise
things for the small groups.”
be those which address standards of care
(including best and/or innovative practice
And the job is rewarding. “Oh, I love it. It’s awesome. When
I was at the youth home, I would have wanted someone
in supporting people with neuromuscular
[that worked there] who was young and knows what it’s like.” conditions); effectiveness and/or cost benefit
When she’s not working, Brittney can be found making
of service delivery modes and interventions;
her own candles. “I’m obsessed with them. I used to spend prevalence and incidence of neuromuscular
so much money on them so I started making them two conditions; and proposals which extend
years ago.” existing research into treatment and cures.
She used to sell the candles on Facebook, but when
Research of a preliminary nature
that got too demanding she switched to making them
with the intention of developing further
for pleasure and giving them away as gifts.
proposals for substantial financial support
“I love it because this is something I can do. It’s super easy.”
from elsewhere will also be favoured.
Brittney can make candles with any scent requested
and says her favourite are the ones that smell like sweets – Closing date for applications is
especially Hubba Bubba and white chocolate. 17th September each year and we hope
“I love looking in second-hand shops for little tea cups to advise the outcome by 1st December.
and saucers, and jars [to make candles in]. I like it because
it’s something I made, which makes it even cooler.
Register your application in advance by emailing
“I can’t really cook anything, but I can make candles.”
nrft@mda.org.nz or go to the MDA’s website
Brittney says she’s proud of the fact that she does a lot of
www.mda.org.nz/Our-Research/Apply-for-Funding
things that young people her age normally do – like living
by herself and making her own money.
She says the key to making the most of life is being
persistent. “If I want something done, I have to keep trying.
I just have to do it. Even if it’s taking for ever.”Creative and practical
Finding solutions with a 3D printer
Funding from the Bradley Jenkin Memorial Fund means Daniel Lyall can keep making
3D items that make life easier for himself, and for other MDANZ members.
Switching from viticulture work on a vineyard to creating
things with a 3D printer might seem like an unusual leap,
but for Daniel Lyall it’s all about independence and quality
of life.
The Blenheim husband and father says it’s about making
life easier and making practical items cheaper.
3D printing, or additive manufacturing, is the
construction of a three-dimensional object, from a CAD
(Computer-Aided Design) model or a digital 3D model,
out of plastic, one layer at a time.
It can be used to make all sorts of items such as
furniture, wax castings for making jewellery, tools, tripods,
gift and novelty items, toys – and wheelchair accessories.
Daniel, who has Becker muscular dystrophy (BMD), has
Daniel Lyall at work. He has manufactured (from top to bottom)
made fun things – like a miniature Tardis light – as well as
a bottle opener; cup holder and side table.
practical things like a drink holder and a side table for his
wheelchair.
He says making things isn’t easy – he’s had plenty of
failed attempts, and he went on a course to learn how to Daniel says 3D printing means
manufacture things properly. things can be made at a fraction
“You’ve got to know how to design them in the first
place,” the 43-year-old says.
of the cost of purchasing them
The drink holder can be made in a day and uses brackets commercially, and he’s keen to sell
that mount to a tube on the his items to MDANZ members.
arm of a wheelchair. He’s made
cup holders of different sizes for
different cups.
The side table folds down have all been made on his 3D printer. Daniel also has
beside the wheelchair when plans to make a mechanical side table attachment that
it’s not in use so it doesn’t take will move into position and away again with the push of
up any extra space. Just like the a button.
Daniel Lyall’s minature Dr Who
cup holder, the whole thing, He says both items are easy to use as well as practical
Tardis light.
including a three-piece hinge, and, depending on a person’s level of mobility, they won’t
18 | InTouch magazine Spring 2021Feature | Creative and practical
need a carer to move or remove each item. things better. It can use fancier carbon fibre impregnated
“It’s all about independence and quality of life,” he adds. filaments which makes stuff really strong.”
Daniel, who worked on vineyards from the age of 18 He says 3D printing means things can be made at a
to 32, was diagnosed with BMD when he was 28 years fraction of the cost of purchasing them commercially, and
old. The diagnosis came after he gathered with family for he’s keen to sell his items to MDANZ members.
Christmas and he learnt a cousin had been diagnosed Daniel has been a member of MDANZ for 15 years now
with BMD. and is grateful for the support of the Fieldworkers.
“I knew something was wrong with me. I couldn’t ride “They’ve have given me ideas on how to make things
a bicycle anymore. I thought [my cousin’s diagnosis] might easier and what to do - they have suggestions. They are
explain things. doing a job they want to do.”
“But it took a long time to come to terms with it.” He appreciates “knowing someone is there that I can
When Daniel spoke to In Touch he had a few projects talk to” and that they can help get things sorted when
on the go – a tablet mount, a wheelchair attachment that issues arise.
could help people move their arm, and a robot arm.
Anyone who wants to discuss buying 3D printed cup
Daniel uses a design programme called Fusion 360 and is holders and side tables from Daniel can contact him via
considered one of their expert users (Autodesk Expert Elite). email - daniel_lyall@hotmail.com or check his website
He helps users make, fix and find solutions to whatever www.danielswheelchaircustomisations.weebly.com/
it is they want to make.
His 3D inspiration came about after he was talking
to then Fieldworker Paul Graham about how expensive The Bradley Jenkin
things like wheelchair accessories were.
Memorial Fund
“I looked at them and thought I could make that much
cheaper. I couldn’t get what I wanted – so I made it. It all The Bradley Jenkin Memorial Fund helps MDANZ
started from what I really needed at the time.” members with a neuromuscular condition receive
funding for access opportunities and specialised
Daniel, who has always enjoyed woodwork as a hobby,
resources that enable them to achieve freedom.
received funding from MDANZ’s Bradley Jenkin Memorial
Fund in 2019 to buy the 3D printer he currently uses. The fund has helped members purchase
specialised sports equipment, participate
“I asked for funding because the printer I had at the time
in sporting events, it has contributed towards
wasn’t all that great. I had lots of fails with it and it wasn’t
the cost of obtaining a mobility dog, provided
user friendly. The new one is easier to use, it’s enclosed
mobility equipment, and assisted with career
and it makes complex shapes easier to make. It just makes
development such as university and course fees.
For criteria, info
and to apply, go to
www.mda.org.nz
> What We Offer
Funds must be spent
within three months.
Applications close
January 31 • April 30 • July 31 • October 31
The wheelchair side table and cup holder.
InTouch magazine Spring 2021 | 19Joy’s journey to leadership
Real life lessons learnt on Duke of Ed programme
Joy Gutschlag has made the most of the many opportunities
offered by the Duke of Edinburgh’s Hillary Award.
Taking part in the Duke of Edinburgh’s Hillary Award has
produced plenty of positive spinoffs for Joy Gutschlag.
She’s moved out of home and therefore has had to take
responsibility for managing her condition, she’s enjoyed
having a positive impact on the people around her and,
the usually reserved 20-year-old, has had to “step out”.
She has also been able to indulge in her love of music.
In 2018 Joy was diagnosed with muscular dystrophy,
although she hasn’t yet received a full diagnosis, and she
promptly joined MDANZ.
When the Nelson resident became a member her then
Fieldworker Marty Price came to visit. Marty is also the
organisation’s Award Leader for the Duke of Edinburgh
programme and encouraged Joy to get involved.
“I liked the idea of being able to partake in it and do it
while having a disability. I think it’s really cool that you can
do something like this, even with a disability. I got to do
things I otherwise wouldn’t have done,” she says.
Joy Gutschlag is making the most of “stepping out” thanks to the support
“For me the biggest thing is that I got to take part in of the Duke of Edinburgh programme.
something. I felt included.”
The Duke of Edinburgh’s Hillary Award gives 14 to She says the swimming kept her focused and
24-year-olds the chance to challenge themselves, learn committed to a routine, while the service aspect “pushed
new skills and meet new people. me out of my comfort zone as a leader”.
Participants carry out tasks in three categories – physical “I had a bunch of teenage boys. I had no idea how to do
recreation; service; and skills, and go on an Adventurous it. I’m more of a reserved person and I really had to step
Journey, to complete bronze, silver, and gold levels. out. I had to take ownership and responsibility.”
They design their own programme, set goals and record Completing the Discipleship Training School for the
progress towards their achievement. Duke of Edinburgh skill activity meant moving out of
Joy has completed the bronze section by choosing home in October 2020, at the age of 19, and living at the
swimming for her physical recreation activity, being a YWAM campus.
youth group leader for Unite church for her service activity, That was a big step for Joy, who had been home-
and attending the Discipleship Training School at Youth schooled, as she had to take greater ownership of
With A Mission (YWAM) for her skill. managing her condition.
20 | InTouch magazine Spring 2021Feature | Joy’s journey to leadership
knees turned in. She had been keen on figure skating, but
couldn’t keep that up any more.
When she was 18 years old, she was diagnosed with
muscular dystrophy.
She says living with the impact muscular dystrophy has
on her everyday life is “just normal for me”, however, it does
mean she gets a lot of pain.
“I wear AFO’s (ankle foot orthosis) and I don’t have much
Joy Gutschlag has been supporting and encouraging teenagers as they muscle, so I have to watch every step I take so I don’t fall.”
build tiny homes for Nelson’s homeless.
Joy is grateful for the support she gets from MDANZ
In the process, she’s also learning an important lesson. and says meeting Marty and her current Fieldworker, Jane
“It’s okay to not keep up.” Hazlett, has been very important.
Not only does Joy study and live at YWAM (which equips “When I was diagnosed I knew nothing, I didn’t know
people to become missionaries) she also works there as a what muscular dystrophy was. It was really comforting to
volunteer. have someone there.”
She is currently supporting and encouraging teenagers MDANZ is a licensed Hillary Award provider, and can provide
as they build tiny homes for Nelson’s homeless. funding and direct support for members aged between 14 and
“It’s cool to know you’re having an impact.” 24 years who want to take on the challenge to achieve either
Joy says she is looking forward to the Adventurous bronze, silver or gold level awards. For more information go to
Journey section of the award, where the MDANZ Duke https://www.mda.org.nz/What-We-Offer/Duke-of-Edinburghs-
Hillary-Award.
of Edinburgh participants get together for an adventure,
particularly because she is yet to meet any other young
people with muscular dystrophy.
Joy has developed an interest in music over the last
three years, she’s learnt to play the piano and the guitar,
and has since picked up the violin.
Being a youth leader meant she had more opportunity
to play, and “learn the skills”.
She used to lead the youth group band and jokes, “I was
very…not good”.
“Even though I’m terrible, they let me have a go. Now
they don’t block their ears. It’s been really cool to have that
opportunity.”
Joy encourages other 14 to 24-year-olds to consider
taking part in the Duke of Edinburgh programme.
“Get out there and do it. Do things that you enjoy doing
– it’s a cool opportunity to do that.”
Joy’s health issues started when she was still very young.
“When I was 7-10 years old, I had a kidney condition that
made me really sick. My growth had been stunted because
I had been so sick.”
The Duke of Edinburgh programme has helped Joy Gutschlag indulge
Then when she was 12-13, Joy grew really fast and her in her love of music.
InTouch magazine Spring 2021 | 21You can also read
