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InTouch
KIA NOHO TATA Inclusive | Inspiring | Informative Winter 21 Issue 110
Now, that's
a great idea!
Gadgets that
members say make
their lives better
All aboard
Discovering the North Island's
hidden by-ways aboard the
Northern Explorer
Rolling through 2021
Alisha is living her best life
on and off the boccia court
Pathway to home
Daniel finds new freedom
in a simple concrete path
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
8
0800 800 337
Now, that’s
Design: The Artset
the.artset@gmail.com
a great idea!
Insta/facebook: @theartset Gadgets and products that members
Contributions: We welcome say make their lives better.
contributions, comments and
letters to the editor. We thank all
contributors to this edition.
Subscriptions: In Touch is available
free to people with neuromuscular
conditions, their families, health and
education professionals and other 14
interested people.
Pathway to home
Advertising: In Touch welcomes
advertising enquiries. For a rate card, Trepidation turns to freedom
please contact the MDANZ office. and equal opportunities.
Printer: Benefitz DMA Limited
benefitz.co.nz
0800 42 36 33
The opinions and views expressed in
this magazine are not necessarily those
of the Muscular Dystrophy Association.
16
All material in this magazine is All aboard
copyright. You must therefore contact
Exploring hidden by-ways on
the editor for permission before
copying or reproducing any of it. board the Northern Explorer.
Charities Commission Registration:
CC31123
ISSN 1179-2116
MDANZ would like to thank Nick Lingard
Foundation
the following supporters:
Winter 2021 | Volume 110
REGULAR FEATURES cont... YOUR CONDITION
IN REVIEW
2 Kōrero with Mike
From the desk of the Chairperson. 22 Becker muscular
dystrophy
Complications can be
MDANZ NEWS minimised by adhering to a
management programme.
3 AGM update 2021
Introducing the national 18 Rolling through 2021
council’s newest members. Alisha is living her best life on,
and off, the boccia court.
4 The benefits of gaming
Gaming started out as a way to
preserve Scott’s hand function TECH REPORT
and turned into a 17-year hobby.
20 Information pathways
5 A cup of tea and and Covid-19 24 Accepting support
a catch up with…
The benefits of creating from family and friends
Ross Paterson. mind maps to share online Paralympian, Tim Dempsey
information.
6 Charitable giving focuses on what he can do,
not what he can’t.
without cheques
There are plenty of other ways
donors can continue supporting CLINICAL
people with MD. PERSPECTIVES
7 Disability support 26 Diagnostic testing for
issues are not solely neurogenetic disorders
health issues 21 Creating accessible A genetics specialist answers
An update on the work solutions our questions about how the
of the Disabled People’s genetic testing regime works
Disability is no longer a
Organisations Coalition. in New Zealand.
barrier when it comes to
using technology.
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 Mike
Accessible transport is a hot topic.
Kia hora te marino, Kia whakapapa pounamu te moana, Persons Assembly, with transport consultancy MRCagney,
Hei huarahi e te rangi nei, Aroha atu aroha mai, Tatou i a conducted research on behalf of Waka Kotahi, NZ
tatou katoa, Hue e Taiki e. Transport Agency.
May peace be widespread, May the sea be like greenstone, Hopefully as many members as possible were able to
A pathway for us all this day, Let us show respect for each attend the in-person or online workshops. This discussion
other, For one another, Bind us all together. can only aid decision makers in striving to make an
Mornings are notably cooler (especially for those further even greater difference for those with conditions and
south). Like me, most with conditions will be feeling it and impairments on this very important issue. For some it
need to take extra care, and to keep warm. is about well-being and having the ability to socialise.
For others, its simply getting to the supermarket or the
The Covid-19 vaccination process is underway in
chemist. In line with UNCRPD principles, it’s all about
New Zealand and there are various places where you
inclusion, acceptance and being encouraged to be an
can do research to ensure you are well informed about
active member of your community.
all the pros and cons, enabling you to make an informed
decision. www.covid19.govt.nz/vaccines is a good place Ka Kite,
to start, or check with your GP. Some members may not be
able to be vaccinated due to their condition/s, however it is
important to remember that it is your decision to make.
Accessible transport within communities has been Mike Nolan
a hot topic around the country lately. The Disabled National Chairperson
MDANZ staff on the move
Muscular Dystrophy Northern has farewelled fieldworker members that will shine in my memory forever. I’ve really
Darian Smith, who joined MDANZ in 2010 in a part-time role. treasured my time here and our members and the staff
His wife, who had been diagnosed with myotonic have become like family”.
dystrophy the year before, showed him a Northern Branch Darian left MDANZ to pick up a part-time outreach role
newsletter advertising for a part-time fieldworker and said: and advance his writing career.
“You should do this!”. After two years he took on a full-time On behalf of MDANZ we would like to say a huge thank
fieldworker position. you to Darian for all the support and work he has given to
Darian says his time with MDANZ has been incredibly our members and staff. We wish him the very best with his
rewarding and there are “moments of gratitude from new adventure and his much-loved book writing.
2 | InTouch magazine Winter 2021
MDANZ
Useful updates for
MDANZ members news
AGM update 2021
MDANZ held its annual general meeting at the end of April, and we’d
like to introduce you to the national council’s newest members.
The 2021 MDANZ annual general successful café business for five years. 25 years. I have a lived experience of
meeting was held on April 30 via Zoom. I have Becker muscular dystrophy and neuromuscular disease having been
National Executive Chairperson have been a member of MDANZ for diagnosed with a muscular condition
Dr Tristram Ingham presented his more than 25 years. 10 years ago. In 2019, I transitioned to
report and told the meeting how the work as a member of the University
organisation remained sustainable Trevor Jenkin: of Auckland, Neurogenetics Research
throughout the disruption Covid-19 I am a long-time team. This has introduced me to a
caused, how staff, and members, member and range of neuromuscular conditions. I
adjusted to remote working, about supporter of have experienced the importance of the
diversifying the organisation’s revenue multidisciplinary team and the
MDANZ and also
and its contact centre. valuable role MDANZ has to play.
Chairperson of the
Tristram said MDANZ was Northern Branch of MDANZ. I am self-
empowering members through a employed and in my spare time I enjoy Joy Jenkin:
digital inclusion project, accessible organising and attending events for I joined MDANZ
transport and funding for research, MDANZ members. after my son
and he referenced the importance was diagnosed
Due to the resignation of Councillor-
of being, and staying, connected with Duchenne
at-Large Anna Davis and one
through peer support, the DPO muscular dystrophy
councillor’s term ending, nominations
Coalition, the Workbridge Council and have been secretary for the
were called for. Three nominations
and the Neurological Alliance. Northern Branch for 10 years. During
were received for the two vacancies,
Tristram did not stand for re-election my time on the Northern committee, I
and an election was held.
as National Executive Chairperson. have organised family camps, Mums’
Nominations were received for retreats, Christmas parties etc. I was
Mike Nolan (Canterbury Region)
Tony Antunovich (Northern Region), elected to the National Council in 2019.
was elected unopposed as National
Joy Jenkin (Northern Region - who I am passionate about the association
Chairperson and Trevor Jenkin
was standing for re-election) and and love meeting other members and
(Northern Region) was elected
unopposed as National Vice Joel Latimer (Central Region). offering my support. In all my decision
Chairperson. MDANZ’s returning office RSM making my first thought is always
Hayes Audit announced the result “how will the members feel about
of the election at the AGM and Tony this decision?”.
Mike Nolan:
I come from a and Joy were voted in as Councillors- Tony and Joy join existing councillors
background at-Large. Doris Hanham (Central Region), Scott
in tourism Boyle (Canterbury Region) and Yasmin
management Tony Antunovich: Dolbel-Neville (Northern Region).
and currently have I am a 61-year-old The branch representatives are
a general manager role with a focus on father of three. I Mike Schneider (Northern), Tristram
marketing, HR and event management. worked as a GP Ingham (Central), TBC (Canterbury),
My wife and I also owned and ran a in Auckland for and Mike Nolan (Southern). N
InTouch magazine Winter 2021 | 3
MDANZ
news
The benefits of gaming
For Scott Boyle, gaming started out as a way to preserve
his hand function. It’s turned into a 17-year hobby.
In 2004 the world was a very controller my fingers would be people he had a supportive and
different place. The internet was completely decorative. But that’s genuine community.
slower. Phones were just phones. And just one way it can benefit people “But Scott, don’t games make
gaming was generally viewed with disabilities. you violent?”
as something either just for kids The use of VR (Virtual Reality) No. Unfortunately this is a belief
or geeks. gaming can help with exercise and wrongly pushed by certain media
So, imagine my surprise when my maintaining a person’s range of outlets, specifically in the US, despite
paediatric neurologist suggested to movement and mobility, as well as the hundreds of studies done in the
my parents they get a games console being a pretty funny experience. past 20 years debunking it.
for me. As a 10-year-old all I heard In 2014 a study published by Of course, there are definitely
was that I was getting a Playstation 2, Davood G. Gozli in the journal of negative consequences for
but my parents heard more. Human Movement Science determined gaming, just as there are negative
With SMA2 my muscles gradually that people who play action-centric consequences for pretty much
get weaker. It’s a slower process than games are able to learn sensorimotor everything we don’t regulate in life.
some conditions but fast enough to skills more quickly, such as riding a
Some people can become addicted
be incredibly inconvenient. bike or learning to drive.
to it or spend all their money on
My doctor realised that one of the As we all know though it’s not just ‘microtransactions’.
most important things to preserve about the physical aspect, there’s also
But if you’ve gotten this far and are
was my hand function. After all, I the psychological to consider.
thinking about getting a console for
couldn’t walk anyway so let’s do Gaming, and the hundreds of your child, my advice would be to
everything to keep these fabulous online communities in it, has been build a routine and stick to it.
fingers moving! one industry where the fans are
It’ll hopefully help when
Since then I have been an avid willingly sharing their stories about
they’re a teenager and have more
gamer, and surprisingly one that’s trauma and depression, only to find
independence.
been supported by my parents. Every video games to be a positive outlet
Good luck! N
evening from 6pm-7pm during the and coping mechanism.
school week I would get into my Mats Steen, who was a prolific
standing frame and play a game like Norwegian gamer with Duchenne
Ratchet and Clank, and if it was the muscular dystrophy, was thought
weekend or the holidays, I would to have lived a lonely life when he
get an extra hour. passed away.
That regime lasted until I was 16 However, his family quickly realised
and stopped using a standing frame. how loved he was when thousands
But thanks to the routine I kept of fellow gamers all over the world
gaming in a more controlled manner. held vigil, with many attending his
So, did it help? funeral in person. Scott Boyle is a member of the
Yes! If not for the daily use of a Despite never meeting these MDANZ National Council.
4 | InTouch magazine Winter 2021
MDANZ
news
A cup of tea and a catch up
with ... Ross Paterson
Each issue we introduce a MDANZ team member.
How long have you worked for the It might also mean the opportunity
Muscular Dystrophy Association to contribute to supporting the wider
and what do you do? community through representation
on a district health board or in local
I have worked for MDANZ since
body politics; developing an artistic
November 2020 and I am the
or craft ability; becoming more aware
Fieldworker for the Canterbury
of one’s own culture, (if other than
area. My core tasks are to provide
NZ European), including learning the
education, support and advocacy
language of that culture.
for my members. I endeavour to meet some practical issues, e.g., helping
It could mean that anytime a
everyone in my area that would like members to obtain assistance
person wanted to get out in their
to meet with me, but other work is through government departments
community to participate or support
undertaken by telephone or email. and organising food parcels.
others, this would always be possible.
What qualifies as a great day If resources and funds weren’t
What are you passionate about?
at work for you? an issue, what would you like
to see our members enjoying? Growing food in an organic and
To be able to reflect on making some
sustainable manner, having different
sort of difference with the members The opportunity for all members to
culinary experiences, spending time
with whom I have contact. This might maximise their potential. I believe in
with family, friends and being out
be as small as having a catchup and the notion that everyone has a variety
in nature.
giving the member an opportunity of talents but without development
I’m an avid rugby and other
to assess me and decide whether these talents may lie dormant.
sports fan but would rather be doing
they trust me and would like to work This might mean undertaking
than sitting passively – except at
with me. further tertiary education to enhance
night. I often listen to sports events
Some of the other opportunities to work prospects, enjoyment of life and
while gardening.
work alongside the members include for members to better understand
My favourite happy place is being
providing some useful information; what they are capable of.
in the hills with friends and at times
supporting them at a meeting with It might mean connecting with by myself. I keep myself fit to make
school staff; advocating on their behalf a raft of community organisations these experiences enjoyable, and my
with health professionals; assisting where one can meet with other wife is able to join me on some of
with funding applications and like-minded people and enjoy their these undertakings. N
involvement with the wider MDANZ company while undertaking some
community. And encouraging their activity and developing skills, e.g.,
thoughts and suggestions about joining a NZ Men’s Shed or enjoying
developing this community. what New Zealand has to offer and
It also means assistance with improving one’s wellbeing.
InTouch magazine Winter 2021 | 5
MDANZ
news
Charitable giving without cheques
Banks are phasing out cheques this year, which is expected to heavily impact the charity
sector. MDANZ Fundraising and Partnerships Advisor Kristin Cross says there are plenty
of other ways donors can continue supporting people with muscular dystrophy.
More than $50 million was donated • Become a regular monthly
to New Zealand charities in 2020 supporter by completing a
via cheques. direct debit form or setting up
Therefore, the phasing out of an automatic payment. Call us
cheques by New Zealand banks has on 0800 800 337 or email
the potential to have a massive impact accounts@mda.org.nz.
on a charity’s ability to support their
communities and safeguard lives – Where can I find more help?
MDANZ is no exception. Stepping UP, a free community-
Fortunately, charities and banks based digital literacy programme
have developed a range of other that supports adults to build their
safe payment options so donors can digital skills, provides free online
continue to give to charities. banking workshops in 120 libraries
or community centres around the
Why the change?
Supporting MDANZ country.
The use of cheques had been
without a cheque book The workshops are available to
declining rapidly as people,
Forty percent of MDANZ’s gifts come anyone, regardless of who they bank
businesses and organisations choose
in by cheque, so we wanted to with. Go to www.steppingup.nz for
less expensive ways to pay.
share other ways our supporters can more information.
Ultimately the banks were
keep helping our members, so they Many banks have dedicated
faced with supporting a costly,
continue to receive the same support. support hubs on their websites
shrinking service that used outdated
• Make a one-off donation in person with information about alternative
technology. In addition, many
by visiting a bank. payment options and support on
customers preferred to use digital
• Give over the phone by calling us how to stay safe online. They also offer
payments, which can be faster, safer
on 0800 800 337 or by using your support over the phone or in person.
and cheaper than using cheques.
phone banking service. Our friendly MDANZ team is
Upcoming cheque-exit dates • Use the internet to make an online available to talk to you about your
• BNZ, Rabobank, TSB, SBS transfer or automatic payment giving options. Give us a call on
and HSBC – June 25 through the bank website. 0800 800 337.
• Westpac and The Co-operative • Make a secure donation through
Bank – June 30 the MDA website – go to www. Thank you for your support
• ASB – August 31 mda.org.nz and click the donate We appreciate your continued
It is important to be aware that while button. support over this transition period.
a specific bank might be allowing • When we send out our appeal Your gifts continue to make a
cheques for longer, people won’t be letter, send the donation form real difference to the lives of New
able to deposit a cheque from a bank back to us with your debit or credit Zealanders living with muscular
that has already gone cheque-free. card details or enclose cash. dystrophy. N
6 | InTouch magazine Winter 2021
MDANZ
news
Disability support issues are
not solely health issues
Alison Riseborough, who represents MDANZ on the Disabled People’s
Organisations Coalition, provides an update on the latest issues.
Last year the Health and Disability
System Review report recommended
that responsibility for Disability
Support Services (DSS) should
transfer from the Ministry of Health
to District Health Boards (DHBs).
There was strong feedback from
Disabled People’s Organisations against
this recommendation, which has now
been rejected by the Government.
In April, the Minister of Health, on the principles of Enabling Good aimed to recap and share disabled
Andrew Little announced major Lives and advice developed as part of people’s experiences of access to
changes to the structure of the the machinery of government review health services. This included some
health system. He said he had heard of DSS. initial findings on health access
the criticism that the Health and from the Health and Wellbeing
Minister for Disability Issues
Disability System Review did not Report being developed for the
DPO Coalition representatives met DPO Coalition by the Donald
adequately address the concerns and
with Minister Carmel Sepuloni in Beasley Institute.
needs of disabled people.
March. They discussed the need
“We understand the difficulties
for clarity on access to Covid-19 Accessibility Legislation
in having disability support issues
vaccines; the need for a clear The DPO Coalition is continuing
treated solely as health issues. They
implementation plan for Mental regular engagement with the
are not. Disability issues span the
Health (He Ara Oranga); and how Ministry of Social Development
full range of social issues that any
to engage directly with the Health policy team which is developing
community faces,” he said in a speech
Reforms Transition Unit. The options for Accessibility Legislation.
delivered on April 21. [See https://
Government has acknowledged Advice on the options will go to
www.beehive.govt.nz/speech/
that earlier engagement was poor Cabinet later this year. This work
building-new-zealand-health-service-
in both the Mental Health Review has the potential to set down
works-all-new-zealanders.]
and the Health and Disability requirements for what all parts of
The Government has commissioned System Review. New Zealand society, business and
further work on the future of DSS.
Government must do to deliver
The Ministry of Health and Ministry Health Reforms
accessibility for disabled people on
of Social Development will provide Transition Unit an equal basis with others. N
advice on the future of DSS later In May the DPO Coalition began
this year. You can contact Alison at
meeting with the Transition Unit
alison.riseborough@mda.nz
That advice will follow further work responsible for implementing the
with the disabled community based health reforms. The first workshop
InTouch magazine Winter 2021 | 7
Now, that’s a great idea!
Gadgets and products that members say make their lives better
We asked MDANZ members to tell In Touch readers about their favourite and most useful
gadgets – those products that make you wonder why you hadn’t heard about them earlier.
NAME: Peggy Lake
CONDITION: Facioscapulohumeral muscular dystrophy
PRODUCT: Ceiling Track Hoist - Maxi Sky 2
I wrote an In Touch article many moons ago, about my
journey of transitioning from walking to being a power
chair user. Anyone who read my story will recall that the
power chair, a much-dreaded piece of equipment, was in
fact life-changing.
Today I write to share my good luck, in discovering
another wonderful piece of equipment. A ceiling track
hoist. Why did no one tell me about these sooner?
I broke my ankle five years ago and after being in a
cast for 16 weeks, I lost the ability to do a standing transfer.
The lives of my husband Gary and I changed dramatically
because I suddenly required full hoisting, for all transfers, Gary Lake demonstrates the ceiling track hoist his wife Peggy uses.
forever. Gary Lake demonstrates the ceiling track hoist his wife Peggy uses.
8 | InTouch magazine Winter 2021Feature | Now, that’s a great idea!
My occupational therapist arranged delivery of an old- It pays to do your own research on what’s out there
style manual hoist. Although we had previously modified and to listen and learn from each other. Armed with
our ensuite to install a wet area shower, maneuvering a information about equipment you know will transform
manual hoist was still challenging. your life, go to your occupational therapist and ask for
We struggled for two years before we discovered their support in applying for funding. Good luck.
another option was available.
One last tip from Peggy
By chance my sister Andrea met someone who worked
for a client who had a Ceiling Track Hoist. Andrea told Let satin become your friend.
me about this exciting alternative, so I contacted my For a decade I’ve been using satin sheets and satin
occupational therapist and yes, I was eligible to apply for pyjamas to assist with movement in bed so when I
Enable funding. became a hoist user, it was obvious to me that I needed
My occupational therapist recommended a Maxi Sky 2 a satin sling.
from Arjo Huntleigh. This was duly approved. This makes it easier for my carers to get the sling in
place, easier to pull it out when finished and it is much
gentler on my skin. My occupational therapist thought this
was such a great idea (really! but it’s obvious isn’t it?) that
“A ceiling track hoist. she had my spare sling covered by the hospital seamstress.
Even though I use satin sheets and pyjamas I also have
Why did no one tell me an empty satin pillow slip under my hips when in bed. My
about these sooner?” carers pull this to rotate my hips slightly or when turning me.
Lastly, I sit on an empty satin pillow slip laid on top of
my power chair cushion. This enables me to make slight
adjustments to my position when seated.
I opted to make a $2000 contribution so that the hoist Satin has made a huge difference to my comfort and the
could be wall mounted, giving a full range of travel in any ease with which my carers can move me.
direction, rather than on the stands Enable would fund
I hope you become a satin convert, if you aren’t already.
which limits the range to left and right only.
The Maxi Sky 2 is installed, stored and operated so that
a single carer can transfer me without any manual lifting,
thereby helping to reduce the risk of injury to themselves “Let satin become your friend.”
or to me. Once I’m in the sling and hooked up, the carer
pushes the button to lift me up, then with the slightest
push by my carer, the Maxi Sky 2 glides me through the
room from bed, to commode, to power chair, etc.
All my carers and family absolutely love the ease of use.
Most pleasing of all for me, is that my carers stand to the
side rather than directly in front of me and getting an
unflattering view whilst I’m hanging in mid-air!
Using the Maxi Sky 2 is a far more dignified experience
for individuals requiring hoisting. In my opinion, this
benefit alone warrants the investment.
Go to https://www.arjo.com/int/products/patient-
handling/ceiling-lift/maxi-sky-2/ to find information Satin has made a huge difference to Peggy’s comfort in bed and in her
about this product. power chair.
InTouch magazine Winter 2021 | 9Feature | Now, that’s a great idea!
NAME: Heather Anderson
CONDITION: Charcot Marie Tooth disease
PRODUCT: Billy shoes
These shoes have a zipper that goes along the outside of
the shoe and around the toe, allowing the upper of each
shoe to open and fold over completely. The foot can be
placed on the footbed unobstructed. Then with a tug on
the zipper-pull the shoe closes and secures over top of the Billy shoes are easy to put on and take off.
foot. Unzip, flip, zip, and go, so easy. Billy shoes have a big
I now wear a kid’s size 5 wide shoe and these shoes
range of sizes and styles, from toddler to adult and they
fit properly.
are reasonably priced.
[One place where] Billy shoes can be found is Adaptive
I have funny feet that are hard to fit. Feet that are wide,
AF Footwear. It is a small family run business. They are
with pulled up arches, and bent toes. The shoes that I used
happy to arrange a fitting for those that live in or around
to wear, they were longer than they needed to be, to fit
Auckland. Customer service is fantastic.
my funny feet.
Also, as I wear ankle-foot orthosis (a brace or splint),
getting one’s foot into a shoe can be an interesting mission
and tiring to say the least. I have muscle waste in my fingers,
so laces can be quite fiddly and hard to do up. Whereas
these Billy Shoes are so easy to put on and take off.
Emma from Adaptive AF Footwear said she has never
found a foot that she hasn’t been able to fit. I said: “You NAME: Mitchell Fels
haven’t seen my feet.” CONDITION: Duchenne muscular dystrophy
NEED: Keeping warm in winter
Hi, my name is Jan Fels and I live with my husband Paul and
son Mitchell, aged 27, who has Duchenne muscular dystrophy.
Keeping Mitch warm is a number one priority in our
household, and we have found some amazing accessories
that assist Mitch with this.
The first item is a heated throw blanket. Mitch has had a
few of these which are really good for keeping him warm
when he is at his computer. He also has a fan heater that
he uses too.
The second accessory that Mitch has is heated slippers.
We got onto these a few years ago after a friend told us
about them.
They are a bit expensive but for the price they have been
Heather Anderson. a godsend for Mitch and his cold feet.
10 | InTouch magazine Winter 2021Feature | Now, that’s a great idea!
They have rechargeable
“This has been a batteries that sit in a pocket
on the ankle and have three
totally amazing piece of heat settings. The soles
equipment that has kept of the boots are heated
by these.
Mitch driving through the They last for a few hours
Heated slippers have been a godsend
coldest temperatures...” on the low setting but of for Mitchell Fels.
course would run out
quickly on the high setting. Good value though!
The third accessory that we have is the Under The
Weather chairpod. I found these last year and we decided
that Mitch would benefit from one of these for when we are
out and about during the cold months. Cost was okay and
not too expensive. www.utwpods.com/products/chairpod
Lastly, we have the hand warmer that attaches to the
driving console of the wheelchair. This has been a totally
amazing piece of equipment that has kept Mitch driving
through the coldest temperatures, even the extreme cold
of being in New York in April. A brilliant invention! [These
were found at] www.mo-vis.com/en/products/mo-vis-
products/hand-warmer
NAME: Densie Ganley
CONDITION: Limb Girdle muscular dystrophy
PRODUCT: Powerfit Powerlegs
Powerfit Powerlegs is a vibration and acupressure system
which helps improve circulation without exercise.
When a person sits for long periods, the body has to work
harder to bring the blood back up to the heart from the legs
and feet. As a result, blood pools in the lower extremities. This
pressure causes the veins to expand and seep out water into
the surrounding tissues. Oedema (or Edema) is the abnormal
accumulation of fluid in certain tissues within the body.
The accumulation of fluid may be under the skin –
usually in dependent areas such as the legs, feet or arms
Above: A chairpod fits over Mitchell Fel’s wheelchair. A heated blanket
keeps him cozy. A hand warmer keeps Mitchell’s hand toasty when he is
and is common for people who are sitting in wheelchairs
driving his wheelchair. for long periods of time.
InTouch magazine Winter 2021 | 11Feature | Now, that’s a great idea!
NAME: Lynda House
CONDITION: Cerebellar ataxia
PRODUCT: Decorated walking sticks
I am a newbie to MDANZ, although I have had cerebellar
ataxia for 50-odd years.
I have been asked to tell you about my walking aids –
they are cool looking walking sticks.
One is pink with a super New Zealand looking pattern
all over it (lolly pink with bluish and grey black patterns).
It has a very comfy hand cradle in pink and the foot tip
is also matching rubber. I found this one by Googling
“walking aids in NZ”.
The other is metallic purple with a claw base (very
Denise Ganley uses the Powerfit Powerlegs to keep oedema under control.
pretty). It is a HurryCane and stands on its own but
only if the floor is level. My daughter gave it to me with
cellphone charms attached to the elastic piece that wraps
around the stick before the hand loop.
“I use [it] for around 20 minutes Over the years they have gone but I replaced them with
each day, usually in the evenings earrings - a much cheaper option and they too can look
good depending on the occasion.
before going to bed… It’s easy
to use and I can do it from
the wheelchair.”
I was admitted to hospital because of this and was
diagnosed with Chronic Venous Insufficiency. This is when
the venous wall and/or valves in the leg veins are not
working effectively, making it difficult for blood to return
to the heart from the legs. CVI causes blood to “pool” or
collect in these veins, and this pooling is called stasis.
I use Powerfit Powerlegs for around 20 minutes each
day, usually in the evenings before going to bed, and have
found that it keeps the oedema under control much more
effectively. The vibrations help move the fluid around and
then they drain better overnight.
It’s easy to use and I can do it from the wheelchair. Lynda House shows off her pink walking stick and matching hair.
12 | InTouch magazine Winter 2021Feature | Now, that’s a great idea!
“These sticks have aided
me sporadically in the past,
but my walking has
worsened, and I now need
a stick all the time as The gift of a tip
my balance is not good.” Many thanks to these members who have shared
their useful gadgets with In Touch. If you have
an item you’d like to tell others about, please
let us know. We’re also interested to hear from
These sticks have aided me sporadically in the past, manufacturers or retailers who have a product
but my walking has worsened, and I now need a stick
they think may be useful to our members.
all the time as my balance is not good.
As a female I coordinate with the colours in my hair Email: info@mda.org.nz and use
that my grandchildren colour frequently. ‘In Touch product tip’ in the subject line.
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for your free demonstration. paul@freedom-chair.nzPathway to home
Trepidation turns to
freedom and equal opportunities
Something as simple as a concrete path has helped ensure Daniel Bertinshaw
can still be part of treasured family gatherings. By Melanie Louden.
For Daniel Bertinshaw and his four siblings, the family
home in Dunedin is the “nexus of the family”.
“The house is a family treasure really. The whole family
just loves this house,” Daniel tells In Touch.
However, access to the house was difficult and dangerous
for Daniel who uses a wheelchair so he sought help from
the Bradley Jenkin Memorial Fund to address the situation.
Daniel, 41, has facioscapulohumeral muscular
dystrophy and had been living in Auckland with his
wife Camille Cowley.
But their struggle to find an accessible house, and a fall
while navigating stairs at home, which resulted in a head
injury for Daniel, prompted a shift back to Dunedin where
their families live.
Daniel moved first in May 2019 and lived in the family
home with his mum, Donna, and sister, Veronica, while the
couple searched for a suitable rental.
The problem was the path from the road to his mother’s
115-year-old house was an old brick path, with steps and
no handrail. Donna is delighted that a new path means her son Daniel Bertinshaw
can drop into the family home unannounced. Photo: Jackie Stewart.
Over the years tree roots had lifted the bricks and made
the path dangerously uneven. With age the bricks became However, when the time came for Daniel to move out,
harder to clean, making them slippery in the wet. returning to the family home where the close-knit family
While Daniel was living with his mother he couldn’t get often gathers would have been difficult.
out of the house without someone helping him, or at all if “I knew I wasn’t going to be living at mum’s forever, but
it was wet. I needed to make it accessible so that I could go over easily
“Someone would have to hold on gingerly as they helped once I’d moved out.”
me down the steps. Mum would have kittens every time I Daniel, a member of MDANZ Southern Regions, and
used that path.” Veronica agreed to cover the cost of putting a concrete
If Daniel was in his hand chair, someone would have to path from the footpath to the front door of the house and
dismantle the chair, load it in the car, then assist him down Daniel applied to the Bradley Jenkin Memorial Fund which
to the car. granted him $604.50 towards his contribution to the path.
14 | InTouch magazine Winter 2021Feature | Pathway to home
“One sunny day there was
a knock on the front door
“It’s nice to be able to overcome and I opened it to Daniel.
some of the limitations.” He and his powered chair
had easily made the trip up
the hill from his place to
ours. I couldn’t get over it.
Daniel and Camille eventually found a suitable rental
“That Daniel could
property and in May 2020, just after the first lockdown,
appear at my door when he
Camille joined her husband in Dunedin and they moved
wanted to was the greatest
into their home the following month.
sign that the years of
Seven weeks later the path at Donna’s house was hardship were fading away
A new path means Daniel Bertinshaw
completed and Daniel had a new-found freedom. for Daniel and Camille.” has the freedom to come and go from
his mother’s house without assistance.
Leighton Griffiths from Griffiths Construction laid the path, Donna says the family Photo: Jackie Stewart.
and both Daniel and Donna are grateful for his efforts. home, built in 1906 as the
“He was really good at listening to the specific needs I manse for the local Baptist Church, is a treasure.
have and delivered without any hassle.” “We have special times when we get together.”
Daniel can now ride his power chair the five minutes from Donna says it means “everything, and not just to me,”
his new home to Donna’s house and the best part is he can that Daniel can still be part of family gatherings thanks
turn up unannounced. to a simple path.
“That was a bit of a surprise for mum!” “The Sibs (as they call themselves) love being together.
Initially, Daniel didn’t realise the impact the ramp It’s wonderful that Daniel can motor up the hill when
would have. there’s a gathering.
“But then I realised it was a relief to mum and to my wife. “One day I’d like to have a path made through the
Before there was huge trepidation about me using the hedge to the back yard so Daniel can enjoy outside times
old path.” with everybody.”
The path puts Daniel on an “equal ability” to his siblings. Camille and Daniel are now living in an accessible rental
“I’m just the same as my siblings – I can turn up to mum’s property while they prepare to build an accessible home on
any time. We’ve all got a key for the door.” land they have owned for a number of years.
Daniel is very grateful to the Bradley Jenkin Memorial
Fund for contributing to the path and recognising the
benefit the path would have to him and his entire family.
The Bradley Jenkin Memorial Fund
“It’s nice to be able to overcome some of the limitations.” The Bradley Jenkin Memorial Fund helps MDANZ
Donna says watching her son use the old pathway “filled members with a neuromuscular condition receive
me with dread”. funding for access opportunities and specialised
resources that enable them to achieve freedom.
“Even when it was dry, it was a difficult mission, requiring
serious concentration, to help Daniel get safely down the The fund has helped members purchase specialised
path to the steps, then down the steps to the footpath, and sports equipment, participate in sporting events, it has
lastly safely into the car. contributed towards the cost of obtaining a mobility
dog, provided mobility equipment, and assisted with
“Because of accessibility issues, Daniel spent a long time
career development such as university and course fees.
in a lockdown of a different order.”
For more information go to https://www.mda.org.nz/
Donna remembers well the first time Daniel arrived
What-We-Offer/Bradley-Jenkin-Memorial-Fund
unannounced.
InTouch magazine Winter 2021 | 15All aboard
Exploring the North Island on
board the Northern Explorer
MDANZ member Tegan Morris says the train journey from Hamilton
to Wellington provides a unique perspective of our countryside and towns.
The Northern Explorer rail trip starts in Auckland and runs
down through the central North Island, with its end point
in Wellington.
My friends and I boarded the train in Hamilton, which
is the second stop on its journey south.
Due to using a power chair and generally having other
equipment to travel with, I have previously taken my
van or, for shorter trips, I have flown from the Hamilton
Domestic Airport.
But for this trip I wanted the opportunity to experience
Above left to right: Tegan says the Northern Explorer was a great
more of my country’s beautiful landscape, which is not opportunity to see more of New Zealand. The views are spectacular
able to be fully appreciated when we are zipping by in during the 10.5 hour journey. Tegan took the opportunity to visit
some sights in Wellington.
a vehicle or overhead in a plane.
When we were given our tickets and escorted on board might have been during busier travel seasons.
the train, we were directed to the dining carriage, which
The windows alongside the train carriages are large
is where the wheelchair spaces and accessible bathroom
and offer amazing viewing opportunities, so you can take
are located.
in the diverse landscape as the journey continues down
In order to board the train, I was loaded onto the the country.
wheelchair hoist, which is in the same area of the train. The
Starting with the green farmland in the Waikato we then
lift is the same type of mechanism you would find in some
travel into the more forested and then tussock/tundra
mobility vehicles.
landscape of the Central Plateau.
The dining area allows enough space for a person in a
After this it once again opens out into a variety of
wheelchair to park in front of a table with a chair or chairs
farmland and then coastal views as you near Wellington.
on the opposite side, with a similar arrangement on both
sides of the carriage. Some of the scenery is familiar if you have driven down
the main highway but you get more of a spectacular
This means that passengers can decide which side they
view as the train brings you closer to rugged hillsides
position themselves to enjoy the view and can face the
and expanses of bush. Where it passes through the more
opposite direction for the return journey if they choose.
remote hilly landscapes, river valleys and coastline there
On our trip, I was the only person in a wheelchair and are unique views which you have more time to appreciate
with the Covid restrictions, there were less people on and photograph from the windows or the outdoor
board, so we had more space available than perhaps there viewing carriage.
16 | InTouch magazine Winter 2021Feature | All aboard
Unfortunately, the outdoor carriage and other parts stops where passengers can join or depart from the train.
of the train were not accessible in my chair, but if people
The journey provided a unique view of the small
are more mobile or perhaps with smaller chairs, they may
communities and towns we passed through and the
be able to get to the outdoor area.
added height advantage and the placement of the rail
Even though I wasn’t able to go outside on the tracks meant we saw parts of the townships that most
viewing carriage I don’t feel like I missed out at all as visitors wouldn’t see. As a history nerd, a highlight for
the highlight views like the Raurimu Spiral, Turangarere me was being able to appreciate the older buildings and
Horseshoe and Makatote Viaduct were just as stunning homes in the more remote places and the historic aspects
from inside the train. These sites would also likely interest, of the train stations.
not only those with an interest in trains, but also in
We found the staff were all helpful and pleasant and we
engineering, due to the complexity and scale of the
were able to enjoy the views and the relaxing experience
structures needed to achieve the functional track.
of the journey without having to worry about traffic or rest
In our location in the dining cart, we were able to enjoy stops along the way.
food available in the onboard café, as well as our own snacks.
The Northern Explorer leaves Auckland at 7.45am and
The bathroom was very conveniently located in the arrives in Wellington at 6.25pm. For more information go
entrance to the same carriage. to https://bit.ly/3dPMB9I.
The route has several stops along the way. Most are Tegan Morris has congenital myopathy and is a member
brief, for the train to change drivers, but there are several of Muscular Dystrophy Northern.
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2019Alisha Mill hopes boccia will lead her to the
international stage and the Paralympics.
Photo: www.jjohnstone.photography
Rolling through 2021
Alisha is living her best life on and off the boccia court
FSHD isn’t slowing Alisha Mill down. After a successful 2020 year playing boccia
she has high hopes for what this year will hold. By Melanie Louden.
Alisha Mill is a typical teenager. in the individual competition and she was awarded the
She loves to sketch, especially architectural drawings; Boccia NZ Junior Player of the Year award.
she likes to cook meals for her family; she’s a keen She was also the first para-athlete to win the Bernie
photographer and she doesn’t shy away from adventure. Walker Award from the Canterbury Sports Foundation,
The 17-year-old lives with her mum, Melissa, dad, Matt, and at the 2020 Parafed awards dinner she became the
and her older sister Skyla in Christchurch. They have a first boccia player to receive the Parafed Junior Sports
“farmyard” of family pets. She loves singer Lewis Capaldi Person of the Year title.
and Kiwi bands L.A.B and Six60. Alisha was diagnosed with facioscapulohumeral
She is also one of New Zealand’s top boccia players and dystrophy (FSHD) at the age of seven. But the diagnosis
has held the number one ranking for her classification for came after many hospital and specialist visits with no real
the last two years. results and a misdiagnosis of moebius syndrome.
Boccia is similar to petanque and bowls – players try and The correct diagnosis came about after Alisha’s mum
get their ball as close as possible to the jack. It’s played Melissa saw an episode of The Ophra Winfrey Show
sitting down and is an inclusive sport for young and old featuring a girl that couldn’t smile.
and people with varying abilities. “Everything this girl had was similar to me. After my
Last year at the national competition Alisha came away mum spent many hours on the internet researching,
with a bronze medal in the teams’ event, her first gold she showed my specialist and they looked it up and said
18 | InTouch magazine Winter 2021Feature | Rolling through 2021
from Boccia New Zealand and ParaFed Canterbury, as well
as the Muscular Dystrophy Association of New Zealand’s
“I do not let it get in the way Bradley Jenkin Memorial Fund.
of me living my best life.” “The money I received from the fund went towards new
boccia balls. The funding has also helped me to hire courts
for private trainings.”
Her new balls arrived two weeks before the 2020
‘you’ve hit the nail on the head’.”
National Boccia Championships.
FSHD typically affects the face, shoulder blades and
“This didn’t allow me to have much time to train with
upper arms. But in Alisha’s case it “affects my body all over
them and get used to how they roll. But this did not stop
from head to toe”.
me from getting good outcomes.
“Medically, there is no cure, which can be hard. But it does
“I’d like to thank the Bradley Jenkin Memorial Fund for
not stop me, and it does not mean that there will never be
its support to help me reach my 2020 boccia goals. I can’t
one.” Alisha is currently part of a drug trial in Australia, which
wait to see what 2021 has on offer for me.”
she will be finishing in New Zealand due to Covid-19.
“I do not let it get in the way of me living my best life.
Some things may take me longer to do than an ‘abled’
person – I may have to do it differently.
“Yes, I have a disability, but I do not let this stop me
breaking boundaries.”
She’s done everything from adaptive white water rafting
to camping, skydiving and ziplining.
Her boccia career began about five years ago after she
went to an open day put on by Parafed Canterbury.
“I was playing this guy from the club and I won and they
were like ‘woah she’s really good!’ They invited me to a club
training, and I’ve never left.”
Alisha trains four times a week – three private trainings
and one with the club, and says she likes competing in a
sport where everyone is on an equal playing field.
“Boccia means a lot to me. It has opened a world of
opportunities. Boccia allows me to exercise both physically
and mentally – it’s all about thinking strategically.
“My goals are to get on the international stage and one
day play at the Paralympics.”
She says balancing school and boccia can be quite
challenging, but she’s grateful for the “full support” she has
from her school and her boccia club.
2021 is a busy year of competitions.
In April she competed in the Halberg Games,
followed by the North Island, South Island and National
championships. There’s also the Secondary Schools Boccia
Tournament and her club tournaments. Top: Alisha Mill pictured with her sister Skyla and dog Chico.
Alisha says support for her love of boccia has come Above: Alisha enjoys cooking for her family.
InTouch magazine Winter 2021 | 19TECH
report
Information pathways and Covid-19
Wellington SeniorNet facilitator Alan Royal writes about
the benefits of creating mind maps to share online information.
The Covid-19 lockdown revealed Make a face mask
many ‘hidden’ technology-related
Bored During Self-Isolation?
KEEP CALM AND
Exercise safely at home
CARRY ON
issues. Lack of confidence in handling (AT 2 METRES)! Arts & Letters Daily
NZSO live
apparently simple technology issues, Skinny
Broadband deal Home exercise options
Stuck at Home?
as well as a lack of awareness of how Eat Well for Less WCC Stay at Home Fest
267 eateries online Stuff documentaries
to go about seeking information Covid big document dump
Love Food Hate Waste Free ebooks
BobJones (Sir)
on solving technology issues, were
Wine2u Leisure/Learning WCC passing the time
Microwave sterilising Use free time
No bug ginger beer
Covid-19 News on Press Reader
prominent.
WCC eLibrary
AGE Concern
Covid 19 scams
NewWorld Food 3000+ Ted talks
Current cases No yeast bread NZ Centre for Political Research
Also prominent was a confidence Singapore resources
Microwave meal in a mug
The Spinoff
Countdown
You Tube
and awareness situation related to MOH website Information COVID NewsHub Active 10 walking app
NZ Govt website PLAN
Covid-19 information. Living in a Neighbourly Support
Exercise plans Otago Classic app
Wellbeing tips Physical
retirement village made me more
Older adults
Covid home plan
Prevent boredom Mental Handwashing Steady As You Go - You Tube
The Lockdown
aware of these problems. During Beehive press releases
Mentemia
Melon
Support apps Contribute
Otago falls manual
Just a thought
lockdowns I was unable to visit
Google Covid19 website Coronavirus research
Level 3 for Seniors
residents, but I was able to address
Self isolation
Social
solutions either by email or phone. Alan Royal’s Covid Plan mind map is a useful and easy way to share information. For a larger map,
visit www.bit.ly/covidplannz.
I could visit and work on a
computer, phone, tablet or TV in the way to present, in a diagram, a mass of provided an opportunity to school
absence of the person. This meant information, in this case web links, on a many people on how to use search
they would give me sole access to single page. While I was working with engines such as Google to explore not
their villa or apartment. older people, the result of the exercise only technology related issues, but,
is relevant to the impaired population. for example, extending the health and
Retirement village residents (50
The mind map is available at exercise tools noted in the mind map.
percent of the 65+ age group have
www.bit.ly/covidplannz. I have used the word impairment
one or more impairments) represent
a cross section of all impairments – Another feature is that it is a dynamic in these notes rather than the word
sight, hearing, mobility, cognitive and tool that can be added to and updated disability. In many situations an
learning difficulties. In my experience, in real time, so the information is impairment only becomes a disability
the latter two are the major source always up to date. Feedback on this if technology, information (web
of impairments. This provides a good approach has been positive. Users and print), services, infrastructure,
base in understanding how to get have found the simplicity of the environment or community cannot
information across to the impaired approach has given them confidence resolve an impairment – then it
community. to explore further and made them becomes a disability.
Living with Covid-19 introduced more aware of what information is In the case described above
many other needs related to health useful, relevant and available during information and technology have
and wellbeing. To meet these needs, stressful lockdown situations. combined to make help accessible.
in a simple manner, for older people in As noted, confidence and awareness Alan Royal is a member of Wellington City
general, I developed a process using were two major hurdles to get over Council’s Accessibility Advisory Group and
a mind map. A mind map is a useful during lockdowns. The lockdowns also a facilitator with Wellington SeniorNet. R
20 | InTouch magazine Winter 2021TECH
report
Technology: Creating accessible solutions
Assistive technology opens up a world of opportunities for people with disabilities or
physical limitations, writes Adaptive Technology Solutions founder Genevieve McLachlan.
What would you do if you couldn’t
Types of assistive technology
read your computer or smartphone?
For many people living with access Here are a few examples of the more
needs, that is their reality. common assistive technologies and
their uses.
Picking up your phone to check
your notifications, scrolling through Dragon Speech Recognition
social media and messaging your Software: Turns your voice into text
friends is something you wouldn’t as you dictate. It can help people
normally think about. But that simple with learning issues, like dyslexia who
act of staying in touch with the world struggle to express themselves in
Genevieve McLachlan wears headphones
digitally becomes a lot harder if you while using a computer with magnification. writing. People who are unable to use
have difficulty with your sight or your their hands due to an access need.
motor skills. ZoomText or SuperNova
by allowing them to participate
So, what can you do if you (or one Magnification Software: Magnifies
of your loved ones) are faced with in training and employment
the entire computer screen. It can help
this problem? Two stress-saving opportunities, therefore increasing
people with low vision who struggle
words… assistive technology. independence and increasing their
to read their computer screen.
contribution to society.
Assistive technology is any item, JAWS or Dolphin Screen Reading
piece of equipment, product or Something as simple as the built-
Software: Reads the entire computer
software program that provides in magnification feature available
screen by voice. It can help people
someone with disabilities or through technology giants like Apple
who are blind, use screen reading
physical limitations the ability to live and Microsoft may reduce the need
software to use their computer.
independently, maintain functions or for expensive additional software.
improve motor functions. That can be Not only have they decreased Apple, Microsoft and Android are
anything from magnification software the cost of assistive technology, incorporating this type of technology
or speech dictation, right through but these features make it more into their Operating Systems;
to specialist hardware that allows accessible for everyone. People with however it is not usually enough
people to use technology their way. access needs are often limited by for someone with significant access
Assistive technology is perfect for restricted opportunities and not by needs, therefore an assessment can
individuals who struggle to use their their actual disability. be necessary to determine the best
computer, read print, or who may possible solution for each individual.
The great news is that people who
prefer dictating rather than typing. are working or studying and need Adaptive Technology Solutions
Access to technology is important specialised assistive technology provides guidance and training in
for everyone to create a truly inclusive because of their disability may be making technology accessible.
society where there are no barriers eligible for Government funding. Genevieve uses assistive technology
to inclusion. This funding covers the costs of daily to run her business, having lived
Technology has opened the specialised assistive technology that her whole life with access needs.
world for people with access needs, is specific to their disability. www.adaptivetech.co.nz. R
InTouch magazine Winter 2021 | 21You can also read
