MSWA2016302 Network Magazine Spring 16 v4

network
The Official Magazine of the MS Society of SA & NT | ms.asn.au
Read about Anna and Josie’s amazing skydive.
Spring 2016
Skydive for MS
Dietary information
Peer Support
Self-Compassion: Our greatest ally

Inside | Spring 2016
Letter from the Editor
Libby Cassidy
The Multiple Sclerosis
Society of SA & NT (Inc.)
Telephone (08) 7002 6500
Fax (08) 8164 1599
MS Assist Freecall 1800 812 311
msassist@ms.asn.au
Client Services
Directory
GENERAL MANAGER – CLIENT SERVICES
Sue Shapland (08) 9365 4840
HEAD OFFICE
341 North East Road
Hillcrest (08) 7002 6500
MULTIPLE SOLUTIONS
BRIGHTON
7a Sturt Road (08) 8198 1400
CHRISTIES BEACH
Unit J/111 Beach Road (08) 8392 0100
ENFIELD
273 Main North Road (08) 8360 0800
MODBURY
31 Smart Road (08) 8203 6600
MORPHETT VALE
Shop 3/204
Main South Road (08) 8187 2100
SALISBURY
6-8 John Street (08) 8256 3700
TORRENSVILLE
130 Henley Beach Road (08) 8164 1550
WOODVILLE
51 Woodville Road (08) 8345 8700
Please direct all enquiries to
MS Assist on 1800 812 311
or email msassist@ms.asn.au
Contact Us
If you would like to comment
on anything you read in this
Network please email
feedback@ms.asn.au
or write to
MS SA & NT, PO Box 377,
Salisbury South DC SA 5106
The Network can also be viewed at
ms.asn.au
The Editor welcomes unsolicited submissions.
All articles are subject to a reviewing process.
The views expressed are those of the Authors
and do not necessarily reflect the view of the
Society’s staff, advisors, Directors or officers.
Letter from the Editor 3
From the desk of the CEO 4
A message from the General Manager – Client Services 5
Meet our CEO in waiting – Helen McLean 6
Dr Google – To believe or not to believe? 7
Round-up of research and other items of interest 8-9
The National Disability Insurance Scheme (NDIS) 10-11
MSchievous Bunch Cooling Vest Grants 11
Overview on type 2 diabetes 12-13
Five tips for getting a mental health boost for people with MS 14
Purchasing equipment? We recommend you speak to an OT first! 15
Accessible vehicle for trade 15
Workplace Solutions 16
Share your MS experience in an eBook 16
Dietary information 17
Peer Support 18-19
Information Sessions 2016 20-21
Self-Compassion: Our greatest ally 22-23
That’s life with Narelle 24
Anywhere with Colin 25
Skydive for MS 26
Running the Barossa Marathon 27
Do you know what services are offered by your local council? 27
NURSING
Our nursing team is usually the first point of contact, after the neurologist, for anyone
diagnosed with multiple sclerosis. We’re committed to providing holistic support so you have
a greater understanding of what to expect from your condition.
OCCUPATIONAL THERAPY
Occupational therapists work with Clients referred through the Disability and Community
Services Program, providing assessments and recommendations for aids and equipment.
SOCIAL WELFARE
Our welfare officer is here to provide information about entitlements,
how to access community services, advocacy and other essential supports.
PEER SUPPORT
Peer support groups help people living with multiple sclerosis provide support for each
other and share their experiences. There are several groups meeting across the state.
They provide a safe place for the sharing of information and helping each other.
Welcome to the Spring 2016 edition of Network!
It feels like spring is desperately trying to break through
what has been a long winter. Whilst I love all seasons and
am grateful for the changes they bring, I definitely favour the
sunshine and being outdoors. I am loving my morning walks
with the sun rising, and whilst it’s still very cold at 6.30am,
it is definitely getting a lot lighter!
There are so many positive MSSANT stories to report this
quarter, and each story you will read within these pages tells
of growth, strength and great results. It is inspiring to see
how far the Society has come and what its future holds.
We are now well and truly settled into our new Head Office
premises in Hillcrest. This fantastic location is quite a
beacon from the street with its striking red pillars, and
already we have received great feedback about our presence
on North East Road. It is great to have more staff housed
together in one location. We are most pleased though, that
these larger premises will allow us to grow the services
and support we can provide to our Clients, making it more
of a true ‘Client Hub’. We are planning the introduction of
physiotherapy and group programs, will host education
sessions, and offer a ‘drop in’ space for Clients who just
need to pay us a visit from time to time. Stay tuned for
how these plans roll out. We really look forward to
welcoming you!
I’m also looking forward to you meeting our new MSSANT
‘CEO in waiting’ Helen McLean, who will officially start her
duties in the coming months. Look out for a ‘hello’ from
Helen in this edition, and much more in the future.
The rest of this edition is packed full of great information,
tools and stories for people living with MS. There is a great
article on diet with some information from MS Australia
which I hope you find useful. There is also a great update
on the roll out of the National Disability Insurance Scheme
in both SA & NT. It provides all the details of how the roll
out will be happening in your area, and some stories from
people who have been through the process already.
As usual we have a great range of Information Sessions to
have a look at, and events to support!
If you have any ideas for sessions or need more
information, please call MS Assist on 1800 812 311
or email us at feedback@ms.asn.au
As always, I invite you to send your feedback or your
story ideas to feedback@ms.asn.au; I would love to
hear from you. Enjoy the nicer weather, and I look
forward to bringing you our next edition of Network.
Do you want to receive the Network
online? Want monthly information
updates?
Register your email address today to start receiving our
monthly e-newsletter and the Network magazine online.
Just email feedback@ms.asn.au or call 08 7002 6500 and let
us know your current email address.
2 Spring 2016 The MS Society of South Australia & Northern Territory The MS Society of South Australia & Northern Territory Spring 2016 3

From the desk of the CEO
Marcus Stafford
A message from the General Manager
– Client Services – Sue Shapland
In an Olympic year, it is very fitting that the MS Society of
South Australia and the Northern Territory (MSSANT) finish
in a record breaking position of strength.
Through what has been a true team effort, we have
recorded a positive performance across all areas of the
business, and the Society sees itself firmly on very solid
ground with an exciting future ahead.
Some of the highlights include:
• The posting of the highest gross revenue and net profit/
surplus in the Society’s history.
• A return to contributing financially to both MS Australia
and to MS Research Australia.
• The repayment of a substantial portion of the Society’s
debt. Our outstanding loan balance now stands at
$433,333 – down from $1,150,000 just two years ago.
• 30% growth in Client services for the year. Real things
to real people. Allied healthcare services that make a
significant difference in the lives of people with MS.
• In line with strategy, the growth of our footprint including
the new Client services hub at Hillcrest.
We are now in fantastic shape to welcome the full roll out
of the National Disability Insurance Scheme (NDIS).
It was recently announced that this will occur progressively,
across the State, over the next two years with adults able
to register for the Scheme and assess their eligibility,
from 1 July 2017.
To extend the imagery of our Olympic year, victories are
always sweet. But ‘come from behind’ victories are perhaps
the sweetest of them all.
As many will recall, life for the Society was perilously
difficult three years ago and so our turnaround in recent
years is a proud moment in our history.
Our healthy position allows the Society to return to local
management and I am sure the Board, Management and
staff are all excited and eager to work with Helen McLean
as the new Chief Executive Officer of the Society.
Helen will officially commence her full duties shortly, and
is already on board working closely with me through the
transition process.
This will, therefore, be the last time I have the privilege of
writing a Network article as your CEO. As I fade into the
Western Australian sunset, I look back with satisfaction on a
challenging, but ultimately rewarding journey for our Society.
Although, as CEO, I am delighted to take the bouquets that
go with the outstanding results that have been delivered,
(just as I would have taken the brick bats!), it has been
a true team effort. This result has only been achieved
with a courageous and supportive Board, a truly brilliant
management team, both in Western Australia and South
Australia and a dedicated workforce of over 100 staff
working tirelessly for the ultimate benefit of people with MS.
The foundations are in place and the Society is poised to go
from strength to strength. So, I will watch the progress of
the Society with more than just a little interest. I will enjoy
the positive developments for people with MS, knowing that
once upon a time, I played a small part in leading a team
that helped to lay the foundations of success.
My sincere best wishes and unswerving confidence for
the Society’s successful future.
“We should always have three friends in our lives - one who walks ahead who
we look up to and follow; one who walks beside us, who is with us every step of our journey;
and then, one who we reach back for and bring along after we’ve cleared the way.”
Michelle Obama
There is so much going on at the moment both here and
overseas it’s hard not to get caught up in the hype and feel
that at times we live in a slightly crazy world; but also a
pretty lucky country.
I know you should never talk politics but the possibility of
Donald Trump being the next President of the USA is a bit
of a challenge for me! The ongoing random acts of terror
make us both concerned but also grateful that for the
most part we live in a country buffered from much of this
unpleasantness. Watching the news isn’t always enjoyable
although the Olympics provided some much needed respite.
I think we can often focus on the negatives and then fail to
appreciate what we can be grateful for, both now and into
the future. We are really lucky we have subsidised access
to all of the MS therapies; many countries including the UK
don’t. This provides greater choice and the opportunity to
switch therapies if things aren’t going as planned.
Our health system has its faults and issues but overall it’s pretty
good and the standard is high and access relatively easy.
The NDIS is another reason to be glad we are living in
Australia. When this Scheme reaches full roll out, over
460,000 people with disability will be participating and
receiving funding to access the supports they need. Whilst
access is currently limited to designated trial sites, planned
roll out areas by postcode and age groupings, the planning
for full roll out is under way. I have provided an update on
the NDIS again in this issue. We hear many positive stories
from people with MS, and others, who are now in receipt of
individual funding for the first time. This continually validates
the decision for this massive policy change.
Through diligent management of expenses, and some funds
raised through events, donations, raffles and the Game
Changer Lottery, we have been able to grow our Client
Services Team and the service hours delivered.
Whilst our team is small, they really do work hard to ensure
there is a range of supports and informational resources and
seminars available throughout the year. The Peer Support
Groups continue to provide a vital link and the MS Assist
line is there to link you with the team or provide you with the
information you are seeking. Our Occupational Therapists
are a very enthusiastic group and Anna even skydived in the
name of MS! Read about it on page 26 of this edition.
The most exciting development has been the re-location
of the head office to Hillcrest and of course the recent
appointment of the new Chief Executive Officer Helen
McLean. Hillcrest provides us with a roomy, centrally
located position and importantly, brings the Client Services
Team together with space to create consulting rooms and a
physiotherapy area. It has a great feel about it and the staff
are keen to have some new Client opportunities to share
with you soon.
This winter has been pretty cold, with some challenging
storms here in SA; I think everyone is now glad to see spring
arrive. I hope you have avoided the dreaded flu and things
are going okay for you.
If you would like to make contact with any of the
Client Services Team for advice or information, please
don’t hesitate to give Amy a call on the MS Assist line
1800 812 311 and she will help you with your enquiry.
MSSANT has had a successful financial year in many ways!
4 Spring 2016 The MS Society of South Australia & Northern Territory The MS Society of South Australia & Northern Territory Spring 2016 5

Meet our CEO in waiting –
Helen McLean
Dr Google –
To believe or not to believe?
Liesl Murdoch, Counsellor
My journey with the Society commenced on 9 August and
every moment has been wonderful!
I have been very warmly welcomed and my learning curve
has been steep and rewarding.
I come to you as the new CEO, after extensive Senior
Executive careers across a number of not for profit
organisations, including Guide Dogs SA&NT, Animal
Welfare League, Girl Guides SA, and the Federal
Government as a Director in the Fair Work Ombudsman
and other departments.
Throughout my professional career, I have always
held a candle for the Multiple Sclerosis Society and its
valuable contribution to its Clients and the South
Australian community.
START TIME:
12.15PM SAT 11 FEBRUARY 2017
FINISH TIME:
12.15PM SUN 12 FEBRUARY 2017
The Society has always had a very strong reputation in SA,
and more recently this has been maintained by the goodwill
of our interstate colleagues, and in particular, MSWA. With
our disability employment service, Multiple Solutions, at our
side, the Society will build on the strong foundations we
have been given, looking to the future to ensure growth,
opportunity and progress, which includes the provision of
exceptional Client service through the NDIS.
At the Multiple Sclerosis Society of SA & NT and
Multiple Solutions, we do great things each and every
day to help make life easier for those we support –
people living with MS.
Helen McLean
Make a splash as The MS Mighty Swim returns in February 2017!
We’d love you to join us in raising funds to support people living
with multiple sclerosis in South Australia and the Northern Territory.
REGISTER AT
msmightyswim.com.au
CALL (08) 7002 6500
EMAIL events@ms.asn.au
Which of you reading this article would put their hand up
if asked, “Have you googled MS?” I imagine that most of
you would. And you would not be alone in answering in the
affirmative. In fact, recent research suggests that 8 out of
10 internet users have looked online for health information
and that 66% of these searches were related to a specific
disease or medical problem. 1
Information found on the net can be helpful. It can increase
your knowledge about MS, its possible causes, current and
future drug treatments and help with symptom control and
management. This new found knowledge can also improve
your communication with health professionals, assist you to
make better, more informed decisions regarding your care
and provide you with a sense of control and mastery over
this often unpredictable illness. However, access to this
digital library is not without its pitfalls.
Entering ‘multiple sclerosis’ into the google search engine
will, in 0.41 seconds, produce a staggering 21,200,000
results! But are all these entries verified and accurate?
Regrettably not, for much of what is on the net is unverified,
inaccurate and often contradictory. It is an urban myth that
all that is written on the web has its foundations in honesty
and integrity.
So how does one decide what is reputable? This can be
done by following a few simple guidelines.
Visit reputable websites
Sites ending in edu.au, gov.au and org.au will take you to
dependable Australian websites e.g. mswa.org.au
• edu – pertains to an educational site such as a university
• gov – government bodies
• org – prominent health organisation
American sites: use the above but drop off the ‘au’
UK sites: replace ‘au’ with ‘uk’.
Look at the credentials of the author
• Articles written by people who are specialists in their fields
will post their qualifications and usually supply an address
for correspondence.
• Thorough academic research is usually undertaken by
a team of researchers so multiple authors suggest the
information may be of greater quality and reliability.
• ‘Testimonials’ may give a personal edge to a story but one
person’s experience cannot be broadly applied across a
greater population.
Look at the date of publication
• It’s hard to believe but the internet has been around for
over 20 years so the more recent the date of publication
the better.
Look at what type of language is being used
• Academic information is often presented using formal/
scholarly language.
• Simplified language and sweeping generalisations or
claims can infer a lack of accurate and plausible research
and information.
Does the site feature online/interactive
‘click on here’ ads?
• Often, less reputable sites have ads which make
unreasonable promises. e.g. “lose 10 kg in 10 days”.
Such ads would suggest the accuracy of featured
information may also be as improbable.
• Ads also suggest the web page would not be in existence
without them. Reputable sources have large organisations
and corporations funding their websites.
Avoid sites that require payment for information
Payment for information implies that someone is trying to
make money from the site and their motives in sharing their
information may be less than noble.
Navigating the web for solid and accurate information
can be a daunting task but it can be done. By using these
guidelines, you can increase the integrity of the information
you are reading. The main thing to remember is to be
selective in what you browse through and take on board.
Dr Google should be seen as a complementary tool to your
MS management and not the principal source of information
and understanding about MS. The internet can assist you
but it cannot be an adequate substitute for the knowledge
and clinical guidance provided by your doctor and other
health professionals involved in your care.
Don’t forget the MSSANT Client Services Team can
help source trusted articles, links and verify
information for you. Contact MS Assist on 1800 812 311
or msassist@ms.asn.au
1
www.pewinternet.org/files/old-media//Files/Reports/2011/PIP_Health_Topics.pdf
6 Spring 2016 The MS Society of South Australia & Northern Territory The MS Society of South Australia & Northern Territory Spring 2016 7

Round-up of research
and other items of interest
Sue Shapland RN, BN
Here we bring you some interesting research updates from
various sites around the world.
Does the month you were born affect your risk of
developing MS?
A large study which included a very detailed survey was
undertaken to determine whether there is a pattern to birth
month for people with multiple sclerosis.
Data from more than 21,000 people with MS in the UK were
included and the study found that people diagnosed with MS
are more likely than average to have been born in April, and
less likely than average to have been born in November.
The results of the study suggest that environmental factors
very early in life contribute to the risk of MS. One of these
factors could be low sunlight exposure during winter
pregnancies, leading to low maternal vitamin D levels which in
some way increase the risk of developing MS later in life. Other
factors such as the mother’s exposure to seasonal infections or
seasonal differences in diet could also play a part.
Comment by authors: Birth month is only one of a number
of environmental factors that could influence the risk of
developing MS. Others include smoking and exposure to
infections, especially Epstein-Barr virus which causes
glandular fever.
Rodríguez Cruz PM, Matthews L, Boggild M, et al.
Are headaches more common during a relapse?
Headaches are more common in
people with MS and this study
investigated if headaches were
more likely to occur during a
relapse than remission.
This study in Iran compared the
reports from 57 people with
RRMS and 57 people without a
neurological condition (controls).
People with MS were questioned during a relapse and again
three months later. It was found that headaches were more
common during a relapse, particularly migraines. However,
headaches were also more common in people with MS
during remission, when compared to the general population.
Nearly 50% of people with MS having a relapse also
experienced a headache compared with 38.6% in remission
and 27.7% in the control group. The most common type of
headache to experience during a relapse was a migraine,
followed by tension headache.
Headaches during a relapse were reported to be severe
and described as compressing. People who had been
diagnosed with MS in the last three years were more likely
to experience a headache during relapse than those who had
been diagnosed for longer.
Togha M, Abbasi Khoshsirat N, Moghadasi AN, et al.
Could Pilates have cognitive
benefits as well as physical?
In the past, people with MS
were advised to avoid exercise
especially activities that might
be tiring. However, a number of
studies have shown that regular,
moderate exercise is a good thing.
Pilates is one of many options
available to stay active.
This study included 20 people with MS, split into two
groups. The first adhered to clinical Pilates and the second a
traditional exercise program for eight weeks.
The study found that both clinical programs improved
performance on some physical tests. Those in the Pilates
group had significant improvements in balance, fatigue
and tiredness and they had greater improvements in their
cognitive symptoms and quality of life when compared to the
traditional exercise group participants.
Küçük F, Kara B, Poyraz EÇ, Idiman. J Phys Ther Sci. 2016
Mar;28(3):761-8. Epub 2016 Mar 31.
Some forms of MS may be hereditary
After many years of saying that MS is not passed down the
generations, new research is now saying the opposite.
Researchers from Canada, led by Prof. Carles Vilariño-Güell,
report they have proven that MS can result from a single genetic
mutation on a gene called NR1H3. This they say produces a
protein that acts as an ‘on-off switch’ for other genes.
Just one in 1,000 people with MS have this specific mutation
according to the researchers. However, the finding uncovers the
biological pathway that leads to the rapidly progressive form of
MS, which accounts for 15% of people with the disease.
The researchers used blood samples from 4,400 people
with MS and 8,600 blood relatives as part of a 20-year
project funded by the MS Society of Canada and the Multiple
Sclerosis Scientific Research Foundation.
They found the mutation in two Canadian families in which
several members lived with a rapidly progressive type of the
disease. In these families, two-thirds of the people with the
genetic mutation developed MS.
Childhood obesity linked to higher risk of MS
A collaboration between researchers from Canada and the
UK has found a causal relationship between obesity and the
risk of developing multiple sclerosis. Several observational
studies suggest that obesity (measured by Body Mass Index
or BMI) in a person’s earlier stages of life is associated
with an increased risk of developing MS. The research also
suggested a relationship between the decrease in vitamin
D levels as a person’s weight increases as a possible
mechanism for the increased risk.
The Progressive MS Alliance Updates
More than 2.3 million people live with MS worldwide; over
one million have progressive MS. Up to 15% are diagnosed
with primary progressive MS. Whilst there have been
advances in understanding other forms of MS, progressive
MS remains difficult to understand and treat.
The International Alliance was set up to focus research
efforts on progressive MS; Australia is represented
through MSRA. Initial funding was allocated for 22 projects
designed to improve understanding of genetic and biological
processes, repurpose existing drugs and speed up clinical
trials. These one to two year research projects began in
2015, and focus on six areas:
• Clinical trials and outcome measures
• Biomarkers of progression
• Gene studies
• Rehabilitation trials
• Underlying pathology of progression
• Developing new disease models
Cancer risk associated with Mitoxantrone
Mitoxantrone is an anti-cancer drug that was sometimes
used to treat active MS. Dosage was limited as it is known
to cause damage to the heart muscles. It is already known
that there is an associated increased risk of cancer. This
study followed a group of German patients for a number
of years. They reported that 5% of people or 1 in 20 got
cancer. Whilst life is associated with a cancer risk, this
appears high and is one of the reasons that use of this agent
has dwindled.
Conclusion: While the overall incidence of malignancies
was only mildly increased, the risk of leukaemia and
colorectal cancer was heightened. If confirmed, post-therapy
colonoscopy could become advisable.
Buttmann M, Seuffert L, Mäder U, Toyka KV. Malignancies
after mitoxantrone for multiple sclerosis: A retrospective
cohort study. Neurology. 2016 Jun 7;86(23):2203-7.
Websites of interest:
MS in children online resources from MSIF
Here you can find information about MS in children and
download a parent’s guide.
Visit: msif.org/about-ms/childhood-ms/
MStranslate
This Australian website seeks to bring together “the wealth
of information on MS in a way that makes it accessible to
every element of the community”.
There are a range of links and summaries of various
research studies including those looking into lifestyle
modification e.g. the multiple benefits of exercise.
They collaborate with a range of Australian researchers
including Professor George Jelinek, head of the
Neuroepidemiology Unit at the University of Melbourne.
Visit: mstranslate.com.au
Read more at:
ms.asn.au/researchupdate
8 Spring 2016 The MS Society of South Australia & Northern Territory The MS Society of South Australia & Northern Territory Spring 2016 9

The National Disability
Insurance Scheme (NDIS)
Sue Shapland RN, BN
The NDIS will deliver a life-long approach to support people
with disability using individualised planning processes to
identify the reasonable and necessary supports needed to
enable people living with disability to achieve their goals.
To participate, you need to meet both the age (under 65
years when registering) and residency requirements i.e. you
reside here and are either an Australian citizen, a permanent
resident of Australia, or a New Zealand citizen who is a
Protected Special Category Visa holder.
Your disability needs to be due to one or more intellectual,
cognitive, neurological, sensory or physical impairments,
or due to one or more impairments attributable to a psychiatric
condition and is, or is likely to be, permanent and substantially
reduces your ability to take part effectively in activities without
the support of others and/or aids and equipment.
Roll out in SA
By July 2018, it is expected that 26,000 people in SA
will be accessing the NDIS. Nationally it is expected that
460,000 will be registered with the scheme by 2020 at a
cost of $23 billion.
When the NDIS commences in a region, people currently
receiving supports through South Australian Government
specialist disability services will be moving first.
Existing Commonwealth and state-based services and
supports will continue until eligible people with disability
start their plans with the NDIS.
The NDIS will become available for adults aged 18 to 64
years in:
• Northern Adelaide in the local government areas of the
City of Playford, City of Salisbury and City of Port Adelaide
Enfield (East) local government areas from 1 July 2017.
• Barossa Light and Lower North, from 1 July 2017.
• Barossa Council
• Town of Gawler
• Light Regional Council
• District Council of Mallala
Adults aged 18 to 64 years in the City of Tea Tree Gully
local government area are eligible from 1 October 2017.
Read more, and see the maps on the roll outs,
on the NDIS website:
myplace.ndis.gov.au and click on the SA link.
NDIS NT Update
The NDIS trials commenced in the Barkly region in 2014.
The NDIS will roll out, geographically, across the Northern
Territory over a three-year period, ultimately providing
support to more than 6,500 people. People will move to the
NDIS at different times depending on where they live.
The transition to full scheme commenced on 1 July 2016
with continued roll out in the Barkly region. The Darwin
urban region is due to start rolling in from 1 July 2018.
The MSSANT Client Services team will write to you prior
to your area rolling in to the expanded sites to alert you
to the scheme and how you can register. We have some
information resources that were developed nationally
for people living with MS to help you understand the
terminology and the planning process. We will also conduct
some information sessions where you can chat to the staff
about your queries or concerns.
I have included a couple of case studies from two MSWA Members we have worked with and who have
received funding through the trial sites.
My NDIS Story: Anita G
“Before NDIS/MSWA I was sad, scared, isolated and
lonely. My body and my life were atrophying. My future
looked bleak.
Enter NDIS/MSWA. Immediately my life exploded with
possibilities and potentials. I was nurtured, cared for
and befriended.
Let me list a few of the gifts I have received through the
NDIS/MSWA partnership: railings in my bathroom, pool,
and walkways; physio and OT; a bespoke wheelchair,
designed for me. I now move safely around my home and
in the community.
What greater gift is there other than rekindling my
passion for life.”
Anita
My NDIS Story: Kay
Kay has MS. Her cognitive symptoms cause her
great stress and anxiety. Her NDIS plan included
transdisciplinary access to allow her to maintain
independence and well-being at home and in the
community.
Over the last year with the OT, she has accessed a new
light weight manual wheelchair for independent mobility
within the home and a mobility scooter; for independent
access to the community. Kay is now able to take her
puppy for walks and venture into town without relying on
others for assistance.
The OT also developed in-home strategies to help
manage her cognitive symptoms and to achieve her
goal, “To be able to prepare a meal independently for my
husband and me, one day a week”.
The OT visited her home and worked with her, cooking
her chosen recipe, and developing strategies to support
her. She now prepares a meal for herself and her
husband once a week.
The NDIS allows timely access to funding to meet reasonable and necessary needs and individual outcomes
and this is really making a huge difference. We look forward to full roll out!
MSchievous Bunch
Cooling Vest Grants
By now everyone would have heard about the amazing
group of women called the MSchievous Bunch.
And if you bought their 2015 calendar you would have
seen them as well! Since 2015 they have continued as
community fundraisers, working hard at events such as
‘Car show and shines’, Bunnings bbqs, afternoon teas,
and endless events that have raised over $17,000.
The MSchievous Bunch want this money to be used to
help as many people with MS as possible and one way to
do this is to help people stay cool. We all know that for
the majority of people with MS overheating is one of the
worst things that can happen – fatigue levels skyrocket
and MS symptoms worsen. The Arctic Heat cooling vest
is a proven way of controlling body temperature, allowing
users to exercise, garden or just continue with normal
life, even when the weather is warm.
The Cooling Vest grant will subsidise the cost of an
Arctic Heat cooling vest, successful applicants will
only need to pay $50 to obtain a new vest, in time
for the heat of summer. In August, 15 people were
successful in applying for a cooling vest grant, and now
have their vests. The MSchievous Bunch want to extend
this opportunity to another 50 people with MS.
Applications must be received by 31 October.
Successful applicants will need to pay a $50
contribution before orders can be placed.
For an application form and more information,
contact MS Assist on 1800 812 311 or email
msassist@ms.asn.au
10 Spring 2016 The MS Society of South Australia & Northern Territory The MS Society of South Australia & Northern Territory Spring 2016 11

Overview on
type 2 diabetes
Limit foods high in energy such as takeaway foods, sweet
biscuits, cakes, sugar sweetened drinks and fruit juice,
lollies, chocolate and savoury snacks. Some people have a
healthy diet but eat too much. Reducing your portion size is
one way to decrease the amount of energy you eat. Being
active has many benefits. Along with healthy eating, regular
physical activity can help you to manage your blood glucose
levels, reduce your blood fats (cholesterol and triglycerides)
and maintain a healthy weight.
Exercise
Everybody benefits from regular exercise. For people
who have diabetes, or are at risk of diabetes, it plays an
important role in keeping them healthy.
For a person with diabetes, exercise helps:
• insulin to work better, which will improve your diabetes
management;
• maintain a healthy weight;
• lower your blood pressure;
• reduce your risk of heart disease; and
• reduce stress.
Type 2 diabetes is a progressive condition in which the body
becomes resistant to the normal effects of insulin and/or
gradually loses the capacity to produce enough insulin in the
pancreas. We do not know what causes type 2 diabetes,
but it is associated with several modifiable lifestyle risk
factors. Type 2 diabetes also has strong genetic and family
related risk factors.
It is diagnosed when the pancreas does not produce enough
insulin (reduced insulin production), the insulin does not
work effectively, and/or the cells of the body do not respond
to insulin effectively (known as insulin resistance).
Type 2 diabetes represents 85 to 90 percent of all cases
of diabetes. It usually develops in adults over the age of 45
years but is increasingly occurring in younger age groups
including children, adolescents and young adults. It is more
likely in people with a family history of type 2 diabetes or
from particular ethnic backgrounds.
For some people the first sign may be a complication
of diabetes such as a heart attack, vision problems
or a foot ulcer.
Type 2 diabetes is managed with a combination of regular
physical activity, healthy eating and weight reduction. As
type 2 diabetes is often progressive, most people will need
oral medications and/or insulin injections in addition to
lifestyle changes over time.
What happens with type 2 diabetes?
Type 2 diabetes develops over a long period of time.
During this period, insulin resistance starts and this is
where the insulin is increasingly ineffective at managing the
blood glucose levels. As a result of this insulin resistance,
the pancreas responds by producing greater and greater
amounts of insulin to try and achieve some degree of
management of the blood glucose levels.
As this over production of insulin occurs over a very long
period of time, the cells in the pancreas that produce
insulin wear themselves out, so that by the time someone
is told that they have type 2 diabetes, they have lost
50-70% of those insulin producing cells. This means that
type 2 diabetes is a combination of ineffective insulin and
not enough insulin. It is a progressive condition and the
progression is related to the ongoing destruction of the
cells in the pancreas that produce insulin.
Type 2 diabetes can often initially be managed with healthy
eating and regular physical activity. However, over time most
people with type 2 diabetes will also need tablets and many
will also need insulin. It is important to note that this is just
the natural progression of the condition, and taking tablets
or insulin as soon as they are required can result in fewer
long term complications.
What causes type 2 diabetes?
There is no single cause of type 2 diabetes, but there are
well established risk factors. Some of the risk factors can be
controlled and others people are born with. People are at a
higher risk of getting type 2 diabetes if they:
• have a family history of diabetes;
• are older (i.e. over 55 years of age) as the risk increases
as we age;
• are over 45 years of age and overweight;
• are over 45 years of age and have high blood pressure;
• are over 35 years of age and are from the Pacific Islands,
the Indian subcontinent or Chinese cultural background; and
• have given birth to a child over 4.5 kg, had
gestational diabetes when pregnant, or have
Polycystic Ovarian Syndrome.
Symptoms
In type 2 diabetes many people have no symptoms at all.
As type 2 diabetes is commonly, but not always, diagnosed
at a later age, signs are sometimes dismissed as a part of
getting older. In some cases, by the time type 2 diabetes is
diagnosed, the complications of diabetes may already be
present. Symptoms include:
• being excessively thirsty
• passing more urine
• feeling tired and lethargic
• always feeling hungry
• having cuts that heal slowly
• itching / skin infections
• blurred vision
• gradually putting on weight
• mood swings
• headaches
• feeling dizzy
• leg cramps.
Eating Well
Healthy eating and an active lifestyle are important for
everyone, including people with diabetes. Having a healthy
diet and being active is an important part of managing
diabetes because it will help manage the blood glucose
levels and body weight.
Meals that are recommended for people with diabetes are
the same as for those without diabetes; there is no need to
prepare separate meals or buy special foods.
Everyone including family and friends can enjoy the
same healthy and tasty meals together. As a guide, it is
recommended people with diabetes follow the Australian
Dietary Guidelines - Healthy Eating for Adults and Children.
What should be eating?
Eating the recommended amount of food from the five food
groups will provide you with the nutrients you need to be
healthy and prevent chronic diseases such as obesity and
heart disease.
To help manage your diabetes:
• Eat regular meals and spread them evenly throughout
the day
• Eat a diet lower in fat, particularly saturated fat
• If you take insulin or diabetes tablets, you may need
to have between meal snacks
• It is important to recognise that everyone’s needs are
different. For individualised advice, all people with
diabetes should see an Accredited Practicing Dietitian
in conjunction with their diabetes team.
Energy balance
Matching the amount of food you eat with the amount of
energy you burn through activity and exercise is important.
Putting too much fuel in your body can lead to weight gain.
Being overweight or obese can make it difficult to manage
your diabetes and can increase the risk of heart disease,
stroke and cancer.
Taking care of the feet
Ulcers or other lesions on the feet are a serious danger for
people with diabetes. It is important to avoid foot damage
especially for middle-aged and elderly people.
It is important to:
• always inspect your feet before and after exercise
• avoid exercise that causes stress to the feet (e.g. running)
Exercise which poses minimal weight or stress on the feet
is ideal i.e. riding an exercise bike or brisk walking in good
footwear. Wear comfortable and well-fitting shoes. See a
podiatrist for foot care and advice.
Maintaining a healthy weight
One of the most important aspects of diabetes management
is to maintain a healthy body weight. Being overweight not
only increases the risk of heart disease, stroke and some
cancers, it also makes diabetes harder to manage. Small
changes in diet such as reducing portion sizes and swapping
to low fat dairy products, can help to achieve a healthy body
weight and manage diabetes.
A small weight loss (5-10% of body weight) can make a big
difference to diabetes management and, as a consequence,
reduce the risk of developing complications like heart
disease, stroke and some cancers. If there is a risk of
pre-diabetes (impaired fasting glucose or impaired
glucose tolerance), losing 5-10% of a person’s current body
weight can prevent type 2 diabetes in up to nearly 6 out of
10 people.
Article Credits:
Diabetes Australia
Dee Lucey, Community Access Nurse
12 Spring 2016 The MS Society of South Australia & Northern Territory The MS Society of South Australia & Northern Territory Spring 2016 13

Five tips for getting a mental
health boost for people with MS
Lisa Marshall
Purchasing equipment?
We recommend you speak to an OT first!
Multiple sclerosis is a condition that affects approximately 2.5 million people worldwide. It is by no means a rare
condition, yet it can make daily life stressful and overwhelming. Maintaining mental health is very important for all
people but may be even more so for those with a physical ailment. Here are some ways to help improve your mental
health and positive outlook when you’re living with multiple sclerosis.
1
2
3
Find a support network
When no one around you truly understands what it’s
like to have MS, your mental well-being can suffer.
Finding an MS support group puts you in contact with
people who may have been dealing with the effects
of MS longer than you, or are experiencing similar
challenges. These groups offer advice, support, and
empathy which can be hard to find in loved ones who
do not fully understand the impact of MS.
Support groups do not necessarily have to meet in
person. With the unlimited connections the Internet
provides, online support groups are also a suitable and
equally beneficial alternative for many people who are
living with this ailment.
Meditate regularly
Meditation has been shown to both improve mental
health and lessen chronic pain. Additionally, regular
meditation can result in a more positive outlook and
decreased stress levels. Learning to meditate without
guidance can be a challenge, but with the rise of
meditation in mainstream culture, it’s likely you have
a knowledgeable instructor near you. You can also
turn to online guided tutorials to learn how to meditate
properly from the comfort of your home.
Find a form of exercise that works for you
Though exercise with MS can prove difficult, simply
being outdoors can improve your mindset. If possible,
exercise provides added endorphins which have been
shown to benefit mood. Even mild exercise such as
a relaxed hike along a well-kept trail will work as an
excellent mental health break. It’s difficult to be negative
when surrounded by beautiful scenery, particularly if you
make outings a part of your regular routine.
Another great form of exercise for people with MS is
swimming. Spending some time in the pool, whether
you’re doing leisurely-paced laps or water walking,
provides a great cardio workout while being easy on
the joints.
Play games for your memory
Memory loss is a fairly common symptom of MS,
which can be both debilitating and frustrating. The
ability to recall information is a key component to
independence, which is something no one wants to
lose. Playing games meant to maintain memory can
help eliminate the aggravation of forgetfulness.
Remember the positives in your life
Making a list of things you love, appreciate, and are
grateful for can be a useful prop for bad days. Taking
the time to remember how many things you have to be
happy about is often one of the most mentally helpful
activities a person can do. Pin the list somewhere
you see it regularly and don’t be afraid to add to it.
Positivity plays an enormous role in mental health
and while it can be difficult to maintain, having a
physical reminder or motivation, like a list, can help.
Some studies are even showing that a positive outlook
can improve your physical health alongside your
mental wellbeing.
Giving in to frustration can be easy, but remembering
to care for your mental health and overall well-being
is an important part of living. MS may mean more
physical difficulties but it does not have to affect your
mental health. With support, beneficial routines, and a
positive outlook, you can live a more fulfilling life.
Lisa Marshall wanted to start AussieWell.net after meeting some of her long-distance online friends on a trip. Being from
the States, they had a lot of ‘typical’ questions about living in Australia, and so Lisa decided to provide a newcomer’s
guide, a go-to for any and all info on moving to or living in the country. Now that she invests a lot of time in her site,
she continues to think about the safety, wellness, and overall lifestyle advice she can spread to Aussies and their visitors.
Online resources: artofliving.org/au-en/benefits-meditation-0
intheswim.com/eGuides/burning-calories-in-the-pool
4
5
A large part of an occupational therapist’s (OT) work
is providing information, doing assessments and
recommending and prescribing the correct equipment
to match the individual’s needs.
The wide range of equipment includes chairs and seating,
rails and ramps, aids in the kitchen and bathroom, beds,
computer access, scooters and so on. Every assessment is
unique and correct prescription makes all the difference.
To make a good selection, it is advantageous to know
what equipment options are available and what different
suppliers stock.
Clients and their carer or family need to be involved in the
equipment assessment and selection process because
they know what they require the equipment for, and how
it will be used. It is this working together that leads to the
best outcome.
Funding of equipment is a separate issue to the assessment
and selection of equipment. Funding bodies have different
criteria on grant eligibility, which is usually based on income.
Clients who are not eligible for these funding grants often
feel alone, and disappointed, when it comes to accessing
equipment. The National Disability Insurance Scheme (NDIS)
subject to eligibility criteria, will hopefully resolve many of
these issues for Clients as it rolls out in the future.
Accessible vehicle for trade
An MSSANT Client is offering to trade their specially modified car to
a person with a use for it. Uwe and his wife have lived with MS for
over 30 years and would like to help someone else with MS.
Uwe lives in North East Adelaide. He owns a 2004 Toyota Porte,
similar to the photograph. It has the side sliding door with the
front seat turning and coming out for ease of access into the car.
It is in good condition with full registration and insurance.
Uwe does not want to sell his car; he would like to exchange it for
another vehicle as he wants to give the car to a struggling friend.
He would ideally like to trade his car with someone in need of it
for a ‘non-modified’ car, preferably an automatic.
If you are interested and need a special car for transport, please
call Uwe on 8261 9298 or 0435 668 131 to discuss his offer.
We also occasionally meet Clients who have spent a
lot of time and money on equipment but have not made
a good selection, based on their needs.
Our OTs can provide information, assessment and
recommendations to Clients and their families even
when the equipment will need to be self-funded.
We would like to help you get it right and to save
you from unnecessary expense and frustration.
Contact the MSSANT Occupational Therapy Team via
MS Assist on on 1800 812 311 or msassist@ms.asn.au
14 Spring 2016 The MS Society of South Australia & Northern Territory The MS Society of South Australia & Northern Territory Spring 2016 15

Workplace Solutions
Hannah’s story
Dietary information
Workplace Support Consultant,
Michele.
Hannah’s story is an excellent example of why we
provide support within the Workplace Solutions team and
demonstrates the various types of support that are provided
to help someone return to work and maintain employment.
Her story is a true testament to the quality service Michele
provides on a daily basis.
“My life was turned upside down last September when I
was diagnosed with MS. I went from being a completely
independent, strong, full-time working mother of two
toddlers, to someone who needed help on a daily basis.
I had woken up one morning with pins and needles
throughout the left side of my body. My left hand struggled
to function the way it once did and my walking had
deteriorated to a slow crawl.
After hopping through a selection of medications,
it was time for me to return to work after what felt like
a lifetime away.
The thought of returning to work was daunting, but I was
lucky enough to have the guidance of Multiple Solutions.
Michele, my Workplace Support Consultant, attended
meetings with my doctor and my workplace. Michele
helped explain to my workplace what MS is, and what help
I required in order to get back to my full capacity. Having
a professional third party there made this a very smooth
process, as Michele also organised all my return to work
plans. I was also fortunate to receive a new chair and
keyboard to assist in my pain and fatigue management.
Suddenly the prospect of returning to work was made
a lot easier, and slowly I am getting back to my old
independent self.
Now I keep in regular contact with Michele, which is
reassuring to knowing there is help there if I need it.
Michele has removed the stress from an overwhelming
situation, and I am forever grateful for all she has done for
me. I really hope anyone who needs help getting back to
work reaches out to Multiple Solutions, you won’t regret it!”
Hannah
Share your MS experience in an eBook
The MSSANT Client Services staff are regularly asked
questions about diet and what types of food should be eaten
when a person has MS. Staff can guide you to booklets and
websites but here are some responses from ‘the experts’.
MS Research Australia, July 2016
“There is certainly much to be said for a healthy diet
containing high levels of fresh foods, avoiding too much
processed food and ensuring that we get a wide range of
essential nutrients.
However there have been no clinical studies done to confirm
that adhering to any particular diet can cure or halt the
progression of MS in a majority of people with MS. There
is a great deal of interest in the role that diet may play in
the development and also the management of MS, however
direct scientific evidence for particular nutrients and for
specific diet regimes is lacking.
MS Research Australia proactively funds a great deal of
innovative research into diet and we work closely with the
researchers and neurologists with expertise in all areas of
MS research to ensure that the many promising avenues for
improving the lives of people with MS are explored.”
More information is available from MS Research
Australia. Visit their website at msra.org.au
We then spoke to Menu Concepts. Their dietitian Lauren
Stribley has spoken at some of our MS information
sessions and to peer support groups. Menu Concepts
understand the needs of people with MS and their key
recommendations are:
• Follow a healthy, well-balanced diet
• Maintain a healthy weight
• Meet vitamin and mineral requirements
• Include healthy fats in your diet
• Consider how and when you eat
Where to go for personalised information?
Chronic Disease Management Plans are available for people
with MS and can cover five visits per year to a dietitian.
These plans include Medicare bulk billed visits to allied
health professionals arranged by your GP. Those with private
health insurance may prefer a self-referral with a 50 to 80%
refund from a health fund.
Menu Concepts have centres throughout Adelaide.
Visit their website for more information
menuconcepts.com.au
A group of Clients would like to publish a personal story
eBook to help others diagnosed with MS feel that they
are not alone. The group is in search of personal stories
and testimonies from people living with MS. They could
possibly share their experiences and how they manage
their symptoms on a day to day basis.
The eBook would read rather like a social media forum,
where someone who is experiencing a symptom puts up
a post and others respond. There will be various topical
chapters the reader could refer to and hopefully find
something they can relate to that will help them deal with
their own situation. As well as symptoms, other topics
could include telling family, friends and work colleagues;
working with MS; rural living and the challenges faced;
and relationships. A chapter written by family and friends
of people with MS could also be included. Each chapter
will include comment from an MSSANT staff member to
provide a balance of information.
The privacy and
confidentiality of
contributors is ensured.
All funds raised from the
sale of the eBook will go
to the MS Society of
SA & NT to support
Client services.
For the book to be
written, we need
to hear your story.
Please consider what
you would like to share and what you would like
to read. If you wish to register your interest,
please contact MS Assist on 1800 812 311 or email
msassist@ms.asn.au and more information
will be sent to you.
Are you a woman living with
multiple sclerosis?
I am interested in finding out about your relaonships with
health professionals.
I am undertaking a research study which aims to explore the
paent-health professional relaonship from the
perspecve of women with mulple sclerosis.
I would like to speak with women over 18 years of age, who live in
metropolitan Adelaide and who have been diagnosed with
mulple sclerosis for longer than 12 months.
Parcipaon in this study would involve a one hour interview, at a
me and locaon of your choosing.
Interested in parcipang?
16 Spring 2016 The MS Society of South Australia & Northern Territory Want more informaon? The MS Society of South Australia & Northern Territory Spring 2016 17
Please contact Tracey Obst Tel: 0402 072 254

Peer Support
Join a support group and talk to others who understand.
What is a Peer Support Group?
A Peer Support Group is a gathering of people with MS.
The purpose of the group is to provide support to
each other and to share information by:
• learning more about MS;
• sharing feelings and experiences;
• obtaining accurate information;
• providing an opportunity to talk through problems
or choices being faced;
• listening to others who share similar feelings
and experiences;
• helping others through the sharing of ideas and
information; and
• knowing they are not alone.
New Peer Support Groups
Singing group
Even if you can only sing in the shower, here is an
opportunity to develop your vocal skills while enjoying some
great company. Deborah Munro, the Music Director of
Illumina Voices and previous Artistic Director of the award
winning Young Adelaide Voices, will lead a session
of singing, fun and friendship.
The first session was held on 26 August and there was a
mixture of youth and maturity, male and female, in tune and
learning, and enjoyment for all.
This group is for people living with MS and their carers, and
is open to both men and women. Sessions will be held in
the early afternoons during the week at the Mitcham Uniting
Church and will be followed by afternoon tea.
Please call MS Assist on 1800 812 311 or email
msassist@ms.asn.au for details of the next session.
Tai Chi classes in the mid-north
A Tai Chi instructor, with 20 years of teaching experience, is
running classes for people with MS living in mid-north SA.
Classes are held during school terms and activities can
be performed seated or standing. The cost will be a gold
coin donation.
Classes have commenced at:
Clare on Monday afternoons
4.30pm at St Joseph’s School Hall
Kapunda on Tuesday evenings
7.30pm at Uniting Church Hall
Please call MS Assist on 1800 812 311 or
msassist@ms.asn.au, if you would like more information
or if you would be interested in Tai Chi class in Gawler
or Hamley Bridge.
Facebook online support groups
MySociety
This is an online Facebook group for people living with MS
in SA & NT. This is a private place to chat, only people in
the group will be able to read posts. It is a closed forum,
only accessible to members from South Australia and the
Northern Territory.
To protect the confidentiality of MySociety members, the
group has been set up as a private group. If you would like
to join the group, please send an email to msassist@ms.asn.
au to request membership.
MySociety - Family and Friends
A Facebook group for family, friends and carers of people
living with MS. This is a private place to chat, share
information and connect with others who are supporting
someone with MS. It has been created, and is administered
by the MS Society of SA & NT. As it is set up as a private
group, only people in the group will be able to read posts.
Request membership at facebook.com/
groups/1388437131394906/
Peer support groups meet in the following areas:
(Family members and carers are welcome)
If there have been any changes to your support group that we’re not aware of, please contact the
MS Society to advise us of any updates.
REGION WHEN LOCATION CONTACT
Adelaide Hills –
Mount Barker
Barossa
Broken Hill
City based for workers
Clovelly Park
Copper Triangle
Darwin
Fleurieu
Gawler
3rd Monday of each month,
6.30pm
3rd Thursday of each month,
11am
Sundays,
11am bi-monthly
2nd weekend of every month
alternating Friday nights/
Saturday brunch
4th Friday of each month,
12pm
1st Wednesday of each month,
11am
Various
12pm
Random Tuesdays
at 12.30pm
2nd Monday of each month,
10am
Auchendarroch Tavern,
Mount Barker
Tanunda/Nuriootpa
Gloria Jean’s Coffee,
Bromide St
Various city locations
Tonsley Hotel
Various venues
Various venues
Rotated around Fleurieu eateries
Gawler Women's Health Centre
David
0410 451 301
Penny
0488 952 211
MS Assist
1800 812 311
Jess
0403 155 696
Christine Sutherland
(08) 8276 3779
Allan
0498 386 949
Sarah
0439 885 604
Jill
0428 843 327
Helen Hoppmann
0403 295 348
Gawler evening group Various Various venues Helen Hoppmann
0403 295 348
Hard Yakkas
(Salisbury)
Kapunda
Kensington
(Overcoming MS group)
Modbury
Mount Gambier
Noarlunga
Port Lincoln
Port Pirie
Riverland
South East Support
Group
Last Thursday of each month,
12pm
2nd Tuesday of each month,
6.30pm
3rd Monday of each month,
6.30pm
Last Tuesday of each month,
10am
1st Friday of each month,
1pm
1st & 3rd Thursday of
each month, 12.30pm
2nd Tuesday of each month,
4.30pm
2nd Wednesday of each month,
12pm
1st Tuesday of each month,
10am
3rd Thursday of each month,
10.30am
Sabine's Cafe & Bakehouse,
Parabanks shopping centre
Various venues
Various venues in Norwood area
Independent Living Centre,
Gilles Plains
Various hotels in Mount Gambier
Various lunch venues
Various venues
Port Football Club,
Port Pirie
The Big River Golf Club,
Berri, and other venues
Lutheran Church Hall,
Naracoorte
Tallia Coulter
0403 766 157
Pauline
0427 010 754
Pam Schartner
(08) 8331 9360
Gary Griffiths
(08) 8263 7760
Len Stidwill
0403 218 971
Jude Brown
(08) 8322 5441
Rick Cunningham
0429 977 082
Anne
0448 321 610
Crystal
0418 690 013
Kay Cavill
0407 615 118
Tailem Bend Wednesdays, mid-monthly Various venues Sue Griffiths
(08) 8572 3914
Under 35s
(and a bit older)
Western Suburbs
2nd Monday of each month,
6.30pm
Last Tuesday of each month,
10am
Various venues,
north of the city
Various venues
Nicole
0417 003 547
Enza
0433 972 312
18 Spring 2016 The MS Society of South Australia & Northern Territory The MS Society of South Australia & Northern Territory Spring 2016 19

Information
Sessions 2016
The MS Society of SA & NT provide a series of education programs focused on maintaining a healthy lifestyle
and keeping you up to date with latest information and research. These programs are free to Clients and
their family and friends.
Registration is essential. Confirmation letters are provided 1-2 weeks before each seminar or workshop.
If you do not receive a letter/email confirmation for a session you had planned to attend, please notify
MS Assist on 1800 812 311 or email msassist@ms.asn.au. At the time of printing, the dates, times and
venues are current however details may need to be changed. Please ensure you check details when registering.
Client Christmas/end of year celebration
A generous grant will allow the return of the Client Christmas lunch – an opportunity for Client members to come
together to enjoy a meal, some entertainment and have a special day out. The finer details are still being put together,
but the arrangements for the SA lunch are below. A Christmas lunch will also be provided for our NT Clients in Darwin,
invitations for this will soon be posted.
Date: Monday, 12 December 2016
Time: 11.30am to 2.30pm
Venue: Klemzig Community Hall, 242 North East Road Klemzig
RSVP: Bookings are essential. Please RSVP by Wednesday, 30 November to
MS Assist on 1800 812 311 or msassist@ms.asn.au
This is a new facility alongside the OG Hotel and Gaza Oval. There is plenty of parking available.
The hall is air conditioned and surrounded by parks and an amazing children’s playground.
Drinks and a two course meal will be served while you enjoy some delightful music.
The lunch is provided for MSSANT Clients, their children and an accompanying adult.
Additional guests are welcome but there will be a $10 cover charge.
Leaving a gift of hope
Remembering the MS Society in your Will
Leaving a gift in your Will is one of the most powerful ways to be sure
that the Multiple Sclerosis Society of SA & NT is able to continue to
provide vital support and services to those living with MS, and fund
research into the cause and cure.
For more information on how to leave a gift to the MS Society in your Will,
please contact our Planned Giving Manager.
08 6454 3168
bequests@ms.asn.au | ms.asn.au
Darwin News
MSSANT Client Forums in October
MSSANT staff will be visiting Darwin to meet with Clients and to provide MS awareness training to
local health providers. Clients and their families are invited to attend all or some of the information
sessions offered and there will be time for individual discussions with MSSANT staff. Clients will
also be able to meet new MSSANT CEO Helen McLean.
MONDAY, 24 OCTOBER
Palmerston Library Community Room
9.30am to 11.30am – Information session
Topics to be discussed:
• MS OT and Sleep Adviser Bel Cobcroft –
‘Sleep and MS – implications and strategies for improvement’
• MS Nurse Helen McCarl –
‘Symptom management – medical, exercise and diet’
11.30am to 1.30pm – Lunch and time with MSSANT staff
Gray Community Hall, Palmerston
2.30pm to 5.00pm – Time to meet with MS staff
6.00pm to 8.00pm – Information session
Topics to be discussed:
• Solicitor Tom Cobban –
‘Planning for your future – workplace insurances
and superannuation; workplace rights and entitlements’
• ‘Government supports and benefits, Commonwealth and NT’
TUESDAY, 25 OCTOBER
Lyons Community Centre
10.00am to 3.00pm – Time to meet with MS staff
4.00pm to 6.00pm – Discussion group
Topics to be discussed:
• MS Nurse Helen McCarl –
‘Information for the newly diagnosed’
Invitations will be sent to all Darwin clients with further details of forum
and booking arrangements for individual appointments.
Please mark your diaries and spread the word.
Further information on these events can be found on the MSSANT website, in the monthly
e-newsletter Vitality and MySociety Facebook group. For more information, call MS Assist on 1800 812 311.
20 Spring 2016 The MS Society of South Australia & Northern Territory The MS Society of South Australia & Northern Territory Spring 2016 21

Self-compassion:
Our greatest ally
Simon Rolph, Counsellor
Compassion cannot cure multiple sclerosis (MS). There we
go. I’ve stated the obvious; but with expectations now set
realistically low, I will now explain why compassion can
be one of our most powerful allies in our response to a
diagnosis like MS.
Paul Gilbert is a British psychologist, university professor,
founder of compassion focused therapy, and author of
books such as The Compassionate Mind. So it’s safe to say
he knows a little bit about compassion. Paul defines the
essence of compassion as “a basic kindness, with deep
awareness of the suffering of oneself and of other living
things, coupled with the wish and effort to relieve it”.
I’ll start off by addressing the deep awareness of suffering.
I am guessing that if you are reading this you either have an
MS diagnosis or know someone with one. If so, you will be
all too aware of the impact a diagnosis of MS can have with
the potential for emotional pain, physical pain, grief and loss.
Take away the reality of living with MS and we still live in a
world full of suffering. Read a newspaper or watch the news
on any given day and you will witness ongoing tragedy and
pain. Given the world we live in and the hard truth of living
in a body that is susceptible to disease and illness, suffering
is an inevitability. Throw in a highly complex but tricky
brain that has the capability of producing a range of painful
thoughts and feelings, and suffering is but one painful
memory away from being a reality.
Fortunately, it isn’t all doom and gloom. As soon as we are
able to recognise and become aware of our own suffering,
we have choice of how we want to respond. So much of
our lived experiences are out of our control; the world we
are born into, the genes we inherit, the autoimmune
diseases we can develop, but we still have choice of how
we can respond.
Holocaust survivor and author of “Man’s search for
Meaning” Viktor E. Frankl famously said:
“Everything can be taken from a man but one thing: the last
of the human freedoms – to choose one’s attitude in any
given set of circumstances, to choose one’s own way.”
This last human freedom provides us with the choice to try
and relieve our suffering with compassion, with kindness. So
what does this look like in real life?
One of the most common MS symptoms is fatigue and
in my role as a counsellor I have had the opportunity to
listen and witness a range of responses to this symptom.
These have included frustration towards the limitations
of fatigue, feelings of guilt towards reduced capabilities,
beating themselves up (metaphorically) as a result of
reduced capabilities, pushing beyond their capabilities
with the consequence of exhaustion, and fear of the future
implications of fatigue. Does any of this sound familiar?
Replace fatigue with physical pain, change in mobility or
cognitive changes and many of the described experiences
are still potentially relevant. Frustration, guilt, fear,
self-criticism and many more painful thoughts and feelings
have the ability to show up.
All of these responses are entirely normal and natural and
there is nothing we can do to stop them from showing up
from time to time. However, getting caught up in these
painful thoughts and feelings is often unhelpful and can
actually contribute to further suffering.
A compassionate alternative then is to recognise our initial
response to a symptom such as fatigue (or any form of
suffering), and choose to offer ourselves some kindness.
Rather than beating ourselves up with self-criticism, offer
some words of comfort and support. Rather than push
beyond our capabilities, allow ourselves to have a break and
perhaps a shift in expectation. Rather than getting caught up
in frustration, guilt and fear, acknowledge the presence of
these painful emotions and do something kind and helpful.
This could be something as simple as taking a few deep
breaths, having a glass of water, going for a walk, making
contact with someone who is important to you.
Self-compassion can look very different depending on
the context and isn’t always warm and fuzzy. Sometimes
being compassionate towards ourselves is making the
hard choice; not eating that very tasty chocolate bar but
instead going out in bad weather to get some exercise.
Sometimes it is quitting a job to allow for a new start,
leaving a bad relationship or making painful sacrifices for
long term benefit.
We have many different relationships, whether with friends
or family but the most important relationship we have is with
ourselves. We are constantly in our own company and at
some point we all experience pain. At that point we have a
choice. We can criticise ourselves, beat ourselves up, react
in an unhelpful way. Or we can recognise our suffering, offer
ourselves some support and kindness and be our own best
friend. Neither will change the initial cause of the suffering
but depending on the approach, the experience itself can be
vastly different.
Being compassionate towards ourselves can be
challenging. Maybe we haven’t had much practice at
being self-compassionate. Maybe we have a belief that
kindness and compassion are a sign of weakness. Maybe
we believe that self-criticism can be motivating and to
be honest, it can be at times. But take a moment and
imagine having a donkey to carry your goods to market
(trust me, this is relevant).
For your career as a trader to succeed, you need your
donkey to transfer your products on a daily basis. How do
you do this? Well, you could whip the donkey and cause pain
as motivation to move forward. Or you could dangle a carrot
in front of the donkey, offer support, encouragement and
kindness and reward your trusty steed when you arrive at
the market. Either of these approaches can get the desired
result but in the long term the punished donkey will likely
feel anxious, depressed, have no desire to be loyal and
ultimately lead a rather unhappy existence. The rewarded
donkey may not always get the goods to market on time,
but will be motivated, have a far kinder and trusting
relationship with its owner and will likely have a more
content and meaningful life than the punished donkey.
The choice we have then is what kind of owner do we want
to be to ourselves?
For further information on Paul Gilbert, compassion
and a range of relevant books, audio and video content,
please visit the following website:
compassionatemind.co.uk/about-us
22 Spring 2016 The MS Society of South Australia & Northern Territory The MS Society of South Australia & Northern Territory Spring 2016 23

That’s life
with Narelle
Narelle Taylor
Anywhere with Colin
Ros Harman, Super Navigator
I haven’t always lived in a nursing home, neither have
I always had to live with multiple sclerosis. I was quite
normal and just before my diagnosis, I lived a robust, even
adventurous life that I thought I would tell you about.
It was 1982 and my husband Greg and I had built and
launched the boat we planned to live on with our three
children. We’d then been and visited both sets of the children’s
grandparents. One set in Sydney, NSW and the other set in
Kalgoorlie, WA and in doing so, we’d given the children a
rushed familiarisation with mainstream Australia’s culture.
We felt that because they’d spent most of their lives in
eastern Arnhem Land in a remote mining community and
had never seen things like a double-decker bus or an
ice-skating rink we were obliged to broaden their horizons.
We’d arranged distance education for them whilst on-board
and had bought the latest technological devices for safety
and labour-saving, whilst we’d be ‘under way’. Consequently,
our suitcases were very heavy and bulging with our goodies
and we flew into Darwin planning to get a connecting flight
to our settlement, board our boat and then commence on
the wonderful adventure we’d planned.
We arrived in Darwin to find the town was full. There were
‘Men At Work’ concerts and a Tax Agent’s Convention
both happening in the same week. The town being so
popular decidedly inconvenienced us. It was Darwin’s
busiest weekend since cyclone Tracy. Lots of repairs to
cyclone-damaged buildings had been done over the past
few years but to be phoning around town for accommodation
whilst waiting for vacancies on a plane out, was what we
regarded as nightmarish.
One morning, after failing once more to get on a flight, we’d
secured, by phone, one night’s accommodation at a motel
just around the corner. We decided to walk. The streets
seemed to be crowded; Greg and I each carried a heavy,
bulging, suitcase. Greg carried two actually, but neither of
us said anything. We both knew things were bad enough
without embroidering our circumstance by grizzling.
I was tempted to groan though in the sub-tropical heat,
the dense pedestrian traffic, the suitcases that were so
heavy and three children to keep an eye on. That we’d
be able to navigate our boat by satellite, because of what
we’d just bought, but that technology had not advanced
sufficiently to put wheels on our suitcases, is curious today,
but was at the time, very uncomfortable. I really felt like
groaning. We made it to the motel.
The motel certainly appeared to be good enough. It would
keep weather out. Mercifully, it was air-conditioned, and
although we had said ‘yes’ to the motel management’s offer
to put all the beds we needed into our one room it sure
looked déclassé when we entered the room.
Eventually the girls wanted to swim. We hoped the swimming
pool would cool us down and brighten our moods. Poised at
the water’s edge, one child screamed, wailed like a Sicilian
widow and staggered backwards away from the pool. Within
seconds her sister did the same and of course, so did their
youngest sister. Floating in the pool was something so germy
and horrible that we, the parents, weren’t going to get wet
either. We returned to our cramped room.
The girls had had a really memorable experience and
perhaps it was that they’d never forget it that made any
talking unnecessary. It was very quiet. Eventually, Greg
stood, changed into a clean shirt, one with a collar (that
meant something serious), kissed me on the cheek and said
he’d be back in a few hours.
He left. We waited. He came back. He’d bought a car.
We’d drive out of Darwin, down to Katherine and then across
Arnhem Land and then we’d be home. There were no roads
into Gove in those days so the trip after Katherine was going
to be on bush tracks; the occasional creek/river crossing,
buffalo herds, brumby packs and kangaroos everywhere.
We planned to sleep in the vehicle (a LWB Toyota Land
Cruiser), and avoid any heroics with snakes or migratory
crocodiles. We’d bought tinned fruit, a can opener, toilet paper
(bio-degradable), spoons, water in huge flagons and we had a
compass and a map that didn’t look all that thorough.
Three days of driving and we were back home, able to see
our boat, above water, and also the bloke who had said to
Greg on the phone in Darwin that he’d buy the car.
We got on-board and unloaded the suitcases at last. We
spent a few days in Melville Bay where we fine-tuned the
new contraptions we’d bought and ventured out to do ‘seatrials’
before we headed away.
After each day on the water, doing sea-trials etc., we’d walk up
the beach to the boat club and I would be unsteady on my feet
because of what I thought was some ‘sea-leg’ thing. It was years
before I had my unsteadiness investigated and MS diagnosed.
Prior to my diagnosis, I was having great fun doing such
interesting things and even now, I find my diagnosis no
reason for doing things of less interest and no reason to
have less fun.
I held out for as long as I could. All around me I saw people
succumbing to the pressures of advertising and peer
pressure, but I was determined to stay strong. I would not
buy a Navigator for my car! No, not even if sometimes I did
end up lost and bewildered up blind alleys, meandering
through unknown suburbs, having to stop, often on the side
of roads, to pour over my ancient street directory.
Then one day an old school friend, coincidentally the same
age as me, fervently pointed out that difficulties with
directions were nothing to do with age or hormones.
“I blame urban growth,” she said, so I decided I would too,
and I bought a GPS Navigator.
My Navigator has transformed my life. I love the fact that I
am able to choose a voice for it, so I picked one that sounds
like Colin Firth. When I’m driving and the voice says – “In
500 metres at the roundabout take the second exit”. I smile
dreamily as I remember that scene from Pride and Prejudice
where Colin Firth comes striding out of the lake all damp and
masculine in his wet shirt. I’m so much more relaxed driving
now with Colin in the car. Sometimes I even take a long drive
just to spend some quality time with him.
I took a long drive with Colin the other day and went to visit
my niece. She is the first of her generation in my family
to have children of her own, and I have discovered that I
love being Great Aunty Ros, or Grunty Ros as they call me.
My Great Niece (Griece?) at two and a half has recently
discovered a new word and manages to use it in every
sentence. “Akshully (actually) me don’t want soup,” she said
very firmly today, stomping her feet to make sure we knew
she meant it. “Me want cake for lunch akshully.”
Her brother, at four and a half, is a passionate devotee of
superheros and invited me to look at his Spiderman T-shirt
and shorts in great detail. He hates to take them off, much
to his mother’s despair. She has managed to buy all the
Spiderman material available in Spotlight so she can make
multiple outfits. The little hero also taught me how to hold
my fingers so they shoot webs out and catch the baddies.
I’m sure I will find that very useful.
Both children are fascinated by my wheelchair and spent
considerable time examining the brakes. Spiderman very
helpfully pushed me around the house and showed me his
toys. We had a little itsy bitsy problem when I decided to go
down a step to see the new trampoline, resulting with me
lying on my back with my legs in the air. It didn’t hurt very
much and he tried very hard to help me up, but in the end he
used his supersonic voice to call his mum who came faster
than a speeding bullet to save the day.
I think super powers run in the family. I wonder what mine
could be. I’ve thought about leaping tall buildings in a single
bound but I don’t really have a head for heights. X-ray
vision would be useful these days; I could save a packet of
money on medical bills. I quite like Wonder Woman’s outfit,
especially her red boots. Every woman craves red boots.
I’m a bit of a romantic, but living with MS has taught
me I also need realism. I think perhaps I might become
The Intrepid Ros, Super Navigator - able to go anywhere
“akshully”, with Colin.
24 Spring 2016 The MS Society of South Australia & Northern Territory The MS Society of South Australia & Northern Territory Spring 2016 25

Skydive for MS
Running the
Barossa Marathon
Robin Wedding
On Sunday, 29 May, I completed my first marathon at
the Barossa running festival.
The start and end point was Faith Lutheran College, just
outside Tanunda. The two 21.1km loops included Research
Road and was set amidst an endless expanse of vineyards.
It was an experience to remember! Particularly noteworthy
was the sense of camaraderie felt between all runners that
day. There were high fives between running buddies, shared
encouragement between strangers, even a runner offering
around his bag of lollies midstride.
After all, from elite to enthusiast, we had all completed
the same rite of passage, the training preparing us for
this day. With only a few hundred metres to go, I met up
with my mentor who ran with me before passing the baton
to my wife who accompanied this shuffling snail for the
final stretch.
Many thanks go to South Australian Road Runners Club
(SARRC) for the training and support, and friends and
family for their encouragement. The weekly long runs
really do get you over the finish line!
Do you know what services are
offered by your local council?
MSSANT Occupational Therapist Anna and her cousin
Josie love doing things together.
In August, they gave up their usual walks along Henley
Beach, camping trips and Friday movie nights in favour
of throwing themselves out of a perfectly good airplane
(parachutes attached and working) to raise money
for MSSANT!
They said, “Finding a cure and supporting people with
multiple sclerosis is a cause that sits very close to our
hearts as we have both met courageous beautiful loving
individuals who are living with this condition.
“The more people that know about MS and support us, the
greater our impact and the closer we are globally to a cure.”
Having set a goal of $1,500, they smashed it by raising
a total of $2,508. All monies raised from the fundraiser
were donated to the MS Society of SA & NT to fund
services and support MS research.
Congratulations to Anna and Josie for their
amazing contribution.
We all know that councils look after properties, infrastructure,
dogs and cats and charge council rates, but are you aware
of the programs and community services that are available
close to your home? Many councils offer community bus and
transport services, home assistance and social activities.
There may be social groups going out for lunches and bus
trips, friendship groups, men’s sheds, gentle exercise classes,
walking groups, arts and crafts classes, and gardening, fishing
and movie groups. Some activities are free and others are often
at a very low cost, often with door to door transport provided.
Visit your council office or visit their website for
more information.
26 Spring 2016 The MS Society of South Australia & Northern Territory The MS Society of South Australia & Northern Territory Spring 2016 27

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